September 14th, 2012 - Chemotherapy Treatment # 63

This week our trip to Denver was very fast. Landon has started soccer and his games are early Saturday mornings. We don't want him to miss a game so we drove up to Denver very early Friday morning, Peyton had treatment, and then we drove back home that night. We were exhausted! Peyton slept most of the way home so that was good for him. If he hadn't felt so great there's no way we could have done that! It was late by the time we got home so everyone went right to bed. I don't like days like that, but at least we made it to soccer! Whew......sometimes I honestly feel like I live my life in fast forward! I'm not complaining....I love my crazy busy life!! It's just how I feel sometimes.

August 17th and 31st, 2012 -Chemotherapy Treatments 61 & 62

Peyton's treatments are fairly easy and uneventful lately. This is a wonderful new transition for us considering how rough the previous months have been for him. He breezes right through each treatment. Peyton and I have started school and he's loving kindergarten! He's so excited to be going to school all day instead of just 1/2 day like he did in preschool. I'm trying to get back into the work mode. After such a wonderful summer this is hard! It seems I have a great class though, so it makes it a bit easier. Landon is with a new sitter this year. She is a very nice lady and I think he's liking the chance to play with some kids his own age. (She watches 2 little girls that are both close to 3 years old.) Peyton did see an Ear, Nose and Throat doctor. Turns out kids with NF often have a "shorter palate". Not sure what all that means just yet. I definitely want to do more research on this. To correct his speech issues Peyton will need a surgery. Again this is something that is on the table but we aren't feeling the need to rush into anything. We want to explore all our options and discuss this with more than one doctor. We have visited with his teachers and they can understand him on a very regular basis so I feel comfortable with that. I also want to consider doing this in the summer rather than having to miss school. He's doing so well I don't want to interrupt the progress he's making. We'll see. I'll keep everyone updated on any decisions we make.

August 3rd, 2012 - Chemotherapy Treatment # 60

Another week done for Peyton and it was easy! We are still excited that Peyton is doing so well since getting him off of one type of chemo. He continues to feel great and is looking forward to beginning kindergarten this year. How is it even possible that my sweet boy is starting school? I'm thrilled that he's ready but I know he's growing up and I'm just not sure I'm as ready for it all! lol On a different note....we have started talking to Peyton's doctors about our concerns with his speech. There are times when it is very difficult to understand what he's saying. His speech is often slurred and just unclear. We aren't sure what we should do. It's been a problem for ahwile but we are now noticing that it's becoming more prominent. Should we try and get him in to see a speech therapist? Is this something a speech therapist can assist us with? Later this month Peyton will see an Ear, Nose and Throat doctor to help us with these questions. Summer is wrapping up and we are going to try and just enjoy the last few days of break!

July 20th - Chemotherapy Treatment # 59

Today Peyton had a dentist appointment to fill the last of his cavities. He did so much better this time around. He saw a different dentist and she was really good! He didn't cry and we were in and out in about an hour. We then went up for chemotherapy. We once again shared with the oncologist how sick treatment has been making Peyton. She began making phone calls and came back with some wonderful news! Peyton can be taken off the chemo drug that's been making him so sick!! With just one chemo drug now, she said we should (hopefully) continue to expect the same results. We hope to see the tumors shrinking. This treatment ended up being a breeze for Peyton! By taking out that one treatment, he's no longer sick. What a relief......he felt so good that he didn't even need a medicine for nausea. We made it home without any adventures this week!

July 6th, 2012 - Chemotherapy Treatment #58

Peyton had a dentist appointment to begin the day. We recently found out he had 6 cavities. We were shocked because 9 months prior he had no cavaties at all. Initially the dentist had told us that Peyton's teeth and gums looked great. He said, "Keep doing whatever you're doing." Later he came back with the x-rays and told us there were cavities; so we were so surprised! After talking to the dentist and oncologist it was concluded this is a side effect of the continued chemotherapy treatments. The treatments can change the acid in the mouth therefore making it more likely to get cavities. They fixed three teeth on Friday and will fix the others on July 20th. Peyton did ok....he didn't like it of course but he was really good and stayed fairly still. He cried a bit; not because it was hurting but because he was scared. (That's what he told the doctor anyway.) I was having a hard time when he started crying because I just wanted to go over and hold him!! It's hard on moms to see their babies crying! :( Maybe the next appointment will be easier because he knows what to expect. We took him to his chemo treatment next. He was really sick about an hour into it. Come to find out he was given zofran instead of the new medicine we tried last week. (Zofran won't even touch his nausea now. It's getting worse with each treatment.) By the time he was given the new medicine he was already so sick it took awhile to kick in. He was sick the rest of the night. We did lower the dosage (due to the fiasco last time). I'm not sure less is going to work though. He was really sick. He woke up sick on Saturday morning so we waited to see if he felt better before heading home. By about noon he was feeling better and we thought it would be safe to head back home. BAD IDEA!! About an hour into our drive he started throwing up. It was like that all the way home. We just kept up with the medicine and would pull over when he felt like he needed to get out. Then we stopped at a gas station and purchased a GIANT coffee/soda plastic mug. I can't believe they sell such large containers, but I was glad we found it. He used that as his bucket and it saved him from having to have throw up everywhere when we couldn't stop really fast. When he threw up in it we would stop, rinse it out and back on the road we went. My poor sweetheart had a rough day. Charlie and I both said we should've just waited until Sunday to head home, but we didn't know.....Sunday he woke up and said, "Wow! Mom, I finally feel like myself again!" I was so happy! However it didn't last; he woke up on Monday morning really sick again and he missed day 1 of swimming lessons. :( He was really bummed out about that. It was definitely a rough round of treatment this week.

June 15th, 2012 - Chemotherapy Treatment #57

Today was a long day at the hospital. Peyton had 2 different vision exams and an MRI. One was while he was awake and one was done before the MRI. We walked in the hospital at 8:15 and didn't leave until almost 5:00 pm. Landon, thankfully, was with Leroy and Darlene. We had to wait unitl Monday for Peyton to get treatment because there was no time on Friday for a 3-4 hour treatment on top of the already packed schedule. The doctor came in to see us as Peyton was beginning treatment. She had great news for us.....one of Peyton's tumors (around his brain) had shrunk significantly! WOW! First good news we've had in almost 2 years! The other tumors look the same, but we are now hopeful this new treatment might be the combination that will finally work for Peyton. What a beautiful perfect day! I finally felt like I could breathe; like a load was lifted off my shoulders!!!! I can't explain how we felt. Peyton responded a little differently. He said, "Does this mean I will finally be able to see?" That pulled at my heartstrings a bit, but we explained that unfortunately no he won't be able to see better, but that chemotherapy is working and he can finish up with it someday and hopefully his vision won't get any worse. Very tough to explain to a 6 year old. It was a bittersweet moment for us. He was ok with our answer and even told a few people the good news about one of his tumors shrinking so he internalized it to some degree. Good news in Peyton's mind (I think) would be no more chemo and being able to see like everyone else. I don't blame him.....that's my prayer too. But I realize he will never have more vision than he does right now.....but I will continue to pray it doesn't get worse. We also talked to the doctor about Peyton's nausea medicine not being effective anymore. She prescribed another medicine for him to take in addition to the two he already takes. She said this medicine will work for his nausea and he shouldn't throw up anymore. However, she did say it would make him "loopy" and tired. So.....good news was Peyton didn't throw up....bad news was he was more than loopy he was essentially drunk!! And he was NOT tired. He didn't go to bed until after 10 pm! I'm fairly certain the recommended dose was a bit too much. He couldn't hold his head up or even walk. He was saying really bizarre things and doing things I couldn't believe. None of which I want to even share.....I just know that it was too much medicine for him. We are going to talk with the doctor before the next treatment and see if we can find a more accurate dose for him. It was just as hard watching him act like this as it was watching him throwing up all night. Surely we can find a better balance.

June 1st, 2012 - Chemotherapy Treatment #56

I can't believe it's June! Peyton's treatment started to make him sick before we left the hospital. It's almost like each treatment is getting rougher for him. The nausea medicine isn't doing much to relieve his discomforts. We were all going to meet our friends for dinner later in the evening but Peyton was so sick he couldn't move from the couch. He threw up so much. I felt like it would never end! He was so thirsty. I tried to give him Gatorade but he couldn't keep anything down. It was really hard to watch him going through this. I just held him and squeezed in some special snuggle time. Landon and Charlie met up with our friends and had dinner while we stayed home and watched cartoons. Once again, thankfully, by the next morning he was feeling much better and we were able to head home. Next week will be the MRI...........I'm also going to talk to the doctor about a different medicine to treat this nausea. Ugh....