Hope4Peyton

“Oh no!! Mommy, your coffee tipped over!”

That’s the first thing that came out of Peyton’s mouth this morning about a millisecond after a car collided with the rear end of our car. I’ve told Pete for months that since making the drive to the clinic (which is right by USF) in the morning (when all the USF students are rushing late to class) I was going to get hit eventually (guess who I assumed would hit me!) at the 75/Fowler exit. Today was that day.

But, lo! It was not a college student, hung-over from a night of frolicking at the nearest frat party that flung his automobile into mine, it was a 30-something business man, apparently too busy contemplating his upcoming meeting to notice the 50 cars with their brake lights on in front of him. When we pulled off the road, the first thing I did was get out and check on Peyton, it wasn’t a hard bump, but enough for me to be a little nerved up. I wanted to make sure that her head was still on her shoulders and that she wasn’t feeling the need to call 1-800-neck-injury.

The guy who hit me was dismayed at seeing that I had a child in the car.

“Oh, man, you have a kid in the car. I’m so sorry.”

“Yeah, you caught us on the way to chemotherapy.”

I truly thought his head was going to implode. I had to think for a minute about what I’d actually said….was it “Wow, I’ve been looking for you, I think you’re the single reason my kid has cancer!”?….or was it “They’ve decided that you’re hoarding all the weapons of mass destruction in the trunk of your car and the marines are on their way to flog you to death.”? That’s the expression he had on face. Poor guy. If you have to hit someone with your car, please don’t le it be someone with kids and PLEASE don’t let it be a kid with cancer….that should definitely be a rule in a driver’s ed book somewhere.

There was absolutely no damage to either car, the worst it did was rearrange the dirt on the back of ours…I was pretty put out about that, it had taken me quite a while to get that dirt in exactly the formation I wanted it. We exchanged information and I let him escape before the flogging began.

Peyton’s scraped by on counts and got her dose of spinal Methotrexate and IV Methotrexate. The spinal tap went really well again, thanks to the help of the virtual reality goggles that were so wonderful last time. Peyton got her happy drugs, put on the goggles and went away to her happy place. She flinched a little when the needle was poked around, but other than that, it was a breeze….absolutely amazing.

Dr. Kerr observed her walking, still noticeable limping and I assured her that there was still a lot of pain in her legs and the decision was made to hold her dose of Vincristine to see if it alleviates her neuropathy. She’s not scheduled to get another dose for 10 days, so we’ll see if any of the symptoms subside, and I’m not sure what happens next if they don’t.

Sandy from the Children’s Dream Fund came to see us today during our clinic visit. Nothing like showing a kid who’s all hopped up on pain medication a scrapbook of things like buildings made of carrots and miniature train cities. She was both confused and delighted. This is an organization that works like the Make a Wish foundation, but is local to Florida. They will be fulfilling Peyton’s dream wish. We’re still trying to decide what is the best thing for her and work out a schedule that we might be able to do something, but we are definitely excited about having the opportunity available. Cancer stinks, but there is the occasional perk….hockey tickets, Disney on Ice tickets, parties and dream wishes. I’d give up all those perks in a heartbeat if she could just get well, but if we have to go through it, then the little benefits do make for some times that alleviate the stress and strain of it all.

The Dream Wish that we’re most thinking about doing is called Give Kids the World. It is a 6 night, 7 day trip to the GKTW complex in Kissimmee. It’s a 75 acre place that has individual 2 bedroom houses for each visiting family, a pizza parlor, an ice cream parlor open from 7 am-11pm, pools, water park, a carousal, lakes with swimming, fishing and boats, arcades and computer rooms, restaurants onsite, all sorts of fun and cool things to do. Then the Children’s Dream Fund provides tickets for the family for Disney, MGM, Epcot, Animal Kingdom, Universal, Adventure Island, Sea World…plus money for expenses and food and souvineers and gas, there are no out of pocket expenses for the family. Bonus!! They give the family special buttons to wear at the parks letting them know that we are with GKTW and we don’t have to wait in any lines. SWEET!

The Give Kids the World is an opportunity that is only available to kids who are critically ill. So this is a once in a lifetime chance to go. I don’t know if this will be our end decision, but its sure sounds good, doesn’t it?

Relay is creeping up on Friday, there is so much to be done and organized and we still have a lot of work to do. Our team got passed in donations and if anyone wants to log onto our team site and donate a few bucks it’ll put us back on top and closer to our goal! I have this overwhelming dread that Peyton will get sick in the next 48 hours and this will cause me to miss the Relay, she’s had low counts for the past couple of weeks and got heavy chemo today. I know if it happens it’s not the end of the world, but I’ll be disappointed and miss it.

Our wonderful friend Dave from Dynamic Printing has graciously offered to print off the copies of our magazine covers so that they will be as beautiful as the children they represent. Thank you so much, Dave! There have been so many people stepping in to help out and I just appreciate that so much.

HOLD EVERYTHING!! BIG HUGE NEWS! YES IT REQUIRES A LOT OF CAPITAL LETTERS AND EXCLAMATION POINTS!

Peyton just used her potty! For more than a step stool or a clothes rack! She actually peed in it! Mark the time, 7:56 pm on Wednesday April 11, 2007. This is big news and a step in the right direction….we made absolute fools of ourselves in celebration!

And, her plant finally sprouted some little green leaves. Finally!

It is a monumental day in the life of Peyton Mayhew.

And now we dance!

I can’t think of a single thing that is more important than the potty news so I just have to end this post now and go bask in the fantasy of a diaper-free existence.

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

There have been lots of sweet comments regarding the Easter pictures, and thank you so much! The kids really did look pretty spiffy that day, and I was busting with pride. However, I have to give you the full story on one particular photo. The full body shot of Peyton with her toe pointed and her head bowed is so angelic, she just looks like a little ballerina. And that’s so not how she was acting when the picture was taken. As I sat in the yard, Rachael was standing behind me yelling “You have to point your toe!! Your toe!! Hold your hands out….your toe, Peyton! Look at me, point your toe!!” Peyton looked at her toe and responded “I’m pointing it, see! You’re freaking me out!”

Click! Beautiful moment captured forever

Monday we went to the clinic again but only got a finger poke. The two older kids were out of school that day so I dragged them along with me, but they are champs and were great at the clinic. Peyton’s counts came back decent, nothing to dance about, but enough to get through the rest of the week without transfusion. Her ANC dropped from 600 to 300 and that was a surprise, but everything else rose minimally. They held her chemo on Friday because her counts were high enough, so I don’t know if she’s actually getting her spinal tap tomorrow or not.

Now that I think back on it, Peyton started acting unusually clumsy a couple of months ago, falling down a lot. I attributed it to a new pair of flip flops she’d gotten and her inability to walk in them. We replaced the flip flops with traditional sandals and it seemed to improve somewhat. Then with the news of the peripheral neuropathy and her slight limp, I’ve become hyper-aware of her falling tendencies. In fact, on Monday at the clinic alone, she took three floor dives! I was watching her very closely and when she walks she favors her right side, and when she falls her knees buckle. It’s not that she’s tripping or losing her balance, it’s as if her legs just give way. This is very scary for me to watch, but from everything I’ve read it is a side effect that is temporary and it might require physical therapy, but hopefully will recede when they decide to hold or lessen her Vincristine doses.

With them holding her Methotrexate due to low counts and potentially holding her Vincristine due to the neuropathy, it puts me in a strange frame of mind because I don’t mind the lack of chemo, but I hate to think that not having it could open her to potential relapse. I know that a few missed doses aren’t immediately going to cause leukemia cells to come flooding back in, and honestly, her body harbors enough chemo in it to probably hold it over for a while. It’s just lousy options either way.

With the falling down is the pain. Her legs hurt, and I have codeine to give her. I hate that. When we were first diagnosed and she had a morphine pump, I hated it. They told us that she would get a steady dose of morphine but we could push the button and she’d get a small extra burst available every 15 minutes. I had a notebook sitting on the table, where I wrote down every time I pushed the button. It took us a couple of days to start hitting that button every 15 minutes, not because we wanted her in pain, but we didn’t realize she truly needed that extra burst. When we did start giving it to her the change was lightning fast. So, I don’t want her to suffer at all, if I can keep her pain-free, then I’ll give her the medicine. I don’t want to give her too much, but I don’t want to not give it to her because of a hang up I have. However, I have the hardest time figuring out when her pain is genuine, when she’s just in a crappy mood….or is her crappy mood because she’s in pain? I give it to her when it’s obvious she doesn’t feel well, and she stops complaining and she perks up. Please just pray that the pain that she feels will be relieved, whether through her treatment or if I just get this pain medication figured out.

Jesse Kennedy is a 3rd grader and asked the fifty thousand dollar question “Why did Peyton get cancer?” I drew him pictures and explained the how, the basics of what happened in her body that caused cancer to grow in her blood. But when it came down to it, I told him the truth “No one knows why some kids get it and some kids don’t.” I told him that the question he asked me was one reason why we’re walking the Relay for Life, because if we can figure out why kids get cancer, we can find a cure….it’s our hope. He was very grown up about it, he understood that and was even more motivated to walk. “I want to help figure out how to cure cancer.” If that was a priority in more lives, I believe we’d have a cure by now.

I’m up to 30+ magazine cover kids ready to go for Relay. The parents have all been so supportive of this labor of love and are always willing to help in some way to raise the awareness bar. It’s been a hard job to hit the CaringBridge website each day and read up on kids, introduce myself to new families and come to care for each individual one. Their stories are all so familiar, some with much harder struggles, some with tragic endings and all with a common desire….cure….cure….cure. These kids have the beauty of courage and determination in their eyes. Bald, pale, bruised, tired, scarred, wheelchair-bound, growth-stunted, hooked up to monitors and tubes, they are all gorgeous.

This morning Peyton and I dropped off Nathaniel and Rachael and took off to the Children’s Cancer Center for Lil’ Tales, the preschool play date. It’s ok with Rachael if Peyton and mom are going to the clinic because she knows the fun is equaled out by the not-fun. But now she knows the CCC is a pain-free, all fun all the time kind of place and was kind of miffed that we were going without her. But, Adelaine and Peyton and all their sweet friends were having a blast today, the laughs and squeals were loud and raucous. Each time we go Peyton gets more and more comfortable and willing to play with the other kids, which is awesome because she used to be really friendly with kids her own age and that sort of went away in the past 9 months. She needs this time to have age-appropriate interaction and to remember “hey, little people like me are cool too”.

My initial worries that I would find the group depressing have totally been alleviated. We were laughing so hard today, while sharing our kids’ diagnosis stories, that we were in tears….seriously….in a good way! We laugh at our kids, our families, ourselves, the weirdness of it all, and it’s such a relief to find that special friendship with people.

It all comes with a bittersweet humor. For example, today I found out that one of the directors of the CCC (who lives next door to the pediatrician who diagnosed Peyton…small world, huh?) had worked in adult oncology, then pediatric oncology, and worked with the CCC the entire time. But it wasn’t until after the CCC expanded and she went to work there full time that her son was diagnosed with Lymphoma and later died. I knew that several employees and lots of the volunteers are parents or siblings of cancer patients, but figured that most of them started after the cancer had touched them personally. It turns out that there are several who were already involved when their children got diagnosed. Ok…now, I know you’re thinking that that is really not a laugh-worthy story, but it all comes to this. We, the cancer moms, have decided that with this theory in mind, we’re all going to go apply for jobs with the Florida Lottery and see what happens! Maybe we’re a little off our collective rocker, but man, we were just cracking up!

After Lil Tales, Peyton and I drove up to the Pediatric Cancer Foundation. I am getting flyers from the CCC and the PCF to display at our Relay site. I want information to be available, even if we touch one person to volunteer and get involved, it will be worth it. They are another fantastic organization here in Tampa. While the CCC is dedicated to helping the families of pediatric cancer patients on a personal level, the PCF is dedicated to much the same, but with a high priority in raising funds towards pediatric cancer research. They are involved in research programs for cancers that drug companies and our government don’t feel are a priority. Money goes to research where money will be made, and pediatric cancer isn’t the money maker adult cancers are because they aren’t as common. It’s a stinky system, but the PCF is working to fund that research, to reach that goal. I’m looking forward to getting more involved with them as time allows.

My friend Chris was supposed to walk with us at Relay with her two daughters. Unfortunately, her father has not recovered from a liver transplant he had back in the early fall. He has been in a coma for many months and from an email I received, his condition has taken a turn for the worse. My prayers and heart are with Chris and her family as they wait and pray that God will heal her father, either by letting him improve or by taking him to Heaven.

Keep Peyton’s ever-changing blood count status in prayers. I know they are supposed to go up and down a lot, but at least if they could go up when they’re supposed to and drop when they’re supposed to, it would ease my mind a little. I’m praying for her doctors and nurses to have wisdom, for God to guide them as they guide us through this cancer journey.

f.r.o.G…fully relying on God
—Anissa

What a weekend we have had!

First of all, Saturday morning we went to support a lemonade/cookie stand that our friends Lily (5th grade) and Jesse (3rd grade) were having to raise money for Relay. They’re on our team and were excited to raise some money for Team Peyton. Lily had made flyers and passed them out in the neighborhood the night before and bright and early on Saturday morning we were sitting in the front yard with gallons of lemonade and bags of cookies ready to go. Their goal was $50 and they’d already surpassed that on Friday night before they had even started! They raised their goal to one hundred dollars and with high hopes and the unbounded energy only half a dozen elementary age kids can muster at 10 AM on a Saturday morning, they set out flagging down every car that ventured past the house. They had a wonderful response from friends, family and neighbors. When all was said and done and they counted up the days donations, they’d raised $182 for Team Peyton!!!! How fantastic is that?

We went to a birthday party after that, a roller skating party. Did I mention that my kids can’t skate? Well, they had fun anyway! Peyton put on roller skates and hit the floor with excitement….for all of 45 seconds. Her butt hit the floor and she demanded I take those skates off immediately. “I don’t love falling down”….well, who can blame her? Putting a toddler with a low platelet count on skates is just asking for the department of children services to come out asking what’s with all the bruises! It was chaotic, loud and frenzied….all the elements of a great 6 year old birthday party!

Saturday night we were treated to box suite tickets to a Tampa Bay Storm game. It’s our arena football team and we’ve never been to a game. We didn’t really know what to expect, but let me tell you, it ROCKS! The game is fast, fun and totally cool to watch. If you ever get a chance to go to one, definitely do it. Thank you to the Children’s Cancer Center for sending us to another fun event! We saw lots of the families that we’re getting to know from playgroups and support group and it was nice to enjoy this night out with them.

Easter Sunday we didn’t wake up to baskets…we told the kids that the Easter Bunny dropped them off at Grandma Sharon’s house….and frankly, I didn’t think Peyton could handle the idea that the EB would be breaking into our house in the middle of the night while we’re sleeping and vulnerable. Candy or no, she probably wouldn’t sleep for days!

How angels sleep

The kids looked phenomenal for church, hats, dress clothes, pretty white shoes and fluffy hair pretties. It wasn’t until we got to church that we realized that Rachael’s shoes were on the wrong feet….then we realized that only one shoe was on the wrong foot…yes, the child was wearing TWO right shoes. They were the cutest sandals given by a friend and somehow we ended up with two right ones…of the same shoe, at least. She looked adorable regardless.

Monday morning we have a clinic trip for a finger poke first thing in the morning. If Peyton’s counts look as though they’re on the downward slope we’ll schedule transfusions for Wednesday since I told them that we can’t do it on Friday with Relay prep and all. They’re so good about letting me say “I know my kid has cancer, but can you work around my schedule please?” They do and I love them for it! Peyton’s already scheduled for her chemo on Wednesday, but it’s Vincristine, which is the medication that is causing her leg problems, so I’m anxiously waiting to see if they decide to keep up with the treatment.

I hope you all had a wonderful Easter full of blessings and messages of God’s love and purpose in your life.

f.r.o.G…fully relying on God
—-Anissa

I title this picture
“Still Just Dirt”

ps…It just dawned on me that the picture at the top of the page in the Peyton's Hope Page banner is from Easter last year. How she has changed…how we all have. What an amazing year it has been, and not all good in our eyes, but all in God's plan and will. I cannot tell you what it means to be able to post these pictures today of her looking happy and healthy, to be sharing one more day with my family. Every moment is a precious blessing.

Thank you all who visit and care and love and share this journey with us. You lift us up and give us support and encouragement and are a constant source of blessing in our lives.

Having a kid with cancer is like swimming in a toilet. Some of us get a bigger piece of crap to hang onto than others. It's all crap though!!!!!

—-quote from another cancer mom

Thursday night was a trip to the Children’s Cancer Center for the whole family. Easter party #3 for Peyton this week. I get the feeling that she’s going to start thinking that everywhere she goes she should get a basket full of eggs and candy…and who are we kidding, she probably should, the spoiled little monkey. There was a dinner provided by Boston Market and general chaos as there were many more families there than normal for the Thursday Night Family Oncology Support Group. The Easter holiday party and the fact that most kids didn’t have to go to school on Friday made for a good showing of people.

After we all ate, the kids were rounded up for games, crafts and various mischief, the parents went up to a separate room for coffee and conversation. It was almost like an AA meeting “Hi, my name is Anissa, my daughter has leukemia, we’ve been in treatment for 9 months”. But it was so much more than that, we shared stories of diagnosis, updates of treatment, we commiserated on the difficulties as parents of kids with cancer….and kids in general…we were able to really just say “Hey, there are days I’m not handling this well, I’m lucky to get out of bed and brush my teeth” and everyone there nodded their heads in understanding. It was awesome!

When our turn came up I brought up the fact that we’d just gotten the info on Peyton’s leg pain and the possibility of peripheral neuropathy, and heads just flew to turn around and give us assurances. One mom told us that hers was bad and there was physical/occupational therapy involved, another mom told me her son’s was mild and went away gradually on it’s own. It was just so comforting to see the fact that others had been there, gotten through it, empathized with our fears and were able to offer encouragement. There was so much unexpected laughter in the room, there were also some stories that just broke my heart. We met a couple with a son who is going through the exact same protocol as Peyton and they were able to share a lot about the cranial radiation that lays ahead of us, the procedure and the side effects.

This is what a support group is.

Of course, halfway though the grown-up part of the evening, Peyton came tromping up the stairs and crawled into my lap, the worst of the worst had happened.

“Mommy, the Easter Bunny is downstairs. He’s riding a scooter. I don’t love that Easter Bunny.”

A scooter riding Easter Bunny….she at least let Santa stand next to her for a picture, she’s doomed for Easter forever.

Nathaniel and Rachael had Good Friday off of school today. Peyton had a clinic visit with double leg shots of Peg-Asperiginaise….fun for everyone! It actually went very well, they were well equipped with volunteers and the girls played hide and go seek for a long time with them. Nathaniel loves the fact that he just has time to sit down and play video games, so I let him. Peyton screamed like a banshee for most of her needle-time. It was worse than the average port-accessing and Peg shots, but we got through them, she got more eggs…Easter party #4….high terror Easter Bunny visit #4….you’d think she would get used to him by now, but alas, NO.

After we left the clinic, I took the kids to Cracker Barrel. We saw lots of our friends there, Peyton was wearing her special apron and greeted with smiles and hugs. Like her own personal Cheers, I half expect a theme song to play when she walks through the doors. But the staff is always cheerful, full of good wishes and smiles for our family and I cannot think of a restaurant that has a better crew working.

After lunch, we added two kids to our numbers, Lily and Jesse. They joined us for an afternoon of swimming and ice cream cones, and after we got home, the neighborhood kids starting showing up to play basketball. It’s fun to be the house where the kids come! I love it, and we have some fantastically fun kids in our neck of the woods. Which, let me tell you, it’s a good thing they’re nice because future NBA players they are not. But they have a good time playing and for a group of boys, they were really nice to Rachael and that says a lot about the quality of kids they are.

Peyton promptly passed out after we got home from DQ. I was a little worried that she’d be up all night, but she’s also full of chemo, had a very emotional clinic day, I intentionally wore her out at the pool and stuffed her full of ice cream…I’m surprised I didn’t pass out too. She woke up around 9 pm….joy!….but she’s still in bed, lazing around and watching a movie. She doesn’t feel great, complaining that her tummy hurts. She was rubbing her calf and tucking her legs up next to her body and I asked her if her legs hurt and she said yet. I hate to do it, but I dipped into the prescribed codeine for pain. I guess if the doc thinks it’ll do the trick I will let her have it, but it also seems like such a heavy narcotic to give a 3 year old. I also know parents who have to give their kids morphine for their mouth sores, so it’s about making sure they’re comfortable and pain-free, which is the most important thing.

We got 3 new members for our Relay for Life team, that brings the current member total to 32!!! We’re halfway to our donation goal of five thousand dollars. Lily and Jesse are having a lemonade and cookie fundraiser in their neighborhood tomorrow. Lily made a handmade flyer that they made copies of, with a picture of Peyton, and she went door to door to let them know the sale was Saturday morning. They are so excited to raise some money for Team Peyton and were shocked and thrilled when neighbors started showing up with money in hand before the first cookie was ever baked. They’ve already raised sixty-eight dollars and haven’t sold a thing yet, and now they are seriously jazzed about what they’re doing!!

The kids and I are going to head over there to help out with the lemonade stand in the morning and to add some serious cute-factor with Peyton there. Right after that we have a roller skating birthday party (none of us roller skate with anything resembling something you might call skill) and then in the evening we are heading to the St. Pete Forum for an arena football game. The Storm team has donated five box suites to the Children’s Cancer Center and we are totally going to take them up on some tickets! We’ve never been to an arena football game, so it should be pretty exciting.

I got the ok from Dr. Kerr to take Peyton to Sunday morning Easter service. She and Rachael both have beautiful dresses to wear and I have no idea what Nathaniel is going to wear. Interesting dilemma since he already treats clothes shopping like a root canal. He’s 9!! At 9 shouldn’t you still be thrilled to be getting new things? I think so too. But, Dr. Kerr said it was ok to head to the super-full church service even though her counts are borderline….she says to me….you gotta love oncologists with a sense of humor…. ”don’t sit next to anyone who’s coughing”. She cracks me up!

f.r.o.G….fully relying on God
—Anissa

Ps….Since I figured out the “contact me” issue on this site I’ve gotten a number of great emails. I truly hate to think of all the people who’ve sent an email and just thought they got ignored…ugggg!! Seriously.