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September 26, 2006
By Margot | September 26, 2006
We’ve had two very long days in the hospital. Yesterday we were here from 10:30 am to 9:15 pm. Everything is going smoothly though slow. The port access yesterday was easy for him and he still seems to be feeling fine after two days of chemo. It’s just that we are on back on hospital time and doing a lot of waiting around. We didn’t start the hydration yesterday until 2:30. From the start of hydration it’s a seven hour day. We got here this morning about 8:15 and will be leaving around 5pm.
Sam just wiped me out in Monopoly, we’ve played Battleship, colored with our color explosion crayons and color wonder stuff, read the Vacation Under the Volcano Magic Treehouse book and even did a three pages of homework (thanks, Colleen, for dropping off his homework). Yesterday I didn’t bring enough to do and we were very bored. The family that donates books to hospital patients gave us The Magic Treehouse Knight at Dawn book and Sam discovered he really likes Magic Treehouse books. They are really good boy books because there is an adventure in every book.
Dr. Willert just came in and made my day. There was an order for GCSF shots for ten days next week which would mean that I would have to give Sam a shot in his leg every day. She just changed the order to the longer lasting shot that I’ll only have to give once. Wohoo! She wants him to go to school whenever he’s feeling up for it – she said he can go even if his counts are down as long as no one else in class is sick. I am trying to get a Child Life specialist to come to Sam’s school to explain to the kids what is going on but they have a new Child Life specialist and I don’t think she’s done that yet. They’ve promised me they will organize something though. Colleen is doing all of the coordinating with the school and has already made more progress on it than I have.
We did get a supply of Nifurtimox from Dr. Scholler in Vermont but since it’s experimental, Neil will have to fly out and sign the consent forms and physically pick up the pills. Otherwise, it will take months to clear the San Diego review board. Neil’s making arrangements for a flight tonight. Neil is also looking into ascorbic acid (vitamin C) infusions for Sam on the off chemo weeks, something we’ll have to do outside of the hospital through a nutritionist. Since we are not on a protocol anymore, we can pretty much try different things. Dr. Willert has been very open to us doing that which is nice.
Elizabeth, as usual, has been taking great care of Charlie and Andrew. I went home yesterday when Neil got here after work and fed them and brought them back to the hospital with dinner for Neil and Sam (Thanks Larry and Monica for dinner). All five of us hung out in Sam’s room until he was done with his hydration. He and Andrew played Bionicles and lightsabers. We got to see all of our favorite nurses again and they all got to meet Charlie. At one point while Andy and Sammy were running up and down the halls laughing and screaming, a nurse said “Hey bottle that up and sell it, I want some.” Lisa Bonebrake has been taking Andy to school and picking him up. Thank you, Lisa. The fact that you went back and checked on him three times is not lost on me. I’m so relieved he’s in such great hands. He was completely wiped out by the time we got home from the hospital, poor guy and I won’t be surprised if he falls asleep very early tonight. I was hoping I could pick him up from school today but again, we are stuck in hospital time and won’t get home until about 5pm.
It is taking a village to get us through a week of chemo and I know I keep saying it, but THANK YOU VILLAGE!
Margot
Topics: Progress Reports | Comments Off on September 26, 2006
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