January 13th, 2011   5 comments

Today was another day of emotional ups and downs.  Charlotte and Molly both had a good start to the day.  Charlotte was having a good time playing and staying active.  Molly seemed pretty happy too for the most part.

We had our first bone marrow transplant meeting this afternoon and had an awful lot of information and statistics given to us.  It was mainly to give us an idea of what happens in a bmt and why the doctors would recommend one for Charlotte’s condition.  Currently the plan is for us to be admitted Feb 21st.  Charlotte will start 8 days of chemo drugs then have a day off and the transplant would take place March 3rd.  He expected us to stay in the hospital for another 4-5 weeks after that while her numbers climb and they monitor her closely.  If things go well, we would be discharged in early-mid April and would have to come back once or twice a week for the next two-three months to have her blood numbers looked at.  Then, if things are looking good, her visits would probably drop down to once or twice a month for another 6 months, then even less frequent after that.

A lot of the meeting was to explain the many risks that we will likely see with the transplant, and then many of the risks that we will hopefully not see but could happen.  She will get pretty bad mouth sores-so far she has avoided those in her current chemo regimen.  She will need IV nutrition because she will likely be so low that she will stop eating and drinking.  She may get nauseous.  Again these are things we have not seen yet.  She will get fevers and could be very inactive for weeks.  Many of the other risks are a little less likely to happen and could be much more serious, even fatal.  So hopefully we won’t need to go into too much detail there.  It was a meeting where we received lots of statistics and were faced with some more real challenging decisions.  We were told that 1 in 4 people will die from a transplant related issue/infection or Graft vs Host disease side effect (although the success rate at AFCH is a little higher than that).  But we were also told that we have a 60-70% chance of this being the absolute cure for Charlotte’s leukemia.  Only 20% of people relapse after a transplant so that is also in her favor.  Dr said that we were allowed to have Molly in the room with us as he does not see that as being any higher risk of infection like another toddler would be.  But after the day we had, we are still giving that idea much thought.

He was still optimistic about the chances of a good outcome for Charlotte.  He said he is very pleased with the match of the donor.  He said that so far he has seen nothing in her that would cause much concern about some of these more serious side effects happening.  She is still quite healthy compared to many that go through transplant.  Although it was hard for me to see through my tears of concern and fear, Amy (who was an emotional rock in this meeting) assured me that he was still smiling throughout most of the specific Charlotte related talk.  Over the next month, we will have to come back for more tests to determine the conditions of her organs and other concerns.  Once he has those results, we will have another meeting where he will be able to comment more on her transplant.

He left us to think about this information and returned literally three seconds later with a family that just happened to walk through the door at that time.  Here was a 13 year old son and his mother.  He had AML, and went through a successful bone marrow transplant a year ago and was returning to visit the staff to say “Hi”.  Amy and I saw this as a good sign and we briefly talked with them as we were choking back tears of joy for them, and tears of positive thoughts for us.

We returned to our room and had G&G E go home so we could watch the kids, then Charlotte spiked a fever about 5pm.  We knew it was coming but still fail to remember how miserable she feels and thus how clingy, needy and sad she gets.  So it is making Amy and I think more about having Molly live through this with us in such a small room.

We had a lot of information today.  Some good, some could be pretty damn bad.  Needless today, we are more scared than we were, but we are also hopeful and excited about the possiblity that there may be some end to this in measureable sight.  Thank you to all of the staff at AFCH that are helping Charlotte make her way through this.

Posted January 14, 2011 by L. Elske in Uncategorized

5 responses to “January 13th, 2011

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  1. Tears of love, hope and strength are being shed for your family now. Thank you for sharing your emotional yet information-filled day with us.

  2. God will be with you through this time. So many prayers are being said for Charlotte that I can’t help but think that she will be cancer-free and be the sweet little girl that she is..playing with her little sister and just enjoying life. Our love to all of you, Lon, Amy, Charlotte, Molly and the grandparents who are priceless! God Bless!

  3. Prayers are being sent your way. Thank you for allowing me to share this journal. It comes at a time in my life where it helps me keep perspective. I keep you all in my thoughts and prayers.

  4. many,many prayers will be said. remember, God is good, no, God is GREAT! our prayers have sustained you so far and i know they will bring GREAT things to all of you thru Jesus. sometimes we just don’t know why things happen and it’s perfectly OK to get anxious, sad, angry, happy, mad. whatever it is, God will handle it. and you CAN depend on Him for your highest highs and your lowest lows. He IS our rock and our future!

  5. Wow, this sounds really overwhelming! I’ve been thinking about all of you. We continue to pray for Charlotte and all of you.

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