At the end of what was a really knock-out day, I read something that bummed me out a little bit. I got a packet in the mail from the Leukemia and Lymphoma Society about short and long term effects of cancer treatment. We’re talking about down the road, when Peyton’s school age we can be dealing with memory and cognitive problems, issues with testing and attention span, even the possibility of post-traumatic stress syndrome. As I reading this, it gave 6 factors that raise the likelihood of long-term problems….I was dismayed to read that Peyton falls into 5 of the categories: diagnosis and treatment at an early age, cancer that effects the brain or central nervous system (she had leukemia in her spinal fluid at diagnosis), a diagnosis of ALL leukemia, she’s going to be having radiation on both her spine and brain, and she’s a girl. I like to think that once we get her body free of the cancer and the chemo, she’s going to have smooth sailing. I just pray that whatever the long term effects she may have, we will find the right ways and the right people to help us cope with them.
Ok…that said and done….we had an amazing day.
First, Nathaniel went to the Math Olympics to represent our school with 5 of his classmates. Unfortunately, he was one of two kids from our school’s 3rd graders who didn’t place and he was devastated. Many tears were shed in disappointment, but we made sure he understood that trophy or not, we are so proud of his achievement in getting picked to go. He’s a bright kid, I’m proud to say that Pete’s mathematical genes kicked all my slacker math genes to the curb and produced one smart little cookie. He’ll have many more opportunities to show off his genius in his future.
Peyton and I went to the Zach Tucker Golf Scramble today that benefits the Giving Hope Through Faith organization. I had the chance to meet many of the moms that, up until this point, I felt like I knew intimately but wouldn’t have recognized in person if they’d smacked me in the face with a 2×4. The pediatric cancer families usually have websites that allow us to keep track of each other, get updates on treatment and just see how day to day life is holding up. So, through email and guestbook posts we encourage each other and get to know each other.
The people at the Scramble were all so loving to Peyton and me, Sherry Tucker had a little bag of goodies for Peyton the minute we arrived and they were just charmed by my little “fuzzhead” (as she likes to call herself). She played and oohed and aahed over the golf carts, she basked in the attention. When it was time for the start of the event, Sherry and her husband Dirk said a few words of thanks to all the sponsors of the event, to special people who’d done so much to make the event possible, and then introduced Peyton to what seemed like an army of golfers, giving a face to the reason they’re all there.
Peyton with Sherry Tucker, founder of Giving Hope Through Faith, mother of the late Zach Tucker .
Peyton with Heather Duckworth, mother of the late Jacob Duckworth.
I found out that this blog got quoted in the Brandon News! I was sort of excited. You can read the whole article here. I am glad that the honesty of that day’s blog was used to help promote this group that I know is going to grow and help so many families of pediatric cancer.
After that, Peyton and I went home and took a nap….truly the highlight of some days for me.
Then we were up and off again!
With Peter and Nathaniel still on their return from Ft. Meyers, the girls and I took off the Temple Terrace Relay for Life. Our friend Nikki Hawkins gave a sweet speech as the honorary chairperson of the event, her chorus group sang some beautiful songs and we were again touched by the solidarity of support and love for the survivors, those still in treatment and those we’ve lost.
They had all the survivors take a quick moment to give their diagnosis and how long they’ve been a survivor. I got to stand next to a woman who was well into her 80’s and she’s a 25 year survivor. The organizers thought it was awesome that they got a picture of the Relay’s oldest and youngest survivor together. Again we walked our special lap, the encouraging applause reminding us that we are never alone in this fight against cancer and the search for a cure. We left shortly after because we had to head back to Brandon, to a Relay just a mile or two from our house!
This picture in particular just makes my heart ache. Her back isn't even wide enough to fit the word "Survivor", but her spirit is strong enough to make her one.
I feel a little like we’re marathoning the Relay experience. But each one has its special moment, each one has its unique feel of community and excitement. The one in Brandon was really awesome, not because it was the biggest or the best one we’d been to so far, but it was special because it was in our town, the people we live next to every day coming together for this purpose. We saw tons of friends, we got to meet a bunch of new ones, I had several people come up to meet Peyton and share that they we are in their prayers. I can’t imagine what I would have been missing to never have gotten involved with Relay and I know that it will be a part of our family forever.
It was windy, it got cold (that’s fantastic for Florida in April!) and we came home to crash because tomorrow is another day of RUN RUN RUN!!!
There has been no new updates on Taylor Arrington, and in this situation, we have to pray that no news is good news. She and her family remain in our prayers and the prayers of many in our community.
GOOD NEWS! Basi Perkins (mom to Kate) sent me a email to let me know that her mother’s breast biopsy was fine at this point. We have a mighty God! I know they are so happy and relieved and we are so thankful for this great news.
After Thursday’s night adventure in stair-diving, Peyton had a terrible night. She’d fallen asleep in her carseat on the way home from the [url=www.childrenscancercenter.org]Children’s Cancer Center[/url] and I just tucked her into bed without medicating her. She woke up screaming and writhing in pain and it was just horrible. Peter and I had to work so hard to get her to tell us whether it was a bad dream, to get her to tell us where the pain was. I just wanted to give her the pain meds and let her rest, but I feel like I also need to know exactly what’s going on so I can share a detailed report to the doctor. So, my baby’s in pain and I’m making her wait until she can tell me if it’s pain in her legs, back or what. She finally calmed down and slept until after 10AM….absolutely unheard of….and if I can get her to repeat that on a morning when I don’t have to wake up early, it would be a beautiful thing.
I truly hate to think that this constant and agonizing pain is just a part of our lives until she finishes treatment, but I know that it is for some kids. Just keep this issue in prayer.
I am thankful for this day. With the bad news, the good news, the time spent with friends and the time spent making new ones….it was a blessed day. I got to spend time sharing Peyton with many parents who have lost a child to cancer, and for them to see her smiling face and hear her funny little voice, I saw the joy in their eyes. I got to take my girls out for a few hours, just the three of us, that’s always precious. I thank God for each and every moment that I am given. They are a gift.
f.r.o.G….fully relying on God
—–Anissa
Ps….I wanted to share a phrase that seems burned into my brain. It pretty much sums up the life of a cancer family. It was given to the Tucker family on a plaque when Zach died and it touches my heart.
"God’s purpose is always greater than your pain"
