Hope4Peyton

Rachael is a rock star! She had a tremendous afternoon at the Iron Chef Tampa Style fundraiser to benefit All Children’s Hospital. There was a group of over 500 people there to eat, donate and help fund the new hospital. Rachael’s painting was front and center with 3 others done by kids from our clinic. I’m not entirely sure if our clinic was the only one that participated or if we just got really lucky, but all 4 live auction paintings were done by children from the Tampa clinic. There were about 20 children’s paintings in a silent action, we saw beautiful artwork by a couple of our friends, Nikki Hawkins and Allie Blain.

The room was huge, set up with restaurant stations lining the walls….I think 20-ish restaurants. Each setup had to use lemon in their food items, so we had lemon fish, lemon chicken, lemon shrimp, lemon fritters, lemon steak, lemon desserts out the whahooo…..I loved it, Rachael wandered around with a lost look on her face trying to figure out where the Chik-Fil-A station was. It was all pretty high brow food and all she ate was desserts, poor thing.

But during the food fest they had all the kids come up with their families. It was us, Zack Rozmeski and his parents Rob and Tina and Sesly Evers and her parents Kat and Brad. Kyleen Slater, who used to be our child life specialist at the clinic but is now an employee of the CCC, introduced the kids and told a little bio on each one. Zack is a maniac and I am just better and happier whenever I am around him. He’s such a dynamic boy, I wish we could all get a little dose of Zack with our morning coffee because it would make the day so much better. When Kyleen asked him if he wanted to say anything to the crowd he just raised his painting up and shouted, “I want to share my art!” Rachael had dictated a speech that she was going to give. Her painting was entitled “How my sister’s cancer makes me feel” and her speech was just priceless. I almost bawled like a baby listening to her talk about how she is sad because Peyton has to go to clinic and how she prays for all the sick kids. She’s such a lovey, no one would know that this is the child that holds stuff juuuuust far enough away from Peyton’s hands as to induce a seizure…just for kicks and giggles.

When they got down to bidding I was absolutely flabbergasted to watch Rachael’s painting sell for 800$!!! Holy cow! Why is this kid not working? I think perhaps she should get a job, rake in some cash. She felt so good and many people took the time to tell her what a good job she did, how pretty her painting, what a great speech she gave. I could just see her glowing with pride. It was just what she needed.

You might notice the picture is slightly off the colors I had said it was…give me a break, I got a lot going on.

This is the awesome guy who bid on and won Rachael’s painting. He was so tremendously kind and asked to have Rachael’s speech as well. I don’t know what he’s gong to do with it, but his family was very touched by Rachael’s words.

Peter had to leave to head back to Alabama directly from the fundraiser. Goodbyes were said in the lobby and Rachael was so high from her big day that she didn’t even cry. It was sad to see him leave again, but we had a pretty good week together and it was just AWESOME to have him in the house with us.

Peyton….well….let’s just say that she finally stopped crying at around 10 PM and she actually smiled at me around 11. Her face is swollen from crying, her eyes look like she’s taken a gang beating. She did go to sleep at around 12:30. She cried and screamed for the better part of ALL EVENING long, her stomach hurt, her butt hurt from the constipation/diarrhea issues and just an overall I-feel-like-crap feeling. She never got a fever, so that’s a plus.

I had a friend stop by and pick up the kids for school this morning so that Peyton could stay asleep. She needs the rest more than they need me to get them to school tardy. They were so sweet this morning, wanting to go in and kiss her before they left. To which my response was “Set foot in that room and I’ll take your head off with a backback”. They made the wise choice to kiss her when they get home from school. Life is all about making good decisions.

I really just don’t know what’s wrong with her. I’m laying in bed with her last night…her face resembles the kid from the movie “Mask” because it’s so swollen and red, her voice sounds like James Earl Jones because she’s so hoarse from crying and wailing…and we’re just talking, the first time she’s really talked to me in a couple of days. She told me “When I wake up, my legs hurt, that’s why I get in bed with you”. I don’t believe that’s the reason she crawls in bed with me, I think she does it because she’s hoping to break me down with a lack of sleep and then she can rule the world. But it broke my heart that this pain and discomfort is such a part of her normal routine that it doesn’t even bother her anymore.

She’s sleeping soundly now. I’m heading back to bed because I after she went to sleep I tried to snooze as well but spent the night waking up just in case her body temp chose to teeter into feverish. There is something so wrong with me. Which it didn’t, of course, and now I am sleep-deprived AND slightly deaf from the screaming. If she wakes up feeling much improved we’ll hold off on calling the clinic and just go in on Tuesday for our appointment, if she wakes up the same as she has been lately I’ll call in the National Guard and alert FEMA.

Pray for door #1!

f.r.o.G…fully relying on God
–Anissa

My posts have been few and far between this week, we’ve been so extraordinarily busy and we’ve also had an awesome time just being a family with Peter home, but we’ve also been dealing with some not so great problems.

First, let me tell you that with a few days of driving the van I have figured out a couple of things….I am completely thrilled with the van, my kids are button-mashing fools, and I will soon have a permanent bruise on my forehead because of the fact that the van is MUCH lower than the truck and I can’t just stick my head in without ducking. At least once a day, sometimes several, I will reach back in for something and nearly knock myself unconscious.

Friday night was our greater Brandon area Relay for Life. With all the craziness in the past months I was totally unable to commit to a team, but when they asked if Peyton could be their honored survivor we were happy to have a part. Last night I spoke at the opening ceremony and we participated in the survivor lap. It’s special to do it here at our local high school where we share the night with friends and we’re able to have an impact in our community. As it is often easy for me to get completely caught up in our mission to fund pediatric cancer, I am reminded that cancer has touched many adult loved ones, my grandmother and my mother, and without groups like the ACS working to raise awareness and raise research dollars, my mother might not be a survivor today.

Today we got a chance to really celebrate life. Our dear friends, the Lee family, have watched Samantha go through a long and tremendously hard cancer battle. She had a brain bleed right after diagnosis and she more than most suffered greatly from side effects of chemo and it was a daily uphill battle for her. She is such a bright young lady, she has this huge heart for helping and loving others and I just adore her. Her mother Joanne is a fantastic friend and an inspiring advocate, just a month ago she shaved her head in honor of Sam, proudly wearing that bald head to raise awareness of what her daughter has been through. Today, Sam’s family and friends gathered together to rejoice in her completion of chemo treatment. Done! Finished! Threw away the pills and moving forward into a cancer free life.

While there has been an overwhelming amount of grief and devastation in the past few months, there are also reasons to celebrate. It is this emotional teeter-totter. The loss of a friend, the uncertainty of a relapse…the joy of the end of chemo, a port being removed. It’s almost exhausting in it’s very high highs and very low lows.

Part of my lack of posting is that Peyton is still having a lot of issues these days. Her mouth sores aren’t going away, they are getting worse. There are now huge sores on her lips, the blisters unable to heal. They seem to get better then they get worse, the binky issue is driving me insane because I know that’s part of the reason she’s not healing. We are working hard to keep the pacifiers out of her mouth, and she understands that it’s making it worse, but she feels so bad right now that she just doesn’t care.

She’s been having some really rocking constipation issues. She goes from completely clogged up to diarrhea and her little booty is so sore she cries all the time. She’s on stool softeners and I’ve been forcing liquids down her, but she keeps battling it. I’ve had to give her suppositories to get things moving along and she lays on the floor and screams while trying to go. Today she even bled a little because of pushing so hard. It’s excruciating for her and just miserable to watch. We have a really good idea what she’ll be like in labor and it ain’t pretty.

She just overall isn’t feeling well. She’s getting a bug or something, she’s got a cough and is congested with a runny nose….no Little Tales this week, but I’m not going to tell her THAT! Her stomach hurts all the time, a mix between so many bowel issues and a “I think I’m going to throw-up” issues. We’re still using a more than usual amount of Zofran.

There are still complaints that she hurts, but they are less and she’s not waking up crying anymore. I don’t even know if that’s good or bad anymore, it may just be that she’s getting used to it. She’s definitely not sleeping well, she looks pale and tired and that scares me.

It’s this terrible feeling for me, not to even try to explain how hard this all is on her. It seems like it’s always one pain or boo boo, she’s in a pretty constant state of uncomfortable about something. She hasn’t suffered like this in a long time, way back into the worst parts of heavy chemo treatment. She complains that her head aches, she’s tired all the time, she looks really rough. I really can’t stand the anxiety this all brings on, I wish there was a clear answer as to what is wrong with her right now. I truly am just hoping that it is all just a cumulative effect of many months of chemotherapy on her little body. It’s a totally sucky answer, but it’s the one I’d rather hear. We go into clinic on Tuesday and hopefully we’ll make it to that one without having to go to the hospital.

In all honesty, I’m expecting her to get a fever or to just feel so terrible that I have the clinic before the weekend is up. I’m just hoping that she’ll be able to hold off until tomorrow afternoon.

Wow, you’re thinking, that’s just terribly insensitive of you to hope that your child’s illness works around your busy schedule. You’re thinking it, aren’t you?

Tomorrow is a big day for Rachael. And she NEEDS this. All Children’s Hospital has a big Iron Chef-style competition that raises funds for the hospital and one of the things they do is pick a few paintings done by patients and their siblings. I believe it’s 4 kids, but not positive on that. My 3 kids painted canvases…Nathaniel’s was full of flowers and sunshine and strange bugs that live only in his imgination…Peyton’s was a solid sheet of black paint with 2 purple stick people, strange and not one of her best works…Rachael’s sort of stumped me because it was this grayish sky, brownish ground and one sad looking flower. Rachael is an excellent artist for her age, and her pictures are usually bright and cheerful, but this one was really pitiful looking. I wish I’d taken a picture of it to share with you. I handed them in to be added with all the other paintings and really figured they wouldn’t get chosen. When Kyleen asked for a bio of Rachael with an explanation of her picture, I asked Rachael what her picture was all about.

“This is what I feel like when you and Peyton have to go to the hospital.”

The sad sky, the one lonely, solitary, seriously depressed little flower. Awwwwwww

Of course they picked her painting and tomorrow we get to take her to the live auction of her painting! Peyton gets a lot of attention and her picture is always on something, or in something or she’s on tv…Nathaniel’s gotten his 15 minutes of fame lately getting to be on tv….this is Rachael’s day to shine, she gets to be in the spotlight and get up in front of a lot of people and tell all about herself. She gets to have the attention focused on her and her accomplishment.

Now do you understand why I really don’t want Peyton getting sick to get in the way of this moment for her? She needs this and I need her to have it. She needs to know that although Peyton’s cancer issues are a big part of our lives, it doesn’t make her any more important to us.

So, please pray for Peyton to start feeling better, for improvements all around for our baby girl. Please pray that Rachael has an awesome time and that her day is just filled with the knowledge that she is special and appreciated for the amazing girl she is. Pray for Nathaniel because we have about 23 days of school left and his brain is slowly creeping away to summer vacation already!

f.r.o.G…fully relying on God
–Anissa

Peter asked me to post this little story. It falls under that TMI heading, but I truly think that you’ll enjoy it because it’s one of those events that could really only happen to me. Please don’t feel required to read this next part unless you truly enjoy an embarrassing story at someone else’s expense.

When you lose and gain weight you often have clothes that you keep from both ends of that spectrum. Most people have those clothes you just don’t quite fit into anymore, or not in a way that is acceptable to be seen in public…and some have their comfy clothes, things that are way too big and perhaps just a great reminder of where your body has been.

I have both in my closet and drawers.

Last Sunday I headed to church with no real concern about the before-mentioned clothing issue. But quickly found out there are certain pieces of clothing that you absolutely DO NOT KEEP when they are too big for you.

After dropping off the kids to the children’s church, I started walking across this long walkway to the adult church. That was the moment I realized that I had on a pair of underwear that was too loose. How did this miraculous discovery come about? Because the skirt I was wearing was slowly working the underwear down my hips. About halfway between buildings…of COURSE it would be halfway between buildings, don’t you know…I realized that the underwear vs skirt conflict was quickly being won by the skirt and my underwear was about to fall around my ankles. I sped up thinking that I would get to the bathroom quicker.

Yeah, not so much with the helping.

The skirt was victorious.

I had to clamp my hand to the side of the skirt in an attempt to keep the underwear from falling completely to the ground and having to shuffle into the sanctuary with my new lacy ankle bracelet. Once in the safety of the bathroom I had to make a miserable decision to throw away my underwear and attend church sans undergarment.

I did this because:

A. I didn’t want to go through the experience of having my skirt launch a full-scale attack against them again
B. I figure God has a pretty darn good sense of humor to let this happen at church anyway and would only get another chuckle from having my underwear fall out of my purse

Really. Yes, at CHURCH! Commando at church. Why me?

I can’t begin to explain how much my heart hurt for the Gliddons on Tuesday. Some of us met at the Center to ride to the service together and that was hugely helpful, it was so much easier to hold out on the sorrow for a few more minutes in having that time to talk and laugh. Driving up to the church I could literally feel the heaviness starting to fill my chest. So many people were waiting to go in, just grouped up, gathering the strength they would need to perform this last ceremony to honor Mathew. I don’t think it helped. You can mentally prepare yourself, you can talk yourself up to what is about to happen, but it doesn’t help the moment you walk in and see that little red casket and know that sweet boy is gone.

I had packed half a dozen packets of Kleenex in my purse, there never seems to be enough. That was all the “prepared” I could muster. The day had really started emotionally because I pulled out my 1 red dress and when I put it on, I realized that I had washed it without taking off the ribbon from Delaney’s service. There it was, still pinned to my dress, all shriveled and wrinkled from going through the laundry. I was just flushed with how much I miss seeing her smiles, hearing her voice, waiting to see what crazy thing is going to come out of her mouth. That was quickly followed by the sadness that filled me when I realized I have a funeral dress. I have that dress that I’ve worn to 3 now. I don’t know if I mean to wear it, but when red is the favorite color of the child, that’s my only option.

Mathew, wrapped up in his favorite things, surrounded by the trains and cars and pictures that brought him so much happiness. It hurt to see him lying there so silently, wanting him to just wake up and it all to not have happened…for him, Karen, Mat, Andrew. Holding Karen, she whispered words in my ear that gave me strength and peace in my heart, and I could not have loved her more than at that moment. Mat puts more emotion in a single hug than anyone I have ever had the pleasure to hug, and I tried to send some of that back to him. I got to share an m&m with Andrew, he made me smile and his complete innocence of the turmoil around him was beautiful.

The service was beautiful and peaceful. I’ve never been to a Catholic mass, it is a reverent and serene ceremony, it filled me with a peace in my heart. I don’t think it ever matter who’s church or who’s religion you’re a part of, God just fills you with comfort and peace when you pray in his name. When I say peaceful, don’t think I wasn’t a snotty, boo-hooing mess, because I was all that and more. The moment when Mat stood up with Karen and he spoke so eloquently about Mathew’s life and impact, there was laughter and tears, but so much love shared it was impossible to not see that Mathew was blessed to love and be loved by an amazing family.

Afterwards, there was food and time to just talk and give each other comfort at the CCC. It was so the perfect place to celebrate Mathew, in a place where Mathew had so much fun, where all of the Gliddons gave so much of themselves to others. I feel so very gifted to be a friend of the Gliddons, to have been blessed with Mathew as a part of my life, honored to have been a part of this precious day.

I cannot tell you how much our lives have been changed for the better with the friendships and loving relationships we’ve built through the Center.

Today I headed to an organizational meeting for the 2nd Annual Cure Kids Cancer Challenge for the Pediatric Cancer Foundation. We’re gearing up to really get grinding on the upcoming Childhood Cancer Awareness month in September. This event last year was fantastic, it was awesome to be a part of and although there is so much to be planned and set in motion, I’m excited and even more dedicate to this cause. Perhaps because I’ve lost 3 children who so touched my heart in the months since last September, because dear friends have suffered relapse and we are seeing the failures of our cancer treatments, but I am so driven and passionate that we CAN do better for our kids. If money is all that stands between my child and a 100% cure…then money will be raised. You’ll hear lots about this event as it becomes an all-consuming obsession the closer it gets to September.

The truck issues are NO MORE!! I’m excited to announce that the Mayhews are proud owners of a mini-van. We picked something great, the kids are going to be insane about it and forget about getting 4 miles to the gallon in our Suburban, we are going to be rocking the gas tank now! It happened in such a completely unexpected and truly phenomenal way. Shannon H-O….ok, looking at that, it’s pretty funny….that would be Shannon Hannon-Oliviero….from the CCC was able to hook us up with Bill Heard Chevy. They are corporate sponsors of the Mike Alstott weekend and remembered Peyton from the softball game this past weekend. SWEET! Shannon called, gave us the big hookup with the dealership and we were able to get a great deal on our new van. If you ever need a vehicle, Fredrick Tellis is just an all-around great guy, he was patient and really went above and beyond to help us at crunch time. We did come in with the CCC seal of better-treat-us-good and they did. Thank you so much to the dealership, Fredrick Tellis, Jim, Derek, and especially to Shannon for making sure to help another family in need. They all rock! Whoooo hoooo

We got a new van! We don’t have to drive the crap-mobile anymore! I never thought I’d be happy to be driving a mini-van, but I LOVE it. What can I say, I can fight the soccer mom image all I want, but I am what I am…that would be a van-driving, kid-toting, uber mom.

f.r.o.G…fully relying on God
—Anissa

I don’t know that I would say that things are all better, but they have leveled out for the kids.

Nathaniel seemed to really take our talk to heart. My answers weren’t perfect but thankfully he trusts me to answer the best I can and it comforted his hurting heart.

Saturday I had to take the truck in…YET again…only to find out it was going to take work to keep it functional and on the road…AGAIN….and Peter and I finally came to the decision to replace it with a new vehicle. Peter and I have gone around and around with this issue and have beaten it into a bloody, messy pulp. In fact, it became such an issue that Peter is driving in from Alabama so that he can help with the picking and purchasing of said vehicle. It’ll be nice to have him home for the rest of the week.

This past Saturday we got to spend some time at the Mike Alstott celebrity softball game that benefits the Children’s Cancer Center. Because of the Oprah Big Give, ABCAction news was out there to catch the presentation of the 10,000$ donation to the Center and our friend Zack got to accept the check. Zack was kind enough to point out Peyton during his interview and then proceeded to drag the cameraman and the interviewer up to our seats. It’s a good thing that I always have something good to say about the Center, that’s one thing that I can never say enough wonderful things about. However, the moment that just broke my heart was the clip of Nathaniel. He told them that he was scared because some of the kids with cancer had died…that really says it all.

ABC Action News Interview click on the link that says “Oprah’s Big Give benefits Bay area Children’s Cancer Center”

We only got to stay for about a third of the game, Peyton went into a steroid fit and really wasn’t safe for the general public. It was hot, it was loud, it was boring, it was too long, waaa, waaa, waaa. We left and she proceeded to cry the entire hour long ride home from Clearwater to Brandon…frankly, if I’d known she was going to bawl anyway, I might have just made her suck it up and stay. Nathaniel was highly ticked that he missed the chance to go out on the field and take a swing with the players, he didn’t get to get his football autographed, all he got was to be on TV and hang out with Hooters girls…poor kid. I can’t wait to show him the interview and let him see that he actually got to TALK this time!

Today was the start of the work on our house. Will, our contractor, came out and started stripping off the most hideous wallpaper in our kitchen. It was the wallpaper that we hated on sight, but knew that it could be replaced….7 years later!….and we’re finally getting rid of it. With the room a mess, the walls stripped bare and ICK from wallpaper glue, it still looks better without that wallpaper. I’m excited to see what happens over the next few days as paint goes up and new doors go in.

This afternoon I picked the kids up from school and headed to the CCC for the ribbon-making. A strand of gold ribbon to represent childhood cancer, a strip of red ribbon with black dots to represent Mathew’s favorite color and his favorite bug, the ladybug. Every person at the funeral tomorrow will wear one of these ribbons to honor Mathew. It was sad, but also a way for us to get together and just talk and share all that we’re feeling. I had the great pleasure to meet Mat’s sister Patti and her daughter Holli, it really truly stinks that it takes such an event to finally get to meet, but they were wonderful to finally get to meet her. We talked and laughed as we hot glued ourselves. I really only made 4 ribbons, I’ve expressed before how awful I am with a glue gun.

I really want to thank every friend who continues to pray for us, for the Gliddons and just lifts each and every family in prayer. The support and encouragement has really been amazing and I can’t tell you how much it means to us. I’ve gotten lots of emails and there have been comments left by people we’ve never heard from before, offering prayers and words of comfort. In a time that feels so dark God shines a bright light on us through all of you.

Tomorrow will be full of tears and sadness as we support another friend who is saying goodbye to their beloved child. In a way, our special and tight bond with the other families is such a huge blessing. I can’t imagine what our lives would be like without the strength of understanding and friendship we share. On the other hand, because we have so much love for each other, we hurt for each other so tremendously and every loss and set back is so personal. Maybe it would have been easier to be disconnected and not suffer through these hurts with them, but I wouldn’t give them up for the world. It makes me so much more grateful for every day we’re blessed to have, it makes my children so much more precious. I pray that each of you who have never gone through this cancer battle with your child remembers that life is a treasure and that you should never take a moment for granted.

f.r.o.G…fully relying on God
–Anissa

p.s….for those of you who are so “concerned” and like to rub salt in that wound, NO I have not found the missing chapstick. Also, you’ll be happy to know that in the time that I spent trying to figure out how a softball got in my freezer, I failed to actually remove the softball FROM the freezer. Yes, its still there.

Thank you to the many who shared their stories of mild-early-onset CRAZY. The mom who packed the home phone in her son’s overnight bag, the garlic that got put into the silverware drawer, trips to the ATM only to find that there is no ATM card…it’s wonderful to know that in my mind lapses, I am joined by a large group of equally forgetful and slightly off-balance moms. It’s nice to know I’m not alone.

I cannot fail to mention my wonderful friend Tina….Tina who let me know today (and should have totally known that this would end up on our blog) that she just found out that the CCC had a women’s bathroom! Right around the corner from the men’s bathroom that she’s been using for almost 8 months now….the one with the big MEN sign on the door! Oh, I love my crazy friends.