October 7th - Chemotherapy Treatment #37

Peyton missed treatment on September 30th due to Charlie and I being in Washington D.C. It was a great experience for us, and gave us a chance to spend some time together just the two of us. We had a great time! As most of you know we had the opportunity to meet Vice President Biden! What an opportunity! We have some fun, new memories.
Treatment this week went very smooth. Peyton didn't have any problems and didn't complain about being sick at all. We love weeks like this! Of course we give him his medicine each day.....I think the new stuff is really working great! Yay! Let's hope the next 3 weeks go just as smoothly.

September 9th - NO CHEMOTHERAPY

Well thank goodness we had labs drawn here in Alamosa this week!!! Peyton's counts were too low for treatment and his doctor called from Denver and said don't drive up here.
I think this will be a great idea and might save us a few unnecessary trips. Peyton gets scared when they draw his blood but he did it! Thanks to Karen for taking him! It's not easy keeping him calm around needles! I do think that some candy was involved....maybe even a sucker or two? :)
This day was bittersweet.....we started treatment in August 2010 and this was the projected "end date" for treatment, but here we are. We will get through this. We were "knocked down" but we've dusted ourselves off and we are headed down this path again. As I've said before we are learning to roll with the punches; it's hard some days but Peyton needs us to be strong. :)
Next week is Jodi's wedding (Charlie's sister). Peyton is in the wedding. He is so excited to get to wear a tuxedo. He's such a charmer and loves getting dressed up! It's also a week off from treatment!

September 2nd - Chemotherapy Treatment #36

This is the 3rd treatment with the new chemo drug. Once again we told the doctors he'd been really sick. Thankfully they've given us an additional medication to help with the nausea. He can take this along with the Zofran he already takes. We're hoping this will help. His color has been pale and he's had dark circles under his eyes, but he seems to have less issues with the nausea.
After talking with doctors about some of the side effects of this new chemotherapy we found out that some weeks Peyton's labs (blood work) might show he isn't strong enough for treatment that week. I asked what that meant. Would we drive all the way to Denver only to be told to go home? To which the doctors replied, "Yes." For that reason we have decided to have local lab work done here in Alamosa each week to determine whether or not to make the trip to Denver on Fridays. The lab here will fax the results to Children's Hospital, and then his doctors will let us know if his counts aren't strong enough for treatment. I would much rather do this than drive all the way to Denver for nothing!! We'll start this next week. Peyton and Landon's sitter, Karen, will do this for us! I can't thank her enough for taking this on. She's awesome and we are lucky to have her!!! I often feel like she picks up where I leave off as mother when I go to work. We are blessed!

August 26th - Chemotherapy #35

New treatment week #2 for Peyton. He definitely complained more this week of stomach issues than he did last week. We gave him Zofran to help with the nauseated feeling, but even that didn't often make it go away. Overall he just didn't feel like himself. He still wants to go on about his day as normal he just feels crummy. School has started and that's exciting for him. He doesn't want to miss a day. Not sure how this new treatment will go.....

August 19th - Chemotherapy Treatment #34

Today was Peyton's first treatment with the new chemotherapy. Things went off without a hitch. We discussed all the new side effects that go along with this drug. Hopefully he will continue to only be mildly affected. He did experience nausea for the first few days but as I've always said the medicine he takes for that is great. It sure helps him get through his days.

Peyton is excited for school! We have made the decision to keep him in preschool for another year and wait on kindergarten until next year. He's often really tired from just 1/2 day of preschool so I can't imagine how hard a full day of school would be for him. I think it's best not to rush things.

I'll be returning to work soon too. I have mixed emotions about that. Of course it's always hard to leave my boys after spending all summer with them. On the other hand, I love my job! It's a great job to have as a working mother and I always get so attached to the kids in my classroom. Ahhhhh......it will all work out. It's just things get so crazy when we start back to school

July 15th - No Chemotherapy

Peyton had an eye appointment but no chemotherapy today. His doctors decided to wait until we returned from vacation in August to start his new therapy. We were excited to hear the news that Peyton will not have another treatment until August 19th! We were so excited to not have to make the weekly trips to Denver, that we drove back to Alamosa right after his eye appointment!

All went great with that checkup! No new changes to report . Thank goodness!

July 8th - Chemotherapy #33

Friday was definitely a hard day for us. Peyton's MRI was scheduled for 6:30 am. We were prepared for a long day because he would have chemo after that. So far the MRIs have all turned out the same. Little change has been seen in the size of the tumors, but we have been happy there has been no growth either. With only a few treatments left until our projected end date, we thought this MRI would be the same as the previous ones. When Peyton's oncologist came into our room before chemo started she told us she had good news and bad news. Never a good thing for a doctor to say. She told us the good news was the tumor on Peyton's optic nerve hadn't changed since the last MRI in April. The bad news was one of the other tumors around his brain area had doubled in size since then. I was so shocked to hear this news. I think we knew immediately this was going to entail more treatments. Sure enough doctors will start Peyton on a new chemotherapy drug and treatments will be extended for another year. We now are scheduled out until September of next year. I will admit this news hit me really hard. I have been looking forward to finishing up in September for quite a few months! Peyton was excited to have his mediport taken out, and we were all looking forward to fewer trips to Denver. We know Peyton will always have NF and he will always need regular doctor appointments, but we were looking forward to not traveling every week!
Unfortunately there are no guarantees this new chemotherapy will work. The doctor told us there's of course the chance it won't work, and then we'd have to think about surgery. That really scares us, so of course we will do whatever we can and explore all options before something like that.
Peyton was really concerned about why I was crying when the doctor gave us this news. He kept asking me what was wrong and telling me it's ok......I try really hard to keep my emotions in check around him but that day was very hard for me. When I explained later that he will have to continue doing treatment and keep his mediport in, he said "It'll be ok mom. I'll be alright." Powerful words from a 5 year old that complains very little about his situation. Again I will say, he gives me strength!
We have made every trip to Denver as a family. Peyton has had us there with him, each and every treatment day so far, and I know we will be right there with him (together, all us) for the next year. He is my sweet baby boy.....
On July 15th he will have an eye exam and chemo afterwards. Another long day, but hey....we are getting to be pros at this.