Hope4Peyton

It's about 5:30 PM on Thursday and I'm taking Peyton to All Children's Hospital because she has a fever of 102.

Keep us in your prayers!

—-Anissa

Monday starts Peyton next cycle of chemo IF her blood counts are high enough. Her ANC was 500 at last count and if it's not at least 750 on Monday they'll put off giving her more chemo until it comes up. Although the severity of the treatment they give her will drop it rapidly I guess they want her to have a little wiggle room.

She's learning to wear a face mask, I'll post a pictures soon. They're to safeguard against germs and infection, but getting her to keep one on is ridiculous! It's also hard to put pu it on her because people just stare and I can literally feel their thoughts. I guess there's something that can irk in the difference between loving sympathy and straight out pity. But I'm going to keep taking her out as much as she feels like going and it's just my pride that's talking there.

The Tupperware fundraiser stuff should be arriving any time, I've got my fingers crossed it'll show up before the weekend so we can have it ready to go next week, but we'll see how US postal service treats us. Thanks so much for the fantastic offers to help out and participate, it means so much to us!

Tomorrow is Grandparents Day at the kid's school and we're looking forward to a fun day as the kids celebrate with their Grandma Sharon. They have been practicing songs and poems and making special crafts, plus they're super excited it's an early relase day, whooooppppeeeee! I'll have to come up with something fun to do with them.

I have two great friends with fantastic news! Kara Sue and Ivy are both expecting new babies and I am so thankful and excited for them. Please just add these new lives to a prayer for health and happiness, and for their mothers to have nice easy pregancies.

Love to all!
—Anissa

NOTE: You may have noticed from the announcement “XYU was here” that our website got hacked. Pete’s going to fix that, but what an inconsiderate thing to do.

When we reel from the idea that Peyton’s two year old body harbors cancer, we are grounded by the news that it’s doing an amazing job of battling it.

On last Thursday I took her to the clinic for a finger poke to see if she would need a transfusion of platelets because her counts were dropping. The normal range is between 150-450,000 and she was at 58,000, and they felt that she could wait the weekend because they transfuse when they hit 20,000. Today Peyton had her chemo treatment and when her blood counts came back her platelet count was over 400,000!

It’s a cycle of highs and lows, when she has more chemo obviously her counts drop and when she has less her body fights to go back to normal, but she’s only had 1 week of lighter chemo doses and her body has already done a great job of getting her back to normal. It’s wonderful news and I know that I felt great about it. We have the rest of this week chemo-free and then next week we start back to a rough regimen of two weeks of chemo 4 days a week. It’s a cycle that’s very hard on her body, has shown the harshest side effects and is also the most painful. So, keep her in prayers that her spirits will stay high and her body will stay strong.

As for how she’s feeling, she’s doing amazing. I really thought she’d start to look and feel sickly, but she just looks like a plump little angel. She’s all smiles and talkative and wanting to go and do, so as much as we can we keep her active. It’s wonderful to see her so full of life and it helps us to cope with the stress of the situation. Her ANC count dropped to 500, which is the magic number that means she’s high risk for infection now and we have to be on super germ duty. I’m sure people think I’m obsessive because I’m constantly washing the kids’ hands, but that’s how we roll these days!

As a family we had a fantastic weekend! On Saturday we went to St. Petersburg and spent the afternoon with a family that we met at the American Cancer Society event we went to in Orlando recently. They have the two year old Adelaine (her picture is in the AMS event posting with Peyton) who shares not only Peyton’s doctor, but her diagnosis and her ability to be joyful no matter what. Her family and ours share so many similarities and have many things in common besides the cancer that brought us together, so we feel lucky to have met them and to be developing this friendship and supportive relationship. I hope we are able to get together often, as their three kids and our three just had a blast together. I feel like God is just bringing the right people into our lives at the right time to give us the care and support we need. We are so blessed and thankful.

On Sunday we went to church and then happened to run into good friends of ours at lunch. We got to eat part of lunch with the Greenaker family, who never fails to make us laugh and bring us tons of cheer. When Peyton started to feel bad as soon as the food arrived (of course, because she’s a girl-child!), they kept Nathaniel and Rachael so we could take her home to figure out what was wrong and get her feeling better. Nathaniel and Rachael had so much fun at Lisa and Harry’s house, it was just great. For these two kids who’ve been dealing with so much it means the world to have friends who open up their homes and devote time to giving them fun and attention. These are special people….and I can hear Lisa’s head swelling up from my computer!!! I love you, Lisa!

—-Anissa

You know the funny thing? She looks just like she did as a baby…only she’s taller and she talks a lot more.

Peyton @ 6 months old

Peyton last week

We just found out our daughter has cancer, whatre we going to do?

We’re going to Disney World!

Its ok to laugh, that was meant to be funny! I know sometimes people think our humor can be a bit irreverent in light of the seriousness of all thats happening and one thing we really felt this weekend was that laughter really is a great healer. It relieves our stress, it helps our kids to see us smiling and happy and if we lose our ability to laugh, cancer has taken something yet another thing from us. We refuse to let it.

We left for the American Cancer Society sponsored Cancer Families R.O.C.K.(which stands for Reaching Out to Cancer Kids) program this past Friday. We stayed at the Contemporary Resort, gorgeous!, and had a fantastic, emotional and worthwhile time.

We met families whose lives were being touched in many of the same ways ours are, who are dealing with the same emotions and we shared stories, tips and support. We went to educational classes based on our childs diagnosis. This event was for families all over Florida with children who have a form of cancer, so we saw kids with Leukemia, Lymphoma, brain tumors, eye tumors, soft tissue cancers, it was awful and amazing. Some of these kids looked tired and treatment-weary, some of them looked healthy and vibrant, all looked happy to be with other kids and in an environment where they were free to just be themselves. The families all shared a sense of shell-shocked relief.

This is Kate, a 2 year old who has a brain tumor. She, Adelaine and Peyton had a wonderful time together.

Peter and I both heard a lot of stories of diagnosis, treatment and prognosis. While it is fantastic to receive the amount of loving encouragement and support we get from those around us, it was a different experience to be in a group with people who understood the terminology, who got the difficulties first hand, who werent silently horrified at the thought this could be my child because it already WAS their child. I know I do this, I dont know about Pete, sometimes I dont want to tell people how Peytons doing, because I feel like maybe they dont really want to know. Its hard to hear, it brings home a terrible fear in people that it could happen to them too. This weekend was about being able to be totally free about our fears, angers, frustrations, guilt, weaknesses, strengths, hopes, wishes and dreams, knowing that everyone in the room had felt every same emotion at one point or another.

We met some wonderful families, both close to us and across the state, who we are planning to stay in touch with and continue to give to and receive support from. Our kids had the most amazing time, Nathaniel and Rachael just got to let lose and play and they had sooooo much fun. Peyton met friends her age, with the same diagnosis and as families were able to really bond and I feel like we walked away from the weekend with some new friends who are going to be a wonderful presence in our lives.

This is Marissa, a 5 year old from Jacksonville who has brain tumors. She and Rachael became fast friends.

I shed tears so many times this weekend. Some were of thankfulness to see Peyton playing, just running around with no concerns or fears just laughing and giggling with her new friends. Many tears were shed as I listened to the stories of other families who were struggling to cope with their own every day issues. Tears came easily and frequently, but they were healing and therapeutic and I wasnt embarrassed to cry or ashamed of my need to. When we needed to, we just shared tissue boxes and held hands and felt the acceptance of each other person there.

Our hotel room had the most fantastic view of the Magic Kingdom, the girls were so excited because you could see Cinderellas Castle from our balcony. Nathaniel was equally thrilled to see that Space Mountain was there. Our day at the park was sweltering hot, overcrowded due to the holiday weekend and utterly wonderful. For Rachael and Peyton it was like their first visit because neither remembered their first time. Its just so much fun to watch their eyes get big and their mouths drop open when they see Goofy or Mickey or the Castle up close for the first time. We spent time with our new friends at the park and just let the kids play, we werent worried about getting to one ride or the other, just spent the day leisurely.

We are so thankful to the American Cancer Society for providing this weekend. Its just for families with kids who have cancer that is newly diagnosed, so we were all families that needed each other and this experience. We want to thank our neighbors Greg and Theresa who made sure our dog got fed and watered in our absence, as well as put up a swing set in our back yard. We could not have gotten better neighbors and friends if wed custom picked them, they are wonderful people and we are lucky to have them. Were always thankful to Sharon, Peters mother, who showed up at the door at 8:30 pm when we got home from Disney tired and sore and stinky, with a hot home cooked dinner in her hands. No, shes not for sale or rent, were keeping her!

Adelaine (I know I probably misspelled that) is the little blond sweetheart in the pictures with Peyton. Shes 2 ½ and was diagnosed with Leukemia in July also, just two weeks before we were. Her family lives in St. Pete and we are looking forward to building a great friendship with them. Adelaines mother Angela told me at one point that we would probably be in the hospital in a week or two with some infection. I agreed while watching our daughters roll around on the floor of the play area in complete abandon. She asked me if I thought Disney was worth it. I thought that Disney wasnt worth it, but the weekend as a whole, the healing time and chance to experience being with others who are just like us, that was worth it.

——Anissa

ps…We posted more pictures from our weekend in the gallery to share with everyone.

Peyton had a gleeful time telling everyone that Rachael and Nathaniel were getting shots today. They both had well visits with the pediatrician this morning and Peyton was just thrilled to no end that someone else was getting poked today. She stood right up to the edge of the table and held Rachael's hand the whole time, but grinned from ear to ear….it was truly hysterical. Rachael was a brave soul, not a single tear was shed as she got three shots. She was my big brave girl and when we talked about how Peyton does that every day I think it connected a bit more what she has to go through. Maybe a hard lesson, but I think it helped. Nathaniel was find, had to get a throat swab and that was it, however you would have thought they amputated a leg…I had to tell him to suck it up.

At the clinic visit, Peyton got a transfusion of red blood cells today. Leave up to a child of mine to make sure nothing is ever simple. This was to be an long, but simple procedure. Go in, access the port, give her some meds and blood, go home…but we have to keep things interesting around the clinic. It's a 3 hour process for even the minor amount of blood that she received today. So I made sure to pack a bag full of her favorite things: movies, games, puzzles, coloring books, snacks. About halfway through the transfusion, she was into a new art kit that I wasn't paying enough attention to….it included scissors.

She says, "Mommy."
From behind my crossword, I say, "hmmmm?"
She says, "Mooooommmmy."
I looked up and she has her blood dripping tubing in one hand and scissors in the other. Interesting, huh? She'd cut into the transfusion line! I yelled for the nurse, we all sprang into action, got it clamped down, changed and cleaned up. All was fine, amazingly enough not a drop of blood on either Peyton or my clothing. The nurses and other clinic workers were cracking up the rest of the day, walking into the infusion room asking if anyone had scissors handy or wanting to know if she gave haircuts too. That was a first for them and they said she'd definitely go down in the record books of the clinic.

Makes a mama proud.

So, otherwise, the day went well. All three kids home safe and sound….Peyton fairly bouncing off the walls from the energy the red cells gave her. Her ANC dropped to 900, but we're still on the go to the American Cancer Society get together this weekend, so we're excited and have a game plan should anything go awry, but pray for us as this is our first real excursion outside the safety net. It's sure to be a little nerve-wracking for Peter and I. I'm sure the kids will be totally oblivious with all the fun stuff going on.

As they should be.

This Bible verse was shared by a wonderfully strong and caring friend. It meant a lot that she thought of me when it spoke to her heart and I appreciate the strength it gives me.

Jeremiah 29:11-13
For surely I know the plans I have for you, says the LORD, plans for your welfare and not for harm, to give you a future with hope. Then when you call upon me and come and pray to me, I will hear you. When you search for me, you will find me; if you seek me with all your heart.

—Anissa