Hope4Peyton

The Children’s Cancer Center is an amazing place. As you can guess, they give support to families coping with childhood cancers of one form or another. We were lucky to get involved with a program called the Big Buddy Mentor program and today was the kick off party.

This program is for siblings of cancer patients only, it’s an opportunity to give them some much needed attention and individualized care. The CCC picks second year medical student volunteers to buddy up with siblings for a year, and once a month they get together and go on outings to amusement parks, movies, whatever the kids like to do. This is a fantastic opportunity for the child to have a special friend in a difficult family time, and a chance for these future doctors to learn something about how illnesses have an effect on everyone in the family.

Rachael’s buddy is named Marie, she’s a sweet young lady with a great smile and Rachael just adored her. They played and painted and talked through the whole party. They won tickets to go to the Lowry Park zoo and the CCC covers the cost for them to be able to go on these fun adventures together. Rachael got in the car and when we asked her how she liked Marie she couldn’t stop gushing about the fact that “She only plays with ME! She is only MY friend! She didn’t play with anybody else, only ME!” I know Rachael is aching for some extra love and attention and we maybe can’t always meet that need the way she needs, so now she has an extra special friend who’s only purpose in her life will be to be there for her.

Unfortunately, Nathaniel’s buddy Charlie was sick today and unable to make it. We will have to make a date to meet him because they won tickets to go to Busch Gardens for their first outing! Nathaniel’s so excited because he LOVES roller coasters….hope this Charlie guy does.

It was a fun afternoon for the kids to get to play and meet some new kids and friends and we had the chance to meet new parents and talk with the Children’s Cancer Center workers. They are a fantastic group and I hope to have time in the future to do some volunteer work with them because they do great things in helping others.

With Love
—Anissa

This post isn’t about Peyton, it’s just a post of thanks.

Thanks to wonderful friends, who call or email every day just to say hey, who make sure I go out to breakfast or lunch to have adult conversations and are there for me to cry on their shoulder and make me laugh to forget how difficult things are sometimes.

Thanks to my mother in law, who picks the kids up last minute, who comes by when I’m not home and does a load of laundry and a sink of dishes, who never stops helping and supporting us through the hardest of times.

Thanks to our preacher, who doesn’t know us all that personally, but seems to find messages that speak to us and keep our hearts where they need to be.

Thanks to our school, who continues to take amazing care of our kids and provide an environment of nurturing love and support. It’s a wonderful gift to be able to walk away each day confident that my kids are in the best place, the right place for them to be.

Thanks to two special Lisas in my life, Greenaker and Bedrosian, who provide comic relief and spiritual guidance. They both bring me comfort and give me strength and keep my feet pointed on the right path.

Thank you to all who have helped, contributed and prayed about our fundraiser. All efforts are going to be a huge help and relief and our gratitude is unmeasurable.

Thanks for my children, who bring so much laughter, joy and frustration into my day. My wonderful husband who holds my hand and goes through each moment together, we give each other support and hold each other up through it all. My love for these people is indescribable.

Thanks to God for our daily blessings of having another day to spend with our loved ones, of having opportunities to be an example to others, of holding dear the gifts we’ve been given.

With Love and Thanks
—-Anissa

This week has been a wonderful break for us. For those who tried to hit the site and found it down, it was a minor glitch and we're glad that our hosting buddies are home from vacation and flipped the breakers that turned off power to the server! Thanks GCIS and Sandi and Lloyd, but they deserve a vacation if anyone does.

Monday, Peyton and I went to the clinic for chemo via port and two shots in the legs. It constantly amazes me that after a painful treatment, she can still give hugs and kisses to her nurses and walk out with a smile (most days). Her blood counts were down, her ANC is almost non-existant, but she's doing great.

We've enjoyed the fact that we have no clinic visits until Monday of next week. No finger pokes or transfusion trips, so she's just bouncing around as happy as can be. I'm pretty darn happy about it myself.

I visited Nathaniel's class this week and did a little talk about Leukemia and what's going on with Peyton. The kids were great and just had so many questions about her cancer and treatment. They are a wonderful group of kids and they pray for her every day. They wanted to know what hurt, what her treatment was like and were so funny about her having her own website. They told her she was famous! It was a good thing for Nathaniel, for his classmates to understand a little more about what his life is like right now dealing with Peyton's illness. I made sure to let everyone know how much he helps out at home and what a great big brother he is.

Rachael holds Peyton's hand each day as we enter her clas and makes sure no one touches her with "germy hands"….she stands there like a little bouncer and yells "don't crowd her!" ….she has a bright future in the Secret Service.

Peyton and I are heading to St. Pete tomorrow to visit our special friend Adelaine and have a play date. It'll be so good for her because she hasn't had any of her normal play times, no day care friends, no ymca nursery friends, it's so isolating. I can't wait to see her get some good play time with someone on her level. Our good friend Chris took the girls so I could go out to dinner with another group of friends over the weekend whil Pete worked. Her two daughters Morgan and Paige are 8 and 5 and my girls just loved the time playing with them, it was good for us all. THANKS, Chris.

The fundraiser is going wonderful, we've had a great response so far and we are still waiting to start working with our church. We are just humbled by the generosity and love of everyone around us, what huge hearts we see. It is going to be a huge help with bills and expenses and we're thankful beyond words. Our next goal is to have a poker tournament later on to raise more money down the road, and possibly a golf tournament. We'd like to help some of the families we've met that we know are struggling as well, with both the emotional and financial burden we have thrown on our backs. If anyone knows anything about starting a non-profit organization to help families with childhood cancer I'd love to hear from you and pick your brain, I think that's something that we're being called to do.

Peyton is an amazing testement to God's love and strength because people who see her are constantly commenting on how happy and healthy she looks. She usually has a smile on her face and a bounce in her step. It's more than we could have ever hoped for, she's so joyful and her body is doing a great job of handling all it goes through.

With love
—-Anissa

ps…GO COLTS! We are so planning to send a copy of these pictures to the Colts and hope Peyton Manning gets a glimpse of his cutest fan.

Wednesday was supposed to be an easy day for us. Peyton's port was already accessed, she was going to go in, get her medication and blood transfusion via IV and we could show her big brother and sister the clinic and let them see what it was like for her to have her treatment. Unfortunately, they got to see a really horrible view into what her day can be like

We don’t know why exatly, but when I got the kids to the clinic, Peyton's needle had come out of the port. It was still in her skin, but the needle was imbedded in her chest, free-floating in there and causing her a lot of pain. The nurses had to take the needle out and reacceess her. Normally when we access her port she has on EMLA cream which numbs the area really well so that it doesn't hurt much. They used a freeze spray yesterday because the EMLA cream takes 35-60 minutes to become effective, but the freeze spray didn't work very well. It caused her a LOT of pain and she just had a nuclear meltdown.

It was overwhelming and frightening to watch her struggle to deal with her pain, frustration and anger. She threw herself on the floor, she punched herself in the mouth and split her lip, she bit things, she bit me, she was scratching the walls and chewing on chairs, she screamed and cried and growled and said the most hateful things she could think of (which is pretty limited, but still pretty hateful), she was just out of control. By the end of her hour long fit, she was covered in her own blood, she was bruised from throwing herself around and she'd managed to pull her port out again and had to reaccessed AGAIN!

At one point of the episode, I just sat and cried next to her. She wouldn't let me touch her or console her, she would swing at me, try to bite me and kick me. "I don't want you, I don't love you, you're not my mommy," I know she didn't mean them, I know she probably didn't know what she was saying, but it broke my heart. It hurt me so bad because I just wanted to wrap her in love and take her somewhere it wouldn't hurt her anymore. It was just painful to watch her go through this because there was nothing to make her feel better, nothing to make it go away, I hate that she has to deal with this life right now. It made me so angry that people who are horrible and rotten and probably deserve for terrible and painful things to happen to them live long easy lives and my poor baby has to suffer through this. It's just agonizing as a parent to watch helplessly. I had to pray a long time yesterday on the drive home to work through my frustration and anger, to pray for strength for the next day, for the next treatment, for whatever happens next.

When Peyton was crying and screaming through her first access, she wanted Rachael and I had the nurses bring her in. I was worried that it would freak her out, that it would scare her to see her baby sister go through this, but I also wanted her to understand that it isn't about Peyton coming home with presents and prizes from the clinic. This has been hard for her to grasp and there's been a lot of jealousy and hurt feelings because I know she doesn't understand. When she came in, Peyton was hysterical and Rachael went right up to the table and took her hand and told her "Rachael's here, I'm here with you. I love you, Peyton, I'm here." She kissed Peyton's hands and forehead and just talked to her through the whole procedure. When things got worse and Peyton started to get out of hand, Kyleen came and got her and kept both Nathaniel and Rachael distracted in the play room until Peter could come pick them up. It was awful to me to have to let Rachael see this horrible experience, to expose her to this. However, I was amazed at her compassionate heart, she wasn't scared, she didn't pull away, she went right to her sister to comfort her and protect her and to give her love. It was the high point of the day to see my daughters reaching out to each other, at this age, to find strength and love. It was good for Rachael to have her eyes opened to the reality of what Peyton goes through to help her understand why we have to do so much for her, and why things have to change for a while. I hope it helps and that she is able to understand what's happening.

Peyton did finally calm down, Peter took the kids home to calm them down and spend some time with them explaining what happened and helping them understand. Peyton got her transfusion and took a HUGE nap, she was exhausted after her episode. She woke up happy and chipper. When we got home, Grandma Sharon was here to feed the family, she took the two older kids to the Y for Nathaniel's tae kwon do class, Peter played with Peyton and Mom passed out at 7PM. I was so worn out physically and emotionally that I just went to sleep and trusted everyone around me to deal with whatever needed to be handled. I'm so glad we're a fanily and we have each other to rely on, because when I don't have the stregth to deal with one more thing, someone makes sure to pick me up and help me through.

We had an easy day at the clinic today. Peyton suffered some risidual emotional issues from yesterday, fear of pain and a little leery of nurses that she loves. But we got through it, it was simple and we got out fast. Tomorow we have to go back for a platelet transfusion and please pray that goes well. I'm going to miss a school function of Nathaniel's and I'm hoping that he's able to understand that. He's going to have hurt feelings, I'm afraid, but pray that I have the right words to make it ok.

We get so little notice on the blood and platelets, if people want to donate, please just do so. Red blood is good for a month and platelets are good for a little over a week, so if we can use it then it will be available, if not, someone else will be able to. Thank you so much!

—Anissa

Psalms 31:24 Be strong and take heart, all you who hope in the Lord.

Our sweet friend Kate is in the hospital. We met Kate and her family in Orlando at the Cancer Families ROCK event. Kate is 2 years old and has brain tumors that she is currently in chemo treatment for. She went in to the hospital today with an infection in her port and we ask for prayers that it is treated with no complications so this wonderful family can take their littlest angel home soon.

—Anissa