This was written on June 1st.
Jaylie is amazing. She did awesome again at her radiation appointment today. Dr. Brown, our radiation oncologist, painted her mask like tweety bird. She was so excited! It wasn't done for the appointment yesterday, so I figured it wouldn't be done until next week. So we were all surprised. She got right up on the table today and layed down and was so still, she was amazing. All the nurses and technicians were amazed at her too. Two of them have 5 year olds and they were skeptical of Jaylie being able to do it. They said there was no way their kids would be able to do it. She was perfectly still, so awesome! The radiation machines are not loud so she can listen to music or we can read her a book over the intercom. No one can be in the room when the radiation is going though, but they have tv screens where we can see her and intercoms where we can hear and she can hear us if we want her too. She wanted the tangled book on cd the first day and then today she wanted a cd of princess music. Today went much faster than yesterday. They have to line her all up just right so the radiation only goes where they want it to. She has a few butterfly stickers on her chest and tummy with marks on them to help the techs line her up just right. Yesterday just took longer because it was the first time doing it. Today was pretty fast. She was maybe on the table for 15 minutes today. She even said on the way home today that she was excited to go tomorrow because she likes to lay there really still and take a little rest. I was shocked! She is so awesome! I think I would even have a hard time with it, because they put the mask on you and they lock it to the table and your chin is tilted back really far. She did say that was a little uncomfortable and was asking why her chin had to be up so far. We told her it was because they have to get her head in the right place for the treatment and she was fine with it. Kip and I are just amazed at her attitude and how good she has been so far. I think I will worry everyday how she will do, but hopefully she will keep this up. She was not sick at all today but did have a stomach ache and threw up yesterday and had a head ache. If she keeps getting sick she will have to go on steroids. We are hoping to avoid those.
After radiation, we headed down to Dell Childrens for her chemo. She will get it once a week during radiation. Kip was able to be there for the appointments and Jaylie loved that. I had to drop them off because Crew had an appointment to get his doc band (helmet) adjusted. He gets it off in 2 weeks, I will be glad. Before all this happened with Jaylie, I thought him getting the helmet was a huge deal and I was kind of dad about it. Now it seems so trivial, it's no big deal. We have a whole new perspective on life now. It's pretty crazy how we are changed so much already. Anyways, Jaylie did pretty good overall. She had a bandaid covering her port and it had to come off and she freaked out. Her worst moments are when we have to tske sticky stuff off her skin. She hates it! Then they had to access her port. She was scared and freaked out. It was her first time so I don't blame her. After they got it in she calmed down and said it didn't even hurt when they poked it. They took her blood, they have to check it every week. Her levels were great because she hadn't had any chemo yet. They said the levels would stay pretty good through the radiation, so her immune system won't be too compromised. This was a nice surprise for us, they still monitor it closely though. She got her chemo medicine which is only about a one minute push. Some chemo meds are given over hours, but this one during radiation is short. The drug is called vincristine. She did great with it. She freaked out again when they took the needle out of her port. We had to reason with her for s while and then kind of hold her down. It was sad. She was so scared it was going to hurt. Once again after it was out she said it didn't even hurt. All throughout the appointment except for the moments she freaked out, she was happy and talkative with the nurse and nurse practitioner (the doctor was out of town). She really had a good attitude about it all. When it was time to leave she gave them high fives and hugs and then said "thank you for letting me come to the doctors today!" We were surprised and so were the nurses. It was so sweet! The nurses were in awe and I started crying. I am soo thankful that she is doing do well. Kids are resilient I am learning, I didn't think mine would be but she is. We are so thankful for all the prayers, we know they are working because of how she is doing and how Kip and I are handling things. It is still so hard but we feel comfort and peace a lot of the time. It kills me knowing these treatments are hurting her. She will probably have more side effects next week and then the third week and on is when she will have most effects and will lose her hair. I think that is when it will be hardest for me. I'm just trying to stay strong and have faith, it's the only thing that helps.
Thank you so much for your prayers and service. We are blown away every single day at all the service and love we are given, it is unbelievable. We will forever be grateful to everybody who has served us in some way. Thank you! Please keep praying for little Jaylie. That the radiation and chemo will kill all the cancer forever and that she won't have too many effects from it. Thank you, we really do feel the prayers.