Hope4Peyton

I couldn't quite think of how I wanted to put together my post for Mother's Day. Then I started getting all these emails. Emails about what it means to be a mom, what the "mom" job entails, why moms are so important. And what I've come to realize it that we are SERIOUSLY underpaid, moms! So now I get the chance to just gush shamelessly about the moms in my life.

For my mother, the woman who chose to be my mom, to take in a child when she could have had more of her own. She is special. My mom has had to deal with my teenage years, my years of rebellion and limit-pushing, she's shared tears for me and with me. She's been there for the births of my children, holding my hand, comforting me through the blinding pain and letting me know that "hey, women have doing this for years, suck it up and get my grandchild out here." When my kids have grated on my last nerve I've called her up to hear her laugh….yes, I've got the children she always prayed I'd have. She has loved me no matter what I've done, said or gotten myself into. She's become my friend, my rock, a shoulder I can turn to when I think I can't do this mom gig anymore. I thank God that He chose this woman to pick me out of many to become my mother, and I'm so endlessly thankful that she answered the call. I wouldn't be able to be the mom I am today if I didn't have you. I love you, Mom.

For my mother-in-law, the woman who raised the child who became the man that is the love of my life. Thank you. I hear so many tales of the in-law battles, the fights and frustrations…and I know that I was blessed to be given a M-I-L that loves me and I love in return. When I married Peter I had no idea that the vows that we would take, his mother would be taking as well. She has been by our side through the good times and bad, through the sickness and health and has done so with a prayer in her heart and love in her spirit. I can honestly say I have no idea how we would be getting through the past two years without Sharon, she's been the one to make sure meals are made, laundry is cleaned, the children are picked up from school and cared for when we can't be there, she makes sure we know we know we are never without a backup….she is priceless (and yes, a few have made offers for her…we're keeping her). Thank you, Sharon, for loving us all with the complete commitment that you do. You are a blessing every day.

For my sister, my childhood nemesis who has become my greatest friend and support. I love you so much….and I'm glad you managed to live through my torturous years to become the outstanding woman you are today. I am so proud to be your sister and to be able to call you mine. I can't wait for the day when your daughters call you up and truly realize the blessing that they were given when God passed them to you and gave them to you to raise.

I have so many mom-friends…the ones who had children before me and said "You too can have sleepless nights, frantic days, a messy house and the weight of the world on your shoulders" and made me want it!….the ones who are just now discovering the amazing wonders of motherhood with their first babies, still steeped in the newness and wonder of this amazing person who lived in their body….the ones who juggle and organize and make it work, so that a family still exists at the end of every day…the ones who've become my friends through a bond of fear, pain, encouragement and support, the ones who stand beside their children and fight the cancer battle every day….God has blessed my life with all these amazing women, to lift and be uplifted. I am thankful for each one.

I know that being a mom has never been more profound for me than it has for the past 10 months…exactly 10 months from the day Peyton was diagnosed. Each day with my kids has been more precious and more treasured than ever before and although I hate that it had to come to cancer to make it so, I am blessed because I never take a moment with them for granted. Every day is a mother's day for me, I GET to be their mom….I GET to be the referee, the lunch-maker, the bath-giver, the enforcer, the swing-pusher and the homework guardian…I get to answer questions like "Who would win, Spiderman or Superman?', I get to threaten to leave my kids at Wal-mart if they ask me to buy them ONE MORE THING!…I get to hear their nightly prayers, kiss their clean fresh faces and promise to love them more every day.

My friend Basi, who's daughter Kate has Optic Glioma, said it in a way I want to share with all the moms…"To all the diaper changing, carseat snapping, shoe tieing, tucking and kissing, lunch-packing, homework checking, diaper bag carrying, moms out there, happy mother's day weekend, you all inspire me and make me proud to say I'm a mom!"

Yeah. What she said.

f.r.o.G…fully relying on God
—Anissa

Forget about "Survivor" or "Amazing Race"…you want a reality show?….try this one…"Moms who have to find insane items for end of the year costumes at the last minute!!" I guarantee you drama, comedy and people pushed to the limits of their endurance. I had to find a lion costume for Rachael's graduation play….a lion costume in May…it's going to be 800 degrees and my kid will be wearing 25 pounds of polyester fur….and these aren't something companies apparently stock up on in May! Thank God for Google. Then Nathaniel lets me know Tuesday that he needs black gloves for his musical program on Wednesday….loving that one! I don't know if those would be easier to find if we lived up north, but after the 4th store I was starting to think we were going to have find "a guy" who sold things out of the back of a van somewhere….luckily we found some at Lowes, of all places…in the gardening section….size? Gargatuan! But they were black and they were gloves.

Rachael looked amazing last night in her dance getup….she was precious dancing and smiling and being the princess. Nathaniel cracked me up during his musical because he was seriously jazzed up through the whole thing. I wish you could have seen it, he was in the front row and this was HIS moment! He does spirit fingers like no one else, let me tell you. Poor Peyton's meds really kicked her butt in the middle of the evening and thankfully Peter and I drove separately because I had to take her home halfway through the night. She was tired and feeling awful already. Unfortunately that makes me THAT parent….tons of pictures of Rachael and none of Nathaniel.

In just 48 hours, Peyton's feeling the effects of the steroids already. This morning alone she ate waffles and a banana, then we went to "Muffins for Mom" at the kids' school where she ate donuts, then we went to Cracker Barrel for a yard sale meeting where she ate eggs and bacon…and it's only 11 AM. She's starting to look pale and her little eyes look bruised from the dark circles underneath. But she's still smiling and for the most part hasn't hit the crankies yet.

I ask for special prayers for our friend Nikki Hawkins. I'd shared with you that she got a puppy from the [url=http://www.forethechildren.org]Fore the Children[/url] event and she was so excited about Faith and that dog was so loved. Well, the puppy got sick the day after they took her home, and this week she died at the vet's office. Poor Nikki has, of course, taken her loss very hard. Please just pray for her as she copes with this emotional blow and loss.

I got news that the St. Joe's pediatric cancer wing was full this week…full because they had 17 new diagnosed kids…17! How sick does that make you feel? Just pray for each of these families, the pain, fear, struggle and battle that they will have. Let's just lift them up to God and pray for His powerful hands to be wrapped around them.

Yard sale plans are really underway! The date is waiting final confirmation, but for now it is set for June 30 from 9-3 at Baylife Church. There is so much to do and plan and organize, but people are really stepping forward to volunteer their time and effort and we are being shown the generosity of so many…it is truly humbling and uplifting at the same time. God is amazing in His ability to show you what He can do. I have faith that this event will be an answer to prayers and needs that our family has and that He is going to provide in a special way.

I just got back from taking 3 princesses to Disney on Ice. Yes, you read that right…3 princess…Rachael, Peyton and….no, not Nathaniel….I may be "evil" but not THAT evil! Rachael brought a friend from school, Emma, and all three of them dressed up in Disney princess costumes and we hit the road. We ate dinner at Olive Garden, they were a hit, and then when we got to the Forum they were so excited to see more little girls in their princess finery. We were in a box suite hosted by a local Tampa business with lots of snacks and goodies and a fantastic view of all the ice adventure. We met up with friends from the clinic, Nurse Nancy and her granddaughter Hayden, Allie Blain and her family, Adelaine and her mom and a friend and it was so much fun! They boys all missed out but we enjoyed Girls Night Out.

Emma, Rachael and Peyton ready to rock the Princess scene

Adelaine and Peyton getting their groove on!

Peyton and Allie giggling up a storm

This is the face that I'm going to hold onto as Peyton's steroids kick in…happy, smiling, loving life…and I'll be praying for its return.

f.r.o.G…fully relying on God
—Anissa

ps..
A random picture of Nathaniel to prove that I DO take pictures of my son!!

Funny extra! I call it "Taking the blame for everything"

Angela Powell shared this with me today and it cracked me up.

During nightly prayers one night, Adelaine made the comment that "Jesus gave me cancer"…and Bowen, the 5 year old, jumped on it and said "Jesus didn't give you cancer, Satan gave you cancer!"

Adelaine thought about that and then asked "PEYTON gave me cancer??"

Bowen said "No! Satan! Satan gave you cancer!"

So, now Adelaine will randomly ask Bowen the name of "who gave her cancer"…..so long as it's not Peyton taking the hit for that one.

Peyton and I arrived at the clinic this morning to a greeting crew of our child life specialist Kyleen, the All Children's Hospital Media Rep Ann Miller and the Camera Man Bill. I had thought that Peyton might act shy being put on the spot.

I was very wrong.

She danced and pranced and laughed and played it up for the camera. She was a flirty little ham all morning long. It was hysterical to watch the Bill trying to keep up with a three year old with this huge camera on his shoulder. She loved every minute of it. In fact, she loved it so much, she sat still while getting her blood pressure taken (she normally squirms and complains loudly when it squeezes her little arm), she sat nice and still while getting her port access (she normally wiggles around and is very vocal about her displeasure) and she never even flinched during the most horrible part of her clinic visits….getting the tape taken off of her port at the end of the day. She was a gem the whole time. In fact, we talked about the possibility of getting a fake camera to have there all the time to see if she'll "perform" as well at every clinic visit.

They taped her interacting with the staff and hopping through the hallways, the taped her doing crafts with her friend Allie, they got her when she was all drugged and woozy from her medications and then they taped a short interview with me about the impact All Children's has had in our lives. They were amused by the fact that everyone has a "Peyton story" to share, surprised that each person there has a loving and affectionate relationship with her beyond the normal patient/caregiver bond, and amazed by the sheer happiness that Peyton showed the entire time she was there. This is HER place, it might not always be fun…getting pokes and owies never are….but she knows that they love her, she knows the routine and she been doing this for so long that she doesn't really remember a time when this wasn't just part of her life.

I'm eager to see the end result. I can't imagine what they'll end up with because they filmed a lot of time they were there and I know they'll cut it down to a short little segment, but there should be a lot of Peyton cuteness packed into each second….I'm already coaching her to say "I'd like to thank the Academy….". The ACH telethon will air on June 2-3 and we'll also be there as a family to be interviewed on the 3rd….live….Ann asked me "What is it going to be like to have you there live?" And I had to laugh! Somewhere between Cancer Families Gone Wild and a Mutual of Omaha Wild Kingdom show. Should be fun for everyone. I will get a copy of today's taped footage and I'll be eager to post it when that happens.

Peyton starts her steroid Dexamethasone tonight, I've already made one trip to Publix to stock up on green beans, broccoli, and black olives….but it's always interesting to wait and see what foods grab her attention and become her obsession. She got Doxorubicin and Vincristine today, both make her hair disappear and the Vincristine has been the one trouble-maker with the leg pains and limping, so we'll be watching for that. She also had her spinal tap today with a dose of Methotrexate (it never fails to amaze me how well she does, virtual reality goggles really are a blessing from God) and that usually leaves her sore, but doesn't slow her down much.

Her counts this morning were great. We're starting out with an ANC of 1700, a platelet count of 325,000!!, her hemoglobin had dropped slightly to 9.2, but was still decent. This is a wonderful starting point, it's also great to see how her body was able to finally bounce back from all the harsh things we've done to it. Someone at the clinic even commented that her little face looked fuller, which it does because she's actually eating real meals! It's about to explode because her meals are about to start around the clock, but it was nice to see her appetite come back the way it should normally be. Please pray for her as she copes with the stresses both physically and emotionally as the medications begin to take their toll on her. It is so painful to watch her emotions spiral out of control and I know it is especially hard on Nathaniel and Rachael to deal with the sudden change of personality.

I got to see Sherry Tucker from the Giving Hope Through Faith Foundation today at the clinic. She and her family were there with balloons and goodies for the kids. It was a special way for them to spend some of their time today….this special, heartbreaking day when they recognize the one year anniversary of the loss of their son Zachary. One year ago today, they said goodbye to their beautiful boy who fought so hard, gave them so much joy and gave him back to God. I can't imagine how hard today be for them, how hard every day must be, but they were there…sharing their love and joy and making the day brighter for the children still getting treatment. They are such an inspiring family and I admire them so much, I feel lucky to have met them and to have had the honor of them touching my life.

Pray for both older kids as they have their big end-of-the-school-year performances tomorrow night. Nathaniel has a musical performance that he's very excited about and Rachael has a dance recital that she's been practicing for for months. This will be a big night for both of them and we are looking forward to lots of clapping and letting them be in the spotlight.

Friday morning there's another yard sale meeting at 9AM at Cracker Barrel (could it be ANY other place?). If anyone wanted to make it to Monday's meeting but couldn't, let me know and we'll be glad to have you for some "scrambled eggs and sausage"….otherwise known as "the Peyton Special.

f.r.o.G…fully relying on God
—Anissa

"Pete, I had the wierdest dream that my hair fell out. Not all of it, just like a professor…you know, all around the top."

"Really?"

"Yeah, would you still love me if all my hair fell out?"

"You're asking ME if I'LL love YOU if your hair falls out?"

"Oh, right."

f.r.o.G….fully relying on God
—Anissa

We need a lot of prayer for a little girl named [url=http://www.helphannah.org]Hannah Deal[/url] in the Largo area. She's 4 years old and she's been battling a brain tumor of the brain stem called a Pontine Glioma. This brain tumor has given her a 12 month prognosis, and she in in her 11th month. She is fighting hard, her family battling right beside her.

Hannah's MRI today showed that her tumor has grown more aggressive and they are running out of options for treatment. This little girl needs our prayers, she needs us to reach out to her family. They have known all along that all treatment was just a way to give her a little more time, maybe a few more months or years, but that her tumor would eventually take her life much too early.

We are praying that now is not that time.

Keep Hannah and her family in special prayers please. Let's help keep their faith strong.

"When you get to the end of all the light you know, and it's time to step into the darkness of the unknown, faith is knowing that one of two things shall happen: either you will be given something solid to stand on, or you will be taught how to fly."

f.r.o.g…fully relying on God
—-Anissa