Sunday, May 24, 2009

quickie update that got long anyway since I'm that way

It's pretty much a madhouse here. I've started a couple of more serious posts, but they are not the only things not getting finished around here! So until my graceful self comes back, here's this:

The house is full of half-unpacked boxes, and so is the garage. The baby is a fussy little mess, which I'd like to blame on his chemo, but suspect it's just the three teeth that have broken through in the last two weeks. He did have a few nauseous hours on Tuesday, but we haven't given him anti-nausea meds since then. I haven't seen any changes in his tumor, but my tracking techniques aren't very technical. At least it isn't changing every day like it was a couple of weeks ago.

Treatment-wise, we're just in a waiting phase. His blood counts are supposed to be at their lowest this weekend, "in 7-10 days", and when they recover, we'll do another round (cycle? I still don't have that figured) of chemotherapy. I give him little growth factor shots each night to encourage his white cell production. We meet this week with a pediatric oncologist in Hershey, PA, where the state medical school is, and will split our care between there and the Children's Hospital of Philadelphia. Hershey is just an hour's drive from home, so that arrangement will be much easier on our family. I'm still a great believer in CHOP, and certainly any surgeries or more complicated treatment will be there, but chemo is chemo and I have full clean-technique confidence in the staff at Hershey. They have a children's hospital (a floor of the regular medical center) and a great local reputation. We've taken Marian to their ER a few times and stayed overnight once and had a very positive experience. I met the pediatric oncologist we plan on seeing this week during our stay before and she was very kind to us and willing to help as a closer-to-home bridge for Marian. Hope she feels the same way as we take her up on her offer with a new kid (insert self-pitying sigh).

We have had some good moments this week--visits with friends, sweet sister moments like the top photo documents (Reuben is a music lover), and the school's spring concert. I missed last year's because Marian & I were still in the hospital (they had a big cut-out of her face that her classmates held up) and I forgot how completely awesome elementary school concerts are. Every squirmy little kid up there is a delight. I took a lot of poor photos, but these are my two smudgy favorites. Audrey is blurry because she kept doing the sweetest little twirls, dancing to the songs her class and the chorus sang. She looked so pretty and happy.Conversely, I liked how this one of Marian framed her; purely by accident she is the only one not moving at that moment. It's such a bad photo, but it cracks me up everytime I see it. Her funny little face! The misbehavin' second graders!

Because I went into my oh-so-close-to-functional kitchen to get a bit more than a smidgen of Breyer's Triple Chocolate ice cream in a pretty little bowl (I really should show you some of my new pottery), I'm feeling pretty good now. Sweet dreams.


nweames said...

My "midnight" treat was a banana split. I'm happy to know things are going okay right now. Waiting is such a pain. How strange it must be have it juxtaposed with normal life like school concerts, not that it is anything new for your family. Happy to hear this time around you will be all together, I hope that continues, I'm sure it makes it a little easier -- that and the ice cream.

sallyavena said...

Sounds like we should have had an ice cream party last night. I was up listening to a wheezy kid and waiting for his ambuteral to kick in. He hasn't needed any in such a long time (over a year), so now I'm wondering, side effect from anisthesia?
Glad life can still be normal for you.

Meg said...

I was up too. Not with the kids though, my own medical issues. I am glad you are doing OK right now. How nice to have sister moments I just love those. I found Emma in Mollie's bed as she was protecting her from the thunder. Love those moments.

Mary Anne said...

I love that guitar picture. The soft focus makes the moment linger, and almost continue it seems. After seeing it, I had to get my guitar out and play. I would love to hear Audrey play! We love you.

Anonymous said...

What a cute little family! Our prayers are with you and your family especially little Ruben. Love, Aunt Velyn

Lisa Cline said...

Valerie, read about your upcoming visit to Hershey Med. We have complete faith in Hershey, and the Four Diamonds Fund there is such a miracle. Who is your oncologist? My son still has visits there with his oncologist. His cancer was extremely rare too, and they did not know how to treat it. It was called ectomesonchymoma........still get strange looks when I tell doctors what it was. Was a strange course of treatment too, since they just didn't know......he's 20 now. Keep your positive thoughts for Reuben. He's in my prayers.

Tarrah M. said...

Our prayers are with you and your little family.

Ruben is such an adorable little boy, bet your girls just love being his big sisters.