Yesterday, I took the kids to Plant City for the Strawberry Festival. Rachael was a little miffed because she doesn’t eat strawberries and didn’t get why they can’t have a Banana Festival. I told her we might just have to have out own Banana Festival at home. But we did eat Strawberry Shortcake, we bought a Mancala game with the most beautiful marbles (it’s a marble game, I don’t play, but the kids assured me that I could be taught), and the kids rode all the midway rides they could stand. Probably more than they could stand because Nathaniel looked a little green for a few minutes, I did explain the why’s of waiting to eat until after you ride, but some lessons you have to learn for yourself. It was a beautiful day with the kids, they had so much fun and there was so much to see. Even Peyton went on some of the smaller rides and can tell all about how she went “high high high, but not up to the trees, that’s too high”. Nathaniel was fascinated with the "jumbo turkey legs" and Rachael would have bought one of every craft she laid eyes on if she could have. I had to snatch the kids away from more than one stall as the owners gave them the evil eye for touching all the breakables…..I had to explain the "you break it you bought it" motto.
This morning we had a clinic appointment scheduled for Peyton to get her spinal injection of Methotrexate, and she’d had all last week off because her counts were too low to start Interim Maintenance. I was fully expecting her counts to be up since that put her two weeks from receiving any chemo, but I was totally surprised to find out that her counts were still too low, and had not come up much since last week.
There’s also been the ongoing issue of Peyton complaining that her legs hurt. It’s usually around bedtime that she verbalizes the pain, so it’s always questionable because she’s pretty smart about manipulating the situation. But it’s been constant for about two weeks that she’s complained about her legs and that’s a concerning regularity to me. Just before Peyton was diagnosed she’d been sick with a virus and had been feverish for the better part of three weeks. The break through was when she woke up in the night screaming from pain. I wasn’t sure what was wrong with her, gave her Tylenol and put her back to bed. The second night she woke up in pain I called the doctor and then we got the bad news about her cancer. This weighs in my mind because of the pain, she only had a few days of pain before we were diagnosed and it was only at night that noticed it hurt. So, this parallel between the leg pain she’s having has had me a bit at odds about what to do.
I feel so lucky that I have the nursing and doctor staff I do, because I never hesitate to ask them anything, no matter how stupid it might seem. I take them every issue and whether they let me know it’s common or something worth keeping an eye on, I feel that they listen to me and I know they love Peyton and what’s better than having a great medical team? A great medical team that loves your kid! When I brought up Peyton’s leg issue, Dr. Kerr immediately came in and talked to me about what that might mean. It could be any number of things, a reaction to her Vincristine, growing pains, exercising her legs more than normal, or it could be a sign of a relapse. Dr. Kerr also explained that her counts not coming up for two weeks is not out of the ordinary, but we are going to hold an antibiotic that she takes every weekend that can suppress counts and see if her counts are up on next Wednesday. If her counts come up, she will start her normal chemo. However, if the counts are still low and she’s still having the leg pains, they will do a bone marrow instead to see what’s going on.
It’s hard not to get wrapped up in the bad possibilities. I’m working hard not to consider that this could all be signs that she’s relapsed, she’s going to have leukemia cells in her marrow and we’ll have to restart a much more intense treatment. I know that stressing about it isn’t helping anything and all it will do will drive me insane with the “what ifs”. Part of me has just been so comfortable with the fact that she’s flown through this easy and breezy, minimal hospital stays, no big problems, she’s been the healthiest sick kid ever! She’s felt good for the majority of her treatment, and has never lost her spirit and spunk. But I know that doesn’t mean that she’s safe from her cancer. It doesn’t mean that there isn’t the possibility of it coming back. I’m just leaving this in God’s hands, because whatever happens is going to happen for His reasons and no amount of freaking out on my part is going to change that.
Please pray that Peyton’s body will catch up with her spirit and her counts will come up. Also pray that no matter what happens next Wednesday, we’re able to find the strength to be Peyton’s parents throughout this, to be a strong family all around and to shine God’s power through each day.
We also got the news that our oncology group, The Pediatric Cancer Foundation and Moffitt are coming together to do research of pediatric cancers. This is a field that has really stopped making a lot of progress, most cancer research is done in fields of adult cancers and from what I’ve read, a major breakthrough in pediatric cancers hasn’t happened in the last couple of decades. So, these three groups are going to work towards making something happen and I think that’s fantastic! Kyleen, our child life specialist, asked us to come to the clinic on Friday so that Peyton can be involved in the shooting of a video that will be used for this effort. I’m not sure if it will be a commercial on TV, a video that they’re making or what exactly, but I’m excited that Peyton will be a part of this. That we can somehow help a little bit by raising the awareness of the need for more research, by helping to put a sweet little face of reality on the issue of pediatric cancer. Fewer children are dying of cancers now than 20 years ago, but it’s still too many, it’ll always be too many.
Peyton will also be painting a canvas that will go for sale at a silent auction that will benefit the All Children’s Hospital. When it’s completed and available for bidding I will let you all know, I’m sure someone’s empty wall space is just crying out for an original Peyton Mayhew. I warned them that her painting style is a little Jackson Pollack, a little Picasso, a little early Renaissance finger-paint, but they’re hip to that.
f.ro.G….fully relying on God
—-Anissa
