Hope4Peyton

What a day we had! In the months since Peyton was diagnosed we’ve definitely had a roller coaster of good and bad moments, and today was one of those special very good days.

Nathaniel’s comment about taking this picture was “this stinks!” I told him in about 8 more years he’ll be saying “I was stupid!”

The Children’s Cancer Center, which you’ve often read about in our posts, have continued to bless our lives. These people who’ve answered a calling to enrich the lives of cancer children have hearts of unimaginable size. They talked today about the ongoing generosity of the Tampa Bay Lightning to reach out to cancer families in our area, how they found a home for a family this year whose child lost the battle with cancer and were about to be homeless. These are the kinds of people we spent the day with, the people who are blessed to have the resources to help make a difference, and have the compassion to see the needs out there and reach out.

We were invited to be a part of the Lightning Adopt-A-Family Christmas party, where a Children’s Cancer Center family is paired with a team player and his family. The player and family make the holidays a little brighter for the cancer families by bringing gifts for the children and by hosting them at a party at the St. Pete Times Forum. We really had no idea what to expect, but we were looking forward to a fun day and the opportunity to meet the hockey players.

Pete and Tim, keeping a watchful eye on the present free for all

We were hosted by Lightning captain Tim Taylor (his name tickled Pete because one of his favorite tv shows is Home Improvement, and thrilled me because I could pronounce it…check out the roster, that’s no small feat), his dynamic wife Jodi, and their two fantastic kids Brittany and Wyatt.

This is sweet Brittany

Brittany is in the 6th grade and was like a magnet for Rachael who just yearns for Big Girl Influence, and Wyatt is only 4 months older than Nathaniel so they were prone to just disappear together and have fun of their own making.

Nathaniel’s new friend Wyatt

My sweet hesitant Peyton, who shies from strangers was strolling around the room in the arms of Tim and Jodi in a matter of minutes, all smiles and giggles. It was as if she just knew that these were good people and accepted them wholeheartedly. We enjoyed the Taylor family so much, they are genuinely nice people who were easy to talk to and fun to be with.

Jodi and Peyton giggling it up

The kids got their faces painted, Nathaniel and Rachael with lightning bolts and Peyton with butterflies.

We all opened gifts, a tidal wave of generosity, from the Taylors, the kids were ecstatic and it was so much fun.

Cancer takes so many things from a family, the sense of security, the ability to plan for the future, and for many, the means to give gifts of love when you’d most like to. We’ve always tried to instill in our kids that Christmas isn’t about the presents, that it isn’t about opening boxes and getting new stuff, but they’re kids….that’s the BIG thing about Christmas! So it’s been hard to make them understand that with the added bills, with Mom not able to work, with so many changes, the holidays were going to really be about being thankful for the important things that we do have. But it’s been hard for me this year to accept that even though my kids have been exceptional in the face of a hard year, we wouldn’t be able to reward them in a tangible way, with presents and lots of fun boxes to unwrap. The Lord definitely took care of that for us.

The gifts overflowed the table, the children were wide-eyed and thrilled at the multitude of wrapped boxes in front of them. There were toys, makeup, games, craft sets, play-doh, movies, clothing, a karaoke machine (hehehe, Dad and Mom are pretty pumped up about that one) and so much more, just an unimaginable blessing for our family. We knew that there would be a present exchange, but my expectations were more like one or two boxes per child. We literally had to empty the trunk and wrangle the four bags of goodies into the car.

Overwhelmed, that is one word for how I felt most of the afternoon. Tears were in my eyes more than once, just thankful that my kids were made so happy, that even though we couldn’t give them all the little things they wanted for Christmas, God had provided them through the Taylor family. It is an amazing thing to see prayers answered so blatantly, right in front of you, to see God say “There ya go, I hooked you up, how do you like that one?”

The aftermath

We are so blessed each and every day, we can never say thank you enough. Our family, our friends, those who touch our lives with prayers and love, those who’ve given generously to make our path a little easier to walk, we thank you, and we thank God for bringing you into our lives. We continue to be thankful to the Lord for Peyton’s good health, tomorrow she goes in for some blood and then we’re chemo free until just about Christmas.

f.r.o.G….fully relying on God
—Anissa

I just had to share these sweet pictures of my family. They are so special and we treasure them so much because from year to year the kids just seem to grow and change so much, and these are little memories captured forever. I'm so proud of my kids and they are my greatest joy…my husband ain't bad either. Yesterday was the 10th anniversary of our first date…and he remembered it! That's MY husband.

f.r.o.G….fully relying on God
—Anissa

Last night I was lying in bed and just looking at Peyton as she slept. All I could really think about was that today was going to be her birthday and how much a celebration of her life it was going to be for our family. In a year that has brought so many fears about the uncertainty of that precious life, it was important to me that we take this day to just reaffirm that she is our gift to share for what time we have, whether it’s 10 days or 100,000 days.

Yesterday Peyton and I were surprised by some wonderful women of the kid’s school who provided a birthday party for Peyton. There were decorations, cupcakes, candles to be blown out and presents to be opened. There were stacks and stacks of cards made by the loving and compassionate hands of kids from kindergarten to seventh grade. My heart wonders at the impact she may have on a child that sees her every day, who’s life she’s changing and influencing, and when I see the love that opens up to her from all these sweet kids, I see that she impacts everyone. The cards that came were just amazingly full of joy and hope for Peyton. She was gifted with a homemade Dora the Explorer blanket and a Minnie Mouse doll that smells like strawberries (which fascinates Nathaniel to no end!) and our family was given dinners via gift cards, but truly, the big one was a BIG one. The box was huge….the wrapping job was immense….it was a Dora the Explorer doll house, it was enormous! And she loved it. It just lit her up like fireworks. We didn’t even make it into the house when she started in with “Can you open it? Can you open it now? Can you open it?” Whoever thought of all those little twist ties that keep all the pieces attached to the cardboard has never had a three year old at their elbow waiting at the end of their patience….they are not nice people.

Tonight we had dinner with Grandma Sharon and had cake and ice cream, we opened more presents, and she had a free for all! She got a picture memory book and body crayons (something she is actually allowed to draw on herself with), she got slippers for those cold hospital floors and new pjay-jays (what she calls pajamas), a Barbi doll, a Dora purse, a tool box (that is Daddy’s girl through and through) and the kicker was a scooter from Grandma that just made her day!

This morning Rachael was shepherd #5 in the Christmas program at her school. She had one of six speaking parts and she did a great job! She smiled and hammed it up, she sang her songs and she didn’t even flinch when her sister escaped our clutches and rushed the stage to give Rachael a huge hug mid-performance. It was sweet.

Tomorrow Peyton and I are going to spend the morning with Adelaine and Angela. Angela is hosting a birthday tea party for the girls and it should be a lot of fun for the little ones, we’re looking forward to it. These are just special friends, I am so glad that we’ve met them and they just make everything we go through a little easier to deal with. They are a huge blessing in our lives and we are thankful for the friends that they’ve become.

We celebrate our daughter’s birthday today. We remember the day she was born and we saw her beautiful little face for the first time. We commemorate that day with cake and presents and telling stories about her with our kids and sharing family time. But we’ve also learned an important lesson this year, to celebrate every day, not to wait for one day to let our children know how essential they are to us and how much we treasure them. Let’s make sure to love our children every day that extra little way we do on their birthday, hold nothing back, give them our everything. Peyton told us at dinner tonight “Jesus loves us” and she’s absolutely right, and that’s the way he loves us, with everything.

Wow, I do get onto a ramble on these things don’t I?? Ok, I quit now!

Love to you all!
f.r.o.G….fully relying on God
—Anissa

We’ve barely put our Thanksgiving indigestion behind us and we’re already hitting the Christmas parties! We’re training our kids now to hang with the big dogs. Thursday night the Children’s Cancer Center had a Christmas party for all their families to enjoy time together with food and crafts for the kids, Santa came and thrilled lots of little hearts and we got to be with our special friends who’ve been one of the blessings from this cancer.

Whispering “Nintendo DS, Nintendo DS, Nintendo DS” in the old man’s ear!

She said “God knows I was a good big sister this year”…I guess she decided to pull rank on Santa.

You’ll notice that Santa had to observe the 6 inch rule so there would be no screaming involved.

It was a fantastic night even though I’m sure for some the thought of spending a night in a room with a bunch of kids who have cancer is just a depressing thought. But these children are so happy, they just radiate joy, there was so much laughter and fun in the air, that if you didn’t see little bald heads everywhere you wouldn’t have known anything was wrong with any of these kids. They have so many life affirming messages to share. They are God’s gifts every day.

Examples of bald heads! What cuties

And I think that’s one of the joys of these events. We don’t pity each other, we don’t feel self-conscious and we feel a complete empathy with every other person.

There’s a great picture of Nathaniel as well, unfortunately, I just realized he had food in his mouth, so it won’t get posted.

Tomorrow we go back to the Children’s Cancer Center again for a party for Nathaniel and Rachael to celebrate with their big buddy mentors, Marie and Charlie. They are just so excited about this party because it’s all for them and I know it’s going to be tons of fun. We’re also planning special holiday outing for them. Marie’s going to take Rachael shopping for all the people on her Christmas list, to a movie and dinner….that’s sheer heaven for my 5 year old. Charlie’s going to do the same for Nathaniel….I have a feeling that Charlie will be teaching Nathaniel the joy of one-stop shopping at somewhere like Wal-Mart or Target, such a guy thing.

Peyton had chemo on Monday, and I haven’t posted much about it. She got major doses of methotrexate both in her port AND in her spine, she also got vincristine in her port, and a flu shot. She was pretty jazzed about Mom and Dad getting our flu shots as well, she held our hands and told us how brave we were. The meds aren’t making her sick, but they are really wearing her down. Her energy levels are so low, she takes 4-5 hour naps during the day and she’s just pale as a sheet. But she’s happy, she doesn’t feel bad, she just isn’t feeling perky. So, we stay home most days, she sleeps and I try to squeeze a nap in with her or get stuff done around the house. She doesn’t have to go back for more chemo until next Friday, but we may go back for blood counts just to check and see if she needs a little pick-me-up.

Peyton’s current round of chemo has been pretty easy going, it’s been 10 day cycles, so we’ve had nice gaps between clinic visits and she’s felt tired but good throughout. She’s had no transfusions and her blood counts have stayed great! She’ll be finishing this cycle (called interim maintenance) on Friday and then she’ll have two weeks off until she starts the next cycle (delayed intensification). It’s really going to be very hard on her system. This is going to be a terribly rough patch of chemo. The even harder thing is to know that we have to go through a second interim maintenance and a second delayed intensification afterwards, followed by radiation treatment. Some days it feels like it’s never going to end. Other days I start to see the light at the end of the tunnel.

The next cycle involves a huge round of chemo meds: vincristine, dexamethasone (the steroids, please pray for us all!), doxorubicin (nicknamed “the red devil” for a reason), peg-asperiginaise, cytoxin, ara-c, thioguanine, and methotrexate. National spelling bee here I come!! Those 5th graders ain’t got nothing on me. It’s a horrific combination of meds, her counts will completely bottom out, she’ll require lots of transfusions during this phase, she’ll be neutropenic the entire time (meaning her immune system will be non-existent) and her new grown fuzzy hairs will totally fall out and she’ll get the shiny bald head. If she’s going to be sick during a phase of treatment, this would be the one I would expect to see it. From talking to other parents, delayed intensification is sometimes a period where they have to be admitted to be given treatment depending on their reactions. So, we’ll pray for the best and wait until it happens to worry about it.

On the flips side, we got FANTASTIC news from the doctor regarding Peyton’s new leukemia cells that were found in her bone marrow result. They were myleoblastic cells, which means if she had AML leukemia that would be a problem, but because she has ALL leukemia and they were not lymphoblastic cells, it means that she is not having a relapse as we feared. The doctor also clarified that with her blood counts remaining nice and high on their own, it’s a sign of remission, because if she were relapsing, her counts would be low as they were at her diagnosis. If her counts were to drop unexpectedly and not recover, if she were to have unexplained fevers, start having bone pains or other symptoms then they would immediately do a bone marrow and check, but they are perfectly satisfied that she is still in remission and doing wonderfully. Thank the Lord for that news, it was the greatest Christmas gift Peter and I could have received.

Peyton’s birthday is on Tuesday, she’ll be 3 years old. She’s just changed and grown so much over the last year. Her new thing is to climb into the driver’s seat of the car and stick the key into the ignition, she just thinks that’s the coolest thing. So, yesterday she did that and my friend Kim was there and asked her “Peyton, are you going to drive?”, and my two year old has perfected the “are you stupid?” look already.
She says to Kim “No, I’m not 4 yet.”

We’re planning to do family night on Tuesday with a little cake and presents, and hopefully plan a little party with friends during her chemo break in the next few weeks. We really do want to have a nice celebration for her, she deserves it for being the amazing little soldier she’s been this year.

f.r.o.G….fully relying on God
—Anissa

My friend Lisa has 8 children and I’m going to have to ask her if she’s ever managed to get a picture with all of them looking at the camera at the same time, smiling without one of them trying to pick their noses!

I totally forgot to put up the link for the people who might be interested in taking a peek at Peyton and her sweet friend Adelaine in their television debut. This was aired on Thanksgiving.

http://www.tampabays10.com/news/local/article.aspx?storyid=44285

You can go to the site and click on the link for video story and watch the little clip. It's sweet.

f.r.o.G….fully relying on God
—Anissa