Merry Christmas from Jonah (25-months post-BMT)!
Jonah is now two-years and 4-months-old, and exactly 25-months post-BMT for HLH today. We have been waiting for the results of his latest blood tests from this month before posting this update. His routine tests (blood counts and electrolytes, etc.) remain normal, and the level of his good protective antibodies (immunoglobulins) continue to improve with only one subset (IgA) being slightly below normal. His latest whole blood engraftment studies have dropped from 72% to 66% over the past 6 months, and the more detailed multilineage engraftment studies from SF maybe showing a similar trend, after they were stable previously for 9 months. Obviously, we are at least a little worried, but Jonah's docs are not yet concerned, and we will be running the tests again in March. *** Please pray for improvement in his bone marrow engraftment!
Thankfully, Jonah's immune system appears to be recovering well, and we have made up time with his two-year-old vaccinations which have been significantly delayed because of his illness and BMT. Our entire family has been fortunate enough to find and receive the H1N1 and seasonal flu vaccines. We strongly urge all of you to obtain your own as soon as possible- not only to protect yourselves, but perhaps more importantly, the children and pregnant women around you! We have gradually begun to unlearn the now fully ingrained obsessive-compulsive cleaning habits of a BMT family, and continue to increase Jonah's exposure to the world with plans to release him to daycare in the spring. Yes, to the microbiological culture medium known as daycare (but not without "some trepidation')!
Otherwise, Jonah looks fantastic and is a very affectionate and friendly toddler. He finally began speech therapy over the summer, and his expressive speech delay is improving. However, he has begun to demonstrate an early talent for navigating and operating iPhones and iPods, and for tormenting his older brother and saving BM donor, Ethan. Daycare will be a good thing for Jonah- if nothing else, he will learn that not all kids are as patient, gentle and forgiving as Ethan. Jonah has also ironically become a great eater, given our vivid memories of his vomiting and dependence on tube-feeds during and months after his BMT. He often out-consumes Ethan at mealtime!
Ethan is almost 5.5-years-old and is doing well in Kindergarten. His homework does not seem to be a chore to him yet. He has continued
swimming and karate lessons, and began piano lessons this fall. He is becoming a great backseat driver, and relishes a good debate with his parents- not exactly traits we want Jonah to emulate. Did we mention he was 5-years-old? Not surprisingly, he chose to be Indiana Jones for Halloween, and his preoccupation with video games continues unabated.
We remain sincerely thankful for your compassionate support, friendship and essential prayers! Our Lord is faithful, merciful, and powerful!
Our ongoing prayer requests:
1. For Jonah's bone marrow engraftment to increase permanently.
2. For Jonah's protection from all dangerous infections.
3. For Jonah to catch-up and steadily improve his development, and especially his speech.
4. For the other children and their families who are battling HLH.
Above all, we thank Our Lord for the Saving Gift of His Son during this and every Christmas!
Love,
Nat, Jeannie, Ethan & Jonah
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