12-27-05 Tuesday With my perfectionist style I don't know that I will do this update justice. But in the interest of time and sleep, I must be simple and to the points. I have just started Karrie's hour long IV antibiotic, so I do have time to kill, although my body would rather be catching some ZZZ's. Speaking of IV antibiotic, that has been the majority of our stress this last week and compounded the lack of sleep even more for both Mark and I. We were sent home the 21st with one of the antibiotics to administer
via IV pump every eight hours, since Karrie had one positive blood culture for strep on the 18th. Right from the start I knew that I was going to miss some precious hours of sleep because those eight hour breaks fall when we are sleeping. Our first dose at home was uneventful, but that night was a different story and was characteristic of most doses for the last week. Our favorite alarm on the pump was air in the line. We would have to undo from Karrie's central line, remove the tubing from the pump, prime the tubng to move the air bubble, put the tubing back in the pump, and reattach to Karrie's line after sterilizing again. Oh my! We had many phone calls to the home care company nurse on call and he was very kind and helpful, but we continued to have the same problem. Eventually we had an hour dose take only an hour rather than two hours and without any alarms -
or very few. But then we would find ourselves back again to air in the line on the next dose. It was extremely frustrating and exhausting when we were only getting an hour or two of sleep at a time with the IV and the feeding pumps. One night the IV ran great, but the feeding pump did our favorite error flow over and over and over. I believe last night was the first night in over a week I slept at least 3 hours at a time. We did switch to a gravity flow tubing and we said good riddens to the IV pump
this morning. So far the last 24 hours have been easy and without alarms, although we questioned whether the dosage was going in to fast, but the nurse thought it was ok. We will complete the IV antibiotic in time to ring in the new year on Saturday.
On a more positive note (remember the negative is always at the forefront lately), WE WERE HOME FOR CHRISTMAS!!!!!!!!!!!!! We praise God for his answer to many many many prayers!!!! We are grateful for each of you that prayed us home for Christmas!!!!!! We know prayer works and Karrie is a living example of your prayers being answered! She is really doing great!!!!! Her counts were good last Friday so we didn't have to do anymore shots. YEAH! And other than the usual runny nose, she seems quite healthy. Her hair and eyelashes have diminished some in the past week, but their not all gone. Highlights from the week gone by:
Talking on the phone at the hospital to Daddy two times before we
Playing and eating at the hospital with Aunt Cyndi while Mommy
Eating only the chili beans out of Grandma Dodez's chili that
night and days afterwards. Uh oh!
Helping wrap Buster's and Grandparents' Christmas presents.
Picking out a gift for Steven and herself after her poke at the
Playing with Jennifer in the warm room at the ice skating rink
while Mommy and Steven skated.
She was just beautiful in her Belle dress and purple hat for the
Christmas Eve service at church.
She colored in a princess book and cared for her baby doll and was
a very good girl for the whole service.
She listened intently to the Jesus story Daddy read and picked out
cookies for Santa on Christmas eve.
Her favorite present Christmas morning was the doll and stroller
her big brother, Steven, gave her.
She ate a little cake, or maybe just frosting, at the Jesus
Birthday party at church Christmas day.
She also listened to a story and watched a movie along with
telling Miss Tina all what she got for Christmas.
At Aunt Holly's Christmas afternoon she enjoyed bagging wrapping
paper maybe more than opening presents.
After supper she spent almost two hours playing nonstop with
cousin Annie's doll house - it was so cool!
Monday Aunt Laurie came to fix a meal and play a lot with Karrie
up in her room - tea party, toe paints, and ornaments to make.
Karrie received an abundance of wonderful princess presents and so
far her suitcase on wheels is the biggest hit.
Karrie helped give Buster his much belated Christmas treats and
bones on Monday night.
Tuesday Laura Beth, Charlotte, Ashley, and Morgan came to visit
and Karrie loved the Care Bear magic pen and paper book.
Eating challenges (even though she still has her tube feeding each
night) have made us play race to eat games to get Karrie to eat.
As for big brother Steven, he is doing well. We had a scare though with several health issues in the last couple days. Back several weeks ago his left side of his neck hurt. I felt some lumps and figured it may have been due to the sore throat and sickness he had just had. Then Christmas eve he complained of it again and I felt it again. Mark took it very hard and was very concerned and overwhelmed thinking of what it could be especially in light of what we've gone through with Karrie. Then Christmas night he complained of his heart racing and later how is chest hurt so bad. He laid in bed asleep moaning and holding his chest. Mark got him into the doctor today and thankfully there is nothing to be concerned about. Dr Strong looked him over thoroughly and he seems normal in all areas. He is now 52 pounds. He will be rechecked in two months maybe more for our peace of mind than anything else. Steven acts totally normal most all the time and is busy tormenting his sister and then upset when she does it to him. Sibling love:-) His favorite presents are his snowboard and his radio controlled black and orange Ford truck from Texas. He's not praying for more snow because he thinks we may not get any until next year. (He actually means next December, not just next year 2006). For his sake, I sure hope we get some soon! Steven is also really into games with Parcheesi and Candy Land being his favorites. He's happy to be on vacation from school and staying up later than usual. He also thinks that his homework should only have to be done on Saturdays. Tonight he is enjoying (I hope) his second sleep over (other than grandparents) at cousin Annie's and will be there all day tomorrow.
As for the other three of us tomorrow we will be heading to Cleveland at 7am to start Karrie's pre Bone Marrow Transplant tests. Wednesday she will have a kidney test done which includes an injection and many blood draws over many hours. She will also have her echocardiogram and EKG done tomorrow morning. On Thursday we will be there again in the afternoon for injection, sedation, PET scan and CT. Next week is another two days (Tues & Wed) at Cleveland including a hearing test, meeting with the doctor and nurse practitioner, and meeting with the radiologist. The third week will be for the MIBG which shows any cancer cells and we will go up on Tuesday for the injection, and then go back on Wed and Thursday for the actual scans. We expect to have a bone marrow test also done while she's sedated and possibly a dental x-ray.
Our friends from Children's that we saw last Friday all seem to be doing very well: Taylor, Jonah, and Derek. Taylor should have started round five of chemo yesterday. Jonah was tired and had started radiation. I did talk to Shelly - Megan's mom and she seems to be doing better. The doctors say
that her counts are not coming up because her body is attacking the bone marrow that was transplanted. I believe, she was taken off the ventilator and the pnemonia has cleared or never came. However, Shelly had a long night with a mom they had befriended in PICU a month ago. She stayed up with her friend all night while her seven month old died. Seizures had destroyed her brain and she was not going to survive on her own. The mom thought after the first of the year she would have to make a decision to remove the life support. The little girl decided it was time to go. Wow! Shelly seemed very subdued and almost open to something greater. I told her we would be praying for her, Megan, and her friend. She was thankful. We also met up with Becky and Brian whose son
Samuel was in late October diagnosed with a tumor in his kidney - Wilm's tumor. Samuel will likely lose a kidney. They came in with fever and were hoping to go home the day before Christmas. I was bummed to see that Gage was back in a room on the HEMOC floor. He also had neuroblastoma and is the furthest along in treatment having finished radiation. I was not able to talk to his mom or dad, so I don't know what is going on there. Need to check on them again.
Please continue to remember our friends along our journey in your prayers. We know prayer is powerful and we believe God is the great Physician! May He give them health, joy, peace, and strength in 2006!!! Our prayers need to be focused a bit different for our home time. We feel like we are Job. The testing has been tremendous with the pump problems, lack of sleep (yes, I am up too late, but with good reason and I have not done this for a week), and the health concerns for Steven. The depression, doubt, negative focus, and concern for the road ahead at Cleveland has beaten us down more often then you know. We are in a spiritual battle for our lives as well as our children's. Satan is truly having a hay day with us. God does allow the testing and trials to make us into who He wants us to be. But we often feel that the burden is too much. We must continually leave these doubts and concerns at His feet. We cannot carry them on our own. Satan knows we have had victories, and he knows we are trusting God for the outcome. He does not want us to win anymore battles. Please pray for a hedge of protection from the spiritual forces that are against us. God is greater, more powerful, wiser, and He will win the ultimate battle. Please pray for positive thoughts and for us to seek out where to find the positive rather than allowing the negative to take over. And to be honest, we have struggled with the lack of face time we have with people - our friends especially. Everyone has done and given so much and we are very grateful. We cry when we receive your gifts and we are truly grateful. Although we cannot help but think, we just want Karrie to be completely healed - nothing else matters. But we need to have people standing with us, literally. I know many of you don't know what to say and up until now we have not been easily accessible, but the truth is, we just need you to stand with us and just listen maybe. We are looking forward to quality time with our friends during these next few weeks while Karrie is healthy and being away from her or out with her will not do her any harm. And of course, please pray for Karrie as she undergoes all these tests. I hope they can use her central line for most injections and blood draws, but there will be a few that she will need another poke and that won't be fun. Also pray for our new doctors, residents, nurses, etc. that will be caring for Karrie these next couple months at Rainbow. Please also pray for our travels. We praise God for all the gas cards that will help make the miles a little easier. And please pray for our rest - quantity and quality.
Well, it's time I head to bed. Tomorrow is coming earlier than I would like. I do enjoy writing and could actually go on longer. Thank you for praying and loving us. Hope everyone had a joyful Christmas. May your new year be filled with much peace and hope. We love you!
Monday was a good day for Karrie. Uneventful healthwise and busy otherwise. We waited all morning to find out how her counts and cultures were. Counts still zero on ANC and a negative culture. Wait another day. They were talking going home in a couple days with the IV antibiotic that needs to run 10 to 14 days. Karrie was up and about more and back to talking on the phone. We had a long naptime, but did not sleep much at first. Daddy came up with a friend from work and once Karrie warmed up to her and received some neat art supplies, she was on a roll! That was very helpful since Daddy was preparing to stay the night and Mommy was totally wiped out from lack of sleep. Thanks Jan for driving me home, too!
Daddy's night was lacking sleep and a little crazy at times. But good news came on early rounds that her ANC was .1, white count .3, and no positive cultures. Karrie was unhooked from her fluids and running free! It was great to arrive and pick her up and spin in circles!!! Daddy headed out and Mommy took over. A volunteer read Karrie five Christmas books while she sat quietly with me. Then we took a walk pulling her in the wagon and then back for a nap. Unfortunately, she nor I slept very little with our nurse turning lights on to do a med. I'm not sure why I keep thinking we should be able to sleep here. We salvaged the afternoon with some ice cream (Mommy's idea) and a Blue's Clues video (Karrie's idea). We headed out with the wagon after that. This time Karrie was pulling it. On a trip back into our room Karrie went splat when the wagon caught on my foot and she flung back onto the handle as it hit the floor. She cried, but not for long, but we found blood in her mouth around some upper teeth. The nurse and resident checked her out and no loose teeth. Our evening included visiting outside Taylor's room, music, baby dolls, phone calls, and visitors. A family of a child who had passed away recently was rounding the floor to give everyone a gift bag and wish all a happy holiday. Wow - what a kind gesture! We also had our pastor and several elders stop in to visit and pray. Karrie finally fell asleep by 10pm, but the nurse has been in two or three times in the last 15 minutes to do blood work and meds. It could be a long night and with lights, too.
Taylor did end up having high enough numbers to do the harvest yesterday and today!!! And actually they headed home a couple hours ago!!!! They will surely have a wonderful Christmas! On the other hand, Megan has gotten worse. She is having trouble breathing and may be starting with pneumonia. She is holding her own for now, but there was talk of her going to PICU. I have not seen her mom, as I am sure she is at her bed side constantly!! Please pray for Megan and Shelly. This will be a rough Christmas for them.
I need to be real and because I know there is power in prayer, I am asking you to pray for me. I am lacking sleep - there is no way to get a solid amount of sleep in the hospital no matter how hard I try. And without that good sound sleep, my muscles do not get the rest they need and that compounds with all the stress and constant care of my little angel girl and I just hurt a lot physically. I also have been very frustrated with the care or lack there of, we have received here. I have to question everything or things are not done as the doctor has said they should be. And today I have realized how synical and ungrateful I have become. On one hand, these people are taking care of my baby and have helped to kill the cancer. And they do it with a good heart and love her dearly. But on the other hand, their mistakes or ways of doing things, even though not all life threatening, have really gotten to me. It's true that the negative is all you see even when there are positives. I am hoping that with us going home tomorrow and being able to get some sleep, that I will have a better attitude and my pain will decrease. But as several has mentioned, January and Cleveland are coming and the six months have really taken a toll on our family and each individual. So please pray for our rest tonight and our home time. Also pray for whatever steps we need to take in order to ensure that I am not in a hospital bed when Karrie is in January. Thank you for letting me share my heart and I thank God for the work He is already doing in me! "The Lord is near to the brokenhearted and saves those who are crushed in spirit." -Psalm 34:18
12-18-05 Sunday Mark's night went ok, but Karrie had mucous up chucks and then a fever about 4am. Although Mark noticed the room was very warm and the room temp was at 80. Not sure who changed it. Doctor ordered a chest X-ray to check for anything they might be missing. Mark and Karrie endured that after some walking and riding time and a nap. Karrie seems to perk up when new faces of people she knows arrive. She was her old self by Saturday evening up at the couch playing with Steven and rocking in the chair hamming it up! She likes to play with the UNO card shooter in the playroom, too. I like the mind of a three year old. Such pleasure in the simple things. She has also enjoyed pushing a grocery cart full of foods and stopping in the hall to talk about certain ones. We realized about 7pm that we had not heard her counts for the day. Upon checking we - and our nurse - found that her platelets were at 10 (down from 36 on Friday)! Oh my! There have been several mishaps that have really frustrated us. The blood draw for those counts on Saturday was not ordered until 9:30am and they are usually done about 5 or 6am. Someone missed it there. Then the platelet count was recorded somewhere by someone, but no one ordered the platelets for Karrie. Another miss! And then it took until 10:30pm until the nurse got them after the pharmacy had them but didn't call. Three strikes they are out! Now mind you, earlier that evening we had a shot to give Karrie for her white cell growth. It was rather frightening when I gave it and she continued to bleed through 4 or 5 things - band aid, kleenex, and gauze pads. We got the nurse who of course was calm and a bit like no big deal. Mark and I were frantic because it wasn't stopping and Karrie had never in six months bled like that. It took a half hour before it finally stopped. Karrie still had the mucous thing coming up several times more. Her sleep was not very restful, it seemed. She would cry in her sleep off and on all night. I do believe I slept good though when I did sleep and may have actually slept through some nurse visits.
Sunshine came in this morning along with a good nurse. Karrie's platelets were up only to 17, but they say it takes longer to see an actual rise in that number. Platelets were ordered right away, but we still didn't get them until 3pm. On rounds the doctor had bad news that her red port (central line has a white tube and a red tube) is positive for a bacterial infection. So it is not in her body, but in her port. She is still on two antibiotics, one of which they increased her dose today. So now we play the waiting game for no fevers and no more positive blood cultures and grow those little cells to fight infection!!!!!! Karrie did the best I have ever seen her do with Dr Hord. She likes the stickers he gives. Cute! Her weight is starting to rebound again but slowly. Karrie eats sometimes and sometimes not. Her tube feeds run every night still. We did some walking today and games and puzzles in the play room. Karrie enjoyed Grandma and Grandpa Richard and Grandma Dodez here today and then we took a nap. She actually let me sleep in bed with her for nap. This has been her no-no for a while now, but she bent her rules today! Steven came up again with Daddy and we had a blast playing pool Steven's way in the playroom.
Our friends here at Children's resort are also needing your prayers. Megan is having trouble breathing and had an x-ray done today. (Karrie's x-ray did come back normal!) They will definitely be here until the new year and her mom needs our prayers. A four month stay I can not even fathom! Taylor is still confined to her room and according to a doctor she will always be quarantined when in the hospital from here on out. Nurses have told them that once the stool culture is negative she wouldn't be confined. Who do you believe? Also they don't believe the harvest number in the bone marrow is going to come up for them to do the harvest. So they will have to wait until after possibly round six when the bone marrow is clear and have the bone marrow harvest done surgically. Needless to say, they are definitely needing prayers of encouragement!!! It is possible that they will go home tomorrow and be there through Christmas. That is a praise!
As for us, we request prayers for no fever, no positive cultures, and that we may be out of here by mid week!!! Cannot help but wonder if this will become something worse since we have really had it fairly easy up until now. Pray for our faith as well. Doubting Thomas is often close by! Prayers for our rest, strength and freedom from pain would also be appreciated!!!! Need to get to bed and hopefully get to sleep. Thanks for praying and encouraging us! We need you!
12-16-05 Friday Yes, we have decided to spend our Friday evening (and at least the whole weekend) at Children's hospital. We just cannot get enough of this place. Or was it that we were going to miss it here when we have to go to Cleveland in January. Actually, little princess Karrie ran a 99F yesterday and then had the shivers this morning when getting ready to go to our appt at the clinic. Well, once we arrived and they heard "shiver", they were ready to admit her. From what we understand a shiver is more of an indication of bacterial infection than an actual fever is. And Karrie has no infection fighting cells to beat anything. Plus her heart rate was up and she needed hydrated. They took blood for cultures and started an anitibiotic and moved us to the floor (5655) about 2pm. We were surprised that she stayed around 99F all day, but late day she had 100F and then 101.8F. So we would have been traveling back up here tonight had we not already been here. And she will likely need blood products tomorrow or Sunday. Karrie almost immediately perked up after a dose of tylenol. She tried to eat and played with a new bear and talked. It is so good to hear her after almost all day of no talk. Mark is here to stay the night with Karrie and I will be home tonight and back tomorrow. Please pray for no infection, no more fever, and a short stay. We should be home for Christmas, but there are no guarantees, so we request your prayers for that. Also keep praying for Taylor whose one count they need up for the harvest is not up high enough. Yet another long stay for her and her family!! Will update more tomorrow maybe.
12-14-05 Wednesday Yes, we are anticipating low counts and fever. Karrie has had her ups and downs the last four days. We are praying for a miracle that her counts would not go so low and she would by God's grace quickly get her numbers back up (not fever numbers).
We did manage to make it home Saturday night from the hospital after chemo ended at 9pm and the flush ran until almost 11:30pm. Steven slept on the couch and wouldn't wake up at first - the eyes open, but nobody home. Mark kept telling him he was needed to push the cart out to the van and that seemed to bring him around eventually. Had we known we would be coming home so late, we would have planned to stay the night. We headed home about 11:45pm and it took us almost an hour in the blowing snow. Yuk! Good to crawl in our own beds by 1am.
We stayed home as a family on Sunday. Karrie was not very active, but talked and ate good. She needed to be held and hugged! Can always do that! We realized that she not only has dark colored peach fuzz on her head, but she also has eyebrows and eyelashes! Wow! What a difference in
her appearance! Cute!
Monday morning she was up early with Steven and Mark. Once again she started out slow and was tired. Her legs hurt so she wouldn't get down to play trains. Late morning she got going and pushed her Emma doll around in a stroller. Grandma Richard was here again so I could go finish Christmas
shopping. Karrie did nap, but not until Grandma read to her every story in Karrie's Bible.
Karrie had a cough early morning on Tuesday, but it was gone once she was up and about. Slow start, but then came down the stairs on her own. And she was up and down those stairs most of the morning. Karrie and I played with her doll house today. How cute and what fun! Once Steven came home and lunch was over, I found the best kids in the world at this house! It was truly amazing! They got along so well and I never had to break up even one fight!!!! Wow! I let them play much past nap time and then Steven slept and Karrie didn't. Even after supper they were inseparable. They
painted together and then sat together in a chair to watch part of a DVD. Now that was cute and yes, I got a picture or two.
Today Karrie had bad belly pains first thing this morning. Mark went to the clinic with us today to check Karrie's counts. Her white blood count is 200, hemoglobin 12.1, and platelets 153. Not bottomed out yet, but going that direction. We will return again on Friday and will likely need some blood products. We had a visit from Santa right there at the hospital. Karrie steered completely away from him, but loved the present she received. A second gift also came that she took home to give Steven. Karrie is not eating or drinking much, took a long nap, is moving much slower, but still perks up like her old self at times. We are thankful for the night feeds, which should help her gain back any weight she may have lost. Steven and Mark had a little fun this evening playing in the snow and then playing board games.
We visited Taylor and Tricia today, but only from the hallway. Taylor had bacteria in her stool, so they are confined to their room because of all the kids on the floor with low or no counts. Taylor had the line put in yesterday for the stem cell harvest, but her counts were not high enough today to do the harvest yet. Hopefully, tomorrow. Please pray for Taylor and her family! As Tricia says, this girl never seems to get a break. Pray for Taylor's body to beat this infection and to grow those white cells, etc. Pray for the stem cell harvest to go well and that the collection would be very good. Pray for her to be strong and healthy, especially as Christmas approaches. Tricia hopes they will wait to do the next Chemo until after Christmas. Please continue to lift Tricia and Jarrod in your prayers - strength, faith, wisdom, peace, and hope!!!
Others to pray for include Megan and Shelly who are going on 4 months at Children's post transplant. Megan is the 12 year old from Wooster. Her counts have not come up much and she has an infection in her colon. However, she is finally walking with a walker after intense physical therapy. Shelly has shared that the bills are coming in and the insurance may be gone soon. Please pray for Megan's healing, their much needed homecoming in January, and the financial burden to be lifted. Gage and Becky were also in clinic today. Gage had a headache and temp of
100F. Not sure if he needed blood products then or not. Hopefully, they were able to go home Please pray for his continued recovery after transplant. Sherry and Derek, as well as, Sophie and Haley were also there for their chemo or counts. All seemed to be doing well. We also met two
new friends, Brian Jr. and Sr. Brian has a type of leukemia and his dad shared with Mark how it all started recently. Please pray for them also as they have begun their treatment journey. Along with your prayers for these friends, also pray for our witness to them and for people to cross their paths that can encourage their faith journey and meet their everyday needs. Not everyone we come in contact with have been blessed by so many as we have.
Check out the web site (www.karriedodez.com) as Cindy continues to develop and maintain it for us. If you have this site as one of your favorites, you may need to retype it to get to the home page first or just use the new tab to navigate there. We hope to have more photos to share in the near
future. Thanks Cindy! And thanks Cyndi and Laurie for the photos! Also check out Lunch for Life.
We continue to request your prayers for Karrie's health and our faith!! We try not to doubt, but 4 out of 5 chemo treatments have been followed by fever and hospital stays. We pray that we can weather this low from home! Otherwise we ask that you will pray us home for Christmas!!!!!
Speaking of Christmas, hope everyone is enjoying all the holiday activities, preparations, and family time!!! For years I've struggled with trying to not get too busy and wonder if I was truly celebrating our Savior's birth. This year even though the world continues to rush by and everyone is shopping and being festive, I don't believe I will have any trouble with truly celebrating our Savior's birth! Without God's gift of His Son to us we would have no hope in this crazy world of sin, sickness, and pain. Please consider taking time from the busyness of the holiday to truly celebrate what God and Jesus has done for you and yours!
12-10-05 Saturday Well, we should have been done two hours ago, but something happened with the pump working slower part of today. So we hope to finish chemo by 7:30 and then wait on a 2 hour flush. Oh, just found out that the chemo still is not done, so we will be en route even later than anticipated. It will be good to go home as a family, but late nonetheless!!! Steven was so excited to be able to come bring Karrie home. He always comes and draws our family on the board in Karrie's room. He knows there should be four (five including Buster) of us together at home!!!
Here's highlights from our Friday and Saturday here in the Children's master suite:
Karrie slept in on Friday and woke for meds kicking and fighting me because she didn't want them.
Her breakfast order was missing a pancake and I had to pacify with a bagel and peanut butter, that she spread herself, until the fresh pancake arrived. She did say after eating some of it that her and Steven only like Grandpa Richard's pancakes. She also managed to spill syrup all over herself. But that sweetness didn't soak in, she was cranky a lot. Taylor, Tricia, and Grandma Jo came to visit, but Karrie wasn't in a good mood and Taylor didn't feel good. Not the same two girls we enjoyed last week. The mood changes are amazing though! Karrie is crying "I want my Daddy one minute!" and then she is saying, "Mommy, I love you!" and "Mommy, you're my best friend!" the next minute. I love her the same, but it does wear on me! We tried another long nap, but it didn't last long enough and Mommy didn't sleep. Karrie watched Barney Christmas video and laughed heartily when Santa woke saying HO! HO! HO! She repeated it and laughed again! Daddy and Grandpa Richard arrived and then I got to go home. Glad Dad came to drive me home. I was so sleepy and hurting. It was so good to see Steven who had spent the day with Grandma and Grandpa Dodez. Mark and Karrie had a very uneventful night since the one med only ran two nights and this was the third night. No every two hour diaper changes. Lucky dog! But then again, I slept so good in my own bed.
Saturday has been mostly uneventful. Taylor and Jarrod came to visit before lunch. Karrie took a short nap, wanted no video or music, and laid in bed all day. Karrie didn't eat much until supper and then ate very well. I think she missed me! Ha! Ha! Steven and I did things around the house. He even swept the living room for me! We also had to work on some school papers and run to town before heading back up to the hospital this evening. We've visited with Taylor and family a couple times, but Karrie wanted to go back to her room. The chemo continues to run and we still are not done and we still have a two hour flush after the chemo finishes. Our plan this morning was to be on the road by 8:30pm and now it looks like 11pm. Karrie has gone to sleep and I'm not sure who else will join her next, Steven or me.
Taylor did have a positive blood culture, but it seems to be something to do with the big mouth sore she has. They will be here through next week because they will do her stem cell harvest starting on Wed. Taylor had her little smirk back today and Tricia and Jarrod sounded more upbeat. Please continue to lift them all in your prayers.
As for us, we just pray we will be home before tomorrow! We are now told that the flush could take three hours. So maybe we will leave by midnight. Oh well. God is still good!!!!! This week could be slow with Karrie's counts going down and needing blood products. We will likely be battling a fever within the week. We don't doubt that it will put us back here for 5 to 7 days as long as there is no positive culture, then we would be here much longer. So continue to pray for Karrie's strength and ability to bounce back from yet another low. We ask for your prayers for Mark, Steven, and I as well. Physically, emotionally, and spiritually we struggle every day. Pray us home for Christmas!!!
Thank you all for all you do each day!!! We are still amazed at the support and love we have been given since day one. Thanks again!
"They that wait upon the Lord shall renew their strength." Isaiah 31:40
12-8-05 Thursday Hello from Akron and our master suite 5653. We are surviving and despite complete exhaustion feel I should give an update. The prayers are still needed! The physical exhaustion from lack of sleep and constant tending to Karrie has really washed me out these last two days. I am thankful for the many who have wished me rest and I ask for more prayers on that. Steven and I are both battling sore throats and that adds to the exhaustion. Many of you say I make you tired just hearing what all we do and now I am admitting I am so tired. If I can make this quick, I will.
On Monday Karrie had a snotty nose with color which usually means an infection. That lasted through Wednesday, but without a fever it didn't sway the schedule of chemo going forward. And likely the chemo will wipe that out, too! Karrie has done really well with her tummy and surgery recovery. She had pain for maybe a few days and then not much complaint about it. Karrie was active and playing her usual favorites. It was cute when she had to go potty and sat there singing a while. When I asked her if she went yet she said, "No, it went to sleep!" Grandma Richard stayed with the kids for the afternoon while I got to go start the Christmas shopping. That evening Steven had his first school program and sang Christmas songs. We chose to keep Karrie home, so Daddy and her had some fun together and I went to watch Steven.
Tuesday we ventured to the dentist for the first time. She did well until the dentist came in and started checking her teeth. She was on me in the chair and we had to hold her down while she screamed the whole five minutes. This dentist visit is required for the BMT (bone marrow transplant) that we will be doing at Cleveland. The other big deal for the day was - KARRIE HAS PEACH FUZZ!!!! How cute! It had been six weeks without chemo and her hair started to come back. Steven, Karrie, and I enjoyed coloring together after lunch and playing games before supper.
We headed for Akron on Wednesday and had a quick move through the clinic and to the floor by 1 pm. Much delay with lack of staff so the chemo still didn't start until 6pm. This round runs one med 72 hours straight, one 6 hours every night with every two hour urine check, and one in short intervals during the first several hours each night. Her counts were good and weight also. We had an excellant talk with Dr Patton, Karrie's oncologist. She answered lots of questions. She agreed that the MIBG that finds cancer cells would find nothing now. She even gave us a little hope in that Karrie's treatment and response to it has been the best we could hope for. Although she also shared reality that we still have the high dose chemo and transplant to get through. We enjoyed a fun evening with Aunt Cyndi who took 50 plus photos. Hope to see some of those on the web site soon. Our night was long with every two hour diaper changes and the nurse in and out (thankfully no overhead lights and she's using a flashlight - prayers answered!!!), machines beeping, and meds running. Lack of sleep is a good title for it.
We were up today at 8am with a soaked little girl. She was a very cranky, somewhat mean, whiney, and only Mommy will do for little princess today. It was rough to say the least. We did enjoy a visit with Tricia, Jarrod, and Taylor who were in for counts and blood products. It ended up being a long day for them and Taylor's temp is rising. Please pray for them!! Taylor should be doing her stem cell harvest next Tuesday and she needs to be well for it. By 12:30 Karrie was out and slept for 3 1/2 hours - much needed sleep. This was an instant answer to prayer that one of our prayer warriors had been working for us at that time!!! I tried to sleep and maybe did a little. We were thankful that the staff stayed out and didn't have to come in for anything. If only they could do that at night! Grandma & Grandpa Richard came to visit along with Mark and Mike. We had a rough go of it at times with Karrie continuing to be mean, cranky, and not letting anyone help her but Mommy. Sorry Grandma!!! She did get ready for bed easily and was the sweetest thing. She sang a song about Steven being her bestfriend! How cute! We miss him! He did have a rough night last night also, but so far today went ok.
I did find out today that our tests and such will be scheduled over about 5 days up at Cleveland between Dec. 27th and Jan. 5th. We could start the high dose chemo somewhere between January 9th and 21st depending on the tests, review of them, insurance approval, etc. Please begin to pray for this as we have much apprehension about the drive and especially what that chemo will do to Karrie!!!! Help us remember that God is in control and we can trust Him completely with Karrie's life!!!!!
Well, that's as short as I could do. Please pray for our rest tonight!!! Please pray for my endurance for the night and day ahead. I hope to return home tomorrow evening and Mark will stay with Karrie so I can get some sleep and they can have some together time! We will hopefully all come home on Saturday evening once chemo ends around 8 or 9pm.
Thank you for praying and the encouragement is always at the right time!
12-5-05 Monday December started early with light-happy people: nurses and then a surgery resident around 7am. Karrie slept through the nurses, but the resident didn't fair so well. Karrie's nurse that day was really great though, very enthusiastic and loud. I think Karrie liked her, or maybe she just didn't know what to think. Late morning Karrie took a ride in the wagon. It's a challenge to push/pull a wagon and an IV pole. Fun! Karrie got very cranky and seemed tired. I encouraged her to do some standing by the couch and she screamed and cried, more from doing what she didn't want to do, I thought. The medical plan for the day was to stop the epideral pain meds and start oral pain meds. Pain management came before we took our wagon ride, but no oral meds had been given yet. I noticed after Karrie's crying fit that her epideral was turned off. Oh my! I called the nurse in and here pain management had turned it off, but the order for the oral pain meds got lost in some paperwork. We quickly got the pain meds in her and she was a totally different girl - much happier. We also had a nice visit with Tricia, Taylor, and Grandma Jo (Taylor's G-ma), who brought Christmas gifts for the girls: Dora dolls and Doodle pads. She is such a sweet lady! Taylor and Karrie were quite delighted with their new dolls! Later that afternoon the epideral was removed and then several monitor wires were taken off. We were surprised by the arrival of Aunt Holly and Grandma Richard. Aunt Holly took on the enjoyable task of making Karrie walk a little. She screamed and cried, but not so much from pain, we believed. She was fighting us and using those tummy muscles with all her will!!! She was quite the cute grump riding around in the wagon for a while:-) Dr. McCollum finally came about 3:30. Karrie fought us some more, but he was able to remove the bandage and the drainage tube. It looked good to him. It looked huge to me!!!!! The incision is probably 10 inches across her belly. Wow! After nap we had visitors and supper, but Karrie really wasn't very happy much. I was on the nurse to get pain meds as soon as the shift changed and then she was again a totally different child. After our visitors left, I got Karrie to walk into Taylor's room. Then Taylor and her painted their toe nails and finger nails with mommies helping, too!!! They were so cute! From there Karrie did a lot of walking - back to our room, up the hall, and to the kitchen!!! She was so happy back at our room that she sat on the bathroom throne doing her business and singing Barney's I love you and other songs she made up. How funny!
The night was long with Karrie talking and crying in her sleep some and Mommy trying to keep the pain meds coming if needed. Once again a surgery resident blessed us with lights on at 6:45am. Karrie let him know she wasn't pleased!! However, that did not stop her from sleeping away the entire morning. Mommy packed up and had some down time until Dr McCollum came to give us the go home words. She is not eating very well so we will need to get the NG feeds going again at home. He doesn't believe she needs much pain medication, but we are allowed to use tylenol if needed. Karrie does have three layers that are stitched closed. We are so thankful for such a compassionate surgeon!!! Karrie might even like him. She did get up and walk with me to the kitchen to warm her pancake. Taylor and Tricia came to visit and the girls played with baby dolls. After getting some lunch we visited again with them in their room. The girls were a hoot!!! Both eating popsicles, giggling, and such! We took a walk to the playroom and nurses were just loving those two cuties together!! It was nice to have Tricia there to watch the kids if I needed to do something and visa versa. Plus as the girl's friendship grows, so does our's!!! We waited three hours for our wonderful surgery resident to write the release and home care orders so we could go home. It all worked out since we had the afternoon to spend with Tricia and Taylor. It was the least impatient waiting I've done in a long time!!!
Once we arrived home Karrie said, "Mommy, I'm so glad to be home!" Amen!!! We decided to go out to eat as a family - a first for a Friday night for a long time! We should have thought better of it, because Karrie was very miserable and in pain once we got there. She did eat quite well, but sat on Mommy's lap mostly.
We have given Karrie tylenol each afternoon or evening for pain. And she has a runny nose and cough sometimes. Karrie was glad to stay home all day Saturday. Our children continue to show love to each other by struggling with sharing and talking not so nice to each other. Oh, I think they missed each other! As for me, Saturday was another very emotional day. The biggest struggle I think was how Steven treated me and how he seemed to not care whether we were home or away. I know he is only six and is dealing with this all in his own way. Plus, it is probably difficult to come back under my rule after having so much fun wherever he went. And being on the go all week and then being stuck at home all day, probably isn't an easy transition for him.
We've enjoyed some very good nights of rest. But compared to the hospital anything would be better for me! Karrie stayed home today with Daddy who was fighting some muscle pains. Mommy and Steven enjoyed church again! Yes, Steven told me how he went in and played the whole time in class again!!! I'm so proud of him for coming out of that phase he was in. Our youth minister, Scott, had an awesome message and then we celebrated a baptism of a young girl (Macy) and Karrie's good news!!!!! Steven was happy to go play in the snow this afternoon with the neighbor kids: Jonathan, Avery, and Lena Beth. We finished decorating the Christmas tree and had some good family fun and laughs tonight.
So that's our life from the last few days. We continue to ask for prayers for Karrie and us as we continue the treatment protocol. Karrie starts chemo on Wednesday again. This is the last round at Akron before the high dose chemo and transplant that we will be at Cleveland in January. Please pray for her incision to continue to heal and that there be no infections or problems with it. Please pray for the pain to subside. Please pray for Karrie's strength and health through this next round of chemo. Also pray that we will be home for Christmas, because we tend to go back to the hospital for fever when her counts drop and her counts will drop the week prior to Christmas.
Please also pray for Taylor who completed her 4th round of chemo and is home now. They did receive word that the FDA has stopped the purging of stem cells. Taylor has cancer cells in her bone marrow and will have the harvest done this month. They had chose to go ahead with the purging and now that has been put on hold. Taylor's tumor is in her liver and that again is another concern as surgery will be around the corner in January probably. Needless to say Taylor has had a lot of rough roads on this journey and we need to pray that God will deliver her and heal her with the treatment available and by His mighty hand. Also pray for Tricia and Jarrod to have peace and strength as the road narrows and the journey becomes filled with more obstacles. Please also pray for Tricia and Grandma Jo and family who have lost a grandma and mom last Friday. We are going to miss our good friends when we head to Cleveland next month:-(!!!!!!!!
We are still praising our Heavenly Father and Jesus Christ for removing the tumor and the pathology results that are very hopeful!!! It is such a relief to have that part over and yet another bittersweet moment when looking ahead to the challenges before us. We must endure to give Karrie the best chance of survival and no recurrence of this nasty cancer. Thank you for your prayers - we need them everyday!!!!!!!!! We praise God for each of you!!!
"The angel of the Lord encamps around those who fear him, and he delivers them." -Psalm 34:7
"The Lord is near to the brokenhearted and saves those who are crushed in spirit." -Psalm 34:18
11-30-05 Wednesday Our first night went ok with Karrie not needing the breakthrough pain med very often. She last had it at 3 am Tuesday morning. Her epideral must be giving enough to keep her comfortable and pain free mostly. She told me "I love you!" early that morning and we talked about Daddy coming later that day. Her bandage covers from around her right side to the left front of her tummy. Much bigger than what I realized on Monday. Karrie noticed it was getting light out after 7am Tuesday so we got up for the day. Our schedule for Tuesday was two videos, two books, sleep, two videos, two books, and sleep again. She claimed to have no pain except when she was rolled over for the nurse to look at her epideral. On Tuesday her catheter was removed and the suction on her nose tube was taken off. She was allowed a popsicle or beverages. She woke crying from both naps and took a while to calm down, but again no pain she would admit to anyway. She beamed when Daddy came Tuesday evening. Tuesday overnight was a bit rough with Karrie being very restless and not happy when awakened by the nurse and the lights. Needless to say and hour of sleep at a time took it's toll on both of us. We did give Karrie some meds to calm her about 4:30am. I didn't think to ask them to give it to me, too!
The resident was in before 7am today - what is he thinking? They have no info for us, so why must they disturb our precious sleep? See this stay is strictly surgical, so the oncology department is not doing anything with Karrie other than saying hello. Not sure if they charge us for the oncologist on rounds to come in and say hi. Wonder if the insurance would pay it if they knew what took place. Insurance, now that's another story - they denied payment for a stethescope that homecare supplied us for Karrie's NG placement check. Oh well, at least they are paying the big bills so far!
Karrie had a visitor while Mommy was in the shower this morning. I don't know what prompted me to ask, but I asked her if anyone was in to see her while Mommy was in the shower. She said yes. I asked who, the nurse? No. Was it Dr. McCollum, the surgeon? And she said Yes. I didn't fully believer her, but then the nurse told me later that he was in and asked if he could talk to her and she shook her head no, so he left. How funny! The nurse helped me wash Karrie as she screamed at the top of her lungs, "I want my Daddy!" But I think she felt better afterwards all refreshed! Taylor and Tricia came to visit and paint Taylor's finger and toe nails. Karrie said maybe she would do it tomorrow. Taylor is in for chemo #4 and I praise God along with her family at how good she looks and has been feeling! The road ahead is scary with her tumor inside her liver. We will need to cover them fully in prayer when Taylor has her surgery in the next couple months.
We continued with movies and waited for her full liquid diet lunch tray. Waited for almost two hours - Can you say Cleveland? If you remember that when at Rainbow we had several food service waiting for food problems. Finally it came, she ate yogurt and then we took a nap. Tonight in between visitors, to whom she did not give many happy smiles to, we had a visit from Dr McCollum, the surgeon. We have the full pathology report: The tumor removed was 95% DEAD TUMOR AND THE OTHER 5% WAS VIABLE TUMOR BUT WAS ENCASED IN THE DEAD TUMOR SO THAT IT COULD NOT HAVE SPREAD. THE RESIDUAL TUMOR OR SECONDARY TUMOR AREAS THAT WERE ALSO REMOVED AROUND THE IVC & RENAL ARTERY AND ALSO THE LYMPH NODES CAME BACK ALL NEGATIVE. HER BODY IS CANCER FREE! PRAISE GOD!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
He will remove the bandage tomorrow, the oral pain meds will be started, the epideral removed, solid foods started, and up and moving encouraged with hopes of being out by Friday. We asked Karrie to tell Dr. McCollum thank you and he said that she could tell him when she turns 16. Wow! I pray that day does come!!!!! I told Karrie several times that we would have to be up and moving tomorrow and she looked at me with a frown and a no way nodd. But about 8pm I asked her if she wanted to go for a walk. And she said yes! I carried her and then Daddy did. But at least she got up and out of her bed and her room for a little while. And the feeling of holding her again was so wonderful!!!! I hadn't held her since I gave her away before surgery on Monday.
She is fast asleep and I am heading there next! Thank you once again for the prayers, love, e-mails, visits, calls, support, and encouragement! Our hope continues in our Lord Jesus Christ and we depend on your prayers to our Heavenly Father to get us through this recovery and on to the rest of the treatment. We need each of you!!!! Thanks for doing all that you
do!!! Hug your loved ones close!!!!
11-28-05 Monday As many of you know already we are praising God for His great work in Karrie today!!!!!!!!! We handed Karrie off about 8:30 am as she screamed "I want my Mommy!" The child life person took her and reported back that she cooperated well, but let them know vocally what she wanted. She went to "sleep" without a problem. It was definitely the hardest separation yet for Mommy and Daddy!!! We were very blessed to have many family and friends to sit and wait with us. We enjoyed some laughs and struggled with tears as the time of waiting increased well pass the two hours. Surgery did let us know about 11am that they were still working to retracting the tumor. So we continued to wait.
About 1pm Dr McCollum, the surgeon, came out to let us know the surgery was done!!!!!!!! AND PRAISE GOD... the tumor was removed and the kidney was left alone!!!!! They took a sample for the pathologist to examine during surgery in order to determine the path to be taken. The tumor and scar tissue was still very intertwined with the vessels of the kidney and the renal artery. If the tumor was dead, then leaving the kidney and taking all the dead tissue he could would suffice. But if the tumor was still active, then in order to assure it not growing again, he would have to take the kidney also. The prelim patho report showed it to be dead tumor. Praise God!!! We all prayed for God to remove the tumor and He did - it is no longer the active tumor that sent us on this journey. We still have to wait 5 days for the final pathologist report. The incision was quite big because they had to open her a lot to get it all out. Sorry, I don't have a measurement though. She did lose some blood - actually given a whole bag. Again, don't have an exact amount. Her breathing tube was removed and no trip to ICU for a ventilator! The tumor was removed in pieces which I think the surgeon said size wise was 5 to 6 cm and then more around the vessels and artery. Karrie did have an epideral which she will have for another day or so. The surgery was complex and Dr McCollum called in another surgeon to help him since it was so tedious.
Karrie was awake and crying when we got back to her in recovery. There was a little bit of time lapse when moving her from surgery to recovery that she was in need of pain meds, which they gave her and she eventually calmed down and slept some. And other than some pain when moving her to check things, she has done very well. Sleeping mostly, but talked a little and nodded her head for yes/no questions. She knows when she is in pain and tells us and the nurse! We hope to get a good night's rest!!!!! (Notice it is early and I'm going to bed after this!)
Praise God for His miracle working in Karrie! We are so relieved to have this day behind us! And to come away with such an awesome report! We need to pray that the final pathologist report clearly declares the tumor dead! Also pray for Karrie's pain management and recovery! We are so grateful for all the prayers lifted for Karrie today and for us as well. Brother Steven is doing fine also. He enjoyed his first sleepover and when told about Karrie's surgery by Aunt Cindy, he asked, "What is she doing now?" Aunt Cindy told him about her resting. And he said, "Ok!" and was off to play. Be sure to ask Mark if he slept any tonight, as he may have let Steven join him in our bed. Steven tends to kick and move all over the bed.
We will be here until probably Friday give or take a day or two. We don't know if we will move right in to round 6 chemo or go home and come back next week. We do still have to continue with the protocol in order to give Karrie the best chance of the tumor not coming back. Thank you again for everything and we look forward to visits, e-mails, and calls. We love you! Give God the glory for the great things He has done right before our eyes!!!
11-27-05 Sunday Just a quick update before we go for surgery tomorrow. I know you're saying, "She's said quick before and it never has been yet." Well, I have 40 minutes until I need to be in bed since we have an early day tomorrow. So I will do my best to keep this short.
Our Thanksgiving dinner at Mark's parents was very nice. Aunt Laurie and Grandma and Grandpa Richard also joined us for a great meal. Karrie ate mashed potatoes and chocolate cupcake. Sounds like a healthy meal. Friday and Saturday were home days. Friday included games - hide the Care Bears is a new one Steven and Karrie came up with, play doh, books, nap, and Aunt Laurie. Karrie loved taking photos with Aunt Laurie's camera and then looking at them again. She did drink more which is good. Saturday included more playing and Steven and Karrie had to share Daddy. He would be in the living room playing dolls with Karrie and then up in Steven's room playing cars with him. Steven and Karrie also helped Mommy decorate for Christmas by putting up clings and setting up the manger. Oh, the wonder and joy of children!!!! That evening we went to Grandma and Grandpa Richard's for pizza and cards and playtime with the cousins. It was a good diversion after an emotional day at home. Today was our third Sunday in a row to church together as a family!!! Karrie asked Daddy to stay with her in class and Steven did well again going into class and not sitting in the corner the whole time!!! We were blessed to share in prayer for the upcoming surgery with our church family. We enjoyed a day together at home. No naps, a few fighting/arguing children, games, packing, and decorating the Christmas tree were how we spent our last day for a while together.
Karrie is strong. Eating well and drinking more than before. She is always busy playing with bears, dolls, or trains. She loves to have books read to her and she enjoyed some wrestling time with Daddy, too. We've talked about the surgery and she knows what is going on. We ended our day with a family prayer while we all helped put Karrie to bed. Steven sang Barney's "I love you" song to Karrie and we all prayed around our circle. Steven got to go to cousin Jarret's to stay overnight since our morning departure would be quite early for him. He struggled with this a week ago, but he has thought about it and is ok with it now. His main concern was he didn't know what they ate for breakfast and he likes to eat different things and was afraid they ate the same thing every morning. Funny! So far no call to come get him!
Mark and I are struggling!!! We are trying to trust God that Karrie will be ok, but we are scared that she may not be. His plan is best and we must have faith that God will sustain Karrie through surgery and everything yet to come. We need to take one day at a time and stay focused on Christ and let Him carry our burden. It has been really difficult decorating for Christmas and not knowing how many Christmases she will have with us. But then again, God only promises each day we wake and no more. None of us are guaranteed the next holiday. So pray for us. We know the right things, yet our emotions are raw and we can easily slip from our focus.
"The Lord is near to the brokenhearted and saves those who are crushed in spirit." -Psalm 34:18
"Be still and know that I am God." Psalms 46:10
We plan on heading to the hospital about 5:30 am and will hopefully know by 7am if the surgery is a go or not. We will let many know if it is cancelled. Otherwise, we will let you know when it is over. Please pray for our travels as well as our family and pastors who will be traveling those early hours. Please pray for Karrie's health, strength, and recovery. Please pray for the surgeon's steady hand. Please pray for the surgery to be uneventful and the tumor removal be straight forward. Please pray that the tumor can be removed without taking the kidney or injuring any other organs. May Jesus hold her close and protect her life!!!!!!!!!
Thank you for your love and prayers! I'll leave you with some words from Karrie on Friday and Sunday. Good night!
While eating pumpkin bread Karrie said, "Cyndi Pizza Man makes good these!!"
Karrie needed another band-aid on her finger and said, "I can put it on myself. Did you know that?"
Daddy finished a call with Grandma Dodez and Karrie said, "What did Grandma said?"
Daddy missed counting something correctly and Aunt Laurie said Daddy was confused. And Karrie said, "Daddy you're fused!!"
Karrie, Steven, and Aunt Laurie headed upstairs to play cars on the track and Steven said, "I'm so excited!!" Karrie said, "I'm so exciting!"
We praised Karrie for drinking more and that it would help her not to be constipated. And Karrie said, "I poop better!"
Today she kept telling Mommy, "You need to get Christmas up!!!" (Mommy needed to put the Christmas tree together.)
11-24-05 Thursday Holidays take on a different feeling when a loved one is or has been sick. The celebration becomes more like the original meaning when the holiday was first thought of. With commercialization, shopping, and love of food and things we have lost the true meaning of not just Christmas, but Thanksgiving, too. These last five months have opened our eyes to what true thankfulness is all about. And yet, thinking of the many ways people have blessed us we do not know how we can possibly be thankful enough. We are thankful first of all for the gift God gave us in His Son, Jesus, as a tiny baby that first Christmas. And as for our baby, who isn't so tiny anymore, we are so thankful that medicine, doctors, prayers, and God has allowed us to have her home with us for this holiday. We are thankful for the trade off of 17 days of shots for 17 days of a healthy, energetic, happy, talkative, animated, and beautiful little girl. Karrie has been enjoying life and finding that joy in the simple things of life. We could really learn a lesson from her and many other innocent precious children.
Our week since I last updated has been somewhat busy. On Saturday Karrie, Aunt Cyndi, Grandma Richard, and Mommy visited Amish Country. Karrie ate the best we've seen for a while at the Der Dutchman restaurant. She usually eats a hotdog without the bun, but this time she easily chowed down half a dog in the bun. She was quite the happy little lady walking hand in hand with Aunt Cyndi. With a skip in her step, you wouldn't know she was in a fight for her life. Steven and Daddy joined Grandma and Grandpa Dodez on the train hop where they visited several houses where train layouts were set up and running. Saturday evening Karrie and Steven kept cousin Ashley quite busy while Mommy and Daddy got out with some wonderful friends. (Thank you Steve, Judy, Deb, and Jack! And sorry Jack if you ended up being the entertainment. We did have a fun time!)
On Sunday we enjoyed our second Sunday in a row going to church as a family. Karrie chose to have Daddy stay with her in class and she was busy playing and having fun. That evening we dropped in on our new neighbors, Chuck, Shannon, Corey, and Matthew. We had not had a good opportunity to visit with all of them with our hospital and sickness schedule and Shannon's work schedule and pregnancy. Little Matthew was born on Oct. 25th and I got my baby fix holding that precious bundle! Chuck and Shannon and their boys are an answer to prayer. We prayed for a young family with children to move in next door. Corey is also three years old and the kids play really well together.
Monday morning Karrie chose to sleep in and didn't wake until after 10am. Then after a bath we took off for Wal-mart. I dressed her to maybe get in to have photos done there, but of course they were too busy. However, we did come home and set up our own photography session. She sat in front of the fireplace with a special purple bear from Emma and her favorite pink hat on. After taking three or so, she said, "Mommy, take two more!" Gotta love her!!!! She's so beautiful! That afternoon we went to Aunt Holly's to mess up her kitchen and make Christmas cookies. We didn't know how well Karrie will feel in December, so Holly suggested we do it now while she's feeling good. Karrie lasted longer than Steven at cutting out the cookies. She really enjoyed making and baking with Aunt Holly! Then she ran off to play dolls with cousin Annie! The kids did come back for a short session to eat and decorate a few cookies. It was actually good creative therapy for me. Thanks Holly!
On Tuesday Karrie enjoyed a couple hours at Grandma and Grandpa Richard's while Mommy went for a much needed massage. Karrie told me when we were leaving, "Mommy, I had fun!" It is so good to hear that from her! That evening we went to Acres of Fun with the Munseys. The kids had a blast in the play area. Steven chased Kayla and Karrie loved to bounce and slide. She also crawled through the pink tube a lot. We chowed on pizza and nachos and even a hotdog. Once again she ate very well. Karrie did well until the very end when she fell off the ball pit and hit her head. It is such a helpless feeling when no matter how hard we try, we cannot protect her from everything. Steven obviously had a great time,
because he asked several times which night he would be going there again. Mark and I really enjoyed a time of sharing with Brian and Roberta. Thanks friends!
As for Wednesday we returned to medical reality and headed for the clinic. We were surprised to hear that some of her counts have actually went down rather than up like we believed they would: white blood count 3.0 (was 5.9), hemoglobin 9.8 (10.5), and ANC 2.2 (4.0).Her platelets did go up to 216 from 78, but still not in the normal range of 250 to 550. And her weight increased from 31 pounds to 32.7. Right away we are questioning if the surgery is on for EARLY Monday morning or not??????? Well, from the oncologist's view, which was not the surgeon's view last week, we will go forward with the surgery because the numbers are all normal. Karrie's surgeon is out of town this week, so we have no way of contacting him. I did call his office and the surgeon covering for him did say the counts are low, but there will be no way to say for sure until they draw another CBC (complete blood count) on Monday before surgery. We are told that Karrie's surgeon will check the computer for her counts while away. So we hope that he will contact us by Sunday night, if he is not comfortable with doing the surgery with the present counts.
It's now Thursday and we are cherishing every moment as a family of four!!!! We had fun watching some of the parade on tv with the kids today! They loved Dora and the Disney characters, too. We will be heading to Mark's parents in a little bit for a nice Thanksgiving get together! We were glad to stay home and stay in out of the cold temps today! Brrrrrrr! Steven was sad that we didn't venture out to play in the snow. Hopefully, a warmer snow day coming soon! He loves throwing snow balls at Daddy!
A quick update on our cancer friends: Jonah is back in the hospital with an infection. He will have to be in for 14 days, but I don't know when he went in. He may be spending his birthday in the hospital (29th). Taylor got to go home earlier this week. I do not know how she is doing, but no news is good news, I guess! Tricia and Jarrod are probably relishing home time and family time before their next chemo which will probably start this Tuesday. Gage was doing good when we saw him last week. Haley, Derek, and Diamond were all in clinic Wed. and all had smiles to share - feeling good and doing well! Megan is still in the hospital and going on 3 months. She is doing better, but a bone scan has shown too much calcium which could mean another tumor. Megan is the 12 year old from Wooster. I got to talk to her mom, Shelly. Please pray for all these special people. May the children find strength and comfort and be healed and may their parents know God's strength, peace, and joy during these trials!!!!
We again say thank you to each of you. Many e-mails, cards, gifts, meals, and prayers have touched our hearts. We know God is working out His plan. Please continue to pray that Karrie's kidney may not need to be removed, the surgeon will be able to remove all of the tumor and cancerous lymph nodes, surgery will go well, and Karrie will be returned to us afterwards and be able to recover quicker since she is stronger. Please also include me in your prayers. My neck and back needed chiropractor work yesterday and I was in a lot of pain. I actually think I am a whimp when I look at Karrie and think of all that she has been through and yet so gracefully. Bless her heart!!! She even tries to take care of me!
We are so grateful for your prayers! We love you all! Happy Thanksgiving!!!!!!!!!!!
11-18-05 Friday I have already started to reap the benefits of the postponed surgery. Playing doll babies has never been this much fun! I thoroughly enjoyed Karrie this morning and look forward to another week of enjoying her good health and wonderful personality!!!!! I know she is going to bless so many people in the next week or so! I hope you get to be one of them!
As for surgery, I called today and Karrie has been rescheduled for Monday, November 28th at ... (UGH!) 8 (UGH!) AM (UGH!) Which means our van needs to be heading north by 5:30 AM (UGH!!!!!) And that means we will have to wake our sleeping beauty when it is dark and she will not be a happy camper!!! UGH! Steven is off school yet that day, so we will have to work out that plan also - maybe an easier plan than if he had school that day! UGH! It will be a challenge, but at least we have plenty of time to prepare. And we have more time together as a family for now!!! I am cautious though about thinking this will be an easy week ahead, because there always seems to be another bump in the road right around the corner. It could be Steven's cold - his cough has gotten worse and Karrie's nose is not running clear mucous much anymore, but is running yuk. So we'll just trust God to get us through whatever comes our way:-) Our other source of anxiety is that the surgeon is on vacation next week and not back in town until the 27th, with his office closed for the holiday, Thursday through the weekend. We check counts at the clinic on the 23rd and he is sure they will be up since she is not on chemo, and Monday will be an easy go forward. We just hope we don't make the effort to get there early and then be told the surgery is later or rescheduled. Hopefully, they will let us know any changes on Sunday, if possible. Can you tell I am a very scheduled person? I need to know when and not have any changes to the plan. I guess that is something God is trying to change in me. Mark and I often say when we are made aware of special events that we won't know until that week or days before if we will be able to go. Our only schedule is sticking to God's plan and getting Karrie well again!!!!!!!!! And really that is all we need to do. The rest are details that we don't need to concern ourselves with since God is in control!!! This is a lecture to myself - I needed this! Thanks for listening!
We have many possibilities for plans tomorrow - Aunt Cyndi visit, Amish country lunch, Putt n Stuff requested for weeks now by Steven, Train Hop with Grandpa Dodez, OSU vs MI game, and Taylor's Benefit in Louisville. Speaking of that, Tricia said the benefit will be at the Eagles in Louisville from 7:30 to 11:30. Let me know if you need directions. I will try to make sense of them for you. Not sure what the day will hold for sure, but we plan to enjoy every minute of it!!!!!!!! Hope you have a grand weekend! Keep God first in your plans! We love you all!
"Let the peace of Christ rule in your hearts." Colossians 3:15 (I believe this verse from my Wed devotion this week and all your prayers is what gave me such a calmness for the surgery that didn't happen yesterday!)
11-17-05 Thursday Well, for those of you who don't know or maybe you know enough to be dangerous, here is the scoop on Karrie's surgery being postponed. We actually got a call after 9am today saying Karrie's surgery had been moved up to noon and we were to be there ASAP. For only the second time in 5 months I was running on time and now they are going to make me look like I'm late again. But amazingly I was very calm and had a lot of peace for the day. God was already hard at work thanks to all the prayers. So we get to the surgery registration and Karrie knows this is a new place and she began to get clingy and fearful. The surgeon came out and said let's go talk and we went in a private room. He told us that "this" is not a good idea. He saw the 24,000 white count from Monday and received misinformation from Wednesday that her counts were 15,000. Then last night he found out the counts were actually only 5,000 and that she had just come off of the white cell growth shot on Monday. He talked with Karrie's doctor last night and she was ok with those counts and surgery. He told us that he did not sleep well last night thinking about Karrie's surgery and that complications will likely arise with her body not ready for a major surgery. And he was real - his eyes teared up as he was telling us all this. He apologized, but said this is a child we are talking about and we knew that he has young kids of his own. He also apologized for the inconvenience, but believes that she needs to be stronger physically before having this surgery. The surgeon is on vacation next week and his surgery days are Wed and Thurs and that would be the holiday anyway. He will try to get her on the schedule for 12:30 on Nov 30th, but if he had to he may do it Mon or Tues that week.
We were surprised to say the least especially since we were just asked two hours before to come earlier. Mark was shocked, but for me it was a validation to my questions of the counts the day before. The surgeon had said that he would rather see the numbers higher than normal and no one was putting up red flags about her counts being lower than normal or barely in the normal range. We wondered what God had in store for us! We have many mixed feelings. We have almost two weeks together as a family at home!!!! We also have two weeks that Karrie or one of us could get sick. We have the surgeon saying that Karrie will need 3 to 4 weeks to fully recover before round six which would hit close to Christmas. And then her oncologist says 3 to 5 days and possibly up to 7 to 10 days to recover, depends on the child. Which would put round 6 about December 12th or before and a likely fever and hospital stay over Christmas. So this postponement cannot be helped, but it does mess up the schedule for being home for Christmas possibly. And I was trying so hard to avoid doing the transplant in Cleveland over Christmas. We also have new concerns for her kidney after talking to Gage's mom about how hard the high dose chemo before transplant is on the kidneys. Gage had a five hour surgery to remove the tumor because they were trying to save his kidney and did, but now his kidneys only work at 50%.
I did call Karrie's oncologist and she said that the surgery was the surgeons call and that the postponement wouldn't hurt her any. She said it would give her time to beef up some and maybe recover quicker after surgery. I think they are use to the kids' counts not being that great because that is the nature of the beast. The surgeon also told us that likely what is left is scar tissue and a mature tumor which is not an active tumor. He also explained that the microscopic cells left after surgery would likely be benign at this point in treatment.
So we are glad to be home tonight in our own beds and very happy to watch Karrie play and laugh rather than watching her in a hospital bed feeling yuk. We can wait for that! We hope to enjoy our two weeks at home. Hopefully, we can do some fun things out and about as well! Please pray for much good health and wellness in this house. We've never had her feeling good for more than 10 days, so this should be a real treat! Steven does have a cough and stuffy nose, so we hope it does not get into Karrie! Or get worse for Steven! We are grateful for all the prayers that have been said in preparation for this day and even throughout the day whether you knew the news or not. We look forward to sharing her with you during this "UP" time! God is still working His miracle in Karrie!!!!! I've been told by several that God had a different plan then what was planned for surgery today. Now we just need to keep our eyes open and watch His plan, which is best, unfold and amaze us again. God is still in control!!!!
Please continue to pray for Taylor who is doing good, but had a positive blood culture in her other line. If you remember, the last time she had that in both lines they had to remove her central line and put in a new one. There has been no more fever so the Dr thinks they have it under control and Tricia hopes to go home Monday. Taylor's benefit is this Saturday. I hope to get more info on it and I will pass it along when I do. Taylor and Tricia were up late last night and made two beautiful pictures with crafty things for Karrie! She loved them!
Thank you for all you do for us and everyone take care this weekend! Enjoy every moment with your loved ones. Each moment is precious and cannot be relived if we miss it! Give God the glory for the great things He has done! We praise Him even on our roller coaster ride! Thank you for coming along for the ride!
11-16-05 Wednesday (late) Was the night before Karrie's surgery, and all through the house not a creature was stirring except Mommy and her mouse.
The bags are all packed and sitting over there, and we are hoping for success in Karrie's surgical care....
Ok, that's my attempt at fun and good humor at this late hour. I guess, I am feeling your prayers already and being a little peaceful and able to laugh even at myself. Last night at this hour, it wasn't a cheerful moment. It's a struggle preparing mentally to leave your child in the hands of mostly strangers. And then to allow them to take her to another room and do surgery on her without being able to keep an eye on her! I have been beside her for everything since her last surgery in July and I'm not used to not being allowed to be right there with her. So after many tears (and they still flow now and again) and talking with Mark, I grabbed hold of a vision that Jesus will be taking Karrie from me and taking care of her during surgery. Now if that doesn't give me peace, nothing ever will!!!! God wants only the best for His children. We trust that He will give Karrie only the best during surgery also. We cannot see the big picture yet, but we are looking forward to seeing what God has in store for us tomorrow. We will praise Him no matter what!
A quick overview of our week and the wonderful people cheering us on starts with church on Sunday. Mommy stayed with Karrie in her class, but she seemed a little different. She played more, but still wouldn't talk to others. Little Hannah was so adorable telling "the story." (Thank you teacher Laura for letting her shine!) Karrie helped pass out the crayons and before snack told me I could leave and go up with Daddy. (Big step for little princess!) Well, by the time she washed up for snack, she wanted to go with Mommy up to see Daddy. We are so thankful for our OCC family and all the prayers and support there! We love you!
That evening we enjoyed the Richard Thanksgiving at Dave and Cindy's! Fabulous food and a relaxing time of sharing and fun!!!! Karrie had fun with her cousins and even enjoyed some mashed potatoes and ice cream, too. Steven and Jarret were inseparable! They are more and more like brothers. Thank you family for celebrating when Karrie was at her best!!! We love you!
Monday was a morning at the clinic with many of our cancer friends: Taylor, Gage, Derek, Haley and their families. Taylor held baby Gracie, Gage's 2 month old sister, and I thoroughly enjoyed playing a little with Grant, Gage's 1-2 year old brother. We are all in a battle for our children's lives and it is such a blessing to come together and share and support each other. Thank you Tricia, Becky, and Sherry for sharing this journey with us and sharing your beautiful children, too! As for Karrie, her weight was down a tiny bit (31 lbs), white count 24,000 (elevated from the growth shots all weekend), hemoglobin 11.5, and platelets 78. We watched a Barney video and sang the "I Love YOU!" song. She kissed my nose and then my cheek. She is back to sweet and talkative Karrie! Glad for no more shots, although Karrie had to have her second flu shot which she endured so well! She sang "Old MacDonald" to her baby on the way home. A positive for Steven that afternoon - a successful trip to the dentist!!!!!! Yeah! It was rough at the start, but he made it and was ok!
Tuesday included visits to see friends at work - Prentke Romich and Smith Dairy. Karrie was so excited to go see Daddy at his office! Her smile couldn't be any bigger walking up to his office door and neither could his when he saw her. So good to talk to my co-workers and friends:-) Wow! The support and encouragement was such a boost! So many well wishes for Karrie's surgery and prayers are going up almost every minute! Karrie was in a hurry to get back to Daddy and when we couldn't find him back in his office, we had to go on a search which included detouring through every department to visit. Karrie said, "Come on, Mommy!!!!" more than I can count. That afternoon we also visited friends at Smith Dairy. We enjoyed seeing some we haven't seen for years (love you Sylvia) and those who have faithfully kept in touch! And again the well wishes and support was tremendous! The kids liked the chocolate Teddy Grahams (thanks Michele) and the stairs because they led down to the door to "go to Buehlers" Karrie again wasn't sticking around in one place and was very focused on leaving and going to Buehlers. She did manage to tell everyone that "God and Jesus" will get that bad guy out of her belly, when Mommy asked her who was going to do it. She then continued with, "Mommy, you forgot!" How precious! Thank you friends for the prayers and encouragement!!!!
Wednesday we headed back to the clinic to check counts again. We had planned for her to meet with the child life person, Brenda, for a study that included just playtime. We brought Karrie's dolls and diaper bag to the clinic. And when Brenda came to see if she wanted to go play, Karrie didn't miss a beat. She walked up the hall with Brenda without looking back. She colored a paper for Mommy and Daddy and came back proudly to give them to me. But she wasn't done with her play time with Brenda and turned right around and went back up the hall to the room they were in. Brenda commented on how neat she is and how she puts everything away when she is done with it. A little organizational skills inherited from your Mommy?? Brenda also said she was a little chatter box. Oh to be a mouse in that room! Karrie's counts were down from Monday, but not too low: whites 5.9, hgb 10.5, and plt 78 again. She will likely need transfusions after the surgery. Please donate blood and blood products if you can! Karrie's special thing when she is feeling well and her counts are good is to go out to eat and she had been asking for a couple days. So we treated her to Wendy's. When we arrived, she was so cute saying, "Mommy, look there is Wendy!" We came home for her first nap in 3 days - energizer bunny was back. And later a visit from Grandma & Grandpa Dodez!! Tonight for her prayers she asked Jesus to help her get better and be back home with her family. Steven prayed a similar prayer just before her!
We have the green light for surgery! We are to be at the hospital at 11 am today and the surgery is still scheduled for 1pm. Karrie will be in surgery for approximately 2 hours and then admitted to the oncology floor after recovery. Thank you everyone who is praying!!!!! We ask that God protect Karrie during the surgery and return her to us afterwards. We also ask that God would allow the kidney, as well as the IVC, to be freed from the tumor. We ask God to give the surgeon a steady hand and good eyesight to remove the tumor and any other cancerous lymph nodes. We ask God for peace, comfort, and joy while waiting for the surgery to be completed. We also ask for travel mercies especially if winter decides to stop for a visit!
We also want to continue to remember our cancer journey friends. Taylor was admitted after clinic on Monday with another fever and another positive blood culture in her central line. So far no more fever, but it is another battle waged in this war. Please pray for Taylor to have no fevers or infection and be able to get home in the next day or two. Taylor's benefit is Saturday and it would be such a blessing for her supporters and family to have her doing well for it! Pray for Tricia and Jarrod and family to be strong and have peace and joy in the midst of this struggle. We also heard of an NB patient that we did not know very well, who passed away a couple weeks ago. Not sure what happened, but the family surely needs our prayers. Not sure how Jonah is doing, but with his determination, I bet he's doing well. He told us that he would be 5 on the 29th and he was going to Fun and Stuff for his birthday. So pray that he stays well to be able to do that and enjoy his special day!
Well, I hope to update again tomorrow night after sugery and maybe even call people in all our "families" to update you on the praises we are anticipating. Thank you again for everything you do for Karrie and us!!! We look forward to visits and e-mails and calls! Until then, Pray without ceasing and may God bless your efforts!!!!!!!!!
"Be joyful in hope, patient in affliction, faithful in prayer." Romans 12:12
11-13-05 Sunday I cannot believe we've been home several days, and yet we have only four days left until surgery. Another bitter sweet thing! Before looking ahead, I'll go back to Tuesday when I left for the flu shots. I called it a poke, but Steven knew better. Either way, they are no fun in Steven's eyes. Poor guy! He was NOT the happy camper at all. And now I know why I made Mark take him for his kindergarten shots. I couldn't have watched those eyes cry out in pain a second time. We did manage to salvage the evening with a trip to Wendy's, Wal-mart, and Mark & I both putting Steven to bed was very special. As for Karrie and Aunt Cindy, they had quite a blast! Mark drove me back and we were greeted with cards colored by Karrie for each of us that said "I Love You!" They enjoyed singing, coloring, the cold playroom, and some laps around the floor. When Karrie's IV machine beeped, Aunt Cindy asked what she should do and Karrie said, "Call the doctor!" When Karrie didn't want her supper tray and chose her snack bag, she wouldn't let Aunt Cindy eat from her supper tray either, but said she could have something out of her snack bag. Physically, she ran a little bit of fever but it came back down again. Then for bedtime we started her feed again and she threw up after an hour, but did ok with it the rest of the night with a reduced rate. She had been sleeping alone in the bed and I have slept on the couch, but at 4 or 5 am when the T-storm came through Karrie cried out, "Mommy, I don't want to sleep in the bed by myself anymore." So I joined her and we slept better.
On Wednesday, Karrie slept in. She had white blood cell count of 300, but none of the ANC that is important for cell growth. So no going home yet. After waking her while doing meds and then trying to change her clothes, she went into an all out kicking fit - a three year old tantrum. I guess she didn't want to get dressed yet. Karrie went from breakfast tray to lunch tray, picking at this or that. We had a fun visitor, Amy S from PRC, and Karrie warmed up to her after a bit. The woodkins doll was a favorite with everyone who came in the room that hour. Maggie and her owner Kathy from the doggie brigade also came to visit. After a tractor ride which made her tired quick and then some more crafty activities, Karrie took a nap. Lots of giggles that night with Daddy. We almost got out of doing the shot again because pharmacy sent an IV Neupagen, but Mommy refused it because the doctors have finally got her brainwashed about the effectiveness of the shot. Karrie's weight was down a pound 31.2 pounds. Mostly uneventful night and I actually slept 4 hours straight - in a hospital! Never before, hopefully it will happen again though!
Good news came on Thursday morning with her white blood count at 600 and her ANC finally at 300, we were released to go home!!!!! We had special visitors, Tricia and Taylor, about 10 am. It was a grand surprise and blessing when Taylor wanted to sit on the bed with Karrie and color. This is a first for these two. Taylor had the throwing up in the week prior, but had been doing ok and her counts had not dropped much yet. Tricia and I enjoyed talking and watching our princesses color. Our next visitors were also a surprise - Grandma & Grandpa Richard. Dr Hord was also in to give us the good news and he always gives three stickers. Well, Karrie tried for more. We had talked before and she wanted four stickers (Daddy, Steven, Mommy, and Karrie). Well, when he only gave her three, she said, "Mommy, we need one for everyone else." But Dr Hord stuck to his guns - only three, no more and no less. I think Karrie was bummed, but she let it go. As usual when she is feeling well, she was up and about once she was freed from the IV. And when Daddy arrived, she stuck to him like glue. Precious! Home about 4pm and she immediately found the talking Barney someone sent her! Oh how precious - she loved him!!!! Nap time and then up in time to surprise Steven when he returned home with Grandma Dodez. She had been so excited waiting for him and anticipating giving him the James and Mavis sticker she'd gotten from Dr Hord.
Friday was a good, but a slow day for Karrie. She seemed to want to and even try to play like before, but would quickly find herself stopping and wanting to be held. Not much stamina yet. Her nose continues to run mostly clear, but an occasional not so clear. Hopefully, not an infection. We amazingly went a whole morning without any videos! Kind of nice for Mommy!!! A short walk outside and then in for nap. Karrie is back to painting again thanks to a paint set gift! She will have some masterpieces displayed on our refrigerator.
Today was a better day! Steven and her played mostly good today, but then again the fighting is part of normal sibling life. After lunch we took off for the the rails to trails east of Dalton, despite Steven's scared-to-death whining. We'd all loved our bike rentals on vacation in May, but after two rides on the tag-a-long on the road, he became very fearful of riding it again. Well, we basically had to make him get on and then within a minute he was loving it. You would not believe the change in the kid from one moment to the next! Karrie took a little longer to change her tune. She started out with "Mommy, I'm so glad we got these bikes! It's such a beautiful day!" to "I'm so tired!" (and she wasn't even pedaling!) Thank you Print One Digital. Our family bike ride was absolutely awesome today! And Mark and I will both be feeling it tomorrow!!!!! (Burn baby, burn!) After a nap and supper finished off with a chocolate ice cream cone, Karrie and Steven were dancing around and playing and laughing! How wonderful! We've missed seeing that!
So now looking forward! The surgery will be Thursday at 1 pm IF her counts are good enough and she is ok physically to endure it. We will go Monday for counts and maybe a second time before surgery. Karrie has done well with the night feeds and is still enduring a nightly shot, which we hope will end tomorrow night. Please pray! Specific prayers? I'll be honest, I am exhausted and very tired, so I apologize for not being inspiring or upbeat tonight. God is still good and we are trusting Him. And He knows exactly what we need without us saying it. The Holy Spirit speaks to the Father on our behalf when we do not have the words to pray. The next two months will be long and busy with the surgery, a five to seven day stay, round six starting some time the week of 11/28, possible hospitalization for a fever in December, 1 to 2 weeks of tests at Cleveland to prepare for a January 3rd admittance for the high dose chemo and transplant which will keep us there in isolation for 4 to 8 weeks. It is all snowballing! We look at how far we have come with God's help and each of you, but the biggest stuff is knocking at our door! Overwhelmed! Fearful! Tired! Please pray for strength, peace, and joy for all of us. Please pray for Karrie to be healthy enough to endure the surgery and everything that follows! Please pray for God to give the surgeon a steady hand and to enable him to remove all the tumor and cancer that is left and to be able to leave the kidney intact. Please pray for the holidays and all that we have to do to prepare for the next thing in the treatment plan. Please pray for our family time when we get it and for Karrie to be well for the month of December!
Also please consider giving blood products. I received an e-mail from an American Red Cross manager that is concerned about the cold and flu season and holidays because the giving probably goes down. This concerned me, when I look back over this last 10 days and see that Karrie received platelets three time in 6 days and hemoglobin once. They said the body eats the platelets like candy when your sick. So if you can, please give blood and/or blood products. See the how you can help section on the web site for more info.
Thank you for the prayers, encouragement, meals, gifts, love, help, friendships, and keeping others informed so they can pray. We appreciate and love each of you from the very depths of our hearts! May God's light shine bright on you when your road seems dark and your struggles are great! God will not give you more than you can handle WITH HIS HELP!
"All things work for the good of those who love Him and are called according to His purpose." Romans 8:28
11-8-05 Tuesday I forgot to have you all pray for no more fever. 2am Monday Karrie had 101.8. Bummer! That meant another blood draw and cultures and tack on another day or so for us to be here. Oh well. Better she got it early in our stay instead of the day we plan to go home. Karrie was normal by 10am and busy spreading peanut butter on her toast. She interacted only a little with with Dr Hord and Aunt Holly. By noon she had temp 100.4, but I don't believe they count this as a fever yet, and no new cultures were done. Lunch included soup broth, noodles, and soggy crackers, plus distilled water. Sounds like a diet I should try in order to lose some weight. Karrie was more talkative and interactive with the fever and after. She did the actions and yelled out "Blast off" while watching the Little Einsteins. We had fun talking and giggling, too. What precious moments with my little girl:-) However, with that sweetness came the inability to sleep for nap. She was at least quiet for a couple hours except for whispering to her bear and dog. Cute! Ok, it wasn't that cute because Mommy was really trying to sleep. Oh well. I suppose with all the sleep she has had, the day comes that she just cannot sleep. About 5pm we ended nap and headed out for a walk. That was the first walking she had done for over a week other than to the bathroom on her tip toes. She took a slow but good ride on the tractor and that was when Daddy, Grandma and Grandpa Richard found us. It was spaghetti and Daddy for the first hour or so and then time playing with Grandpa on the couch. Mark and I took a much needed walk off the Hemoc floor. Our night nurse was new, a floater. Oh no, I thought. But I came right out and asked her, "So do you turn on lights, leave the door open, or what?" She uses the flashlight!!! Love her! Our little energizer bunny (aka Karrie) was down in bed by 9pm but still going strong. It was so wonderful to hear her prayers, which she had not done for a week or so. She finally shut down about 10pm.
Our early morning today was a bit stressful. Ok, only stressful on Mommy. The antibiotic was an issue and it's redness and itching side effects. Her antibiotic amount was increased, but nothing was done to protect her from the side effects. Well, nothing until Mommy had a talk with our nurse and got some action. She had a bad reaction a month ago from this med and I wanted to avoid that especially at 5am. And we were also going through diapers which made me think she is not dehydrated as much and they need to slow down the IV fluids more. Not much sleep or many very short batches of a snooze or two for me. I've realized that I have to question everything to know exactly what is going on. I'm also learning that I have to be more assertive when I don't agree with something!!!! Karrie slept in this morning and then woke wanting Daddy. Her nose is running a clear mucous again - kind of a normal thing with the tube in there. We ate, watched many Barney videos, and did a puzzle. Dr Hord said if her counts come up and no fever or culture growth we can go home. And this morning the white counts were still zero and her platelets were down to ten, which meant another transfusion. (Thank you again to the donator.) Also had some surprise visitors, Charlotte and Ruth. How nice!! Karrie was cranky some, but cracked some smiles playing peak-a-boo.
Dr McCollum, the surgeon also came to visit this morning. This is what we know about surgery. It is penciled in for next Thursday and he would like her counts to be plus rather than just ok. The tumor is attached to the IVC (main artery) and grows from the adrenal glands which is above the kidney. It is attached to the kidney and it's vessels. He is looking to remove the gross tumor, meaning some microscopic residual amounts will remain. He will leave some on the IVC and on the kidney unless he has to remove the kidney which is a 10 to 15% chance. The surgery will take about 2 hours and she could need a blood transfusion during it. He will make a bigger incision from the one they did for the biopsy. He explained that the tumor was a big mass and that with the shrinking it has done, there will be a lot of scar tissue. So in a sense, there may be very little tumor left, but the scar tissue would still need to be removed. Karrie should recover in anywhere form 3 to 5 days or so and the report on the tissue will come after 5 days. No other tests will be done to locate the tumor and no dyes or meds are needed to show him where to find the tumor. Some lymph nodes may be resected with the tumor and others may be taken once the tumor is out of the way.
So I've got Karrie down to sleep for nap and Aunt Cindy is here to stay with her for the evening while Mark, Steven, and I go get our flu shots. That should be a real treat - more so for Karrie and Cindy, than the rest of us. But it will be good to get out of here for a little while and back home, too. We hope to go home by Thursday if not before, but we will keep you posted. Please pray for no more fever and that those little white guys start coming back!!!! Thank you and gotta run!
11-6-05 Sunday Once again we have moved into the Children's hotel and we have a wonderful window view of tall buildings and parking garages. Well at least we got a little sunshine this morning! We just cannot seem to stay away from this place! I'm trying to be humorous, because really what else is there at this point. This is our second home until our baby becomes our finished miracle!!!!!!
We tried to give Karrie a can of her feed Thursday night, but ended up getting up every 2 hours with diahrea. And then she threw up the mucous from all the crying. She had gone 48 hours without throwing up. We did the clinic on Friday which was rough en route with Karrie having tummy cramps and diahrea. She crashed once we got a room and slept most of the day except an hour or so while watching a Barney video. Her stool culture was ok from Wednesday so they gave her some Imodium to help stop the diahrea. Her platelets were 40 but only up from 31 and the transfusion on Wed. Her hemoglobin was 11.3 which is good. And of course she is at less than 100 on the white counts. Her temp was 99.5 and weight only down a slight bit more. Her heart rate was high indicating dehydration which set her up to receive 500 cc of IV fluids and over half of it like a pedialyte drink. The nurses commented how amazed they are that she is so good and so helpful even when she feels so sick. That is because of all the prayers, I'm sure! By the time we were released to go home she seemed very warm. Temp was 101.1. Oh No! That's the temp that we have to call if at home to probably be admitted. She had been bundled up sleeping several hours, so the nurse wanted to wait a while and take the temp again. Ten minutes later is was only 99.6. Whew!!! So we headed home, but only to have another 101 about 7:30pm, then within an hour it was 100, and then 99 by bedtime. Karrie had a headache, but no more diahrea or cramping! After some rest she was talkative again and wanted to open some gifts and watch a Dora video.
Karrie's fever climbed a little bit during the night to 100 and Mommy slept with her after 5am. She watched videos all morning and had no diahrea or vomiting for almost 24 hours. We started her feed as directed by the doctor and within 45 minutes she had diahrea, but no pain. She got Imodium again and was fine the rest of the day, but slept and slept. Checked her temp all morning every hour or so and she had 100.89 and 100.98, etc. But at 2:45 she had 101.89 or 101.98 and by 3:30 it was 102.29 and then 4pm it was 102.49. Mark and Steven were enjoying a birthday party at the bowling alley. So I did the marathon packing while Karrie slept and called our doctor for a direct admit from ER. And here we are! They did the usual antibiotics, counts, vitals, nurse, resident, senior resident, etc. Her temp was 102 on their thermometer here, but it did come down. She needed a platelet transfusion - only 12. I need to thank all those people who have ever given any blood products. I have taken it for granted, I guess. Kind of like another medicine that she needs, she gets. Well, it is life that she gets each time!!! I am so grateful for those who give blood:-) Please consider doing so if you have not! Unfortunately, I've always come close to passing out when I've tried to give blood over the years. So I can only say "Do as I say, not as I do!" That evening Karrie did talk a bit and even did her eye rolled up look that we just love!!!! She's still in there!!!!! We were glad to have Daddy stay with us and Steven was happy to be at Grandma and Grandpa Richard's for the night. Karrie's shot bled a lot and she got her platelet transfusion during the night. And we were blessed with the wonderful "lights on" nurse. However, it didn't last long, because Karrie screamed and cried, "It's too bright!!!!"
Sunday morning temps were good, we were up kind of early, and she ate quite a bit for breakfast, which was the most she's eaten at one meal in over a week. However, the diahrea started again, but no cramping. She really enjoyed her Daddy today and he likewise!! We got back to some normal activities in bed: music, painting, books, etc. She did need hemoglobin because it was down to 7 and she also needed potassium. Thankfully, they did it during the day and didn't have to wait until tonight. She woke from a two hour nap with diahrea and back pain. It was up and down from then on with a somewhat normal girl to a really upset one with the diahrea that kept coming. Mommy is on her own tonight with the princess and we had a really nice time doing puzzles, talking, and of course watching
Barney. Her weight has come up to 14.1 kg or 31 lbs. And PRAISE THE LORD, we have nurse Bonnie tonight! She is quite wonderful!!!!!!!! I was set for a quiet night and much rest until blood work results showed that Karrie needed a higher dose of the antibiotic and she needs more potassium. And with the antibiotic she could have the redman syndrome - itching - and with the potassium she will be on a monitor all night. They beep a lot and don't let much sleep happen. Oh well, she needs it to get better!!!!!! I'll sacrifice my sleep any day for her life!!!!!!!
Talked to Tricia and Taylor again on Friday. Taylor was doing really good - looking so much better. Yet she was also starting the side effects of her round 3 - vomiting. They did get out of here on Saturday and we can only pray that they are doing well! We talked to Vanessa today and she said they've been here four weeks and Jonah is doing ok - eating more, etc. We also noticed this week that Megan, who is a 12 year old from Wayne County, is out of PICU, post transplant, and doing better. Also talked to Haley's mom in the clinic and Haley will be an outpatient for her treatment. She is fighting diahrea also and in need of platelets. Please give if you can. See the web site for details on how. There are lives that depend on you! Also keep praying for these wonderful children and their families. God has a plan for all of us and He will see us through!!!
As for Karrie, we feel your prayers and as I've said a million times - WE ARE SO GRATEFUL that you are willing to lift our trial, her life, and our concerns before our Heavenly Father. We believe with all our hearts, that we would not make it without each of you helping us. Mark and I had a rough time driving up her on Saturday - a little bit of anger directed toward God. But you know, He already knows we are struggling and hurting. And He wants us to talk to Him, even if we are angry. He knows the Big picture and He will reveal it to us when our hearts are ready to receive it. We must continue to trust Him until that time! He only wants the best for us. God is writing this, not me!
Please pray for Karrie to regain strength and weight, for the diahrea to stop, for her to eat more, for a good night's rest, for the meds to not make her sick in other ways, and for her organs to be protected from harm. Please pray for Steven as he has truly been a very good boy lately, but there sure must be a lot going on in his head with all this happening to his little sister! Please pray for Mark as he runs things from the home front and tries to work, come up here, and take care of Steven. Please pray for me to get some good rest and be all I need to be for Karrie!!! Also pray for our families who are once again helping out with Steven and the home front. Thank you for the encouraging e-mails and for so many dear friends that share our love for Jesus. We are so thankful God put us here on this earth while you also are here!!!! We love you!
11-3-05 Thursday We are so grateful for all the prayers being lifted for Karrie as she battles the side effects from this last round of chemo. This one has been the toughest one with the constant diahrea and some vomiting, plus now the fever. We had a good night's rest Monday night. The fever started Tuesday morning, but miraculously the 101F continued to go down the rest of the day. Thank you to all of those prayer warriors!!!! So we never made any trips to the hospital that day. However, it got rather low - 96 and 97's. Karrie was responsive and actually somewhat mean at times. She is a fighter! She tried to play and be up, but she didn't last long. She did laugh about her band-aid once. That was good to hear!
On Wednesday we had a clinic appt and it was the start to some rough days. More of the same and she's lost 3 to 4 pounds. She got IV fluids to rehydrate and with her platelet count at 31 and blood in her stool once, she also got a platelet transfusion. Her infection fighting cells are nonexistent. She watched Barney and Pooh and took a nap after three hours. She also had an echo cardio gram done which was needed prior to her surgery. A stool sample was taken to rule out any bacterial infection before any med can be prescribed for the diahrea. Karrie cries with horrible stomach cramps when she has the diahrea. She is weak and tired. Still no temp on Wednesday and she tried to eat a little. Aunt Laurie, who had been a helping hand since Saturday, headed back to Columbus. Thank you, Laurie, for all your help! We love you!
Thursday was much the same except the fever came back. With a blow out at 3am and the temp, Mommy slept with Karrie the rest of the night. More comfortable than the hospital bed, but too much anxiety to sleep very well. Mommy was on her own for the first day since home from the hospital Friday. Again Karrie had much of the same, but no more vomiting!! (That's a small praise!) Karrie's temp never reached 101, but it teetered close and also went down to normal. (Another roller coaster ride!) Karrie did have several moments today that when she talked, her old self came shining through. She is still in there!!!! Praise God!!! She even threw a screaming kicking fit when something wasn't how she wanted it. Two naps were not enough today though as she crashed at 7:30 on the couch. We are letting her rest since we have to wake her for her least favorite things - dressing cover change, face tape change, and shot. I am actually updating before 10pm:-) Well, ok - now it's not that early anymore. We did the above and got her to bed before I could finish this.
Tomorrow we go back to the clinic for counts. Her hemoglobin was high yesterday - falsely elevated from the dehydration or she had enough still from the transfusion last Thursday morning. However, they expect it to be down, so we may have another long day at the clinic. Karrie perked up this afternoon when I told her Grandpa "Teaser" was going with us tomorrow. That was good to see!
We are extremely thankful we have been able to weather most of this storm on the home front instead of at the hospital. It has not been easy! This is by far the worst Karrie has been since July when this all started. But we believe with God's help she will come out of this as well and we will have to once again keep up with her! It is just so hard to see this little one battle something she doesn't understand. I have struggled often with "Where has my little girl gone?" and "I just want our little girl back!" when I look at pictures of before and now. But God has revealed to me that this is our little girl - she is still in there! No matter how much or little hair, how sick or well, how weak or strong, she is still our baby girl and we are going to get back to better days in God's perfect time!
Please continue to pray because we need God working every minute in Karrie's body! We ask for an end to the diahrea and fever, for Karrie to begin eating again, for her smiles and personality to shine through, and for the tumor to be taken away completely. We do not have any date yet for the surgery, but please keep the surgeon and the kidney problem lifted up in prayer also. May there be no tumor to remove because God beat the surgeon to it! Ask according to His will and He will give you the desires of your heart - not sure of the scripture on that one, but it is in there. If it be His will, Karrie will be a miracle and a living testimony to the power of prayer.
Each week we are overwhelmed by the generosity and kindness of wonderful people!!!!!!!!!! We are humbled because we do not deserve what we receive, but then again Karrie does not deserve this illness. God is still in the business of miracles and He does them every day. May you see the miracles in front of you today! It may be God's way of reminding you that He loves you and wants only the best for you! Thank you for the encouragement and prayer support! We love you!
10-31-05 Monday Hello! Come join us on our roller coaster ride of life! Oops! Did I just take that from a 4 Him song? Well, it does define where we have been, where we are, and where we are going. Karrie has had some very rough times and then she has bounced back and amazed us, too, with her wisdom and strength. Thank you for your prayers. We need them greatly!
Karrie slept well Thursday night except for talking in her sleep a few times. However, the nausea meds did not go so well Friday morning. The one is given to enhance the other and many kids have problems with vomiting immediately or (pardon for the following) they have an itchy bottom. Well, I remember from Round 3 that Karrie did fine the first couple days and slowly got worse in strength, tiredness, and taking meds. So this Round 5 being the same meds followed mostly the same path. She vomited twice when given the Decadron sp? She cried for Daddy a lot, but when I asked her if she would let Daddy help her if he was there, she said no. It's a roller coaster! We were released to go home Friday afternoon and Karrie really perked up when our nurse came in to unhook her from the IV. She talked and talked about being unhooked and going home. Grandma & Grandpa Richard arrived and Karrie walked Grandpa out to open the floor doors for him to take carts of our stuff to the van. She left the room with such energy and returned with none. Another roller coaster! She napped while we waited for meds and such. And once we got home she slept some more. The night was mostly uneventful other than giving her a different nausea med than what she had in the hospital.
Saturday was strangely quiet. Karrie was not talking. I love to hear her talk, so the day was long without her words. We did have small miracles of a BM, eating a little at lunch and supper, good nap, few words, and she was very tough for her shot. We made it all day without vomiting, but bedtime was the time for it. We were up at 1 am to give the nausea med and start her feed. Sunday came and so did the time change - an extra hour of sleep!!!! That is heavenly after 5 days in a hospital. Our Karrie with energy and words also arrived on Sunday. Roller coaster - UP:) She stayed home with Aunt Laurie and Daddy while Mommy and Steven went to church. Karrie even "helped" Daddy rearrange the living room while we were gone. She had bites of food and drank well also. Then after lunch she went outside with Daddy and Grandpa Richard and "helped" do stuff around the barn. Then she stayed awake for nap and played board games with Aunt Laurie, Mommy, and Steven. And to top off an already good day, Karrie never made a peep when given her shot. Wow! What a trooper!!!!
Monday was the next roller coaster ride - going down more often then up! Up in the early hours and not able to sleep, Karrie vomited and then Mommy crawled in bed with her to help her sleep. She spent precious time with Aunt Laurie watching videos. Unfortunately, the diahrea started and that really drained Karrie. She took a morning nap and an afternoon one, which she has not done since she was probably one or two years old. We were glad to see her drink quite well the first part of the day since she was losing so much out both ends - which brings me to the afternoon vomiting. The first time she continued to gag and Mommy was home alone with her. Well, as I glanced in her mouth I got a shock. Her nose tube, which was taped to the top of her nose so it would not come out when she began vomiting per Dr's suggestion, was looped in her mouth from her throat. I almost lost it - what do I do? See, we are very thankful for the NG tube which helped her put back on those 6 pounds she had lost in July. However, once we got to Akron from Cleveland, who put it in and said change it once a month, Children's said there was no need to change it since it wasn't the usual NG tube, but was a type they usually left in for several months. And why cause the child undue stress and discomfort taking it out and putting in another one? So basically, we have never had to redo the tube and I wasn't too sure what I was messing with. Well, it all worked out ok when I loosened the tape and pulled it out her nose and then back in. Karrie was pretty whipped all evening and we knew we were in for some rough hours and maybe days. Karrie did manage to get up off the couch and ask Mommy which baby doll she wanted and then took care of the boy doll for a little bit before crashing again. She went to bed easily and talking! Not sure what the night will hold?!?!
We are glad we can help you each feel like you are here with us by the details in this update. I am also sorry when I get too long winded. Oh well, I can use the excuse that I have been on a roller coaster and I don't know when it will stop and let us off. I wonder if someday Karrie will like roller coasters or not - Mommy does, Daddy doesn't, and Steven will probably never try one.
Speaking of Steven, he is doing good in school, loves riding his jeep here at home, and playing several board games. He did manage to dawdle a little too long Friday morning and miss the bus. Mark said the look on his face was real good. Daddy did take him to school, but not before a little lesson was learned. We do ask for prayers for Steven and his bashfulness and not willing to try new things or old things for that matter. Sunday mornings are quite the trial with getting him into his class and encouraging him not to sit in the corner the whole time. We talk to him about what is bothering him, but not sure what's really the problem. Thankfully, this Sunday he did join in with the other kids and did fine! He has also learned that if he doesn't like one adults answer, go to another one. He told me that he really likes to be told Yes. Who doesn't? Please pray for our parenting to be right on target and for Steven to be courageous and adventurous. Ok, should a mom really ask you to pray for that? Hmm??
And as your praying, please ask God to deliver Karrie from the sickness that she is enduring right now. Her counts will (or have already) be dropping and we pray for no fever or another hospital stay. Please pray for her strength to fight and get through the nausea. Please pray for her organs to be protected from the medicines, for the tumor to disappear, for the kidney to be freed, and if there is surgery, for God to work the surgeon's hand to remove all the cancer remaining!!!!!! We trust He knows what is best and we will remain in Him as our strength and peace through the rest of the treatment. Another concern that has come up as we get closer to transplant is the possibility of Rainbow wanting to start the high dose chemo and transplant prior to Christmas which would have us in isolation for the holidays. Pray that our family can be together on Christmas Eve and Christmas day and we can start that last round after Christmas! May it be God's will!
We are once again thankful and greatly encouraged by your prayers and words of encouragement. We do not get on line every day, but when we do, those e-mails help us move one step further in this journey we are on. Thank you! May God reveal a miracle to you today and may He receive the glory for it! He is faithful and will not let you down! We love you!
"The Lord is near to the brokenhearted and saves those who are crushed in spirit." -Psalm 34:18
10-27-05 Thursday We are finishing the last day of chemo for this round. This day finishes 2 hours earlier since the first med is not given. Might be a night for some good sleeping - much needed good sleep!!!
When we left you Wednesday we were heading for a bath which has never been much fun in the hospital. She cries through it all, but afterwards she is refreshed and better feeling. We got done in time for Grandma and Grandpa Richard to arrive. She talked us into 3 tractor laps around the floor before eating her lunch which consisted of tortilla chips, dip, and juice - or was it just Grandma's orange pop?!?! We did more walking after lunch and had a chat with Dr McCollum, the surgeon. He is preparing to operate in 2 to 3 weeks and feels that the tumor is resectable even though it is still wrapped around the renal artery (I think that is right). He also said the only other concern would be Karrie may lose a kidney if the tumor is attached to a vessel or part of it. We will meet in the next 2 weeks to discuss the surgery in more detail. We are thankful that we are able to remain at Children's for the surgery! Later Karrie napped and then Daddy and Greg arrived for supper last night. This is when we began to see the medicine take away our little girl. She would not speak to Daddy or interact with him much at all. Only wanting Mommy and not too active anymore. Karrie did manage to cut some paper and then scribble with a purple wonder color marker and paper for a long time. Very focused on not looking at or talking to anyone. Daddy knows it's coming when the meds get bad, but it still hurts. She does come around to her old self briefly. One such time was after prayers when Karrie and I were resting in bed. She would not let me leave her side and usually I have to wait until she is asleep to get up and get ready for bed. However, after a little while Karrie told me to go get ready for bed and proceeded to help pull me up. How sweet!
Our night was another long one with lights and a noisy nurse. This usually only effects me, but Karrie seemed more restless by early morning, but that could have been from the blood transfusion. The blood did come and her hemoglobin was low, so they did a transfusion at 3:30 this morning. So with the nurse in and out often and turning on the lights each time, you can guess how much sleep we got. Then our morning nurse was in after 8am and woke us to get vitals. On previous days the nurse would let Karrie sleep until 10 or so. After vitals she was restless and not interested in eating or videos. (No, not even Barney.) Eventually, Karrie got back to sleep and woke two hours later when visitors arrived. She had a slight
smirk on her face when Lisa W brought more Barney videos. The rest of the day consisted of eating a little (green beans - go figure?), resting against or on Mommy, taking a short walk and a one lap tractor ride, and another almost 2 hour nap. Waking for vitals again was not a happy moment. The nausea med actually makes her gag or throw up toward the end of this treatment, and today was no different. She lost her green beans. Daddy stayed home tonight to spend time with Steven and build a track (trains and cars?). So Karrie and I just hung out watching tv. As long as I was holding her or beside her she was ok and otherwise she was asleep. No more energizer bunny:( It is really tough to see her so inactive, but she continues to bring me joy when she does speak. Tonight she was telling me about how I don't like giving her shots and she holds Daddy's hand and Elmo for shots and Daddy's thumb for dressing changes. Then she told me that someday she won't need the shots, dressing changes, and tubies and she will be well. Maybe God has let her in on His plan!
We have come to know more new cancer patients next to us. Haley is a 7th grader with a tumor and Mark spoke with her dad the first night they were here and still in shock. Samuel is another patient who is 3 years old and has the Wilhm's tumor which is a little better of a tumor than Neuroblastoma. The tumor is in both of his kidneys and he could lose one. His dad is a minister and I got to talk to his mom about their story and shock. She told me right off that they have been praying for all the kids on the floor. How wonderful! Please lift these new friends in your prayers. May their healing be another miracle to praise God for!
We ask for your prayers for Karrie as this treatment is zapping her energy and joy. We know it will only last a while, but it is so hard to see her down, and not hear her laugh and see her play and go go go. Please pray that the nausea medicine works better and we may avoid all the vomiting that comes with this round. We also ask for your prayers for the upcoming surgery. It is never too early to ask God to intervene and heal by His mighty hand. But if that is not His plan we still ask for Him to spare her kidney. May God allow it to be freed from the tumor so that it does not also have to be removed. Please lift us up in the homecare that we will be giving for the next week while she feels sick and her counts go down. We need God's strength and patience each day.
I really thought I would do a short update, but once again the details got the best of me and I have written another lengthy chapter. Thanks for all your prayers and for keeping in touch. We know we must rely on God, but when he uses people to help us see His face it is just amazing. Like today when I thought no one would be coming to visit, God sent two wonderful people. Thank you Lisa and Scott! God is still in the business of being Amazing!!!! We must trust Him, but when we lose our focus He puts together little miracles right when you need them!!!!
"Let the peace of Christ rule in your hearts.... And be thankful." Colossians 3:15
"Always be prepared to give an answer to everyone who asks you to give the
reason for the hope that you have." 1 Peter 3:15
10-26-05 Wednesday We are over half way through round 5 and not doing too bad, yet. Karrie continues to be very energetic and on the go, but slowly becoming an energizer bunny whose battery is starting to wear down. (She is a lot like her mom - don't stop until you cannot go no more.)
Saturday was a somewhat busy day. Karrie and Steven did a lot of playing throughout the morning and early afternoon, but also did a lot of fighting and arguing. They both are big on tattling. We did take the Great Pumpkin train ride out of Orrville that afternoon. The kids needed to get out of the house. The rain was nasty and cold, but we weathered it ok. The train ride was also ok. Not quite as exciting as we'd hoped it would be. No comparison to the Thomas train we took in May. Although the cost is no comparison either. I guess, you get what you pay for. Steven did say something like, "Cool Dude! Great train ride!" But that was after he commented about the train not going fast enough. Cousin Annie went with us, so that made it more enjoyable. Karrie and Steven love Annie! Karrie looked out the window a lot after Annie gave up her window seat. Steven still wants to know where the lizard is that the guy on the train talked about being over in the swamp. It was supposed to be a spooky train ride so they had spooky music and comments about things in the trees and such. Kind of lame and we didn't want it to be scary anyway. Since our 10 minute ride wasn't the excitement we'd hoped for, we had to make a hot cocoa stop at Dravenstott's. Now that was fun! Good to see some friends and fun to sit up at the counter. Good pumpkin pie, too, JoElla!
Once back at home we decided to start Steven's birthday a little early. We gave him his birthday gift - a jeep - and spent the next two hours assembling it. The kids did really good even knowing they couldn't ride it until it was charged - 18 hours away. They played good in and out of the garage and also handed us pieces and parts as we needed them. Later once we finally got inside for supper, Mark commented that was the best him and I had worked together in 13 years. God has made changes in us already. Aunt Laurie came to play and take photos. Check out the photo album on the web site at some point to see them. Our night's sleep was interrupted by Karrie's feed coming undone and soaking her and her bed. We had clean up time and also had to put on a new dressing over her central line. She was a trooper even though it wasn't fun.
Sunday morning we were blessed by the wonderful sunshine the blazed around us!!! And we got to go to church as a family again! Karrie did well in the 3-4's class despite missing a chair and falling on her bottom. And then on the way to get Steven to go up to church, Karrie fell and hit her forehead on the floor. She recovered quickly and never complained about her bump and bruise. She did say once we got home we should put a band-aid on it. Band-aids make everything better, especially when the are fun ones - thanks to many of you! The afternoon was busy with jeep rides and playing with Aunt Laurie. Karrie helped Aunt Laurie and Mommy decorate for Steven's party, too. Steven's party was great with pizza and gifts and sharing time with our family. We even had a call from Aunt Cyndi and Pizza Man who were in Las Vegas. Uncle Tim is Pizza Man and shares Steven's birth date. We also celebrated Grandpa Richard's 65th birthday!!!
Karrie's easy Monday morning wake up makes us wonder if she likes the hospital. It was a first wake up time without crying and fussing. And we dressed her in an adorable piglet outfit that she just loved. Really need to have a digital camera so we can share those photos with you all. Everything went well in the clinic and counts were good for starting chemo. We received actual pictures of the tumor in July and the tumor now in October. Praise God for the visual difference. And Dr Patton did say that our 80% estimate was probably right. (I believe that would be 90%, Dr Patton. Praise God!) We waited a while for a room and a nurse on the floor. Karrie requested a purple room, but we got a blue one instead (5641). Karrie was on the go and riding the tractor. Every one loved the cute little Piglet! She ate quite well including pizza, fresh vegies and dip, strawberries, and PB&J. Karrie continued laps around the floor even after chemo started around 5pm and did a lot of humming, dancing, and laughing. Wonderful! She didn't miss a beat! She slept very well through the night despite the hourly up to pee or diaper changing. The six hour flush after the chemo ends is brutal when done into the night. I got 8 hours maybe, but only one hour at a time. And what is with the nurse turning on the light during sleeping hours??!?!??
We did find Taylor and family still in 5633. She finally had no fever so they could do surgery on Monday to put a central line back in. Karrie was very attached to her wanting to see her often, especially on Tuesday. Karrie told me Monday night that "We are going to get stronger and Taylor is going to get stronger and the bad thing in our bellies will be gone." I sure look forward to Taylor and Karrie playing together when they are both feeling good and healed!!!! We have a praise for Taylor and family - they got to go home after another 3-4 wk stay. We just pray their week at home will be filled with much joyful family time and just some simple normalcy!
Our Tuesday included much walking and riding the tractor! We even got unhooked to go to lunch with Taylor and Tricia. Karrie had a skip in her step but got a bit crazy being away from Taylor while getting our food in the cafeteria. She was probably either hungry or getting tired. We did get a nap and then woke to visitors - Grandpa and Grandma Richard and Steven! How grand!!! And yes, Karrie and Steven were off to the play room to get the tractor and wagon to do laps with Grandma and Grandpa keeping up. Daddy arrived later for a good supper that another wonderful person made. Thanks Finks! We had a visit from the Doggie Brigade dressed in costumes from Tinkerbell to Darthe Vader (sp?) and a bumblebee to a Hawaiian hula girl. How cute! And the kids got to pass out treat bags to them. Later Karrie wanted only Mommy at times which I believe was because she was either hungry or tired. But the chemo is probably starting to take it's toll on her body, as well. As long as Mommy sat with Karrie, she was ok. We got to bed early last night and slept better (Mommy got 2 & 3 hour bits of sleep at a time, but still wonder what is up with the nurse turning the lights on??!!??)
Karrie slept in this morning again. Chowed down a piece of cheese upon waking. But has been very cranky today. Could be for a number of reasons - chemo, nausea, constipated, tired, or just does not want to take a bath. After two videos while I type this, she said "Mommy, I really want to take a bath." So I must finish quickly before she changes her mind. She is also starting to sing and say "I love you, Mommy!" Karrie is starting to look more pale and we will be getting a transfusion before leaving this week.
Please pray for Karrie to endure the treatment as it gets tougher. No nausea yet, so hopefully we will weather that storm well also! We are talking surgery in 2 to 3 weeks, but maybe God will remove the tumor before then! We will praise Him either way! Got to go - she wants me to read a story before her bath. We love you all! Thank you for your prayers and encouragement. We will rest in our God of grace and strength!!!
10-21-05 Friday Here are some moments in the life of Karrie as she continues to feel good and be a normal three year old:
She is still waking asking for Daddy on some mornings. Karrie has learned how to rewind and fast forward videos to her favorite parts. She doesn't always go the right way, but once she figures it out she does it several times. Certain parts of the Barney videos will be worn out before the rest of it is. On Monday we were feeling creative. She used several pieces of colored paper to draw pictures for several family members. She was so proud! And then Aunt Holly, Steven, Karrie and Mommy made pumpkin (and heart) cut out cookies and frosted them. Added a few sprinkles, too. Naps have not always been a time for sleeping for Karrie this week. Mommy could hear little feet running around upstairs on some days. At bedtime Monday night she told Daddy and Mommy that, "Someday I'm going to be a Mommy!" How precious!
On Tuesday we enjoyed the nice weather playing outside with brother, Grandpa Richard, and cousin Jarret. Karrie may also be a doctor or nurse when she grows up. She puts her stethescope around her neck and uses her syringes in her nurse kit to give shots or medicine. We took cookies to the nurses at the clinic on Wednesday. They were very pleased. Karrie's counts were good and she enjoyed playing Little Bear on the computer there, having lunch with Mommy and Grandma Richard, visiting Taylor, watching the balls, playing outside on the playground (first time for her even in all the time we have been at Children's), and singing songs all the way home to keep from falling asleep. The next days included watching Uncle David and Grandpa Richard play in the dirt to make a base for a storage barn, playing trains, computer, doll babies, and matchbox cars, enduring a hair trimming, and taking pretend pictures with a play camera. (Maybe she'll be a photographer someday.) She is receiving her feed at night and eating somewhat at meals. Seems to want the salty things - ham and pretzels to name a few.
Speaking of meals, we have had some awesome ones over the last several months!!! Thank you again for all of you who have provided for us!!!! We have also been blessed to get to know some of you whom we did not know too well. It was strange making a meal the other night. And yet, a blessing to do something I used to do. Although we didn't get around to eat very early with everything else we do. But then again 7:30 supper time wasn't that uncommon for us before Karrie's illness. It was good to see Taylor and Tricia on Wednesday. Taylor was to be back on the surgery schedule for the end of this week to have a new central line put in again. The CT scan showed a smaller tumor (Praise God!), but there is a spot on her lungs that they need to look into. She has not stopped running a fever since day one and the doctors have ruled out bacterial and viral infections. They will be looking into a fungal infection. Not sure what path this will take them on, but Tricia hoped to get home again before the next round of chemo. Please say a prayer for them. May their next path be less stressful and more joyful. Jonah's mom said that he was doing ok, but we didn't talk long. Pray for him to get through this transplant time and get his counts up.
We have another praise!!! Mark and I finally got to get away today. Wow! We had to go shopping for Steven's birthday gift. We'd originally planned to all go as a family, but the kids put up some resistance to going shopping and Grandma Dodez wanted to see them. So Mommy and Daddy got to go out alone! We hadn't gone out since July! We had a nice lunch thanks to the Ambassadors' class at OCC! (We love you all!) We even took off for Millersburg Wal-mart after Wooster didn't have what we wanted. (What a fun date?!?) Well, our trip was eventful! We got a flat tire. When you think nothing else could happen (our washer leaked water this week, too) - boom, it does! However, God was watching over us once again. We pulled into a tire center right there. As Mark went inside to get help, I shook my head thinking "not another thing" Then I realized I should praise God in this, too! So I did and realized it could be worse. We could have been in an accident or stranded on the road. The auto guys repaired the big hole and off we went to Wal-mart. God really is amazing!
Our prayer request remains the same as listed on the website. More specifically, we ask for prayers that the tumor may be completely gone before the surgery after this round. We believe God can heal her if it is His will. To not have to have surgery would be a tremendous blessing and praise to our awesome God. We will still continue with round 6 in November or December and then the high dose chemo and transplant following that at Rainbow B & C in Cleveland (probably January). We have to complete the protocol to insure nothing will come back. We again thank you for your prayers for us and for your praise to our Heavenly Father for all He has already done! Don't stop!
As our weekend gets under way, we will be celebrating Steven's birthday. Hope he likes his birthday gift - ha! ha! We plan to take a train ride out of Orrville tomorrow afternoon. Then on Sunday we will have a family celebration for Steven and Grandpa Richard who is turning 65 on Monday. Hope we can make this weekend extra special for Steven since we will be gone a lot this next week with chemo running Monday through Friday! Say a prayer for Steven, too. He has shown some emotions and we are encouraging him to talk to us about them.
Good night! God bless each of you! Thank you for blessing us!
10-16-05 Sunday Another weekend has flown by and Karrie is doing very well. However, Steven and Mommy are not fairing quite so well. Steven had a bad cough, but seemed better Friday morning and went to school. Mommy was able to join Steven at school for the kindergarten tea, but he wasn't interested in cookies and punch. Plus, the plans to go out to lunch and birthday shopping didn't sound good to him either. The class headed out to recess, but Steven didn't want to play. Now, there is no doubt he doesn't feel good and sure enough he lost his breakfast. He had a temp and spent the rest of the day watching movies, playing games, and taking a nap. Thankfully, he was normal the rest of the weekend, but still fighting the cough. Mommy has a bad head cold that we hope some extra Vitamin C will knock out. And little Karrie through all of it is doing just fine with only the same clear runny nose she's had for weeks.
Karrie continues to amaze us. She talked Grandma Dodez into a peanut butter, jelly, bologna, and cheese sandwich on Friday. And yes, she did eat quite a bit of it, but not until later for supper. Her latest fashion fad is bracelets she's received from church functions. She makes sure everyone gets one or two for their arms. She was our alarm one night to
remind us to put another can of feed in since we forgot to set the alarm. (It isn't any fun when the feed runs dry, because then the whole line has to be opened and reprimed for it to run again.) She has woke the last three mornings saying, "I want my Daddy!" How precious! Mommy's not too jealous yet! She's eating very little of anything (which is ok with 4 cans of formula a night), but is back to eating cucumbers and more fruit, which she hasn't done for several months. Karrie requested to go out to eat on Saturday for lunch, but instead we went to Macedonia Denny's to meet Aunt Cyndi for supper along with Grandma and Grandpa Richard. What fun! Aunt Cyndi put together a really awesome scrapbook album for Karrie. We also played bubbles at Karrie's request until her pop got knocked over. Sunday morning we headed for church after Karrie had told Mommy several times that she would be fine in her classroom and Mommy could go to church with Daddy. Well, that was the plan until we arrived at the door to her classroom and then she changed her mind. The female gender is allowed to do that and often right! This afternoon we enjoyed a family
board game, and Karrie played for a few minutes before losing interest and going off to do something else. Steven however played the game for the rest of the day. He liked playing everyone else's turn so they lose and he wins. And what would a weekend be without plenty of Barney videos. (Thanks Lisa W.) We watched the same one Karrie and Mommy watched the day she had her ultrasound when we found the tumor in her belly.
We were glad to share the good news with our church family today. We cannot help but see it as bittersweet, since we still have a long road ahead. We still need your prayers for Karrie to be healed and to endure the rest of the treatment. We are only 3-4 months into a 12 to 15 month treatment. Also prayers for Mark, Steven, and Amy for life changes and constant care and concern for what the future holds. We are so grateful and very humbled by the generosity and support given by so many of you. We often cry when we receive your blessings. We cannot do this without you, because we know you are God's hands, feet, face, and arms to us! Thank you for being willing to be used by Him!
We talked to Tricia, Taylor's mom, on Friday evening and surprisingly Taylor was doing very well after surgery to remove her central line. However, they will be in the hospital until at least this Wednesday because Taylor must continue on an antibiotic that is given via her central line, but with the temporary line they won't allow them to administer it from home. Tricia sounded better since she was going to get some home time since Jarrod was coming to stay with Taylor. Please continue praying for little Taylor and her family. We saw the Akron Beacon article and picture of her and cannot believe that is the same girl. We have struggled continuously with how much different Karrie looks, but didn't realize that Taylor had also changed. Bless her beautiful heart!
Well, that's all for now. I'm writing early so I hope to get a good night's rest also to help beat this cold. We love you! Goodnight!
10-13-05 Thursday (late) Sorry for the delay in info on how Karrie is doing, but life goes by so quickly and late nights is all I have for e-mails and sleep. So sometimes one wins out over the other. We are glad to be home again. Oh! Home sweet home! I'll never take this home for granted again. I walked out our own back door into our own backyard and smelled our own country smells of fresh cut grass (thank you Bill E.) yesterday and praised God for being out of the hospital and back home! With the yukky weather it was harder to get out at the hospital, so a pleasant day at home was twice as nice!
Monday morning we had a surprise visit from the sweet tooth lady (Aunt Holly) who brought creamsticks and muffins! Yum! Karrie woke with a twinkle in her eye when she saw her morning visitors including Grandma & Grandpa Richard, too. Karrie took little interest in the yummies, but instead wanted to get going out of her room. She rode the tractor many many times around the floor with Grandpa Richard keeping up the whole time. She did run a fever, but not as high and it was also taken differently than the other times. Mommy was due for a good nap that day, but it took a good hour for Karrie to give in and close her eyes. Our visitors for the evening included Daddy, Aunt Cindy and Uncle David. Now Karrie still isn't too sure about Uncle David, but Aunt Cindy makes up for it! Karrie and her did stickers and crafty things the whole evening. (Thanks Aunt Cindy!) Karrie and Mommy walked them out and took our two lap walk which has become a nightly thing. We were happy to find we had Providence for our night nurse. Karrie loves her!! She doesn't talk a lot to any of the nurses, but there is a special connection between her and Providence and it is obvious in Karrie's responses to her.
Once again on Tuesday, Mommy planned to make a break for home because Steven and her had dentist appointments that afternoon. And we assumed with the fever on Monday, we would be there another 48 hours. Well much to our surprise, the doctor asked if I thought Karrie was well enough to go home. I believed she was! We were waiting on no fever and her counts to come up. Her ANC (absolute neutrophil count which is an indicator of white blood cell growth) was on it's way up and she had no fever. Karrie was freed from her IV to ride the tractor again, keeping Grandma & Grandpa busy while Mommy packed. The moving van and movers (Daddy) arrived and we headed home about 1pm.
Our homecoming was bittersweet. Steven did not want to go to the dentist and became very upset once we got there and it was his turn. Their policy is for the kids to be on their own and do not want our appointments to be together. It was all very frustrating and had I not been at the hospital for the past 5 days, it may have went much smoother. Steven also started with a sore throat, runny nose, and sneezing. So with Karrie's counts barely coming up, we were afraid we'd be back at the hospital in a day. Karrie continued the evening with her energetic, antimated, talkative, cute self and even ate two bowls of soup. We didn't do the feed in hopes for everyone to finally get a full nights sleep!!! Wednesday was much of the same and Karrie really enjoyed playing with all her toys again!
As for today and our appointment with Dr Patton, we were very happy to hear that Karrie's white blood count is up to 22,600!!! No more shots for this round!!!!!!!!!! Karrie has told us several times that she doesn't need a shot tonight! Her other counts are coming up as well. We clarified the test results and didn't really get much more from Dr Patton. It's almost like she is not allowed to be encouraging. When Mark asked percentage and how to come to that number, she only stated that the tumor is still there and it has shrunk considerably. I threw out 60% and she said more like that than the 90% Mark had figured. But if you look at the numbers - the previous 8x12cm was a measurement from the ultrasound and the actual measurements from the first CT scan were 11x14x8cm and now it is 4.8x2.5x6.5cm. We believe if you multiply LxWxH of each and then divide, the smaller measurement is 6% of the original tumor. Which leads us to a 94% reduction in size!!!!! We believe the prayers of many all over the world helped us reach this point and gave us this healing by God's mighty hand. May God be glorified! There is still a tumor maybe the size of a golf ball. The original tumor size when drawn to scale is so huge compared to Karrie, we cannot believe it fit in there and that we didn't know it was there. We are not sure that a grapefruit size was an accurate comparison, more like a cantalope. There are also some lymph nodes on her left side, which were not seen before because of the size of the tumor, that may possibly still contain cancer cells. The report says it could be residual disease or a collection of the tracer (nuclear medicine). It was confirmed that the wrist and knee are clear!!!!!
I find myself being glad for the huge improvement, but knowing the road ahead it is difficult to stay there for very long. Even if it is all gone tomorrow, we still have to finish the protocol in order to be sure that the cancer is removed completely!!!!! It is so hard to put Karrie through the sickness from the meds when she is feeling so good and heading back to our normal little girl. And once again God is very close and knows what I need and when I need it. Back to the book "Just Enough Light for the Step I'm On" by Stormie OMartian - I read a chapter last night and today and God spoke clearly. Stormie writes, "... even in the darkest times, we should not doubt God. Even when it may appear like our life is over and He has forgotten us, He is actually growing us into our future (italics mine). Sometimes what seems like the darkest step we've ever been on comes just before the brightest light we've ever experienced." For me God has become bigger, more powerful,.....OK You cannot tell me that Satan is not still at work. As I was writing this I look over on the floor and there is this HUGE spider crawling and as I shreaked and moved to get something, it moved behind the wall. I went after it with a kleenex and missed. That was a weak attempt. I really hoped Mark would come to my rescue. Ok not at 12:30 at night. However, I did manage to squish it (I'd like to believe) between the wall and a scrapbooking box. Here I am trying to be used by God, only to run into this distraction. To be honest the distractor has been working on me all day. I haven't been the sweetest person and I almost didn't stay up to write to you all. But somewhere deep inside I knew Satan was working overtime to keep me from doing God's will. So many have been encouraged by the words God puts on my heart and fingertips, that I must not let Satan stop me.... So as I was saying before that rude interruption, God is more and more real each step we take in this illness. To have such great peace and assurance can only come from a loving and caring God. Stormie also wrote, "Often we find ourselves in the midst of a dark situation, we immediately believe we must be out of the will of God. That might be true, but if we've been living in obedience to the Lord to the best of our ability, we are more likely right in the center of God's will." To think there could be dark times in the center of God's will may be unsettling. Yet knowing that He is there with me and that He is using the darkness to grow me into someone better, than that is where the blessed assurance comes. I've often heard that, God loves us so much that He won't leave us the way we are.
Well, so far the spider has not crawled back out, but I'll ask Mark to check it in the morning! Ha! Ha! Please pray for no more "spiders". Also pray for Steven and Karrie to be healed from their colds especially with Steven's birthday right around the corner. We are looking forward to a wonderful week and a half since we will not start the next round until the 24th. Prayers for many good memories and fun. Please also pray for our friends still at the hospital. Jonah started the transplant today and now they wait and wait! Pray for his body to start making stem cells and then all the other cells that are needed. Pray for his mom, Vanessa, as this lengthy stay may be rough. Also pray for Taylor, Tricia, and Jarrod again. Taylor had an infection in her central line on one side and now it is also on the other side, so they operated today to remove the central line, put in a temporary one until her ANC come back, and then she will be operated on again to put in a new central line. Our short visit today found Tricia and Taylor having a tough time and rightly so. We ask for prayers for their strength, peace, rest, and healing! May our friends feel the prayers you lift for them and be encouraged that our God is working for their best.
We love you all and thank you for the prayers, meals, e-mails, gifts, encouragement, and love! We know God will see us through to the very end! And we trust that the end will be within His will where only the best is good enough for His children.
Trials and Temptations:
Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything. If any of you lacks wisdom, he should ask God who gives generously to all without finding fault, and it will be given to him.
10-11-05 Tuesday THANK YOU FOR ALL THE PRAYERS AND ENCOURAGEMENT DURING THIS HOSPITAL STAY! WE ARE GOING HOME TODAY!!!! PRAISE THE LORD!!!!!!!
Karrie is doing good and did a little "We don't have to stay here anymore!" dance after the doctor gave us the ok! We will be back for clinic on Thursday for counts and to meet with Dr Patton about the test results to understand them better. Hope you all have a wonderful day!
10-9-05 Sunday God works for the good of those who love Him and are called according to his purpose!!!!!!!!!! Romans 8:28
Be joyful in hope, patient in affliction, faithful in prayer!!!!!!!!!! Romans 12:12
...Hope and a future....!!!!!!!!!!! Jeremiah 29:11
Our God is good! I have to update everyone even though it is late and I should have been in bed hours ago. (I did try, but with many interruptions I wouldn't have slept anyway.) We received the papers with the results of the CT scan and the MIBG test!!!!!!!!!! We are so thankful and overjoyed by this victory in this battle we've been in. The scans/tests SHOW ONLY A "MARKEDLY" TUMOR AND NO OTHER CANCER CELLS!!!!!!!!!!!!!!! This means that the right wrist and knee have been healed!!!!!!! There were also lymph nodes around the tumor (we don't remember this) that are also clear!!!! We need to sit down with a doctor and get the complete info in layman's terms and hopefully also see the scans with our own eyes. If we are reading the info correctly, the size of the tumor did go from 8x12cm mass on 7/7/05 to 4.5 x 2.5 x 6.5 on 10/6/05 . So about half the size!!!!!!!! Karrie told Daddy this evening that, "the papers came in the and bad thing is going away."
As for Karrie and her fever, she did well Friday evening with a little eating, artistic cutting and writing, then walking and riding, too. She remained warm despite our cold room. On Saturday she had the 99 temp that they don't consider a fever, but with as cold as our room was I wonder if her temp wasn't really higher! She did have a high heart rate, which was caused by her low hemoglobin 7.3. She slept until 10:30 and only woke because I had to give her meds. We snuggled a lot since our room was so cold! We found out that our vents were blowing 56 degree air into our room. UGH! Maintenance worked to correct the problem. However, the hall warmed up, but not our room nor any of the other three in that hallway. Karrie's platelets were also low at 5 (5000). We beat the heat by walking and riding the tractor around the floor which was warm! She got a platelet transfusion and later Steven and Daddy arrived. Her and Steven played trains and wrote on the big white board. She also napped with Daddy and was warm and toasty under her pink blanket! We finally got the go ahead to move to another room up the next hall (5641). I was so thankful to be warm again!!!!! Karrie continued an active evening even though she was pale. She didn't get her hemoglobin transfusion until after 12:30.
Our night was restless and full of sleep interruptions for Mommy, but Karrie seemed to sleep continuously despite her labored breathing, sleepy jolts, and the nurses and residents in a lot. However, she had another fever at 6:30 this morning! UGH! More tylenol, blood cultures for 48 hours, and another antibiotic. Her temps were normal the rest of the morning and she slept until 11 or so, only awakened because she had to have meds. It was a non stop morning with a dressing change over central line, wash down, chest X-ray, diahrea, and a visit from Grandma and Grandpa Richard. The second antibiotic caused her to turn red and get itchy, so she had Benadryl also. She was very inactive and her fever was back by early afternoon. After napping for two plus hours, she was glad to see Daddy and Steven and Grandma Dodez. She was busy playing board games with them and then to the playroom to ride the tractor and the Pooh car. She finally ate a bunch of Fritos after not eating much for several days. Her feeds are still going well thankfully so she is getting the nutrients she needs! Mommy and Karrie had some special time together before bedtime tonight. She did turn red again with another dose of the antibiotic, but no itching this time.
We want to thank you for your specific prayers about the cancer cells and tumor. God is hearing your prayers and faithfully answering them in His time! We ask for more prayers for the fever to be gone, no bacterial growth, and counts to come back up. And that we can go home by Tuesday. Please also pray for rest for everyone! Our other NB friends are also struggling. Jonah is in for the last chemo that leads into transplant this week. He has had trouble with vomiting, but at first seemed very active and healthy! Also pray for his mom, Vanessa. And Taylor got to go home last night with NG tube in place (after three tries - UGH!), but then was called this morning to come back because a blood culture was positive. Please pray for Jarrod and Tricia and Grandmas who are trying to make Taylor comfortable and happy with a lot of hall walks!
May God receive the glory for all He has done! May your day be full of blessings! Good night, (actually morning - UGH!)
10-7-05 Friday We are here at our second home once again. We've been here a lot this week actually. Let me update you from where I left off Sunday night. Monday was pretty much the same as Sunday: good sleeping, lots of playing, and eating ok. Aunt Holly came to play which Karrie loved! Karrie also has gotten quite good at playing a Little People games on the computer. She played with Steven a lot and later that evening went over to our new neighbors to play with Corey. They had a blast! Our day was mostly uneventful except for a slight scare about Steven's exposure to chicken pox that ended up being a child in his class had a reaction to a wooly bear.
Tuesday, Karrie was up early and saw Steven get on the bus, which is always a special treat! She was tired early and after Mommy lap time, she took a nap before Steven came home, waking just in time to watch him get off the bus. She did complain of tummy pain (gas) and sore throat (dry?). She played outside again and on the computer, but wasn't eating much. She seemed to be more irritable and easily upset and emotional. (Now that I can relate to!) Mark and Amy got away for a little while to go to Steven's parent/teacher conference. We were glad to hear that he is doing very well. Had a 29/29 on the state KRAL test and he has adjusted well, made friends, keeps the teachers updated on Karrie, and loves recess. (No surprise there.) We were relieved to hear all the good, yet still feel like we need to do more with and for him, but have not had the time with all the extras for Karrie.
Wednesday was rough with diahrea early in the morning after a good dose of constipation meds the night before. Karrie had not gone BM since Friday. Constipation is another side effect of the chemo. We had an appt in Clinic for counts and then Radiology for the start of the MIBG scan. Karrie played Little Bear on the computer in the waiting area, but then had several episodes of gagging and throwing up clear mucous (sorry for the details). This concerned Radiology, because she may not be able to be sedated tomorrow if she became sick. So we headed back up to the clinic and was checked by Dr Hord and he gave the ok to move forward. An X-ray of her feeding tube was also done since it seemed to be the cause of the gagging. That was also ok. She seemed to bounce back each time and played in the bear kitchen serving up some yummy drinks to Grandpa Richard and Mommy. After receiving the nuclear med we found out her white counts were low as expected (100). However, her platelets were not too bad at 97 and her hemoglobin was great at 12. We returned to Radiology at 3:30 to do the first part of the MIBG scan. Karrie was tired and watched Barney and only cried once after a cough. We were glad to finally head home by 4:30. Quick evening and to bed early after our long day and an earlier one on Thursday.
Thursday began with a 7am arrival to Radiology for contrast to be put in her NG tube for the CT scan of her chest, abs, and pelvis at 10am. Karrie and Mark played and cuddled in the waiting room and she was a much healthier and happier girl than the day before. We did have to do a dressing change over her central line because it was open at the top. (Not a good thing!) Then she had to be poked with an IV for the other contrast which could not be put in her central line. They sedated her slightly for the CT scan and she did ok. Then she "slept" peacefully for the MIBG scan which lasted an hour and a half. She played last night, but not for very long other than her time on the computer. She is a bright one! Karrie did not eat at all and only drank a few sips late in the evening. However, she is getting her night feeds. She fell asleep easily last night and so did the rest of us!!!
Well, we thought 7am was early to go to the hospital, but we decided to try to beat that time! After getting up about 2:30 am to give Karrie another can of feed in her pump, Mommy noticed she was warm. And of course the thermometer confirmed our fears - Fever of 100.9F! After a call to Children's we were told to bring her in. So by 5am we had a room (5653) on the Hemoc floor and by 6am we were back to sleep. They did take her temp several times and it ranged from normal to 101.5 with different instruments and operators. And of course she was poked and prodded not to her liking. She is on an antibiotic and her blood cultures were drawn. Now we wait! And wait! And wait! The doctor said that as long as the cultures do not grow any bacteria we will wait for her white counts to start coming up and then we can go home. Karrie has ran a fever every time about 7 to 10 days after a chemo cycle starts, and only once had a bacterial infection. So we are hoping for only a couple days for this stay. Karrie's fever has come down and she seemed perky, ate a little, played a little, had more Daddy time:-), and then it went up a bit again. She is napping now and I plan to join her soon.
Thank you for your prayers for the tests done this week. We did get through them, so that is a praise! Yet we did not want to be here another day and especially not for a fever. I am once again amazed though by the way God speaks. Last night I had read a chapter in a book that Charlotte Daum gave me (Just Enough Light for the Next Step?? I think?). And the encouragement God gave me was that this world is constantly changing and we long for stability. We can only fulfill that longing in a never changing God. He is always constant. Wow! So as we endure another trial or change in our schedule, we are trying to focus on our God who will carry us once again.
A prayer praise about the scans. The doctor said today that the CT scan showed the tumor still there, however, it has a "significant reduction" in size. He believes that it could be 50% or more. Too be honest we had hoped for nothing to be there, but at least we are going in the right direction! The MIBG scan results could come back as early as Monday or Tuesday. So again we wait. Please pray for the white cells to grow, fever to subside, no infection, MIBG to show no cancer cells or at least a continued reduction, and for us to get back home soon. Also pray for more days of the family of four not being separated. It's not easy, especially with lack of sleep! Steven seems to be doing ok today. Thanks to Grandma & Grandpa Richard and Aunt Cindy!!!!! We cannot walk this road without you!
With counts low we may not have much visiting, but would enjoy your e-mails or calls. Thank you for all your encouragement and support! We love you all!
10-2-05 Sunday We are truly amazed! Why should we be amazed at how well Karrie is doing, when we have such an Awesome God who is in control? I guess it is just a human way of thinking. (And believe me, I've been doing a lot of that lately.) Your prayers are working God's hand in this trial we are enduring! Thank you! Praise the Lord!
Since the last update Thursday Karrie finished the day with several laps around the floor with her IV pole, play in the activity room, ate pizza, and enjoyed Daddy. Her vitals were good including her weight. She got to bed early, but we had a long night of up to go potty often, sweating a lot, and problems with meds and water not staying in the NG tube, plus the IV and such beeping more often then before. Friday was a bit tougher, probably more from lack of a goodnight's sleep. (At least for Mommy, that was the problem.) Karrie did have a very peaceful - almost smile - look on her face when she woke that morning. But then she would be up for shorter periods and wanting to drink and eat, but not really doing either. She did perk up when Grandma and Grandpa Richard arrived. And she loves Grandma's orange pop! She tried to convince Mommy that she should have it all the time. NOT! She took a long nap after a "bath" and lunch. She loves boiled eggs. Her attention span was stressing Mommy: 15 minutes into a video she would want a different one and then 15 minutes into that one she would want music. A normal three year old, right! Daddy and Steven came to visit that evening and Karrie ate ok and took a lap around the floor before going to sleep. We had a very rough time getting an oral medicine in her and then she threw it up and then had diahrea. However, we slept much better that night.
On Saturday, Karrie ate better and we even watched a whole video all in one sitting! She also tolerated the blinds being open (side effect - sensitivity to light) by wearing her strawberry sunglasses. How cute! Mommy and Karrie had fun singing and such to music, too. On rounds Dr Hord said she would need a transfusion because her hemoglobin was down to 8.2. She had looked pale for the last day or two. Her platelet count was normal, but her white cells were only 2000. Dr Hord also assured us they would be able to get us out of there by 8pm. YES! We took an early nap and had a late lunch before Daddy and Grandma Richard arrived. We took a walk to the activity room to play pool with Grandma. Karrie's blood pressure was high several times, but the nurse did not seem concerned about it. Karrie fought sleeping again but finally crashed about 7:30. Chemo and transfusion finished by 8:15 and we were ready to go home. Well, all of us but Karrie. She didn't want to get up to go. Eventually, we headed home to arrive about 9:30pm to our welcome crew of Steven and Aunt Holly. (Thank you -Holly! A big help with Amy's back still hurting!)
So after an uninterrupted good night's rest, Karrie woke about 9:45 wanting her Daddy! How sweet! She was a Daddy's girl today, but shared lots of hugs and kisses with Mommy, too! She ate a lot for lunch and supper, too, and has had no nausea!!!!! And this is the amazing part - we think she is very close to being back to her normal self. She has no trouble getting around on her own. She's eating and drinking, playing and skipping, laughing and loving. We are amazed!!!! She managed to play in her bed for several hours instead of napping even though she seemed tired. And she endured another shot of Neupagen to grow the white blood cells. Mommy tried to talk the doctor into the IV form, but they have good reason to believe it does not work as well and could open her up to infection. So they gave us a cream used to numb the area. It didn't work tonight, but we may need to stick closer to the time frame and hopefully it will help tomorrow night. We have started up the night feeds again in hopes to give her some nutrients and fiber that chips, dip, and popcorn do not have.
As for the rest of us, we are enduring not so well at times. Steven is very soft hearted and seems to pout and cry about anything that doesn't go his way. Mommy is overwhelmed and overloaded, plus still fighting the pain. Although a good sharing at church, a good cry at home, and some meds for the pain will hopefully do the trick. Daddy enjoyed his daughter immensely today, but has the scan results on his mind. We are feeling your prayers and God is still speaking to us and even though it is difficult at times, we are listening. Thank you so much for your e-mails and cards of encouragement! We know God is using them to lift us up and give us what we need when we need it!
Please pray for our week ahead. We will be going to the clinic for counts and radiology for the nuclear medicine on Wednesday. And then returning on Thursday for the MIBG scan (shows the NB cancer cells) and a CT scan of her chest, abs, and pelvis. PLEASE pray for no cancer cells or even no tumor. We know God can heal her as we speak, but we also know that His plan may not include that right now. Pray for His will because it is BEST and for the emotional roller coaster we are on. We will also be challenged once again by low counts (or no counts) and will need prayers for no fever or return to the hospital for infection of any kind. Karrie questioned why no one came to see her today. Bless her heart!!! Unfortunately, there may be more days like that for another week. Also pray that Steven stays healthy and even that his whole kindergarten class remains in good health! May God be glorified in the days ahead and may we all be amazed at how He works out His plan in each of our lives!
9-29-05 Thursday We've had a very good several days. We went to the zoo as a family on Saturday. Mark and I both commented how nice it was to go a distance away from home, but not to a hospital, and for all four of us to go. Karrie did great and loved the monkeys best. She liked watching them swing from rope to rope. She rode in the stroller a little, but walked mostly or was carried. Steven liked the seals and their tricks in the water. Mark and I just enjoyed the family time.
Karrie still had a runny nose and cough for several days. The coughing has stopped, but she is sneezing more today, so the nose is running some. She was more and more herself with each new day - wrestling and giggling with Daddy, very talkative and curious, playing with Steven and by herself, and singing and dancing a little. She had fun with playdoh in the 3-4's room at church on Sunday with Mommy and kept up with her cousins Sunday evening when we got together for an impromptu supper. She played dolls and kitchen with Grandma Dodez on Monday before nap. On Tuesday we helped make applesauce with Grandma & Grandpa Richard and then played frisbee outside. We were happy to hear her turn off her fan and monitor when she was done with her naps this last week instead of waking up crying. And as siblings, Steven and Karrie have not missed a beat when it comes to fighting and learning to share again. However, they are quite the pair when they are hugging and loving each other! And together they went over to meet our new neighbor boy, Corey, who is also three. They loved his John Deer tractor and helped run the battery down. (Sorry Chuck!) Karrie also sustained a goose egg bump on her forehead after tripping over Steven's feet in the kitchen Tuesday evening - splat and ouch!
Karrie had good counts on Wednesday at the clinic and we were taken to our room 5619 after 1pm and the flush started. The chemo started after 6pm and will run until Saturday evening. We are over a fourth of the way into this fourth round of chemo and they say we will be able to go home Saturday night or could stay until Sunday depending on how things go. So far today Karrie has been busy like any three year old - eating, singing, coloring, painting, Barneying (a new word), and now napping!
Mommy has got an awful pain in her lower back and hope to get relief soon! The bed was actually very comfortable last night, but maybe a twist the wrong way??? Or picking up Karrie on and off her bed and the potty may have done it?? Good news for Taylor and family: they are going home today after an extended stay (4-5 weeks). She still has a fever, struggles with walking, and has lost quite a bit of hair. Amy got to talk to Tricia a little and later Tricia's mom for quite a while. God is working in their lives! Mark and Jarrod also got to talk last evening. They will be returning next Tuesday for round 2 and hopefully that stay will be shorter.
Mark and I struggle with life changes, end results, and the daily tasks of caring for Karrie. We have learned of many other NB cancer children who are not doing so well and it scares us. We don't know if we are crying more or praying more at this point. However, we also realize God has provided a lot of miracles along the way: no NB cells in Karrie's bone marrow, her ability to get back to normal after each round, the 3rd round not as bad as it could have been with nausea, her counts rebounding each time, staying on the 21 day cycle rather easily, being able to doctor at Children's for now, and Karrie gaining back her weight with the help of the tube feedings. We know God is working in our lives because of the many prayers each of you have offered on our behalf. We appreciate you each more than you will ever know. God has a plan and we are assured in His Word that it is Best. Please pray for our faith in the good and bad times, communication between everyone involved, Karrie's health, and for the scan's next week to show nothing or at least a huge improvement! We love you! Thanks for your cards, e-mails, meals, help, and love!!!!
9-23-05 Friday PRAISE THE LORD! We have made it through another round and the aftermath!!! Karrie had no fever on Wednesday and was more like her old self again - energetic, talkative, and playing more. She does however still have a runny nose and has started a cough. We visited the clinic on Thursday, but not before some morning vomiting. With the clear runny nose and without much food or drink going down her throat she seems to collect a lot there and then.... Well you get the picture. Anyways, she was worn out that morning since the night before had been a long one - restless to say the least. She wasn't happy to go get poked again. But once they told her no more Neupagen shots for now, she perked right up. Her counts are on their way back up, too. For those of you who like numbers: white blood cells 8.2, platelets 50, and hemoglobin 10.2 and not much change in weight. We are set to start round four on Wednesday, September 28th. They will not be able to get Karrie in for the scans/tests until October 5th & 6th. So we will have to wait to see how much the tumor has shrunk and if the boney areas are clear yet. But we trust God is working and we will be amazed! Karrie was again much more her self today! Miss Independent somewhat! She enjoyed spending the day with her Aunt Cindy and even enjoyed her brother, Steven! It is such a joy to see those two play together again (and fight some, too.) Please pray for the cough and runny nose to subside! We will be off to the Cleveland Zoo with a group from our church tomorrow (Saturday). The kids are looking forward to it and it will be really special to do something all together for the day! Also talked to Tricia, Taylor's mom, on Thursday. She was on her way out to run errands and see her boys that she hadn't seen since Sunday. They had to only spend one night in PICU and Taylor's counts are coming back up and the blood products don't seem to be "lost" anymore. Taylor is still running a fever though (101.5 and up). Continue to lift them up to our awesome God! They expect to be there through the second round of chemo, but maybe they will get to go home for a couple days. Thank you for your prayers and support, help and encouraging words, love and cards. We thank God each day for all of you! We know God is working through you to comfort and strengthen us! We love you! Our prayer is for God to speak to you in your time of need and provide people to be His hands and feet for you also!
9-20-05 Tuesday Hello again! We have once again come home to sleep in our own beds. Yeah! Some have gotten to bed much earlier than I have, but that isn't unusual, nor anyone's fault but my own. I'll start where we left off on Saturday. We are happy to report that the vomiting is over for now! And the BMs are improving each day. So the obvious side effects from the last chemo are pretty much history for Karrie. However, with each dose of chemo that kills the bad cells, many good ones go bye bye as well. And as it has happened with every round so far, Karrie has begun a fever. Karrie's normal temp is usually around 97F. Saturday she had high 98'sF and then Sunday she did 99'sF. She didn't seem sick though most of the time. She's just tired - napping 3 to 4 hours and sleeping about 12 hours each night.
On Monday we started the gradual rise in temp from 98's & 99's in the early am to 100 - 101F by late morning. But again she didn't act sick and continued playing until she got tired. And of course the temp would decrease only to rise again. A call to Children's set a plan to wait for 101.5F sustained or if she acts sick for a period of time. The medical people don't see 99's and 100's as a fever or at least not ones to be concerned about.
So her temps continued to fluctuate and we made it through the night and to our appt Tuesday morning at the clinic. Karrie's weight is up 13.5kg (29.7 lbs) to 14.2kg (31.24 lbs). Her temp was in the 99'sF and 100'sF the whole day there. (Yes, we spent 8 hours at the clinic today.) Her white blood counts are coming up, but only 200. However, her platelets went down to 2 (this is actually 2000) and hemoglobin down to 7.2. So we had to get platelet and hemoglobin transfusions today which took about 4 1/2 hours. Akron had no platelets and had to get them from Cleveland Red Cross. If you can, please give blood and more specifically platelets!!!! We were fortunate that it only took about 2-3 hours to get them. Others have waited days. Karrie did quite well with snacks, Barney videos, leap pad, and finally a nap. Grandpa and Mommy snoozed a little, too. They did also take a blood culture, but at 4:30 it was still pending. We were cautioned to watch the temps and bring her back if 101.5 comes about for a while.
As of Saturday Karrie has become more and more a Daddy's girl. She misses him when he's away and then they are inseparable when he's home. Despite the fevers Karrie has done some singing, dancing, painting, outside play with balls and tricycle, played games, fixed meals in her kitchen, and diapered her baby dolls. She has also kept down her night feedings even with increases and usually eats bites of several things by late afternoon and suppertime, as well as drinks several ounces.
Steven is still enjoying KG. He's had a substitute bus driver this week and he told us the first day that he went the wrong way. Actually, just not the way Steven is use to. It is amazing to listen to him tell how they go on this road and so and so gets on or off and then another and another. He's also completed some KG testing issued by the state - no results yet. And his first time for Show and Tell was today! Guess what he took? No, not his favorite train, ball, or even Mr Incredible, even though Mommy and Daddy encouraged him to. He had helped Daddy get the mail the other day and in it was yellow paper with a picture of lost dog whose owner's name is Ted. So he chose to take it for Show and Tell. He describes it this way: "A Ted that my Daddy doesn't know has lost this dog." We know a Ted, but not this one. How cute! Steven likes to keep busy. He thinks there should always be someone to play with him or somewhere to go. Mommy needs to learn to play more now that Karrie still naps and Steven doesn't always.
Amy also got to visit with Tricia and Jarrod (parents of Taylor) today at Children's. Surprised to find them in the PICU (pediatric intensive care unit). Taylor's tumor is bleeding, but she is also losing blood. She has had transfusion after transfusion and they don't know where it is going. They did a scope this morning and moved her to PICU. Tricia and Jarrod are still somewhat positive, but physically they are worn out. And mentally and emotionally, it is only getting tougher. Please pray for them again! Pray for answers to the questions and knowledge for the doctors. And pray for the tumor in Taylor to be taken away by God's mighty hand. My heart breaks for these little ones and the pain they are suffering. As parents it is so hard to watch and feel so helpless. God is still in control and He remains unchanging in goodness, love, mercy, and strength. He knows where we are and continually gives us people in our paths to encourage us and share with us.
Please pray for Karrie to be freed from her fevers and get back to her old self as her counts come back up. We will be at the clinic again on Thursday for probably another transfusion of platelets and to check her fevers, etc. Hope to report from home again on Thursday or Friday. Thank you everyone and God bless each of you as you serve Him faithfully!
9-17-05 Saturday Just a quick update to let everyone know that we did make it home to our own beds last night. Actually we were home for naptime. Mommy and Karrie got in a much needed 2 hour nap!!!! We did not fair well yesterday morning though with vomiting and diahrea leaving not much of the night feed in her. We need to give the nausea med a little before the 12 hours to beat the vomiting. Aunt Laurie went with us to the clinic so Daddy could get a day in at work. Steven got on the bus on his own before we left. (He told Aunt Laurie she could wait up at the house and he stood in the drive by his self.) Karrie whimpered only a little before the finger poke for the blood and then bravely chose two Barbie band aids afterwards. We went for lunch and Karrie wanted cheese pizza, but of course Mommy ended up eating it. Karrie was very tired and didn't play much in the waiting area.
We did visit with Taylor, Tricia, and Jarrod again today. Taylor (2) still has a fever and the doctor believes the tumor is bleeding on the inside which is good. She is eating and wants to be on the move, but only in a wagon or carried. Tricia and Jarrod seem to be holding up well and always seem positive when we talk, even though they will be there a lot longer. Their two boys (5 & 8) have been up to visit and are also doing ok. We also saw Jonah (4) and Vanessa and the date for the transplant has not been set yet, because he is still doing all the preliminary tests. But he is feeling good and doing well. Also talked with Sherry whose son, Derek (15), has Ewing Sarcoma (cancer) reoccurrence after seven year remission. He was in for a day of transfusions. Please continue to pray for these new friends of ours.
Karrie's counts have dropped as expected. Her white count is at zero or at least too low for them to tell. We are definitely LIMITING VISITORS except for Grandmas & Grandpas. She cannot be exposed to anything because she has no white blood cells to fight off infection. Her platelets are only 49 so we have to watch her after shots or any other cuts and make sure she clots ok. They did not think she needed a transfusion yet. Her hemoglobin (anemia) is 9.6 which is ok, but down. She had no fever and her blood pressure and heart rate were fine. Karrie was worn out from the day, but after our nap she played with Steven and Aunt Laurie and ate several bites of supper, plus enjoyed a curly straw to have juice/water. We all took in some home theater time watching a new Vegie Tales video and got her meds in early enough.
So far today (Saturday) she has gotten her nausea med while asleep, completed her night feeding, and is still sound asleep. Her first 12 hours straight of sleep for months. Mommy and Daddy would like to try that someday! Ha! Ha! Again thank you for the prayers and please continue them and update those you have shared our struggle with. We love you all! God be glorified today and everyday because of the love we share. PS. Amy's foot has improved with some down time and ice pack applied often. No doctor visit yet.
9-15-05 Thursday Sorry it has been a few days since our last update. We have been busy! Let's see where to begin! We came home to nap on Sunday afternoon. She wanted to eat supper, but didn't have much all day. We were sent home with the Neupagen (white blood cell growth stuff) in IV form, but had the wrong size syringe for the pump we were given. Long story short, we were given the shots instead. Karrie cries, but she is a trooper! Mommy and Daddy are not so strong! Monday was a quiet day. Karrie did a lot of sleeping, little eating, and only a little diahrea. She did keep down one can of the night feed. As the day went on she would have a little more energy and interest for a short time to play. Brother Steven got to help Grandpa Richard outside here and then went to Grandma & Grandpa Dodez's to help Uncle Scott redo the walk and steps. We have pictures and he was a good little helper! He also played with Aunt Janet. Mark's brother and wife from Texas are here for a week. So good to visit with them and Steven loves them!
Tuesday found Karrie a bit more active but the vomiting had begun. We tried 2 cans of night feed and she didn't keep much of it in. She did get out with Daddy to see Steven get on the school bus. She always felt better and wanted to play after she vomited. Aunt Laurie arrived in the morning and Karrie was ready to play. Aunt Laurie is a speech language pathologist and has many games. The kids love when she comes to play! Steven, Amy, and Mark met Scott and Janet at the Wayne County Fair that afternoon to watch Steven ride the Fun Slide at least 30 times! He loved it! We've decided he has a need for speed! The other rides were one timers and not very exciting to him. Good to see and talk to many! And of course we filled up on fair food. Karrie was home with Aunt Laurie and Grandma Dodez and was more active and talkative then the evening before.
On Wednesday Karrie had several episodes of vomiting and diahrea. Although once again she felt better afterwards and was on the go again. We went to Children's clinic to check counts. Her counts were actually up (white blood cells 6,000+, hemoglobin 11+, and platelets 100+), yet they expect them to come down again. Her blood pressure and heart rate were high which meant dehydration. She was put on IV fluids for several hours and they also changed her nausea medicine since it didn't seem to be working well enough. She has lost 3-4 pounds since Saturday, but doesn't look as bad as she did when she lost the 5-6 pounds in July. No fever yet. She perked up more and once again was playing again making cake for Daddy and Mommy. Amy got to see Taylor, Jarrod, and Tricia who are keeping a positive attitude. Taylor finished chemo on Tuesday, but is still running a fever. They hope to go home by the weekend. Karrie ate very well for supper that night and was much more talkative, happy, and healthy. We have continued the night feeds in hope that they will eventually stay with her.
Karrie had more diahrea today, but is progressing toward more normal BMs. And thank God - no vomiting!!!! She once again enjoyed playing with her Aunt Laurie today! She only ate a little bit and seemed more tired and clingy even after a nap. Steven had another busy day at school and seems to not be able to stay on his feet out at recess. He has come home the last two days with skinned knees, plus an elbow today. He says yesterday a girlfriend was chasing him, but she didn't catch him even when he fell. He loves school, especially riding the bus and running at recess. We enjoyed a wonderful supper at home with the whole Dodez family. Scott and Janet will be heading back to Texas this Saturday.
As for us we will be taking another trip to the Children's clinic to check Karrie for counts and see how she is doing before the weekend comes. Pray that all is well and we get to enjoy our own beds another night! That's the scoop for now! Thank you again for all the prayers and encouraging e-mails. Please pray for our faith to remain strong and to be open to the spiritual growth that God is working in us. Also please pray that nothing too serious is wrong with Amy's foot. She's had foot problems for years, this time it's different. A doctor visit may be in order for her tomorrow, too! We love you all!
9-11-05 Sunday We are happy to report that we are going home as scheduled after only a four day stay. This is a record for us because all the other stays have been 7 to 12 days! It's nice to have packed too much instead of too little. (Mark appreciates this as well!) I am also happy to report that we are thankfully back on our link to the outside world (computer).
We didn't fully understand this round of chemo, other than it was going to be bad. Another words we did not do our homework and read our road maps. (These tell meds and how much and how often, etc.) Chemo began approximately 5:45 pm each day and the Etoposide was given for two hours, flushed about 20 min, then the Cisplatinum (bad) was given for one hour, and then flushed for six hours. So the chemo was done by 9pm and then she had to pee a lot the next 6 hours. She slept well and had diaper changes often and at least once a night a clothing change.
The morning was ok on Thursday and she ate breakfast, lunch, and supper that day. But each morning got a little slower with no desire to eat, sleeping longer, and then gagging/throw up when the steroid was given with the nausea med. This is a normal reaction. But by lunch on Friday and Saturday she was up and at it: eating, playing, moving, singing, etc. (Thanks to Aunt Cindy and Cousin Lindsey on Saturday!!!!) The evening got shorter each night with her tiring sooner than the day before.
So all in all, she has done very well. But we are still cautious with the likelihood of after treatment nausea and vomiting. Hopefully, we will keep her medicated enough. And hopefully, with her counts dropping we won't be back here to stay again this week. Having said that, we caution anyone coming to visit who is or has recently been ill (including colds) Karrie's white blood counts will be too low for here to fight infection for a couple days. Unfortunately, Mommy is fighting a scratchy throat and runny nose.
Our prayer requests are for no fever, for her to eat and drink and take her NG feed ok again, and to have no vomiting or nausea - or at least keep it controlled with meds. We will come back to the clinic on Wed. to check counts. Hopefully, we will not be staying as has happened the last two cycles. We also request prayer for our new friends on 5th floor at Children's who also have Neuroblastoma stage IV. Jonah is a 4 (almost 5) year old and has completed his 6th cycle. He is doing very well and moving around like Karrie did last week! He will be coming back for transplant next. They did get all of the tumor during the surgery and no tumor cells are in his bone marrow anymore. Also pray for Vanessa his mom and a positive warrior. Taylor is a 2 year old girl just diagnosed this last week. She began her first round of chemo yesterday. Her tumor is in her liver and the cells are in her bone marrow. Please also pray for her parents who are starting a long road and struggling like we did.
Thanks again for all your encouragement and gifts and help. We love you all! May God be with each of you in your own trials! He is good and can be trusted with your every need and concern. Praise God for a beautiful day.
9-10-05 Saturday Happy Weekend Everyone! Karrie's Aunt Cindy is sending this update your way. Amy Lynn is having some issues with their internet connection and email at the hospital so she hasn't been able to respond or view any emails. We will keep you posted...as for Little Miss Karrie, she is doing great. Round three of chemo was started on Wednesday. She has received it every day after 5:00pm, which Amy said has worked well in that she has slept through most of it. Today is her last day and they are pretty sure they will be able to come home tomorrow (Sunday). She had a little naseau this morning but all in all has responded well to this round. Her appetite has decreased each day a little bit but she is still eating. They have not done any tube feedings during this round. Lindsey (cousin and my daughter) and I were up to see her today and she was wonderful. We played, sang songs, took pictures (I will upload to the photo album), ate lunch, and made many laps around the floor on the play John Deere tractor (try carring a baby doll, a backpak, pushing an IV apparatus and providing directions on what not to hit and where to turn to a 3 and 7 year old)! We were quite the sight. She also made lots of calls on her play cell phone and couldn't figure out why she couldn't keep Aunt Cindy's real cell phone for a couple days. She was very tired when we left (you know that stare off in space tired) so mom and her were going to try to catch some zzzz's before more visitors this evening. Please pray that her blood counts are good and her recovery period is quick from this round. She amazes me with her endurance and strength through all of this.... she is like the energizer bunny.....she just keeps going and going and going! We love her so much!
9-8-2005 Thursday We are here at Children's hospital in Akron for our first night for cycle three. We have had a very energetic, happy, and healthy girl today!!! Once we were admitted she ran around the bed, took walks to the playroom, sang on the couch by the big window, and rode in a wagon. You wouldn't know she had cancer! She has gained back her weight - now 33 lbs!! She did well for an EKG, EcoCardioGram, and a hearing test. We are so proud of her!!! Her blood counts were ok and she also ate and drank better than usual. We actually believe she likes hospital food better than food at home. Chemo began this evening. This is a different cycle with different meds given for a shorter time than flushed, then given again, etc. She has to pee often and has chosen to use the potty each time. Potty training is back on! So far no sign of nausea and they have given her meds to help with that. Since there is a greater chance of nausea and vomitting they have stopped the NG night feeds at least for a few nights. As you have noticed, we are able to e-mail!!! Thanks to Mike Molter and PRC we have a laptop to use for the next several months. No internet or e-mail charge to us from here or at home. Glad to here from you! We can also be reached at 330-543-5621. Our room # is 5621 if you come to visit. Also take a look at the adorable Karrie at karriedodez.com and learn about the cancer, Karrie, what we are doing, and how you can help! Thank you Aunt Cindy for all the work you put into the site! It looks great!!!!!!!!!!!!!! Karrie has already enjoyed looking at the photos. We hope to learn how to do the progress reports so we can update you that way. Thanks again for all the prayers and please forward this on to whomever is on your e-mail list. We want to make sure that those praying for us know that their prayers are helping and we feel them everyday! God is good and He is in control!!! Well, good night for now (or good morning depending on when you read this)! Pray for good rest and no nausea! We love you!
This is the first update made to Karrie’s website. Included is a summary of what she has experienced to date and what is planned for the next few weeks/months. Our hope is to update the site on a regular basis to keep everyone informed of her progress. In June of this year Karrie ran a ten-day fever with spikes up to 103 and 104F. This was not uncommon for her because she had always been our spikier and Steven, her brother, was the puker. Steve also got sick and several children in our area were experiencing similar illnesses. We went to the doctor and found no localized virus (ears, tummy, nose, throat, etc.) and he prescribed an antibiotic. Even though she continued with the fever we chose not to do any further testing since Karrie went longer hours each day with no fever. Plus other families with similar fevers had found nothing with their tests.
Five days after her fever stopped we began serious potty training. We had preschool coming this fall and Mommy hoped Karrie would agree to go on the potty and not in her diaper now so she could be ready to go to preschool. We were quite successful with minimal accidents; however, she refused to go potty (nor in diaper) away from our home or at home with anyone but Mommy. So the days Mommy worked (8 hours) Karrie would only go maybe one time for her Grandmas. She would not wet her diaper or pull-ups either – going dry for a very long time.
In the beginning of July she had maybe an eye allergy of redness, but not much matter. She also began to lie around quite a bit and did not want to be outside much or for very long. By July 3rd we suspected something when she laid on the floor in her Sunday School class at church. We had a birthday party planned for later that day, as Karrie would be turning three that week. She again had no energy for playing with her cousins and was very pale and clingy. She began another fever that evening, but only 100 – 101F. On her third birthday (7/5) we went to the doctor that evening and found nothing but a high fever (102F). The diagnosis was chronic UTI fever of unknown origin. The doctor ordered blood and urine tests. She ate well that night, but then also threw up. On Wednesday she seemed better when she began playing more and urinating normally.
The blood tests showed elevated white blood count of 13,000 (normal is 5,000 to 10,000) that indicated her body was fighting an infection of some sort. Her hemoglobin was only 9.3 (normal 10-12) defining her as anemic and explaining her paleness. Nothing found from the urine test. The doctor ordered further blood work and an ultrasound. However, the ultrasound could not be done until the following Monday (five more days) and we had already endured three long nights of Karrie kicking and crying with no way to alleviate her pain.
On the night of July 6th Karrie spent about two hours going from crying to sleeping only in Mommy’s arms while Daddy investigated our insurance coverage for Akron Children’s Hospital. She then fell asleep about 11:30 and we decided to go to bed for the night. The night was long, but we knew we were heading north in the morning.
On Thursday, July 7th we were off to Akron Children’s Hospital emergency room figuring it was just a bladder infection or something to do with her urination or lack thereof. We did the blood and urine tests again and also X-rays. The blood work showed similar counts as before, but they suspected the urine wasn’t quite right. The x-ray showed an enlarged liver. Next we had an ultrasound done and Karrie did great watching a Barney video the whole time. The head radiologist was called in to look at the results and Mommy knew something was not right. Daddy was then called in and we were told those words we will never forget, “Karrie has a tumor above her liver and it is cancer.” A CAT scan, more x-rays, phone calls, a visit from Oncologist, Dr. Patton, & admission to the Hematology/Oncology floor followed.
On Friday, July 8th a biopsy of the tumor and bone marrow were done. On Saturday, July 9th, chest and skeletal x-rays were done. And our waiting for the diagnosis continued through the weekend. Preliminary results of the bone marrow biopsy showed no signs of cancer cells. Tuesday, July 12th a Bone Scan was performed which lasted several hours.
On Tuesday, July 12th, 2005 Karrie was diagnosed with Stage IV Neuroblastoma. Please read the “My Cancer” tab to better understand this. Her prognosis for survival is about 30% and they could only give us hope of seeing her to age five, but not age 10. She would lose her hair, have possible organ damage, and be sick from all the chemotherapy. The treatment includes six rounds of chemotherapy, resection surgery, stem cell harvest, high dose chemotherapy with stem cell transplant, radiation, and an oral drug. Once that is all completed the next two years will be critical. If the cancer does not return during that two-year period than each day thereafter would decrease the chances of it coming back. However, she will be more susceptible to other cancers in the future.
On Wednesday, July 13th Karrie had her central line (tubies as she calls it) put in her chest. This will eliminate most of the poking for blood work that she has already endured, plus it will be the channel from which her chemotherapy medicine and others will be administed. She also had a hearing test done that day, which turned out within normal levels.
From the day we went to the ER, through two surgeries and her first cycle of chemotherapy, Karrie was not well and often in pain. She slept a lot, was constipated, became very stressed with visitors, and only wanted Mommy. But she also came around at times to eat and visit some. We experienced a hopeful evening on Friday, July 15th when for several hours Karrie acted like her old self: laughing, talking, eating, and “journaling” like Mommy.
Karrie also began her first cycle of chemotherapy on July 15th. It would last for 72 hours ending around 5:00 pm on Monday, July 18th. We were discharged that evening and headed home after 12 days in the hospital. Our three days at home were trying. Karrie did not eat or drink much. She was weak and watched a lot of videos. We had to give her Neupagen shots in her thigh to help her white blood cells grow.
We had an appointment at Akron Children’s on Thursday, July 21st for nuclear medicine for a scan the next day and a colon x-ray. She also received IV fluids since she had not taken fluids or eaten much in days. She looked much better. Her diagnosis from the colon x-ray was FOP – full of poop. WOW – that was one term that actually made sense. She did well at home that night with fluids and tried to eat, but threw up that night. The next day, Friday the 22nd we returned to Akron Children’s for the MIGB scan that would show all the areas of neuroblastoma cells in Karrie’s body. Karrie had thrown up again that morning at home and they started her on the IV fluids again. She had lost about 5 pounds since we arrived on July 7th (33 to 28). We were then admitted that evening in order to get her hydrated, eating, and pooping again. Her counts were low as expected since it had been 7 days since the chemo began.
On July 25th a nutrition IV with vitamins, minerals, proteins, fats, etc was started since she still had not improved. She had up and down days with improved eating, some vomiting, lots of painting, playing with doll babies, videos, and an occasional wagon ride, even outside for the first time on July 30th. However that night Karrie ran 102F fever and they started her on antibiotics immediately and waited for blood test results. She had strep throat. With pain meds she eventually had relief from the throat pain and began feeling better and was busier.
We thought we would be staying through to the 2nd chemo cycle (to start Friday 8/5), which is quite common for many children. However, on Wednesday, August 3rd after a 13-day stay, they surprised us with a GO HOME OK and her second cycle would not start until Monday, August 8th.
Our five days turned into nine days with insurance getting involved because Children’s is not a registered bone marrow transplant facility. We were told we would have to transfer to Rainbow Babies & Children for the insurance to pay anything. After meetings with PRC (employer), our family, Dr. Hord and Dr. Patton (Akron Children’s Oncologists), and Dr. Wiersma and Vicki Fisher (Rainbow B & C) and much prayer, we decided to go to Rainbow for Chemo cycle 2 and the stem cell harvest. Our insurance would then let us return to Children’s for anything that was not transplant related which is Cycles 3,4,5 & 6 and hopefully the resection surgery.
On Friday, August 12th we started Chemo cycle 2 at Rainbow Babies & Children in Cleveland. For Karrie’s health it was mostly uneventful accept for throwing up after taking medications or vitamins. Our experience was nothing like Children’s and we struggled a lot with many issues from food service to the differences in how each hospital does things.
The concern of Karrie not eating or drinking enough on her own led Dr. Wiersma to suggest the insertion of a nasal gastric feeding tube. She would receive almost all of what she needed so any regular eating or drinking would be a bonus. Chemo ended on Monday, August 15th and Karrie endured once again another invasive procedure to put the feeding tube down her nose. To Karries credit the nurses were often amazed from day one of how well she (a three year old) did for each procedure. We stayed an additional 3 days and despite throwing up we came home on Thursday, August 18th. Karrie was very active that day and evening and then experienced leg pain the next day. Karrie’s counts came down over the weekend as expected, but she continued to be active as much as she could.
By Sunday, August 21st she was not so well. She began a slight fever and it began to rise over several hours. We found ourselves packing up and heading due North to Rainbow B & C two days early and missing Steven’s first day of Kindergarten. She ended up needing a transfusion of hemoglobin and later platelets. Her counts were low for several days, but finally began to climb again.
The catheter for the stem cell harvest was placed on Thursday, August 25th in the evening and the harvest began on Friday, August 26th in the morning. It lasted three hours and she ended up collecting 40 million stem cells per kilogram of weight, even though we only needed 10 million (5 for the transplant and additional for after radiation and any reoccurrence of the cancer).
We were released once again to go home on Saturday, August 27th. IT HAS BEEN AN AWESOME WEEK! PRAISE GOD! Karrie has been active with little or no pain, sleeping most nights, eating and drinking a fair amount, doing well with her tube feedings at night, and seeming like her old self, including her three year old tantrums. She also put back on 3 more pounds and you can tell she looks a lot healthier. We enjoyed church on Sunday, August 28th and a Fun Fest in the afternoon, had high counts back at Children’s on 8/30, endured Steven running a fever and now a cough, visited with Grandma and Grandpas, played outside, rode her tricycle and played some ball. Labor Day was spent at a family picnic and she thoroughly enjoyed her day with her cousins swinging, jumping on the trampoline (with help from Aunt Holly and Cousin Ashley), and playing baby dolls. She is talkative, curious, busy and fun again!!! It will be hard to put her back in the hospital for more Chemotherapy on Wednesday, August 7th, but we must stick with plan in order to ensure her complete cure be it God’s will.
Her 3rd round of Chemotherapy is scheduled for Wednesday, August 7th at Akron Children’s Hospital. This round is different from the last two and the one drug is extremely bad with side effects of increased vomiting and possible organ damage.
We thank each of you for praying and we want you to know we have felt every one of them! Please continue to pray and know we appreciate each of you so much! The thank yous have not been going out very quickly, so let us take this opportunity to thank all of you for all you’ve done and given. We are overwhelmed and grateful for all the gifts, meals, help and prayers. We could not make it through this trial without our awesome God and each of you!