Treatment and News

Over the weekend we’d noticed a definite change in Peyton. Her mood was lousy, she was really tired and irritable, and she looked pale and had big circles under her eyes. This morning when I took her for treatment her blood counts were actually up, but the doctor explained that this was just effects of the treatment itself. It’s showing the wear and tear on her little body. That was hard to hear because I was thinking that her red blood counts were down and a transfusion would pep her back up, but this is nothing we can do anything about. It’s hard to be helpless and have no control over any of her illness, but we pray and we keep her spirits up the best we can.

This is Kathy, Peyton's social worker at the All Children's Hospital clinic

Her treatment today went well, it was a long day, we didn’t get home until 5:30, but she napped at the clinic and had fun there with the nurses and child life specialist. The Children’s Cancer Center and Junior League sent her the nicest package, a Disney Princess backpack with all sorts of Dora goodies, stickers and toys and fun stuff to play with, so it was great for her to have this big present to enjoy on this long day.

This is Ms. Teri, one of our fantastic nurses!

I had talked to the nurses at the clinic about her treatment and how I was upset by the fact that she has a port and yet she still has to undergo shots in her legs 4 days a week when she could be getting this medication by IV through her port. My feeling was that the port access should be done on the first day as it always is and then left in for the rest of the week instead of being taken out at the end of the day. That way, she just has the one poke and isn’t forced to endure the painful shots. That was one of the reasons for the port in the first place. We talked about the increased risk of infection if her blood counts are down; the port is a very vulnerable spot and the first to be attacked by germs and bacteria. But we did get them to agree to give it a shot with Peyton, they left her accessed today and hopefully it will go well so we can continue this less painful method of treatment.

This is Ms. Louise, another of our wonderful nurse angels.

Peyton has 4 more weeks of this chemo cycle, then two more cycles – each 6 weeks approximately – and that’s not counting any time when her counts are too low for her to undergo treatment or any time she might fall ill. So, roughly 14 more weeks of chemo to go and then she’ll have her radiation treatment. But the great news was that if she stays in remission, she’ll go into maintenance treatment after her radiation. It’s actually sooner than we had first thought. Maintenance will be 12 week cycles, and she’ll have oral medications throughout the two years of maintenance, but her clinic visits will be bi-weekly and then monthly. They said that during this period life begins to return to normal, that Peyton will be able to resume full activity and will begin feeling much better. Her hair will grow back during this period and a lot of the side effects we see will start to go away. So this was wonderful to hear, it was that bright light at the end of what has seemed to be a very scary dark tunnel.

I know my greatest fear right now for Peyton is a relapse, which would mean that her leukemia came back and we would have to start from square 1. It would also mean that we would have to undergo a much more intense chemo treatment and possibly look at bone marrow options. I pray for this not to happen, I hate the thought of having to go through this all again. We just keep positive that her spinal results will show no leukemia and we’ll be able to move on and into a happier phase of our lives.

Nathaniel is doing great, his mid-term reports showed straight A’s (except for penmanship, which let’s face it, not THAT big a deal) so we were super proud of all his hard work and thankful for the wonderful teacher he has, Mrs. Hensley. Rachael is just blooming at school, she thinks it’s an awful lot of work and she has decided that going back to pre-k might not be all bad, but she’s reading all kinds of books, she’s writing me little stories at home and is just doing fantastic with her classmates. We are so thankful for the two teachers we were blessed with this year. Mrs. Hensley and Mrs. Wade are both loving and supportive teachers and it’s nice to know that with all the upheaval the kids have been through the last year, they go to these two women who are a constant and encouraging hand in their lives.

Peter and I are doing ok. We’re tired, we’re overwhelmed at times, but we hold it together the best we can. We’ve been offered babysitting for nights out, dinners and tickets to Busch Gardens and we’ve haven’t been able to come up with a time when we can go yet. We’re hoping to take advantage of these offers soon, people want so much to help, and we SO much want to go. We really are looking forward to an opportunity to have some time together, it’s been hard on us, and we’ve rarely had a moment alone to talk about anything but the kids. But we love each other, and that’s a special comfort all it’s own, it’s the base of everything we do.

The fundraiser is still underway, we have been continually blessed by the wonderful responses and generosity. It’s just amazing and we’re so thankful.

With love from all of us
—Anissa