October 21st, 2010   5 comments

Charlotte’s first night of chemo went pretty well last night.  She was again a trooper and was able to sleep through most of it and by about 4am she was able to finish the remainder of the night tubie free.  There was about an hour during the night that she was up due to many factors (very wet diaper, chemo ending, her wanting milk), but she was in a good mood and happily went back to sleep eventually.  She treated Mommy to sleeping in until 8am and only woke because room service knocked on the door.  Although she was excited to eat, Mommy could notice a much decreased appetite.  But that did not stop Charlotte from wanting to get started walking the halls!  And since her chemo was done until 3pm this afternoon, that met she got to be tubie free for a good part of her waking day.

We confirmed today that Charlotte is allowed to leave the locked unit while she is not neutropenic and not actively hooked up to any chemo.  So we have decided this round to let her do this too.  We had shied away from it last time not wanting to confuse her, but because she is so active and she knows the current halls so well, we’ve decided to treat her to one more hallway to explore at least for a little while.  And wow was she excited to do this today!!!!  She was so happy looking at new artwork and decorations on the floor.  Mommy, Charlotte, and G’ma and G’pa Elske spent much of the morning out in the new hallway exploring and playing hide and seek.  Besides a slightly decreased appetite, Charlotte was a little more tired than usual today.  She desperately wanted to be out of her room, yet needed to be carried or ride in the wagon to get some breaks.

Our once very quiet and shy little girl is becoming quite the social butterfly.  She happily finds a new toy in the playroom to take on our hallway walks and is eager to show her new possession to every staff member whether she knows them or not.  She simply walks into the nurse’s station and shows off her prize.  And if she doesn’t know their name, she is sure to ask them.  She was extremely happy to see Katy (her primary nurse) today whom we haven’t seen since our previous admission.  Mommy wishes she had had the camera handy at the time of their initial greeting….it was quite adorable to see both of their faces at seeing each other again!  Charlotte is also getting quite savvy with her medical information.  When her chemo beeps (indicating it’s done or there is a problem in the line), she immediately stops what she is doing and says “Go find nurse, fix it, stop beeping.”  Today she tried to copy Mommy and Daddy by trying to find the “silence” button herself to temporarily stop the beeping until a nurse can be found.  She also can identify doctors completing “rounds” and has impressed the staff by correctly telling them when rounds is occurring.  We think we may have a future nurse or doctor on our hands 🙂

Now that we know that Charlotte is in remission, we have had many questions for Dr. Diamond as for what the next steps of Charlotte’s treatment will be.  Amy was able to ask many of these questions today.  If our new baby is a match, Dr. Diamond states that it is the standard of care that Charlotte would immediately receive the stem cell transplant (probably in January) to allow us a break during the holidays.  And she states that although children under 10 are not allowed in the transplant unit, our baby would be-seeing that it would still be a newborn.  This made Amy extremely happy to hear as she has been worried about being separated from our new little one.  Dr. Diamond agreed that the new baby needs us too and didn’t even hesitate in making this decision (we love Dr. Diamond!!!).  The real issue is if the baby is not a match….what do we do then?  Dr. Diamond explained that opinions are very unclear if we should still do an unrelated bone marrow transplant or the normal course (3-4 more rounds) of chemo.  Especially since Charlotte is in remission already.  She says that personally she is more conservative in thinking and does not automatically want to put Charlotte through such a risky procedure, but also states that it will be a decision made with lots of medical staff’s opinions and that she and another doctor are already consulting “AML gurus” across the nation to get their educated opinions too.  We’ll just have to wait until November when the baby is born to see if we really need to make that decision or not.  Dr. Diamond states that she did discover there is a way to test Amy’s blood now (which in turn would be able to tell us if the baby is a match), but that she has not found a facility that she could actually send the blood to get the results.  And she also does not know how to get our insurance to cover this kind of testing.  So we wait some more and pray a little bit more too.

Day 2 of chemo is nearly done (last dose at 4am) and Charlotte continues to impress us.  Here’s hoping she continues to be so strong through the next 6 days.

Posted October 21, 2010 by L. Elske in Uncategorized

5 responses to “October 21st, 2010

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  1. Charlotte is amazing! So are Mommy and Daddy! This AML is no match for the Elske family!!! Glad to hear Charlotte’s transition was smooth. Sending up many prayers and sending over much love.
    Tom & Debbie

  2. Great post today! Nice to see so many smiles in all the pictures. Good info. from Dr. Diamond too. That’s wonderful news that you can all be together when the baby comes! Charlotte will be such a proud big sister. 🙂 Wishing you a restful night.

  3. Such good news! All the prayers certainly are working. Love the pictures with G”ma & G’Pa Elske. Charlotte, you keep up that terrific spirit!

    Much love from us.

    Auntie Sharon & Uncle Dean
  4. Great job Charlotte loved the plant you standing by, G & G E you look good and all so happy. Prayers are always with you.

    Joe & Sue Kaminski
  5. What a relief the baby will be able to bond and be with you in the transplant unit!! Yay!

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