Riding for Roses

Today has been the most utterly rotten day I have had as a parent. Spencer, our four year old son, has leukemia. The day has been a complete blur of waiting, dread, fear, and learning. I’ve cried while saying that damned word “leukemia” talking on the phone. I’ve hugged Rachel and been at a loss for words. I’ve called family and friends finding words – barely. I’ve explained leukemia to a four year old, held him while he cried about getting another blood test (fortunately the third stick in the last 24 hours was to put in a line), fasted while he had to fast before the bone marrow aspiration procedure, and agreed to shave my head if his hair falls out from chemo. I have learned a little about pre-B-cell acute lymphoblastic leukemia, its standard treatment, and what the next 3 years and 2 months looks like for Spencer.

It was one week ago that I was marveling at the courage of others at the Ride for the Roses Peloton Appreciation Dinner. Now it’s my turn.

Spencer had been running a fever since the Peloton Appreciation Dinner 6 days ago, so I took him into the doctor yesterday afternoon. No other symptoms and Spencer has had plenty of energy, but the doctor decided to run blood tests, do a chest X-ray, and stool test, just to be sure there was nothing else. Spencer and I left to pick up Rachel since I was assuming tests wouldn’t come back until today. The numbers on the blood test came back looking pretty bad, so he called us and had us re-do the blood work at an urgent care clinic to be sure. They ordered extra tests and, suspecting leukemia, called us this morning to get us to head in to Children’s Hospital of Austin to see a hematologist/oncologist. There they put in a catheter so they wouldn’t have to stick him for every sample. Then we checked into the hospital and prepared for a bone marrow aspiration procedure at 2 PM. Spencer was a champ about it and woke up quickly, wanting to watch a movie. Our friend Sharron Rush came to help and bring Rachel back home; she stayed with Spencer while we went through a round of education with the program coordinator. We received the “Pediatric Oncology Patient and Parent Handbook” which is a guide of all sorts of things we need to know about the hospital and cancer. Initially, the section on specific information about Spencer’s plan was a “provisional” section on Acute Lymphoblastic Leukemia (ALL), since it was based on the current best guess at diagnosis. The results came back at 6:30 while we were reviewing the handbook with Janet, the program coordinator.

The diagnosis is pre-B-cell ALL. The provisional section is now the official current version of the treatment plan. Tomorrow Spencer gets a port-a-cath (or “port”) installed below his clavicle with a catheter through which they can administer drugs and take blood without an annoying (and small bore) catheter in his elbow and without repeated vein sticks. When they need access, they’ll put on some numbing cream (lidocaine) and then use the port installed under his skin. The treatment plan is 1 month of intensive chemotherapy, 1 month of consolidation, 6 months standard treatment (or 6-8 months on a variation if we participate in a study going on now), and then maintenance chemotherapy out to 3 years and 2 months after start. So, that’s about 1155 days of one day at time we’ll be dealing with. I hope most of them are easier than today.

It’s amazing to watch Spencer adapt. He’s gone from being terrified of the needle sticks for blood draws to annoyed at being awakened by a vitals check and change of the blood transfusion bag. The bone marrow draw was no big deal. He walks about the room stepping over his IV and making sure it doesn’t get tangled. We’ve talked about “leukemia”, what it means to have sick blood, and what we’re going to do to try to make it better. Somehow during this conversation I found myself agreeing to shave my head if his hair falls out. At least his will grow back; mine could go either way.

Rachel is home with Jacob. Spencer’s asleep now. I’m waiting for my minister to come by with a sandwich and some comfort. I find myself thinking again about how lucky I am to have the people, friends and family, in my life who are there. The support we’ve gotten in just the last 8 hours is more than I could possibly repay, and it’s only the beginning.

I hope we can tap into whatever it is that I saw in family and survivors last week at the Ride for the Roses and Peloton Appreciation Dinner. I want to take Spencer to the ride and the dinner next year. We’ll be the father and son on the trail-a-bike.