November 30th, 2010-good news and bad news   7 comments

Yet another tough day for Charlotte.  Her attitude and energy level were still hampered by the effects of the chemo.  Her appetite and thirst are still not up to where we would like them to be, but she does seem to be trying.  She wanted to be pushed around in the stroller most of the day (mostly by Mommy), and was ready for an early nap by noon.  It was very unlike her to not want to play with any of the grandparents who came to visit her.  But when she awoke, she seemed like her normal self again for about an hour.  She was jumping up and down, climbing on the couch to look outside, and even walked to the playroom on her own.  This made Mommy especially happy since the doctors requested an OT consult today because of how little Charlotte wanted to walk on her own lately.  Mommy defended Charlotte stating that she was just tired, but regardless, she will have another visit from the OT later in the week to continue assessing her.   By the time chemo started again at 4pm Charlotte was again tuckered out and I arrived back to the hospital for the second time in two days to hear Charlotte crying as I walked to her room.  She has not been enjoying the eye drops she must receive every 2 hours and I seem to plan my arrival at the same time they are being administered.    It was more stroller/hall time until about 8:00 when she was able to be unhooked for the night again.  She squeaked another carton of milk in during the last hour to keep away the nightly IV fluids.  After she was free from her tubies, she seemed in a little better mood again and was ready for bed by 8:30.

As we expected, between yesterday and today, we received some news from the recent tests that have been done.  I am still considering all of this information unofficial because we haven’t heard these results directly from Charlotte’s doctor, but the weekly attending physician told us late yesterday afternoon that Charlotte’s biopsy aspirate results had come in.  He said there were 7% blasts, but most of those appeared to be good healthy cells.  When Amy asked about a specific leukemia cell count, she was told by the resident, less than 1%.  So if those results are final, then we consider Charlotte’s round two of chemo to be a large success.  Dr Diamond had told us that she would have been happy with the same results after round 1 (4%) again so for her leukemia to continue to go down after another round of treatment we think is very promising.

However, the doctor stopped by tonight and told us that he had heard through the grapevine (so again, the results are not official), that Molly’s HLA Type tests were back and she is not a match for Charlotte.  This means that we won’t be able to use the umbilical cord blood from Molly to transplant stem cells into Charlotte to regrow healthy, non-leukemic cells.  Needless to say, we consider this a pretty big blow to our treatment plan and Amy and I are pretty upset.  There was only a 25% chance of her being a match, but we had continuously thought that the timing of Molly’s birth was too close to Charlotte’s diagnosis and treatment schedule for it not to be our own little miracle.  We were both pretty certain that this was going to be a nice example of how His plan would come together for us in this otherwise uncertain time.   The doctors have already begun to search for an unrelated bone marrow donor (and currently have asked 2 individuals to come in for further testing) and if the correct one is found and willing, we believe the plan would be to transplant the donated marrow into Charlotte in the beginning of 2011.  The process to properly test a potential donor for all HLA combinations can take weeks so we are not sure what or when the next step would be.

But to end on another positive note, tonight is Charlotte’s last dose of chemo this round (technically 4am Wednesday morning).  So that means Wednesday will be her last day receiving the steroid and the eye drops.  Although it sounds ironic, we hope to see Charlotte’s mood and activity level improve as her numbers drop.

We ask you all to continue to keep Charlotte in your prayers.  And we would again like to remind you to consider becoming a bone marrow donor.  You might not be able to help Charlotte directly, but you may be able to save somebody else’s Charlotte.

Posted November 30, 2010 by L. Elske in Uncategorized

7 responses to “November 30th, 2010-good news and bad news

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  1. I’m glad to hear Charlotte’s numbers are good, but I’m so disappointed for all of you that Molly doesn’t look to be a match. I’m so sorry.

  2. Wow… we all share in your disappointment that Molly is not a match. However, having two people as possible matches provides a bright light to the situation. Our fingers are blue… being crossed for so long! NESCO sends a big rockin’ HUG!

  3. Keep your spirits up kids something good will come along.
    Prayers are with you.

    Joe & Sue Kaminski
  4. Round #3 is now done, and prayers will continue for Charlotte and for little miracles 🙂 We love you guys

  5. Glad # 3 is behind you and praying that each day brings some bright spots in your days and Charlotte will be her active self soon,Molly is precious and looks like she is growing already.

  6. I just sent in my donor kit yesterday. It was very simple and I’m ready to help out someone elses Charlotte.

  7. Hang in there. I am so thinking about you and hoping for the best. Sending a hug and lots of positive energy for strength in the days ahead.

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