March 10th, 2011. Day -1   24 comments

Charlotte had a long and tough night.  She spent the entire night in Amy’s arms in the recliner with a cold rag on her head.  No matter what we did, we could not get her temperature below 102.  She was given a

larger dose of tylenol but even that only took her fever down from 103.5 to the 102 range.  She started with diarrhea about 4am.  Again at 6am and then at 8.  So between the fevers and her body aches and the new bottom problems, she had it pretty rough.

We all slept until about 9 and didn’t bother with ordering any breakfast for her because she told us a dozen times that she wasn’t hungry.  Her temperatures started getting back to the 100, 99 ranges.  We were able to unhook her from tubies at 10am so we gave her a little bath which she hated.  This is not normal for her.  She usually loves baths and could easily spend an hour or more in one.   But her port was accessed so we had to wrap up her chest and left arm so she quickly got irritated and was not interested.  All of the lotion we were applying to her bottom started coming off in the tub and she was not pleased with how things were going.  So the bath was over pretty quickly, but we did manage to get her bottom soaked a little bit.

Toward the end of the morning her temperatures started getting back to the 97-98 area and her pulse levels also returned to normal,  and she was starting to want to spend a little time playing and her mood improved.  She started with a little rash on her wrist and the doctors quickly looked at it and attributed it to the ATG.  So they gave her a little more benadryl and it cleared up by the afternoon.  She also was standing up and looking out the window and playing when they got in to check on her so they right away mentioned how she looked so much better.  We also noticed a change in her diaper area.  It was starting to look a little less red and sore so we hoped that she wouldn’t feel so much pain in future changes.  She did have another diarrhea diaper at around noon but she was happier during the changing process.  She was happy to play and hang out until we put her down for a nap at 2pm.  She slept restfully until Mommy and I woke her up at 5:30 to change another loose diaper.  Once she got fully awake, she was happy and playful.  Her temperature remained in the normal range and she even ate a pretty good dinner.  Not as much as she used to eat in a meal, but certainly more than she has eaten in all of the last 48 hours.

New March 10th tubies. Complete with antibiotics!

So far, all of the rest of her cultures remain negative.  There was another set taken at 9pm tonight.  We hope these are the last ones for a little bit.  The doctors are now thinking that this all was just a reaction to either the chemo or the ATG or a combination of both.  Fevers, body aches and diarrhea are common side effects of each.  We did hear in rounds late this morning that her phosphate levels were quite low so they added some to her daily IV fluids.  We hope that that clears it up.  Her CBC results today are: white blood cell count is down to 2.0.  The doctors expect it to get down to .1 in the next days/weeks in order for the new marrow to engraft.  Her platelets are now at 65k, and neutrophils are still hovering around 1800.  Her hemoglobin levels are down to 9.0 so she will likely need a blood and platelet transfusion in the next few days.  Over the next few weeks, this is going to be a common occurrence as her marrow dies off from the chemo.

The transplant coordinator heard from the donor site this morning that the marrow should arrive at the AFCH by 10:30 tonight.  After the doctors take a look at it and count cells, and do their stuff, they anticipate it should be ready to be transfused into Charlotte by 1pm.  Amy and I are not sure if that meant that the donor had already given and the marrow was enroute, or if that is just the schedule for the day.  I am hoping that we would have heard by now if it were somehow delayed, but we will just feel a little more relaxed if we knew it was here.  The transfusion itself is pretty non-eventful.  It arrives in a bag similar to blood and platelets and is given to her via IV.  The new marrow makes its way to her bone and start to engraft.  We should start to see signs of engraftment (usually the white blood cell count goes from .0 to .1 or from .1 to .2 depending on how low it gets)  from Day +7 though Day +21.  Tomorrow is Day 0.  Day 0 of her new cancer free life.

Thank you to all of you for your prayers and thoughts.  Your comments mean the world to us and we couldn’t do this without all of your love and support.

Praying for a good day tomorrow.

Posted March 10, 2011 by L. Elske in Uncategorized

24 responses to “March 10th, 2011. Day -1

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  1. Praying often.. and trusting God for Charlotte.. bs strong! xo

  2. Stay strong. Praying for a better day tomorrow. Give CJ lots of hugs!

  3. Thinking and praying for all of you as well as the donor who so graciously will help Charlotte to be our healthy little one. Hope her bottom starts to feel better soon. We know it is no fun to feel like the flu .Keep the faith. Auntie Mary

  4. We’ll be thinking and praying for all of you all day today and in the days to come. Charlotte is such a beautiful little girl and will beat this horrid disease. She’s gone through so much and has been such a trooper. Hopefully everything is downhill from here-on in.

  5. Thinking of you all on transplant day, as well as the generous donor. Know that there are OOOODLES of people praying for Charlotte and sending our love and support to your whole family.

  6. Many prayers for Charlotte and her donor today. We will be thinking of you today.

    Auntie Sharon & Uncle Dean
  7. ❤ Happy Re-Birthday Charlotte ❤ Thinking about you all day – everyday!

  8. Your strength continues to amaze us! I hope she feels better today. Welcome to day 0 of her new cancer free life!

  9. Many, many prayers and positive thoughts being sent to all of you. Thinking about all of you every day.

  10. Sending many, many positive thoughts today for Charlotte, hoping that transplant day goes well. Keep strong Amy and Lon! Praying for you all.

  11. As I read this, it is about 4 hours from transplant. May all go well and as scheduled. May God work his wonderous miracles in your lives.

  12. Thinking of you guys! We are in absolute awe of how strong you guys have been through all of this and what a strong little trooper your beautiful Charlotte is! We will be continuing to follow Charlotte’s journey via this wonderful blog while hoping and praying for the best all along the way.

    Nikki and Patrick
  13. We will say extra prayers for you all today.

    Jim & Bunny Gitter
  14. I am thinking about you all, please be well and strong!

  15. Lon and Amy,
    My heart goes out to you both. May God give you strength and faith as you begin your next journey with Charlotte. I have been keeping tabs on your family from time to time as Chris sent me your link. Haven’t known what to say up until this point, but know I have been thinking of your precious little girl and your family.
    With many prayers,
    Marie

  16. We’re praying for Charolette today!

    Darren & Vicki Weinberger
  17. All of you are in our prayers for God’s Blessings and strength to see you through this special day. Give Charlotte a big hug from us! Lot’s of love from Tennessee…

    Aunt Cyndee & Uncle Earl

  18. Charlotte was my first prayer of the morning. That will not be the last. Many good thoughts coming your way today.

  19. Sending hugs and love and prayers for you and Charlotte. May God wrap you in his loving arms and hold you close, surround you with care and give you stength. I love you!!
    Mary B

  20. Prayers, love, hugs and only positive thoughts for today’s transplant of miracles.

  21. Thoughts and prayers to you Elske’s.

    Patrick & Kristin Vander Sanden
  22. Thank you God for this day, for keeping Charlotte healthy for transplant and for the selfless gift her bone marrow donor has given. Today is a GREAT day! We love you all and continue to pray that this transplant will be Charlotte’s cure.

  23. at 1:20pm…we’re thinking of you and hoping its time to say “Happy Birthday!”

  24. Lon and Amy,
    Our prayers are with you.
    May God surround you with His Love and give you everything you need.
    We love you.
    Bill and Mary

    Mary and Bill Kirchberg

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