May 2019
2019 has been quite the year. The good news K finished her freshman year and it is now summer 🙂 It has been an extremely challenging spring to say the least. Kimbell continues to have more and more problems. It seems everywhere we look we find something else and things change daily at times. The only consistent thing is the addition of new doctors and new meds! Insurance continues to deny Ritux and we continue to fight it. GI wants her gallbladder out but BMT says the risks are too high. That was kind of a shocker. We went to pain management a few months ago where they put her on a new med. That med caused more problems then we could have imagined! Needless to say she is off of it!
I guess the big news is she went back on immune suppression in hopes to help the b cell hyperplasia and GVHD of her central nervous system. They think the b cell hyperplasia is causing issues with all of her organs. Kimbell is not happy about that to say the least but she wasn’t about to argue with her BMT doctor when he called her! Thankfully the only side effect so far is extreme sensitivity to the sun. Praying it stays that way. It typically takes 3 months to start seeing results. BMT also wants her to delay her next round of IVIG so hoping she doesn’t have problems! We will have to monitor her liver and kidneys closely. Last time she was on immune suppression she had moderate kidney failure. The drug she is on now we used at the beginning of BMT but she was getting chemo at the same time so no one knows what caused what.
The other crazy news revolves around United Health Care. They called two weeks ago about a program at Mayo Clinic for incredibly complex kiddos like Kimbell. UHC wants us to go there for a zillionth opinion. At the rate they have been denying things we said yes. UHC provided the team at Mayo with her info and they want to see her so it looks like we will be going in June for a week. Kimbell also has her 5 year BMT visit in June so June will be full of hospitals. This marks the beginning of care for the long term survivors clinic – kind of crazy. I asked K to call her doctor’s office the other day. A few minutes later she comes to me and says which option do I pick? I’m a BMT patient, a hem/onc patient, and a long term survivor patient!
Please pray for K. While I live it everyday I can’t imagine what she is going through. As she says life was supposed to get better and it did for a while but things are really rough. Add into that school, and the attempt at a social life and well it’s just really really hard. Then you add in high dose steroids and oh nelly.
Hope you are all well!
Love,
K, P, J and Stitch
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