We are home!!
At radiation this morning, Nathaniel almost got a dose as well. When the techs had Peyton all settled and positioned, we would leave the room, they would signal for the door to close and then once it sealed they would start the radiation beam. Because Mr. Curious was in the house, they set the 500 pound (no exageration!!) door to close and he made a dash around it back into the room! One kid with radiation side effects is enough, I don't need two of them running around! They don't turn the "key" that enables the beam to be turned on until after the door is fully sealed, but STILL! I dragged him out of the room and things proceeded as planned…enough excitement for one day. He just wanted to see what was happening, he thought it was "soooo cool!". After it was all over, Peyton got her certificate of graduation to show that she had completed treatment, got a special present from the techs and then she got to take her mask. I wasn't sure how she would feel about that, but she surprised me by being really happy about having her mask to keep. She showed it off to people around the RMH and to Adelaine and Angela who came to visit us before we took off for home.
It didn't take too long for us to get things cleaned up and put into order so that we could leave this morning. We were all set and out the door by 10:30!! That drive home was so good, I was relieved it was over and glad to see that portion of treatment behind us. The RMH was an experience I'll never forget. The wonderful way they treat the families and the opportunity for families to be with or at least near their kids through their hospital stays is so outstanding. We got to meet several fantastic families, but one in particular really touched our hearts.
The Perez family is the one that we tried so hard to talk to but found the language barrier to difficult to manage. We finally had the opportunity to talk to them through a cousin of theirs who comes to help them communicate with the hospital and doctors. Danny, Sylka and Darelys Perez are here from Puerto Rico so that Darelys can receive a stem cell transplant. They have been here for weeks already and are looking at another six months at the RMH house while Darelys receives treatment and recovers. Darelys has T-cell leukemia and relapsed just months from the end of treatment in her brain, causing her to have stroke-like symptoms. She is 5 years old and, much like Peyton, usually has a smile on her face and a twinkle in her eye. She and her parents are here, separated from their other children, a 10 year old and a 7 month old left back in Puerto Rico with no idea of when they'll be together again. My heart hurts for the pain of their separation, the anxiety and worry they have for their daughter who has been given only a 30% chance of this procedure being successful and for the added frustration of being so isolated by the lack of communication they have with those around them that would be supportive but can't. Please keep the Perez family in you prayers, we are hoping that some of the support resources in our area will be able to reach out to them and provide some help for this family.
After we got home today life went on as usual. I walked in the door and it felt like all the energy and stamina that had kept me running efficiently over the past few weeks just drained out of me. My only thought was to curl up in my own bed for a few hours of napping time which Pete wonderfully provided me. Peyton soon crawled in bed with me and we napped for several hours and it was WONDERFUL! Once we got up we had a pretty full evening ahead of us. Nathaniel was invited out with his friend Ryan for some fun time, and I dropped Rachael off for play time with friend Jesse and Lily so that I could go to a special meeting with Peyton.
A group of moms and daughters are forming a club called Bloom….they have a very special purpose in coming together. These moms are developing this group as a way to teach their daughters about serving others, to teach them compassion and how to reach out to those in need and use the gifts and talents the Lord has provided to help others. They are planning to chose service projects once a month and get the girls involved in planning and taking action…how awesome is that!!! They chose to help us with the Peyton-Palooza yard sale as their first service project. They are going to be baking for the bake sale and have contributed to the raffle items, and tonight we got the girls involved with making signs that will be posted up at the yard sale and for advertisement. It was so much fun for Peyton and me to get down on the floor and make posters with these friends, they weren't perfect or professional, but they are made with love and enthusiasm and the heart it takes to make a fundraiser like this work. These signs are filled with more than just paint and color, but the promise of a future of caring and compassionate young women being raised to be involved and be active. These are flat-out the most beautiful signs I've ever seen.
Peter is off tonight with the dads from the Children's Cancer Center for a men's night out. One of the board members of the CCC opened up his house for a guy's night that included food, foozeball, and a poker night with a professional poker dealer and tables coming in for them. It sounds like a lot of fun and I know it was something that Pete really needed. After two weeks of being home with the older two kids full time, he needed a break as well. Trust me, I know how much work that is, and he's done a fantastic job of keeping the home fires burning….and not burning down the house.
I am still exhausted and looking forward to my first night in my own bed….however, Peyton and Rachael are hogging it completely right at this moment. I have no problems booting them out of it though because that's the kind of loving and caring mom I am.
We have a full weekend getting ready to ship Nathaniel and Rachael off to camp. We have some heavy duty scrambling to get ready for Father's Day on Sunday….I have to apologize now for my dad and for Pete's dad…I just didn't have the organization or time to get cards bought and mailed in time for them to have for Father's Day…and my dad's birthday coincides with Father's Day….so double demerit whammy for me! Love you, Dad! Am I still your favorite?
As far as Peyton's treatment goes, we head back to our Tampa clinic….YEAHHHH!!!….on Monday for chemo….that Yeah was for the Tampa clinic, not for the chemo….we missed OUR people a lot. We'll probably be there again later in the week for counts depending on what they do during this weekend. She has these next two weeks and then she officially goes into maintenance…this is considered the Holy Grail of leukemia treatment….it may take it some time to even out but things are supposed to get easier through this part…it had better, we have 2 years of it!
The basics of maintenance are that we will do 12 week cycles of chemo…two week clinic visits for chemo….oral chemo at home…oral antibiotics at home…steroids for 5 days once every 12 weeks….clinic visits depending on how stable her counts are….and hospital stays only if she gets fevers. Her counts will still vary because although it's less chemo, it's still chemo and her body will react negatively. It had still been a thought that preschool wasn't completely out of the question for her, but until I know what she's going to with maintenance I'm not even going to think about it. Maybe after a solid 6 months of positive progress then we'll consider it around Christmas time (IF she's decided to fully potty train), but it's all up in the air and subject to change.
I am just so glad that this radiation and Delayed Intensification 2 is over…almost….that I don't care if she doesn't go to school until kindergarten. As they told us, we'll be watching for a build up of side effects over the next 2-4 weeks….she looks great and is so happy to be home. To everyone who saw her tonight, it was hard to believe that she was getting radiation to her brain just hours prior. She was laughing and playing and enjoying being with friends again. I just want her to be happy, to have as much happiness in her life as she can cram….she goes through so much and still manages to give us so much joy. I am constantly blessed to be her mom and I am glad that I am here to walk this path with her. She has provided me with such a growing experience and shown me how to be joyful and at peace with all that Lord gives us to handle….she is a wonderful teacher and I feel like I've become a better person for all that we've gone through.
f.r.o.G…fully relying on God
–Anissa
on Jun 15th, 2007 at 10:49 pm
You go girl! Almost at maintenance – it is the little things in life….. I tell ya – we are finished with chemo and it feels good. Although with Nik at camp – I feel like I am missing my right arm. Payten – Nik has her mask and she says she is saving it for when she has the strength to beat it with a bat to little pieces…. so if you want to swing together – just holler… Penny
[url=http://www.caringbridge.org/visit/nikkihawkins]www.caringbridge.org/visit/nikkihawkins[/url]
on Jun 15th, 2007 at 10:56 pm
Peyton, I am so happy to hear you are home and get to sleep in your own(Mommy's)bed.Love, Karalyn
on Jun 15th, 2007 at 11:38 pm
For the record, let it be known that those mom's that helped out with dinners saved my kids from 2 weeks of PB&J's, hot dogs, and soup. I also finally got to use one of my Cracker Barrel Gold cards. Woo-hoo! I did feel horrible about the cashier that helped us though. Just in making conversation, she asked how we got the Gold card because she wished she could have one. I'm used to everyone at Cracker Barrel knowing Peyton. So I said something along the lines of, "my daugher is Peyton. She has leukemia. Your store kind of adopted us. There was this big write up in your newsletter about us." When I said the word "leukemia", the poor cashier's face went from normal cheerfulness to shear horror. I felt so bad about that, I didn't know what to say. I tend to forget that not everyone is immersed in cancer. I'm sure I just set her day down the tubes. Many apologies if you are reading!
When people ask me how Peyton is doing, I usually tell them that WE're getting through. That "WE" includes each and every one of you that helps out in some way. It might be a meal. It might be a post on the web site to let us know you're thinking about us. It might be as simple as a smile at the right time. The bottom line is that it helps us out when we need it most. Team Peyton has a lot of members these days and each and every one of you are helping us through this.