Day +148, update from Ginger!

Time for an update!

leaving CHOC a few weeks ago

We have been going to CHOC every week on Tuesdays recently, as there was concern over Ian’s donor chimerism numbers which continued to drop (chimerism basically means a mix of cells – Ian’s and Caid’s). From the beginning we have been told that the number itself isn’t as important as the trend of the numbers, and a trend downward isn’t good.

Ian’s Chimerism chart

A quick breakdown of where his donor chimerism numbers have been – this percentage represents Caid’s donor cells:
July and August they ranged 88-86%
At the beginning of September it dropped to 80%
Mid September it was 76% and they started seeing us every week again (we had previously been moved to bi-weekly appointments)
9/25/12 –  66%
10/2/12 –  70%
10/9/12 –  73%

feeling good!

We get the results from the previous week each Tuesday, so we just received the 73% news today, and they did a blood draw to find out where the number is now. The stabilization of numbers is VERY good and we pray that it continues to hold steady. If his numbers are dropping, there is risk that HLH could reactivate. So, if they see the numbers falling, they would do a procedure called a Donor Lymphocyte Infusion (DLI) that they can do to “boost” the donor numbers, before risking the HLH flaring again. Caid would have his blood drawn and they would separate out the Lymphocytes, and give Ian an infusion of them.

This procedure can increase the risk of developing Graft vs. Host Disease. The main difficulty with DLIs is that there isn’t a lot of information for when exactly they should be given (in terms of what the chimerism numbers are doing). The is evidence of some kids with HLH who have very low percentages for their chimerism numbers, but as long as they are holding the numbers steady, they do not have HLH flare up and may not need any DLIs.

So, if you would like to pray that his numbers hold steady and we can avoid the whole thing entirely, that would be appreciated!

All three boys got sick soon after the school year started. Gotta love school germs! Caid came home with a cough and that night had a fever, from which he recovered, but not before passing it to Henry. Henry also got a fever, which sent us to the ER at CHLA for blood work. Our Hematologist/Oncologist at CHLA had recommended that I take Henry in for blood work tests anytime he got a fever to rule out HLH, since Henry had gotten so sick with the same virus that triggered Ian’s HLH and had also had some strange blood work during that hospitalization. Thankfully it was all normal blood work and we got to go home diagnosed with an ear infection.

henry and the balloons

Henry had an immune function workup at CHOC, to perhaps give us more information about his risk of having HLH. When we found out we didn’t have any genes identified for the mutation, we knew that we couldn’t have any definitive answer, but these tests were offered as something we could do to get as much information as possible to find out if his immune system is functioning normally. These tests were also done on Caid as the donor, and results came back normal for him. We are still waiting on Henry’s results.

waiting to see the doctor

Ian has been doing extremely well with his physical therapy. He has a physical therapist who comes twice a week to work with him, and he has been making great progress since being out of the hospital. He just got orthodic inserts for his shoes this week (they are the cutest!), which we are told will likely help him with his balance by helping everything be aligned properly. He also has speech therapy once a month, and has been saying more words recently.

Lastly, all our boys are a year older now! We had a small family gathering (to minimize germ interaction) to celebrate Henry and Ian’s 2nd birthday and Caid’s 7th birthday (their birthdays are five days apart)!

birthday cupcakes!

Thanks to everyone for their support and prayers!
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