Hope4Peyton

Hannah Deal is a child with a brain stem tumor that I’ve asked you all to pray for repeatedly.

The prayers are so desperately needed right now.

Her family has been told that there is nothing they can do. The only treatment they could opt to do would give her time, but it would be so harsh and her body so weakened, there would be no quality of life for her. So, they are taking her off all treatment so that they can enjoy the time that she has left.

They have known that Hannah's time was slipping away, but the family has never given up hope. Lisa will be going to a funeral home to make arrangements for Hannah so when the time comes they will not have to worry about it.

Please lift this family up in prayer, ask the Lord to give them the comfort, peace and strength they need to get through this time. I don't know what else to say, my heart is just breaking for my friend, she is tucking away each precious moment with Hannah, making the memories that will have to be held in her heart forever.

Please take a moment and go to her website and just leave a few words of support and prayer for the Deal family.

f.r.o.G.
—Anissa

The first week of school isn’t over yet and we’ve had :

1. One lost spelling book
2. One lost pair of socks
3. One scheduling mishap
4. 3 meetings, 1 clinic trip, 1 chess champion and a partridge in a pear tree

The lost spelling book was found pretty quickly, the socks are gone for good, I’m sure, and the scheduling mishap was resolved pretty easily.

The kids are getting into the groove of their classes, they are enjoying a fairly easy week of adjustment. I won’t even candy coat this one…Peyton is LOVING it that the kids are back in school…. loving it! She’s been so happy with just having me around, we’ve bopped each morning to a meeting of some sort, then we come home for a snuggly nap (which we’re both enjoying) and then we feel up to picking up the kids so that they can rowdy things up again.

I went to pick up the kids from after school care and Rachael came right out, but no Nathaniel. We waited…still no Nathaniel…interesting. I finally found him in the gym, with a veritable mob of 4th, 5th, and 6th graders, trying out for volleyball. I had no idea he was going to do that, in fact, I had no idea there were tryouts. He did really well and I’m sure if it was just a team of 4th graders he would be a shoe-in, but there’s a big size and strength difference between 4th and 6th grade, so I’m trying to ease him mentally into the idea that he might not make the team this year…just based on his body mass index. He told me he’d be upset, but understood…especially because “those 6th graders hit that ball like a rocket!” We talked about remembering to be thankful for all we do have, that he’s healthy enough to try out, that he has two legs to stand and play on, and that he is able to go to school and exercise his brain. That reminder helped ground him on it a little bit…. he is still 9, after all.

He’ll be finding out if he made the team tomorrow before lunch. Pray that he makes the team, and if he doesn’t, pray that he is able to take it in stride and be thankful for the opportunity to try again next year.

Rachael is just a bundle of giggling energy at school. People always say the same thing to me about her, “She has the best laugh”, and she really does. When she laughs, she just sparkles. She and Nathaniel went to chess class after a quick dinner and we had to RUN to make it on time…. just to find out that it had been set back a half hour so the kids were way early. Nathaniel was on the winning team, he’s serious and intent and focused, and just thrives on the competition. Rachael is busy gabbing with her classmate Brianna from school who is also in the chess class and they are playing this leisurely no-pressure game. I hear her saying “That was a good move, Brianna, and your hair looks really pretty today.” She just cracks me up with her kind little spirit. Nathaniel got a ribbon because his team one first place today and Rachael didn’t get one, but she told me that she was going to keep practicing because she wanted lots of ribbons…”enough ribbons that I can fill a purse with them.” We all have our own motivation, I guess.

They are both eagerly looking forward to their first tournament that is offered in October. Coach T let me know that everyone who participates gets a ginormous trophy, so that’ll be worth it!

After all that fuss about being bald and looking like a boy, Peyton’s got a permanent 5 o’clock shadow on her head! It’s very faint, and you have to look REALLY hard, but I can see the little hairs that are working to grow. This is so exciting and it feels like the barest peach fuzz on her scalp. This should be THE hair…the hair that she gets to keep forever!!!! I’m still crossing my fingers on the curly hair because it’ll be adorable, but any hair at all will be great. I’m hoping that it comes in nice and fast over the next year so that when she starts K4 next year she’ll have it long enough to wear some “hair pretties” in it.

Ahhh, it’s good to make plans!

Please don’t forget to keep the Cure Kids Cancer Challenge, benefiting the Pediatric Cancer Foundation, on September 29th in your prayers for a successful day and that the Lord will bless us with kind hearts, good weather and just an overall celebration of the lives of all these kids.

Please keep Sydney Sims in your prayers. She has been battling Neuroblastoma for 3 years and when she relapsed in the summer, it was devastating. Over the summer she has undergone a surgery, multiple rounds of chemo, lost another heedful of beautiful hair and just been through so much. Her latest round of scans in NY proved to be disheartening, I don’t fully understand all the “lingo” for Neuroblastoma, but it appears that the cancer could be spreading again or it could just be post-operative trauma to her body. I am praying that it is the latter, but if it is not, we NEED to keep the prayers going for this wonderfully spirited young lady and her family.

And we want to give the Lord HUGE thanks for Allie Duckworth. Jacob Duckworth was a boy in our area who passed away from cancer and his amazing family just adopted a little girl from Guatemala. They flew down this week to bring her home, to add a little pink to a family that has only known 4 sons. For a family who has suffered so much and been through such a time of tremendous loss, it is just awesome to see the joy that they are experiencing with their new little girl. We pray for a safe trip home, and a smooth adjustment period for Allie in her new home.

f.r.o.G.
—Anissa

I got the kids up at what they felt was the crack of “what the heck are we doing awake” o’clock. They grumbled, they moaned, Nathaniel stuck his head under the pillow and burrowed down in the blanket…but they did all get up, get dressed and on the road on time. Nathaniel actually said "Mom, we could have slept for like 15 more minutes, you know"…THAT is my child. At school, it was exciting to see all the kids rambling around the hallways and the sad mom and child separations. I actually felt this little bit of guilt that I didn’t feel bad that I was leaving them….however, I felt this wonderful bubbling of sheer glee. Yes, I stood amongst the moms sobbing because their kids were clinging to them and watched my kids take off without a backwards glance and didn’t let the door hit me on the back on the way out.

Peyton had clinic, but it was far enough away for her to whine her way to a plate of scrambled eggs….which she didn’t eat. She was so hungry, but as soon as I sat the food in front of her she claimed a boo boo tummy and wouldn’t take a bite. There was a little boy in the restaurant, maybe 18 months to 2 years old-ish, and he kept saying “Look at the baby!” After about the 4th “Look at the baby”, I turned to see this baby….there was no baby. In fact, the kid was pointing at Peyton. If I hadn’t turned, she probably wouldn’t have thought twice about it. But I did and she realized that the boy was talking about her. She was TICKED! Face turn red, breathing hard and eyes narrowing mad…staple that kid’s nose to the floor mad…”I am NOT a baby!”

I had to explain that he was little and thought that because she didn’t have any hair she was a baby. We went through the whole thing about bald babies, and how he WAS a baby and didn’t realize the difference. It made her sad, which was worse than being mad. I guess I thought we’d get through this without her really being bothered by the lack of hair, but this really tweaked her.

She had her finger poke at the clinic and her counts were decent. Her ANC is at 800 (fair), her hemoglobin is 9 (so-so), and her platelets are 200K (that’s good), so we don’t have to back for two weeks! Maintenance rocks. We had a nice time visiting with Nikki Hawkins and her mom and I realized how much we miss seeing our friends from the clinic….how bizarre is that? I miss the clinic. But we’ve made friends there, and for all that she’s had to endure there, she’s very happy when she spends time with the wonderful people we’ve spent so much of our last year with. Tonight she took her 5 pills of Methotrexate and her nightly 6MP like a champ. When we go back in two weeks she’ll get her port accessed and her monthly dose of Vincristine and we do our 5 day pulse of steroids. But that’s two weeks away and we’re going to just enjoy the next 14 days.

Now, to add to Peyton’s emotional matters WAY worse, when we went to pick up the kids from school there was a little girl at the school who drove Peyton’s day straight into the ground. She ran up behind Peyton and started patting her on the head. I grabbed her hand and put it down by her side and said “She doesn’t like it when you touch her head like that.” So the kid stuck her face about a quarter inch from Peyton’s and made a face at her. Peyton buried her face in my lap, I was about to pick up this kid and drop kick her across the parking lot. THEN the kid says “Is that a sister or a boy?”….which in itself is a cute question. But with her pink shirt, her overall dress, her pink socks and pink ballerina shoes….it should have been somewhat obvious. After having dealt with “Look at the baby” boy, she was not going to deal with the questioning of her gender.

“I am a Peyton! I am a sister!”

Oh she was about to come out swinging. I am not for yelling at other people’s kids…well, I guess not strangers’ kids….but I know her mom and I was tempted to tear this kid a new one. But she’s 6. And she completely oblivious to the emotional trauma she’s causing Peyton, whereas I’m sure I’d feel more than a twinge of guilt for raking a 6 year old over the coals. I simply pulled Peyton into my lap and let her bury her face in my shoulder…she was so close to crying and I was just praying that the kid would GO AWAY.

Luckily, Nathaniel and Rachael arrived and we made a quick escape. I took them for ice cream, but mostly to try to cheer her up. She bounced back from it, but at prayers tonight, she prayed that “I am not a baby or a boy. I look like Peyton.” I don’t know that she worded it right, but I know God got the gist of it and I pray that her little feelings are back to new tomorrow. We go to the Children’s Cancer Center tomorrow, where she’ll get to play with her friends and spend time with kids who don’t blink twice at her little shiny head.

Now I’m starting to wonder if I should talk to the school about talking to the younger classes, especially the little ones who don’t know Peyton and talk about her and let the parents know what’s going on. I mean, she’s not actually a student, but I don’t want her teased and she’ll be there every day when I drop off the older two. Obviously she’s not as unaware of the comments as I’d hoped.

This day hurt a bit. I just pray that the Lord provides the comfort for Peyton’s bruised spirit and the patience for me not to react when I know she’s been hurt.

I just want to thank Karalynn for the sweet t-shirt for Peyton, they kids all loved their gifts, but when I told her that it said “Someone who loves you..” on it, she immediately put it on and wore it the rest of the night. It could not have come at a better time. She needed that extra little bit of love today.

I also want to thank Brenda, a wonderful lady who provided gym bags with treats and gift cards for the kids to purchase school supplies.

What an army of blessing-givers we have and we are so thankful for all of them.

f.r.o.G…fully relying on God
–Anissa

Wow, again with the fun week! I have to say that our time was more relaxing this week than with Give Kids the World. We had nothing to accomplish and nothing planned to do, so that made for just good down time. The kids wanted to swim as much as possible, so holding in account the weather, we were in the pool as much as we could be.

It’s going to be terribly hard this next week or two, getting the kids into the swing of school. It’ll be about getting them back on a sleep schedule, up every morning, and the work they’ll have to be doing. I’m not sure which I dread worse, the load I know Nathaniel’s taking on in the 4th grade this year or the actual work Rachael will be required to do compared to the easy go of it in kindergarten. My hopes are that we will transition smoothly back into school mode and I’m confident that the kids will rise to the challenges ahead of them. Please just add a little prayer for all the kids that are heading back, that they will find friends, that they will be receptive to the teaching, and that they will appreciate the gift that they have to be healthy and able to attend. Yeah, that’s asking a lot. Perhaps I should modify that…..please pray that my kids don’t lose their gym clothes, they don’t have to be moved to a desk in the hallway and that we make it through at least the first week without a “red light”.

Why is it whenever I warn the teachers that Rachael’s a “talker”, the teachers always sort of laugh and roll their eyes at me? I think my mom would know the answer to that one!

We only managed to get to the beach ONE day of our entire condo stay. The pool was 10 steps away outside our door and it was just too easy and convenient to jump in the water….I don’t know about the rest of the world, but to me it’s a LOT of work to bundle everything up for 3 kids to go hang on the beach. Penny Hawkins, Nikki’s mom, her friend Cindy and their collective 5 kids came down to spend the day with us and we did finally make our beach trek. It was awesome, the kids had friends to play with, I had friends to talk to, the kids LOVE the water and sand and it was just a celebration of what it means to live by the ocean.

I took a moment to think about the fact that the last time I was on a beach was just days before Peyton’s diagnosis…days when she had cancer in her body and we had no idea. I had to go back and look at the pictures and remember that the last time Peyton played in the sand, she had a full head of hear (full for her, anyways). We were such a different family then, my time with them was so different….it gives me the chance to reflect on the ways that cancer has been GOOD in our lives.

The mom’s weekend retreat started with just one mom, Carmen, coming down on Friday. We went out for a bite to eat after Pete and the kids left, we bounced around the beach and went to bed too late….I guess the grown up version of a fun sleepover, the only thing we didn’t do was call up boys and hang up on them. Then 7 more moms showed up on Saturday and we had a full house. Kay Bertoch, my future co-mother-in-law, as I like to think of her (since I do have a mental arranged marriage between her son Cody and Peyton) and Dana came over with bags and boxes of the most incredible Italian food for us for dinner. THANK YOU, Bertoch family! We tried and tried to get them to stay to eat with us, but they just dropped the food off, spent a few moments chatting and then hit the road to watch the Buc’s game.

And we chowed.

We chowed hard.

It was good stuff.

We just spent the rest of the night talking….sometimes about cancer-related stuff, a lot just about our lives. We played a fun game….where we learned that “a square can be a rectangle but a rectangle cannot be a square”…I kid you not that we finally had to get out the computer and google whether or not that statement was true. It’s true, but I know some are still doubtful.

It was truly just a magnificent time to spend together in getting to know each other better, we had two of the newer moms come, and it was awesome to get them involved and give them a chance to see that we’re not depressing and how important that get-away time is to just recharging your spirit. We missed a lot of our friends who weren’t able to make it, but we had a full house anyways.

We’re already planning our next get-together, game nights and grill outs…MaryAnn from the Children’s Cancer Center made the comment that in 15 years she hasn’t seen a group that is as tight as ours is. We are not just a support group anymore, these are friends. I think that taking the time to get together outside of the CCC is so important to building those relationships. I truly hope it’s a habit that all the moms stick with, the ones who are in treatment, and especially the ones who are new and need to understand their never alone in what they’re going through.

Some moms left, but there were 5 of us to sleepover and they were so awesome to get up (I was the last lazy bones up and moving) and helping me get cleaned up so that we could leave today. I’m sad to see the week over, we have enjoyed our time to much, but I’m looking forward to getting home and back into my routine.

Monday is the jump day for school, I know the kids are excited to get back with their friends and to get involved in all the stuff….sports, dance, chess…it’s crazy. After we drop off brother and sister to school, Peyton and I have to boogie up to the clinic to check counts.

Back to a schedule!

f.r.o.G…fully relying on God
—Anissa

ps….for anyone who hasn’t had a chance to see the videos I made a while back, “The Face of Childhood Cancer” or the “Mayhew family video”, I finally figured out how to embed them on the side…they’re under the “Videos and other jazz” link…aptly name, don’t you think?

p.s.s. I also updated the photo gallery with lots of pictures of our day at the beach with the Hawkins family.

For whatever reason, I love to hear my kids mispronounce things. I try to teach them tongue twisters, I let them listen to songs like “supercalifragilisticexpialidocious” and then I just throw words at them that I know they’ll mangle. We laugh ourselves silly because the more they laugh the worse it gets…and then we laugh some more. On our way back from the Children’s Cancer Center this week we got on the kick where I told them cancer terms, names of different types, medications, yada yada yada….and Nathaniel just stared at me like I was making this stuff on the fly…like I could just pull the word Rabdomyosarcoma out of my hat.

I finally gave up, he decided I was terminally insane and we let it go at that.

I don’t even remember how we got on the subject or why I was throwing spelling words at him….I mean, it is summer after all…but I told him to spell Chrysanthemum.

“Stop throwing those cancer words at me, Mom!”

“It’s a flower, Nathaniel.”

“Well…whatever…little words, Mom…little ones….stop showing off.”

I would also like to let everyone know that DAILY Nathaniel checks his armpit for the MARK OF MANHOOD. Every time we get in the truck he pops down the vanity mirror, pulls up his shirt and inspects for a random stray hair…heaven forbid there be a dog hair stuck to the inside of his shirt one day, I’m sure he’ll demand the car keys and an apartment. I’m tempted to glue some scrap pieces of yarn to his pit and see what happens when he wakes up one day. Pete and I have even tossed around the idea of just using a Sharpie to draw in some armpit hairs so he’ll let it go.

For this I shared my body for 9 months. I love being a parent.

f.r.o.G.
–Anissa