Unanswered questions, thanks and prayers

Unanswered questions, thanks and prayers

These just keep getting longer!!  Monday was interesting, her counts came up on Thursday and then went down but not as low as last Monday and she has gained some weight!  The power of prayer.  The appetite stimulant finally kicked in and Sunday she ate like a normal kid, unfortunately despite the max dose of zofran, ativan and marinol at 3:30 am she started throwing up in her sleep.  When we saw GI based on the fact that she  is throws up if she eats a normal amount despite the nausea meds he thinks it could be that her stomach is not emptying (this can be fixed via surgery – not major surgery!), gall stones, or GVHD.  He also said that she will not get an NG, NJ or G tube because she would throw the feeds up.  That was music to Kimbell’s ears.  So next Tuesday she has a very long day in radiology 6-7 hours, if those are negative then they will have to do an EGD and colonoscopy to take biopsies to check for GVHD.

Today we saw surgery and they are taking K’s Hickman line out tomorrow afternoon!  This is so exciting and she is anxious to get it out.  Is it to early?  We won’t know that until we find out what is going on GI wise because TPN is still a possibility but for now she is going to get to take her bath on Friday that she has been wanting since the middle of June!  Honestly at this point, if the end up putting the line back in ok but at least she will be free from two tubes hanging out of her chest for a little while!!

Tomorrow morning we go and see ENT.  K has been anxious for this appointment because her throat has been hurting for months and well Dr. Marcincuk has been through a lot over the years and K trusts her.  That is huge.  After that we check into surgery at 11:30.  Please pray they figure out this throat pain and the removal of the line is uneventful.

Engraftment – this is one part of BMT I honestly do not understand.  You are technically engrafted after 3 consecutive days of an ANC of over 500 but that is kind of misleading.  At 30 days they drew her engraftment labs her CD 15 was 100% and has thankfully remained 100% on all of the subsequent engraftment labs.  Her CD3 is another story, it started at 92% and has gone down from there.  It is now 59% donor.  How on earth K’s malfunctioning marrow could even exist is totally beyond me.  Needless to say we were a bit stressed out.  In true Dr. Tolar fashion he wrote me back quickly – I am sure he could see me freaking out in his head – and said that the CD3 can do this and we will rerun the test next week in MN and go from there. Things that make you go hmmmmmm….  Unfortunately CD3 is apparently really important b/c it is responsible for T cell activation.  To give you an idea of how important T cells are, BMT kiddos don’t get out of isolation until the T cell count is over 200.  When K’s came back last month they said we will check them in 3 months…

Needless to say there continues to be a lot on the line and every time I want to update something else happens.  It is an up and down journey with the only thing that is constant is that we have problems that need to be solved.  We continue to keep the wins in the win column and try to concentrate on those although some days it is hard.  Today when surgery weighed her she was down from Monday. I have long thought K stopped eating because she was throwing up so much.  Apparently my hunch was right because she is back to not really eating despite the appetite stimulant.  Please pray they figure out her GI stuff quickly, surgery goes well tomorrow and Marcincuk can figure out why her throat hurts.

Our family will never be able to convey how blessed we are for all of the prayers that are said for our daughter.  It truly means the world to us.  Thank you to all of the followers of Battle for a Cure Foundation who follow Kimbell and continue to pray for her despite never knowing her.  Last week when I called my parents to update them my mom was insistent that I call SCS and ask them to pray for her during chapel.  Unfortunately no matter how many times K and I have planned to go up there it never works out.  Last week I got a couple of texts telling me that Mrs. Holder (K’s 2nd grade teacher) ran Chapel and everyone prayed for Kimbell!!  Kimbell loves mail so she was so excited when she got a card from Mr. Kirk, Ms. Johnston, and Ms. Cervas the at the beginning of the week she got cards from Mrs. Holder and her class 🙂  Thank you all so very very much.

Love,

P, J and K

P.S.       HAPPY BIRTHDAY DR OLVERA, we love you!

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John & Paige