tumor talk

Yossi enjoyed our exclusive love and attention for 12 years until his sister came along. Then he had surgery for scoliosis that was badly needed. For an unexplained reason he never regained his previous mobility. After these events, we started to think about changing up Yossi's activities and restructuring our routine. Despite moving to a new neighborhood, living for months in a construction zone, loosing a baby, and moving zaidy into our home, We managed to get into a rhythm. Then one day two years ago all that changed. 

We received a call from Yossi's school. He had a bump on his neck that was swelling up and so we picked him up early from school to get it looked at. i wasn't concerned at first but suddenly there we were, days to Pesach-me at home with newborn shneur zalman and dov shuttling Yossi from doctor to doctor and exam to exam. The results came, Yossi has a desmoid tumor in his shoulder.

we're fortunate to have seamlessly incorporated chemo into our routine with a daily pill via gtube but it's not without its challenges: clogged feeding tube when the pills don't dissolve well, a new awful tremor disorder brought on by the quarterly MRIs done under anesthesia, loose bowels, urinary retention and trouble bearing weight. It's not easy cleaning mounds of soiled laundry every day (hoping the smell comes out), or desperately trying to fix clogged tubes (of course  late at night).  It's painful watching Yossi come home from school exhausted,   leaning awkwardly to the side under the weight of the tumor, buckling at the knees  or shaking for hours on end (bli ayin hara it's been controlled for many months now).  finding out that the medication wasn't working was a difficult moment for us. Baruch Hashem there is another medication now available-he's been on it for several months and the first scans show that the tumor shrunk significantly. We are so relieved that things are finally heading in the right direction and we continue to daven for the tumor to go away completely and for no side effects from the chemo and the anesthesia.

When I sometimes mention it in passing I'm always surprised that its the first time people are hearing about the tumor. That's because I've never told anyone- with little kids and high needs kids at home, there isnt much time left for socializing. we continue to daven for the tumor to go away completely and now that you know, you can daven too!