December 29th, 2010-4th round of chemo part 1   4 comments

Amy and Charlotte (with just one suitcase in tow) arrived at the hospital yesterday morning for labs to confirm Charlotte’s numbers were ready for chemo.  Fortunately (and sadly) Charlotte is getting more comfortable with her port being accessed.  Amy and the RN were able to handle this task themselves (it used to take up to 5 people) and although there were still tears, Charlotte stopped crying before the needle was taped into place.  Afterward she clarified with Amy that there would not be any “big pokes.”  She has often asked about “big” pokes vs getting a “little” poke and Amy and I have not known how to answer as we haven’t been sure what she means by these different pokes.  Amy took this opportunity to ask Charlotte what kind of poke she just received and Charlotte said it was a “little” poke.  Amy happily informed Charlotte that she definitely was not getting any big pokes today.  Charlotte was happy, but it keeps us wondering what a big poke is in her mind.  After hanging out at the clinic for about 45 more minutes, Charlotte was cleared to be admitted.

Charlotte again was very happy to see everyone and anxious to get playing.  With this being Charlotte’s 4th time back, everyone knows her.  It’s no longer just her direct nurses that welcome us or interact with her.  As Charlotte walks down the halls, she is greeted with big smiles from the nurses, unit secretaries, nursing assistants, doctors/residents, cleaning staff, volunteers, and other families.  This place has really become a second home to us.

Chemo began at about 5:30pm.  This “milder” round includes the high dose Ara-C every 12 hours (for a total of 4 doses).  After the 4th dose, Charlotte will receive a second chemo drug via a shot 3 hours after the Ara-C is completed.  She then needs to be monitored for one hour for any reactions and then she is free to go home with an EpiPen.  So hopefully Charlotte will be discharged by Thursday afternoon.  She also is getting eye drops every 4 hours again and we’ll have to continue those for one day at home.

So far Charlotte is doing very well.  She slept well last night although she seemed a bit restless at times.  The chemo is already affecting her appetite as she is not very hungry today, but she has been doing a great job drinking milk this round.  Her activity level has also been high, but she needs occasional breaks of being carried in the halls or sitting on a lap. But these rests are short and she is active again.  I was able to visit with Charlotte and Amy today during lunch and Charlotte had me walking the halls too.

Amy spoke with Dr. Desantes about the status of the transplant.  He clarified that actually both the first and second donors declined to give bone marrow, so we are actually awaiting the typing results from donor 3 and 4 (who we definitely know are perfect matches and are willing to donate bone marrow).  We again are thrilled that Charlotte has been blessed with so many potential donors, and hope this is God’s way of matching Charlotte with the very best donor.  He estimates the transplant to actually take place the second or third week in February, but we are hoping he is just being extra cautious about the timeline and we can maybe start the process sooner.  There is still some discussion to be had about whether or not Charlotte will be able to keep her port for the transplant (with the addition of a PICC line in her arm) or if she will have surgery to remove the port and have a Hickman inserted instead.  Amy and I still aren’t sure what we want for Charlotte, but additional surgery never is a choice a parent wants.  They just want to make sure she has enough “lines” or access points to administer all of the chemo/meds/antibiotics and possible nutrition she will need during transplant and her one port cannot do it all.  When we return on January 4th (for the second half of round 4) we will begin the more detailed talks about the transplant, so we’ll know the answer to this question then.

Dr. Diamond also visited Amy today.  Her presence again gave Amy comfort.  Amy informed Dr. Diamond that we both are now feeling a lot more comfortable about the thought of transplant….it’s just the final outcome that still worries us – that we obviously want the transplant to work and for Charlotte to be cancer free.  Dr. Diamond responded (with her smile), “That’s the hope of all of us and the odds are in her favor.”  Amy and I have often felt the 60% prognosis was not high enough for our liking, but to hear it put in terms of “the odds being in her favor” seemed a much nicer and more optimistic way to look at it.  And Dr. Diamond again stated that she was never going to ask us to put Charlotte through something like transplant if she didn’t feel it beneficial or something that she would not do with her own child.  So once again….thank you Dr. Diamond for giving us hope and the strength we need to continue.

Posted December 29, 2010 by L. Elske in Uncategorized

4 responses to “December 29th, 2010-4th round of chemo part 1

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  1. What an amazing little girl you have, so content and strong, jumping right back into the hospital routine! I think Charlotte’s got ALL the strength to get ALL OF US through this next part in the journey. Looking forward to hearing that match 3 or 4 has been chosen and the transplant is a GO. Keep up the great work Lon & Amy! Your strength, love and resilience have brought you this far. You have 2 little girls that are doing very well because they have great parents in you. 🙂

  2. It is so reassuring to have Dr. Diamond in your corner and definitely a comfort to all of you during this process. Charlotte is such a big girl and brave .Some day you will look back and wonder how you handled everything . Auntie Mary

  3. 1. Charlotte is a true fighter.
    2. Charlotte is lucky to have Dr. Diamond and all the hospital staff helping her.
    3. Charlotte is blessed with outstanding parents, grandparents, aunts, uncles, cousins and lots of friends providing heaps of support.
    4. Charlotte is an awesome little girl.

  4. We are praying for your family daily. I love working with your grandma Jean. Linda

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