We learned that Zoe is likely to have HLH on Wednsday March 10th. The hematologist (Dr. M) who made the diagnosis came into the room around 7pm to talk to us and presented the following information:
- Zoe currently presents 4 out of 8 signs of the disease, and as Dr. M put it, “half” of two other signs; he feels given this and his analysis that we have about a 95% chance that the disease is HLH
- There is a 5% chance (these are always estimates of course) that she has Neuroblastoma
- HLH is very rare, he has seen only 12 cases in his career; I estimate him to be around 50-55 years old. Michelle remembers him saying that the hospical, a major regional children’s hospital, has only ever seen 5 cases.
- There are two variations of the disease, one that is familial or inherited, and one that is not; both are triggered via infection of some sort. Dr. M feels certain that Zoe has the familial variation due to her age — she would be unlikely to have acquired the other variation so young. They will in time test to be sure which it is, but initial treatment is the same regardless.
- Zoe will need chemotherapy very soon. If she has the familial variation, she will need a Bone Marrow Transplant (BMT). There is no other method of cure, and the chemo only puts the disease in remission upon success.
- BMT carries a risk of both neurological and physical complications.
- The mortality rate of this disease without successful treatment is 100%.
This is devastating news. Michelle and I held out hope that Zoe had a viral infection, a possibility that the other doctors overseeing Zoe’s treatment continued to hold out as reasonable until the end. It was only upon failure of every test short of a bone marrow sample to diagnose the problem that we began to fear the worst.
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I AM TRULY DEVASTATED BY THIS NEWS AND CANNOT BEGIN TO IMAGINE WHAT IT IS LIKE FOR THE TWO OF YOU…MY LOVE, HOPE, AND PRAYERS ARE WITH YOU…CONRAD
Evan & Michelle,
I am sending my prayers and hope your way. Zoe is such a beautiful baby and you both are exceptional parents. Please know you can contact me anytime. Take care of yourselves. Love to you all, Tracy
Michelle & Evan,
My heart goes out to the both of you. I will pray for your family and for a cure for precious Zoe. Take care of yourselves during this battle and if there is anything I can do to help you take care of yourselves, please don’t hesitate to ask.
You don’t know me and I don’t know you, but we have a very sad and scary thing incommon. My 1year old daughter Maya was diagnosed with FHLH @ 81/2 months old. In December she started with fevers that were very high. She has finished her enitial 8 week regimen of etopiside and is now on a maintnance regimen. We got news today that we have a tenative date for Maya’s transplant. It has been a very long and scary road for our little girl as it has been for yours. Know one thing there are sooooo many Histio families out there. I have come to know so many. They are a great support. If ever you find yourselves doubting or just feeling totally alone and overwelmed know that you are not alone and we are all here to support you and your family. We will add little Zoe to our list of Histio Warriors. If you ever have questions or just need to vent about this disease please feel free to ask and I will help the best that I can. Take or yourselves and eachother.
Shana thank you and everyone for your kind words and thoughts. We haven’t yet spoken to any other Histio families, so it’s great to hear from that perspective.
We will keep your child in our hearts as well and hope to hear good news for your Maya.
i need to know important test of FHLH and its symptoms during pregnancy.plz plz plz ,do inform me as early as possible.
Rosie,
I am not sure about testing while pregnant, I believe you have to wait until the child is born but you should definitely check with your doctor on that.
After birth, keep a close eye out for fevers and take him/her in for those. You can get tested using the forms and information here:
http://www.cincinnatichildrens.org/svc/alpha/m/molecular-genetics/hlh-spec.htm
Feel free to email me if you have more questions.
Hllo im very sorry about your child, we are currently going through something similar . My grandson is having treatment for adenvirus and on an ecmo machine.We was told that he has hlh yesterday and are devastated. He started chemo straight away and we are now in a bit of limbo not understanding what is going to happen.. I think the site is great knowing we are not a lone..xx
Tracy, I’m sorry to hear about your grandson’s diagnosis. It’s very hard.
I’ve tried to write about what to expect here as best I can, so please feel free to look back at some of our entries. I’m also happy to answer questions if I can, hlhjournal@gmail.com
There are some links at the top too to medical papers and websites that you and the parents should try to look at if you find time, some of them could help.
Evan
I have read through your entrys and was very touched reading them as i know how hard it is. my grandson is 1 month old today and has been in picu for 10 days.every day has got worse but we are trying be positive and having somthing to read about similar is comforting in away. thankyou for replying sending love and good wishes to all your family regards tracy x
Our little one Emse (aged 20 months) was diagnosed with HLH on May the 6th. Like yourselves our world was shattered. We’re fortunate over here in the UK we have the national health service and Great Ormond Street Children’s hospital in particular that are guiding us through to BMT. Regardless nothing can prepare you for what the little ones have to go through. Our thoughts are with all the children and families suffering with this terrible disease
Jason & Kelly
Evan
Sam and I just learned of Zoe’s journey. I hope you all are hanging in there. I know this is the most difficult journey you will ever have. You are certainly in our prayers. If there is anything at all we can do please let us know. Give everyone a hug for us.
Mary
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Our family is so grateful for your Website. I have read your Archives over and over. You have done an amazing job on documenting your family’s journey with HLH. It has a blessing to read your journal. My grandson’s BMT was on May 12th, 2011, reading you info has been so helpful to us during these trying times. Thank you so much.
My 2 yr old is on ecmo because of respiratory failure and currently in process of truly being diagnosed with HLH. He…..has been through so much God please help me.
I will pray for your little one.💜💜💜💜💜💜