So, where are we?
First, a few updates. Zoe had a good day on Friday for her VP-16 dose. No adverse reactions this time, they gave her Benadryl at the start and did a 3hour drip instead of 2 or 4, and it worked out just fine.
Michelle was able to meet with Dr. W and the good new news is that Zoe’s immune system has made a sufficient recovery to put her out of immediate danger of infection from normal day-to-day life.
We are allowed outside. We are allowed to eat in (uncrowded) restaurants. It’s like Life 2.0.
The pertinent number, the one that gave us this new freedom, is her SEG Neutrophil count. Hers is 2.1, where 1.0-9.0 is considered normal. Great, great news.
Other vitals:
- WBC: 6.2 (way up)
- RBC: 2.73
- Hemo: 8.3
- Platelets: 447k
Where does that leave us?
Well, right in the middle I would say. We’re now mostly clear of the danger from the onset of the disease, and with continuing treatment we should stay clear for a little while. The fevers are gone, the organ enlargement is gone, the histiocytes in her spinal fluid are gone, and her platelets are well clear of the danger of internal bleeding now.
Once we have confirmation about the genetic testing, we will know more about the Stem Cell Tranplant, but we’re working on the assumption that she will need one to be cured. We have a huge decision ahead, depending on test results, as I’ve mentioned previously. It’s a little scary, but we feel considerably better than we did a few weeks ago. We know more now, and we’ve had more conversations with our doctors to answer questions we didn’t even know we had back when Zoe was sicker.
Our next step is to meet with the doctors at Duke, ask our long list of questions, and try to come to a firm decision about the transplant. That should happen late next week, and we hope to get news on the remaining genetic tests “soon”.
In the meantime we’ll be keeping up with Zoe’s meds, checking in twice weekly with the hospital, and hoping for continued improvement.
And I’m (not so) secretly hoping the chipmunk cheeks take a hike too.
httpv://www.youtube.com/watch?v=8UBP1Qgl7kE
HLH Journal 
Wonderful news! Beautiful video!
Margaret and Gene
Very good news! It was so exciting seeing the video of Zoe. She seems to be so happy!!
It is nice to know that she can enjoy some fresh air and your family can get out a little more!! Maya is getting so big! Take care and thank you so much for the updates!!
Love to you all,
Gail
I see that Zoe was also very happy to get home! Her numbers are great. She seems to plow right through these nasty treatments with quiet determination. What resilience she has and this will be such a great asset for her as she works toward recovery. Love, Mara
What a great video……you have two beautiful girls…….
So happy that Zoe’s vitals are improving…..she is a fighter!!!
We were so happy to see the video and get the latest information.
I have been checking every day to see how you are all doing and this was really good news today.
My love to you all…
My son which is currently being treated for HLH as well just came off the steroids two weeks ago and his chimpmunk cheeks are half way down. I missed his old face. It’s great to see it back.
Thanks everyone, and thanks Lorena for that bit of info, it’s good to know what to expect a bit. Zoe’s last two weeks of steroid start today, so we’re on a bit of a countdown around here. No steroids should be less grumpy, less plump, and less hungry (mom is worn out). 🙂
Hello Evan. I am so happy to hear that Zoe is doing well. I too have a daughter named Lauryn who was diagnosed with HLH back in March 2010. We are still going to Duke for chemotherapy and labs and are in the process of being weaned off of the steroids. I have been talking to the transplant team and finally got screened myself on Friday to see if I am a possible donor. This entire process has been one long, scary, roller coaster of a ride. We were at Wake Med Hospital for 4 days before getting transported to Duke. Once there, it took them 3 days to come back with the possible diagnosis. I’m not sure if Zoe was admitted before or after Lauryn but I just wanted to say thanks for possibly leading the way and for the journal post. The bone marrow/stem cell transplant kind of worries me. By the way how is Zoe sleeping through the night? Lauryn wakes up most nights every hour wanting to eat. The pacifier just won’t do.
Hi Tisha, great to hear from you.
I’m sorry to hear about your diagnosis, but it’s a gift that they caught it in time. It sounds like we may be seeing more of you and Lauryn if you are still at Duke. We’ll be in 5200, the Pediatric Transplant unit, in a couple of weeks and in the day hospital in the meantime.
If Lauryn is on steroids now, which I expect she is, she will be very very hungry. Drink lots of fluids to keep up, my wife Michelle was pushed really hard during the steroid phase to keep up with Zoe. Zoe sleeps through the night very well now and nurses a little bit, but it’s much easier than it was on the steroids.
Feel free to email me directly or comment if you have any questions at all. It’s been a great help to us to hear from other HLH parents, I feel sure it will help you too.
hlhjournal@gmail.com
Evan
Hi Evan. Thank you so very much for responding. I do have a question about the transplant process. I was recently told that so far they didn’t have any matches for the BMT but they have a few for possible stem cell transplant. How long did it take from the time the did the cheek swab to the time they actually found a match? I try not to worry about it but sometimes its hard not to. Also do you know what the recovery time is after the transplant. I haven’t talked to Dr. Driscoll in about a week. I tried t
o email you at the address you provided but it came back undeliverable. Thanks a million!
Try hlhjournal@gmail.com if you need to for any reason, it should work.
We had a stem cell match back very quickly, but I forget how long it took. A week at most I’d say. The marrow donor match could take much longer, but we actually did that after we eliminated our older daughter as a match and determined we’d need to use stem cells instead.
Recovery time varies a great deal. It really depends on what if any complications the child has, and whether they do a normal conditioning process or a reduced intensity process. Standard time frame is 100 days from the date of transplant to return home. Half or more of that time will likely be spent nearby the treating hospital but not IN the hospital.