January 2019, the good, the bad and the great!

Long update! I haven’t updated in a while because things have just been kind of blah and we didn’t really know anything. Kimbell has continued to go inpatient every 18 days for infusions that last three days. Needless to say it is a pain but it helps her to feel better and she gets two good weeks out of it.

We just returned from seeing her BMT team and all her specialists. The good news is they now think they know what is wrong. This is huge as the only thing anyone has agreed upon is no one has as many different problems post BMT as she has had. There had to be one thing causing all the problems but no one had any ideas until now. The long and short of it is that her B cells have to be bad. B cells are an important part of the immune systems and have the ability to affect the entire body. They think that this is causing her blood clots, her neuromuscular problems which have continued to get worse, and her endocrine issues. So how do you fix it? That the bad news. Please pray that insurance pays for the new treatment. Once insurance approves it she will start a new infusion that is a targeted treatment for non hodgkin’s lymphoma and chronic leukemia’s. It works like chemo in that it wipes out all of the target but is not technically chemo. Some people have traditional chemo side effects and some have none. Ironically K’s great grandma is taking the same drug for her cancer right now. This infusion will wipe out all of her b cells which they think will make her feel a lot better and get rid of her other problems. Obviously b cells are there for a reason though so she will require IVIG. In most people the drug keeps the b cells at bay for 4-6 months after one to two infusions. If it works she will need more infusions every time the b cells start to come back. Please pray they have found the answer and insurance pays for it!!

So now for the GREAT news! NIH is working on a grant for Dr. Tolar’s lab which directly affects Kimbell!!! This is so exciting. Please pray the grant goes through and they find the underlying cause of K’s issues.

Thank you for all the prayers, we need them!!

Love, K, J, P and Stitch 🙂

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