Riding for Roses

Over the weekend I received a bunch of LAF Peloton Project emails. They’ve raised the bar again. Fundraising minimum for a green jersey is $7500, polka dot $15,000, and yellow $25,000. I have been brainstorming fundraising ideas and will soon be seeking assistance in running some events, as well as sending out mailings begging for money. Spencer could really use the donation to fight cancer

Monday was a procedure day. Halfway through Interim Maintenance 1 there is IV chemotherapy with Vincristine and IT (intrathecal – spinal) chemotherapy with methotrexate.

The day begins at 6:30 when the phone rings. Our nanny is sick and can’t come to take care of Jacob while we take Spencer to the hospital. Our options are slim. Bringing Jacob would make for a very long, hard day for everyone. Rachel still can’t drive the van and can’t stay home to take care of Jacob. I need to drive the van. In desperation, Rachel calls Gregory, a neighbor who goes to our church, and he is available to take care of Jacob. I think the last time he took care of a baby may have been over 25 years ago. He is a brave and generous man.

We head in to the hospital and first step is Spencer’s pre-procedure checkup and IV chemo at the oncologist. Today, Dr. Sharp is not in, so we have Dr. Wells. We also are using our new insurance for the first time at the hospital (second time at the oncologist) and running through deductibles and out of pocket expense. Today costs about $1000 for doctor and surgical fees; the anesthesiology bill will come later. The good news is we have a pretty low out of pocket maximum on the insurance, so we will stop paying at all sometime during the first quarter.

Spencer had a little bruising this week, but the CBC is great – everything where it should be, platelets are 215,000. Dr. Wells says “he earned the bruises” from being back to playing full tilt and nothing to worry about.

Yesterday, Cartoon Network had a short “Teenage Mutant Ninja Turtles” marathon and I copied the MPEGs from my ReplayTV to the Mac so Spencer could watch a couple of episodes while waiting for surgery. Insurance paperwork and minor confusion over who will do the surgery keep us from getting bored. The hospital thinks Dr. Sharp is to do the surgery. This would be difficult as he is not in the office and Dr. Wells is covering. There is some debate as to whether the paperwork needs to change until someone figures out the “or other associate of Specially for Children” in all of the forms includes Dr. Wells. Spencer gets to push his saline and heparin at the doctor visit, and also gets to push the anesthetic for the procedure. Today he passes out before getting down to “4” on the syringe. The children’s day surgery is busy and Spencer’s recovery nurse has another patient who has some difficulty (don’t know if that means actual problems or just an upset child), so we don’t get to see Spencer until he is out of the recovery room. As we enter the room, he is trying to climb out of bed because he is ready to leave 30 minutes after waking up. We stay 15 more minutes while Spencer has a second popsicle (he had one in recovery) and a pudding, and then pushes the heparin to clear the port-a-cath before de-accessing. We are on the road before 1 PM and stop at Wendy’s for lunch and to watch the rest of the Ninja Turtles that got interrupted by having to go to surgery.

While we were finishing up at Children’s Hospital, Gregory and Jacob stopped at the Kaulfus’ house and we stop by to pick up Jacob on the way home. Spencer, already feeling fully recovered, asks if he can spend the afternoon there with Olivia who is his age. The side effects from this chemotherapy seem to get a tiny bit worse each time Spencer has it and an hour later he has diarrhea, but recovers quickly and begs to stay with Olivia, so I pick him up at 4:30. Amazingly, he still feels great and still wants to go to his swim lesson.

When we scheduled his swim lessons for 5 PM on Monday, we figured we would miss a bunch during delayed intensification and on procedure days. Today, however, Spencer is primed to go. His new swim instructor, Andrew, had kidney cancer as a child and had to have his left kidney removed. The two of them click and Spencer works hard through the lesson and gives Andrew a liveStrong wrist band at the end of the lesson. Spencer is now up to wearing eight wrist bands, two on each limb. This way, even when I don’t have a handy supply of wrist bands to give away, Spencer can give one to “someone who needs one”.