Programming Notes

If you haven’t seen it yet, please check out the most recent update on Zoe — she’s had a big week.

We’ve reached our biggest milestone along the way to being able to say we’ve beat this thing, the 100 days post-transplant without incident. No infections, no resurgence of the disease, no loss of graft, and a 100% donor cell immune system. In addition to reaching that milestone, she has now had her central lines removed and a portacath installed. The porta-cath is a smaller site for IV access that does not require daily care, flushes, cleaning, or otherwise risky access to her body, each of which poses a risk of infection. She can now go into a (clean) pool, a real bath, and roll over with abandon.

Our next steps are to make it to her first birthday in January, and then a year post-transplant. We fully expect things to continue as they have been at this point, we’ve seen no reason to fear her disease will come back, and now we just need to keep the whole family healthy until her immune system is robust enough to fight off infections on it’s own. She will still need regular hospital visits, blood draws, and “G” to maintain her white blood cell count until it maintains itself, but these are minor chores when compared to what we’ve been through until now.

I’m not sure it’s hit us yet, but I imagine one day we’ll wake up and realize what we’ve been through. Until then, we’ll just keep moving forward and try to get back to a happy place — right now I’d say we’re exhausted and dazed, ready for the stress to pass.

What does that mean for this site? Well, I began this site as a leap of faith. I wanted to document an experience with this deadly disease and hoped that in the end things would work out for us, and that a positive and successful story would be easily found and accessible for parents coming along behind us who have to face what we have faced. This site will remain as it is indefinitely, and I’ll continue to be in contact with anyone who has questions about HLH and our story should they need us.

I will be updating periodically when we have news to share, but not nearly as often as we have been. I would think that once a week or every other week is more likely, and in time that will drag out even further as we resume a normal life. I’ll post milestones and pictures when I have them, particularly when Zoe has grown up a little more. I want parents to see that a child can make it through this and be just fine. Hope is a very important thing to have.

4 thoughts on “Programming Notes

  1. Dear Evan,
    We want to tell you how much we appreciate your keeping us up to date on Zoe’s progress.She has done so well and we are so happy for this milestone.
    We will continue to pray for your family as you return home. What a joyful day that will be. Hug Zoe and Maya for me!!
    Send pictures when you have them.
    Love, Nannie

  2. So happy to hear that Zoe’s central lines have been removed and now you only have to deal with a port-a-cath. Hope to hear that you will be returning home soon and that everyone stays healthy.

    Thank you for the frequent updates in the last several months as I know it will be helpful to someone who may be going through this.

    Will continue to pray for your family and we hope to be able to see you soon!!

    Love to you all,


  3. We are so happy for all of you and especially for Zoe’s remarkable recovery – our prayers for you all
    continue to be answered. Thank you for writing this Evan; it has been quite a journey for all of you. We hope you will soon be home and returning to a somewhat “normal” life after all these months. God bless!
    Aunt Judy

  4. Wonderful! You’ve all been through an amazing experience and more people than you know are celebrating and giving thanks with you. As friends of Sandra and Larry’s we’ve been following your posts and looking forward to this one. Thank you for sharing so much of your life with us.

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