Hope4Peyton

My tips for how to have a successful speech:

1. Stay up ALL night long obsessing about whether or not you know your speech well enough.
2. Wear a dress with a floor length skirt so that you can also stress about whether or not you’re going to trip on your way up to the podium.
3. And most important, make sure you eat a nice healthy dose of Mexican food so that you can mask your stomach full of butterflies with the churning of Enchilada platter #4.

The [url=http://www.fastercure.org]Breakfast of Hope[/url] was amazing. It was one of those days that you just know you’ll remember forever. I was so nervous, I was a sweaty-palmed, twitching mess. I felt great about getting up there to represent parents of cancer kids, but wasn’t sure if I’d have to run and throw up first.

The room was huge, around 500 people. It was bigger than I’d anticipated and that didn’t help the nerves.

But once it got started, I calmed down. I was able to just focus on what I had planned to say and I was happy that with each moment I was nearer to being done. The first speaker was Cindy Gruden, wife of coach Jon Gruden of the Bucs and the event Community Co-Chair. One of the founders, Melissa Helms, got up to speak after Cindy. She spoke eloquently about the need for research, the progress being made in the clinical trials and projects currently underway and spoke of her personal experience as a mother with a child battling cancer.

Then I was on.

I got through my speech without any tears, which thoroughly amazed me because I was on the brink the entire time. I managed to keep my “ummms” and “uhhh” to a minimum. I had printed off my speech on an enormous font size so that I’d be able to read it easily, which was great because even with 20 words a page, I would lose my place. I kept thinking of the friends that inspired my speech, the experiences that shaped the words that I shared and the children for whom I was speaking. I only had to stop once to pull it back together, so I was pretty proud of that.

I also made it on and off stage twice without tripping and landing underwear side up on the floor. Yeah me!

After I spoke, Catherine Creek gave a harrowing speech about the tremendous struggle her daughter Soraya went through with her cancer. Not only fighting a cancer with few treatment options, but developing a secondary cancer on her face that went undiagnosed for months. She shared Soraya’s strength of heart, even as her body failed her, and told of her continual grief in her loss. She gave a compelling speech that brought the reality that so many of these children don’t win their battles and then we are left behind to pick up the pieces and move forward in their honor to work harder for research.

Dana Bertoch got up and blew the room away with her speech. There is nothing like looking at a vibrant, beautiful 20 year old and hearing her say “I am a cancer survivor”. I know she touched a lot of hearts. She shared what her treatment was like, she gave the stories of special friends that she went through treatment with…only she came through a survivor and many of her friends are in heaven. She went on to tell of her passion for funding research so that the future of children with cancer can be one of effective, safe treatments and cures. She said a line I will never forget “I will never regret being called to fight cancer”. She is amazing our Dana.

Dana’s dad Dan got up to do the official “ask” and he was so wonderful in his efforts, he was gracious but let these people know that these are not some random children we are talking about. These could be anyone’s children, they are certainly ours, we pray they are never yours. He had all the families that had been touched by cancer join him on stage and we were an emotional bunch. MIND YOU, not a box of Kleenex to be found ANYWHERE in the room!

This was a highlight of my morning. Cody Bertoch got up and stood with his family as his father made his speech and when the families joined them, Peyton took up the spot right next to him. Poor Cody is trying to be dignified and solemn, but there’s Peyton, dancing on stage and twirling and cozying up to him to get his attention and finally she just reaches up and grabs his hand and holds it in her little one. She turns to me and whispers, “I’m going to marry Cody.” I hope so!

Jon Gruden got up to introduce a young man named Harris Armstrong. Harris is battling a particularly aggressive form of brain tumor and his outlook is not a bright one. His chance at survival is so very slim. But when his community rallied to have a golf tournament for him, he chose instead to share that with all the kids battling cancer and made the Pediatric Cancer Foundation the recipient of the proceeds from that tournament. It was such an honor to meet his extraordinary young man who is working so hard to make a difference in the world when his time is so precious.

It was just a day of tears, of hope, of reaching out to those who were unknowing of the lives we live and trying to make them understand.

I will be getting a dvd of the breakfast speeches and I will put them up for you to view as soon as I have it available. But I thought that I would share with you the written form of my speech.

I first gave a brief introduction of myself and Peyton and her cancer. I talked about why I was invited to speak and then this is the rest of it:

There are pivotal moments in our lives when certain words are redefined and changed forever.

Please help us give them the opportunity to continue to love life.

Whhheew!

This is the video I put together for this special day.

Peyton had the wonderful chance to meet John Snow, father of Britney Snow. Britney Snow is an actress and my girls are her biggest fans. She plays the character of Amber in the movie “Hairspray” (what else!) and she is a local Tampa girl. Her family lives down the street from the Bertochs and they have been sharing what huge fans my daughters are. So, he came today to listen to the speeches and to meet Peyton. We are excited that Miss Snow is going to be in town in the very near future for a film festival and she wants to meet the girls!!! I am so excited for them, this is going to be the highlight of their year. I’m fully planning to get a video of the girls singing and dancing to the Hairspray movie so that you all can enjoy the Mayhew Music Hour.

Thank you all for your prayers and encouragement on my ability to give the speech. It was just a small part of a day that will change lives and I’m so glad it’s over, but I’m so glad that I got the chance to be a part of it.

f.r.o.G…fully relying on God
–Anissa

ps. for you local folks, catch a segment on the BOH on WFLA Channel 8 on the 8th between 5:30AM and 7:00AM.

Peyton charming the pants off Jon Gruden

Peyton and our special friend [url=http://www.caringbridge.org/visit/samanthalee]Sam Lee[/url]

I may never be able to use the phrase “crappy day” ever again. In fact, I think that it’s possible that I’ve NEVER had a day as crappy as Tuesday started out.

At 5 AM I was awakened by an extremely put out Rachael. “Peyton pooped on the floor by my bed!”

Really? You think so? I looked over and there’s Peyton, snuggly and cuddly in bed with me, wearing a pull-up no less. She would no more get up in the middle of the night to walk down the hall, and drop a load on the floor of her own bedroom than I would feel the sudden need to get up in the night and rush out to unload the dishwasher…NOT going to happen.

But then Rachael tells me, “I STEPPED in it!”

Well, that can’t be good.

And now I can smell it….and it makes me wretch a little. I get up, get no further than the end of my bed than I can see what has happened. The dog has gotten sick in the night…she’s had an attack of diarrhea and instead of picking one particular spot to have her horrific bout of sickness, she decided to go on the grand tour of the house. It was in every room of the house, in wide-sweeping puddles, on the walls, it was everywhere. It was in the kitchen, she even made it into both bathrooms, and unloaded a major deposit in the garage where Nathaniel has his legos set up to play. I’ll give her this, she’s thorough.

I spent the better part of 90 minutes cleaning, bleaching and sanitizing the house. About 89 minutes of that was spent cursing the dog under my breath. Not in gentle mommy euphemisms either, no it was full-blown sailor time for this kind of situation. I made up new curses, it was impressive. Thankfully my kids didn’t pick up any of them.

After that, my previously indoor dog became an outdoor dog. She’s really not happy about it, but I don’t really care at this point. I went today and picked her up a new bed (vile is too lenient a word for what hers was), new bowls for food and water and a whole different food for “sensitive stomachs”. But outside she stays.

Truly, once you’ve gotten through that experience, the rest of the day is just a piece of cake. Peyton and I dropped the older two kids off to school, she and I hit the road for Little Tales at the Children’s Cancer Center and after that we had to head to her clinic for a finger poke. She was so excited about the finger poke! “That doesn’t even hurt, I’m so glad I get a pokey today and not my port.” Crazy, huh?? I can’t complain.

Her counts were good:

Hemoglobin 11.5 (good)
Platelets 198 (great)
WBC 1.8 (low)
ANC 800 (low)

Her ANC took quite a dip from two weeks ago. She was at 2400 and they increased her chemo doses on her nightly 6MP med and it really showed up in the counts this week. I hope that from here it starts to rise because this is low but anything under 500 puts her at high risk for infection.

Overall, she’s doing great. She’s developing a cough that is making sleep a little hard, I gave her a little dose of Benadryl last night to help her sleep. The last couple of evenings, she’s been warm, not feverish by the “call the oncology group now” standard, but elevated enough that I take her temp and she’s coasted just under the 100 degree mark several times. We have friends with all sorts of pneumonia and upper respiratory issues right now, and unfortunately, her counts were steadily falling when we were with them last, so I worry that she may be in the process of building up a good sick. We haven’t been in the hospital for fevers since August, so I feel pretty lucky about that.

Because of her lower counts and the potential for fever, I had to tell Nathaniel that I couldn’t go on his big field trip with him this Friday. The field trip is to St. Augustine, we were planning to go over Thursday afternoon, ditch the girls with Grandma, spend the night over there just the two of us and have some mommy-and-me fun before we met up with his class on Friday morning. These is one of the big things that stinks about having a sibling with cancer. She looks good, she plays hard, she isn’t SICK per se. But yet, her health needs supercede every other plan. If she has a fever, everything else has to go on hold, if she doesn’t feel well, we don’t take her out, we all have to be gentle and patient when she’s having her steroid issues….even when I’d be taking kids out with a whiffle ball bat if anyone else acted like that in my house. It’s unfair and the kids have every right to be angry and put out that they always seem to come in second place when it comes to her not being WELL. I hurt for him because he’s so disappointed, I am too.

We did come up with a good solution that is helping smooth it over. Grandma is going to go with him on Friday and spend the day with him during the field trip. It’s not mom, but he will have someone there with him the whole day. He’ll still have a good time and I love him more because he’s the one that comes to me and says, “It’s ok, mom, there will be other field trips.”

I’m working up a good case of the nervous queasies. Tomorrow is the Breakfast of Hope for the Pediatric Cancer Foundation. A video that I’ve been working on will shown at the beginning of the breakfast, I’ll post it up on youtube when the breakfast is over to share with you. And I have to give a speech. Those of you that know me know that I like to talk….no comment, sister of mine!….and those of you who don’t know me personally, have probably guessed that I like to talk. I don’t however like to talk up on a stage in front of people. I’m so not that person! I say UMMMM a lot, I lose my place in my speech, I get that weird rapid eye twitchy thing going on…I probably should have warned the PCF people about that before I agreed.

So, I have my speech prepared…it’s pretty good, I think. I’ve been practicing and practicing and the children think I need to be medicated because they think I talk to myself. Great, dad left us with this crazy person!!!

But I am excited for this opportunity to tell a little of our story to people with the kinds of deep pockets that could make research projects HAPPPEN! I get to stand up and be a parent that represents all the other parents who feel voiceless and helpless…no pressure there I guess. I also want for my kids to know that when I feel strongly about something, when I passionately know that it is the RIGHT thing, I don’t let a little thing like a paralyzing fear of public speaking get in my way of doing what I can to make things happen.

Please say a prayer for me that I don’t completely flub tomorrow. That God grants me the voice to be strong and compelling and that the event is able to reach through the walls people build to protect themselves and really touches people.

f.r.o.G….fully relying on God
–Anissa

This morning when I got on the computer I noticed that I was hit #666 for the day. GREAT, now I’m feeling like the “Satan’s Blog”. Fantastic way to start off the day.

Peyton did the clingy please-don’t-make-me-stay-here-with-these-people-they’re-weird thing at the door of her classroom this morning. And of course, I’m thinking “you don’t want to hang with these kids because they’re weird but you want to go home with ME?” I guess it’s all about the weird you know, right? Again, she was in a fantastic mood when I picked her up so I know she’s loving the school thing, even if mornings are a hard separation.

I had a doctor appointment this morning to get results from a biopsy I had to have last week. Before that statement totally freaks you out, it was a pretty standard routine thing to have done in prep for a procedure I’m having in March. No biggie. However, with the words biopsy and pathology report in the same sentence as my name, I started to feel a little queasy going into the office. Thankfully, everything came out perfect, everything is as it should be and now we shall do a little dance!!! I’m dancing right now, be thankful you can’t see it.

I’m also dancing because of the Giants’ FANTASTIC show last night. It was an awesome game, I’m so glad I watched and I had the pleasure of enjoying it at my friend Mary Ann’s. She throws a fantastic shindig and we had a blast, plus she’s a Pats fan and I loved being able to rub that in her face. Yeah, my house would fit in her master bathroom, but her team LOST!!! There was a great shot of Tom Brady’s face as he walked off the field and truly if I could have that picture blown up, framed and hung over my bed…well, let’s just say my life would be a happier place. LOVED IT!!!

In light of all that our friends the Gliddons have been through in the past few months, it’s been hard to stand by and feel like there’s nothing I can do. There’s a group of us as cancer parents that stand around and feel like we SHOULD be able to do something but there isn’t anything. The words that we say have already been said and that doesn’t make anything better, there is nothing we can do or try to make this situation bearable for them. It’s awful, no one should have to lay in bed with their child and wonder from moment to moment what’s happening in their body. Can I just tell you what a sick feeling that is, to lay awake for hours, just considering the possibilities, letting the fear run rampant and knowing that it doesn’t help, but there’s no way to stop your mind. It hit me that feeling useless in the face of their situation, feeling pointless in their greatest pain must be what all of our friends and family felt for us when we were diagnosed.

I remember all the wonderful people who called, who brought meals, who showed up with gifts for the kids, who offered anything to help us through, who just showered us with blessings of support and encouragement. The hundreds of cards and emails that flooded in, the hugs and tears on our behalf. And it didn’t help her cancer. It didn’t make it go away, it didn’t make her hair stay, it didn’t make it better when she laid in bed and cried from the pain. But knowing that we were loved and that if I needed it I could reach out and someone would be there for me, that helped me get up to deal with another day. It helped to always have someone to talk to, to cry to, to just sit in silence, to pray with. It did help. And I sure hope that in our inability to help our friends, we are still able to do that much.

And to end the post on a high note, Nathaniel is 10. I think 10 may be a rough year for me.

We love the movie Hairspray, the new one, not the older John Waters version. The newer, shiny, kid-friendlier redo that came out last year. The kids love the music, we listen to the soundtrack almost daily…we love the movie, the kids can practically quote the entire thing….and oh you have not LIVED until you’ve watched Peyton dance to it. I’m going to have to get that on video and youtube it for you, it’s a hoot! But as the newness wears off, the kids start noticing things they didn’t notice the first 342 times they watched it. So tonight Nathaniel comes to me with this one:

“Why were they stuffing things down their shirts?”

“Well…they were trying to make their boobs look bigger than they really were.” ?yes, that’s what we call them in our house, I don’t know what you call them in yours, and I don’t know if I really WANT to know.

So, he thinks about that for a minute. I move onto a whole different ANYthing to try to move past where this conversation is leading….because I have SEEN the movie, I know what’s coming next, I know what scene he is talking about and I don’t have to call my psychic friends network to know what his next question is going to be.

“So, why were they stuffing socks down their pants?”

OH SHOOT ME NOW!

“Umm….welll….still with the trying to make things bigger than they appear.
‘
“Oh, you mean their penis?”

I think at this point I had a mild heart attack, I definitely felt some popping sensations going on.

“Yeah, that.”

“Why would you want that to be bigger?”

At this moment in time, I am seriously loathing Peter for being safe in GA while I am handling this situation. HE should be dealing with these questions, this was part of his DAD job requirement! I do all the girly bits and pieces, HE has to do this talk.

“I have NO IDEA, maybe their pants were falling down.”

“Oh, that makes sense.”

So, I’m just waiting until the next time I remind him to put on his belt….”No, it’s ok, mom, I’m waiting on some growth to keep them up!”

Good luck to you there, son.

f.r.o.G…fully relying on God
–Anissa

“What is that awful smell!?”

“That, my children, is the smell of motivation.”

“Oh good, because I thought it was bleach and that we were going to have to clean today.”

They are smarter than they realize.

We did start off the day with a healthy dose of de-grime-ification. I also hit the house heavy on the trash bags, pitching and discarding as much as I could, as fast as I could between cries of “Hey, I wanted to keep that!” and “That’s mine!”

I don’t care. I am the mean and cruel mother spoke of in myths and fairy tales who will force you to clean your rooms and throws away your broken toys and random piles of crap….I am SPRING CLEANING MOTHER. So rarely is this fictitious creature of lore seen around our place that when I was on my hands and knees scrubbing under the fridge, Rachael stood behind me for a full two minutes before she couldn’t take it any more and asked, “Did you lose something under there, mommy?”

No, this is what normal people do, they clean under their appliances. I’ve been trying to shield you from these strange and unusual habits long enough, it’s time you were awakened to the realities of life.

I truly detest when people say things like “Oh, my house is such a wreck”, then you go there and it looks like a Martha Stewart grenade went off in their house…organizing clutter and attractively matching throw pillows to handmade candles or WHATEVER! My house stays in a general state of disarray…I don’t fight gravity by trying to fly off my roof, so I don’t fight child nature by trying to keep a perfectly clean house. My kids can dirty and mess faster than I could possibly clean, so I live in a constant stage of “taking off the top layer” as my mother in law so politely calls it. My TOP LAYER seems to be getting thicker as the months progressed.

So, today we actually got out the tire iron and pried a few of those layers off the house, and it’s magnificent. Probably still a crud-hole of despair as far as most of those TLC-driven shows that show you how to take a 200 sq foot room full of stuff and magically put it in a 6”x8” cardboard box would think. But by Mayhew standards?? It’s ready for the flipping Queen of England to sit her fanny down for tea!

Ok, so no, that’s still a gross exaggeration, but we did get a lot of stuff thrown away and did get seriously scrubalicious today. Fun times.

After that, the kids and I took food up to have a cozy meal with our friends who are stuck at the hospital due to a fever, the Keslers. It was a nice time to break up the hospital monotony, the kids had fun running wild in the playroom and I always enjoy time spent with Mary Lynn. We also had the chance to run over and say a brief hello to one of our newer friends, Presley, who also got admitted today because of a fever. She, however, was not so happy. She was fully in miserable mode, with a very high nasty fever and we said a big prayer for her tonight to feel better.

Our dear friend Dana Bertoch is home tonight, hopefully still resting, with a serious bout of bronchitis. Even 3 years out of treatment, the body can have to work to bounce back and Dana’s immune system has never fully recharged. So, we ask for many prayers for one of our most favorite people in the whole world as she recovers from her illness.

We continue to keep the Gliddons firmly wrapped in prayers. Matthew had a tremendously scary episode early this morning when his symptoms mirrored those of Monday when he had his brain bleed. However, tests showed improvement and as the day wore on he was cheerful and active. We didn’t get to see him while we were at the hospital because my three kids have no business in any ICU unit. But we heard wonderful reports from our friends that were able to visit that he was talking and interacting well, that he was in good moods and enjoyed his friends coming to visit. We are so thankful to God for bringing Mathew this far and I eagerly wait to see the next steps in Mathew’s healing.

I also eagerly await seeing Tom Brady trip putting on his pants and completely throwing his shoulder out! GO GIANTS!!!

f.r.o.G….fully relying on God
–Anissa

PS…THANK YOU so much for the wonderful birthday wishes! I managed to go a whole day 34 years old and I haven’t broken my hip or been asked to wear a Medical Alert System for Seniors yet. But tomorrow is another day.

And a special gift to me from Flashes of Hope

f.r.o.G.
Anissa