Hi everyone,
I am Auntie Elise and some of you know that my 14-month-old nephew Gordon (gogo), has been dealing with some very serious health issues since February.
Several months ago doctors found a pilocytic astrocytoma tumor growing in his cervical spinal cord. The tumor is inoperable because of its location in his body. The tumor has caused Gordon significant physical issues, where he is unable to move his left arm and both legs. We know he is in a lot of pain around his neck, and at this point in time can not rotate his neck at all. Additionally because the tumor is inoperable, Gordon began chemotherapy one week after his 1-year-old birthday on March 20th.
Gordon is having an extremely challenging time and at this point in his life he is unable to communicate how he is feeling or his needs and is on a lot of heavy duty meds. He has had to start (and stop) an additional tumor shrinking drug, which is more experimental to try to shrink the tumor faster, in addition to his chemotherapy.
One month ago Gordon had a neurological scare and had to have a shunt placed in his brain because spinal fluid was building up in the brain as the fluid could not pass through his body due to the tumor blocking the flow, so the fluid is now being diverted to his stomach. Because as with any serious health issue, there have been complications and changes to his condition and gogo has been in the hospital now since Memorial Day weekend with a bowel blockage that has made him unable to eat. Last night it was discovered that his stomach issue is from the shunt. It has become infected and Gordon is in the ICU and will be there for an indeterminate amount of time.
Additionally, my sister’s husband lost his job because he took a day to be with Gordon at MSKCC when Gordon’s chemo port was being surgically implanted into his chest in March. And as of today, June 4th, my sister lost her job and the insurance that covers Gordon’s care.
Gordon has moved in with my mom for right now since Gordon has spent most of the last 3 months at MSKCC for his care and my sister’s home is Upstate, 4 hours away.
Although Gordon is lucky to have a very loving family and excellent care at Memorial Sloan Kettering Cancer Center in NYC, it has been a very difficult and scary time for me and my family watching Gordon’s health decline and to see how the tumor has taken over his life. He is a very different baby today than he was even 2 months ago. If you are able to donate to help my sister and her husband with the ongoing costs of Gordon’s care, great and if you are not able that is OK too. Either way please keep Gordon in your thoughts and prayers and send him positive vibes. Gordon is doing the best he can and hopefully will not remember any of this when he is my age.
Thank you for taking the time to read this and feel free to share the link. I hope you all are well.
Love,
Elise
