6 Month Studies

Zoe had her 6 months post-transplant studies recently, I wanted to offer some of those numbers for families who are looking for another marker in where HLH kids might be after that amount of time. Obviously every child is different, and each has their own set of struggles that might be different from the next, but I believe that more publicly available information is helpful. I’ll go over some numbers, and then offer a reference point for them in parentheses so that you can see where she falls.

  • Ferritin: 95 (7-91 normal) – This is the marker that helped diagnose Zoe’s HLH originally, it was up around 5000 at that time; it has since returned to normal
  • Cortisol: .5 (5-25) – Her Cortisol level is low, and we’ve consistently had a hard time raising it; she receives Hydrocortisone multiple times a day, but were she to get sick in any way she would need “stress” doses to help her fight
  • Vitamin D: 15 (30-100) – Her Vitamin D level is also low, perhaps in part due to it being winter and in part due to her limited outside time, in addition to consequences of her treatment; she receives Poli-vi-sol vitamin supplements each day, but she will be starting a further supplement next week
  • FK-506: 4.4 (5-20) – Tacrolimus is a little low, we’ve been working to get it up without raising it too quickly
  • Magnesium: 1.8 (1.9-2.6) – On target, a little low perhaps; if you are a regular reader you may recall that Zoe takes Magnesium supplements due to consequences of her treatment and being consistently low until recently; restoring these levels naturally takes a great deal of time without an oral supplement
  • Sodium: 137 (134-146) – Good
  • Hemoglobin: 11.8 (10-13.5) – Good
  • Platelets: 327 (150-400) – Good
  • Bilirubin: .5 (.4-1.5) – Good; Zoe never had any danger with liver function that we know of, we are lucky; some transplant families have to watch this number closely for awhile
  • Creatinine: .2 (.1-.6) – Good; her kidney function appears to have returned fully after a scare pre-transplant
  • WBC: 8.1 (3.8-14) – Excellent! One of the items we all watch most closely post-transplant; Zoe has not dropped below 6.0 for awhile, we’re very excited about her stability here
  • Engraftment Analysis: >98%, no pre-transplant recipient cells detected; This means that, based on the test used, Zoe’s marrow is still greater than 98% donor, as it was at her first test post-transplant; We’re right where we want to be on this test
  • General Mental Status: “Alert, Smiling, Age appropriate in speech and responses”

Beyond that, developmentally, Zoe is on the cusp of walking. She’s been crawling for a few weeks, started cruising after a week or two of crawling, and is now trying to stand freely. She is babbling quite a bit, knows how to say Mama and Dada and Aya (Maya), as well as a few other “words”. As best we can tell, she is doing great. Her first birthday is on Monday, January 10th.

We’ve had quite a few bumps post-transplant, some of which have come and gone fast enough that I didn’t document them here, but nothing life-threatening or indicative of a return of HLH.

Our task now is to keep on keeping on: keep ourselves and our 3 year old illness free by avoiding iffy situations during cold/flu season, and thereby keep Zoe healthy; get her Cortisol and Vitamin D levels up, and maintain her other meds. In another 6 months we hope to be done with most of her current medications, though it is possible she may continue to need supplements. Go Zoe!

10 thoughts on “6 Month Studies

  1. Wow! Thank you so much for sharing your touching and amazing journey with HLH. My very close friend’s 4 month old was just dx’d yesterday and will begin chemo today. So much of what you find and read on the internet is BAD news, it was uplifting to read your blog and has restored some of my hope for her and her baby. Right now I’m at a loss for what I can do for her…she’s a single mother on Medicaid. Having been in her shoes not long ago can you give me any recommendations on what I can do for her? I’ve thought about starting up a bank account for friends/family to contribute towards to help with the cost of all of this. Any advice/suggestions you can give would be wonderful.
    Congratulations on your beautiful baby Zoe! Your story touched me and like I said earlier lifted my spirits. As a mother of 3…the youngest (a girl) who just turned one this past Dec. 29th, I can’t begin to imagine what this past year has been like for you and your family.
    Best wishes to you and God bless,

  2. I can’t imagine how much harder it would be to manage this without insurance, I can only hope that Medicaid will provide for the transplant her child will need if she has HLH at that age.

    My suggestion is to look into financial support options, there are quite a few. We were very very lucky, my wife chose an insurance plan that covered most of our medical expenses and we never had to fight for coverage of necessary items, so we did not create a fundraiser or similar support program.

    Many families do start fundraisers, however. There are programs that will accept donations tax-free from supporters that then help pay medical expenses as a broker of sorts. That might be a place to start.

    Get the hospital social worker involved right away, they will have programs that they can recommend locally as well. You can get a lot of information about other programs online too.

    Best of luck to you and yours, feel free to contact us if you have questions you think we can help with hlhjournal@gmail.com.


  3. I was so grateful to find your website and read your journal entries. My grandson was just diagnosed with HLH one month ago and we are still in the numbing shock phase of this.
    He was diagnosed early, but apart from your website I’ve found little that is encouraging about this disease. We are fortunate to have access to Childrens Hospital in Atlanta and wonderful care there. He has had 4 weeks of chemo and experiences what appears to be stomach pain despite the reflux meds. Breastfeeding is the only thing that comforts him.

    I’ve just begun to delve into your website. Thank you again for such a great site. Makes us feel not quite so alone with this!

  4. Julie,

    Thank you for writing. Your comment is *exactly* what I was hoping to provide with this website, a complete story of a family fighting through this disease. We didn’t know what the outcome would be when we started, but we’re grateful every day that it has been positive so far.

    We wish you the best with your fight, don’t hesitate to contact me at hlhjournal@gmail.com if you have questions you think we could help with.


  5. Thank you so much for your wonderful journal. My son, Quentin, has hlh and xlp- he is 24 now. He will be getting a RI transplant as soon as a match is found, at CCMC. This is wonderful news about your Zoe and I will share this with my son. He has many many questions about the days after transplant.

    Thank you so very much!
    Stacy (Atlanta GA)

  6. Hi Evan,

    Talked to Sandra via SKYPE last night and delighted to learn that Zoe is doing so well. Could you write a few lines + photo for next issue of our Church Magazine? Deadline March 15th. Zoe continues to be prayed for in every Sunday and Tuesday services and am reguarly asked for updates.



  7. May I join the other voices and say thank you our Grandson became very ill and was flow to Perth Australia where he was put on life support. He is now breathing on his own still very sick but having Chemotherapy twice a week, he has been diagnosed with HLH. I am going to send your blog to my daughter in the hope that it will help her. I too feel very lost in how to help Patricia

  8. Since writing last November, I am happy to report that our Grandson Paul Henry Butler, is now off
    Life Support. Pauli commenced Chemotherapy, Antibiotics Steroid almost immediately The Princess Margaret Hospital Perth W.A and Ronald McDonald House, have made every effort to support and assist, our daughter Samanti and son-in-law Geoff to be with their little boy round the clock.

    Paul Henry has responded well to treatment, he has had his ups and downs and has a long way to go.

    A Bone Marrow Donor is now being sought by Princess Margaret Hospital Perth W.A for Paul Henry
    the transplant is necessary if he is to survive HLH.

    By enrolling on the International Bone Marrow Register, going to your GP you could save a life of a Precious Child.

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