Hope4Peyton

There was an believably heart-wrenching moment when I sat down to write this post that I considered that Mary Kay, Taylor’s mother, won’t be doing this anymore. There will be no more updates on Taylor’s progress, no more sweet stories of things she said or did, no more uplifting stories of her continued strength in fighting cancer. She made the final post of Taylor’s life on Sunday. She may make more posts about their family, how life goes on for them. But Taylor’s posts have ended. I was just frozen at the thought that there is a very real possibility that I could be sitting at this keyboard forced to make that same sort of post about Peyton. How I ache for this family, for their loss, for their struggle to move past this. I think about the added sorrow that when Mary Kay and Cary look at their beautiful daughter Jordan, Taylor’s twin, they are going to see the mirror image of the daughter that they lost every day. The special bond between twins that goes beyond a mere sibling love, what must that be like for Jordan to lose? I hope that the many prayers being whispered in their behalf are bringing some peace and comfort into their hearts.

Today was a clinic day for Peyton. I think she’s getting into prep mode for her upcoming round of steroids because she woke me up at 5 AM with the announcement that she was really hungry for some green beans. And this couldn’t wait until 6:30? Apparently not! So, we got up, I made green beans in the dark with my eyes closed and laid back down on the couch while she ate. Boy am I really looking forward to those all night feedings in my near future.

Peter went with us to the clinic today. We had lots of questions about the ongoing pain issues, the next phase of treatment and the upcoming radiation. I’ve noticed that the past couple of nights, even with the pain medication before bed, she’s started tossing and turning again and even crying in her sleep. This tells me that the pain is getting worse and I brought that to the doctor’s attention. This with the falling problems she’s had recently brought her to the decision to hold the Vincristine for yet another dose.

We talked for a long time about the upcoming radiation treatment. It’s a scary thing because the radiation to her head and spine raise her chances for secondary cancers or tumors, it is very likely to drop a few points off her IQ, it is likely that she will have issues with memory and cognitive skills as she gets older. But the truth of the matter is, if we can’t control and get rid of THIS cancer, there won’t be any second cancer to worry about. As I told Pete, the options really stink, there are no great “yeah, I like that one!” choices to choose from. They all have their very bad side effects to deal with, and there is no easy way out.

We also made the tough choice to go ahead with an unscheduled bone marrow aspiration today. With all the issues of leg pain, I was just in a lot of worry about the possibilities of what it could mean. The procedure itself went easily with the use of the virtual reality goggles and happy meds, and the results were clear, meaning that there are no signs of relapse. This is a huge relief and answer to prayers!! It puts my heart at ease in a lot of ways!

We go back on Wednesday to see if Peyton is going to need blood. Her ANC was good at 900, her platelet count was good, but her hemoglobin was borderline at 8.2. We aren’t back at the clinic for chemo until the 14th of May!!! Wooo hooooo…that’s over two full weeks of chemo free living! But when we start back up it’s a doozy. Unfortunately, it also means that during a portion of the time when we have to be there almost daily, the kids will be home from school and I will be doing a lot of juggling. But I know that we’ll make it work, the clinic staff is great about working with that. On the 14 we’ll start up with the steroids and a series of chemo that makes her counts plummet, her energy level drop to nothing, she needs blood often and she’s going to loose all her peach fuzz. But on the bright side, it’s the last phase before maintenance! Then life is supposed to ease up and we can look forward to an easier schedule of chemo.

We also were asked today if our family would participate in a short video that will be a part of the All Children’s Hospital telethon. I don’t know exactly what it will entail, but they asked if we would do a little spot about Peyton, her story and treatment. We’re excited to help out however we can and are honored that they asked us. She’s a phenomenal little girl and we’ve developed wonderful relationships with the people at our clinic. They are so good to us and we cannot imagine going through all this without them. The funny thing is, they often read this site, so when we go in, they already know the issues that Peyton’s been having! Talk about a time saver. So, thank you to Kathy, Kyleen, Cindy, Teri, Louise, Nancy, Diana, Shawn, Margie, Judy, Dr. Kerr and Dr. Ayala.

On the home front, we’re easing into the final weeks of school. I haven’t got a clue what I’m going to do with the kids this summer, but I’m hoping it will be fun. The kids have exactly 4 weeks of school left. I think we’re all counting down for different reasons. We still have lots of stuff on our plates, however. We have a major history project, a teddy bear parade, a music program, a dance recital, a kindergarten graduation, teacher appreciation week, and numerous end of the year parties. I continue to be so thankful that this year has been such an amazing one of support and encouragement and that our children have been blessed to be at their school. They have been constantly loved and given the extra boost they need to cope with all the changes forced upon them. Thank you to the CBCS family for all you’ve done to help us through this challenge.

Thank you to all who’ve come to this site and left your encouragement, love and support. You truly do not know what an impact you have on our lives. What a lift to our spirits you are, what blessings you share.

f.r.o.G…fully relying on God
—Anissa

I was planning to post about the fun we had yesterday. Maybe I will tomorrow.

Right now, the most important thing is the news that Taylor Arrington went home to the arms of the Lord this morning.

I am at a loss to express how much this hurts me, and I cannot fathom the pain her family is going through. To have lost this sweet little girl, who fought so bravely for so many years, is such a tragedy.

But I also have faith in the fact that she is joyful and healthy at the Lord’s side, with her perfect body that will never hurt again, will never suffer again and will never experience a moment’s sadness.

Please keep her family in your prayers as they grieve the loss of their daughter. I also ask for prayer for all those who loved her and will miss her.

f.r.o.G…fully relying on God
—-Anissa

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"

Yesterday and today were such a blur….nothing big, just lots of it.

Once Peyton’s eyesight was resumed….yes, I know, I should have been a doctor….life pretty much resumed as normal. We ran errands and tried to get caught up on some of the little things that took a back seat to Relay preparations…..things like dishes, laundry and the scary thing that is my floor.

Today, Peyton and I went to Wal-mart and bought some brand spanking new, cool as all get out, really super duper awesome panties! And when we got home I took them out of the package and Peyton was so excited to hold them and see them and love them…and then I dropped the bomb that I was taking her diapers/pull-ups away except when she’s sleeping. She gave me on of her serious looks….the one that says “I think maybe you’re off your meds again, Mom”…and threw herself on the floor to roll around and cry about wanting her pull-ups.

“I want my diapers!”

“No, you’re a big girl now, and big girls go pee pee in the potty. Remember what a good job you did the other day?”

“I NEED my diapers!!!”

“No, Peyton, we bought the pretty new big girl panties so that you can learn to wear panties instead of the diapers.”

“But I don’t looooove the panties!”

“I really don’t looooove the diapers either.”

“But I do.”

So, I won this round! Panties stayed on and she managed to potty 3 times and have 3 accidents. 50/50…not a bad average I guess for the first day in panties full time. It’s a better average than most baseball players, so I’ll take it.

I had really thought Peyton was doing better with her leg issues. She hasn't had her last two scheduled doses of Vincristine, although she is scheduled to get one Monday. Her limp, to my eye, has improved and she hasn't been falling down as frequently. But tonight may have proven me all wrong on that account. She had a couple of those knee buckling falls and then her biggy was when she was walking down the stairs of the Children's Cancer Center and her legs just gave out completely. She took a header down the stairs and I grabbed her by the thigh, catching her with her head just about an inch and a half from the tile floor. She was so freaked out, I was a little shook up myself and she had the nerve to get really ticked off for hurting her leg. She'll probably have a nice little hand print on her thigh tomorrow, but better that than a skull jaring head injury.

Tonight was the Children’s Cancer Center oncology support group. Peter had to work til 9 so I took the kids and went. All three kids took off the minute we hit the door, off to do crafts and eat and play. I went with the parents only to find out….last minute…with hair in pigtails and not a smidge of makeup in sight…that we’re all participating in the making of a video for the Mike Alstott Foundation. And guess who walks in? Yes! Mr. Mike Alstott himself. Again, with the hair in pigtails (functional, not fashionable) and shiny nose and all. But he and his wife were there to help in making a video for his foundation that is putting on a celebrity softball tournament on the 26th, all proceeds going to benefit the Children’s Cancer Center….ok, how awesome is that?

All the parents were asked to speak about their child and what the CCC means to them. The answers were all a little different, the stories varied, but the underlying theme was always the same. Cancer stinks and we find a family of support and encouragement in the CCC, not just the Center itself, but in the families we meet, the kids our kids play with and in the overall feeling of camaraderie that we share. I got my chance to tell a little about Peyton and to share what an amazing impact the CCC has had in helping our family cope with cancer, as a family and individually. We are so thankful that this wonderful group has become a part of our lives. We all agreed that we didn’t want to meet this way and if we had our choice we’d prefer to make friends the old fashion way, but if we’re going to go through cancer, there are no better people than these to help us along the way. However, I could have said all this with a pretty top, hair brushed and styled and a nice face of makeup. Brandy Fishman and I agreed that as tired as some of us looked, we could definitely work the sympathy card!

And let me just say, Mike Alstott is a fabulously nice guy! We have a painting that was donated by Pete’s boss, it is a gorgeous picture of…Mike Alstott. We tried our hardest to find a way to get Mike to autograph it before Relay so that we could auction it. My dad ended up winning the painting and gifted it back to Peter…thanks, Dad, you’re awesome….and now we’re going to get it autographed and probably donate it back to another auction for next year! I’d love to keep that picture, but I just think of all the bids it would bring in and the great use of the money and I can’t help but think it can do more good than hanging on our wall.

Side note…Peyton got to share this big news with Mike Alstott…”I made stinkies in my panties!” Ahhhh, nothing quite like the adoration of a die hard fan.

So…check this out. This is our schedule thanks to our clinic and the CCC….you gotta love this!! Yeah, it sound good, but remember, you gotta get cancer to get perks like this!!

4/20
Charity Golf Scramble from the family of Zach Tucker, it will raise money for the Giving Hope Through Faith organization. I’m taking Peyton so that they can introduce her at the kickoff. (Nathaniel also has Math Olympics tomorrow, so everyone pray for a fantastic day for him. He’s been preparing for this for months and we’re so excited for him. Pete is going to go with him, as I’m not sure that Peyton can take a full day in Ft. Myers)

Then in the evening we’re going to Relay for Life at Grecco Middle school to support the efforts there and our friend Nikki Hawkins (one of the beautiful magazine cover kids) at her job as honorary chairman of this Relay.

THEEEENNNN, we’re heading back to Brandon to visit Relay for Life at Brandon High School….we’re not spending the night anywhere but home, my friends!

4/21
There is an Extreme Extravaganza in the morning to benefit the CCC and we’re going to enjoy food, games, crafts and silent auction.

Then in the evening we’re going to a Tampa Yankees baseball game with a bunch of families from the CCC.

4/26
We have the Mike Alstott Foundation Celebrity Softball game, we encourage you all to come out! This is benefiting the Children’s Cancer Center, it starts at 5PM, it’s at the Bright House Networks Field in Clearwater. There’s going to be tons of NFL players, fun stuff to do and see and it’s all for a fantastic cause. The most expensive seat is , so please, if you have nothing else planned, come hang with us!

4/27
We’re going to support Relay for Life at Riverview High School, where our good friend and neighbor Greg "The Greg" Wynn is supporting a team.

4/28
We’re going to a Tampa Yankees game again

4/29
We’re going to Tampa Bay Storm arena football game with the Powell family! It was so much fun the first time and we’re really looking forward to a second game.

5/11
Angela Powell and I are taking Rachael, Peyton and Adelaine to see “Disney on Ice” at the St. Pete Times Forum.

I’m sporting so many tickets right now I could make a career as a professional scalper! But the buyers all have to sit with a bunch of cute cancer kids and pretend to look sick so they didn't get booted out. So I think we’ll just keep them and have the fun ourselves!

There was news about a little girl in our community who’s been battling Ewings Sarcoma for over 4 years now. Taylor Arrington is a fantastic and brave little girl with a family full of love. Her past week has gone steadily downhill and she was released today from the hospital under the care of 24/7 hospice care. It broke my heart, usually that’s just a phrase people throw around, but I literally felt pain, to think of this family and the loss they’re facing. I just pray for comfort and peace as the family goes through this final stage with Taylor, but I rejoice in the knowledge that she will be God, pain and cancer-free. She will be loved, remembered, missed and cherished forever. Although all kids who have lost a sibling to cancer forever mourn their sister or brother, Taylor has a twin sister Jordan and I know this will be especially hard on her because of that extra special bond they share.

f.r.o.G…fully relying on God
—Anissa

ps…Tonight, my truck took a really long time to decide to start on me. That sort of worries me. Sooo…just pray that whatever is wrong is minor…as you can see, I don't have time for lengthy car repairs!

This morning I had to prod Peyton awake, rubbing her belly and trying gently to ease her into consciousness. Her sleeping is all screwed up again with Relay and then with her napping during the day, she doesn’t want to go to sleep at night. If I thought the codeine would knock her out I was sorely mistaken!!

We took off for the Children’s Cancer Center for our Tuesday playgroup and she was really concerned to hear that Miss Sara, the director of this program, was out sick. I could almost see her little brain cogs turning, then she asked me if Sara had to go to the clinic. I tried to explain that not everyone who gets sick has to go to the clinic…thank God!….and she accepted that pretty easily. The kids had a blast playing and making crafts, we had a special music program there that the children enjoyed so much.

The moms talked about all the fun of having a child with cancer. Pain, sleepless nights, losing control and trying to find the balance of discipline and overindulgence. But we also talked about doing the best we can, reaching out for help when its offered and accepting that we can’t do it all. It’s a hard burden we’re given to carry, but when we all help shoulder the weight, it makes it a lot easier to do.

We got home after eating some lunch and Peyton dozed off hard.

Then the screaming began.

Loud screaming!

I took off running, positive that something was broken, bleeding or ruptured. In fact, it wouldn’t have surprised me to walk in and she was surrounded by cannibalistic aborigines! Nothing but the absolute worst of the worst could produce a screaming fit so piercing.

“I CAN’T SEE!!!!!!!!!!!!!!!!!!!!!!!!!!”

At this point, with my heart racing and my adrenaline pumping I just stood there stunned for a moment. She’s blind! We’ve discovered a new and rare side effect of chemotherapy! She has a brain tumor that’s caused her to go blind!

Then I looked at her.

“It’s because your eyes are still closed, silly.”

One eye blinked at me….”Oh, thanks, mommy.”

Catastrophe averted.

f.r.o.G…fully relying on God
—-Anissa