On Sunday, I took Yirmiyahu to the eye doctor for an exam and was happy to hear that his eyes look great! I don’t have to go back for another year.
Then this morning I took Yirmiyahu to the pediatric hematologist for a follow-up visit.
A number of people have asked me why he needs to go to a hematologist (a hematologist is a blood doctor). The reason is that when he was born, he had an extremely high leukocyte count – 95,000. About 10% of babies with Trisomy 21 are born with this condition, known as transient leukemia. The hematologist told me, after we got the results of the genetic testing, that there had never been a question in his mind that Yirmiyahu had T21 due to his elevated leukocytes – he said it’s a medical phenomenon seen only in the Down syndrome population. Yirmiyahu received very strong antibiotics to counter this within a short time of being born, and we were very happy to see his leukocyte count go down to the normal range of 20,000 within a few days.
However, children who have transient leukemia are at a much higher risk for developing regular leukemia. As a result, we are in regular contact with a pediatric hematologist to be sure that his blood work continues to be okay. The purpose of this is that if, G-d forbid, there were signs of a problem developing, it would be caught at the very beginning. When leukemia is treated in the beginning stages, the prognosis is excellent.
Today’s appointment was super fast – now that I have the rhythm down of what paperwork to get when, it goes much faster than the first visit. Basically we just do blood work, wait ten minutes for the results, and show it to the doctor. But with all the traveling and waiting for buses, it’s a six hour round trip journey. But the important thing is that everything is okay. We can now extend the time between visits to 3 months, and he was able to schedule my next visit to coincide with the day I have another appointment at the same hospital, which is really nice!
I feel like I’m finally at the end of all the initial testing and medical follow-up we instructed to do – but in January, we start the follow-up cycle, since for a number of tests we were told to come back after six months!