Hope4Peyton

Some parts of yesterday were definitely better than others.

Peyton was given her very own pair of [url=http://www.glamourflops.com]Glamour Flops from Dana Bertoch[/url]. Her’s aren’t the Swarovski crystals, but they are “my prettiest shoes EVER!” Dana is a precious person with a huge heart for the kids of the Children’s Cancer Center, because just a few years ago she was one of them. She is one of the walking inspirations that make going there such a joy for the parents. Being able to hear her say the words “I’m a survivor” strengthens our hope and makes us dream of the day that our kids can say the same.

Don’t you wish you had a pair?? You can at [url=http://www.glamourflops.com]www.glamourflops.com[/url], for little girls and grown up girls!

We were invited by All Children’s Hospital to be a part of a big press conference to announce a huge gift. Vinny Lecavalier, one of the top NHL players and a Tampa Bay Lightning team member, has made a commitment through his foundation Vinny4 to the construction of the new hospital. He’s donating 3$ million dollars to the new cancer floor and they will be naming it the Vinny Lecavelier Center for Pediatric Oncology and Hemotology!!! How phenomenal is that?

The Lightning players are huge supporters of the pediatric cancer community, their players have to be some of the most compassionate and generous people in sports. From Brad Richards who hosts numerous families in his suite at the Forum to the players that adopt families for Christmas through the Children’s Cancer Center to this new amazing donation from Vinny, we have been constantly awed by the way that the Lightning gives back the community.

In the afternoon we went to the Forum where the kids were gifted with lots of fun swag and then we got the chance to be a part of this tremendous announcement. Peyton had some sweet photos taken with Vinny, she smiled and charmed as per usual, she laid her little fuzzy head on his shoulder and just grinned. After the families had a chance to meet Vinny, there was a press conference where he told everyone about the most generous contribution to the hospital with the children sitting on the floor around his feet. The families included one who’s daughter was also diagnosed with ALL Leukemia at 2 ½ years old and she is now well out of treatment and is just a vibrant beautiful 4th grader now. Again, a spirit of a cancer warrior who beat her disease lifts our spirits and hopes.

The kids took many pictures, Nathaniel and Rachael were totally included in this event, which was so fun for them. There was a contract that was signed by all the bigwigs, including our own Dr. Barbosa (head of our oncology department), Vinny and each of the kids. Peyton signed the board all by herself, all the practice finally paying off.

“Ok, seriously about this bow, mom!”

Erin Kisielewski, Leukemia survivor and her dad

Rachael’s ready for her close-up

Peyton showing off her autograph

After the “warm-fuzzies” wore off and the grumpies set in

Leave it up to Nathaniel to find the only snowball in Florida!

After all that, the kids got teased by the chance to get out on the ice, but the safety issues of lots of kids running wild on a thick sheet of ice ended up nixing that idea. Instead, they played with the goals and got to see the bottom tiers of the arena. Peyton was freezing in the colder areas, and she was tired and grumpy towards the end of the day, but it was a blast for all and we are so lucky to have been a part of it.

Check out any or all of the many news reports on the day, but Channel 10 has a really nice video of the piece that was on TV last night.

Vinny4 – Vinny’s Foundation Website

The Lightning website

The St. Pete Times

Tampa Bay Channel 10 Video

Pictures from TBO.com

And the kids and Vinny made the front page of the Tampa Tribune

We got home and Peyton promptly decided that she really needed a break from it all. Her drippy nose and grumpy disposition led to a fever that ended up with us going down to the hospital for our customary 3 day stay. She’s resting, she slept well last night after a knock down, drag out fight with the nurse who came to access her port. The poor family who rooms with us had to listen to her scream her head off when they came in to do the peripheral blood culture. She really feels that if they’ve accessed her port, they shouldn’t have to poke her arm, but they do to make sure that there’s nothing bacterial going on in her system. She made sure everyone in the building knew exactly how she felt about it….with vehemence…involving large amounts of freak out. It took 3 of us to get that blood, I had to practically lie on her, the strong little mule, but they got it and she recovered from her trauma quickly.

We wait for a few days to see if anything grows in her blood cultures, and if not, we go home with a simple virus. Pray for clean cultures and a clean bill of health for her. In the meantime, we’ll eat room service, watch TV and enjoy the quiet.

f.r.o.G….fully relying on God
–Anissa

ps. I wanted to share the news that IronMan Tim Lee finished in the 14 hour range! That just blows my mind. He went to the hospital after with some dehydration and fatigue…oh, really?….I would be in a coma…but he’s doing much better now and celebrating his amazing feat.

He wrote me this sweet message about Peyton after the race…

” I taped her photo to my bike and I absolutely could not have
done it without her help. We did the race-not me. I talked to her, did a
whole lot of praying, and everytime I started feeling pain I would look at
her smiling face. What an inspiration.”

Ok, is that the very sweetest thing ever?

Lots of love for Tim Lee, his big heart, his commitment and dedication and this tremendous accomplishment.

Sunday we headed to the Children’s Cancer Center to meet Nathaniel and Rachael’s big buddies for the year. Unfortunately, Rachael’s buddy Lily was sick and couldn’t be there. However, Nathaniel’s buddy was there, all 9″ of him….ok, slight exaggeration, but the guy has to be at least 6’5″…Eddie is huge! But his extremely tall body is full of fun and Nathaniel is already planning to have a good time with him. Nathaniel just thinks it’s cool that he has the “biggest” buddy.

“Yeah, you may be 2 feet taller than me, but my ears are bigger!”

Today was counts day at the clinic for Peyton. We went early to participate in a music class that the clinic puts on for the little ones who miss out on school and playdates. We got to spend some fun time with our little friend Allie, banging on drums, dancing around the room and being overall silly. It’s a hard thing for Peyton to play with Allie, but not because they don’t know how to have fun, because Allie’s body limits so much of what she can do. Allie suffers from ITP, a platelet disorder that keeps her body in constant danger. Peyton’s counts are considered dangerously low when they reach lower than 20,000 and she’s stayed nice and stable around 200,000. Allie’s lucky if hers reach 10,000. She is covered in bruises and her mother’s biggest challenge is keeping Allie from hurting herself, the damage could be critically dangerous. Please keep Allie in prayers for healing and for understanding of the limitations of her tiny body. Every 4 year old should be allowed to hop and jump without worry.

Before and after music class, Peyton got her finger pricked and then a clean bill of health for the next two weeks….except for that whole cancer thing, she’s wonderfully healthy. Peyton’s counts were decent, her ANC was 700 (low, but not too low), hemoglobin was 11 (pretty good) and her platelets were 200,000 (that pretty much rocks). So, we’re good for another two weeks when she’ll get her chemo in her port. Tonight she got her Monday dose, which is 6 pills of chemo.

It sort of makes me laugh because people don’t realize how long the treatment is for leukemia. They assume that because she’s regrowing her hair that she’s stopped the chemo, and she’s doing the chemo gig nightly. But she’s doing so remarkably well, a huge turn from where she was a year ago today.

While at the clinic, we hung with a bunch of chemo friends. Zack Rozmeski, Sydney Sims, Jessica Rose Kohut, and Nikki Hawkins were all getting something done today and although there are certainly better social realms to catch up with friends, but it was a nice chance to just spend some time with some of the coolest kids in the world. Life throws so much of them and they face it bravely, they are all such inspirations.

After we left the clinic we headed down to Clearwater to lend a hand for the Cadillac golf tournament that benefits the Pediatric Cancer Foundation in memory of the Amazing Jacob Duckworth. Peyton and I got to spend some quality time with our PCF friends there and saw one person that Peyton fell in love with while planning the Cure Kids Cancer Walk, Mary Baker. Peyton just lit up when she was Mary and Mary was packing fruit snacks and a juice box in hopes of seeing her. The hug they shared was just priceless and sweet.

We got home in time to pick up the kids and head to ChickFil-A for one of those insane “support your school” nights. Just pure chaos. The kids ate in roughly 4 minutes, the idea of playing with their friends way more important than the digestion process. Peyton licked a few chicken nuggets but didn’t really eat anything. She’s feeling a little off tonight, she’s building up some cold symptoms….in fact, she sneezed so hard on me, that I found (way too late) I had a little Peyton-boogie stuck to my sleeve…because that’s how classy I am!

Tomorrow is another big day. I’m keeping the older two kids out of school tomorrow so we can participate in a special event. We are going to head to Little Tales in the morning, but in the early afternoon we are making our way over the St. Pete Times Forum, home of the Tampa Bay Lightning to be a part of a FANTASTIC announcement. The kids are going to be there supporting one of the players as they support our community in a special way (I’m not actually supposed to tell anyone about it…blah blah blah). They’ll be on the news tomorrow evening, every channel is supposed to be there for the big announcement, so try to catch us if you can.

Also , I got THE funniest phone call today. I saved the message that the lady left because it just cracked me up! Someone from the “Asian-American Times” wants to do a feature story on Peyton. Asian-American Times….I didn’t know we had times….how could I have gone this far in my life without knowing that we had times?? So, I guess I’ll be calling them tomorrow to see what exactly they want and how that’s going to play out.

My sister made a request for something that extended family can wear to support a special cancer kid in the Pootique inventory, so I put some shirts up and organized the store a little better. It should be easier to navigate now and make more sense.

Here’s some clarity on what a Pootique is….Peyton’s nickname is Pookah….a store is called a boutique….Peyton’s Boutique….Pookah’s Boutique….ok, follow me here, Brangelina and Bennifer style….Pootique…..yeah? yeah? Got it?

Just humor me, ok?

f.r.o.G….fully relying on God
—Anissa

If you’re interested in the Pootique inventory check us out at CafePress.com

I’ve decided that we don’t need to do any further chemo treatments. I’m not sure what the point is considering Peyton will have the cholesterol of a 75 year old Waffle House fry cook within a couple of years anyways.

In case you can’t figure it out, the picture above is a stick of butter. Notice the little finger marks?? Yes, Peyton ate quite a bit of two sticks of butter. Butter! She actually got them out, let them soften and then proceeded to treat herself to some yummy dairy goodness, one gooey finger at a time. I can almost hear her arteries hardening at this very moment.

I entitle this picture “Displaced Blame”.

Instead of incriminating herself by writing her own name on the bed, Rachael decided to make sure we knew who was responsible….just for clarity, the words say “Peyton did this”. The way I know that Peyton didn’t write this is because she doesn’t know how to spell the words “did” or “this”. Sneaky little monkey.

Friday night Penny Hawkins and I packed up 5 kids into my suburban and we headed north. We’d been offered the opportunity for the kids to go play with athletes from UF in Gainesville. Nathaniel and Jared were the only ones interested AND old enough to participate so we headed up to Gator country Friday night and stayed at a hotel for the night. The trip up was pretty good, with 5 kids in a vehicle, you can never be sure. But our kids get along really well and they kept it interesting, if not quiet.

We got up early Saturday morning and headed over to the campus to drop the boys off. Each kid was paired with a couple of UF athletes from the soccer, football, track and field, swim, softball and baseball teams. Then the kids were separated by age groups and headed off for a series of sporting events. They did basketball, volleyball, soccer and football, they got fed some pizza and had an absolute blast! After all their sports were done, the champion basketball team players came out and greeted all the kids, signed autographs and just hung with the kids before they took off for home. All the athletes were so very kind and patient and just gave the boys a fantastic day. It was awesome to be able to give them this event that was just about them. I have pictures to post, but I’m actually too lazy to go out to the truck, get the camera and download them. Could almost imagine breaking out into a sweat there.

While the boys played Jr Olympics, Penny and I packed up Nikki, William and Peyton and headed off for the nearest mall (Rachael opted to stay with her Grandma for the day). We strolled the mecca of commerce and had some pizza as well. Peyton wore her “Leukemia Stinks” shirt, which drew a few second glances.

After we picked up the boys at 12:30, we made the 2 hour road trip back home and both Peyton and Will were crying from the separation anxiety when we parted.

Peter and I had been offered seats at the 3rd annual Tampa Lyrics for Life concert Saturday night. Poor Pete ended up having to work so he couldn’t go…so I took off without him. Lyrics for Life is a charity foundation born from the hearts of the band Sister Hazel. The lead singer lost a brother as a teenager to Lymphoma and he has found this tremendous way to give back to the cancer community, both through raising funds for research and to improve the lives of cancer families. Lyrics for Life has a number of events nationwide, but the one in St. Pete tonight was an acoustic concert fundraiser to benefit the Children’s Cancer Center, the Pediatric Cancer Foundation and the Loneliest Road Campaign.

We have been a part of a lot of tremendous events and have had the opportunity to see what happens when people with lots of love, steely determination and a mission in their hearts go to work. This was one of those nights when I was just wowed by the impact that this event had. The music was so beautiful and touching, many of the songs were wonderful by themselves, but when the words were sang in the context of the reason we were together, they became more powerful and meaningful. They sang of making the most of life, finding happiness within yourself, there was a special song written and sang by a 16 year old Lymphoma survivor Hannah, and a song written and dedicated to the brother of Ken Block (lead singer). It was a fun night with friends from the Center, a spectacular musical show, and just another great example of how people can truly make a difference.

I hate that Pete didn’t get to go, he would have so enjoyed it. However, he didn’t miss the tie and dress-up clothes he would’ve had to sport, so it’s not all bad I guess.

Tomorrow, after church the whole family heads to the Children’s Cancer Center to kick off this year’s Big Buddy program. Last year we got to participate in this program and it was a very special thing for Nathaniel and Rachael to be a part of. It’s a program just for siblings of cancer kids and the Center pairs up a sibling with a 2nd year medical student from USF. They student spends the school year meeting up with the sibling, they go do fun stuff together, they take the time to give the siblings who are often somewhat left behind in the cancer shuffle some much needed attention and one-on-one time. Last year our kids had two wonderful students and we are looking forward to meeting the future doctors who are going to be our buddies this year.

Yes, it is just one thing after the other, isn’t it?? I won’t even begin to explain what a scheduling craziness next weekend is, I have a whole week to figure that out.

I just want to really thank everyone for the sweet words and encouragement through what was a rough week for me. Hannah’s passing was very hard on all those who loved her and while we were being there for her family, you all were busy being here for me. Thank you for your prayers, understanding and continued support through it all.

f.r.o.G…fully relying on God
–Anissa

Yesterday was such an emotional day. Hannah’s funeral was in a beautiful setting, a room decorated with her favorite toys, most sparkly dress up clothes and her ever-present treasures. When we signed in the registry, we picked up a ribbon and we also picked from a box of “treasures”, strings of beads and fun little knick-knacks, all sorts of the glittery things that would have made her eyes light up. Her family wanted us all to have a treasure to keep of Hannah and I have a little butterfly stamp that I will always keep for Peyton, to tell her some day of the special friend she had, even if for just a short time.

It was a heart-wrenching experience, looking down on Hannah in her favorite Belle costume with the little crown on her blond curls and realize that I would never see her emptying her purse-of-the-day onto the table to show all the other little girls her treasures, never see her pulling the hand of a happy follower to whatever adventure she had in mind, never see her smile and laugh with her family or friends ever again. It hurt so bad and yet, I just touched her little hand and I know she’s waiting for the day when we can play together again.

The family was so sweet to me. I didn’t really realize that I worried that they would be upset with me for being there when she passed. It wasn’t until the grandparents hugged me and whispered such sweet words in my ear that I felt relieved that they didn’t feel I had intruded into such a personal family time. I love Hannah so much, but nothing compared to what they could feel for her and I just hope they understood that I represented many friends who loved and cared for the whole family.

Hannah’s family shared favorite memories of their times with Hannah, they gave us an even more intimate glimpse into the life she shared with so many. They talked about the importance of not just the length of her life but the depths of the impact in that lifetime. And Hannah definitely touched a lot of hearts.

In talking to people around the Children’s Cancer Center, we talk about survivor guilt. How kids, especially the teenage kids, would suffer from guilt related to making it through their cancer when they see the friends who don’t survive. It hadn’t hit me that I would feel some of that. I was thinking about how we would talk to Lisa at the next Little Tales meeting when Mary Ann said that they would be attending the bereavement lunch and it dawned that she wouldn’t be at Little Tales anymore.

I just felt this ball in the pit of my stomach that here I am hugging her and saying all those things that don’t console or really comfort, and I could walk away with my daughter still alive and Lisa and Shawn were going to a home that would forever be missing their daughter. I feel weird about it, I feel relieved in a way and guilty for that. I feel so bad for being grateful that it’s not my daughter and I pray that it never will be. I will confess to thinking about what if it were Peyton, what would we chose to dress her in, who would speak about the impact that Peyton had on the world, how would I be able to stand there like Lisa and face all the people who pressed their cheek to hers and tried to express their sadness.

And I’m thankful. I’m not thankful that it was Hannah or any other child. But I’m thankful that it’s not Peyton, not our child and not our family. And as I’m sitting here confessing what feels like a dirty secret, I’m so ashamed of that.

I was so exhausted mentally and emotionally after coming home that I laid down for a 15-minute power nap and woke up 13 hours later. Peter had fed the kids, made sure they got their baths and took care of them all night while I slept it all away for a while. I have such a sweet husband who took care of all that so I could recharge my batteries and just recoup a few of the sleepless nights I’ve had.

This seems like such a bummer post, but it’s part of the whole package. It’s not all giggles and funny episodes of “Life with the Mayhews”, some days its just “Life with Cancer”. Some days it just hurts to face the reality of it all.

f.r.o.G…fully relying on God
—Anissa