Hope4Peyton

Friday we were blessed to get some wonderful news. I had been stressing out in a big way about waiting until Wednesday for Peyton’s CBC to find out if her blood counts had come up and wasn’t quite sure how I was going to make it through the weekend without obsessing about it. In fact, all I was thinking about was how I was going to keep myself from thinking about it, which really wasn’t getting myself anywhere. So, Friday morning we went to the clinic so that Peyton could make her second tv camera appearance in a commercial shoot for a Moffit/Pediatric Cancer Foundation venture in pediatric cancer research. Peyton didn’t do much, she painted and looked cute…more of the normal, I guess. It was a funny thing though, most of the kids that were there that day were either kids that were already in maintenance or kids that were there for hematology issues, so most of them had their hair, Peyton was the only baldy in the room, that was definitely out of the ordinary. But while we were there, I asked them if they could squeeze her in for a lab and the were gracious enough to shuffle her into an already busy schedule and get a finger poke.

Peyton saying "I am a ROCK STAR!"

It came back great!! All her counts were up. Her ANC was over 1000 (up from 600), her hemoglobin was over 10 and her platelet count was over 200. The thing is, these are all still well below normal for a healthy child, but for one in chemotherapy, these are fantastic! I was thrilled and just relieved because this meant that her body had finally rebounded and there was nothing suspicious keeping her counts down. Now, that they’re comfortable with her counts she won’t need the bone marrow test on Wednesday and we’ll proceed with her next phase of treatment. It’s pretty ironic when the nurses hug you in excitement of great counts, knowing how happy they make you so that we can all start giving her medicine that will drag them all down again. But we were all happy that the counts had come up, and were relieved that we no longer had the immediate cloud of relapse hanging over our head. Yes, it’s always out there as a threat, and we’re never completely free of it, but at least for now we know that she’s responding as she should. And we’ll take that as a blessing and thank God for it.

Friday we also said goodbye to Peter’s father who had been staying with us for several days for a visit. It’s hard for us to get time with Bob because he has Parkinson’s and cannot come up and visit on his own the way he’s been able to in the past and we haven’t been able to get down to visit him. `The kids so enjoyed having Grandpa here to push them on the swings, to joke with over dinner and to listen to their endless chatter. It seems liked Grandpa soaked up a lot of memories to take home with him also. The kids change a lot in six months, and times goes by too fast. Pete and his dad had a great visit, luckily Pete’s work schedule allowed him to have the time off that Bob was here and they got to spend that time together. Thanks for Bob and Pat for working it out so that Bob could come up to visit, it meant a lot to us and we loved having him here.

Saturday was Bowen Powell’s (Adelain’s big brother) birthday! We met their family for a day at Busch Gardens, and we had a blast!! It is such a different day going with six kids than going with just two adults, fun in its own special way. We had coolers of food and drinks, changes of clothing, all sorts of random supplies, in fact, we could have made a six day excursion up Everest and probably held our own.

We took turns, dads taking off to ride the big rides that the small kids were too short to ride while the moms hung out in the kid’s areas and then vice versa. It worked out great and it was so much fun. It was one of those days that the kids were practically crippled with happiness so that they complained all the way to the parking lot about how much their feet hurt. Note to all: Sheikra is fun the first time, and the second time, but the third time is overkill….just ask Angela Powell!! She was green until we finally left the park. Poor Angela.

Today we celebrated spring and daylight savings with the first car wash of the season. Of course if turned into a free for all, with everyone drenched to the skin. I am a firm believer that once you’ve put on your bathing suit, you’re just asking for it! And the truck did get moderately cleaner.

We don’t always get the answers that we want to prayer. If we pray the way we’re supposed to, we do it with open hearts and ask God that His will is done, but it’s hard not to remind him that we do have a preference in the way that the outcome might go. I have faith in God’s wisdom in the path that Peyton’s life will take and I am so thankful that He continues to give us more time to be a family, to be blessed each day with Nathaniel, Rachael and Peyton. Life is so precious and uncertain, but the one thing we do know is that we are loved and that is a mighty and wonderful thing.

f.r.o.G…fully relying on God
—-Anissa Mayhew

Ps….I just saw this newscast….I couldn’t believe it. Grandpa Bob took us to DQ this week and I saw the flyer about Jessica Rose, a little girl who has neuroblastoma while we were there. I later realized that she goes to the same clinic that we do and we've met her and I never realized that she had such a poor prognosis. This little girl had a donation jar at the DQ and someone actually stole it off the counter. This truly stunned me and I can only imagine the kinds of terrible things that should happen to this man….something along the lines of being staked to the ground and attacked by fire ants! But please, visit Jessica Rose's website and keep her family in your prayers!

There are days it seems that each step forward just takes us one two steps back. We are so very blessed to have encouraging friends and family surrounding us each day, to keep us on track and to lift us when we fall. We have our children and each other to rely on day in and day out, to laugh and cry and battle and comfort. We have God on our side, that’s the single most important tool we wield each day to get through.

I try to hold the good days inside to mull over when we have days like today. In fact, sometimes I have to just close my eyes and swim around in complete denial. It might not be an effective coping device, but it IS a coping device, right? I had a fantastic morning. Peyton slept well last night, she was in a fantastic mood this morning. We had plans to go to breakfast with our friends Lisa Bedrosian and her son Isaac. We passed our fliers for Team Peyton and got a bunch of positive responses from people who were jazzed to join up and be a part of our Relay team. I am so excited about that.

Breakfast was beautiful. It was a time when Lisa just encouraged me and helped me regroup. She shared concerns that she and other friends have had for my family and hopes to help us out in different ways. It touched me so deeply that I really didn’t know what to say or how to respond to that. Me! Not with the talking….I know, crazy, huh? But yeah, I was just so overwhelmed by their goodness and lovingness (I want you to know that spell check did not try to correct that word at all, I’m surprised) that I just let the tears fall and let it heal some of the stress I’ve had the past few days.

Since Tuesday when the waiting game began to see if Peyton’s counts would rebound, I’ve felt stretched out, just pulled to the emotional max. I took the kids to the grocery store and had to go by the paper aisle and buy a box of Kleenex because I started bawling in the soup aisle. It freaked them out and I felt bad, but I just couldn’t control it. I couldn’t explain to them either. I couldn’t make them understand that Mom was jus stressed out and overwhelmed and scared and freaked out a bit myself. Peyton told me she would pray for me….it fixed a lot….and then she asked if I could go ahead and make dinner now….I don’t know if she meant she was praying that I would feel better or if she was praying that I would make dinner. Either way, I made dinner. And I got through the day.

But my morning was just full of happy. Good friends and positive attitudes and the right words and God’s love just being showered down on me.

Followed promptly by the sounds of our next bump in the road. I’m praying for extra strength through this because while it’s not one of the cancer-quality bumps, but it’s a definite speed bump in the road of our life. It’s not health, it’s not a make or break problem, it’s just one of those “you’ve got be kidding me that this would happen right now of all times” kind of things. Pete’s car was making all these funky noises and we took it to the mechanic with feelings of dread in our hearts. With good reason, because the report came back that the engine is toast. It seized and has to be completely replaced. We have a warranty on the car, but of course we now have to fight with the company to make sure that they will cover the cost of the repair because they’re going to find every way they can to get out of doing it. We know that God is in the details, we’re just praying that he’s into Pontiacs also. I don’t know how this is going to play out, but I’m working hard to concentrate on the wonderful morning that God provided me to bring my spirit up so that it could handle what was going to happen next.

f.r.o.G…fully relying on God
—Anissa

Peytonism for the week "I like potato chips. They're hungry, shiny and delicious."

Team Peyton continues to make progress. There’s been some questions about the Relay for Life event that we’re going to be a part of and hopefully I can clarify some of it.

The event is at the USF soccer field on April 13-14. It’s an overnight event so you can plan to bring a tent, cooler and make a night of it. Or you can come, participate for as long as you can, and go home and sleep in your comfy cosy bed while the rest of us think resentful thoughts about you from our sleeping bags.

Yes, kids are welcome to come, we are planning to take all of ours. In fact, we want them to be there to have the full experience, to have more understanding of how cancer affects families just like ours.

There will be a survivor lap, where cancer survivors and those currently in treatment will be walking a special lap….of course, Peyton will be there! No, you do not have to walk all night, you can if you want….if you want to get donations based on the number of laps then I’ll walk behind you with a cattle prod to keep you moving. But if you get flat donations, then you can roll up with a beach lounger and do crossword puzzles if you want. We just want to encourage anyone who can to come, be a part, spread awareness, get the word out there and make a difference.

Now, for those who live far enough away to be thinking you’re safe….you’re not. What you can do to help is join our team online, collect donation via the team website for Team Peyton and help make our endeavor a success. Take a lap around the block and think of how much it means to have the healthy people in your life. Do this for the child in your life who doesn’t have cancer and with any hope at all, never will.

I’m doing this for Peyton, for my mother, my grandmother, Peter’s grandmother, Peter’s aunt and cousin….the lists go on and on. People are always telling me about the ways their lives have been influenced by cancer, a friend, a relative, someone in their life has touched them.

f.ro.G…fully relying on God
—-Anissa

“I have this itchy patch of skin under my chin. I think it’s stress induced psoriasis.”

“Hmmm.”

“It’s going to spread up my face and in two weeks I’ll look like the kid from the movie Mask. Will you still love me?”

“No. Let’s not kid ourselves.”

Yesterday, I took the kids to Plant City for the Strawberry Festival. Rachael was a little miffed because she doesn’t eat strawberries and didn’t get why they can’t have a Banana Festival. I told her we might just have to have out own Banana Festival at home. But we did eat Strawberry Shortcake, we bought a Mancala game with the most beautiful marbles (it’s a marble game, I don’t play, but the kids assured me that I could be taught), and the kids rode all the midway rides they could stand. Probably more than they could stand because Nathaniel looked a little green for a few minutes, I did explain the why’s of waiting to eat until after you ride, but some lessons you have to learn for yourself. It was a beautiful day with the kids, they had so much fun and there was so much to see. Even Peyton went on some of the smaller rides and can tell all about how she went “high high high, but not up to the trees, that’s too high”. Nathaniel was fascinated with the "jumbo turkey legs" and Rachael would have bought one of every craft she laid eyes on if she could have. I had to snatch the kids away from more than one stall as the owners gave them the evil eye for touching all the breakables…..I had to explain the "you break it you bought it" motto.

This morning we had a clinic appointment scheduled for Peyton to get her spinal injection of Methotrexate, and she’d had all last week off because her counts were too low to start Interim Maintenance. I was fully expecting her counts to be up since that put her two weeks from receiving any chemo, but I was totally surprised to find out that her counts were still too low, and had not come up much since last week.

There’s also been the ongoing issue of Peyton complaining that her legs hurt. It’s usually around bedtime that she verbalizes the pain, so it’s always questionable because she’s pretty smart about manipulating the situation. But it’s been constant for about two weeks that she’s complained about her legs and that’s a concerning regularity to me. Just before Peyton was diagnosed she’d been sick with a virus and had been feverish for the better part of three weeks. The break through was when she woke up in the night screaming from pain. I wasn’t sure what was wrong with her, gave her Tylenol and put her back to bed. The second night she woke up in pain I called the doctor and then we got the bad news about her cancer. This weighs in my mind because of the pain, she only had a few days of pain before we were diagnosed and it was only at night that noticed it hurt. So, this parallel between the leg pain she’s having has had me a bit at odds about what to do.

I feel so lucky that I have the nursing and doctor staff I do, because I never hesitate to ask them anything, no matter how stupid it might seem. I take them every issue and whether they let me know it’s common or something worth keeping an eye on, I feel that they listen to me and I know they love Peyton and what’s better than having a great medical team? A great medical team that loves your kid! When I brought up Peyton’s leg issue, Dr. Kerr immediately came in and talked to me about what that might mean. It could be any number of things, a reaction to her Vincristine, growing pains, exercising her legs more than normal, or it could be a sign of a relapse. Dr. Kerr also explained that her counts not coming up for two weeks is not out of the ordinary, but we are going to hold an antibiotic that she takes every weekend that can suppress counts and see if her counts are up on next Wednesday. If her counts come up, she will start her normal chemo. However, if the counts are still low and she’s still having the leg pains, they will do a bone marrow instead to see what’s going on.

It’s hard not to get wrapped up in the bad possibilities. I’m working hard not to consider that this could all be signs that she’s relapsed, she’s going to have leukemia cells in her marrow and we’ll have to restart a much more intense treatment. I know that stressing about it isn’t helping anything and all it will do will drive me insane with the “what ifs”. Part of me has just been so comfortable with the fact that she’s flown through this easy and breezy, minimal hospital stays, no big problems, she’s been the healthiest sick kid ever! She’s felt good for the majority of her treatment, and has never lost her spirit and spunk. But I know that doesn’t mean that she’s safe from her cancer. It doesn’t mean that there isn’t the possibility of it coming back. I’m just leaving this in God’s hands, because whatever happens is going to happen for His reasons and no amount of freaking out on my part is going to change that.

Please pray that Peyton’s body will catch up with her spirit and her counts will come up. Also pray that no matter what happens next Wednesday, we’re able to find the strength to be Peyton’s parents throughout this, to be a strong family all around and to shine God’s power through each day.

We also got the news that our oncology group, The Pediatric Cancer Foundation and Moffitt are coming together to do research of pediatric cancers. This is a field that has really stopped making a lot of progress, most cancer research is done in fields of adult cancers and from what I’ve read, a major breakthrough in pediatric cancers hasn’t happened in the last couple of decades. So, these three groups are going to work towards making something happen and I think that’s fantastic! Kyleen, our child life specialist, asked us to come to the clinic on Friday so that Peyton can be involved in the shooting of a video that will be used for this effort. I’m not sure if it will be a commercial on TV, a video that they’re making or what exactly, but I’m excited that Peyton will be a part of this. That we can somehow help a little bit by raising the awareness of the need for more research, by helping to put a sweet little face of reality on the issue of pediatric cancer. Fewer children are dying of cancers now than 20 years ago, but it’s still too many, it’ll always be too many.

Peyton will also be painting a canvas that will go for sale at a silent auction that will benefit the All Children’s Hospital. When it’s completed and available for bidding I will let you all know, I’m sure someone’s empty wall space is just crying out for an original Peyton Mayhew. I warned them that her painting style is a little Jackson Pollack, a little Picasso, a little early Renaissance finger-paint, but they’re hip to that.

f.ro.G….fully relying on God
—-Anissa