Hope4Peyton

When I read message boards on cancer websites to get a feel for what others are going through and to see if I’m normal….which, anyone who’s known me for long can probably answer in two letters…I will often times read about how isolated people feel, how they lose their friends, how people pull away and they are made to go through their pain very much alone. I don’t understand that, and I feel terrible for these people because we have been so blessed to have those around us just embrace us in love and support. Also, we’ve been very popular lately because our weekends are just jammed packed full of fun and craziness! We just never realized how cool we were before!

Saturday, Rachael went on her first outing with her Big Buddy Mentor Marie. If you don’t remember, Nathaniel and Rachael have been matched up with medical students from USF as buddies. They get together with their buddy once or twice a month and the Children’s Cancer Center sends them out to do fun stuff and just get some nice one-on-one time. Marie picked up Rachael in the morning and they took off much to the anxiety of Peter who has a hard time sending his kids off with semi-strangers…I do not seem to suffer this strange affliction…I’m thinking FREE time! (Note to those who might not get my sarcasm…I totally made sure that the med students got a fairly hefty security check before they allowed them to be a mentor.) When Rachael got home she was practically floating! They went swimming in the pool at Marie’s apartment, they ate lunch at Olive Garden and they went to the pinnacle of all girly hangouts, the Mall. Rachael gushed about how much fun they had, how wonderful Marie was and it was awesome to see my daughter enjoying this opportunity in exactly the spirit in which it was provided.

Nathaniel, Peyton and myself took advantage of a beautiful day to go to a craft fair at our school and then I took Nathaniel and two of his friends to a birthday party. This was the birthday of his tae kwon do instructor Mike and his daughter Gabriel, who is in Nathaniel’s class. We had a blast at the party and I came in 2cnd in a push up contest behind a guy with only one hand….good times!

Sunday we went to church and then had lunch with Nathaniel’s mentor Charlie. What a great guy he is, he and Nathaniel hit it off and I’m betting they have a lot of fun together. They both love video games and roller coasters, comic books and Charlie’s going to work with him on his basketball skills. It’s sort of like the kids have that cool older cousin who can take them to do all this neat stuff.

After lunch, the whole family went to St. Pete to spend the rest of the day with our friends the Powells. Their daughter Adelaine is just 3 months younger than Peyton and she is fighting the same kind of leukemia. They have two boys, Bowen and Mason, and they are three of the sweetest kids I’ve ever met. Nathaniel and Mason were off and doing those things that boys do. Bowen and Rachael were on the swing set with Adelaine and Peyton just basking in the great Florida sun. Pete and Doug watched football games while monitoring the standings of their fantasy football teams, it’s so great that Pete’s made his “special” friend. Angela and I spent the afternoon just wrangling kids and talking and sharing our frustrations and joys. How amazing is it to find friends in the midst of all the unhappiness that and surround a situation like cancer? We’ve met this incredible family who we’ve just bonded with and have so much in common with. We’re thankful for God bringing them into our lives.

Our weekend ended on a low note with Peyton throwing a horrific fit in the car as we tried to leave. I know that my mother would agree that I have thrown some kicker temper tantrums in my heyday, but this child was strapped in her carseat, screaming like she was on fire, and managed to strip off every stitch of clothing on her body, diaper included. It’s frightening for Rachael and Nathaniel to watch Peyton have these episodes of hysteria where she’s totally out of control, and it’s draining on Peter and I trying to figure out how to reach her and help her out of her fit. We did finally get her to calm down, we had to stop at a Walgreens so I could put clothes back on her and she immediately went to sleep.

But I have to say that one bad tantrum was worth it because we had an awesome weekend with friends and got to enjoy being a family.

This week will be a busy one as well. Angela Powell and I are planning to go for a visit at St. Joe’s hospital with the girls to see Kaylie, the 9 month old with leukemia. Tisha and Kaylie have been at the hospital for almost 6 weeks straight and we’re going to go take the girls to break up the monotony and hopefully spread some cheer.

Wednesday is Peyton’s next round of chemo, so we’re hoping her counts are good and that it’ll go well. No big owwies for her, we’re just accessing her port and doing medications via her port. We’ve enjoyed our week clinic free.

Thanks to all the wonderful families who provided meals over the last two weeks. It was just a relief and a blessing to have, especially on the long chemo days that seem to take so much out of us all. The continued love and compassion we receive on a daily basis is fantastic!! I hope we are able to share that with those we meet and who’s lives we influence.

F.R.O.G
Fully relying on God
—-Anissa

Today we started our day with Peyton at a Halloween party given by the Children’s Cancer Center. It was such a precious event, the kids had a wonderful time playing games, winning prizes, doing crafts, getting their faces painted…and meeting Bucs players Michael Clayton, Michael Pittman and Jermaine Phillips. Ok, so the kids didn’t really care at all about that last part, but it was very cool for the parents! It was funny to watch these big athletes interacting with these tiny little children, working hard to make them smile and laugh, they were very sweet guys.

Peyton with Michael Pittman, fishing for candy

Peyton and Jermaine Phillips mugging for the camera

So, funny little side story. On the way to the clinic after the party, Peter’s telling me how one of the players is great, but he has a specific issue. I told him that it’s a good thing he didn’t say that to his face, because as funny as it would be for future telling, getting beat up by a bunch of NFL players at a cancer function just isn’t the IN thing to do. My sensetive and thoughtful husband realizes….he missed his chance to heckle NFL players to their faces and they wouldn’t lay a hand on him! Not only are we surrounded by kids, but the tv crews were there. So, for future reference, Peter is a Steelers fan, and the Bucs have the right to kick his heiney!

Michael Clayton dropping Peyton after she realized she didn’t really want this stranger to hold her.

The CCC has given our family some wonderful opportunities to just be a family, and be involved in activities that we otherwise couldn’t do right now. Nathaniel and Rachael are participating in the Big Buddy Mentor program and are set up with a new friend to spend time with that devotes singularly to them. The CCC is sending cancer families from all over the area to a Tampa Bay Lightening game this month and they gave us tickets today to take the kids to see the Wiggles. That’s something we’d never be able to do because of Peyton’s immune system, but they have a private box suite that gets donated for them to be able to offer to families like ours that can’t be in the general audience….how awesome is that?!

We’re excited about all the upcoming events and we’re praying that it works out that Peyton is well enough to enjoy these adventures.

Our clinic visit went well today. Peyton received chemo via two shots in the leg which she didn’t think a whole lot of, but she rebounded quickly and was in good spirits with a cup of chicken noodle soup in just a few minutes. We’re now done with clinic visits until next Wednesday, so what a great break for us! We’re so thankful for that.

The kids were just hysterical in getting ready for Halloween night. They were excited and eager and could think of nothing else. Rachael was dressed as Belle from Beauty and the Beast, Nathaniel was a ninja and Peyton was still Cinderella.

The kids apparently doing their impression of the Supremes

We did a walk around the neighborhood before Peyton got tired and wanted to come home. Peter finished up with the older two and we now have enough candy to sugar-high a small third world country. Just what we needed! But they had so much fun, it was so good for them to have this wonderful bit of normal.

I hope everyone enjoyed their Halloween night, however it was spent. Whether you walked house to house panhandling for sweets like us, repeatedly answered the door doling out goodies to goblins and princesses, or just turned off the lights and enjoyed knowing how frustrated the kids walking by were that you were hoarding all your candy, I hope your night was as good as ours.

F.R.O.G.
Fully Relying on God
—Anissa

Peyton enjoyed the non-treatment of her clinic visit so much! Many of the clinic kids showed up in costume, ready for good times with candy and games. Kyleen, our child life specialist, the Children’s Cancer Center and many volunteers set up a fantastic time for the kids. They trick or treated their way through the clinic offices, with bags that got so full with goodies that Mom had to carry Peyton’s because she was dragging it on the floor. After the candy trek, the kids went outside where they got their faces painted (Peyton opted not to, she was not into that at all) and enjoyed lots of treats and prizes. It’s so important for these kids who miss out on so many fun experiences due to germs, hospital stays, physical limitations of the illnesses themselves to really get days that bring joy into their lives. And for it to be such a great time at THE place where most of their treatments are done is extra great because it gives them good feelings and memories of the clinic.

This is Peyton’s little buddy Carly, who gets treatment for brain tumors. She is an amazing little bundle of energy and smiles, say a special prayer for Carly.

Peyton’s treatment portion of the day was less fun. As you can guess her counts were up enough to start this chemo cycle. Since the day that she had her breakdown at the clinic due to repeatedly having her port come deaccessed, she’s started fighting her treatments tooth and nail. Just holding her down to get her port done is a wrestling match. I’m hoping with time she’ll get back into the groove of her treatments and realize that the screaming and hollaring just make it worse, because she starts before anything’s being done. Her anticipation and fear of pain are worse than the actual amount of pain there is because as soon it’s over, she’s like “oh, that wasn’t so bad” and is back to her normal boppy self within minutes. It’s just frightening for her and that breaks my heart.

Today she had her spinal tap and it took three of us to hold her still enough that the doctor count admninister it. She hates to be held down and for this procedure they have to practically bend her in half. She cried and fought the whole time today, which isn’t normal and it made me feel sick just to watch and hold her head and talk her through it. She doesn’t normally cry like this, we’d gotten to the point where she could sing and talk through it, but today it was just miserable. She had about 20 minutes of recovery time where she had to throw things and scream and cry, and then she ate a bowl of chicken soup and all was well again.

Days like these are physcially and emotionally draining on both of us, and we came home and both took a long nap. This cycle of chemo involves spinal injections of methotrexate, IV injections of methotrexate (again!) and Vincristine and double leg injections of Peg Asperiginaise. We’re also switching from 4 days a week to treatment every 10 days, so this should be a bit easier for us all. I read a report that says if they haven’t relapsed within the first 20 weeks they show a higher success rate for not relapsing, the next benchmark is 18 months. So, I believe that we’re 16 weeks into this and so far her most recent bone marrow came back with positive results and her spinal results should be back soon.

We’re looking forward to an easier clinic visit tomorrow. Cross your fingers and say a prayer, I know we will.

f.r.o.G.
Fully Relying on God
—Anissa

Tomorrow is a day of maybe.

Peyton has a clinic appointment in the morning and the first thing they will do is check and see what her blood counts are to find if she's able to start her next cycle of chemo. She's been chemo free for a week and a half, so her counts may have gone up, but we really have no idea.

If she does not make counts, then we have an easy week and we keep checking to see what her blood counts are. If she does make counts, she will have her methotrexate medication which is one that they administer via spinal tap. It's never fun, but hopefully she'll her pain medication will keep her sedated enough to get her through with the least amount of discomfort. It's so hard to continually put her through these procedures and watch her have to suffer the fear and pain of treatment, but she's a strong little girl and I know that when we're all done with this, she'll be a healthy and happy little girl again. I can't wait for that day.

She's going to wear her Cinderella constume tomorrow because they're having a Halloween party at the clinic. She just told me that she's going to wear her crown and be "soooo beautiful". She just has no idea how beautiful she is to us every day. Her hair is starting to regrow and it's looking a little thicker and where it didn't fall out it's gotten a lot longer. She looks like the sweetest little peach with her halo of fuzz. She's lost all the weight she gained with the steroids and although the steroid phase was a nightmare, I'm glad for that buffer of extra pounds she had to loose. To think that if she didn't have it, she'd only weight about 16 pounds right now. She's was holding around 28-29 at last weigh-in. She's starting to get a little bit of an appetite back, and she's all about rotisserie chicken right now….pretty funny the things she starts to crave. No other kind of chicken will do! But I will feed her anything that she's willing to eat.

Her foot is all healed up now, we finished up the antibiotics for her cellulitis and that's one experience behind us.

Peter's on vacation this week and we have lots of projects we are hoping to get completed. We have a grocery list of to do's. The last two vacations that Peter has taken ended up in my stroke and Peyton's leukemia diagnosis, so I know that i am sort of holding my breath through this week, hoping there's no bad news of any sort. Rather gloomy thought, but I can't help it.

On the upside, I'm learning to knit! I have lots of downtime at the clinic, hospital and at home when Peyton just wants me to sit or lay with her and so I picked up some yarn and a book and went to work. Can't say I could clothe the family with my creations, but the craft is improving every day.

Rachael had gymnastics on Saturday and she was just glowing from happiness when she came out. She said "Mommy, I loooove gymnastics, I'm going to be good at this." And it's wonderful to see her enthusiasm and for her to have a physical outlet to work out all that Rachael energy. She is a cutie in her little leotard and is the tallest child in her class of 7 kids.

Nathaniel started basketball last week while I was on hospital duty, but I'll get to be there this week and he's excited to show off his new sport. He says he's not any good, but we had a long talk about giving himself time to learn the game and to practice. He's very hard on himself and gets frustrated quickly, so we're working on teaching him patience with himself and to just enjoy sports for the experience. Heaven knows he's not getting any special athletic skills from me.

I forgot to post that report card came out and my kids rocked the reports!! Rachael had nothing but Satisfactory scores down the board, which is the highest she could get. Nathaniel got A's in everything but P.E….and afer that whole basketball thing I just posted I want you to know that I gave him a hard time about that. Not because he got a B in PE, but because he got it for not taking his uniform to school. He's so smart and he's got a lot of enthusiasm for the things they're learning this year. I'm very proud of both my kids and the hard work they've done to earn their grades and thankful for the teachers we have who nurture their young minds.

I hope everyone's week is wonderful and filled with joy!

I love a salutation that my new friend Stacey puts on her emails and I'm stealing it for my post.

F.R.O.G.
Fully Relying On God
—-Anissa

So, I spend some of the downtime I have, when I should be cleaning my hurricane of a house or doing dishes or something productive, perusing website of other cancer children. Sound morbid? Nah, I find some of the funniest things on these websites.

I think cancer families have to learn to laugh or we just want to cry all the time. Fortunately for us, we're a family that laughs easily and that gets us through a lot of hard times.

YOU KNOW YOU'RE THE PARENT OF A CHILD WITH CANCER WHEN…
1. You carry a tube of EMLA (numbing lotion for needle pokes) in your purse instead a tube of lipstick
2. Kids with hair look kind of strange to you
3. You can sleep anywhere, and anything that reclines more than 15 degrees looks "comfy"
4. You can name all the equipment used on ER
5. You can diagnose the patients on ER before the Docs do
6. You hear a truck backing up and you think the IV pump is beeping

Ok, that may not seem funny to most people, but to the other cancer families who see this site, they're going to think it's a flipping riot!

With continued faith in God
—Anissa