A long overdue update!

A long overdue update!

I honestly have written this in my head a zillion times and then never have the chance to write it down.  The short of it, Kimbell is doing much better and she wouldn’t be without the prayers, love and support you have all given.  This has been such a long road, well she has been fighting for over 10 years but the last year has by far been the roughest and continues to be.

Minnesota went as well as it could have.  We were able to see most of our friends and K was spoiled as always by everyone at the Sheraton.  At this point they are extended family and we are so blessed to have them.  We were even to see one of the newest members of the Sheraton family and she is soooooooo cute.  Congratulations A!

Dr. Tolar is as always wonderful.  He went through K’s list of problems, validated them and said yep another complication of transplant BUT the transplant is working.  We all really needed to hear that yes she is having problems, they are real, they are known to those in the field and despite all the crazy numbers that YES this is working.

Her bone marrow results came back OK.  To be completely honest, and this is why I have been struggling with an update, the more I learn about BMT the less I understand it and to be completely frank I’m not sure any of the doctors do either.  We are dealing with the largest pediatric BMT program in the United States and they performed the first human bone marrow transplant in the world and most of the time when you ask a question it is yep or everyone responds differently.  Don’t get me wrong, there is solace in the fact that they have seen it before but man is navigating this feel like no man’s land.  The chemo in a myeloblative prep ravages your body and then your bone marrow is literally somehow connected to pretty much everything in your entire body!  So as much as these amazing doctors know they also know that every single patient is going to navigate this differently.  At least they are honest about it and they take you seriously.  They don’t shrug anything off and point out what is most important.  So anyhow with me off my rant 🙂 K’s marrow came back 100% donor – I still don’t understand this because she is only 59% donor for CD3 which the bone marrow makes.  That is the GREAT news.  The other news is her cellularity dropped from 70% to 30-40%.  Will it stay there?  Who knows.  Should it matter?  It shouldn’t….  So we wait.  I think I pray for patience more than anything anymore.  God is certainly listening to my other requests on Kimbell but this whole patience thing isn’t getting any better!

Results from her GI testing – she does have delayed gastric emptying which would cause her problems.  As Dr. Tolar said, I told you this would happen so GI wants to put her on a med 4 times a day which they approved or we can just wait it out.  Turns out while we were waiting for insurance to approve the med it started to get better!!! so I haven’t even picked up the script!

After we were done in MN we literally disappeared from the radar for over a week.  We didn’t see a single doctor, pharmacy or hospital for over a week!  K and I saw an old friend, got up on TV, laughed, snuggled, rested and pretty much hibernated.  Sometimes that is the best medicine in the world.  While K and I were on hiatus her body started just working for the first time!  She is eating more, puking less, taking less medicine, looks better, and overall just finally getting a break.  Thank you sooooo much for all the prayers, they are working so PLEASE keep them coming. 🙂

When we returned from our trip K returned to cards, a few from people we didn’t even know, and some other goodies!  I honestly cannot convey how much it meant to her to come home after a week and a half to cards and goodies.  She was soooooo excited!   And still, I am so far behind on thank you’s 🙁

The last week was crazy because Dallas/Fort Worth has been a winter wonderland.  The hospital was closed on Monday!  Wednesday she had an appointment and we ended up in the ER all day long and part of the night.  Thursday she had clinic and then Friday we packed because Pap is having heart surgery on Wednesday.  During all of this K’s GVHD decided to rear its ugly head.  This is one part I will never understand.  Everything is good and then wham it’s not. Sunday the skin GVHD was back but by Thursday it looked good….  Then Friday it was back.  Then Friday night/Saturday morning at 3 am she starts throwing up in her sleep.  Thank you Lord for waking her quickly.  Saturday he scalp is having issues again.  So like Dr. Tolar said, these are all known complications the important thing is that the transplant is working.   So thank you Lord, and thank you to all of you that have been there through this journey because without you and the donor we wouldn’t have our baby girl, complications and all, with us today.

Love,

P, J, and K

P.S. I am bound and determined to get new thank you cards printed up shortly.  The old ones, well she has long hair and that girl seems so long ago so we are going to make new ones with all her different phases from the last year.  If you want a new picture/thank you card drop us an email and as soon as we get them printed they will be on there way!

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John & Paige