UPDATE TO MICHAEL'S FUND
On Monday we had our brain/spine MRI check. It almost didn't happen as scheduled, because some employee didn't do their paperwork correctly. We made some noise and they fit us in just fine a few hours later. It was all routine and Michael picked IHOP for dinner that night. He was brave as usual.
Then Steve got a call from Dr. Finlay on Tuesday afternoon. He NEVER calls. Steve called me at work. The MRI showed new tumor growth in a small area of the original tumor bed. Michael's tumor has come back. It feels so wrong to even type that. I am so angry right now and it has been a very difficult week for Steve and I. I'm still in shock and so, so mad.
We did meet with Dr. Krieger this morning. The best way to try to beat this recurring tumor type is more surgery and radiation. We talked about the details of surgery. It will be difficult and Dr. Krieger really won't know the full scope until he does the surgery. The new smaller growth is in two adjacent areas, one next to his brainstem and the other in a cave-like space next to it, outside of the brain tissue. One part of the growth is in an area where some main nerves are too. It is higher than the original growth, so the incision area will be on the left side, not the back of his head. None of this is easy to follow, but we know Dr. Krieger will do everything he can to get the best result for Michael.
We did tell Michael that he will need another surgery. He is scared and doesn't want to do it, but is doing well overall. He is just enjoying 1st grade, as he should be.
We have scheduled his surgery for Oct. 11th.
Until then, we are trying to do many fun, normal things. We are off to a Dodger Game with the Cub Scouts tomorrow!
Steve might add more details later, but for now I wanted to update everyone and ask again for your amazing prayers and support that you have all given us all these years. We need them in large numbers and thank God that we are surrounded by so much love. Go Team Super Michael!
Love to you,
Michael is our first and only child. He seemed entirely healthy in every way until last June, at about 10-months old, when he started tilting his head to the right. Our pediatrician suspected something serious, and within a few days Michael had an MRI. We were told that the head tilt was being caused by a large tumor pressing against his brainstem—which was diagnosed as an ependymoma. Fortunately it was operable, although very difficult to get to, and the wonderful neurosurgery team at Children’s Hospital Los Angeles fully removed the tumor. There are some deficits from the surgery that Michael is still dealing with, mainly due to nerve damage that affects his hearing, eyes, and face, but this is typical and much of it should heal over time. Without question, the surgery was very successful.
We can’t possibly explain how scared, confused, shocked, trapped, and angry we felt during these first few weeks as we processed all this while Michael was recovering from the surgery. But at some point we accepted this as a new reality, and have pushed ahead and made it through five months of further treatment.
The tumor would surely grow back if we didn’t continue treatment with intense chemotherapy and radiation, so this was a relatively easy decision. Michael underwent four rounds of chemo, with the last one being a “mini” bone-marrow transplant. His radiation therapy began during the first week of December, which will continue daily for about six weeks. Ependymoma is not very responsive to chemotherapy, but radiation has shown to have fairly good results when the tumor has been removed—the prognosis can be as high as 60-70%.
Despite all that he has been through, Michael is doing remarkably well. He is incredibly tough. We are also managing pretty well, which has become easier as Michael has felt better. Colleen has maintained her job working as a graphic designer for Frederick’s of Hollywood, and I take care of Michael during the day. I was nearing the end of my graduate studies at USC in music when Michael was diagnosed, but it was necessary to temporarily withdraw from the program, as well as stop teaching, in order to care for him.
This is a difficult time for our family, both emotionally and financially. We are proud that Michael has been named a TFF Kid with the Talbert Family Foundation, and are grateful for their help and support as we work through this. And we truly thank you for the prayers and financial help to get us through this time.
Steve and Colleen Gates
100% of the monies donated to the fund will be donated to Michael and his family to help his defray ongoing expenses for his treatment.