Friday, May 29, 2009

Pre-treatment tests are done

Two days at the hospital this week. The first, to put in the port through which the medicine will go; the second, for follow up MRIs. Clay was a trooper for both days. We did learn that scheduling an afternoon MRI is not great for a 3 year old, since they cannot eat or drink anything all day until after the test. The first thing Clay said when he woke up afterwards was "I can have a doughnut?" Here he is in the recovery room eating a ham sandwich. Thank you to the "Thursday night supper club" for a wonderful meal waiting for us at home.

Some positive news: The brain MRI showed the tumor had shrunk down to half its former size. Apparently the bleeding made it swell; 6 weeks later it is smaller and has fallen to a safer location away from critical brain functioning. Clay's surgeon said "If only he were already under treatment we could take great credit here!" The spine showed no change - some coating of tumor cells- but no progression of disease in 6 weeks. So, we get a break and don't start chemo until next week. The first series will be for 10 weeks, one day each week at the clinic closer to us in Falls Church. JD in particular will miss the drive we have been making through the city to Children's Hosptial (especially in the rain, at rush hour).

Sunday, May 24, 2009

Where we are today

We know many of you have only heard bits and pieces of what has happened. On Easter weekend Clay was playing with his cousins, and he fell and hit his head. Since he immediately started throwing up, JD and I took him to the emergency room. A CT-Scan revealed blood in his brain, which is life-threatening as it increases intercranial pressure which can cause a seizure. Rushed (well, not really -- it took 4 hours to get the ambulance - but that is another story) to Georgetown, the neurosurgeon on call did an emergency EVD procedure (a tube to drain fluid) to get Clay's pressure back to normal. Then, at 4:30 a.m. on Easter Sunday, they took him for an MRI of the brain. A few hours later JD and I learned the blood was caused not by a fall, but by a tumor that had hemorrhaged.

We transfered Clay on Easter Sunday to Children's National Medical Center. Almost 2 weeks later they were able to remove the EVD drain and send us home for a period of recovery for Clay and planning next steps for the rest of us. Many thanks are due to the amazing Dr. Amanda Yaun, Clay's neurosurgeon who not only performed the biopsy, but was brilliant, and kind. She even made a head bandage for Curious George to match Clay's. They don't teach that in medical school, do they?

It has been a terrible, exhausting month, made better by the friends and family who have surrounded us. Meals, phone calls, packages for both Grace and Clay, endless love and support and prayers. It has been difficult to return calls and e-mails, so please know every bit of help has been appreciated. I am amazed at the kindness we have received --even from people who didn't know us before this started--but have rallied to our side with advice on protocols, doctors, and expediting hospital transfers on Easter Sunday (no easy feat).

We will do our best to thank you and keep you informed through this blog. Next week we will begin "treatment" (chemotherapy) after two more MRIs to check the current status of things.