Calm Before the Storm

We’re out of the hospital for a few more days, it’s our last true break before things really wind up. Tuesday is the beginning of Zoe’s pre-transplant conditioning, a process that will take about 3 weeks.

We wrapped up this past Tuesday with a spinal tap and bone marrow aspiration and a final pre-conditioning meet with Dr. P. We went over our questions and all of the test results, and in general the meeting was pretty somber.

It was time to commit. Time to sign papers and stomach all of the dire warnings that come with a procedure such as this. Every known side effect, no matter how rare, every worst case scenario. It can be really disheartening, but there isn’t a way around it.

Zoe’s test results were mixed. The vast majority of her tests results were great. Her kidneys however are still at half strength, which is really concerning. Also of concern was the renewed presence of histiocytes in her spinal fluid, something that we had successfully resolved once before with intrathecal chemotherapy. It only took one shot of it to suppress the histiocytes last time, and our hope is that the same will hold true this time, giving us time to get to conditioning without any problems.

What this tells us with very little doubt is that she has FHL. If she did not, we shouldn’t be seeing that activity any more as I understand it after treating it successfully the first time.

Outside of these two factors we are in pretty good shape, but we are of course stressed at anything that’s not 100% going into conditioning. Neither of these things will necessarily impact Zoe’s chances, however. The disease activity will be remedied very shortly with conditioning, and the kidney function doesn’t effect her risks of infection or GVHD, our worst fears, or her chance to graft.

What it does is raise the risk of fluid retention and future kidney problems, as well as their ability to use certain medications if things take a turn for the worse. This isn’t an uncommon situation though, the transplant team is well versed on handling such details. We’ve already modified her treatment plan slightly to adjust for minimal kidney damage from medication where possible.

At this point we’ve committed to our course. Pretty soon we’ll be almost entirely back in the hands of a medical team.  We have to rely on our efforts to research everything in making our choice, and hope our trust and faith are well placed.

4 thoughts on “Calm Before the Storm

  1. I’m sorry that signs are more definitively pointing toward FLH. I am impressed with how thoroughly you have researched the options and glad you are feeling clear about the treatment decisions. Hope we can be of some practical help in the following weeks! One thought I had: maybe Maya and other family members might like to come enjoy the pool at Willowhaven sometime?

  2. Here is goes. I thinking great thoughts for you and Zoe and prayer harder for the next three weeks. My gut is hopeful, however. You have worked out the best plan, and believe she has the very best chances she could possibly have.

    Love and light to you,
    Shantih and Mario

  3. Dear Evan and Michelle,
    Thank you so much for the pictures of the pre-scool Maya. She is so beautiful and I know she is as sweet as she is beautiful.
    We are thinking of you all as you go to Duke on Tuesday.We pray all goes well for the pre-treatment phase for Zoe. We hope you will be able to keep us up to date as you have been doing.
    Love to all, Nannie

  4. Will be thinking of you tomorrow as you go to Duke to begin the pretreatment phase. Will be praying for all of you! I loved the picture that we received of Maya. Take care and we love you!! Please let me know if I can help out in any way!!

    Love to you all,


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