Hope4Peyton

Today at Peyton’s treatment, I got the opportunity to talk to a little girl name Ellie. I am just amazed by the strength of a child to go through so much and remain so joyful and loving. Ellie is about to turn 8 years old, she’s been battling leukemia for over 4 years now due to relapses during her treatment. But with all truth and confidence in her eyes she told me, “But we’re going to get it this time.” What faith and courage that takes each and every day, she had to go through her initial treatment and then start from square one, only square one was 10 times more intense. I hope everyone says a prayer for Ellie, for every child and family out there struggling with whatever it might be. We just need to have faith that no matter how many times we have to start over in life, God’s going to hold our hand and help us “get it this time”.

We are still in our 4 day a week schedule, but with the port staying accessed we are able to do it with minimal pain. Today was not that minimal pain day, however. After they accessed her port she was playing and the access needle got knocked out of the port. When they tried to give her her meds it caused her so much pain she screamed and cried. My poor baby, they had to deaccess her and redo the whole process, but she was such a trooper and recovered fairly quickly. Once we got the needle issues fixed the rest of the treatment went fine. Her blood counts are dropping again, and the effects of this chemo round building up in her system are really taking an effect on her. She’s so tired, she’s white as a ghost and has huge circles under her eyes. She’s really lost most of the weight she’d gained from the steroids so she seems so tiny again. She tires easily, and can’t sleep well because the medication gives her flu-like body aches and she’s in discomfort.

Other than that, she’s doing great! Her moods are good, she’s happy and cheerful. She’s eating a little bit, not much but whatever we can get in her is positive. She’s been fever-free and that’s always great news.

Pete is a great husband and stayed home with the kids this weekend as I went to Orlando Saturday night to see my friend Amy. Amy took me to Halloween Horror Nights at Universal Studios where we screamed ourselves silly from all the freaky haunted houses and creepy crawlies in the streets. It was so much fun and I just really enjoyed the time to relax and be scared crazy.

Overall, we are doing well. Nathaniel and Rachael are doing excellent at school and Rachael starts beginner gymnastics soon so she’s super excited about that. It’s going to be a lot of fun for her and I hope it boosts her spirits. I’m taking the kids with me on Wednesday to the clinic. Kyleen, who is our child life specialist (a child psychologist who works with kids and families to help them cope through this whole experience, and she’s amazing!), suggested I bring them on her transfusion day so they can see what happens at the mystery “clinic” we always take her to, but also so they can see that it’s not fun, there’s nothing exciting going on and get a real view of what their baby sister has to go through. I hope it helps make it real for them and help them understand the difficulties she has to deal with. They are such amazing kids and are handling all these curveballs life keeps throwing at us with amazing resiliancy. They are a constant blessing and I’m thankful for every day with them.

An unexpected blessing has been our friend Cassidy Savage who is 11 years old (oooh, I hope I got that right) and lives in Michigan. She emails Peyton regularly and sends her love and “Cassidy hugs”. Cassidy walked this weekend for a Leukemia and Lymphoma Society fundraiser with her track team and she didn’t even know what wonderful things they have done for our family. She said she was walking for Peyton. I’m so proud of her and the wonderful young lady she is.

With Love
—Anissa

Over the weekend we’d noticed a definite change in Peyton. Her mood was lousy, she was really tired and irritable, and she looked pale and had big circles under her eyes. This morning when I took her for treatment her blood counts were actually up, but the doctor explained that this was just effects of the treatment itself. It’s showing the wear and tear on her little body. That was hard to hear because I was thinking that her red blood counts were down and a transfusion would pep her back up, but this is nothing we can do anything about. It’s hard to be helpless and have no control over any of her illness, but we pray and we keep her spirits up the best we can.

This is Kathy, Peyton's social worker at the All Children's Hospital clinic

Her treatment today went well, it was a long day, we didn’t get home until 5:30, but she napped at the clinic and had fun there with the nurses and child life specialist. The Children’s Cancer Center and Junior League sent her the nicest package, a Disney Princess backpack with all sorts of Dora goodies, stickers and toys and fun stuff to play with, so it was great for her to have this big present to enjoy on this long day.

This is Ms. Teri, one of our fantastic nurses!

I had talked to the nurses at the clinic about her treatment and how I was upset by the fact that she has a port and yet she still has to undergo shots in her legs 4 days a week when she could be getting this medication by IV through her port. My feeling was that the port access should be done on the first day as it always is and then left in for the rest of the week instead of being taken out at the end of the day. That way, she just has the one poke and isn’t forced to endure the painful shots. That was one of the reasons for the port in the first place. We talked about the increased risk of infection if her blood counts are down; the port is a very vulnerable spot and the first to be attacked by germs and bacteria. But we did get them to agree to give it a shot with Peyton, they left her accessed today and hopefully it will go well so we can continue this less painful method of treatment.

This is Ms. Louise, another of our wonderful nurse angels.

Peyton has 4 more weeks of this chemo cycle, then two more cycles – each 6 weeks approximately – and that’s not counting any time when her counts are too low for her to undergo treatment or any time she might fall ill. So, roughly 14 more weeks of chemo to go and then she’ll have her radiation treatment. But the great news was that if she stays in remission, she’ll go into maintenance treatment after her radiation. It’s actually sooner than we had first thought. Maintenance will be 12 week cycles, and she’ll have oral medications throughout the two years of maintenance, but her clinic visits will be bi-weekly and then monthly. They said that during this period life begins to return to normal, that Peyton will be able to resume full activity and will begin feeling much better. Her hair will grow back during this period and a lot of the side effects we see will start to go away. So this was wonderful to hear, it was that bright light at the end of what has seemed to be a very scary dark tunnel.

I know my greatest fear right now for Peyton is a relapse, which would mean that her leukemia came back and we would have to start from square 1. It would also mean that we would have to undergo a much more intense chemo treatment and possibly look at bone marrow options. I pray for this not to happen, I hate the thought of having to go through this all again. We just keep positive that her spinal results will show no leukemia and we’ll be able to move on and into a happier phase of our lives.

Nathaniel is doing great, his mid-term reports showed straight A’s (except for penmanship, which let’s face it, not THAT big a deal) so we were super proud of all his hard work and thankful for the wonderful teacher he has, Mrs. Hensley. Rachael is just blooming at school, she thinks it’s an awful lot of work and she has decided that going back to pre-k might not be all bad, but she’s reading all kinds of books, she’s writing me little stories at home and is just doing fantastic with her classmates. We are so thankful for the two teachers we were blessed with this year. Mrs. Hensley and Mrs. Wade are both loving and supportive teachers and it’s nice to know that with all the upheaval the kids have been through the last year, they go to these two women who are a constant and encouraging hand in their lives.

Peter and I are doing ok. We’re tired, we’re overwhelmed at times, but we hold it together the best we can. We’ve been offered babysitting for nights out, dinners and tickets to Busch Gardens and we’ve haven’t been able to come up with a time when we can go yet. We’re hoping to take advantage of these offers soon, people want so much to help, and we SO much want to go. We really are looking forward to an opportunity to have some time together, it’s been hard on us, and we’ve rarely had a moment alone to talk about anything but the kids. But we love each other, and that’s a special comfort all it’s own, it’s the base of everything we do.

The fundraiser is still underway, we have been continually blessed by the wonderful responses and generosity. It’s just amazing and we’re so thankful.

With love from all of us
—Anissa

Holy cow! Can I just say Holy Cow!

Let me start by thanking God for all the wonderful blessings in our day to day lives. For all the emotional and physical hardships we've been through we have so much to be grateful for. Over and over we've thanked for the encouragement and concern of those around us, the prayer we've received and love that we've felt. People will say "I wish there was more I could do or some way I could help". You just don't understand that by lifting our spirits and letting us know you're supporting us, you're giving such a special gift to our family.

We kicked off a fundraiser this week through Tupperware that my mother is doing a fantastic job of handling. Thanks, Mom, I love you. We got a bunch of packets, drafted letters of explanation and thought we'd get the word and see what happened.

What happened is that within 3 days, all the books are gone, I have a list of people that I have to get more books to and calls and emais just pouring in from people who want to help and contribute. It's overwhelming and humbling and an answer to prayer and a sign of God's constant hand in our lives. When I get anxious and frustrated, someone will remind me that God will provide, and he always does.

For those wonderful people out of our area who volunteered to help, I had to hoark your books from Mom and she's ordering more to send you all. Thanks for waiting and offering to help!

We are thankful to every person who gives of their time to help us. There is no way to express our thanks.

—Anissa

Well, it could definitely be for better reasons, but Peyton’s got a week off from any chemotherapy treatments. Her blood counts are low and her ANC is really low, she has what’s called “neutropenia” which just means her ANC is really low. So, being neutropenic, she’s highly succeptible to infection, her body’s ability to fight off germs is dropping to all time lows. So, she has to wear face masks when we’re indoors with lots of people, outside she has a better chances of staying germ free.

She had a good time in the hospital. She felt great and didn’t really need to be there, but the fever watch continues. Overall she looks great and feels pretty darn spunky.

We were thrilled when she got the clear that her cultures weren’t showing anything growing and her friend Adelaine came for a visit. They shared a plate of spagetti, they got their fingernails and toenails painted and we all went to the playroom and let the girls run wild. They were so sweet together and it’s great to have a special friend that she can play with.

The Tupperware fundraiser stuff arrived, so booklets are heading out and into the hands of those who’ve offered their time to share the books with others and gather orders. Everyone has just been wonderful and generous and we’re hoping to have a successful fundraiser. Peyton’s first bill for a month’s worth of chemo came in the mail and it was 11,000 dollars! That’s not counting her hospital stays that bills have yet to arrive for….scary, huh? We’re hopeful that insurance is going to take the bulk of it, but we’re unsure of exactly how much is our portion.

Adelaine’s parents need our prayers and support, as they’ve got financial difficulties that are forcing Angela to take a job. It’s an amazingly stressful full time job just caring for your sick child, but she also home schools her two boys. I hate that she has to get a job and take that burden on as well, but they will do what they need to to get through this situation. I’m hoping that the fundraiser goes well so that we can arrange one for Adelaine’s care as well, it takes a huge emotional and financial toll on a family.

Thanks to my dear friend Chris for the wonderful dinner she brought us tonight and I have to tell you that if you ever get sick and need a meal brought….make sure you ask Chris to bring the caramel brownies! FANTASTIC!!

Thank you to all who called and continue to send encouraging emails, letters and packages. They bring so much happiness to Peyton and helps keep her smiling and joyful.

Thank you to my sister who sent the most wonderful book of Bible verses, especially picked for a mother to find exactly what she needs for the day she needs it. Today’s verse for me was this:

I can do all things through Christ which strengthens me. Philippians 4:13

—Anissa

All those quick prayers must have done the job because as soon as we got to the hospital her fever disappeared and she has felt jolly fine ever since. Her lethargy from Thursday morning is gone along with the fever. They have to do blood and urine cultures any time she gets a fever, so regardless, they were glad that we followed protocol and called her fever in to the oncall doc. I feel a little silly being in here with this extremely bouncy and chatty little girl, who is still the healthiest sick kid I've ever seen. But this is definitely something they stressed, ANY time she gets a fever over 101, we HAVE to take her in.

Her ANC continues to drop so her vulnerability to infection is rising, so we can expect more visits like this in the future. I guess it was a good practice run in getting the bag packed and getting on the road as quickly as possible. They rush rush rush you and then you wait….but such is life. She's got great nurses here and we're seeing a lot of familiar faces.

We're looking forward to heading home on Sunday as she has been fever free for 24 hours and shows no symptoms of anything else. They're keeping her under watch for UTI because of some pain she'd had earlier in the week, but we won't know any results until Sunday.

If her blood counts and ANC are still low on Monday they will hold off her chemo treatment. Today her ANC is 400 and they said if it was below 750 they would hold the chemo. So, maybe we'll get an extra little break in there.

Whatever brought her flash fever on, I think so many people started praying immediately, that it just ran out of her little body. God is continuing to show his care and love for our baby in her ability to fight this battle with a smile on her face and a song in her heart. As her dad and I each held a hand she squealed "Swing me! Again! Again!" through the halls of the hospital. She's so joyful and I am so thankful to have the people in my life who are teaching me every day to be a better person. We've been blessed by the Lord and I don't take any of it for granted.

I miss Nathaniel and Rachael, their Grandma Sharon got to spend the day with them at school for Grandparents Day and then she took them to the beach and just did lots of fun stuff with them. Although I miss seeing them it's just so good to know that they've been loved and cared for and I don't have to worry about who's taking care of them. Thank you to my wonderful mother-in-law who continues to make this journey with us and back us up whenever we need it, with her prayers and her actions.

My parents are coming to visit tomorrow and it will be their first chance to visit since Peyton got sick. Unfortunately, my dad has serious heart problems that leave him feeling less than 100% most of the time and he's not felt up to coming. Please say an extra prayer for him, strengh and health for him and wisdom for his doctors. But we're looking forward to a great visit with my folks. I know the kids will be thrilled to see them and they will help keep them occupied while Peyton and I are stuck down her at the hospital.

Thank you for all the emails and calls, keep the prayers rolling because they work!!!!

—-Anissa

Psalm 33:22
May your unfailing love rest upon us, O LORD, even as we put our hope in you.