Hope4Peyton

I was supposed to be on the road to Alabama by this time, headed north to my dearly beloved and a weekend of alone grown up time. Instead I came to the realization that I would be leaving Peyton during the throws of an increased steroid dose and after a few crying fits, realized that it was likely to get a lot worse before it got better and that’s not fair to anyone. Peter and I were both sorely disappointed not to have the adult time…and I mean that in the sense that we could watch shows with swear words and not be asked to referee the argument of the moment…we were looking forward to. The upside is that Pete was planning to come down on Sunday anyway after I left and spend the week working from home and having some time with us. So, instead, he’ll come home Friday after work and surprise the kids with his very appearance! Sort of like the Beatles walking in the front door with lots of screaming and waving of arms.

Wednesday night Nathaniel and I went to the Cure concert. As there has been some questioning of “What Cure concert?”, “Cure what?”, and “Who’s playing at the Cure concert”….I do mean THE CURE…the band…black hair, alternative rock, tall leather boots. You know you’re sadly encapsulated in the cancer world when the word Cure automatically makes people think you’re going to a fundraiser. I also found that I am so not cool anymore. For the love of joe, I wore a bright aqua shirt to the show…I was a pebble of color in a sea of black, black and more black. But the music was fabulous, we were lucky to be invited to see the concert in the hockey suite at the Forum and we got to hang with some always-fun-to-be-with friends. And as a private joke to our friends that attended: I’d like to thank #208 for all the entertainment!

Because the trip north went down the pipes, all the plans for the kids were up in the air. Our great friend David still took Nathaniel for a much anticipated sleepover that would involved nonstop video games, some anime movies, probably a gall stone inducing amount of junk food and then more video games. Peyton did go to Grandma’s for a sleepover tonight, she’s doing great but she does better when she’s got all the attention. She is even so cheeky as to admit it to Grandma that “I like coming over, when it’s just ME!” We have to be so careful that she doesn’t develop her own gravitational pull, seeing as how the world revolves around HER. This left Rachael and I free to indulge in all the fun girly stuff we’d been unable to do since school let out.

We spent the whole night at the mall, she got her nails painted and little flowers are now artfully displayed on those proud little fingers. She agonized over every shopping choice as the gift cards she held burned through her pockets. For some mysterious reason she has no problem spending our money, but it had to be THE item when it was her money. Heaven forbid there’s a murder at the mall and they do any sort of fingerprinting because I think she handled every single item in every single store. I am sort of a grab-it-and-go shopper, I usually have something very specific in mind and if I don’t find it I get out. Rachael is a BROWSER, she’ll linger over a rack for 20 minutes, and just about the moment I can feel my eyeballs start to pulse in impatience she’ll move to the next rack…to begin the torture all over again. But she was all aglow from the shopping high and the one on one time that is precious little these busy summer days. I can’t tell you how many time she just put her hand in mine and grinned great big at me, so happy to have all the attention and to not have to share me with anyone.

I have found that I am occasionally guilty of product placement in this site. Sometimes it’s the course of telling something that happened in our day and sometimes its because something THRILLED me so greatly that I feel if you don’t run out and immediately take advantage of whatever it is your life will be lesser for it. This is one of those moments.

This morning I had two appointments, one to get my hair done and the other was an ob/gyn stop….which one of my friends found hysterical.

“Do you always get your hair done before you go see the OB?”

“Hey, any time someone’s getting that close to me, I feel it’s important to look nice.”

But while my OB is a very nice person, I have found the most fantastic hair guru! I mean, seriously, he found my NATURAL color…up there in the realm of the HOLY GRAIL and JIMMY HOFFA! But I take things like the time given to get my hair done very seriously because it’s very infrequent that I take just-me time and it had better be good. This, my friends, is my gift to you…the name of the man who can do amazing things with your hair color and fix a cut that is just never-quite-right…Stephen Chappellie! Feel free to email or call for a phone number so you too can feel the joy!

And in parting, I just want you to leave this post with a smile. I love Youtube and all that it enables, and several times over the past couple of years this video has crossed my email and I laugh like it was the first time all over again. Enjoy!

The Evolution of Dance

f.r.o.G.
–Anissa

One of our favorite nurses at the clinic, Cindy, is leaving our clinic…she doesn’t love us anymore and is just throwing us to the wolves.

Ok, really, I would never call the other nurses wolves, they are fabulous! And Cindy’s really leaving to take her fantastic self to the other Pedi Hem/Onc clinic in St. Pete. Good luck, Cindy, you’ll be so missed and thank you for always being a caring friend and loving nurse.

Peyton had her spinal tap today and it went really well. I was, as always, amazed that this child allows someone to stick a needle in her chest so that they can then jab her in the back with a needle that I do know on a personal basis feels like a 2×4 wrapped in barbed wire being shoved into your nostril. Yet, besides a bit of squirming, she was a trooper. She complained more when we took off the tape that was over her numbing cream! My hero.

Her counts were really great today.

ANC was 1900 (pretty good)
WBC was 3.5 (great)
RBC was 11.5 (best it’s been in months)
Platelets were over 300K! (fabulous!)

We left with our monthly supply of chemo and a raised dose of steroids…JOY….and only 1 more spinal tap with chemo left in her protocol. She’ll still receive them post treatment, but they will just be monitoring type procedures without chemo injections. I guess that’s a bonus.

I have a hard time tonight being real positive about the day. Our friend Brooke Martin’s bone marrow results came back that she’s had a relapse of her ALL Leukemia. I’m just devastated to know that another child’s treatment has failed, that she only had 1 week out of treatment before the cancer came back, and that her family is faced with so much fear and uncertainty. Why why why?

When we were diagnosed, we were swarmed with good news about the outcome of treatment for kids with Peyton’s type of leukemia.

She has cancer…but it’s a very treatable kind with a high success rate of cure.

She has cancer cells in her spinal fluid…but we’ll do a higher risk protocol that’s shown to take care of that and with a little radiation she has as good a chance as anyone.

It will be ok, she’s going to make it.

Over the many months of treatment I’ve heard the most astonishing things come out of people’s mouths.

“That’s the GOOD cancer.”
“That’s the Cadillac of cancer.”
“But that’s not a big deal because they can cure that one, right?”
“Well, if you’re going to have cancer, that’s the diagnosis you want.”

NO…there is NO good cancer, the Cadillac of cancers is STILL cancer, it’s ALWAYS a big deal when your child has cancer, and there is no diagnosis that is wanted. I understand that people want to be encouraging during a time that’s so hard, but these kinds of statements are hurtful and you want to scream “Do you understand that my child could DIE!?? Her very existence is at risk? Please don’t act like it’s nothing.”

It’s been such a disheartening spring. So many relapses, so many fatal infections, so many weakened bodies unable to take the fight anymore….too many funerals. Even the joy of the good things…remissions, end of treatment, chemo finished, ports removed…has been dimmed by the grief and the losses. I don’t know if I’m going to say this clearly, but for me, it feels like the bad is definite and the good always has a cloud hanging overhead.

It’s unbearably difficult to see another young friend relapse, to feel that blow to the confidence that my child will make it. Lately it just feels like the “possible” becomes “inevitable”. That’s no way to face it, it is giving up in a way, but when you feel the pain and loss all around you, it’s hard not to be afraid that you’re next in line.

On Sunday, I was sitting in church, listening to the preacher talk about “Why me?” It hit so close to home, in fact, it hit so close all my windows rattled. It was the message that we have expectations of our lives and what we are supposed to have and do and when those expectations aren’t met, we feel “Why me?” Mark talked about the fact that although those of us with faith in God’s plan know the comforting verses and we are constantly reminded of the purpose and plan in action, it doesn’t always offer the comfort we wish or relieve the pain the way it should. We are left with frustration and doubt and anger in its wake. He went on to talk about our choice to continue to believe or to let the doubt take over us, and how God guides us to make the right choices and strengthens our faith through the roughest times.

I sat there and listened to this message, feeling like “Why me? Why so many of my friends? Why are these things happening to such good people and innocent children
?” And I bawled like a baby. Cried and cried and cried. Trying to be subtle about it because I didn’t want to get up and leave and miss something, but crying too hard to keep sniffling into my own hand. So, I reached into my big bag of everything and scrounged for a Kleenex. There was none.

But I did have an Always maxi-pad.

I had to rip off the little wing and use it to wipe my eyes, I refused to use the thick part. No pride….none. It was very absorbent, I’m should write them a letter of thanks.

But after I got that out of the way, I felt so much like God was talking to me, just letting me know that it was ok to feel discouraged and to be angry and resentful that His plan for my life included such an enormous ball of crap….and what feels like a constant barrage of crapballs coming my way. But at the end of the day, I’m able to reach out in prayer, know that I can vent it all out to a Lord that wants to hear it, and still feel that love and comfort knowing that it IS the plan, that it’s beyond my understanding but hopefully I’m doing whatever it is that He wants me to do. Not sure what that is exactly, but if I find out I’ll be sure to let you all know I got the memo.

I just ask that everyone keep these sweet kids and their families in prayer, blanket them with prayer and love.

Brooke Martin, Jimmy Reichert, Connor Hernandez, Lindsey Ballinger (name:LindseyRose), Justin Gaudineer, Joshua Czorapinski (name:Joshuaczorapinski), Leo Astacio, Nikki Hawkins, Mandy Willis, Presley Dickson (name: PresleyD)and all the others.

Also ask for strength and healing for all the families missing their children, learning the new normal and getting through one moment at a time.

The Kesler family, Gunn family, Gliddon family, Potterbaum family, Deal family, Lester family, Muldoon family, Ramos family, Duckworth family, Tucker family, Wirth family, Arrington family…and those are just a few of the ones in my head, blanket them all as well.

Thank you to each person who follows our site, who offers encouragement and support….we feel it, it strengthen us and gives us such a feeling that you are part of OUR purpose. We have so much love for those that comment, email, leave your message of support and who cry, laugh and love along with us….we love our “lurkers” too! Thank you.

f.r.o.G…fully relying on God
–Anissa

The kids are home and I’m glad to tell that although she pretended otherwise, Peyton was glad to see them! She gave huge hugs and kisses when we picked them up and she grinned from ear to ear all the way home. The last event before pickup was a water fight, before that was a shaving cream war and before that was one last swim in the lake…can you even imagine the level of STINK that crawled into the van? It was awful but it was great to have them home again.

I filled their bellies and then I made them take long, hot showers…after all that hard work they were ready for a nap that took most of the afternoon. We enjoyed our evening home by listening to all the tales of camp and then we went to see “Kung Fu Panda”…which is a MUST see! It was a wonderful feeling to peek into the bedrooms before I went to bed and see all my kids back where they belong.

Nathaniel got to go to Busch Gardens today with his big buddy Eddie…which I have to announce to the MANY who have asked since I posted a picture of Nathaniel’s buddy…he does have a girlfriend, ladies! I can almost hear the sad sighs. They had a blast hitting all the roller coasters and water rides in the ridiculous heat.

I have to share a very special/sad moment I had over the weekend…and, Natalie, you can stop apologizing any time now….at Mandy’s fundraiser yard sale. I had taken over a ton of boxes of stuff to sell and included in that mass dumpage was a ladybug Halloween costume. I had bought it back in October for Hannah Deal, because she was a great lover of ladybugs, but she passed before I had a chance to give it to her and she never wore the one I bought her because someone else had gotten her the same one. I’ve had that costume sitting in the bag for a long time, unable to part with it, but unable to give it to Peyton because in my heart it was still HANNAH’s costume. I decided it was time to let it go, let someone enjoy it that would never know that it was meant for a beautiful girl lost too young.

When we got to the yard sale on Saturday, Natalie whisked Peyton away with the promise of something wonderful. When Peyton came out with the bag full of ladybug costume, with an enormous smile on her face, I couldn’t deny that Peyton was meant to have that costume. I won’t lie, it hurt to see it again, to know that the little one who was supposed to twirl and giggle in it never had the chance. But my daughter’s grin was all it took to know that she was supposed to have that outfit now. It was as if I couldn’t give it to her, even though I knew she’d love it, but because it came from someone else, it was ok.

She wore that ladybug costume to church this morning, all frilly red skirt and ruffled sleeves. Sitting in the van at the church, Rachael said, “Hey, look! A ladybug!” and there is was, just crawling there. I never see ladybugs but today I saw one and there was one sitting in her carseat behind me. I just felt like Hannah was there for a second, seeing Peyton in that adorable costume, loving it the way she would have. It was perfect.

We are gearing up for yet another busy week. Tomorrow is really our only day with any kind of lull in it. Tuesday we have a clinic appointment with a spinal tap and chemo, Wednesday Nathaniel and I are going on a date to the Cure concert and Thursday is all prep for my solo trip to Alabama. Yes, you heard that right…I am taking a lonely trip to Alabama to be with my husband and to take him a couch. Because they don’t have couches in Alabama, bet you didn’t know that, did you? It’s an ENORMOUS step for me, in leaving all my kids behind for more days than I have ever since the beginning of time! It should be interesting to see how far I get before I start feeling panicky.

Oh, and because this is the type of parent I am!

When we went to Daytona we had to truck the dog over there with us. I filled a Tupperware cereal container with dog food for the trip. One of the kids put it on the kitchen counter when helping to unload the van upon our return. It’s been sitting there for a while, just waiting for me to take it outside and put it in the dog food container. I finally found the RIGHT motivation when I came out this morning to find Peyton pouring herself a nice healthy bowl of IAMS Fish and Chicken Mix for breakfast!

“DON’T EAT THAT!!!”

So you can see that my inherently evil side is sometimes overwhelmed by my love for my children. If I was really that bad, I would have at least let her take one bite so that I could get a picture of her expression.

Aren’t you proud of me?

f.r.o.G….fully relying on God
-Anissa

Last week while we were at the beach, I took great care to sunscreen the kids frequently and carefully. I, however, failed to do so with myself. I came home crispy like Waffle House bacon!

Yesterday I started the peeling process, which grossed Peyton out to no end. I don’t judge her….when she was bald, when she was swollen, when SHE was peeling sheets of skin off her head from radiation…I was loving and gentle and comforting. She mocks me. She pokes me. She says things like, “You’re GROSS, mama!” while wrinkling her nose in disgust.

Yet, nothing quite matches the way I woke up this morning.

Screeching. No, I would say it was an actual scream. A long continual scream, broken only for gasps of terrified breath.

I jerked up and went into full battle mode…because no one would make that particular noise unless the hounds of hell themselves were about to attack. Perhaps we’d been attacked by aliens…a large chunk of ceiling had broken off and was crushing her to a sure death…it had to be THAT bad for those sounds to be coming out of her.

“What!!!!!!”

“Your. Yucky. Skin. Is. On. Me! ON ME! Get it off off off off off off! I. Hate. Your. Yucky. Skin!”

A little piece of my peeling skin had apparently floated over and landed on her arm in the night. Did you know that dead skin has the same effect as battery acid? It will literally eat through YOUR skin and muscle, straight to the bone! Right? Because that’s the ONLY possible cause for screaming like a banshee because a tiny piece lands on you.

I picked it off with a roll of my eyes and she leaned back on the pillow, breathing heavily, obviously having survived yet another horrifically tragic turn in the tale of her life.

“Get over it, Peyton, you’re going to make it.”

“I don’t know, that was REALLY yucky. Can you keep your skin away from me please?”

“I’ll see what I can do.”

“Thank you, mommy.”

f.r.o.G.
-Anissa

Dropping the kids off at camp was an emotional moment for me….my kids, getting so grown up, getting more independent and able to be on their own away from me for days at a time…not so much emotional for Peyton, who’s response to the whole event was, “I said goodbye, can we leave now?” For her, it’s more about the chance to prove that she’d make an EXCELLENT only child…

“Mommy, it’s so quiet in the van without the kids!”

“I can sleep with you now, because the kids are at camp, right?” Forget about the dad who’s side of the bed it REALLY is, but Rachael and Peyton fight over that empty spot like two wildcats.

“I like it when (and get THIS!) THOSE kids are at camp.”

THOSE kids, like they’re some crazy homeless folks we picked up from the nearest shelter.

I know you like all the attention, Peyton, but your brother and sister WILL be coming home soon, so get used to it!

Rachael’s cabin was quiet when we dropped her off. We made up her bunk and got all her stuff organized and I made sure she knew where everything was. She had counselors that she knew from last year and from church, so she was comfy right from the get go. As the girls started to filter in with their matching bed sets and color-coordinated luggage, the pitch of the giggles and screeches reached a level that I’m pretty sure I’ll have to take the dog with me on Saturday because she’ll be the only one who’ll be able to hear them!

Nathaniel’s cabin sounded like they were rehearsing “Lord of the Flies”, I fully expect them to be naked, covered in mud with a big boars head on a stick by Saturday morning. Luggage? Sheets? I think not! I could have packed him a stick and some beef jerky and he would have been good to go! It was nonstop chaos from the moment I walked in to the moment I realized he didn’t pack his toothbrush and left. Really? Did I think that he was actually going to brush his teeth with any regularity anyway? I made him promise to put some toothpaste in his mouth at some point in the next 4 days. They were wrestling, planning their big adventures for the rest of the weekend and I could already see the counselors’ eyes starting to roll back in their heads.

Peyton and I did have a really nice day today. We went and got our nails done, we went out for lunch, we took a nice long nap…and I wonder why she wants to be an only child. For our evening plans, we headed to the Children’s Cancer Center for family group night where she got to dress up in princess clothes, play with all her best buddies and be doted on by the staff and volunteers and her favorite Bertochs. In a nutshell, her day was pretty much Utopia.

Updates on the rest of the world, because today I was informed that I was supposed to know EVERYTHING and pretend to be the TMZ of the cancer world.

Jimmy Reichert is doing well after his second surgery in two days. He remains in the ICU at Tampa General, where they had to move him from St. Joe’s to have the surgeries to remove the fungal infection in his lungs. Hopefully he’ll get to move into transplant quickly and get cancer far far behind him.

Connor Hernandez is doing not so well. He had surgeries to have his port removed and to remove a large chunk of his left arm because of an incredibly awful infection. They had to go to the bone to remove what they hope is all of the infection and he has now lost the use of that arm. His bowels and bladder are non-functional and he has a fungal infection in his blood. He’s suffering. However, his brothers were so sweet tonight when they told me “Connor missed us, he laughed when we went in to see him.” It’s a blessing to know that despite it all, he is still able to find joy and love when his family and friends come to visit. He’s fighting as hard as his little body can.

There are so many that require prayer: Justen Jones, Mandy Willis, Nikki Hawkins, Brooke Martin, Kate (Sugarkate), Joshua Czorapinski (name: joshuaczorapinski)…the list continues to grow and the reasons are far and varied. Although prayers through treatment are precious gifts, please never forget that the battle goes on long after the chemo stops. The lasting effects for some of these children are devastating in their own right. We talked long and hard at group tonight about how wrong it is that even after the cancer is “gone”, we are still never back to normal. If it’s not the worry about relapse, it’s the fight to regain what was lost during treatment…cognitive, social, physical strength and ability…and for some it will always be less than what it was before. Cancer may not win the war, but it sure feels like it takes some of the battles. Please pray for the kids, all of them, no matter what their needs might be…just blanket prayer them all. God knows their names and their needs, you just be the one more prayer to lift them to Him.

Sherry and Peyton

My wonderful friend Sherry Tucker, mother of Zach Tucker and founder of the Giving Hope Through Faith foundation is now the author of the upcoming book “Unfinished Love – Walking by Faith Through Pediatric Cancer”. I can’t wait to read this book and let her enormous faith inspire me, because she has never failed to be a strong friend, a shoulder to cry upon and a warrior of hope and faith. Feel free to pre-order this book on Amazon.com, I know it will have a tremendous impact on your life, there is no way it can’t.

Rachael, Peyton and Mandy

There is a fundraiser in Brandon this weekend! Mandy Willis is a sweet Brandon girl who is battling a brain cancer called an Optic Gioma and secondary tumors in extraordinarily danger spots. The Willis family has become really special to us, the way we found each other is a real God thing. Delaney Potterbaum had just passed and I had a post about her on the website, Natalie (mom) was googling Optic Glioma…I know in my heart that Delaney reached out and brought us together that night. An email, a phone call and now we have these precious new friends.

A group of Natalie’s co-workers are holding a yard sale fundraiser this weekend. It will run from 8-12 on this Saturday at 1210 Thomas Jacobs Place in Brandon. Please come out if you can, please consider if you have sellable stuff you’d like to donate to the sale…it can be dropped off tomorrow…please think about donating directly to Mandy’s fund via the Children’s Cancer Center website. You can donate “In honor of” and make sure to put “Mandy WIllis” in the notes section when you make your TAX DEDUCTIBLE donation!

Most of you are blessed to never know the financial strains of cancer treatment, having to lose an income so you can care for a desperately sick child 100% of the time, how much Carabbas you can’t afford to buy, but do anyways because it’s the only thing your child can stomach. Every donation makes an impact on that, no matter how small or big, because in the grand scheme of things, the bigger gift you give is the knowledge that someone cares enough to give.

Our preacher made an awesome point when talking about our missions from God. He said, “Some are meant to go, some are meant to give, and some are meant to pray.” So, please do one!

f.r.o.G…fully relying on God
–Anissa