Saturday, December 3, 2011

Records and Riding in Ambulances with a Boy

Not including the 26-day stint in S.F. for transplant, William has set a personal record of consecutive days in the hospital: 18 and counting. And it's getting a little old. Okay, big old!

The PICU kicked him out on Monday. That's a good kind of eviction. The floor and his regular nurses anxiously awaited his return. Floor is hospital lingo for the regular rooms. His favorite night nurse even had dibs on him as soon as he got out. Since then it's been a bit of a holding pattern all week, waiting for the green light from the surgeon and oncologists to start chemo---the main issue being the periodic spiking of low grade fevers. Thankfully, blood cultures remain negative. Then his left ankle took a turn for the worse after a heroic late night walk around the floor on Monday night to show off his rapid recovery. The following day he was in so much pain he wouldn't let anyone touch it. The physical therapist put him on non-weight bearing status until further investigation. An x-ray on Wednesday revealed his ankle tumor getting bigger. The surgeon and oncologists agreed the fevers were likely due to the effusion and junk still in both lungs. Something that only time and increased activity will truly remedy. So the combination of the increased tumor growth and determined fever source, chemo began Thursday night. We cheered! Who cheers for chemo? We do. Because that means we can actually estimate the remaining days in the hospital. Five days of chemo will hopefully earn us a get out of jail hospital card for free. (We won't talk about how much a 3 week stay which included major surgery, 11 days in the PICU, chemotherapy... really costs!)

Other very noteworthy news: William took an ambulance ride! It was his first and what a nice change of pace that was. Sound crazy? Let me explain. In an effort to aggressively go after his tumors, William will be undergoing radiation and chemotherapy at the same time. The radiology oncology center is at the new hospital. We are stuck at the old hospital (there are other adjectives I could use for physical condition of this hospital). This necessitates an ambulance transport each day for radiation. Radiation will be on his left ankle for now in order to let his abdomen heal a little more. The next round of chemo will include the abdomen radiation. On Friday, William had his simulation appointment where they do all the measurements, radiation calculations, foot positioning mold, and tattoos. Yes, although last time was unpleasant, I let him get four more tattoos. But I'm holding to my word that he's only allowed to get dots!

William had a great time. Our paramedics and nurse were lots of fun and the paramedics even turned on the lights and siren for him.

William is doing a great job with his physical therapy. He's is a wonder with a walker! And if you saw his biceps, you'd be impressed he even has strength to hold himself up! The kid is skinny, skinny!

Tuesday is our anticipated freedom day. If all things go as planned, we'll be able to leave the hospital and go straight to radiation and then home. (And should also make it home in time to do school pick ups!) I even scheduled his radiation appointment time on Wednesday to be first thing in the morning and Thursday's appointment to be the last of the day so we can sneak our family up to Tahoe for 2 days and a night. If I could, I'd even schedule a fresh snowfall up there for some sledding, but I won't push our luck. We are all so very, very anxious to just be together as a family and enjoy some peace and quiet.

So if we must set records, we hope we can find some things to celebrate. I think heading home is reason enough to always celebrate. May the next few days go exactly as anticipated...fingers crossed with a sarcastic grin, and hopeful heart.


  1. It's so good to see photos -- especially of William smiling. That's so encouraging! Hugs to all.

  2. I love your smile, William! I love the fact that you took Simba with you on the ambulance ride. I love the fact that soon I will get to come and help too. I miss you all so much--but it is also good to have grandpa home now. Can't wait to see you, and to know that you will be a thome in Folsom when I see you next!