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.

June 17th - Chemotherapy #32

It was Peyton's last treatment for 2 weeks! Peyton actually felt up to going to a Rockies game on Friday night. Landon and I stayed back but Charlie and Peyton had a wonderful time. Landon has a hard time sitting still for that long. Understandably so, he's only 2 (almost!!) Anyway, a couple of weekends at home sounds so exciting! The next set of treatments will include an MRI and an eye exam so it'll be a busy month ahead. We are all enjoying our summer though! We have been having picnics outside, play time at the park, and going to gymnastics. Peyton will do swimming lessons in July and hopefully we'll take a much needed vacation toward the end of July. Life is good and I'm blessed to be a "stay at home mom" for a few months. I love it!

June 10th - Chemotherapy Treatment #31

Well Peyton is doing great with all his different nurses lately. I don't think we've had the same nurse 2 weeks in row since Amy left. We still miss her though! He did have to tell Miss Aubrey last week when she asked him if he wanted a band aid that "he's not impressed with band aids!!" We all got a good laugh out of that one! I'm pretty sure that ALL the nurses now know that Peyton doesn't like band aids....even if there's blood.....no band aids! He's been doing great! I guess you can adjust when you have to. He just goes with the flow. I hope it continues to go this smoothly! He was really tired this week and slept all through treatment. That makes the time go by quickly! When he woke up Aunt Jodi had stopped by the hospital to say hello. That always makes for a nice surprise. He was happy to see her! We then went to pick up Landon at Leroy and Darlene's and as usual had a wonderful dinner with them. One more week to go and then a little break! Whew hoooo!!

June 3rd - Chemotherapy Treatment #30

This was a super fast weekend. We drove to Denver on Friday morning. Then immediately after Peyton's treatment we drove back to Colorado Springs, spent the night and got up early the next morning and headed home. Charlie had some things to do with work and so it made for a fast trip. We missed our weekly dinner with Leroy and Darlene! :( The kids enjoyed a bit of swimming at the hotel though, and Peyton was really excited about that!! Awwww......life's simple pleasures (well for a 5 year old I guess!)...

May 27th - Chemotherapy Treatment #29

Besides Peyton being a little sick during treatment and after, on Friday, this was a great weekend! We got to spend some time with Aunt Jodi and Aunt Dana! Always a wonderful time...we love the fact that Dana, Nick and Tyler are moving back to Colorado in June. Peyton was feeling better by Saturday afternoon so we all headed out to watch the Rockies game. What a beautiful evening! And to top it all off.....it's summer break!

May 6th - Chemotherapy Treatment #28

Yay! Peyton just finished another 4 weeks of treatment and we get to spend 2 weeks at home without having to travel to Denver. I cannot put into words how much we absolutely love our weekends at home!!! It comes at a perfect time too, as I'm trying to wrap up the school year and Charlie is preparing for his fiscal year end at work. Whew......
All went great on Friday. I believe Peyton and his new nurse "Crazy Carol" (as she wants to be called) have officially bonded. It's been hard without Amy there each week but he's adjusting. He did run over and give Carol a hug after treatment on Friday and that was a first. He hadn't yet warmed up to her enough to do that. I think he's going to be fine with her after all.......
He's been lucky enough to get to spend some quality time with Ms. Pat (the creative arts therapist) at the hospital the last 2 weeks. He doesn't like to miss out on time with her. She's so wonderful, and he really enjoys visiting and playing with her.
Unfortunately Landon took a big fall on Friday and cut his lip. Our friends that watch him felt so badly about it. By the time we got over to their house his lip was really swollen and his nose had been bleeding but he was ok. He took a tumble out of their sliding glass door. I think he was used to the screen being closed and just tumbled right through. Those who know our little Landon know this is very typical for him. He's had bumps and bruises pretty much everywhere since the day he started walking! He's 150% boy! We don't get too worked up about it, but I do admit I worry about him because he doesn't seem to have too many fears. He thinks he's every bit as big as Peyton, and he's not yet 2!
We were excited to be home for Mother's Day and enjoyed spending the day with our family. It was a wonderful day!

April 29th - Chemotherapy Treatment #27

Friday was another long day for Peyton. We started the day with an eye appointment, and then he had chemo after that. These are typically guaranteed to be 7 hour+ days. But we did it and the eye appointment went really well. Peyton is a lot more cooperative now than he was a year ago. I think he's just familiar with the process, so he know what to expect.
Treatment went well this week. Doctors did another blood culture just to make sure he didn't have any kind of infections going on, and after our scare last week, I was happy about that. All the tests came up negative for infection so that was great! One more week and then he'll have 2 weeks off!