Happy 5 Re-Birthday & 15th Birthday Kimbell!

It has been way to long since I have updated.  I just kept thinking something would change or good would happen.  I’m not even sure where I left off and I can’t check b/c I’m on the plane!  Kimbell has spent most of 2019 sick and in and out of the hospital.  She ended her freshman year in May and we were able to take a quick vacation.  Unfortunately that was followed by over two weeks straight of hospital visits.  Insurance had us go to this special clinic for sick kids at Mayo Clinic.  Lets just say it was a nightmare and we will never ever go back.  The trip was absolutely worthless and due to them incorrectly documenting things has caused so much trouble.  

On a positive note K taught me how to play Pokemon Go so we had some fun.  We also spent a week at Univ of MN for K’s 5 year visit.  The good news, her lungs, bones and heart look good.  We also learned that year 5 holds the greatest risk for a relapse or secondary cancer.  Once she gets to year 6 the risks go down.  Granted that has nothing to do with her underlying disease that caused the MDS to begin with, this only has to do with the BMT and MDS.  The other good news is that it appears that after 9 years NIH and the U are getting somewhere in regards to what is really going on.  We were floored when this nice man from Greece came in and introduced himself as Dr. George.  Dr. George is extremely intelligent, but then anyone that knows Dr Tolar knows he wouldn’t put up with you if you weren’t 🙂 Dr. George is in a special fellowship program at the U for PhD and MD’s.  Ironically he worked at UT Southwestern, then went to Cinci Children’s and is now at the U!  Such a small world.  His focus is telomeres and Dyskeratosis Congenita, specifically two new genes that have yet to be publish.  He wanted to meet Kimbell since it is her genes that they are working on 🙂  This is so exciting b/c maybe with the genes they will one day be able to do gene modification.  Everyday that becomes more and more of a reality.  The FDA approved gene modification this year for a very rare form of muscular dystrophy.  This is our hope and our dream.

So back to reality.  The bottom line Kimbell’s immune system never reconstituted itself correctly.  Her NK (natural killer cells) are back to where they were 30 days post transplant.  Her T cells are ok not great and her B cells are totally out of control.  This is an extremely rare complication to the point that many tests are abnormal and they point to cGVHD (chronic graft versus host disease) of the central nervous system.  Unfortunately that isn’t something you can biopsy and in typical Kimbell fashion it isn’t that simple.  The decision was made in May to put Kimbell on immune suppression meds, one of the ones we used during bone marrow transplant.  K started MMF in May and we “think” it is helping.  The problem with immune suppression is that is suppresses all of your immune system not just the parts we want so the question will be how low her t cells, b cell and nk cells go.  In June while we were in MN she got a sinus infection.  She has been on antibiotics for over 6 weeks now and most likely according to hem/onc is going to need surgery, we meet with our amazing wonderful Dr. Marcincek next week.   We also met with the long term survivor clinic at the U.  I really liked him.  He was sweet and honest with K.  He didn’t sugar coat anything and flat out said look you have had every complication we have never seen and it’s been a rough road.  He told her what to watch for this year, if she starts having x,y, or z problems we stop immediately and go to the PCP, hem/onc or the ER.  If a,b,c happens then he need to know but the good part is that he will be with her for well as long as he is working at the U or she is alive.  He is peds and adults!  That is awesome news b/c the whole adult medical system stresses me out!

Neurology – So we have literally gone to Cook’s every 18 days to be admitted for 3 days of high dose IVIG treatment.  K gets discharged and then it takes a few days to recover and we repeat.  Thanks to Mayo Cook’s neuro wanted to redo everything, didn’t want to listen to the U at all and wanted her to get sicker before they would give her IVIG.  Needless to say Dr. Tolar said NO.  There was a conference call with hem/onc in Dallas but there is such a shortage of IVIG in Dallas only BMT and ICU patients are getting it.  So what does that mean for us?  That means that we are now traveling to Minneapolis every three weeks!  We tried a lower dose on Friday – 75% of what she was getting – and ran it over 18 hours straight so she got discharged on Saturday.  With the help of zofran and phenergan we are on our way home.  We will see over the next few days how this worked.  The big question is will she get aseptic meningitis from it.  If not that means only 1 night in the hospital every three weeks!  That would be awesome.  Over the next couple of weeks depending on how she feels, well that will tell us if we can get away with the lower dose.  I just wish we lived closer to her doctors in Minneapolis.  I was telling a friend yesterday we have some doctors in Fort Worth- ped, pulm and ENT that would do anything for K and move mountains for her and then the other amazing doctors just happen to be on the other side of the country!  Needless to say it doesn’t make for an easy situation.

Kimbell’s 15th Birthday is tomorrow!!  It still seems surreal.  K has frantically been doing her driver’s ed on her phone the last few days.  Friday night I’m trying to sleep and I hear someone talking.  I was totally lost b/c it wasn’t coming from the room next to us and K was asleep.  Apparently K had woken up and decided to just turn the driver’s ed on!!  No hi mom, what’s up mom no nothing just turns the phone on!  So tomorrow she should be getting her permit.  She is so excited.  We are planning on going and seeing my parents before school starts and we were talking about flying versus driving.  Kimbell “Let’s drive”  me – “why??”  K – “I’ll have my permit, I can drive!!”  I about fell over.  When we go to the DPS tomorrow and she gets her permit, such a big milestone it will certainly not be lost on me how many people were involved to get our daughter this far in life.  We couldn’t have done it without every single one of you.

I hope you all have had a wonderful summer, are happy and most importantly healthy.  Please keep us in your prayers as this marathon continues with what seems to have more hurdles then ever.

Love,

Kimbell, John, Paige and Stitch

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