(Hebrew name: Rephael Zakkai Avraham ben Yakira Avigael)
רפאל זכאי אברהם בן יקירה אביגיל
Thank you for visiting our website - please visit our Background Story to hear about our amazing and unique son. -Kira & Ariel Nurieli
Please Go to the site for the Journal, Guestbook, Photos and to make a donation to help Zakkai Nurieli.
Zakkai Nurieli was born on 10/16/10, 8 Cheshvan 5771 at around 1:30AM.Technorati Tag: Zakkai Nurieli .
He was a healthy baby, nursed well, grew well, and has brought joy and excitement to our lives.
On the second week of February 2012, the week after Tu B'Shevat 5772, he suddenly showed signs of his lower body slowing down - first he was tripping, then not walking, not standing, etc. Within a matter of days, his legs were virtually paralyzed. While the pediatrician didn't seem alarmed, thinking this was just a fluke-virus, we were sent to the ER to check what was going on.
A few hours and an MRI scan later, we were told that our son has cancer and the reason he stopped feeling his legs is that the tumor was pushing far on his spine. The part of the tumor that was putting pressure on him was removed in an incredibly successful surgery - within days he was walking (with assistance), pulling himself up to stand, and generally exhibiting remarkable resilience and mobility. But we sat waiting for 3 days to find out what this cancer is...
The news wasn't comforting: he has a unique case of myxoid chondrosarcoma - as far as we know, the only documented case of a baby with this cancer in the entire world. The plan of action? Uncertain. Nobody has ever seen this - no baby has ever had this. No doctor, no specialist, no facility has any experience on which we can rely.
This cancer is highly resistant to treatment and must be removed surgically... which is complicated - it lives right in his deep chest cavity - kissing his aorta and his bronchus and has already eaten into his upper spine and back muscles. A surgery with safe margins is impossible at this size/location. And chemo and other treatments may not shrink it away from his vital organs.
AND YET we are optimistic - there may be some indications that older children with this cancer had some response to high-doses of chemo. If chemo can shrink this cancer just a smidgen away from his organs, then it could be surgically removed.
We are praying and betting against the "odds"... we invite you to join us in hope and prayer and any other support that you may want to provide (for donations, please consider online donations to: Chai Lifeline, who have already been amazingly helpful, or our synagogue sisterhood at Anshei Shalom in West Hempstead - enough thanks cannot be expressed).