Where to begin? So much has happened in the past couple of months since my last update. First, an apology for a lack of news for those still following Zoe’s progress. My father became ill in April, and over the course of 2 months was in and out of the hospital. He lost his fight on May 26th, his health was just too poor and immune system too weak to fight off infections. A bitter irony, to be sure.
Michelle and I have been juggling the girls, work, and illness of one kind or another now for so long, it has become our norm. We’re still hoping for that break in the clouds though, when Zoe’s health is clear and the rest of the family remains in good health as well. Oh for the days of just work and family.
Zoe has generally done very well in recent months, with one unsettling exception. She has had rashes that have come and gone regularly, but seemed to get worse as we tapered her tacrolimus, which is the immuno-suppressent medication that she was expected to be on for approximately a year post-transplant. We’ve passed that point and so continued with her taper, but when we actually stopped it, the rashes seemed to get worse to the point where we felt we had to restart.
Michelle and the girls went to Duke on Monday, and their level of concern was high over the rashes. So high, there was even talk of a return of HLH, though we have to believe that’s not possible. The thinking until now was that the rashing was the result of a drug interaction (possibly sun sensitivity, a side-effect of tacrolimus) or something else, perhaps hay fever or an allergy. There is also a risk it could be GvHD.
Zoe’s last chimerism test to determine how much of her immune system is donor and how much was hers was very positive, >98% donor. As I understand the science, this should mean little or no GvHD, which is why everyone has continued to feel the rash was something else. It has proven persistent enough and has increased not decreased, so we have to find the cause.
We’ve ordered a new chimerism and we’re very anxious and scared about the results. Hopefully the result is the same and there is something else going on with her skin. If her graft has begun to dip, things will get much harder for Zoe again. She was due to have her port out in a week — that’s not looking like it will happen yet.
Zoe’s mood is good, she’s had a great few months learning to play with her sister and having new experiences since the end of flu season. She’s been able to play with new kids, visit lots of places she didn’t get to go this past year, and even spend a week at the beach (inside during the day). She looks good, not withstanding the rash, and when she’s not itchy she feels good.
We are trying to remain optimistic that we’re still on course and that this is just a confusing detour. Everything has gone nearly perfectly so far, it would be heartbreaking to have to restart any portion of her treatment, and a nightmare to contemplate another transplant and the huge risks that that would entail. I’ll update again when we have news to share.
4 thoughts on “The Spring of our Discontent”
Thank you so much for taking the time to share your story and documenting your beautiful Zoe’s progress. I just received a call that my 9wk old nephew was diagnosed with HLH. Your site is encouraging and uplifting. Thank You.
I’m sorry to hear about your nephew’s diagnosis, but be grateful that it was diagnosed quickly. Please feel free to write if you have any questions you feel I could help with.
Evan, I have had a serious concern in my heart about your Dad that would just not go away. I’ve tried to find him online but to no avail until today. I haven’t been able to find anything until today. We have not been in touch since approximately 2002. I’ve looked for you too.I thought so much of you. I will never forget our adventures we had together. I know this is not the place to talk about your Dad but I am devasted. If you could find it in your heart I ask that you email me and I could get in touch with you by phone if you will consider that option. I just need to know more about what happened to you and him. Both of you were an important part of my life. I’ve been sick and on disability since 2003. Life doesn’t tun out as we sometimes plan. I wish I had known earlier and I would have found a way to see him. Why is it too late when we do the things that we should? Please consider my request, I’m so sorry…more than you will ever know. My heartfelt condolences to all of your family. He was a good man to both me and Jeremy.
I share your story and can relate to you. My son Marvell passed away from this diease back in 2002 you just have to trusrt and believe everything will be ok.