1 Year Post BMT Update – good news and not

1 Year Post BMT Update – good news and not

Congratulations Kimbell!!!  We are so incredibly blessed to have had the support, prayers, guidance and love for the past 15 months it is unbelievable.  When her BMT doctor saw her he literally took two steps back and lit up like a Christmas tree 🙂  He told us that he had only shared some of his concerns and he never thought it would go this well.  That is the power of prayers and God’s grace.  We also got a letter from her donor!!  We pray we get to meet her one day.  She got her nursing license right before her donation of life.  What an incredible story to tell on your first day of work!  She also likes Disney 🙂

If you have been trying to get in touch with us via Facebook I am so sorry, I have not been on in months.  We are trying to get caught up on life which means mail, taxes and school!  The three of us made a quick trip to MN for K’s one year anniversary visit.  The big news is that for the first time in over 8 years she no longer has a metal appliance with a central line going into her heart.  Yes, they took her port out!!  Also her heart and lungs look good so far!  Her neuropsych testing showed she actually improved on some of her issues post bmt!  That one is so big because one of the biggest concerns going into her high toxicity myeloblative bmt was that there would be neuro toxicity so this was music to our ears.  John and I both had tears as the doctor was telling us the results.  There will always be issues but that is to be expected given the amount of chemo she had and her seizures but it isn’t worse.  We were also informed that starting at her third anniversary she will be moved to Life after Cancer program.  Wow, never thought we would hear that.  Unfortunately the long-term effects on her organs will be a continual unknown but for now everything looks great.  Her kidneys appear to have stabilized again, thank you Lord

The big shocker was her bone marrow biopsy.  Her counts have been stable for months so I think we just all assumed the BMB would be the same as it had been 6 months ago or better.  You are always hoping for better.  Kimbell once again showed us that she is unique, truly one of a kind which in the medical world really sucks.  John and I continue to remind ourselves we have been on borrowed time for years now so regardless of what happens long-term we have had more memories, laughs, and love in the last year then the last 11.  So what did her marrow show – the good part is that her engraftment for CD 15 remained at 100% and CD3 remained stable.  It actually went up a couple of percentage points but with the margin of error it was the virtually the same.  The big thing is that it didn’t go down.  CD3 is really important because those are your t cells that fight infection.  K couldn’t fight infection before so it is a big deal that she has as much donor engraftment as possible.  The not so good was her cellularity.  Cellularity in your bone marrow is like the water boiling in a pot.  As you age the cellularity decreases so a baby is born with 100% and as the baby ages it goes down.  With myeloblative transplant you kill off all of the bone marrow so you empty all of your water in your pot.  It is then replaced with the donor marrow and when you start engrafting it means that the marrow has found its way to the bones and started growing thus producing blood.  When K was little the thought was that you had to have so much “water” left to produce blood but as they have found out it isn’t as closely correlated as they had thought.  What that means is that there are some people living with somewhat normal counts with very low cellularity – 10-20%.  Kimbell’s cellularity has continued to go down with every single marrow post transplant.  We knew something was up b/c of the way we received the results and after dealing with this team it is pretty easy to read into the vague correspondence.  This marrow showed 20-30% cellularity which is roughly a 33% drop from the previous marrow.  I asked if eventually it will stabilize.  It should, and that is the hope but from my impression we seem to once again be in unchartered territory.  So we watch her counts and pray.

While we were in MN K got all of her non live baby vaccines!  Poor K she hasn’t had vaccines in so long and she got 5.  She came out of the OR and for days afterward, my legs, my arms.  John and I told her welcome to being normal 🙂  Normal kids response to vaccines and get them!  She’s not so sure about this part of normal.  She also asked JT what normal kids do.  He told her they study, they play and do chores!!! I love her doctor.  K also asked for a job in his world-renowned lab.  Apparently he has had multiple patients work in his lab years after their transplants.  After he said yes, she then asked if he was going to write her a letter of recommendation!  Looking towards the future is such an incredible gift.

We go back to Cook’s BMT in a couple of months and will see endocrinology as well.  A side effect of lots of chemo is your hormones are all out of whack.  God knows me well and has blessed me b/c I can’t tell that they are out of whack!

Last but not least, K made homemade soap for all the kids on the BMT floor before we left and wrapped them all up.  We were able to drop them off on the floor.  We didn’t have time to write the cards but hopefully the nurses were able to tell the kids who they came from and why.  We took cupcakes to the nurses and doctors in clinic. A cake to Dr. Tolar’s lab because they are the ones that are never seen yet working diligently for a cure and last but not least we were able to serve cake to our extended family at the Sheraton.

While things have definitely moved in  a positive direction and calmed down please continue to pray for K. The future is clearly unknown and we really need her marrow to stabilize.  Her organs will always be at risk and as part of the underlying disease we will continue to look for tumors.  She hasn’t had a tumor in the last two years but the first one was scary enough.  K has also started throwing up again every day.  I am hopeful that it is a bug but her eyes make me worry – after transplant the way she looked change and we have seen the old “look” not constantly but a few times in the last week.  Even worse was a comment she made about her being worried.  Please pray for all the kids and families struggling.  We are continually reminded how blessed we have been while others are not nearly as fortunate.   Thank you for your love, thoughts and most of all prayers.

Love,

P, J, and K

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John & Paige