Thursday night was a trip to the Children’s Cancer Center for the whole family. Easter party #3 for Peyton this week. I get the feeling that she’s going to start thinking that everywhere she goes she should get a basket full of eggs and candy…and who are we kidding, she probably should, the spoiled little monkey. There was a dinner provided by Boston Market and general chaos as there were many more families there than normal for the Thursday Night Family Oncology Support Group. The Easter holiday party and the fact that most kids didn’t have to go to school on Friday made for a good showing of people.
After we all ate, the kids were rounded up for games, crafts and various mischief, the parents went up to a separate room for coffee and conversation. It was almost like an AA meeting “Hi, my name is Anissa, my daughter has leukemia, we’ve been in treatment for 9 months”. But it was so much more than that, we shared stories of diagnosis, updates of treatment, we commiserated on the difficulties as parents of kids with cancer….and kids in general…we were able to really just say “Hey, there are days I’m not handling this well, I’m lucky to get out of bed and brush my teeth” and everyone there nodded their heads in understanding. It was awesome!
When our turn came up I brought up the fact that we’d just gotten the info on Peyton’s leg pain and the possibility of peripheral neuropathy, and heads just flew to turn around and give us assurances. One mom told us that hers was bad and there was physical/occupational therapy involved, another mom told me her son’s was mild and went away gradually on it’s own. It was just so comforting to see the fact that others had been there, gotten through it, empathized with our fears and were able to offer encouragement. There was so much unexpected laughter in the room, there were also some stories that just broke my heart. We met a couple with a son who is going through the exact same protocol as Peyton and they were able to share a lot about the cranial radiation that lays ahead of us, the procedure and the side effects.
This is what a support group is.
Of course, halfway though the grown-up part of the evening, Peyton came tromping up the stairs and crawled into my lap, the worst of the worst had happened.
“Mommy, the Easter Bunny is downstairs. He’s riding a scooter. I don’t love that Easter Bunny.”
A scooter riding Easter Bunny….she at least let Santa stand next to her for a picture, she’s doomed for Easter forever.
Nathaniel and Rachael had Good Friday off of school today. Peyton had a clinic visit with double leg shots of Peg-Asperiginaise….fun for everyone! It actually went very well, they were well equipped with volunteers and the girls played hide and go seek for a long time with them. Nathaniel loves the fact that he just has time to sit down and play video games, so I let him. Peyton screamed like a banshee for most of her needle-time. It was worse than the average port-accessing and Peg shots, but we got through them, she got more eggs…Easter party #4….high terror Easter Bunny visit #4….you’d think she would get used to him by now, but alas, NO.
After we left the clinic, I took the kids to Cracker Barrel. We saw lots of our friends there, Peyton was wearing her special apron and greeted with smiles and hugs. Like her own personal Cheers, I half expect a theme song to play when she walks through the doors. But the staff is always cheerful, full of good wishes and smiles for our family and I cannot think of a restaurant that has a better crew working.
After lunch, we added two kids to our numbers, Lily and Jesse. They joined us for an afternoon of swimming and ice cream cones, and after we got home, the neighborhood kids starting showing up to play basketball. It’s fun to be the house where the kids come! I love it, and we have some fantastically fun kids in our neck of the woods. Which, let me tell you, it’s a good thing they’re nice because future NBA players they are not. But they have a good time playing and for a group of boys, they were really nice to Rachael and that says a lot about the quality of kids they are.
Peyton promptly passed out after we got home from DQ. I was a little worried that she’d be up all night, but she’s also full of chemo, had a very emotional clinic day, I intentionally wore her out at the pool and stuffed her full of ice cream…I’m surprised I didn’t pass out too. She woke up around 9 pm….joy!….but she’s still in bed, lazing around and watching a movie. She doesn’t feel great, complaining that her tummy hurts. She was rubbing her calf and tucking her legs up next to her body and I asked her if her legs hurt and she said yet. I hate to do it, but I dipped into the prescribed codeine for pain. I guess if the doc thinks it’ll do the trick I will let her have it, but it also seems like such a heavy narcotic to give a 3 year old. I also know parents who have to give their kids morphine for their mouth sores, so it’s about making sure they’re comfortable and pain-free, which is the most important thing.
We got 3 new members for our Relay for Life team, that brings the current member total to 32!!! We’re halfway to our donation goal of five thousand dollars. Lily and Jesse are having a lemonade and cookie fundraiser in their neighborhood tomorrow. Lily made a handmade flyer that they made copies of, with a picture of Peyton, and she went door to door to let them know the sale was Saturday morning. They are so excited to raise some money for Team Peyton and were shocked and thrilled when neighbors started showing up with money in hand before the first cookie was ever baked. They’ve already raised sixty-eight dollars and haven’t sold a thing yet, and now they are seriously jazzed about what they’re doing!!
The kids and I are going to head over there to help out with the lemonade stand in the morning and to add some serious cute-factor with Peyton there. Right after that we have a roller skating birthday party (none of us roller skate with anything resembling something you might call skill) and then in the evening we are heading to the St. Pete Forum for an arena football game. The Storm team has donated five box suites to the Children’s Cancer Center and we are totally going to take them up on some tickets! We’ve never been to an arena football game, so it should be pretty exciting.
I got the ok from Dr. Kerr to take Peyton to Sunday morning Easter service. She and Rachael both have beautiful dresses to wear and I have no idea what Nathaniel is going to wear. Interesting dilemma since he already treats clothes shopping like a root canal. He’s 9!! At 9 shouldn’t you still be thrilled to be getting new things? I think so too. But, Dr. Kerr said it was ok to head to the super-full church service even though her counts are borderline….she says to me….you gotta love oncologists with a sense of humor…. ”don’t sit next to anyone who’s coughing”. She cracks me up!
f.r.o.G….fully relying on God
—Anissa
Ps….Since I figured out the “contact me” issue on this site I’ve gotten a number of great emails. I truly hate to think of all the people who’ve sent an email and just thought they got ignored…ugggg!! Seriously.
