What Day?
My postings will surely be sporadic this week and next as we are in the throes of packing up our house and I can barely make my way through the maze of boxes to reach the computer. We’ve only been here for eight years but, oh my god, do we have a lot of stuff! I don’t know how on earth people manage to move out of houses they’ve lived in for twenty, thirty, forty years. I am a pack rat, for sure. The amount of already-used wrapping paper I have stored on my third floor is embarrassing. Some of it is so crumpled that I’d never even wrap a present in it. Time for the recycling bins ….
The new house should be finished tomorrow and then a cleaning crew will come through on Thursday. I’d actually considered taking you all up on your many offers of help with that until my mom convinced me that no one really wanted to spend their precious free time cleaning my dusty house and instead offered to pay for a service. So thank my mom and dad when you see them next!
We’ll make some trips over the weekend with carloads full of gear and then the moving truck comes on Monday. So, in a mere six days, we will be sleeping under our new roof.
Austin’s doing fine. We hit a literal sore spot with one of his shots over the weekend and now he’s been fighting them, which is really a bummer because we’re still in three-a-day mode right now. But Braedan, my child who screamed bloody murder when he got his second H1N1 shot two weeks ago, has offered himself up for injections in solidarity with his brother. We gave him one — just an empty syringe poked into his leg — last week upon his request, and now he keeps asking for more!
Austin’s blood counts are down but I’m hoping they’ll have risen by the time we go for labs on Thursday so I can send him to school next week. Not only would this make the move easier, but when Mark got home yesterday and asked Austin about his day (our dinnertime ritual, often dominated by Braedan, the big talker), Austin said, “I didn’t have a day.”
“Of course you had a day,” Mark replied.
“No,” said the little one, “I didn’t go to school.”
Oh sweet boy. Time to get him back in there so he can “have a day.”
Hi Krissy,
I came across your blog recently and am the mom of a 7 year old girl, Mia, who is also being treated for relapsed Wilms in Boston. We are approaching week 18 of the 24 week protocol and went through some challenges with the shots as well. After her last 5 day inpatient they gave her a shot of Neulasta instead of having to do the daily Neupogen shots… Her counts have been great and only one shot vs. the 8 we were having to do in a week or two week period….might be worth asking about. Just thought I would mention it because its been nice to give her a break from all that they go through.
Marybeth
Hi Marybeth,
Thanks for the suggestion of Neulasta — I’ll definitely ask about that. Our problem right now is that he’s also taking a blood thinner (b/c of a small clot that formed near his Mediport — now switched to a PICC line) twice a day that can only be delivered subcutaneously, so it just doesn’t give him (or us) any break. Congrats on making it this far — I hope your last six weeks go well. Is Mia also getting carboplatinum, cyclophosphamide and etoposide? What did she have her first round? Austin had no radiation but a complete nephrectomy on the right and partial on the left plus dactinomyacin, doxorubicin and vincristine.
Good luck, good luck!
Krissy