6-1-06 Thursday Karrie is doing well and we are anticipating the normalcy of life to return soon. She continues to be active, growing hair, and talking up a storm. She loves to pretend about anything from tea parties to going to school. And her brother, Steven, has been her best playmate. She is mastering potty training quite well! Not buying diapers is a wonderful thing! We have survived two Sundays back to her Sunday school class. She loves playing with her friend Hannah there!
We have made it through her second course of Vitamin A and the third course starts next Tuesday. We also received word that Karrie's bone marrow was also clear which we were all sure it would be since it never has shown any disease. Our visit to the clinic was all good! She gained another pound - now a healthy 34.6!!!! Her feed at night has been reduced from two cans to one can and we hope to finish the last 18 cans the night of June 16th. If her weight remains the same or increases we can then pull her tube. We cannot wait to have our baby's whole face back!!!!! We are also anticipating her central line removal the end of the month. Her next appt to the clinic will be June 20th (Happy Birthday, Mark!) and if all goes well, she will be allowed to get her tubies out that week or the next. We are working to get that scheduled with her wonderful surgeon, Dr McCollum, from Akron Children's Hospital. The end to these tubes will be the start for us at putting this past year behind us. We pray that God will keep Karrie clear so we do not have to revisit this chapter of our lives again. Karrie is dealing with a runny nose. Her counts were great again (WBC 8.7, Hgb 10.7, and Plt 201), and we questioned with her white count so high if she wasn't fighting an infection. So maybe she is! We filled out and turned in her preschool papers for next September. God willing in August she will be given the ok to go.
Steven is doing great again! He is enjoying t-ball and had some great hits and throws. He completed his last day of kindergarten today! Wow - where has the last year gone! Steven had some sad moments today realizing he wouldn't get to see his friends every day. The spring allergies have not bothered him much for the past couple weeks. The CT results were positive for acute pan-sinusitis, which means his sinuses were full of fluid. He will be on antibiotics for about three weeks and then rechecked. The doctor had three dozen positive CT scans the past several weeks and was not surprised to at the findings. Oh, and Steven was promoted to first grade! Now we just need to get him reading all summer long!
On Sunday we headed to Taylor's for a cookout evening with the Degenhard's! We had a wonderful time visiting, sharing, and laughing with Tricia, Jarrod, Rocco, Trent, and Taylor. Taylor is doing well and will hopefully gain some muscle and weight soon. She did not know Karrie since she'd grown hair. But once she talked to her daddy about it, she realized who Karrie was and then they played together. So good to see! It was truly a wonderful evening, especially since we were meeting outside of the hospital!!! We enjoyed a family bike ride on Memorial day. Mark and I weren't so sure how much fun it would be with the heat of the day at 11am. But the kids made it all worth it when they shared with each other their anticipated excitement for the ride. Once we got riding Karrie said "This is so fun! I love this!" And Steven rode the tag-a-long behind Mark and may have done the majority of the pedaling - ha! ha! He loved it! We are hoping to take in an evening at the Cleveland zoo tomorrow. The zoo will be closed to the public for a special night for oncology patients. We are looking forward to seeing all the animals and enjoying more family time, memory making, and visiting with other NB/cancer friends!!!!
We apologize for the promised photos for the past month that have not materialized. The e-mail method is not an option yet and the web site is being redone thanks to Karrie's Aunt Cindy. She will be adding more photos from transplant days and then the post transplant ones, too. Karrie has changed so much. It is amazing! Aunt Cindy has also set up a "Where do we go from here?" section that I will do an update maybe once a month with pictures. Our clinic visits are going to once a month so we will have medical info to report then. And although I could write many pages about Karrie, and Steven, too, and I have so many photos I could share, we have to limit it to the space we actually have on the web site. This will be the last update put in the "Progress Report" section. We hope to continue to keep you updated because we need your prayers everyday!!! Cancer doesn't play fair and this one is no exception. We hope, pray, and believe that God has healed Karrie. But we also know that Karrie and this past year have been examples of the power of prayer and how God listens when His people pray. And we are grateful beyond words! Please keep praying!
A quick prayer praise for Amy's cousin, Heidi (Miller) Rennecker, who had the ventilator removed, breathed on her own, was moved to a regular room at the hospital and then was moved to a nursing home where rehabilitation will start. Thank you for all the prayers for Heidi and her family. Please continue to pray as she continues recovery and they struggle through life changes.
Karrie's final comment for the day - "It's NOT fun going to bed!" as she walked hand in hand downstairs to the basement to cleanup with Steven!
JUST WANTED TO LET EVERYONE KNOW THAT KARRIE'S SCANS CAME BACK CLEAR - NO TUMOR, NO CANCER, PRAISE GOD!!! THANK YOU FOR PRAYING FOR HER AND US. WE WILL HAVE THE NEXT ROUND OF SCANS IN AUGUST. PLAN IS STILL TO REMOVE THE CENTRAL LINE AND FEEDING TUBE END OF JUNE. KARRIE'S WEIGHT STAYED THE SAME WITH ONE LESS CAN WHICH NURSE VICKI WAS HAPPY WITH. SHE WOULD LIKE TO SEE HER GAIN A LITTLE MORE. SEVERAL OF THE 100 DAY NO-NOS HAVE BEEN LIFTED INCLUDING BEING AROUND KIDS LIKE IN SUNDAY SCHOOL. SO WE HOPE TO ENJOY THAT AGAIN SOON. KARRIE IS DOING WELL. HER BACK IS A LITTLE SORE FROM THE BONE MARROW ASPIRATION AND SHE HAS HAD SOME LEG & TIPPY TOE ISSUES AGAIN. THE FIRST WEEK OF THE SECOND COURSE OF VITAMIN A WAS OK WITH HER TAKING IT RATHER UNEVENTFULLY, BUT IT IS BECOMING MORE AND MORE OF A CHALLENGE AND FRUSTRATION, EVEN THOUGH EVENTUALLY SHE GETS IT IN. PLEASE PRAY FOR THAT WHOLE ORDEAL. WE HAVE ANOTHER WEEK OF IT! AND WHAT BETTER WEEK TO HAVE RAIN SO SHE DOESN'T GET BURNED BY SUN EXPOSURE. SPEAKING OF SUNSHINE, IT IS PEAKING THROUGH. TIME TO GET OUT THE FARM EQUIPMENT TO MOW THE FIELD - HA! HA! HAY ANYONE?
STEVEN IS DOING OK, BUT WE ARE TRYING TO SORT OUT THE CHRONIC SINUSITIS VS ALLERGIES. HE WILL HAVE A CAT SCAN ON FRIDAY OF HIS SINUSES. IF IT IS SINUSITIS THEN HE WILL BE ON ANTIBIOTICS FOR 3 TO 4 WEEKS AND A STEROID AT THE END. IF HIS SINUSES ARE CLEAR HE WILL NEED TO DO ALLERGY TESTING. PRAY FOR STEVEN AND US FOR THIS CONCERN. THANKS AGAIN!
5-4-06 Thursday Hopefully, many of you were operating on the "no news is good news" thought in the absence of the updates. Life gets busy at times and sleep and fun come before late night computer time. And then when I was hoping to send a short update with photos included, the computer decided not to work. Minor issue was solved and surprisingly I have an afternoon to do an update. Not too sure about the pictures though. They may come on the next update when I figure out how to do it. We are having trouble with the web site and adding photos there, so maybe I can provide a few this way. We will see!?!
As for our beautiful little girl, Karrie is doing so very well!!!! We hesitate to get too excited since we are only a week from a 100 days post transplant and hope not to head north for a hospital stay any time soon. (Never again would be ok, too!) Karrie is very active running, hopping, skipping, and full of energy. She has had NO leg pain for at least two weeks and she completed physical therapy this week. Her hair continues to grow and is the same dark color as before. We don't think there will be curls, but we will wait and see for sure. We are amazed and thankful that she is only two months from her fourth birthday - a year since this all started. Karrie has gained back her weight which is now a healthy 33.6 pounds. This is a little above the 50th percentile for a four year old girl. She is eating better and better with breakfast now included in her meals. Just since Tuesday night we have cut the night feeds down by a half can and will hopefully do another half can by next week if her weight remains good. She has grown taller and stretched out. We have been given the ok for fresh fruits and vegies, deli meats and cheeses, salads, and homes done with their wood burning. (Karrie is so happy to eat regular cheese, grapes, and pears!!!) She needs to stay away from foods that sit out like at salad bars and fast food restaurants. There will be no dirt digging or sandbox fun yet though. She continues with riding her tricycle, singing and dancing (even in the hospital hallway), and sidewalk chalk fun. Steven and her were quiet outside yesterday and I found them on the front sidewalk drawing. How cute they looked! With her increased activity and speed she had several bang-ups last week. Brother and her crashed with their bikes in the basement and then right after that recovery she fell flat on her face on the basement cement floor. Can you say goose egg? It looked awful, but it has healed nicely. Thank goodness for normal platelets for this time of increased boo boos! Her counts remain great - WCB 4.6, Hgb 10.2, and platelets 230!!!!!!!!!! Amazing! Thank you, God! Karrie loves to go places and help do the shopping! Karrie's attitude problems are bearable. She stomps off to sit on the bottom step when she gets upset with someone. Then she comes back to tell us she was or still is angry. A girl that knows her emotions. She started saying "Cheeeeez" for the camera again!! It's been a long time! She loves to color, be read to, and play babies, trains, and balls. Several times a day you will find her doing something imaginative and creative with paper, envelopes, stickers, writing, etc. Karrie enjoyed playing with her cousins at Grandma Richard's birthday party last week. She even talked to Uncle Jimmy about the sticker fun they had at the hospital.
We are getting good nights rest for the most part! Six hours at a time cannot be beat! And we are not up because Karrie is awake or crying. She sleeps about ten hours. We will hopefully be done with the night feed within the next two months and remove her feeding tube. I was blessed with some morning snuggle time with Karrie on my birthday last month and without being coaxed she looked at me and said, "Happy Birthday!" before anyone else got to. We still have not ventured out to a restaurant, but did have our late lunch in the Atrium/Cafeteria at the hospital on Tuesday. It was a bit nerve-racking, but we did ok. And no sickness here despite a hotdog that was not hot or germ free for that matter. We are encouraging Karrie to regain some independence with getting dressed and such. We hope to improve her potty training efforts and get back to where we left off last July.
Steven kept his illness to himself this time around. He had a sinus infection a few weeks back, as well as his allergies getting to him. His eyes can get so red and itchy. We did the doctor visit again and he is on quite a bit of medicine, but it doesn't drag him down any. He started t-ball last week and seems to love it and do well. It is a hoot to watch! His first game will be next Wednesday! He is counting the days of school left and he tells me every couple days how many. It just hit me yesterday that my little boy is almost done with kindergarten. Wow!! This year sure flew by fast!! Steven learned the Johnny Appleseed prayer back in preschool and now sings it with "for giving me the things I need: the sun and the bike and the t-ball...." How neat! He's really good to his little sister most the time, but still is always itching to go play with someone else. He got use to constantly going somewhere to play with other kids (or grandpa!)
We will be starting the Vitamin A again on Monday or Tuesday next week. We hope it will go well. The last dose of the first course went really well. Karrie held the spoon and took bites all on her own!!! We can only hope she will pick up where she left off! Our next visit to Cleveland will be for her scans on May 16th. Cleveland uses the PET scan and CAT scan instead of the MIBG. Karrie will be sedated for them and Nurse Vicki will also take a bone marrow aspiration to check her cellular status. Her feeding tube will also be changed since we don't expect to take it out quite yet. We did discuss the hearing test with Nurse Vicki and she said the hearing loss is basically unchanged from the January test. She also told us that Karrie would likely be able to go to preschool in the fall. We were surprised knowing she could not be immunized until at least next January or February. They doctor would write an excuse for her to be able to go And the next round of scans and tests would be in August so they could be sure if her body was ready or not. However, that age is likely to catch more things. Much to ponder there, since we had thought it was not a possibility. Karrie will remain on about six medicines, but we'll wean a few within the next couple months. Karrie had her heart tests done also on Tuesday and all went well. So far we think that everything is fine, but we'll wait for the final word.
We do appreciate your prayers for Karrie and we are thankful for each and every prayer lifted to our Heavenly Father! She continues to be a living example of the power of prayer and we can only hope that continues for many many years ahead. Thank you also for remembering Steven, Mark and I in your prayers. We continue to feel those prayers being answered! Specifically, we ask for God's hand on Karrie and us for the upcoming Vitamin A course, PET and CAT scans, and the results which we ask to be clear and clean!!!! We also ask for continued prayers for the Degenhard family and Taylor who is finishing her second week of radiation and doing well. We hope to get together with them this month so the girls can play. They have not played together since at least December, but Karrie prays for her every night and pretends she comes for tea parties and picnics. An additional prayer concern we would like put before our Heavenly Father is one for my cousin, Heidi (Miller) Rennecker, and her family. She was in a bad accident last weekend and has a very long road of recovery ahead of her with broken legs, pelvis, arm, etc. Please keep them in prayer for their every need and that God brings Heidi healing and all of them peace, comfort, and strength. Heidi's daughter, Hannah was also in the accident, but is out of the hospital and back to school.
In my devotional time today I found encouragement in Romans 4:20 about Abraham's justification by faith: "Yet he did not waver through unbelief regarding the promise of God, but was strengthened in his faith and gave God the glory." May our faith remain strong and may we continue to give God the glory in every moment of our lives!!!
KARRIE'S FUNNY: On the ride home from Wal-mart the van windows were open to cool off the hot van. Karrie said, "Mommy, could you close that (pointing at the window) because I just got a shower and it's messing up my hair!" (Gotta love her!!!!)
4-19-06 Wednesday Another week under our belt post transplant and Karrie is continuing to be more like her old self. The leg pain continues to be less often and her hair is growing and growing! Our days are busy and here are the highlights from the week:
*Karrie had her backpack, purse, and hair stuff Thursday morning and she said "I did my hair." *Karrie cried and fought the vitamin A from Thursday to Tuesday. We had to hold her still and pry open her mouth. Chocolate pudding never tasted so good -not. We were not happy with this and to do this another week was not the answer! Mark started praying for a better way. His prayers were answered. As of Tuesday night Karrie took the vitamin A without a problem - opening her own mouth for the spoonful. She has since asked for pink and purple jelly beans and banana pudding to be her rewards. And she deserves it for that change!!! (Thank you, God!) *Karrie was a big helper on Thursday! Mommy and her cleaned a bathroom and she made it more enjoyable than I ever thought possible! *Karrie is outside playing mostly in the garage most every day since it has been nice. We do venture to the swing and slide. Her other favorite thing to do is sidewalk chalk. We had our front sidewalk completely covered after a week of chalk time and little rain! *Karrie and Steven are the typical siblings with excitement to play and playing great together. Then in a short time they are not so nice to each other. Will Mommy ever live through this! *Karrie and Steven got to help make bunny cookies for the egg hunt lunch. They were the easiest cookies I've ever made. They were little circles of dough with a bunny in the middle and the kids just laid them on cookie sheets and I baked them. (Thanks G.I.F.T. class!!!) *Karrie did have a couple days of leg pain, but most days have been with less than one or two incidences. *Karrie and Steven are stuck on a Scooby Doo DVD with Tom & Jerry video coming in a close second. *Karrie has always seemed to sleep with her head at the top and feet at the bottom of the bed. Well on Friday we saw a strange sight. She had her feet on her pillow and her head at the other end and pushed up against her bed gate. And this position changed to several others within an hour. *Karrie got mad at Grandma Dodez last Friday when they were looking at her mini album and Grandma told her that her name was Karrie Rebecca Dodez. She told Grandma that her name was Karrie and not all three names. *Karrie enjoyed her cousins coming to play and do the egg hunt outside on Friday. *Karrie also loved her time with Aunt Laurie last weekend. She helped Karrie start trying t-ball and she did pretty good swinging left-handed. *Karrie had a good time with Steven, too. She rode and drove the jeep (with a little help from Steven or Mommy.) *Karrie cried upon waking from her nap for 30 minutes for Mommy who went to town on Saturday. Daddy tried everything, but nothing would do. Karrie was better once Mommy came up to get her out of bed. UGH! Daddy was spent! *Karrie ate a whole piece of cheese pizza (minus the crust). She loves watermelon and even red beets. Her eating has improved little by little in the last week! *Karrie got Hi Ho Cherry O game from the Easter Bunny and Steven got the Candy Land video. Both were happy! Funny how long it took Steven to even notice there was a basket on the table at his place. He'd been up watching tv for an hour or so and didn't notice it until after he started making pancakes with Mommy. He asked "How did this get here?" *Karrie went to church with us wearing her mask. She just looked around for a while at first and then "wrote" in her notebook before folding paper for an envelope (a little noisey). We walked upfront during invitation to share our praises for having her there with us again after three months. She was full of hugs for Mommy, kisses through her mask, and waves to her cousins and aunt! How wonderful for her to make her appearance back at church where so many pray for her on the same day we celebrate our risen Lord and Savior, Jesus Christ! From death to life for both of them! *Karrie took notice of the piano being played when we were upfront. She loves music!
Clinic visit and hearing test - Tuesday: *Weight increased slightly - almost a pound in two weeks. That's better than losing. Continue on night feeds. *Hearing test: Karrie does still have the moderate high frequency hearing loss and the one test showed ear damage to support that. We were bummed! Then we looked at her last test which was prior to the high dose chemo (carboplatin) and we believe that it was the same amount of hearing loss (in other words - unchanged). Nurse Vicki said that is good because she would have expected more loss after the carbo. The chemo Cisplatin must have done the damage in earlier chemo treatments. So we praise God that it is not any worse! We will wait at least until the six month hearing test before getting hearing aids, since we don't notice a huge problem with her hearing at home. *The Vitamin A does not have a cumulative effect so each course of treatment will not necessarily be worse and worse on her. So far we made it about five or six days before we saw side effects: rosey and chapped cheeks, dry and cracked lips, and some other complaints here and there. *We can continue to go shopping at non-busy times. Karrie is allowed to got to Steven's t-ball games, but don't sit with the crowd. Karrie is allowed to go eat at a restaurant just don't get the table everyone walks by. Karrie is also allowed fast food drive thru's like McD's, but no playlands. *Counts were great!!!!! WBC 5 and Hemoglobin 10 - unchanged. Platelets are in normal range 152!!!!!!!! Praise God! *Karrie enjoyed lots of attention from nurses, Dr W, physical therapists and music therapists! She did the hopscotch with sounds and then the drums and keyboard!
Funny sayings from Karrie: "I sound funny when I hiccup and sing at the same time." "Tickle me!" (Love those giggles! And to tell us to touch her tummy is a great improvement!) Both kids got all excited about going back outside to play and they were rushing to get ready and Karrie says, "What are we going to do out there?" Steven knew and told her.
Well that's all from our corner of the world. We greatly appreciate your continued prayers and encouragement! Things seem to look great and we are grateful! We continue to seek complete healing, but not knowing for sure is a constant evil looking at us. God is good and He will continue to see us through!!!!
"All things work together for the good of those who love Him and are called according to His purpose." Romans 8:28 4-13-06 Thursday It is late again, but I am so glad to report some good things happening. Since the last update and asking for prayer for several things, I am happy to report that God is listening and answering much to our delight! Thank you prayer warriors and thank you God!!! Since it is late I am opting for a highlighted version - so here goes it:
*Morning after last update finally a BM in the potty! Yeah! Good job, Karrie! *Wal-mart shopping went great! Karrie was so excited to go to a big store and to go in! She was in search of peas the whole time and it was one of the last things we got - frozen section! *She had her mask on and at certain points I took it off, but she wanted it back on. So she didn't have it off much and even enjoyed a sucker. No illness from the outing!!! PRAISE GOD! *Mommy found at Wal-mart a big hat to cover her from the sun and she put it on and took it off just as quick and said let's get it! *Our days always include riding her tricycle, music, and some crafty moment at her picnic table. *Good to have moments (swing, slide, running, laughing, etc.) that reminded us of how she was last summer before the cancer! *She still wants Mommy only all too often. This is a sore spot for Daddy! (Mommy, too!) *Karrie is sitting up and standing up on her own when she wakes up in the morning, but still needs her leg rubbed though. *She likes that her hair is just like Grandpa's - fuzzy stubbles! *Last week not eating very much and we were getting concerned! *Fingernails peeling off from new nails growing. Need for band-aids on them. Cried anytime she had to wash her hands and always needed new band-aids put on them. *Last week she had short naps and was crying after waking from them. *Mommy and Daddy enjoyed 4 to 5 hour spans of sleep time at night!!!!! (Forgot what that was like!!) PRAISE GOD! *Shared with Steven in his finds at the church egg hunt. Thanks Big Brother! *Practiced taking her pretend medicine with chocolate syrup - Yum! *Second outing - to Buehler's for her Rx - Vitamin A/Accutane/Cis-Retinoic Acid. Karrie "drove" the green truck cart and we went up and down many aisle back in the toys and hardware while waiting for another Rx to be filled. *Enjoying the weather and outside time so we had late naps and a harder time sleeping somewhat. *Started the Vitamin A/Accutane/Cis-Retinoic Acid on Monday evening, and Karrie chose to take it with strawberry syrup. Yum! That went well - much easier than we expected! Tuesday morning was a little tougher with Daddy gone to work, but chocolate pudding went ok, too, after an almost gag! As of tonight we have five doses down and 23 more to go for this round! And then five more rounds of 28 doses over the next 5-6 months. We should be done in October. *Weight check here on the home scale seems to show she has not lost any more weight. Talk to nurse Vicki over the phone on Tuesday. No clinic visit this week. All seems good. *Stayed in pjs until almost 3pm on Tuesday and then lathered in sunscreen and outside to play - tricycle, sidewalk chalk, swing, slide, and run! Mommy nervous when Karrie was in the sun - big t-shirt, but not completely covered the first 10 minutes. No problems developed and she got a jacket on when she got cool doing sidewalk chalk in the shade. *Karrie helped Daddy "drive" the truck into the garage Tuesday evening. What a picture forever engraved in my memory! *She does complain that the medicine hurts her lips and going down. So far she takes it well after a bit of sadness and a little fight and hasn't had any noticeable side effects yet. *Mommy and Daddy struggle with when she cries she gets her way because we feel bad for her and want her to have things easy! *A FIRST!!!!!!!! Karrie did not cry at all from Tuesday bedtime to Wednesday morning!!!!!!!!!!!!!!!!!!!! It has been so long since we had a completely quiet night! PRAISE GOD FOR ANSWERING OUR PRAYERS! *A FIRST!!!!!! Karrie got out of bed this morning on her own, turned off her fan and monitor, and walked over to Mommy in another room!!!!!!!!!!!!!!!!!!!!!!!!!!!!! WOW! Karrie has not gotten out of bed on her, Karrie has not cried first when waking, Karrie has not walked over to another room - IN MANY MANY MONTHS!!!!! We think it has been at least 10 months!!!!! PRAISE GOD! *Another trip to Buehlers this morning and she enjoyed "driving" the green truck cart and added her own motor sounds!!!! Cute! *Karrie seems to be eating better - PRAISE GOD! We hope this continues, but don't know with the medicine's effects setting in soon. *We colored Easter eggs today and will be having an egg hunt here at home with her cousins and brother on Friday!!!!
So that's our week! And we are grateful for the answers to prayer for sleep for all of us and less leg pain for Karrie!!!!!!!!! We will go back to the clinic on Tuesday the 18th to see how her weight is. That day will also include a hearing test. Please pray for her hearing to be normal again. We don't think she is as bad as she was. Her tests for her heart will be May 2nd and then her 100 day scans will be on May 16th. Please pray for us as we prepare for those. May God allow Karrie to have good reports on everything!!!!!!! We thank you for your continued prayers and support! We'd love to hear from you and how your families are doing also! We've heard that Taylor is still doing great and will not start radiation for a while yet to give her liver a chance to rest. They are radiating four areas so please continue to pray for Taylor, Tricia, Jarrod, Trent, and Rocco! We are grateful for each of you! Have a wonderful Easter and Praise God for His Son and His Sacrifice!!!!!
Good Friday Service Invitation: Please come anyone and everyone because you are someone to Jesus and to us!!! April 14th from 7 to 8 pm at Orrville Christian Church A time of worship and hear the words of the Men of the Cross, a dramatic presentation of the crucifixion of Jesus. We look forward to seeing you there!!!! Let me know if you have any questions or want us to look for you!!!!!
"Be joyful in hope, patient in affliction, faithful in prayer." Romans 12:12
4-5-06 Wednesday Another week has gone by and we are still battling from the home front, thankfully! Karrie is still doing well overall and she continues to challenge us one minute and melt us the next. We are constantly on a roller coaster of emotions with a three year old pulling our strings in many different ways. But then again, I think that is somewhat normal for her age. We will take normal.
Our nights are full of much broken sleep with Karrie crying out still mainly from leg pain, but sometimes a bad dream or something. We continue physical therapy and doing things to help with the pain, but it is so sporadic. Several mornings she began sitting up on her own and getting out of bed on her own, but she would cry in pain and return to the bed for a minute or two. This morning she cried, I rubbed her legs and did her exercises and she got up without any concern of pain. But then, after nap today she cried and cried and cried with pain, but then wanted her shoes on and walked down the stairs easily. Probably so many variables effecting her including the chemo effects, growth, increased activity, and muscle use, that we may never have a specific remedy to fix it right now. Just something to work through.
Last week was spring break for Steven and it was wonderful to have him around all day!! He and Karrie played together a lot. Two mornings Karrie woke crying for Steven and once she got up and going they walked hand in hand over to his room to play hot wheel cars or trains! One of those same mornings she cried for him and he was downstairs watching a video, Lassie. He stopped the video and came up to be with her. He really wanted to go back down to finish watching the movie since it was at the good part where they were about to find Lassie. Karrie really wanted to go to his room to play cars with him. Steven tried several times to lovingly convince her that they should go downstairs to finish the movie. But each time he would sweetly say that even though he would rather watch the movie, he knew she wanted him to play cars with her. And so...they walked together to his room to play cars for a little while and then downstairs to finish the movie. What a great big brother! He sure does try to please her and help when he can!
Steven also had a proud time this last week when he began to ride his bike without the training wheels. He has been saying for a year that he wanted to wait until he was six and now it had changed to seven. Mark even took them off last summer or fall and he wouldn't ride it. This time Grandpa Richard took them off and Steven wasn't too happy. He wouldn't ride the bike. He was given the ultimatum - No bike, No jeep. So later that evening he tried out the bike, very slowly at first. He finally got his confidence back and was flying around in no time wanting to tell and show everyone!!!! The funniest part is - those training wheels were on, but he rarely used them. They didn't touch the ground very often. He was so afraid of falling and had to learn to put his feet down and rely on himself and not those wheels. He's so happy to be able to ride a "two wheeler" now!!!!
We also enjoyed several more nice days outside. Karrie was busy on her tricycle or blowing bubbles. For inside play she got Steven and Grandpa Richard to play baby dolls on different days. Lately, she has been playing music a lot!!! Her Children's music is quite catchy and you find yourself singing it the rest of the day! She's enjoying finger painting, too. Love that Color Wonder paper and paints! No Mess! Karrie watched a color video one day and they were mixing colors to make other colors. She told us what colors made what color and then said, "Barney taught me that!" How funny! Karrie continues to eat at mealtimes, but most days not very much. She did have a good supper the other night where she had three helpings of spaghetti. Yum! But the next day, she hardly ate anything. Her favorites have been those Cheezit Grips (tiny cheese crackers), peas, and drinking milk. Her night feeds are going well and she tolerated the change to the "high test" stuff. She had a bout with some eye matter and redness, but that never got too bad and has mostly cleared up to be no concern to the doctor. The yucky runny nose comes and goes also. We are challenged by the potty training issues. She did so good with BMs for the past year, but now she's regressed somewhat. We hope to move forward in that area especially as the days get nicer.
We did our clinic visit Tuesday and found Karrie to have lost almost another pound (at 31.4). Some concern, but they hope that her Spag supper was the start of a turn around. Her counts were all very good: white 5.1, Hgb 10.2, and Plt 110. They came back up on their own!!! Praise God! The doctor and nurse are amazed at how well she is doing! (GO GOD!) Her hair stubbles are just beautiful!!!!!!!! They didn't remember her having dark hair. We talked about several things. Earliest the central line will come out would be the end of June. Despite our concern of the trauma to draw blood from her arm once a month, the nurse told us to weigh that against the possibility for infection from an open wound where the central line is in her. We were happy to move to every two weeks for Karrie's appointments to see the nurse and doctor. Our concern about her immune system led Nurse Vicki to tell us most transplant kids who receive their own cells have normal immune systems within six to nine months! The biggy is the plan to start the Vitamin A (Acutane) on the 66th day after transplant, which is Friday. Side effects are bad, but bearable. We hope! Her lips could get very bad - red, chapped, cracked, swollen, etc. Can you say Vaseline!!!!! If she is out in the sun unprotected she would blister in 15 minutes while on this drug. We will be lathering her in sunscreen every morning and then she will be wearing long sleeves and pants, and hats of course, for the duration of the summer. We were told she could swim with ample sunscreen on. The fun part to start will be getting this wonderful oily yucky drug into her. We will have to poke the pill and squeeze out the contents (since she will not swallow a pill) and spoon that into her covered up by some wonderful food that she likes. They suggested pudding, ice cream, or peanut butter. Other parents have found that chocolate syrup, maple syrup, and honey work well. This will be a challenge, I'm sure! And speaking of challenges, the red tape they have to go through to get this prescription for Karrie - a three year old. There is big concern about teenagers who use this drug for acne. If they become pregnant while on the drug they will likely have children with birth defects. So even though Karrie is a three year old - last I checked, incapable of becoming pregnant - we still have to have an ID card, consent form, etc. to get the Rx filled. Crazy! Poor Vicki! She has had a challenge doing all the extra work. She told people, "I have less trouble getting chemo that could kill a person." So long story short, we probably won't get the Vitamin A started on Friday. But most don't start on time because they are still waiting for their counts to start radiation first.
Well, that's all for now. Need to try to get some sleep because Karrie and I have our first big outing planned for tomorrow - a trip to Wal-mart early when it is not too busy. She may have to wear her mask some and we will have to wash down the cart, but hopefully we will have some fun! Pray she doesn't contract any illness from the outing! Please continue to pray for Karrie. The "less likely" and "rare" side effects from the vitamin A could be quite serious. We continue to ask for organ protection especially. The liver will be the concern with this one. We know the summer will be a long one with all the precautions to keep her from burning, not to mention her lips hurting and looking bad. Her weight, leg pain, and eating are the other concerns for now. We are very grateful for those of you that continue to lift our precious girl in prayer to our gracious heavenly Father!!!!! We covet your prayers for Steven and us, as well. Also Taylor is home and doing great. Please send prayers up for her and her family as well! We love you all!!!! We thank God for you everyday! 3-28-06 Tuesday Hello everyone! So good to be back to my late night updates - ha! ha! I will try not to make this too long since the nights are still not full of good sleep and we all need more than we are getting. I learned this week that sleep plays an important role in weight loss. However, I don't understand why Mark loses sleep and weight while I lose sleep and gain weight. God made each of us different and what He created is good! Now if we would just not mess it up! Ha! Ha!
Our past week has been mostly uneventful compared to the last eight months. It is nice not to expect a fever by a certain day or week. And also nice to not have scheduled hospital stays! We are at day 56 since transplant and over half way to day 100. We finished radiation a week ago and Karrie suffered only diahrea and nausea from the duration of it. No skin problems at the site where they radiated. Her weight from beginning of transplant stay has only gone down about two pounds, which is very good considering the vomiting and diahrea she has had fairly consistently. We did adjust her feed down several hundred mls to where she tolerated it better and kept it down almost the whole week. She usually only eats regular foods at lunch since her feed runs all night so she's not hungry for breakfast and the feed runs at naptime so she's not hungry for supper. She can be a typical three year old with her tantrums and attitude:-) It's is strange to see this since she has had little opportunity to feel normal and act normal for the last year. Her hair continues to grow! She now has some healthy stubbles that color her head dark. Her leg pain is still a problem. She goes to physical therapy once a week and has improved, but she continues to wake up hurting. We also had a three hour crying fit on Sunday when her leg hurt so bad. We believe it as from increased activity on the days prior. She does cry out in her sleep at night and naptime. We guess it is from her leg pain and sometimes needing covered up again. Karrie is quite busy playing and living life on the home front. It is amazing at all the things she does in a day: Candy Land, baby dolls, makes meals in her kitchen, reads to her babies, sings and dances to music, colors, paints, videos, writes in notebooks, wrestles with Daddy, bouncy balls, computer, cars, trains, pretends to go to school, doll house, cut and glue, doctor kit, help with laundry, etc, etc. She can run circles around me! Her short attention span wears me out. Steven and Karrie have their good and bad times - getting along so good one minute and then yelling at each other the next. They have had some precious conversations about Karrie getting better and how they love each other.
Karrie had some firsts this last week. She cleaned up her room before nap all one her own!!!!! She has never done this usually because she didn't want to and I always helped and sometimes Steven did. I was so proud of her!!!! She also got to "enjoy the fresh air" on Monday! She was so excited to go out that she was jumping up and down and her face was beaming! It had been over two months since she had been outside other than parking garages and in the van. She rode her tricycle and slid down the slide and even took two laps around the house in a race with Steven and Mommy. Another first was her eating supper tonight! With a change in the tube feeding schedule, she went without for nap and she was hungry for supper. Bet you cannot guess what she ate? Do you believe this - cooked broccoli with dip, crushed pineapple, and chocolate cake with chocolate frosting. Amazing! Can you say diahrea - hopefully she won't!
Well, our clinic visit today was very good! Karrie's counts are great! Praise God! Her white cells and platelets actually improved and her hemoglobin is holding around 10. No transfusions:-). She has not been given platelets since day 13 after transplant, nor hemoglobin since the beginning of March. However, please continue to donate blood because there are many kids and adults that need it to continue life.) Nurse Vicki said this shows that her cells have engrafted very well. Vicki was very encouraging saying Karrie "looks like a million bucks" and that many of her transplant patients haven't even started radiation by this point because of their cell counts. As I said earlier her feeds have been changed. She will receive them only at night with a lesser strength for a couple nights of the formula we were on before transplant (more calories). Hopefully, she will tolerate it and we will move to full strength by Friday night. Vicki hopes to move her to eating real food at the table and cut the feed more and more. Vicki wants to give her another full week to get the radiation effects completely out of her system before we start the next treatment which is the Vitamin A. So we will start that sometime next week. We got ok to go to church on Easter and thereafter, but still strict around crowds and especially kids. Ok to go to public places during the daytime when kids are in school and places are not as busy. We also looked ahead to day 100 and all that entails. She will be scanned and have several tests including CT, PET scan, EKG, Echo, kidney and hearing tests. They will not do the MIBG that is the NB cell scan. They like the PET scan better for that. The 100th day is also our day to choose to return to Akron or stay with Vicki and Dr W. Karrie can also have her NG tube removed if her eating is normal and she will take any meds she is still on orally. Her Broviac tubes can also be removed. However, there will still be blood draws done in her arm because the bigger amount is needed for chemistries. This could be traumatic for Karrie, so that will be a tough decision. The Emla cream can be used to numb the area and she would likely be only having blood drawn once a month by that point. Our visits to clinic will decrease more and more by that point also. Returning to Sunday school after the 100th day is also on the schedule!
Emotionally, this last week has been the toughest since we've returned home. I had a real battle last Saturday with doubt and Satan knocking me down. I was very depressed. Mark and I talked about it last evening and I realized what he has been dealing with all along. See he helped me understand that I have been on the frontline constantly and now I have time to reflect and think. The hardest part is that we had such intense treatment for eight months straight and now we feel like we are not fighting anymore. Don't get me wrong! Karrie is doing very well by all the standards. And we continually want to believe with all our hearts that all the prayers answered and miracles seen indicate that God has healed our little girl! But we are still human and doubt and the unknown is out there. Cancer does not play fair, nor does Satan. And we are still battling a high risk of return over the next two years. We know that God's will is best and that we must continue to trust Him no matter what. But having said all that, it is not at all easy to do. It is a daily battle. Many times a minute by minute battle to refocus and retrust and gain a positive, heavenly mindset! We want so much for Karrie and Steven that we cannot let anything stand in their way of a fully lived life be it God's will!!!!
As for our wonderful friends fighting this same beast, we are happy to report that Taylor will likely be going home on Friday:-) She is doing very well from the doctors standpoint. However, pray for some better rest for Tricia and Taylor as they've had some stressful nights will Taylor being quite unhappy. We were so lucky to enjoy a visit with the Degenhards on Sunday evening. Mark and I went to the hospital to see them and it was wonderful to catch up and support each other. Please continue to pray for this awesome family and the many others we have told you about!
Well that's all for now. We need your prayers every hour still. Thank you so much to everyone for everything. We can never tell you enough times how grateful we are for all the people God has used and continues to use to help us through this journey!!!! We love you!
And now a word from our little princess: "Emma (doll) uses the lion blankie for a pillow and her hair is growing back like me!" "Mommy, I love the fresh air!!!." "Steven, you are a really good brother. I love you." 3-19-06 Sunday Hello everyone! We are so excited to report that Karrie is proud to be growing some hair on her head, plus eyelashes and eyebrows!!! We noticed it last night at bath time and were quite surprised!!!! We were told it would be three months from her last chemo which would be at least another month. Well that good stem cell quantity with God's hand on it has continued to be the thing that we look at when the good things happen (ie. counts, no more transfusions, etc.) Praise God!!! The look on her face was so awesome, especially today when we told Grandma and Grandpa Dodez. How cute! We are also excited to be headed into our last two days of radiation and early morning trips to Cleveland everyday. (Ok, maybe not excited to be heading into them, but more so to be heading out of them!!!!) Wednesday will be quite the celebration when we get to sleep in!!!! And yes, 7am is sleeping in for us! Monday we will also check counts and Nurse Vicki believes that Karrie is done with transfusions and will hold her own. On Tuesday we will do physical therapy, which is a lot of fun with Betsy and her toys. Karrie still has leg pain - now in her left leg also at times, but she is doing better overall it seems. We have been battling the vomiting and diahrea though. We have noticed a pattern with the vomiting and too much feed for her system to handle. As for the diahrea, we don't have a handle on that at all. She had only improved slightly before the radiation started messing her up more. We have been told that will continue for maybe a week after radiation ends. However, we are very grateful to not have caught any of the stuff going around. Thank you for the prayers of protection for our health, as well as our travels!! God is good! Please continue those prayers!!! We could always use a little more sleep also! Steven doesn't agree with that statement, but he has been more willing to lay down the last couple days. His wrestle time with Mark right before seems to help. He loves that!!!! Steven did go to the doctor again this week with that cough. We are leaning toward a seasonal thing with him, since he's done this about every four to six weeks for years. His spring eye allergy has also started to flare up and he just loves those eye drops - NOT! Pray for him!!!
Please continue to pray for us!!!! We are not done with treatment, but hopefully the worst is behind us! We hope to keep Karrie out of the hospital, but we eventually will need to start getting her back to living life including going places, which in turn could lead to infections. We hope to make it to church as a family by Easter, but we will be last in and first out to avoid contact with anyone. Hopefully, the warm spring weather will come our way so we can play outside. We haven't done that since January 23rd. We will begin the oral medicine in the next two weeks. This is vitamin A which has been proven to change neuroblastoma cells into benign cells. Karrie will take it for two weeks and then have two weeks off and continue that for six to twelve months. The side effects are not fun, but we will pray her through it. We just hope we can get it in her. It is a gel pill and since she won't swallow it, we will likely poke it to get the stuff out and put it in some yummy food. However, she doesn't eat much food yet either. A challenge is ahead once again! We had spoke of a study that we were considering since this cancer doesn't play fair and her risk of it returning is very high. But with much prayer and counsel with friends and family, we are not likely to go through with it since she is doing so well and we cannot see putting her through something so toxic which means a lot more hospitalization. Do we go after something we cannot see with something that isn't proven yet? Or do we rest on our faith in an unseen God who has carried us through these past eight months and produced many, many visible miracles. Besides God has healed her anyway and we are grateful for all your prayers that have made that possible!!!!!
Also continue to pray for Taylor as she is now on Day 10 from transplant and has been battling some very high fevers, as well as diahrea, vomiting, dry skin, low counts, etc. However, as of Friday she had some counts - cell growth!!!!!! Praise God! She is another trooper and God's little miracle!!!!!! Continue to pray for Tricia and Jarrod as they face the continued unknown. We also heard that Megan is doing great!!!!! Praise God for that also!!! She is doing physical therapy and using a wheel chair. We heard also this last week that Sarah Mae was back at Rainbow with pneumonia and Dominique was battling low hemoglobin that transfusions were not helping. We also saw Betsy and Katelyn come for a clinic appt. Betsy said that Katelyn's leukemia has been found to be a rare kind and they had to increase her chemo. Please continue to uplift our friends and their families. May God sustain, heal, and strengthen!!!
To God be the glory for all the great things He has done!!!! "God works for the good of those who love Him and have been called according to His purpose." Romans 8:28
From the mouth of Karrie: "Mommy, we can go to Disney World to see the princesses while Daddy is at work." "Don't talk to me!" (Yes, she has an attitude when she gets upset!) "Emma (doll baby) needs her Bactrim and Conazole. I need to write down her medicines." "I have an appointment at 2!!! I have to go!!!" (in a rush!!!) "Mommy, I'm hungry, but I'll wait to eat at home." (our hour plus trips home from Cleveland) "I didn't throw up my Prevacid while playing Candy Land." 3-14-06 Monday Yes, we are still here. Thankfully, more here than in Cleveland, but we are there a little too much for my liking, especially for the early morning hours. I need to make this quick as I have been up too late already, but again feel the need to update you on Karrie and us. It is very hard for me to not do this in much more detail, but many of you might be relieved! And that's ok. More sleep and more time to come in days ahead!!!!
We are still heading up to University Hospitals between 5:30 and 6am every day for Karrie's radiation treatments at 7am. We are half way with six down and six to go!!! Karrie is still doing well! No fevers or sickness or anything other than the expected. Her diahrea only improved slightly before the radiation started to mess her up again the end of last week. There is a slight concern for dehydration since she is cut short on feeds since she has to be sedated for the radiation and then add to that diahrea. But we can thank God, that she really hasn't shown any sign of slowing down or being anything but a sweet three and a half year old with an attitude at times. Another issue of concern is her vomiting the last two evenings while taking one of her meds that she has to take orally rather than down the NG tube. More musous build up probably doesn't help that any. We will be talking to Nurse Vicki about that tomorrow. Her right leg/knee is the other concern. She seemed to improve some from one physical therapy appointment to the next last week, but tonight after nap she was screaming in pain and it was hard to get her walking. But then once she is up on it, she is moving very good, but usually on her tip toes. As for the rest of us, I will say again there is not enough time in a day - or night!!! Steven is doing well, although his cough is back every once in a while and he still gets quite upset about lying down for naps in the afternoon. He did get up at 5:30am last week twice, so nap was needed then. Speaking of sleep, I had better get some! God is giving us another day tomorrow and we need to make the most of it!!! Please continue to pray for the above as well as our freedom from all the sickness around us. Several of Karrie's cousins have had the fever going around. Pray for their health as well as our protection! Also please remember Taylor as she is in the midst of the tough part of the transplant - waiting on counts and battling fevers and just feeling awful! No positive blood cultures though - Praise God! Please pray for Tricia and Jarrod and family also! Our princesses are our miracles!!! Thank you all and good night!!!!!! 3-5-06 Sunday For those of you who are wondering about us after another week has past, we just want to let you know we are doing ok. We also wanted to get this out for those who will be updating Sunday morning friends and prayer warriors. To sum the week up in a short and sweet manner here are the main things. Karrie had a clinic visit on Tuesday and all her counts and labs look great!!!!!!! PRAISE GOD! We did not have to go again this week!!! On the home front we are still struggling through the nights with Karrie often crying out while asleep. A few times she may have been cold since she doesn't stay covered up, but other times we were not sure what was wrong. She always goes back to sleep. Then she wakes in the morning or after naps with terrible pain in her legs - knee area. We believe this is joint pain from the chemo. She takes a while to get going and does the tippy toes a lot, but has been able to move well and get her heels down once she's up and about. She will be starting physical therapy this week after radiation and around clinic visits. Steven's cough and cold are history!! PRAISE GOD AGAIN! It is so wonderful to have him well again!!!! He is still on an antibiotic for another couple days. This coming week Steven is Student of the Week in his AM kindergarten class and gets to be line leader every day!!! He's excited about that! It's been difficult finding time for him, since he is gone in the mornings, we all nap most days in the afternoon, and the evenings are short with supper, Karrie's needs, and bedtime early. He continues to believe he does not need a nap, but only one day out of the past six days has he not fallen asleep when he laid down for nap. Funny! Meds and feeds are fairly routine now, but staying home all the time (even though we'd just spent a month in the hospital) is starting to get to us. We have about two more months of this home time with Karrie not able to go much of anywhere so she is not exposed to anything. Karrie finally had her princess homecoming party last night complete with a Sleeping Beauty cake made by Grandma Richard. (She had been sick for two weeks and couldn't make a cake for Karrie.) Karrie and her cousin Lindsey were beautiful in their princess dresses!!! Hope to get photos on someday in the furture. We will be starting radiation on Monday, March 6th and running through Tuesday, March 21st (minus weekends). Please continue to keep us in your prayers as we embark on yet another phase of our journey (a very early morning phase). And Taylor did have her kidney test on Tuesday the 28th and they seem to be working ok. However, there was a delay in starting chemo and she did not start until the evening of March 2nd (Thursday). Tricia and the family were doing ok and we need to continue to pray for them as well. Taylor should be done with chemo on Monday evening and then receive her stem cells on Thursday. Thank you everyone for everything! Thank you God for continuing to amaze us with everyday miracles! Take care and God Bless! 2-26-06 Sunday We are very glad to be home after a four week stay at Rainbow. Amazing to me that God once again got Karrie to a healthy status! To think of all she endured in the last month, Karrie is quite the little trooper!!!! And our prayer warriors are still the best there is!!!! We continue to count our blessings and look forward to hearing from you.
Mark, Steven, and Mommy were able to catch a movie (Curious George) at Tower City on Sunday (19th) while Aunt Laurie and Grandma Dodez kept Karrie at the hospital. Steven was a bit under the weather with his cold and he seemed to only enjoy the movie a little bit. Karrie was a very different little girl from what Aunt Laurie witnessed two weeks before. She was happy to show Aunt Laurie and Grandma around the place, too! She did have a slight problem - two blowouts!!! It had been maybe five days since any movement. So that's what happens when the Immodium is stopped. Thank you nurse Nicole for handling the mess!!! Steven and Karrie got to see and talk to each other through the big glass window by the elevators. Steven played peek-a-boo behind a poster and Karrie smiled a lot!! Karrie went to bed early that night and unbelievably - Mommy did, too (10pm)!!! And it was an awesome night of sleep - 8 to 9 hours total!!!!
Monday (20th) morning went well and we were hopeful to head home! Karrie counted her journals and notepads, as well as Mommy's, and Karrie has one more journal and one more notepad then Mommy does. Smart cookie that little girl is!!! We enjoyed our nurses, painted nails, and sang with the pink microphone to the Bo Bice CD!!!! That was the BIGGEST blessing! I know I cried many times at home before transplant when she did it and then it had been so long when she couldn't. It's the little things that bless us so much!!! We got the official word to "GO HOME" from Vicki and Dr W, but we had a long day ahead with a three to four hour blood transfusion coming. Karrie's hemoglobin was 9.9 and they want it at 10 or better. Karrie had fun at her last physical therapy session with Kevin. She even did a little running holding Mommy's hand. And poor Kevin, he had tears in his eyes when talking to Karrie about her going home. We were sad to find out that Karrie's favorite person, Cristie - playroom, was off Monday, so we did not get to say goodbye. It was very difficult to pack our four week stay while an active three year old was in need of companionship. But the blood transfusion started and Karrie took a nap and the packing began. Daddy and Grandpa arrived to take us home and we headed out before 6pm. The look on Karrie's face getting into the van and pulling away onto the street, was one of true gladness. She was feeling good once home and even ate a little. No hugs allowed from brother who is still coughing. That was a tough thing!!! The night was a restless one with Karrie crying out often and Steven coughing.
Tuesday morning (21st) was a complete opposite from Monday!!! Karrie woke 6:30am and threw up about half of her night feed. She said she was glad she got that out of her! How cute! However, we realized we missed a nausea med dose by a half hour and that must have been what did it. Our day was filled with meds, feeds, tv, Candy Land, and she also played in her room for quite a while. Karrie was not happy about getting a bath and spent ten minutes beforehand crying "I want my Daddy!" A good nap helped her feel better. She also said at supper that the cold water she was drinking made her throat feel better. She wanted to eat, but nothing this time. Another night of Steven coughing and meds and feed. Mark and I are not getting much sleep!
Wednesday (22nd) put us on the road by 6:30am to Cleveland for Karrie's second radiation simulation appt at 8am. She did great even though a little grouchy. The team in radiology oncology are wonderful!!! Today they used x-rays to continue planning her radiation site. Once Karrie recovered from the sedation we went up to the clinic for counts and a meeting with Vicki. Karrie has GROWN as several have thought!!!! It's only in centimeters, but she went from 97 to 99cm!! Her weight remained the same since discharged on Monday - 15.1kg or 33lbs. Karrie kept busy coloring and such while blood was drawn. Then the music therapist, Emily, came in with the Qchord and then a keyboard. Karrie loved that!!! We may have a future musician yet!!! American Idol here we come!!! Ha! Ha! Karrie's counts were great, too!!! White blood cells up from 2.3 to 3.3, Hgb 13.5 (good transfusion Mon.), and platelets holding steady at 37!!!! We pleaded our case for another week to settle in at home and get some sleep before starting radiation with the early morning trips. Steven has had some rough moments emotionally since Monday, plus he still is not over his cold and cough. Mommy and Daddy are whipped physically from lack of sleep and constant care - no nurses to do all the meds and feeds anymore. And Karrie is not getting enough feed or sleep yet. She did sleep on the way home and we all laid down to nap for a while once at home. Karrie ate peas for supper - whoo ooh!!!
Thursday (23rd) began with what has become an every day thing - Karrie crying to go potty between 6-6:30am. Her belly still isn't right so her stools are not good either. Karrie enjoyed many things at home including bears, babies, cards, tv, and videos. She was very talkative and moving well. She helped Mommy unpack some of her toys and was very proud saying "Look Mommy! I can bend down to get this bear and I have my heels down, too!" She was much happier for bath time, too! No crying!!! Karrie was very happy to have Aunt Cindy and cousin Jarret come play with her while Mommy took Steven to the doctor. Jarret and her were the tornadoes that went through her room, but they had fun!!!! And she had quite the three year old tantrum when Aunt Cindy told her it was time to take a nap. Karrie can turn it on and off. It is quite the hoot!!! Meanwhile, Mommy and Steven met with Dr Strong - love him!! And Steven did a lot of breathing for the doctor to listen to his lungs and then had a chest x-ray done to rule out pneumonia since he had a very slight wheeze. He is on an antibiotic and steroid now and we hope to see a difference soon!!! We enjoyed pizza (yes, Karrie did, too!!) for supper and Karrie singing with her pink microphone to Bo Bice again!!! Oh the tears of joy!!!
Friday (24th) was another early day with a trip to Cleveland at 5:30am with Grandpa Richard for a 7am radiation planning appt. Karrie slept the hour ride and once again had no problems with sedation or anything. She did continue to sleep for the first half hour in recovery. Poor thing is tired!!! We were done before 9am and got some donuts and a breakfast cereal bar and headed home by 10am. Oh what a beautiful day!!!!!! Thank you God for the sunshine for these long trips!!!!! Karrie sang "Row Row Row Your Boat" and then colored and talked all the way home. Grandma and Grandpa Dodez came to play. More diahrea and started back on Immodium. A long nap that Mommy and Steven both enjoyed, too! More peas for supper, plus mac n cheese.
Today (25th) or yesterday (depending on how you look at it) was a little easier day. Karrie was still up at 6am with diahrea, but she and Steven played so good most of the morning! It was so good to see them together - well still not too close though. Steven is still coughing, but not so much at night. We are all sleeping better, so maybe that is why I have been up late the last two nights. Naptime is great though because the kids sleep two to three hours and Mommy even gets an hour or two. Karrie was Daddy's girl this evening. And Steven, well I'm not sure what to say about his 30 minute long uncontrollable crying fit after he woke up from the nap he didn't think he needed to take. He did sleep, but he was not easy to wake up. Oh well, he'll be fine!
We were quite challenged the first couple days with the additional care for Karrie and the early morning appts. But thankfully, the weekend is here and things have become routine again. Didn't think we'd ever get back to that! It is kind of nice to have a boring day at home!!! Then again nothing is boring anymore with Steven and Karrie. We are also thankful that Vicki and Dr W agreed that Karrie wasn't quite ready for radiation and that the family needed a break. So we will be starting radiation on March 6th running 12 consecutive days minus weekends and our appt times will be 7am except for Wed which will be 8am. Oh my! Pray for us! We continue to say prayers for our friends and their families at the "Orange" (Akron) and "Pink" (Cleveland) hospitals: Taylor, Jonah, Megan, Gage, Haley, Diamond, Derek, Sarah, Katelyn, Kylie, Eva, Sarah Mae, Dominique, and Kayden. The update on Taylor is kind of good news in that she did not start chemo this week, but only because her counts are not high enough. Good for Tricia and Jarrod and family to have more time at home. Last week was rough on their family as Tricia's grandfather passed away. So they needed some more time together this past week. Taylor will be admitted this Tuesday for the kidney test and then the high dose chemo will start Wed. Please cover Taylor and her family with your prayers!!! May Taylor's organ's be protected! May she continue to be strong and tough! May her stem cells take hold and grow all those cells she needs! May her recovery be "normal" and uneventful and speedy! May Tricia and Jarrod and family have a "peace that passeth all understanding." Update on Megan, too, is that she is doing well considering all she has been through. She isn't eating yet, but wants to in the worst way. She is moving slow, but moving! She continues to need transfusions for her low counts. She looks good!!! Praise God for His answering our prayers!!! We hope Katelyn, Kylie, Eva, Sarah Mae, and Dominque find themselves on the homefront this week and feeling better!!!
I read a little (big) thought by Corrie ten Boom on a sayings calendar in my room this morning. It says: Faith is a Fantastic Adventure In Trusting Him I have not considered any of Karrie's illness fantastic or this journey an adventure, so I reworded it: Faith is Finding Amazement In Trusting Him And we continue to be amazed at God's work in our lives and each of your's as well! Happy worshipping today!!!! We love you all! And once again Thank you!!!! 2-18-05 Saturday (late) We are busy Counting Our Blessings!!!! Wow - we knew you were all out there, but it is such an encouragement to hear from you!!!!! Thank you for responding to our blessing count, and if you haven't yet, we are still counting and look forward to hearing from you!!! We want to say a special thanks to three key people and one awesome group. People we do not even know (thank you God) are sending us cards and e-mails. We may have never received their blessings though if it were not for those of you who have kept your family and friends updated. Steve Crites, Jana Muntin, Cheryl Ledford (OCC prayer chain) and PRC (co-workers) have been the major connections for many of our blessing counts and we are so grateful for their efforts and commitment to prayer!! Your friends and family that don't even know us are praying for us and we are humbled and thankful!
There have been some concern about bombarding us with all these e-mails. And although I have spent much time reading them, I don't believe it has been a detriment to Karrie's care or my well being. Actually, the opposite is true. I am amazed at how upbeat and joyful I have been able to be, especially when she is crying and cranky sometimes. God is good! I was so concerned back in December that I would be a mess for this whole stay and no good for Karrie. But you all began praying then and God has carried me through this. I'll be the first to admit, I bring on some of the physical pain myself with late nights of writing. But otherwise it has been at least bearable, but sometimes even pretty good. Please continue to pray for me (physically, emotionally, spiritually, and mentally) because with going home this next week, I will be returning to my responsibilities on the home front and my to-do list (my own worst enemy). I have realized although being in a hospital 24/7 caring for Karrie, I have been relieved of all the tasks and responsibilities at home, which have always taken up the majority of my energy and time. (THANK YOU TO THE AWESOME CREWS THAT CLEANED THE HOUSE FROM TOP TO BOTTOM. We are humbled and grateful!!!!!) Anyway, what I was going to say ten sentences ago is that I have received such support and encouragement from your e-mails. A friend said to me, "I read your updates, but I don't know what to say to you." I assure you that if you choose to write to us, God will give you the words and bless those words. And believe me, there were several people who wrote longer bits and the tears of joy just flowed!!!! Another thought for those of you who want to e-mail us and share yourselves with us, please share about you and your families. We all know our journey. We are an open book. But it is a good break from out story to read about how some of you are doing with your family, hobbies, jobs, etc. Believe me, if I don't have time to read them, it will be because Karrie is well and keeping me busy. Fun!!! and we don't want it any other way.
On Wed afternoon while Karrie slept we had a very very good meeting with Vicki, the nurse practitioner for bone marrow transplants. Here is a list of some of the issues and rules that we will have to adjust to on the home front the next couple months: *NO wood burning stoves or fireplaces. Wood has mold which is a fungus and that is very bad for Karrie. No Aunt Cindy's or Aunt Holly's. *NO live flowers sitting in water allowed in the house. Limited new plants also, because the dirt has mold, fungus, etc. *NO church for Karrie for four to six weeks. And then NO going back to class. Once ok to return to church we will be last in and first out. *NO going to stores. In two months it might be ok to go on a weekday in the morning when it is less busy, but it will be a long time before Karrie is allowed to go to the mall on a Saturday. (Not that we did that much anyway.) *NO fresh fruits (bananas and oranges ok since have peel) or vegetables. Canned and frozen are ok. *NO peanuts - grown in dirt. *NO new pets. *NO introducing anything new unless ok'd by transplant team. *OK to have healthy little friends to come play!!! Yeah - Jarret, Lindsey, Annie, Emma, and Taylor! *OK to go outside in nice weather and good to get exercise. *Must use sunscreen and limit sun exposure. Skin color changes and dryness will be worse. *Other patients with transplants were further along with their tube feeding toleration than what Karrie was last week. *She has no taste buds. *The primary tumor is never found in some kids. They are sure the tumor that was removed was Karrie's primary. *Immune system not stable for six to nine months, although Karrie's immunoglobins are at a good number! *Likely to re-admit at least once in the first 100 days for illness. *Return to hospital if fever is 100.5F two times in eight hour period or 101F once. *Could get sick from her own bacteria or something caught from Steven or others. *Karrie has really good numbers, really good cells, and really good neutrophils which will help her do better. *Radiation side effects to hit about half way through treatments: skin site problems, vomiting, and diahrea. *Hair will start to come back three months from start of chemo (end of April). *The 100th day after transplant is the date that things might change. So come summer dirt, fruits, vegies, etc. will be ok. *100th day (about Mothers' Day) scans will be done to see how she is doing. *Scans will be every three months, then six months, then annually.
Karrie's rest of the day - 15th: woke from nap cranky bad, then had very bad tummy pain, visit from Dr W, thought little bumps on head are hair follicles that were supposed to make hair after round six, but not they cannot, open more mail, Aunt Cyndi arrived, Mommy and Daddy had a nice dinner by the parent advisory council, talked to Kylie's mom and dad (Dana and Kirt), Karrie only wanted carried - no walking, read books in playroom, laugh, Mommy/Karrie time snuggling and giggling, cried in her sleep "I want that (pointing)!", creamed dry back. 16th: The PCA got through vitals without waking Karrie!!! Videos, throat hurt so bad, throw up a bunch, tv, walk to couch, paint nails with Mommy, PT with Kevin including flip flop faces and standing on mat, stand and sit playing ball, walking, Barney, wanted a drink - maybe one sip, music therapist came with keyboard for Karrie to play, She had fun!, talkative, open gift from Taylor - Princess backpack on wheels, she takes it every time we leave the room, Swingo Bingo (memory game) on hospital channel, won a prize (big stuffed Nemo fish for Steven), Nap with Nemo at first, Karrie not sleeping, Dr W, Grandma & Grandpa Richard arrived, Nap over, weight 14.7 kg or 32.3 lbs (down from 15.2 or 33.4), paint and markers, "write", tired, stickers and nail painting with Grandma, wash down with Grandma's help (Thank you, Mom!!!), throat hurt.
17th: Slept soundly, no nutritional concern with weight decreasing, counts also decreasing, electrolytes good, throat hurt, no throw up, videos, Nurse Lauren who keeps up on Karrie's web site working with Deb, paint in playroom with Cristie, Dr W, feed changed to meal time boluses and then 12 hour continuous night feed, she is getting full nutrition and any by mouth eating is bonus, decreased narcotic pain med, will allow platelets to go down to 15, get Karrie to a home care regimen, soft belly, Karrie and Cristie do stickers outside our room on window bench, PT with Kevin and little girl Eva joined in the games, stood and kicked ball well while standing on a mat, better balance, walking, tired, perked up for Cristie and more stickers, Barney songs in book, long four hour nap, Mommy slept some, Karrie woke cranky, Daddy and Greg, Mommy go out with friends (thanks girls!), Greg drew Tigger to go with Pooh and colored it all, "writing" down everything she did today - journaling like Mommy, talkative.
Today (18th) there was no blood drawn for counts. They will do that again tomorrow. She had some tummy pain. Walked to couch and we listened to music and painted nails. We went to the playroom to see Cristie and paint. Karrie stayed with Cristie for an hour while Mommy was back in our room. Our weekend plans were cancelled because my family has several people with flu, colds, and sore throats. Big bummer, but what can we do? We will try to salvage some of it by taking Steven to a movie up here in Cleveland tomorrow afternoon. Karrie tolerated all her feeds today and did not need any pain meds!!!! She allowed me to put her shoes on which is a big deal with her not putting her heal down and her shoes hurt back when her feet were swollen. More painting, walking, and riding toy and then books and naptime. She slept another four hours again! Mommy slept one hour or less. Karrie asked to look at computer pictures of her and Steven - how sweet!! She is more like her old self!!!!! We had a movie and popcorn night with just Mommy and Karrie!!! It was fun and Karrie showed interest in food for the first time. She had some licks of popsicle and a few kernels of popcorn. Didn't want the applesauce though. Talk with some other Mommy's about their children. They may be here longer and we are doing well and ready to leave. Hard to say the right things when we are so joyful. Late night - bed after 11:30 for Karrie. She helped say her prayers for the first time since home!!!!!! Wonderful!!! Ok, that is all for now. I am exhausted! Please pray for Mark - that is all I can say!!!!!! Please pray us home on Monday!!! May God choose to bless our time with Steven tomorrow - today!!!! Thank you all! Oh yeah, pray for Taylor who will be going in to the hospital on Monday for a test of her kidneys and then the high dose chemo should start Tuesday. Pray for Tricia and Jarrod and the boys and family!!! God is healing our little princesses!!!!! Thanks and we love you!!!!
2-14-05 Tuesday afternoon ( 2nd entry today) As of 11:30 this morning word is that there are still some issues to workout: feed, vomiting, pain med, and walking. We are looking at coming home Monday or even Tuesday. It's really ok though! We were nervous about going home. We also didn't want to pack up, go home if she's not doing well most of the time, and then return again within the week. God is still good and He knows the plan. He knows exactly what we need right now. Karrie has also developed clear, itchy bumps on her head that they are not sure about. They can be a discomfort for Karrie, especially when she is tired or grouchy. Hopefully, benadryl will alleviate the discomfort. Karrie did fine in radiation this morning. She saw a video of two other young children talking about the radiation treatment. She was sedated while on Mommy's lap and then put onto a bean bag like thing that hardened to make a mold for her to ly in for treatments. Then they marked her belly in three places with a green Sharpie permanent marker (nothing else is better) and put clear circle stickers over them to keep the mark there for the treatment duration. After that she had a CT scan and they even took digital pictures of her which they printed paper copies for us. From there we went to recovery and she came out of it happy once she got awake. Grandma and Grandpa Richard were here with us this morning. (Thanks Mom and Dad!) Karrie napped for an hour or so once we got back to our room. The radiation plans are for the prelim appointments next Wed and Friday - 7 or 8am - OUCH! I guess, Karrie and I both need to learn to go to bed early and then try to be morning people for the next month, because then the radiation will be those times for 12 more consecutive visits minus weekends starting either Feb 27th or March 6th. Three girls from an area salon come the 3rd Wed morning each month to pamper patients and parents. Mommy was treated to arm and hand massages (much needed after all that typing last night - ha! ha!) and then a manicure of Karrie's favorite color pink!!! Too bad Karrie was sleeping, but she probably wouldn't have let them do her's. The three girls: Angie, Gabriella, and Sarah were angels in fashionable clothing!!! After Wiggles and "writing" in her princess notebook, daddy arrived and the smiles and hugs were so BIG they almost burst the door of the room open. She is now back to coloring her Doodle Bear purple after opening a bunch of mail - thank you everyone! As for me, ok, I am exhausted and in much need of a nap and a massage!!!!!! Pray for me! Doesn't God work for us even when we make mistakes! Can I go from mistakes to miracles??? (Although with the tremendous response already received for Counting Our Blessings, how can I say my early morning update was a mistake?!!?!?!?!) Thank you and we love you all! Praise God as He continues His work here at Rainbow. Please also pray for Steven who will need to endure a few more days (including a four day weekend) on the home front away from Mommy and Karrie and only part time with Daddy. However, Mark and I are planning a get away for the weekend once we get a sleepover aunt lined up for Karrie! Keep up the prayers!!!! 2-14-05 Tuesday night late "Hope is often the key to discipline when the outcome has greater value than the discomfort required to achieve it." -Michael Easley, President of Moody Bible Institute/Today in the Word, February 13, 2006
Ok, it is late (12:25am). But somehow I cannot get this done at any other time. There is not enough time in a day for everything. I don't feel I can put it off any longer, because tomorrow is another busy day!!!! And we need our prayer warriors to be informed for any battles ahead of us. But for those of you who would like the shortened version - here it goes. (Who knows maybe I will stop at that also! I also noticed I received more responses with that short e-mail than with any of these lengthy ones. And speaking of responses, please check out one of the last paragraphs about Karrie counting her blessings.)
"And we know that in all things God works for the good of those who love him, and who have been called according to his purpose." Romans 8:28
Day 10: Vitals, moaning, morphine hits, cry for Mommy at night, diaper changes, diahrea, loose cough, throat and cheeks hurt, swab mouth, counts coming up, platelets, Vivinex feed, itch and nausea meds, IV supplements, Nurse Molly, very tired, purple popsicle, variety of beverages out, drink little or none, Barney, art therapist - valentine making materials, cry for Daddy, cranky, mean, big valentine with all the names of the people Karrie loves, fight about walking, Grandpa and Grandma Richard, books, mail and gifts from Taylor, wants Daddy, called Daddy several times to please Karrie, she didn't talk to him, earliest date for radiation - 27th, more likely the next week, puffy cheeks means healing, white cells working, Mommy took a walk outside, complaining and crying at naptime, diahrea, itch med makes her sleepy, good nap, Daddy and "Big" Steve, numerous diaper changes in two hours - diahrea, throat and mouth hurts, went to bed earlier than usual, Nurse Nicole, sweet talk a little, Daddy's night, Mommy rode home with "Big" Steve, Night of wide awake hours and diaper changes, Mommy home to hug Steven as he was sound asleep.
"If God is for us, who can be against us." Romans 8:31
Day 11: Big green throw up 1am, awake again 4:30 to 6, itchy, Nurse Deb, stop morphine, switch to another med for pain, watch closely for pain management, itch med, full strength feed, bath, unhook to take walks, throat hurts, Counts: WBC 1.7 ANC 980 PLT 30 HGB 12.4, receive platelets, how does Mommy keep up with Karrie Daddy wonders, activity room, painting, nap three hours, Aunt Holly & Uncle Jimmy, Barney, stickers and colored paper, make pictures for Steven and Ashley, throw up again, feeding tube came out, nice to see no tape or tube on cheeks, tummy hurts, diahrea, puzzle, 1/2 game of Go Fish, Woodkins doll, boy and girl dolls sent home for Annie to have back, feeding tube put back in - oh she fought until it went in, bedtime routine with Mommy. (Steven and I had a great day running errands including letting him drive the cart at Wal-mart and Buehlers and lunch at Wendy's to spend more time together as Steven put it. We also had another fast go of ball rolling and several games of Candy Land.)
"In order to see the rainbow, you must first endure the rain!!!" - Unknown
Day 12: Up several times in the night and back to sleep, stop standing on her own for weight, Mommy or Daddy holds her, numerous diaper changes, belly hurt, electrolytes beautiful per Dr W, feed backed down to 2/3 strength, ANC over 1000 stop antibiotics, stop itch med, radiation plans, sleep in AM, diahrea, Barney, disconnected from IV and feed, walked seven laps - wow!, color in activity room, walk more, ride toys, decorate big valentine more, books, short nap, itchies, belly hurt, long nap, Barney, walk after 9pm, books, little blood in nose, holding off on giving platelets, carried diaper bag and doll, clear runny nose, foam stickers on cards for Steven, Daddy, and Mommy, sang "I Love You" song with Mommy!!!! (First time since we left home!!)
"...in all things we are more than conquerors through him who loved us." Romans 8:37
Day 13: New resident Hanna, slept good all night, Nurse Deb, slept through weight, kissed Mommy, awake 10ish, throat hurts, full strength feeds again, adjust pain meds again, last dose of Neupagen - white cells and ANC up high enough, no IV fluids, changing IV meds to NG tube, get platelets, discharge planned for Thursday, Wed radiation planning including sedation, Grandma & Grandpa Richard, art therapist and valentine card for them, disconnected from feed, Kevin - physical therapy, flip flop faces, bounce and catch the ball, stubborn at first, don't like Dr W, does like Vicki, bathtime, throw fits, nap early and long, Wed discharge planning, awake before 5:30pm, laid flat on back all evening, diahrea, numerous diaper changes, Daddy and Beth, not interested in doing anything, slept another hour, pain meds making her sleep?, Nurse Diane, let Mommy in bed with her for a little bit, awake late into the night - 11:30
"God's love for His children is further proven by the control He exercises over their circumstances." -Michael Easley, President of Moody Bible Institute/Today in the Word, February 14, 2006
Happy Valentine's Day! Throat still hurts, but not as often or as bad. Adjusting pain meds to work better on pain and not make her sleep so much. Throw up several times today. Not green anymore and still dealing with the mucous build up. Vitals good. Weight 15.1 - down a little. Barney and Blue were the videos of the day. Loved the bag of PRC valentines! Make more valentine cards for Aunt Cindy and Aunt Cyndi. No pain, but then there was - throat. Platelets 31 - none needed today. Electrolytes very good. Still adjusting the feeds, pain meds, and nausea meds. Sedation for radiation planning will be 8:15 tomorrow. (Oh yeah - what am I still doing up?) Plan to come twice next week for radiation prelims and clinic visits for counts. Physical therapy with Kevin was awesome today. We now get out Aunt Laurie's flip flop faces and use Kevin's, too. I video'd her playing - what a hoot!!!!!! Not wanting to walk and only did a little bit today. Played ball with Kevin, too. To activity room to make another painting - this one a valentine for Cristie who works in the activity room. Karrie said, "I love her!" She also got to make purple play doh with Cristie. STEVEN ARRIVED ON THE FLOOR ABOUT 1PM!!!!!! His first visit in three weeks. Karrie and Steven hugged and said the I missed you stuff. We had a fun time in our room for two hours. Karrie received some wonderful gifts from her cousin's Sunday school class - everything pink and purple. (Thank you Kathy!) Karrie tired and down for nap while Steven and I took a nice walk!!!!! Her clear runny nose continues and an occasional cough - both present before Steven came on the scene today. After an hour nap she woke crying for Daddy and then laid in bed awake, but tired for another hour before falling back to sleep. Aunt Cyndi came to visit this evening and we had fun sharing valentines. Wonderful bedtime routine - books, talk, prayers, and songs. Woke at midnight though and threw up again - third time today. She felt better afterwards. She said she was glad she got that out of her because she didn't want it - mucous. We had some cute hugs, kisses, and love you moments then!!!!!!
Ok, I am crazy! Don't look at the time. Just keep typing!
Take a look at the web site photos that Aunt Cindy has added. Thank you Cindy for all your work on the site. Karrie and Steven's smiles are extra special since I haven't seen much of either of them lately!!!!
Karrie began this treatment stay with wanting to read a new favorite book every night: "Count Your Blessings" - a Berenstain Bear book. So I thought that it would be wonderful to count our blessings, too. And each of you have been our blessings. Early on we thought numerous times how neat it would be to find out where all the people praying for Karrie were located. We never did anything further until now. We know God has orchestrated an amazingly huge circle of love, prayers, and hope. Could you please help us see how big it is. If you have received this e-mail through some connection of family and friends or you are reading this update on Karrie's web site (karriedodez.com) WOULD YOU PLEASE RESPOND BY SENDING AN E-MAIL TO email@example.com. We would like to know the following: Name (at least first and last would be nice, too), your city and state (if outside the USA - your country), and lastly, how you are connected (friend of a friend of a family member, etc.) We are grateful for each of you and would love to put a name and location with all the prayers lifted for us the past seven months. And if you are not the praying type, we still want to know you. And who knows maybe someday you will choose to pray to the God of miracles.
Now it is time to pray us home again!!!! The plan is for us to be discharged on Thursday. There is no guarantee we might be back in within the week with a fever. But they will not keep Karrie if she continues to do so well. God is amazing!!!! We ask for prayers for the pain management and for her whole GI tract to be healed so there is no more vomiting or diahrea. We ask for her continued progression toward returning to the Karrie we know with all her loveliness!!! We ask for peace of mind for Mark and I as we head into new territory with not knowing what complications we may have in the future. Please pray for the sedation Wed and the radiology planning. Please also lift up some new friends: Sara Mae is back in - Amish girl, age 3?, has a rare disease and she is the first they have tried a transplant on, one year anniversary of diagnosis was beginning of Feb; Sarah, age 15, leukemia, was in for fever last week, and Mom, Carol; Kelsey and young parents, Dana and Kirt, who will be in for chemo and care for three weeks every month for six to eight months. Also remember Taylor who had a fever stay, but no positive cultures and should be home feeling better. Megan should also be on the homefront, we hope. They have been in the hospital for five months and last I heard today was their home going!!!! Jonah seems to be doing well also.
Ok, that is it! Am I going to regret this when the morning light comes in our hospital window. Well, maybe I should ask for prayers for me: energy, strength, and joy. And of course for a good nap!!!!! Thanks everyone! We love you!!!!!
2-9-06 Thursday night late............... "You can only walk so far into the forest before you start to come out the other side." Unknown
Did I hear her right? Discharge planning? Despite another long night of up every hour and a half to tend to Karrie who was in pain and needing mucous suctioned, a diaper changed or help vomiting, we have received more good news! THE END OF OUR STAY IS NEARING! Dr W and Vicki were in this morning and could hardly keep from laughing at how talkative and demanding Karrie was - keeping Mommy on her toes. They suggested I get some relief help lined up for the day. And yes with white counts up to 300 and Karrie healing, they told us they expect to get us out of here by the end of next week. That would be just a few days short of the four weeks that we thought was a given. We are not holding our breath though, because anything is could happen. Although with God in control, we will manage what comes our way. And ending this stay only means our three straight weeks of running will resume for the radiation treatments. So either way, we are living in Cleveland a lot for another month.
It's still a rough go and extremely challenging with a three and a half year old that doesn't feel very good. Between her mouth and throat hurting, her body itchiness, and the diahrea, she is constantly needing something. And usually the first answer you get from her is changed and then she still isn't happy with what you do. They did up her morphine hits to a higher dose which is now able to be given every 30 minutes rather than every 15 minutes. I'm not convinced it is doing what they say it should. She may have some relief from the throat pain, but then the itchiness takes over (from the morphine and healing, too.) They made her nausea med scheduled again since she had two vomiting episodes and her diahrea med was rescheduled for more often. Karrie has also started her feed again, but today it is a clear Pedialyte given at a very very low dose just to get her gutt use to something coming in. Karrie's vitals seem ok today and no fevers, even tonight!!!! Mommy wasn't the only one with a tough job today. Kevin from physical therapy also didn't fair to well with getting Karrie to play flip flop faces or ball or anything. I did make Karrie walk half the way to the couch and back. She wasn't too happy with me. She did take a three hour nap again, but it was interrupted too often by her waking enough to cry in pain or in need of something. I was proud of her for swabbing her own mouth with a numbing med, drinking another med, and even brushing her teeth today! She tries to be independent with whatever she can.
An extra special thank you to my relief team today. Thank you Jana and Aunt Cyndi for coming to give support and help where Karrie would allow you to. Jana read some books to Karrie so Mommy could eat lunch and she also brought some special cards from her girls and Karrie's Sunday School classmates. Aunt Cyndi and Mommy did get to witness our wonderful Karrie return for a few moments. Karrie was talking like her old self including rolling her eyes and ending it with her "uuhh!" sound. It was a joyful moment and a relief also from the unhappy and demanding little lady she has been all day.
Karrie received platelets early this morning and then blood this afternoon. I did receive more info on the University Hospitals platelet donation program. It is on hold now because of remodeling. So all platelet and plasma donations will need to be done through the Red Cross. Let me know if you have trouble finding blood donation info on the karriedodez.com web site.
I did question Dr W about the events of Tuesday night with the nurses and residents not agreeing and Karrie's numbers not good. She explained it like this: They had Karrie on restricted fluids which put her as close to dehydration as possible without her being dehydrated. Then she got a fever and that used up some fluid which made her blood pressure and other numbers bad. So as they did Sunday night in PICU (which Dr W told me again had she been aware of Karrie's condition and numbers that night, Karrie would not have been sent to PICU), they gave her fluids and all was well. Dr W was made aware of all that was going on Tuesday night by calls made to her about every half hour. So she didn't get much more sleep than we did. She also said that the chest X-ray done Tuesday night showed some fluid on the lungs, which she knew was there, but no signs of pneumonia.
I just want to let people know that if you are receiving these updates from several different people and would like to be removed from any of them to make your life a little less cluttered, please do let the appropriate people know. If you would like added to or removed from the OCC prayer info e-mail let me know and I will let Cheryl Ledford know. If you would like to receive this update directly, please let me know. I did take the liberty to add some of you, who have kept up with Karrie via the web site where these updates are posted, to this direct update. If you prefer I take you off, please let me know.
Steven seems to be doing well. He may be able to come visit tomorrow evening. Mark is tired and trying to keep up with work, home, and hospital. I am struggling with lack of sleep (I am earlier than the last couple nights) and a nasty discomfort in my midsection for several nights now. It's probably stress and physical strain. Please pray for each of us, especially Karrie as she endures this battle to get back to her loveable self. Pray for the pain and itchiness to lessen. Pray for the diahrea and vomiting and mucous to decrease. Pray for her strength and ability to get moving more with each day. Pray for her organs ability to function properly. Pray for protection from infection. Please also pray for Sarah who is 15 diagnosed a week or so ago with Leukemia and her mom Carol who I just met tonight. They have a church family and faith, but they are new into this battle. Sarah came in again due to fever. Pray for no infection and strength and hope for all. Continue to lift up Megan and Taylor as well as the rest of the Akron gang and Christi Thomas who is in a tough battle with this NB disease.
Thanks again for everything you do! Every one of you have been a gift to us from God who knows what we need!
2-9-06 Thursday morning early "...we also rejoice in our sufferings, because we know that suffering produces perseverance: perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us." Romans 5: 3-5
Our long night continued, but improved for the most part. Dr W was called and they started her on albumin (pulls the fluid back into the veins from the tissues) and "chased" it with the lasics to make her urinate. A chest X-ray was also ordered and done about 1:30am. Karrie continued with mouth pain. At 1:45 her blood pressure stayed about 80's over 40's and her oxygen level was 99% with the oxygen mask on. I finally went to bed about 2am after eating pop tarts and surfing another NB site - Christi Thomas. Please do pray for her and her family who have been battling NB since I believe 2003. I was up every hour or so for diaper changing, mucous suction, and vital checks, which stayed mostly unchanged. Word was that the X-ray was ok and that the bottom number on the BP was the only real concern because she had run the top number 80's before. Her weight is down some to 15.2 kg at 8:30am. We slept until 9am and then after vomiting, Karrie sat on Mommy's lap in a chair for a while. Grandma Dodez and Grandpa Richard arrived and Grandpa was Karrie's best helper when Mommy wasn't right there. She even giggled or had some happy sound with Grandpa that the nurse noticed she hadn't heard before. Karrie sat by herself in the chair for quite some time. She watched cartoons with Grandma and Grandpa, too.
Karrie is having a ton of pain - mostly in her mouth and throat. They increased her morphine and she can still receive additional hits every 15 minutes. The pain is explained like this - As her white counts increase those white cells will go to the places of infection and inflammation and fight, which causes the pain. So our days may be worse, but not in medical numbers - those are getting steadily better (white cells are up to .2 today) - but in the amount and severity of pain that Karrie is enduring. She has a numbing med for the sores and a suction thing for the mucous. She also had some tummy pains and plenty of diahrea today despite the Immodul she is on. Karrie wants drinks, but then won't drink or drinks but won't swallow because it hurts. She is also very itchy in several places - problem with morphine or maybe the healing starting in certain areas? Dr W was only in briefly and commented about everyone's lack of sleep last night. BMT Nurse Vicki checked her over and said her mouth looks a little better. After reading some fun Pooh books from the activity center, Karrie took a three hour nap. Unfortunately, she woke with more diahrea and a fever. Her oxygen level was not good either, but it came up after being awake a little bit. Karrie kept us very busy with the mucous suction even though we told her it was drying out her mouth making her throat hurt more. We medicated several ways to help her pain, but nothing was working. I pushed the button to give her a hit of morphine after 8pm and it didn't work. Here the pump had been turned off for the last hour. OH MY! No wonder she was absolutely mean and uncooperative with Daddy and Mommy! Karrie has began talking more, but unfortunately it is mostly about her pain. After a tub bath, we got Karrie to bed, prayed with our friend Mike, cried some tears, and then all quiet for the night - I hope!
It is so heart wrenching to see Karrie in so much pain. I absolutely hate sore throats and I am a baby when I get one. I cannot even fathom what her's must feel like! Please pray for the pain to go away soon. It is a catch 22 because we want the white cells to grow, but the more they grow the more there will be to fight the inflammation caused by the chemo and then the more pain - for a while anyway. Even since going to sleep she has been moaning and gagging some and in pain. May God grant her some relief soon!!!! Karrie will likely need platelets again tomorrow. They took several blood draws today to keep and eye on that. I am getting info on the University Hospital donor program that it is most likely closed for now. I am going to double check with another person tomorrow. So for now please get the information off the karriedodez.com web site about donating blood and platelets. See the home page or the how you can help page. And thanks for giving Karrie and others like her another day to live.
Your encouragement, prayers, and visits are still needed. We are humbled by and grateful for all the support in so many ways we have received. God is so good to place people in our paths just when and where we need them. And He continues to be a God of answered prayers!!! Thank you for praying for us! Pray for less pain, more rest, more words, more active, and peace and strength for Mark and I. Steven seems to be doing great and may be coming to visit on Friday. I will switch with Mark and go home to be with Steven again! Time to go again! Time for a lot of quality and quantity rest tonight - I hope! We love you!!!!
"Perseverance must finish its work so that you may be mature and complete, not lacking anything." James 1:4
2-8-06 Wednesday morning early Our early hours consisted of some quality sleep along with diahrea blow out and belly pain for Karrie. She did talk a little, which she hasn't done much of in days. Mommy gave Karrie her lion blankie and she said, "I've been looking for that." So sweet! She was restless by 8am, but after vitals she continued to sleep. Her weight is holding at 15.6 kg today, but it could be fluid related rather than a no weight loss indication. The rest of the morning included more blowouts, blood draw for counts, and stool culture (looking for C-diff, an infection caused by the toxins in all the antibiotics). GOOD NEWS! Karrie's 2am blood draw showed ANC (indicator of white cell growth) of .03 and white count of .1 - had been zero. Vicki had expected some numbers by early this week!! Praise God it is so!!!! They are still watching her other counts - calcium, sodium, creatinine, potassium, phosophorus, etc. MORE GOOD NEWS! All negative stool and blood cultures - no C-diff - no infections. Dr W says it is just her gutt and the engraftment causing the problems. Her platelet count was 30 at 2am and 22 at 9am. So she received platelets today again. (I am checking into some info given to us about a donor center here at University Hospitals, because now I'm being told that it doesn't exist anymore. Will let you all know tomorrow.) She also received potassium and calcium today, but they are limiting the fluid intake, because of the capillary leak and fluid build up she's had a lot. Since the stool culture was ok, they started Immodul for the diahrea - YES! And NO MORE VANCOMIACIN! PRAISE GOD! She received a small dose of Dopamine sp? to increase blood flow to the kidneys, but Dr W says the kidneys are stable. They will not push nutrition again until Friday, because her gutt cannot handle it for a while. It was important that they pushed the nutrition in the beginning right after chemo, so she didn't come to this point behind. Her coags look better after the plasma received last night and she will receive daily doses of Vitamin K via IV. Karrie goes through spurts of itchiness from the morphine. The report on microscopic NB cells in her bone marrow or not has not been received yet from LA and Dr Seger, but a sample of the stem cells harvested back in August was sent to LA for microscopic check for NB cells and Dr W recalls it came back clear. Yes! So we put all good stuff back in last week!!!!! Dr W and Vicki believe that this is the worse of the days and the days ahead will only get better with more white cells.
As for Karrie's activity the rest of the day, it has improved from the weekend. She wouldn't play much with Kevin (PT), but did kick the ball off the bed probably more from being upset it was on the bed than from wanting to play. Dr W had said Karrie's one job today was to play with Kevin. Well we made that all too clear to her and she wasn't responsive. Kevin believes that we took her control away and that is partly why she didn't want to participate. That is clearly all Karrie! If it is not her idea, she doesn't want to do it. She finally was up to watch a video. She played with a popsicle in a cup. She used a spoon to pull it off of the stick as it continued to melt. Then she mixed and played with it. And she kept sitting herself back up in the bed - each time with a frown at Mommy over on the couch. No smiles today!!! Karrie walked from the couch to the bed and back after some rest, music, and lean on Mommy time. Karrie slept a good three hours for nap and then Aunt Cindy, Uncle Tim, and Aunt Cyndi came to visit! Thanks Pasta Man Uncle Tim for the awesome supper delivery!!!!!! Karrie endured the NG tube going back in after it came up today when she threw up. She fought some at first, but we managed to get it in. And after that Aunt Cindy read her several books while she rested against Mommy!!! She was exhausted and went in and out of sleep moaning more often then other nights.
Karrie had not been feverish all day, but tonight she started another fever. Her other numbers were not good either: O2 level low, BP low, heartrate high! Her labs from an evening blood draw all looked good though and they didn't have to medicate extra to get anything leveled out. Karrie's throat hurts a lot and she is itchy all over. They gave her tylenol for the fever which helped and put her oxygen mask on to help the O2 number come up. The resident and the senior resident were in to check her and she sounded good. He believed it was all from the fever and they would just monitor her hourly. She was awake from 10:30 to midnight scratching and trying to get comfortable. We listened to some music and now she is going to sleep with more moaning and restlessness. Well, the midnight vitals were still not good and she was out! They had to wake her to get her numbers to come up some. The oxygen mask helped the O2 numbers, but the blood pressure is too low (80's and 70's over 40's, 30's, and now 20's). The Sr Resident checked her very thoroughly and doesn't seem concerned, but the nurse is very concerned. They will start her on some fluids even though she is fluid restricted. Her temp is down and her heartrate is good and then up at times. I asked about calling Dr W and she will be called before we go anywhere.
So from beginning to end that is Day 7 from transplant - and the start of Day 8. As you can see God answered many prayers and overall Karrie is improving. Earlier I thought we would gratefully have a quiet night, but I must admit I have wondered if PICU is in our plans for the night. Hopefully, Karrie will respond and be fine. And we will wake rested and ready for another day - be it God's will! Keep praying for those white cells to grow, Karrie's sore throat and itching to improve, and infection to not come near! I will be up a while longer - they are back in to check her again. Please pray!
2-7-06 Tuesday morning early It has been a very eventful weekend! Karrie's fevers continued up and down Saturday morning and she slept until 11am. She was not happy with the Dr who checked her during rounds. Her tummy hurt to touch. Plan to get platelets again and more lasics to increase outs. We went back and forth between videos and sleep. Daddy and Aunt Laurie arrived about 1:30. Diapers were a mess more often it seemed. Karrie warmed up to Daddy before Mommy left. They were so precious on the couch together!!!! (Yes, I took pictures!) Laurie and I headed HOME!!! Oh, it was so wonderful to see Steven! He was at the neighbors (Thanks Ronda and family!) and we hugged endlessly!!!!!! He was quick to get his shoes and coat and head out. We played Candy Land, ate pizza, talked about school, played more Candy Land and Parcheesi, too. It was absolutely the best time we've had in a long time!!!!! And the hugs kept coming!!!! We checked on Daddy and the resident told of plans to start Vancomiacin - an antibiotic we do not like. All of the -cin antibiotics and -tin chemo cause hearing loss. Mark made it clear that Dr W better be informed and ok it and that we did not like it. (GO Daddy!) Drs suspect the fever to be bacterial and not fungal because the fevers went up and down and did not truly spike. Daddy made it through a long night with diaper changes, blow outs, and little sleep.
Sunday morning her tummy hurt more. Her feed was stopped to give her tummy a rest. Dr said Neutrapenia sp? Colitis or fungal infection is what they suspect. Plan to do a CT scan of chest, abs, and pelvis. Morphine was changed to a constant drip. Karrie slept more and Daddy rested. Meanwhile, Steven and I had more good times! He endured a hair cut while watching Pooh and eating a sucker. Then we headed out in the snow to church. He pushed the cart at Buehlers while we got some groceries. We played more games and he took a nap while I packed and prayed. We had more good table time at supper and then rolled balls in the living room. We laughed and had such fun!!! Little did we know - Karrie and Daddy were not having much fun. About 5:30 her fever spiked, oxygen level was low, heartrate high, BP bad, and respirations not good. Mark had a room of people, but with lasics, tylenol, and electrolytes they stabilized her. They told him she almost went to PICU. Anytime meds went in her NG tube she had tummy pain. Diahrea had lessened without the feeds. Some concern of the lungs collapsing a little causing the O2 and respiration problems. She almost didn't go for the CT scan, but then they took her about 7:30. Karrie was doing fine by 9:30 when we called to say good night to Karrie and Daddy!
Once again - little did we know as Steven and I slept so well in our own beds - that Karrie was not doing well again by 10:30pm and was headed to PICU (Pediatric Intensive Care Unit). The same issues arose and the Dr decided that a one on one nurse would be better for Karrie, then a nurse on the floor with three other patients. Mark said things settled down by 12:30 and he slept 2 - 2 hour shots while the nurse in PICU took great care of Karrie monitoring her continuously. I was awake at 5am again and couldn't sleep for an hour, but was very surprised to hear from Mark at 8am with the news. After getting Steven on the bus after an hour delay, Dad and I headed up to Cleveland. Aunt Cyndi was at Karrie's bedside and Daddy was snoozing on the couch when we arrived. Karrie had an oxygen mask on and was watching Dora on a flat screen tv right next to her head. She was either on good drugs or very hipnotized sp? by Dora and really made no facial expression. She seemed comfortable for a while until she started complaining of being hungry and she cried and cried for a popsicle or Pedialyte. Well, the Dr decided that she could not have anything more than ice chips. She wanted nothing to do with those, no matter how many ways we played with them and talked about them. Eventually, she fell asleep and went between humming and snoring. She now has a morphine button we can push every 15 minutes as needed for pain. She received platelets again also. Mark also went to sleep back in our room on the floor. Dr W was in and indicated that she did not think it was necessary to be in PICU. I asked her to explain later and she said that her numbers had not been bad enough to be sent to PICU but because of it being the weekend she understood why they did what they did. She was happy to report that the CT scan was amazing! The residual tumor is gone!!!!!!! (We knew that would happen!) The lungs looked good except for a little fluid. The kidneys and liver looked good. And the bowel, which they expected to be inflammed, looked great. No Colitis! (Another point for the good guys!!!!!! Yes!) We would be moved to the floor by late afternoon - and we were back at our room after 5pm. Karrie continues to hum, have nasty blowouts (diahrea), pain in mouth and tummy (She cried out "I just want the pain in my tummy to go away!"), and fever. She got her purple popsicle and Pedialyte, but didn't take much of either. She enjoyed and endured a tub bath to help her bottom and even walked from the bathroom to the bed afterwards!!!!! She's slept off and on, but hums and seems restless. I read her some books after creaming and rubbing her itchy feet. I told her I could use a foot rub and she gestured (she doesn't talk much) that she would rub mine!! How sweet! As I finish this the resident (the one I like that we had last month) came in to tell the lab results. Some highs and lows in the electrolytes (calcium, sodium, and creatinine sp?) will be medicated for. Her clotting factor is low so they will be giving Plasma and Vitamin K - All per Dr W. (Another need for you to take the opportunity to give blood if you can!!!!!!!!!!!)
Well, that's all for now! God has not given us more than we can handle with His help (including all of you)!!! And we know that He is working through your prayers. We were told that days 5, 6, & 7 are the worse. We are in to the last one already and hopefully it will be uneventful!!!!! Thank you so much for the e-mails and cards that have encouraged us and reminded us that you all are out there pulling and praying for our little princess and us. Continue to pray for those white cells to grow, the meds to do their job, fever and any infection to disappear, pain to be managed well, rest to be had by all, and for the excellant care we have received. We love you! Goodnight!
"Remember this: God may not do what you want, but He will do what is right and best. He's the Father of forward motion. Trust Him. He will get you home. And, the trials of the trip will be lost in the joys of the feast." - Max Lucado
2-4-06 Saturday morning early We have made it to the tough days in this transplant process. Everything is expected considering she has no white cells to fight anything. But that doesn't make it any easier to see her go through it all. She is still very tough. We've thought for months that she must have a high pain tolerance. The doctor decided to make her morphine scheduled because Karrie would not say she hurt (her mouth) and she should be hurting if you looked at it. She did cry out yesterday and today with pain from a mouth sore on the inside right cheek. A numbing med seems to help her with that pain. Her renal functions look fairly good and they have been able to medicate for numbers that were down and with much success. Her fevers are running 99's to 101's. They have chose tonight to not give tylenol right away and see if she will have a spike. So far we have made it to 101.5 and they are waiting for 102.2. Her white count went to zero yesterday and Vicki believes we will see some numbers early next week, but still nothing significant for a week or more yet. She will likely get blood again on Sunday because they want to keep her hemoglobin above 10. She received platelets again today since they were only up to 22 from 18 yesterday. There is a great need for A negative platelets, so if you can give please do. (See the web site for info on how!) Yesterday there were no A negative platelets, but there was a donor coming in that evening with A negative blood. We hated to wait until night time to give the platelets, so they got O (universal donor) negative blood to give instead. They can give A positive to Karrie, but would have to medicate with a drug called Winrow.
Karrie sleeps late or at least doesn't want out of bed until after Dr W and Vicki come to see her about 10:30am. We then move to the couch and watch a video or two. The PT guy comes around 11am or so. Yesterday she played good, up standing even, and then moved out into the hall to kick the ball. Today she didn't want to participate much for the first 20 minutes and then tried a little while lying down. Yesterday we made it to the activity center to finger paint, cut, paste, and made a sleep over invitation for Daddy. Today we didn't make it out of the room, and that's probably ok since she's running a fever. I helped her walk from the bed to couch and back, but she wouldn't go far without much pain and some attitude if I pushed her too much. The diahrea has somewhat solidified at times. However, her bottom is very red and sore. Thankfully, the cream relieves a lot of her discomfort. She vomits only about once or twice a day right now. Thursday evening she was sitting up, but she had a tough time staying awake. We read books, but she would doze off and on. And tonight she extended her nap to 5 hours not waking until 9pm. She only lasted an hour on the couch and back to bed by 10pm.
The nurses and doctors have been very good at keeping her comfortable with pain relief and fever reducer meds along with all the other meds, antibiotics, feed, etc. We have truly been blessed this time here at Rainbow with such great care and kind people!!!! God has His hand on every interaction and decision. I like it better than Akron or our August time here, because the resident doesn't make the decisions. He/she has to call Dr W with everything. Like tonight the resident noticed her ins were a lot more than her outs and at 9pm said they would probably give her lasics to make her urinate. I told her that Vicki had said they did not want to give that at night so Karrie can rest (me, too!) The resident commented that it seemed to work earlier today. I told her she should check with the doctor before they choose lasics tonight. I talked to our night nurse and she agreed with me that she was told that actually the lasics earlier today did not work that well. As hoped, the nurse came back and said they would not do lasics unless her blood pressure wasn't good - an indication of too much fluid build up.
Your prayers once again have helped us. Wed. night was great sleep and last night was better quality then quantity. I was awake praying for so many between 4 and 5am when I could not get back to sleep. I hoped to update last night, but I stayed up too late as it was and couldn't do any more. Tonight is another late one. Some day I will figure out how to get to bed before 11pm.
Steven seems to be doing very well. My sister reminded me that he is at the age when he wants his Daddy more than his Mommy. God has the best timing - had he been younger it may not be so easy on him. His cough and cold have improved considerably. He has had a busy week with school and then spending afternoons and evenings with family and home a few nights with Daddy. He told me they were going to wrestle tonight!!!! He loves wrestling with Daddy!!!! I am so excited to go home tomorrow and spend some quality time with Steven!!!!! We are going to play Candy Land and Parcheesi! I cannot wait to hug my little guy!!!!!!!! We may even have some snow for his snowboard!!!!!
Daddy will be coming to stay with Karrie tomorrow night and maybe Sunday night, too, if the snow keeps Mommy home. Honestly, I could use a two night stay at home - it will be 12 days since I've seen Steven or been home. But thankfully, I have been blessed here. It has not been that bad. Our room is nice and the bed/couch is much better than Akron and the room warmer than here in August. And as I said, the staff has been absolutely the best!!!!
It is most difficult though at night when putting Karrie to bed. I do her prayers and songs and she is asleep before I finish and the tears just roll down my cheeks. I remember the nights at home in January when she felt so good and did her prayers and then we would sing together and do silly things. God will get us back to those nights soon enough, I'm sure!!!!!
I've heard that Megan (at Akron) is doing good, although there may be a concern that I cannot go into here yet. The doctor did say that she may be able to go home once she does not need platelets almost every day. Taylor is completing her round 6 as we speak, but since they started late Tuesday, they will probably not go home until tomorrow. She did have a touch of the flu early in the week that her brother had the weekend before. Tricia and I were able to talk via phone and that was truly a blessing! We miss each other so much! We are on the same road and need each other to complete our journeys!!! We are hoping our other Akron friends are doing well. We miss the familiar faces!!! Please continue to lift these children - Gage, Jonah, Derek, Haley, Diamond, Christi, Taylor, and Megan - to our God for His hand of healing and much peace and strength for their families!!!!
Please also lift Karrie up for rest, comfort, strength, joy and of course healing! We sure do miss her usual go go go personality. Although she did smile some today and she rolled her eyes at me this evening. Also continue to pray for her organs to be protected, the stem cells to engraft quickly and grow those white cells, and for her testimony to the power of prayer!!!!!!!!!!
Ok, it is late enough and I am beat. I better go! Thanks to all of you! A special thanks to Adrianne and Lisa for an absolutely fun evening!!!!!!!!!!! While Karrie slept we laughed and shared and ate Chipotle!!!!! Thanks girls!!!! I needed that!!!!
"I can do all things through Christ who strengthens me." Philippians 4:13
A neat poem sent by a friend:
The road to success is not straight. There is a curve called Failure, A loop called Confusion, Speed bumps called Friends, Red lights called Enemies, Caution lights called Family. You will have flats called Jobs. But, if you have a spare called Determination, An engine called Perseverance, Insurance called Faith, And a driver called Jesus, You will make it to a place called Success.
2-1-06 late Wednesday evening Here is the latest from our day:
Karrie's heart rate was in the 160 to 170 range 12:30 this morning. Concern about fluids or fever and stopped feed. We didn't sleep much with nurses and the resident in often. By 4:30am her heart rate had come down and no fever yet. Karrie awake 7am, but Mommy not ready for the day to begin. Karrie watching Barney by 7:30am while Mommy tried to sleep more. Karrie out of bed by 9am and diahrea beginning again. By mid morning Vicki arrived surprised to see her out of bed and feeling good. She said "She looks good!!!!" A plan for the day was set. She received albumin to help stop the capillary leak and get the fluid in the tissues back into her veins so it could be pushed out after lasics to make her urinate. That was the problem with high blood pressure yesterday and high heart rate overnight. Her stool culture was ok, so they started her on Imodium for the diahrea, which did help. She still had diahrea throughout the day, but it is a lot less. They changed her feed formula to a more tolerable kind and added a med to help move the feed through her system. Her hemoglobin has finally went down (8.8), so she received blood today. Her platelets are at 51, therefore, she will receive platelets tomorrow. Her white count is 200 and going down. Other counts like phosphorus and magnesium are down, but can be medicated for via IV. We played more Go Fish cards today, painted her toe nails again, played ball and bean bag game with the PT guy and Grandpa, too, took a walk or two, made pink goop (supposed to be play doh) in activity room, listened to Bo Bice's music, read books, napped good, and talked on the phone to Daddy and Steven. Mommy got to go for another walk outside on Case's campus and took a short nap. Karrie could be starting a fever. We moved her to the bed from the couch and she had the shivers under the hepafreezer (I mean hepafilter), but did not register the same or higher temp. So wait and see. Our nurses - Diane, Kathy, Deb, Leslie, Frank, Terry, Ronda, Cassandra, Cindy, Melanie, Phil, etc. - the past week have been wonderful!!!! The activity center staff - Christy and Jenny and others- have been so sweet and just love Karrie! We have had other wonderful people keeping Karrie active: PT, Kevin; music therapy; Alyssa; and Art lady, Barb. We are so thankful for all these people caring for our little princess and helping to make our stay bearable!!!!!!! We ask that you consider giving blood and/or specifically platelets. Karrie will be likely receiving many transfusions in the next several weeks. See the web site for info on how to give blood. We are forever grateful for your prayers as they continue to keep us going. And to be honest, people are amazed and we owe it all to God! I am starting to think that even the medical staff is amazed at Karrie and God deserves the credit!!! She is the testimony to the power of prayer!!! Continue to pray for Steven to be completely well by Friday! Also pray for Mark's mom, Bonnie, who is sick again and has not been able to come visit Karrie. Pray for Karrie to continue to have strength and that the fever will not come. Pray that her organs remain protected and that the diahrea will get under control. Pray for sleep for Mark and I and good decisions be made the next few days. Ok - time to shut down and get some much needed rest!!!! We love you!
1-31-06 late Tuesday evening Just wanted to let everyone know that the stem cell transplant/infusion went as expected. Daddy arrived at 10am without any weather or traffic trouble. Karrie was premedicated and playing Go Fish before. Scott and Tammy Provins joined us and Scott prayed over the stem cells before we started the procedure. Nurse Vicki started pushing them in via syringe into Karrie's central line just after 11am and they were all in within five minutes. I got to push a little, too, but Karrie didn't want to help. She sucked on a popsicle a little bit because of the bad taste from the preservative in the stem cells and cried some. After they were in she threw up which is normal and expected, but was fine after that and went back to playing Go Fish and having fun. She remained hooked up on a monitor for another six or seven hours. Her blood pressure was high due to the amount of fluids put into her for the transplant (meds, iv fluids, stem cells, etc.) They medicated her to get her to urinate, but that didn't work. Then they gave her blood pressure medicine and that worked. Karrie asked for a hot dog for lunch and ate only one bite after eating a peanut butter cracker. She received the Neupagen white blood cell growth med) about 3pm and we tried to nap. Karrie did not sleep, but Mark and I dozed. Karrie watched a handful of movies and wanted mashed potatoes for supper. She was unhooked from the monitor and headed out for a walk to the activity room to do a puzzle and play with a phone. Aunt Cyndi came to visit and played more Go Fish. Karrie also finished painting her finger nails. She did a nice job with a little help from Mommy! Daddy brought Karrie's pink microphone and player plus Bo Bice's CDs today. That was a great distraction when Daddy left for home and Karrie needed a washdown yet. She sang just like she did at home before this nasty chemo!!! Talked to Steven again tonight and he seemed to be doing better, but still a bit of a cough remains. I miss him so bad!!!! We sent home video of Karrie for him to see. Since our day began early with vomiting at 4:30am followed by diahrea at 5am, we chose to end the day in a similar fashion. Once in bed tonight and after receiving her meds, Karrie had diahrea and we had to change her pjs, too. They are planning to start her feed again tonight. They are not pushing to keep it running no matter what, so we will see how she reacts. We both could use a good night's rest, but I don't know that will be the case. She is expected to have white bloods cells in 10 to 12 days and until then the side effects from chemo will continue. Thank you so much for the prayers that covered every moment of our day!!!!!! We once again saw God's hand and continue to praise Him for each day He gets us through!!!! We have been so blessed! Thank you cleaning team for your work today!!! We have another praise after talking to Tricia, Taylor's mom. The pathology report from Taylor's tumor resection showed only dead tumor!!!!! Praise God! Taylor is back at Children's in Akron starting round six of chemo tonight. Please continue to pray for Taylor, Tricia, Jarrod, and their family. Well better get to bed! Thanks and we love you!!!!!!
1-30-06 late Monday evening Were you praying for Karrie today??? More specifically between 6 and 8pm tonight? Well, I want you to know that you were part of God's plan, a miracle in my eyes! You have received the answer to your prayers if you prayed about sickness and health! I am once again amazed!!!!! Karrie started out slow again today, but she would perk up for a bit and then ly back down again. The music therapy lady came and sang lots of songs to Karrie. However, she just laid there and didn't participate. Then Mommy and Karrie played Care Bear Go Fish and Karrie would sit for a bit and then ly down and then back up again. Nurse Vicki suspected a fever spike today and was surprised that no diahrea had happened yet. The capillary leak has started and her counts are low - except hemoglobin. Karrie gagged some in the early day, but no vomiting. They decided to run her feed continuous since she was not eating anymore. Her lips look bad, but her mouth seemed to not hurt much today. Grandma & Grandpa Richard came to visit and played some cards, too. The physical therapy guy came to play games with Karrie. He had a Dora ball and Flip Flop Faces (a bean bag game and a favorite that Aunt Laurie brings for the kids). She wanted Mommy to do the game, but eventually she started participating and soon was throwing her arms in the air and yelling when she made the bowl flip over. The ball was also a lot of fun. And the laughter coming from her was just wonderful to hear!!! After maybe an hour she got tired and nap came soon after, but diahrea had started along with a painful tummy! She slept while Mommy got to go out for a walk around Case's campus. It was cold, but very refreshing! By 4pm Karrie was up and more diahrea. I realized when I looked at her that she looked so sick and that it had been a nice long time since her last low counts and fever. After a short nap for me I noticed her shivering and she had 99.? at 6pm and 101.1F by 6:30pm. They gave her tylenol and started two antibiotics and cultured her stool. I had had such a feeling of peace today despite the sickness and I was so thankful. But the anxiety started when I thought about the long night ahead and being here by myself with her. The amazing part came when by 7:30pm she was on the phone with Daddy talking away and then asked to talk to Steven. Oh it was such a blessing to hear her talk to her brother - carry on an actual conversation. She has never talked to him while sick in the hospital. I hope it blessed him as much as it did me!!!! Took some coaxing for her to give up the phone - yes, it has started already! We played cards more and she is now receiving immunoglobulins which she was low on. They are in to take vitals every 15 minutes and she is not closing her eyes yet. That's our day in a nut shell! Now can you see the many times God was working throughout our day - energy, peace, joy, rest, strength, etc. You don't get those things on your own. God is the author of all blessings and for sure this miracle day. Thanks for being a part of our day as you prayed and God answered!!!!!!
Tomorrow is the stem cell transplant. It will take place between 10:30 and 11am. Pray for Mark traveling up in the morning and that the weather will not cause any delays or accidents. Pray for Karrie to not be nauseated and for the diahrea and fever to go away completely. Pray for her to be cheerful and feeling well as much as possible. Pray for my rest tonight and body aches. Pray for Steven to continue to sound better and get rid of his cough and cold. Thank you again prayer warriors!
God works for the good of those who love Him and are called according to His purpose. Romans 8:28
1-30-06 Monday We are still thankful and amazed at how God is keeping our little princess from getting terribly sick. He is so good!!! She is strong!!!!
I left off about Thursday evening before the dressing change. Well, we were stunned to find a bunch of green goop on the central line site. The nurse cultured that and did put a different dressing on with the part that needs to be removed every day to put on the ointment not touching her skin. We are thankful that both cultures from the site have come back negative and the last several days the site has looked very clean. Praise God! We finally got out to take our walk to the activity room and on our way we found Aunt Holly and Aunt Cindy coming in the door!!!! What good timing!! We colored a while in the activity room and visited with the little girl who I said last update reminded me of Taylor. Her name is Emily and her mom and Grandma were with her. Emily had a tumor at birth and was successfully removed with a 3% chance of it returning. Well, she is not quite two and it came back - on her spine going into her pelvis and this time it is malignant. Emily is on round four of chemo and they will do surgery next, I think. The tumor has shrunk down to a golf ball size. Praise God! The mom and Grandma are both teachers and were impressed by Karrie's coloring neatness at three years old. We returned to our room to visit with Holly and Cindy and have supper. Karrie poured a whole pack of goldfish crackers in her chicken noodle soup and then ate some of them. Cute! She had quite the attitude and was not very nice to anyone and only wanted Mommy when she needed something. That Chemo really makes her mean and cranky! She also had leg and foot pain that was helped by rubbing them. We were up for diaper changes throughout the night.
On Friday Karrie was a totally different child. She was quieter and not giving an attitude to anyone. She laid around all morning and said or did very little. She wasn't eating much either. Dr W and Vicki were glad to see that it was more then just water in those chemo bags. She had kept going and they expected her down sooner, I guess. Well, it didn't last long - the quietness and down time. She ate ok at lunch and perked up. She wanted to go to the activity room and so we did, but she lost steam once we got there and didn't last very long. Grandpa won a game and a prize for Karrie. She chose Hello Kitty finger nail polish or toe paints as she calls them. Then she took a three hour nap and was very pleasant and happy the rest of the evening while visiting with Daddy and Jan. Wow - different child compared to Wed and Thurs. She even did better with night diaper changes by the nurses aid, which allowed Mommy a better night's sleep!!!
We were both awake for a while around 5am on Saturday, but then back to sleep. Karrie wanted to stay in bed for the morning and she went back to sleep. Dr W was in and had expected a fever since she was down yesterday. But the perk up last night told her that it was just the chemo and not an infection starting. Dr W said Sunday would be a really good day and the side effects would hit after that. Karrie amazed me again and perked up to play cards and then to the activity room to paint for a long time. She was also very talkative. She did have a mucous throw up earlier and her NG tube came out of her nose - all the way out! So before nap late afternoon the nurses put another tube down her nose. They were amazed at her when she cried but then didn't even flinch. They checked her urine for an infection, but so far ok. Daddy and Aunt Cyndi came about supper time and Karrie didn't eat, but tried to play bubbles with Aunt Cyndi. It was Daddy's night to stay with Karrie. I chose not to go home since Steven was still coughing and my chances of catching it were very good. I stayed with Cyndi in Mentor and had a good night's rest despite some depression and sadness from missing my kids. Daddy and Karrie did fine as well.
Sunday morning waking to rain put me in a down mood because we'd hoped to get out and enjoy some fresh air. I relaxed most of the day and read a scrapbook magazine and made phone calls to Mark and others. Mark and Karrie took it easy also, but did take some walks around the floor with a stop in the activity room to read a book. Her counts are continuing down, except for the hemoglobin which seems to be holding steady. After Dr W was in Karrie finally admitted to mouth pain and that it hurt to talk. So they gave her a very low dose of morphine to take the edge off. She has continued to need it about every five hours. She has started to throw up mucous quite regularly and is not eating. I was glad to get back to the hospital and Karrie gave a little smirk when I talked with her. She also grinned a little when watching Steven on the video camera. Daddy headed home with Uncle Dave and Karrie told Mommy "I missed you!" How precious!!!!!!!!! Late nap and asleep most of the evening as well. Dr W is big on nutrition and keeping the gut working so those bacteria don't do something they shouldn't. Therefore, Karrie was started on a bolus of feed ran over two hours at a high rate. They want to try to let her eat and then run it after meals. We took a one round walk and then did a washdown. She wasn't happy about it - and never is when she doesn't feel good. She always wants Daddy, too, so I told her we would call Daddy and she could talk to him while getting washed. That worked out well. She was quiet at first and just listened to Daddy and Steven, too. Then after a while, she was quite talkative. Late bedtime and I decided to wait on the nurse to start her night time feed which runs at a slower rate over six hours. So now that is started, I need to hit the sack! My body is aching pretty bad!!!!
Keep those prayers coming! God is listening and answering! Karrie is definitely an example of the power of prayer!!!!!!!!! I hope someday she knows how awesome and powerful God is!!!! Thank you and Good night!!!!!!!!
"God answers prayer in the morning, God answers prayer at noon, God answers prayer in the evening, to keep our hearts in tune!" :)
This is a prayer sent to me from a good friend
Lord of the heaven and earth, encourage Karrie and the Dodez family to continue to seek after You and reach out to You, and find You because You are not far from them. Give them hope that You are with them so that the waters they are passing through will not sweep them away, and the fire they are walking through will not burn them. Living Word, make Your Word come alive to the Dodez family who is suffering. When their souls are weary with sorrow, strengthen them according to Your Word. Give them longing for Your precepts, and preserve their lives by them. Comfort them with Your promises. Use this affliction to bring them near to Your ways. Sustain them according to Your promise, and do not let their hopes be dashed. Give them a love for Your law, Lord, so they will have great peace and nothing will cause them to stumble. Loving Father, bring healing and wholeness to Karrie, wash sick from her body. Amen.
And the peace of God , which passeth all understanding, shall keep your hearts and minds through Jesus Christ!" Phillippians 4:7 1-26-06 Thursday
Chemo at Rainbow - If you really think about those two words, they give us very different reactions, feelings, emotions, etc. Chemo indicates much sickness and a rough journey for sometime, while Rainbow holds an abundance of promise and hope from our Creator. And no matter the journey, He will be there to help us. We have also been riding the Rainbow like a roller coaster - up and down. Karrie has started her mood swings usually based on how tired she is, and of course it has a lot to do with how the chemo is effecting her.
We finished out our time at home with a lot of emotion and "last time for a while" thoughts. Karrie had a first and a "last" when she told Mommy to go up to church for prayer on Sunday morning and she would be fine in her class. Mommy was hesitant, but did and Karrie did just fine! She told her teachers that she was ok and she wasn't going to cry. That was her last time in class for possibly up to a year since her immunocompromised status after transplant will keep her out of school and the like. Karrie has continued to sing and dance to Bo Bice's two songs, but now she has a pink microphone and Kareoke CD/Radio player. (Thank you Bell Microproducts!) I should have taken some photos to put on the website of her singing. It is so cute!!!! She would put down her new pillowcases as the stage and then sing away!!! Steven, Karrie, and Mommy enjoyed our last day at home with the kids getting along great AND we went outside to play. Oh, the Lord knew exactly what we needed! It felt so warm in the sunshine:-) A good start to a week that was going to place us inside for many weeks. We played many games of Candy Land, which has become Karrie's favorite game.
On Tuesday, January 24th we got Steven on the bus and headed to Rainbow about 9am. Karrie sang songs and watched for trains and cranes. We saw a cool orange and yellow engine and the two cranes in Cleveland were still there. Karrie pulled her princess suitcase in to the hospital and up to our room on the 2nd floor (410). We are thankful for a warm and spacious room! Karrie did well with the doctor and nurses. She warmed up to people we did not expect her to. We were off on our walk in no time. First stop - the activity room. She did play doh and then painted. She even told Mommy she could leave and come back later. The volunteers and staff in there are so wonderful! Lot's of play time and Karrie didn't miss a beat. We were wondering when the chemo, which started by 1:30pm, was going to hit her. We were expecting the worse, but were told day 3 is the worse. She ate good - pizza of course. All of her counts were good at the start including things like calcium, potassium, albumin, as well as her blood counts. She got very good at driving a car with a type of steering to it. She was still wanting to go do more at 9pm, but it was time for bed. She slept well all night despite every two hour diaper changes and a pump of one chemo drug that beeped and beeped!!!!!! Mommy didn't fair so well. I slept a couple one hour shots, but the beeping had me up hitting the call button 10 times in 30 minutes and then not for another hour again.
Wednesday included more videos, snacks waiting on meals to come, walks and painting. The pump continued to beep all morning and so they had to switch the next dose to a syringe pump from a bag. Thankfully, no more constant beeping, but they have to change the syringe every two hours. Grandma and Grandpa Richard came to visit and help. Karrie had begun to be mean if she was tired and didn't get her way. She wasn't too nice while Mommy left with Grandpa to get lunch. She had to wait too long for lunch, which didn't help and then nap time came early. The hourly diaper changes started again and during one diaper change she was so sweet - asleep she told me "Good night, Mommy!" over and over. We colored in the playroom after nap and waited for Daddy to arrive. It was a rough evening with a dressing change to her central line site. It had to be inspected by many since it didn't look normal with redness and crusty stuff. She was so tired by 7pm, but a wash down and another dressing change had to be done to put an antibiotic ointment on the site. She screamed so loud and long - it hurts to peel off the tape-like dressing cover. Great to be the Mom that has to inflict the pain on her sick child. Lots of tears for all of us last night. Steven is getting a bad cold and cried on the phone with Mommy because he misses us. He won't be allowed to visit until he is well again. And with being run down from lack of sleep and going home this weekend, Mommy hopes that she doesn't catch what Steven has. God protect us from sickness!!!! Our night was somewhat better with no constant beeping, however the diaper change and syringe change was every two hours. Mommy slept maybe an hour and a half about 4 different times.
A nurses aid tried to get me to get Karrie up this morning for a 7am weight check. Eventually it will be very important for health reasons to know Karrie's weight so they can medicate as needed, but I am not thrilled to wake a sleeping child to stand her on a scale. The main nurse told me that she needs it by 8am, so we've been given a little more time. It was suppose to be 5am. Can you believe that!?!? Karrie seemed to be ready to stay in bed all day and didn't eat much for breakfast. But that didn't last once she was dressed. We headed for the activity room and painted - finger painting, too! She has created some wonderful masterpieces!!!! I could tell that by 11ish she was starting to look tired. We visited with our minister and she did her own artsy stuff in our room until her lunch came. She ate very little before asking to go to sleep in bed. She was ready to go again after some sleep, but of course Mommy didn't get a nap with hourly diaper changes and such. So I am not doing this when I should be sleeping - ha! ha! Karrie has been up and watching Barney waiting impatiently for me to finish this. She is feeling very good and enjoying some chocolate pudding (Thanks Deb!) We do have a dressing change coming again soon. They want to keep an eye on the site and look at is daily, so we will be putting on a different dressing that hopefully won't hurt coming off.
We know the worse is ahead of us, but we are thankful that so far Karrie has been feeling pretty good and quite active. We do pray for no sickness here and for Steven to get well. We are grateful for your prayers and know that God is guiding us and giving us strength for each hour. As for our friends, we are a little out of touch with the Akron group. We do know that Taylor is doing well and won't start her 6th chemo for maybe another week. Please continue to pray for them and we will be meeting new friends to add to our prayer list eventually. There is a little girl here that reminded us of Taylor. Boy, do we miss Taylor and family, but so far everyone here has been very good to us!!!!
We love you! Praise God for His little miracles in your day! We have much to be thankful for despite our trial!
We received a call from Vicki, the nurse at Rainbow, today and we have been given an extra day at home. They are not able to do the stem cell infusion (transplant) on Monday, the 30th and will do it on Tuesday, the 31st. So we do not need to arrive for the chemo until Tuesday the 24th (4 days chemo and 3 days rest then transplant the next day.) We are very thankful for another day together with Karrie feeling good! However, we are scheduled people and were ready to move ahead. It takes a lot of mental planning as well. Anyway we ask for prayers for enjoying our additional time together and that we will be protected from sickness, snow storms, and Satan's plans. Thanks for praying and passing our updates on to others who will also pray! May we continue to remember that God is in control!!!!! A change in plans does not mess Him up at all!!!! 1-19-06 Thursday
We are praising God once again for another successful surgery and recovery. Karrie is doing fine today and has not complained of any pain. She was quite the amazing child yesterday as the surgery was delayed four hours because we thought running her tube feeding until 6 am was ok. They require at least eight hours, so that set our earliest time for 2pm. However, Taylor was to have her two to six hour resection surgery at 1:30. So they took Taylor first and her surgery also went well and was done in two hours. The remaining tumor and part of the liver was removed. Karrie played nonstop from 11am to 4pm and never asked for food or drink. She enjoyed Taylor's family, Aunt Cyndi, and the playhouse in the waiting area. The surgeon was not real positive about replacing a line that was working fine, but he said he would do it for us because he knew Rainbow would have someone do it. The surgery lasted about an hour and the surgeon was pleased with how it went. Karrie was in pain when we got to her in recovery, but within an hour or so she was walking on her own out to the van to go home. God has truly made an amazing child!!! And we were grateful to sleep in our own beds another night!!!!!
We continue to notice Karrie's hearing loss, but only because she asks what a lot more. But other than that, we are grateful to have a healthy, happy little lady. She loves Lucky Charms for breakfast, she cleaned her plate at lunch lately, and we have enjoyed our circle of four at the supper table! We had a fun visit to PRC on Tuesday where her and Steven played ball with several and were not bashful much with anyone. We also had a nice lunch at "Old MacDonald's" (McDonald's). She weighs 34.5 lbs and believe me you can tell when carrying her!!! Karrie loved a message her friend, Emma, had left yesterday and she has replayed the message over and over and over! Karrie insisted we call Emma this morning, but then Karrie wouldn't talk on the phone. However, the rest of the day she was on the real phone three times just chatting away with both Grandmas and Aunt Cyndi. What a hoot!
We have begun to look ahead to Monday more and more. Steven has said he is sad about Karrie and Mommy going to the hospital. But Mommy and Steven have planned a special time to talk each day and then time together on the weekend when Daddy stays with Karrie. Karrie seems to do ok talking about it and gets excited about coming home. She's not real sure about feeling sick again. But she has been very excited about certain people coming to visit and even staying with her. Karrie is also excited about her coming home party and has asked Grandma Richard for a Sleeping Beauty princess cake.
The days seem to be getting shorter and disappearing faster now that our ten days are almost over. We are cherishing every moment of home time and together time. We are holding up well thanks to our awesome God, your prayers, and everyone reaching out to us. We are excited to know about several prayer vigils being planned. Karrie is already an example of answered prayer and God's hand at work. So we know that your prayers will carry us through the months ahead. We anticipate arrival at Rainbow on Monday (23rd) about 10am and starting the high dose chemo around noon that day. It will run four days ending some time on Friday. She will have three days of rest and then the transplant will be done over a half hour or less sometime on Monday, January 30th. It is not a surgery, but just a syringe, or maybe several, full of the stem cells that are put back in via her central line. And then we wait and pray for those little stem cells to grow all the cells Karrie needs to survive!! So that in a nut shell is our next ten days. We know God has us in His hands and He will carry us through. God has a plan for Karrie and we anticipate our energizer bunny returning in the weeks ahead!!!!!!!!!!!!
Continue to pray for our friends: Taylor, Jonah, Megan, Gage, Samuel, Haley, Derek, Diamond, and Joey. Jonah has finished radiation and has hair again and is running wild and doing well. Joey is doing radiation at St Jude's. Megan is still improving, but still has several weeks before going home. Gage will have to have orthopedic surgery someday since the cancer was so bad in his leg bones. Haley had more inpatient chemo and is doing ok. And Taylor of course is recovering from her surgery. Please pray for their healing, strength, and energy, as well as peace and hope for their parents!!!!!! May each one of them experience God's miracles every day!!!!!
That's all for now. I will probably not update again until Monday or Tuesday depending on how things go. Please PRAY FOR KARRIE!!!! We love you!!! 1-14-06 Saturday Another long time away from the computer, but between my work by the commode and the many miles on the road this week (not to mention spending time as a family and sleeping), I have not had much time (or energy) to update. We endured the flu from early Monday morning until Tuesday - Steven, then me, then Mark. We shipped Karrie off to Grandma and Grandpa's as soon as Mark started feeling sick and they kept her all day while we slept and laid around. Steven bounced back quick, but drank orange juice (bad parents) at supper and lost his supper again that evening. Mark never did much, but felt awful. I had it the worse - both ends! Isn't that always the case for the mom, it seems! I kept telling myself that Karrie had it worse for the last six months with chemo and I only had to endure the flu for 36 hours. We were very thankful that her counts were good, she didn't get it, and we weren't doing transplant already!!!! Praise God! His hand was truly on her, because the Rainbow nurse told us that they checked her immunoglobins (sp?) and she does not have enough to fight off the flu. Thank you for praying for her protection from sickness! This is an appropriate place to share a thought for the day from January 9th:
God's ultimate will is unchanging, but the way in which he chooses
to realize this will is dependent on the prayers of his children.
He wants us as covenant partners, not as automons or slaves.
Karrie is still doing very well and has developed a typical 3 1/2 year old attitude! She yells at Steven more often then she plays nice with him and she's physically hurt him a couple times as well. We said she was tough, now we need to control it a little more. Steven and Karrie are truly opposites (like Mark and I). If there are two choices, Steven always picks one and Karrie always picks the other! She is a great helper!!! Mommy has enjoyed her new companion for folding clothes and cleaning anything. She loves dancing around the room (and Steven does, too) to Bo Bice's (American Idol) rock and roll songs. Karrie has begun to insist on dressing and undressing herself. It is a huge accomplishment that we had worked on last spring and early summer. So nice to see her stronger and healthier that she is doing things that other three year olds do. Here are some Karrie's life highlights from the last 10 days:
Sat on kitchen chairs with dolls and books while snacking, drinking, reading, and watching video while Mommy mopped the kitchen. Helped give herself her meds in her NG tube and then took her dolls to the hospital or doctor for an appointment. Opened another gift (anonymous giver) - Kelly 5 Barbie dolls with a school theme. She loves playing with them - thank you! Went to neighbor's for a Saturday morning and played with their doll house and watched Barney video. (Thanks Ronda!) Ate pizza and cake at CiCi's and then to Acres of Fun. (Steven's friend had a birthday party and we hung out, too! Thanks Landa!) Had snack in Sunday School class, but then wanted to sit upstairs in church with Daddy - well she chose to sit by Tina instead. Helped Steven and Mommy take ornaments off the Christmas tree. Sang songs (Up on the Housetop and Rudolph the Red Nosed Reindeer) while playing with Aunt Cindy in waiting room at Cleveland. Laid down on floor beside baby doll in doll bed trying to help her go to sleep. She even asked Mommy to close the blinds for baby. Kept Grandpa Richard busy with caring for boy doll, coloring, paper doll ponies, and videos while waiting for sedation at Cleveland. Woke from sedation and wanted cookies and orange pop after not eating for almost ten hours. Chose a Cinderella journal notebook from the prize closet and "writes" in it every day. Saw the cranes, trains, and airplanes on our travels in Cleveland and got very excited! She also saw an awesome rainbow!!! Chose a Crayola memo pad from the prize closet the second day. She's going to be a writer or a doctor someday?!?!? Hurt from the bone marrow aspiration done to her lower back area. She could not bend over or get down on the floor on her own. Had phone and purse in hand while playing dolls with cousin Lindsey. Reminded Mommy during bedtime prayers to pray for Taylor. Cleaned her whole plate - including carrots, grapes, cheese, and crackers - at lunch. Games, games and more games to play. Karrie likes her Care Bear cards and Candy Land best. Noticed the trees had no leaves and she was sad. Then she found and counted the three trees in our yard that still have leaves. Daddy asked for a hug and she wanted to do the hand shake first and then reluctantly gave a hug. Shrewd negotiator. Had too many stuffed animals on her bed so she sat one by each doll all over her room. Too many dolls or stuffed animals??? Then she had four stuffed animals on her bed and was allowed five. So she put five more on her bed. Went bowling with Steven, Daddy, Mommy, and Aunt Laurie. She even got a strike!!!! She whoooooo'd loudly and often!! Cute!
We are very thankful for our active little princess! It is so good to have her feeling great!!!!! As for the medical side of our last ten days, here are those details. We traveled to Cleveland three days this last week and she had a nuclear medicine injection and two MIBG scans which she was sedated for. This scan shows the neuroblastoma cells. Both MIBG scans came back clear!!!!!!!!!! PRAISE GOD!!!!! On Thursday she also got a new NG tube in her nose to tummy. We were very glad to get that old one out! Oh my, it was gross!!!!! They also took a bone marrow biopsy from her lower back area. And PRAISE GOD AGAIN, that also came back clear!!!!! Karrie's surgeon at Akron has scheduled her central line replacement for Wed., January 18th at noon. The whole procedure will take about 90 minutes and is an outpatient surgery. Our wonderful nurse for bone marrow transplants at Rainbow has given us until Monday, January 23rd to enjoy our family and life outside of the hospital!!!! So we will be heading to Rainbow early that morning to be admitted for the long stay. The high dose chemo will begin by noon that day and continue four days. This chemo will be ten times worse then any of the last six chemos. Karrie will then have three days of rest (time also to allow the chemo to empty from her system) and then the transplant will take place on the following Monday the 30th! The actual transplant will be a simple procedure of putting several syringes of stem cells in through her central line. Then we will wait and wait and wait. They expect her stem cells to engraft quickly because of her state of health and the amount of stem cells she collected. We will be praying for exactly that!!!!!
The continued response to our requests for help have been such a blessing!! Thank you so much for giving of yourselves to help us make it through this next segment of Karrie's treatment. Our journey will be long and tough, but we know with God's help provided through many of you, we will make it! God is so good!!!! A few people have offered to coordinate the cleaning efforts and they will be contacting you if you volunteered. Mark and I need to make a schedule of what days we will come and go and then we will be calling for drivers as needed. And the prayer vigils being planned will give us such comfort and strength during the next weeks!!! Suggested days for prayer vigils would be right before the high dose chemo starts on the 23rd, anytime during those four days, the weekend before the transplant on the 30th, and anytime during our wait which could last three to seven weeks. Thank you again for your efforts!!!
I believe prayers are being answered for Taylor and Megan as well. Taylor did run a fever last Sunday night and stayed in the hospital until Wed. Thankfully, for the first time she had no positive blood cultures!!! Tricia and Jarrod received good news that the stem cells collected from Taylor were clear of NG cells and that the CT scan showed a considerable reduction of the tumor!!! PRAISE GOD! Taylor will also be scheduled to have her surgery this next week. The surgeon will be removing the tumor and most of the liver since that is where the tumor is. Please pray for Taylor, Tricia, and Jarrod as this week will be a tough one with the MIBG scan also scheduled. We trust that God will be working for their good! As for Megan, we have not made a visit, but Tricia said she was drinking liquids - a first for months!!! I hope they will be going home soon! We also ask that you pray for Joey, a five year old who had a brain tumor return, but thankfully the surgeon removed it yesterday. They will be going to St Jude's for radiation next week. Please pray for Joey and his family who had gone through treatments and surgery 3 years ago and are now on that road again.
That's all for now! We covet your prayers! Thank you everyone!
Hello again after another week has gone by! Last time I updated we were moving closer to the year end and now it is already four days into the new year. We hope you all enjoyed safe and fun celebrations. We took in some bowling with friends and then some food and games, too. Karrie was happy to stay with Grandma and Grandpa Richard for the evening. And we were happy to give Karrie her last dose of antibiotic as the new year got underway! I have much to share this time so please get yourself a cup of your favorite beverage and put your feet up - or at least come back to this several times through out your busy day(s).
Karrie is doing very well! She has slowly lost all her fuzzy head, but you wouldn't know she was a cancer kid by her energy level. She is constantly doing something. (Wow, does that sound like Mommy!) She is quite the little helper!!! One day she helped Mommy clean a bathroom and another day she helped take down Christmas cards. She is becoming self sufficient, too - wanting to take off her own shoes and clothes. Her playtime consists of wearing her princess heels and taking care of her baby dolls. She's also still pushing Steven's buttons by copying him or doing exactly what he doesn't want her to do. We are also enjoying more books and coloring, too. Plus, the new Care Bears cards have become her favorite games to play. She is very talkative and loves the phone. It's quite a blessing if you are on the other end! The Rainbow oncologist and nurse were amazed at the difference in Karrie from August when she was under their care to now. They couldn't believe how healthy and happy she is, and of course very busy, talkative, and lively! The doctor commented that her feeling good is the best indication of how well she is doing after all she has been through. Her weight is also much improved. We began this process in July 2005 when she was about 33 pounds. She'd lost significantly in July and August, rebounded, and up and down the last four months. This week she was 34.1 pounds! That is the best she has been! The night feeds continue and she still eats bites here and there, but the last two nights at supper she has almost cleaned her plate!!!
Our trips to Cleveland the last two weeks have been long travelwise as well as hospital time spent. On the 28th we had to be there at 9am and didn't head home until after 3pm. The day included an injection and then blood draws three times every five minutes and then we returned three hours later to do three blood draws every 45 minutes. In between there Karrie had her echocardiogram and EKG done. The stickers they put all over her chest were the worse part of those tests. She cried so much while they were put on and pulled off!!!!! Since Mommy and Daddy were both there, she cried "I want my Steven!"" How precious! On the 29th we reported to the sedation unit about 12:30 and she received some red koolaid stuff in her NG tube and also a nuclear medicine injection in her central line. She was put to sleep in my arms and they did a CT scan and a PET scan. The CT or CAT scan was uneventful. We even got to meet briefly with the nurse (Vicki) we worked with in August and will also work with for the BMT. She told us Karrie's counts were all good except for the hemoglobin (8.0). We also found out that her central line may need replaced since she had had two infections in it since it was put in in July. The PET scan involves cells taking up a sugar and where this happens are active cell areas like tumors. It is not specific like the MIBG scan that we do next week. Karrie came out of anesthesia well and was her usual self in no time. We headed homeward about 5pm, stopping at Akron to see Taylor, who was receiving round #5 of chemo. She was doing well, but still confined to her room because of a virus she has. We also saw Shelly, Megan's mom, and Megan is improving. They hope to go home in the next couple weeks or so. A praise - no doubt! We did find out that Gage was in over Christmas with a bad infection that brought him in with 105 temp that they had a hard time breaking. He is doing better. Jonah was also in with an infection, but he was also improving.
Yesterday we took another road trip to University Hospitals for a 10:30 hearing test. Karrie played a game where if she heard a beep she hit a sticker on a button that released an M n M to her. She liked that and seemed to do ok. However, the results were not good this time. She has lost some ability to hear high frequency sounds. If they are turned up she is then able to hear them. So far the low and normal frequencies have not been effected. They are not surprised by this. The one chemo drug, as well as the antibiotic she had just been on, is known to cause hearing loss and it is rather typical for NB patients to need hearing aids at some point. Karrie had a good time with Aunt Cindy who kept her entertained through lunch and after. We then met with Dr Wiersma, oncologist and bone marrow transplant doctor, and Vicki, nurse practitioner for BMT, at 1pm. The doctor was very good at explaining everything in phases and I'll try to cover it all here. Basically, the CT scan shows a residual tumor the size of half a finger located on the main artery (IVC). It is what the surgeon left because he could not remove it without damaging the artery. It has some calcification like the old tumor, but we do not know for sure if it is active tumor or not. The PET scan showed no activity there and the MIBG may not show activity because that scan doesn't show very small areas like this one. The pathologist report did say that the removed tumor was dead or mature gangleum (sp?) So we may never know for sure if what is left is active or not, unless it is allowed to grow, which it won't be with the high dose chemo and radiation hitting it soon. Dr W did say that Karrie is classified as very good partial response to the treatment thus far. Anything better would be called complete remission, but they don't often see that at this point with NB. Lesser classifications would be partial response or no response. Karrie has responded well to the chemo and she is definitely doing well and this is the best it could be. Her survival chances have improved but not to 50/50 yet either, but better than 25 to 30%. If you remember, Karrie did not have any neuroblastoma cells in her bone marrow. Dr W said that 75 to 80% of the NB group does have bone marrow involvement. We also talked about her kidneys. And another praise came!!! Her kidneys are operating at 100%. The chemo drugs could have done much damage to them and so far her kidneys have been protected!!! However, that is a bittersweet thing because now she will receive the full dose of the bad chemo drug during the high dose chemo. The full dose is needed to kill the NB cells, but it could also damage her kidneys this time. The high dose chemo was explained as being ten times the doses of the chemo drugs she received during each of the first six treatments. Karrie is going to have to have her central line replaced prior to transplant. They said the infection she had is easier to cover up then to get rid of and they don't want it coming back out when her counts are low or when she is really sick and would not do well in surgery. Dr W said we could use Dr McCollum at Akron and would set up an outpatient surgery with him in the next two weeks. They also told us that they are not closing the floor completely to age 12 and under. They will allow us to set up a 2 hour time slot once a week for Steven (if healthy) to come see Karrie. He must be healthy, be checked by the nurse upon entrance, and he must stay in her room the whole time. So they won't be apart for weeks and weeks as long as he stays healthy!!!
The rest of our time was spent talking about radiation and then also additional treatments after that. Karrie will receive radiation most likely to just the tumor bed (the other bone areas were clear in October.) This will take place not 4 to 6 weeks after the transplant stay, but 4 to 6 weeks from the day of transplant which will be called day zero. So between day 28 and 42 Karrie will be starting radiation. Her ANC will need to be coming up, but she will not have platelet recovery yet. She may or may not be home from the hospital, but they expect she will be by then. After radiation Karrie will begin taking acutane which differentiates and changes any NB cells left to benign cells. We were also informed of another treatment that we may want to consider that involves an antibody that will latch on to the NB cells and when the immune system is rev'd up, the body will kill that cell when it sees the antibody attached to it. This treatment has been used on NB patients whose cancer has come back and it seems to have worked well for them. Now it is part of a study to use on NB patients at about 60 days post transplant. If we choose to do the study it would still be a 50/50 chance of actually receiving the antibody because Karrie would be randomized, so she may or may not receive it - 50% do and 50% do not. The treatment is very toxic and would require hospitalization again for about six months off and on. We are obviously lifting this in prayer since we do not know if it is the right thing for Karrie. She has responded so well with chemo, why put her through more? But then again, will it be the thing that keeps the NB from coming back? Once we get to the end of treatment Karrie will be watched for 2 to 3 years when the biggest chance of the NB returning could happen. We did hear of a recent case that the NB did return after 7 1/2 years. So our faith and belief that God has healed her will have to carry us for many many years. Karrie's counts were checked again and her WBC and platelets continued to improve, while her hemoglobin went down. We did not get a chance to ask many of our questions from the BIG BMT notebook we were given to read. It was 4pm and time to hit the road for home. Thank you Aunt Cindy for being there to ask questions, listen, and also entertain our little princess especially on the road!!!! She remembered to sing the same songs today!!!
Today we returned to UH for a blood transfusion at 11am. For little Karrie this takes three hours to receive the bag of blood. They said we would probably notice an increase in energy. An increase?!?!?!? Karrie has already been the energizer bunny. She did maybe get a little more color and didn't miss a beat the whole time, literally. She enjoyed the music therapist coming in with a guitar and then drums. We sang a bunch of songs. We kept her busy, or should I say, she kept us busy with books, cards, baby Emma, videos, etc. She was the big girl with her 12 oz grape soda and a hotdog for lunch. We also met with Vicki again to answer some questions from the BIG BMT notebook. Karrie's heart tests were all good. Vicki seems to be a little more sensible than Akron was on planning chemo so we are not up all night doing ins and outs. Visitors will be allowed as long as they are not sick. It is not complete isolation, but we ask that you are very sure of no sickness in your household before you come visit us, especially when Karrie's counts are nothing. She will not be allowed any fresh fruit except bananas. And yes, we will need to get her up between 4 and 7 am to weigh her. That is crazy, yet important for the ins and outs measured. Vicki also kept using the example of us being admitted early the week of January 16th and then her transplant day would be actually a week later. We were hoping to have that last week at home without all the running to Cleveland. We'll see how it all works out. Next we headed to radiology to meet with Dr Kinsella who will head up her radiation treatments in late February or early March. We will do three planning sessions (3 days) and then 12 treatments over 12 consecutive days not including weekends. He showed us the comparison CT scans from July and December. Amazing - the difference!!!!!. That tumor was so huge!!!! Karrie will be under anesthesia for each treatment since for her age the likelihood of her holding still is not good. We also were surprised to find out that the radiologist, Dr Kinsella, is the oncologist, Dr Wiersma's husband. What a hoot! It's a small world. They do have a nine year old daughter that loves American Doll. Interesting how we found out more from Dr Kinsella meeting him for only an hour, while we knew nothing of Dr Wiersma's life outside of the hospital after meeting with her much much more. After 5pm we finally got on the rush hour road home.
Now after all that, do you want to hear anymore? Probably not a wise time to choose to ask for help! If I were a commercial I may have lost the majority of my audience by now. Sorry! And yes, it is taking me way too long to type all this. It is now midnight and I started before 10pm. Oh well! It should take me a long time to type it if it is going to take you a long time to read it! Fair is fair! I will try to make this short (and sweet - I need chocolate! No really! I do not need any!!!) We have several requests for our next hospitalization. First, we would like to ask for churches to organize prayer vigils (24 hours where time slots are filled with someone always praying). If you would like to do this, please let me know so I can update you on specific days of needed prayer (days before hospital, high dose chemo, transplant, rest days, counts dropping, no counts, etc.) Second, I am asking for cleaning help for at least the next two months starting within the next week or so. This would include but not be limited to sweeping, mopping, dusting, bathrooms, and kitchen. My time at home will be limited and I must give the majority of my time here to sleep and Steven - I cannot be concerned with cleaning my house. (And that is a big deal to me.) I am hoping that those who do volunteer would be willing to use our cleaning products from Shaklee as they are better environmentally, as well as for Karrie when she returns home. We have also been told that the house needs to be very clean when she returns home, so I may need a big crew to take on some extra cleaning duties that only get done once a year, if ever - ha! ha! - carpet cleaning, dust all areas, wipe down walls, etc. Third, we have requested face time now, but we will also be needing that while at the hospital. We are not sure how Karrie will do with others especially if she is not well, so we may have to see how this goes. Also we do not know how much sleep we will get at night, so nap time (1:30 to 5pm) may be very sacred. Fourth, we will need drivers for both Mark and I depending on when we come and go. I will hopefully get home at least once a week and if I'm coming home at night when I haven't had much sleep for nights and days, I will not be able to drive myself. And Mark would have a long drive home alone if he didn't have one of you with him. We will be calling once we know our needs for this. Our co-workers are taking care of meals this month and we are so grateful! We may need help there again come February or March. And lastly, the gifts have been such a blessing! We are so grateful! We do ask though with Christmas just past, that gifts for the kids be slowed down a bit. We actually have several we have not allowed them to open yet, because it is too overwhelming with all they have already received in such a short time. If you desire deeply to give a gift, please drop us an e-mail and maybe we could direct your gift a little. We have some hospital stay needs that maybe you could help with. We don't want to take the blessing away from those of you that give with such a wonderful heart, but we do need your help in not overloading the kids with more than what they need.
And now we ask for prayer and sleep! From all you have read, you can see the areas where prayer is needed. We thank you for taking the time to read and now to pray! May God hear and answer every prayer you lift to Him. Also remember our other NB friends: Taylor, Megan, Jonah, and Gage, and other cancer friends: Haley, Derek, and Diamond. We will make it through the months ahead, but only with God and each of you beside us! Thanks for listening!!!!!
"Be joyful in hope, patient in affliction, faithful in prayer." Romans 12:12