Ryder's brain tumor is shrinking!!!
We learned this news in May right before Ryder turned 14. And the ONLY reason this is occuring is because Ryder is in a clinical study taking an experimental drug currently used for cancer patients to shrink cancer cells called Everolimus or RAD001. Ryder can participate in this study because Children's Hospital in Oakland went through the exhausting process of bringing this clinical trial to Tuberous Sclerosis patients. Ryder was the first patient enrolled in Oakland!!! Not only are his brain tumors shrinking but also his facial tumors have noticably shrunk too. This means no more laser facial surgery at UCSF. AND, they are finding the drug keeps seizures under better control and since Ryder hasn't had a big one since October 20th of last year, I'd say its working!!! What a blessing for him.
Like last year, this year's walk on September 25 will benefit the Jack and Julia TSC (Tuberous Sclerosis Complex) clinic and Children's Hospital in Oakland. Since Ryder started the study in January, the hospital has become our second "home" in lots of ways and the importance of the work they are doing for patients like Ryder is phenomenal. I can't say the road has been completely smooth though with many blood tests, MRI's, 24hr. Video EEG's in the hospital and the medications side effects which make him shaky and tired, but the end result has been nothing short of miraculous. RAD001 is a medication that once stopped will cause the tumors to grow back and we don't really know the long-term effects yet but for now we know Ryder will not have to have brain surgery in the imminent future or facial surgery and we've avoided seizure trips to the ER. When we've had to plan our lives so much around his health, this drug is giving us some freedom you can't even imagine.
Ryder has had a phenomenal year! He just completed the 7th grade at Willowside Middle School. He attends the SDC (Special Day Class) there and loves it! He was tested last year and the results are that he is reading at the 3rd grade level and math is still pretty much addition and subtraction. Ryder's most difficult areas are memory and comprehension. These have always been hard and I'm sure his seizure medications don't help, along with the T.S. At school he participates in P.E., has taken a couple art classes as his elective and American sign language. Next year he'd like to try multi-media and more art classes.
Outside of school, he participates in a Special Needs Acting Class at the 6th Street Playhouse (which he LOVES) and may even have a tiny part in their kids production of "The Grinch" in December. Additionally he is a member of Special Olympics almost year round now with basketball, bocce ball, bowling and right now he's playing softball. In the spring he plays Challenger Little League and is usually the big man on the team since he's now hit 6' tall! A HUGE accomplishment this year was learning how to ride a bicycle!!!! Ryder attended a camp in January at Sonoma State University sponsored by United Cerebral Palsy of the North Bay and on day three of the four days he was riding a two-wheeler! We are so proud of him and its so fun to see him tool around our yard on his bike every chance he gets. He's also learning how to ride a dirt bike (much to his dad's delight) and again, a huge accomplishment for him.
Medically, Ryder is doing well. He's taking two meds for seizure control, the study drug and a medication to stabilize his blood pressure. Since he has cysts and tumors on his kidneys, they can cause elevated blood pressure so his nephrologist has him on a small dose. He takes a lot of pills (18 in the morning and 5 in the evening). He seems to have several "weirdies" daily which we think are small seizures but don't debilitate him at this point. He will have another MRI July 23 (we'll get to see if his brain tumors have shrunk more) and will have a two day night at the hospital July 27 & 28 testing via a VEEG (video EEG). For this visit they will spend a couple hours glueing little nodes to his head, then wrapping his head up and hooking him to a machine which will monitor his seizure activity via the data and a video camera for 24 hrs. This is always a fun time:).
Ryder and others living with Tuberous Sclerosis is why we walk and raise funds for the Jack and Julia Clinic at CHO. This year we are setting a goal to raise $5000 by asking 200 of our friends and family to donate $25 each (or more if you feel inclined) to help raise funds to keep the clinic going. Bill, Ryder and I will be walking that morning in Vacaville and if any of you would like to join our team, please let us know!!!
For some of you we know that finances are difficult right now and giving is not easy. We ask for your prayers that our walk is successful and that our medical community and legislators continue to work at funding and finding a cure for this horrible disease.
If you are able to donate, donating through this website is simple, fast and totally secure. It is also the most efficient way to support our fundraising efforts. If you are more comfortable writing a check, please make it out to "Children's Hospital Oakland" with "TS Clinic" in the memo portion. Please consider also forwarding this to anyone who you think might want to donate too.
With much love and gratitude,
Bill, Cindy, Kasey and Ryder Schalich