Hope4Peyton

Yesterday’s clinic visit brought good and less than good news. Peyton’s platelet count and hemoglobin were both really good, but her ANC (that lovely number that tells us her ability to fight off infection) dropped down to 500. 500 and lower puts her in risk range for getting sick, so we’ll have to take a little more care to keep her from anyone openly sick. She got her big weekly dose of Methotrexate last night, so her counts over the next week could continue to drop. Her next clinic visit is her tri-monthly spinal tap…JOY!

Of course, the way it works out, her spinal tap day falls on the same day as her consult with the physical therapist. I had to make that appointment many weeks ago, so there is no way I’m missing that visit! So, we’ll do her spinal in the afternoon. That makes it a little inconvenient because she won’t be able to eat after breakfast since they’ll give her the mild local sedation and vomiting all over the doctor is highly frowned upon. She’ll have her spinal, her Vincristine via port and then she’ll start her 5-day pulse of steroids.

Monday night we got the chance to get with some awesome friends to paint tiles that will be used as awards for the Cure Kids Cancer Challenge. Can I just tell you that there are no words to explain how sweet these tiles are? Some are just a mess, some are so delicate and perfectly drawn, some are by the cancer kids, some by siblings, some by parents….they are perfect in that they represent the whole family that is affected by pediatric cancer. They are beautiful and I can’t imagine how touched the recipients will be when they are handed these personalized gifts.

Today Peyton and I trucked on over the Children’s Cancer Center for our weekly Little Tales fix. There was both joy and sadness in the day. Hannah continues to worsen due to the growth of her tumor. Her parents are making the choice on a shunt. The options are that it will either aid in making her time better or it’ll make it a lot worse, there is no middle ground. Please keep the Deal family in prayers as they make these choices that will give Hannah not only quantity, but quality of life through her last precious days. As we were getting ready to leave, I had the chance to play with Hannah for a few moments and it broke my heart to see the changes in her from just a few weeks ago when we planted her garden. But she still lit up and smiled and giggled when I played peek-a-boo with her and that just made my heart sing. Even if her time is too short, and we anticipate the heartache of saying goodbye to her, to see her laugh and love today is what truly matters.

I ask you to add prayers for Baby Leo and for Maddie Bridges. Leo has Neuroblastoma and is such a sweet little fighter, just 6 months old. His last scans showed a shrinkage of his tumors, but not as much progress as his family had hoped. They remain positive and strong and we pray for a treatment plan that will be effective in fighting his cancer. Maddie is a 2 year old with Rhabdomyosarcoma, she is newly diagnosed and just had a surgery to remove tumors at the base of her neck. She is so precious and shy and I just ask for prayers for her safety and treatment, but especially for her mom. Mom is going it alone as a single mom with a 2 year old with cancer, and a 3 year old. Her job is giving her a really hard time and is so unsupportive. I pray that their hearts are touched with compassion and that those in charge see the need to reach out to this family.

If you have yard sale stuff (good stuff please!) a group of us moms from the Children’s Cancer Center are going to throw a quick yard sale to benefit the Bridges family. I’ll take what you have to give!

Kiss your kids, call your mom, love your friends and family, get down on your knees and thank our Lord for each blessing that He bestows on you. No matter how tiring, frustrating, irritating, seemingly pointless your day has been…it a blessed day!

f.r.o.G…fully relying on God
–Anissa

As my mother loves to remind me, one of the first phrases I learned to translate was to tell her that the people at the orphanage would tell me to “be still, go to sleep”. We were laughing about it tonight. It seemed to be so mean to say that to a little one, tell them to just be quiet and go to bed.

And then I had kids. Now I feel like I should send those orphanage people a fruit basket or something.

Rachael’s school gives each kid an agenda where all her assignments are written for the day and any communication between the teacher and parents can take place. Three days this week I got a note from the teacher about Rachael talking during lessons, Rachael talking during seatwork, Rachael talking during Bible….basically a great big “Your kid won’t shut up!”

Again, my mother laughs. I tell people that I got the children that my mother always wished I would. I have one that’s too smart for his britches, one that can’t keep her mouth shut, and one with all the crazy medical problems…I’m raising 3 me’s! I told Rachael’s teacher at the very beginning of the year “She’s a talker, she loves to talk….she comes by it honestly, but she’ll have trouble with that”. What can I say? At least I didn’t pass her some weird random spitting gene, talking we can work with.

We have had an insanely busy week!

It has just been one thing after another and it never seems like there’s enough time to get everything done. So there’s a lot of things left undone at this point.

We are creeping up to the date of the Cure Kids Cancer Walk, less than two weeks away! It’s amazing to see what people with a passion can get done when they set their hearts and minds to it. We got this started in July and now just a few months later we are really looking forward to a hugely successful event. We are well onto our way to making our donation goals, so we’ll just have to raise the bar for next year.

Tomorrow night is going to be such a special night. A place called the Pottery Patch has donated tiles for us to use as awards and sponsor acknowledgement. We are going to have a bunch of our cancer kids come in for a painting party and they are going to decorate these tiles…those are going to be the best little handmade, personal trophies ever! It’s going to be a fun time giving these kids paintbrushes and just letting them go wild….I hope the Pottery Patch is prepared.

Peyton has her clinic visit in the morning, a simple visit for counts just to make sure everything is on the up and up. I would think we could just about skip it because if her boundless energy level and happy sassiness is anything to go by, she’s fine. When she’s feeling so good and she looks just wonderful, it’s hard to think that this kid is still in cancer treatment. But she is and I try to never forget that without these medications and endless trips to the clinic, she wouldn’t be here in our arms to tell “be still, go to sleep!”

We were treated to a fantastic day by the Pediatric Cancer Foundation today. We got to spend the day on the surface of the sun! No, really, that’s what it felt like! What we did was get to go to the Buc’s first home game of the season. We were front row in the endzone and it was an awesome game. The Buc’s rocked it! But it was so miserably bright and hot, the kids were melting all over the place. We were there with 4 other families and we kept taking the kids up to sit in the shade because they couldn’t take it. We finally left at the beginning of the 4th quarter and were so thankful to sit in the air conditioned car that it just solidified my belief that we are pampered whiners….but we’re air-conditioned, pampered whiners, so that’s all I’m worried about.

Holly, David, Samuel and Conner Wirth

The king goofball, Nathaniel

Peyton prepping for the cannon blast from the pirate ship every time the Buc's scored

Carlee and Debbie Vessel

Holly and Peyton, best of buddies

Rachael and Sam Lee, sweaty and loving it

Kevin, Joanne, Samantha and Matthew Lee

Rachael trying to beat the heat…good luck!

It was such a fun day and the friends we went with are so much fun to spend time with that made it extra fun. Once again, I am blown away by the blessing of friendship that we have been given through Peyton’s cancer. Thank you to the Vessels, the Wirths and the Lees for a wonderful day in the boiling hot Florida sun! And a HUGE thank you to Davin Johnson, the Buc’s player who donated our seats and the PCF just for being who they are.

f.r.o.G.
–Anissa

ps…This was Peyton's steroid snack gross-out…..a chunk of banana dipped in A1 steak sauce…ugggg

I got a spam email and I peruse them all….I’m a sucker, what can I say. And this one was pretty common….I have to read it, turn around 5 times, hop on one foot and then forward it to everyone I’ve ever met or I won’t get good luck, a windfall of money or that surprise visit from George Clooney. But one line of the email really stuck with me, it sort of simply summarized how I’ve felt about the past 14 months. The phrase was “God doesn’t call the qualified, he qualifies the called”. We have been so overwhelmed by the blessings brought to us through Peyton’s cancer, we would do anything to have her never to have gotten sick, but because this is the path the Lord led us down, we have had the chance to really grow from it. I never dreamed that this would happen to our family, and I never thought for a moment that we would be able to cope with it. Yet, we have. God has been so good in providing for our needs, emotional, physical, spiritual and when we’ve needed it most, financially. You can never prepare yourself for this kind of storm, but we have been able to weather it. I just thank every person who has blessed us with support, encouragement and prayer. You are a huge part of the reason we have been able to face what life has brought.

I’m so pleased and relieved to announce that we have successfully made it through another round of steroids with all body parts intact, no serious mental abuse and only one new craving. My half-Korean baby likes Cuban toast…and Cuban coffee…that makes for an interesting day, let me tell you. She’s feeling so much better, the swelling is already subsiding and her mood was 100% better as soon as Tuesday. SWEEEET!

I would love to tell you that she had a great day yesterday, but I wasn’t with her all day!!! Grandma came and got her early in the morning, after a quick breakfast of Cuban toast and milk (I wouldn’t give her to Grandma hopped up on coffee because I may want her to take Peyton again some day). She spent the whole day with her Grandma and I spent the whole day alone.

Can I just tell you that there are people in the world who are very uncomfortable with being alone? They just don’t like it. I’ve learned to appreciate my alone time. I shopped alone, I browsed books alone, I’ve been known to eat alone in restaurants and to go to movies alone. It’s beautiful quiet time. I truly think that people who don’t appreciate alone time should be beaten soundly and given a weekend with at least a dozen kids….kids on steroids…kids on steroids and a healthy dose of espresso.

I got a lot accomplished and it was so exciting. I went to the bank, the consignment store and to Kmart…hey, don’t knock it…that’s big stuff around my house! I found these boots in the consignment shop and I just knew that Peyton would fall in love with them. I knew she's wear them when rain boots just aren't appropriate and the colors would clash and they had no business being work with whatever outfit she has on…but they are just so darn cute and she is in LOVE with them, therefore I love them.

The first picture pose I call "Thank you, thank you very much….Elvis has left the building."

There are some shoes that you will love and then there are shoes that will love you back…I think these are those shoes.

This morning I had to get up at an unlawful time and get the kids ready for school early. This was a good thing as I found out last minute that Nathaniel had forgotten about half of his homework and the other half was left at school….breathe!…so he needed the extra hour to get his work done. Peyton and I went to Lithia Spings Elementary where we the Pediatric Cancer Foundation is having a coin drive. Last week Bevis Elementary raised almost 1100$ in two days, so we’re hopeful that we’ll match or exceed that at Lithia. We weren’t able to get there to help at Bevis, so it was too cute to see Peyton this morning. She had her little red bucket and she would practically crawl into people’s cars (we did the coin drive in carline drop-off) and who could help bdut dig all the change out of their seats for her. She’d stand there and just grin and wave at all the cars and yell “good morning” at them…I’ll bet we get a lot of change tomorrow.

We got the news that we are going to get the chance to attend another Buc’s game this Sunday! The Pediatric Cancer Foundation got tickets for us to sit in the end-zone again for the Bucs-Saints game. The only draw back is that it’s the 1:000 game so the heat will be atrocious and the sun unbearable, but we’ll take hats and maybe an umbrella for the kids to hide under. There are about 5 other fun families attending, so it should be an absolute hoot.

A request was put in for some information about Pete and me.

Pete and I had the chance to engage in that activity that brings us closer together, really solidifies our relationship and allows us to reconnect in our marriage. And we did it twice!

We played Scrabble. What were you thinking?

We were talking about a family I met and I was telling him that Jammie has two little girls with names that are the names I always thought I would name my daughters. I have two daughters now and neither bears those names. Maddie and Hailee.

“Hailee?”

“Yeah, I loved that name. I just loved Hailey Mills!”

“Like the cereal?”

“Hailey Mills, the actress? The Parent Trap?”

“Oh…not the cereal?”

“That’s General Mills, you moron.”

It’s funny because I get to threaten Pete that whatever dorky thing he says is going straight on the blog! In fact, people will start to say things and then they look at me and say “don’t put this on the website”…like I’m their personal youtube or something.

Pete and I met online, we were married a little over a year later. Pete works in IT with Verizon….and yes, he could probably fix that problem you’re having with your computer and no, he can’t fix your cell phone. He works way too much, he loves football and he LOVES football. He’s a great husband and a fun dad, he sings in the shower, he lets the kids push him out of bed and he is the funniest guy I’ve ever known.

Someone asked me what I kinds of work I do…well, I’m one of those people who have done a little of everything. I’ve been a bartender, delivered pizzas, a secretary, made lots of lattes, threw newspapers, worked in IT, waitressed, made websites, did graphic arts work, and I was last doing craft service (a sort of catering) in tv production for commercials and tv shows and whatnot….I am a jack of all trades, master of none. If anyone knows of a job that requires these skills, let me know!

As Pete likes to quantify our relationship “we are retarded for each other”. It works.

f.r.o.G…fully relying on God
–Anissa

I told someone this morning that I would take hungry over grumpy any day of the week as a steroid side effect. Apparently I spoke too soon.

As soon as the pudding episode passed, we took the kids to school and went to Cracker Barrel for our feast of much happiness. But by the time we got home from CB she was broken. Her tummy hurt, her legs hurt, she needed to poop, she was tired, but didn’t want to close her eyes…it was terrible. She just cried all afternoon, she was a mess. She did finally perk up for a while later in the evening, but she went to bed sad and mopey. It was the strangest thing, she looked normal when she went to bed Sunday, but Monday she woke up all swollen and little pot belly. Like overnight she was 6 months pregnant. I do love how she rubs it and grins though, she digs the belly.

We have Lil Tales tomorrow morning and I hope that she feels better and is able to enjoy her time there. It is always a good place for her and she usually has fun, so I’m hoping it will lift her heavy little spirits.

I am not looking forward to this every month, for either of our sakes. Through the summer there didn’t seem to be a lot of effect from the steroids, but I’m thinking that it is one of those things that will just continue to build up in her system and knock her down each month. I’m praying for her to feel relief from the side effects soon and for her little body to fight as hard as it can.

We had beautiful smiles and laugher on Sunday so I’m waiting for those to return soon. Please keep her in prayers as she copes with all the emotional side effects of what her body goes through, that’s almost harder to watch than the physical. I know in my heart that the low counts and the aches and pains are from her chemo doing their jobs but when she cries and cries and just curls up in misery, it breaks my heart. She is such a happy girl and to see her broken down like this hurts.

Pray I get to bed NOW and sleep like I should be.

f.r.o.G…fully relying on God
—Anissa

Steroids have been creeping up on us and yesterday was her last dose, but like so many of her meds, they take a while to hit their peak. Last night she was up at 3 and then again at 5, hungry and grumpy. I mean, if you’re going to be awake at o’dark:30, shouldn’t we at least have a smile? She ate ravenously both times and then went to bed moaning because her tummy hurt. I’m dosing her with Zofran, her nausea medication to fight the effects and hopefully she’ll be able to have a good rest of the day.

Because of the night-time buffet, I woke up late, and getting the kids ready for school was a RUSH. I looked over at Peyton and noticed that she had this big black scrape across her nose and cheek. Ok, was I so out of it during the night that I missed her falling down and smacking her face? And how did I forget the howling that surely accompanied such a blow? I looked at her and touched it and she jerked away from me, complaining that it hurt.

I told her to get a wipee so I could clean it up and get a good look at it. She brought me one, crying, and told me to be “soft and gentle”….her instructions for anything she thinks might hurt. I, softly and gently, started wiping at the scrape and she melted down in tears and cries of “That hurts, mommy, that hurts!” But I held tight because as I was wiping, it was disappearing. In fact, the more I wiped, the “terribly painful scrape” was coming right off.

I sniffed the wipee.

Chocolate.

“Peyton, did you get up and eat pudding this morning?”

She took one finger and swiped it across her nose and then stuck it in her mouth. With a big grin she said “Yeah”.

“So, it didn’t really hurt when I wiped your nose?”

“No, but I thought it might.”

Well, as long as she prepared!

I see new grey hairs DAILY.

She also threw her binky in the trash this morning when I told her she had to get rid of it to qualify for “big kid” school. She also announced she was going to donate her binkies to the clinic. That lasted about 9 minutes and she wanted one when we dropped off the kids. Baby steps. We went by the preschool classes, and stopped by to see our favorite k-3 teacher who would be her teacher if we get her in school this year. They talked and I could just see her eyeing the kids with their big backpacks and lunchboxes, coloring and playing and I see her little mind ticking away. Very quietly, the binky disappeared from her mouth as we walked away. I think that we’re making progress.

I have a house that is so badly in need of cleaning that I’m considering just renting a pressure cleaner and working from the inside out. There are many many full hampers of dirty laundry just waiting for my attention, there are projects to be completed and things to be done, but my very tired behind is headed straight for a nap. I’m exhausted and if I’m going to be of any use to the kids after school when they come home with their schoolwork, I HAVE to get a few zzzz’s.

f.r.o.G.
—Anissa