Hope4Peyton

If Peter’s departure on Sunday turned the day into a Lifetime for Women movie, then today’s photo shoot with Flashes of Hope was most definitely a Mutual of Omaha Wild Kingdom episode…something about the “crazed reaction of beasts when thrown into a new element”.

Holy cow.

Yesterday was melancholy, there were many tears as Pete prepared to leave. He was dragging his feet and getting out of the house as slow as humanly possible, but none of us wanted to see him go, so there wasn’t a lot of fight. Rachael spent the afternoon auditioning as a professional wailer, her heart broken by daddy leaving. Peyton was so tired that her reaction happened after she woke up from her nap and realized that daddy really had left. Nathaniel did well, trying to keep the girls’ spirits up and helping me get some things done around the house.

I woke up this morning to find two little bodies in bed with me, both girls curled up at my side, I guess taking advantage of the missing dad-body. The kids got off to school without a hitch and I’m happy to report that Rachael let me know as soon as she got into the car that she “didn’t cry tears all day”.

Tonight, the kids and I went to a taping for the Leukemia and Lymphoma Society. We, and lots of our fellow Leukemia families, got to eat Olive Garden food (as they are the sponsor for the Pennies for Pasta program), get made up by Aveda Salons and have our family photos taken by the Flashes of Hope crew….again. We were lucky enough to have the chance to do this once before through our clinic, but we got to do it again and it was nice because Peyton has changed tremendously since that last set of photos.

You may have noticed that I generally take a lot of photos, I try to take at least a few pictures every day. My kids are natural born hams, they love to kick it up for the camera. One on one, getting a picture is pretty easy…in a group…imagine if you gave a herd of buffalo a case each of Red Bull and then let them loose in an ice skating rink…that’s really the best description of how the kids act when you try to get them all in one shot together. I hope at least one shot of the 4 of us is decent, and I know they got a ton of wonderful pictures of Peyton alone.

The purpose of the night was for each family to tape a segment of a video that will be used to kick off the Pennies for Pasta program. This is where schools nationwide will raise money through change drives, and the highest donating school in an area will be treated to a catered Olive Garden dinner. Sweet! It seems appropriate that Peyton should be doing an Olive Garden fundraiser, right?

So, after the photo fiasco, I decided that only Peyton and I would go into the taping session. I had things to say, a speech mentally prepared…I was going to say lots of things that would make it clear to kids how important their work was, how they were going to be able to help lots of kids with cancer, what a huge difference they would make in the world.

However, Rachael and a few of her goofy friends were standing outside the window of the taping room and they were jumping up and down, making funny faces, and flapping chicken arms. Of course, Peyton had to join in on the arm-flapping.

Can you picture it? I’m trying to talk seriously and heartfelt into a video camera about cancer and here’s my daughter, sitting on my lap, flapping her arms up and down like a chicken on acid. I totally lost my train of thought, I couldn’t concentrate on what I was supposed to say…I actually said “Peyton was diagnosed on July 13, 1996”…..1996!!! Nathaniel wasn’t born until 1998…interesting huh? I had to start all over again because my brain was in complete shutdown mode. I hope the kids see my portion of the video and think “wow, that poor kid with cancer has a seriously wacky mom, maybe we’d better raise some money so we can get her some psychiatric help.” My coherent message became a jumbled garble of words to the effect of “cancer…bad…help….kids…yeah.”

The week is gearing up for some seriously busy times. Tomorrow we have our Little Tales day, but with a Peyton-twist as they will be bringing in a cake to celebrate her birthday…again. We’ll have done the birthday thing so many times by the time the girl actually turns 4, she’s going to think she’s a one person Mardi Gras.

Wednesday is Peyton’s actual birthday, feel free to send cards or email her a fun card to Anissa(dot)Mayhew(at)gmail.com. You can send a physical card to

Peyton Mayhew
c/o the Children’s Cancer Center
4901 West Cypress Street
Tampa, FL 33611

For news:

1. Remember to keep the kids battling their diseases in your faithful prayers. So many are struggling with relapses, there are newly diagnosed every day. Extra prayers for Mathew Gliddon, Justin Jones, Justin Gaudineer, Sydney Sims, Jessica Rose Kohut, Matt Ermish, oh the list goes on and on, but you get the idea.

2. Keep your holiday shopping in mind with the Sydlet party coming up on the 14th. Those of you local to the area are welcome to come and shop for yourself or gift someone special in your life. Think about ordering a batch of cookies from the Band of Parents for someone you love and giving kids with the cancer Neuroblastoma a chance for a fair fight against cancer.

3. Jennifer Rivera had her Holiday Bazaar on Saturday, benefiting the Pediatric Cancer Foundation. She didn’t quite meet her financial goals, but she did touch a lot of hearts, and she and the vendors are planning a second event, potentially in the summer. I just praise God for hearts like hers, those who aren’t personally touched, but feel compelled to give anyway.

4. We all have that relative, friend or co-worker that we are planning to gift this holiday season, but have no idea what to get them. Consider making a donation in their honor to a great charity. Just a few charities that you can chose from are the Pediatric Cancer Foundation, the Children’s Cancer Center, the Loneliest Road Campaign, the Band of Parents, the Leukemia and Lymphoma Society and the “Let’s buy Pete a 95 inch Plasma TV fund”….ok, so a big no on the TV thing, but the rest of these groups are tremendous charities who help so many and are always in need of contributions to keep their programs going.

f.r.o.G…fully relying on God
–Anissa

Enjoy these pictures of Saturday night’s bday festivities

Today was a busy day with moments of sadness as the household prepares for Peter’s departure.

Rachael and I made one of those scary trips to Wal-mart, the kind where you feel like you should be on Sam Walton’s personal Christmas card list. Getting dad ready to be on his own was an adventure for us. It was a cart full of pots and pans, plates and cups, sheets and blankets, every odd and end that he’s going to need to be MR BACHELOR for 6 months. We are now the proud owner of two irons, clearance shelf cookware (I’ll be curious to see how long it takes to actually come out of the box) and so much random miscellaneous stuff that I know we’ll have to have a garage sale as soon as we move.

Because Peyton’s birthday is on Wednesday, we chose to celebrate her big day this evening. We invited Pete’s mom and our friends, the Hawkins family, to join us for what has become a regular staple of our steroid-ridden lives….black olives and breadsticks from Olive Garden. We had a wonderful meal, a good time with our buddies, Peyton enjoyed each and every present…this year she was old enough to care about what was IN the bags, not just the fact that she got them…and it was bittersweet because I know Peter’s going to wake up Wednesday wanting to hug his baby girl and wish her happy birthday and he’s going to be left with a phone call.

This part of the process really stinks. I’m going to be missing Pete, the kids are going to be missing Pete, Pete’s going to be missing us, and I’m still stuck with a dog that I’ve promised to be nice to.

Peyton’s taken her last dose of steroids for this round, she’s handled it really well. It is never a predictable thing, some months she’s crazed and craving, some months it blows by with hardly a glitch. She’s been very sweet this round, her eating has been just a little heartier than normal. It’s as if she knows that I’m emotional from all the news surrounding our friends and Pete’s move and she decided “It’s mom’s month to be a little nuts.” Nuts=crazy, just in case you were concerned.

I want to thank our friends Jeff and Amy Hogg for their awesome generosity. Pete and Jeff have been friends since grade school and they’ve continued a lasting relationship through the years. The Hogg family live near the University of Michigan and they charge for parking in their lawn for the football games. They chose a recent game and let people know that they were donating the money to Peyton. They don’t have a huge yard by any means, but through this one day, they were able to bless us with a check for 0 for Peyton’s fund!!! That just rocks and it reminds us of the tremendous support we have from all over. Thank you so much, Jeff and Amy, what you did means a lot more than the check itself.

Let’s keep the prayers going for Mathew Gliddon as he struggled through day 2 of his new treatment and for Justin Jones who has relapsed from a brain tumor that has moved to his spine. These are just two of the many who need your faithful prayer, and we appreciate every moment spent with God on their behalf.

f.r.o.G…fully relying on God
–Anissa

We have so many of our special friends in the hospital right now…Sierra’s in with pneumonia, Sam is there with uncertain chest xrays and a fever, Baby Leo is in for an undetermined fever, and Mathew is starting his first round of chemo to get him in to remission. I also got news of another relapse of a friend, Justin Jones, who had finished treatment. He initially had a brain tumor and it’s now in his spine. Please keep these and all the kids battling their diseases in sincere and faithful prayer.

Bad week in the cancer world. Would you think that there could be a GOOD week in the cancer world? In comparison to what this week has been, yes, other weeks can rock. But this is a week when we mourn the lives we had before we learned what cancer is all about. We fight anger at the indiscriminating way it attacks our kids, the ruthless way it tries to deprive them of their joy, we are frustrated and tired of having to see another child suffer just to make it to the next day. I would never have dreamed of taking my preschool age child to go “hang” at the hospital, but now that’s nothing. As long as she isn’t getting a bracelet and a bed, she’s good to go and visit.

Peyton and I dropped the kids off at school, during which I was told, not so gently “You don’t have to walk me to class anymore”. Just about 3 months ago, Rachael had to walk to class alone and almost had a nervous breakdown in the hall when she couldn’t find me. Today she lets me know that she’s cutting that umbilical cord with a razor sharp butcher knife. Oh the pain!!!

So, I parked the car and we all started to get out of the car.

“I said I don’t need you to walk to me to class, mom. I can do it by myself.”

Fine, I always liked your brother better anyway.

“I’m not going to walk you to class, I’m going to talk to some of the other moms.”

“Well, just don’t follow me to class.”

See here, missy, I carried you in my belly for 9 months, giving birth to you was much like trying to push a Buick through a garden hose and if I want to walk you to class, I will wear my “I’m with Rachael” shirt, point at you, screaming “I’m walking THIS child to her classroom today!!!” every step of the way.

Instead, I stood back, watched her walk away proudly independent and felt a pang for the child who stood in the walkway, bawling because she couldn’t find me.

Nathaniel, in his perfect timing, said “You can walk me to class, Mom.” Thank you very much for my co-dependent child!

After drop-off, Peyton and I headed to Einsteins Bagels to load up for a trip to the hospital. All stories told are that the food there is a complete abomination and getting you to eat is just considered “job assurance” for the doctor and nurses.

We order two dozen bagels IN BOXES, a dozen assorted pastries IN A BOX, a BOX of coffee…and the 15 year old kid behind the counter looks at me and asks “Is this for here or to go?” Are you kidding me?

For here, of course, I’m planning in put myself into a carb-induced coma and I can’t think of anywhere I’d rather be when I finish off 24 bagels than right here in the mecca of processed white flour!

Peyton and I packed up our industrial sized load of bagels and coffee…TO GO….and headed off to the hospital. I had to pull out her crappy old stroller that has been in the trunk of Pete’s car forever and put all the food in it. Peyton was not happy. I try to make her walk as much as I can, because she’s too heavy for me to carry and she gets very lazy if she thinks she can get me to push her. When she saw me get the stroller out, she lit up. Then she saw me put all the food in it and she asked where she was going to sit.

“In the parking lot, by yourself, if you don’t walk.”

She gave me the look of death and plodded along beside me with her head hung in misery. I am so mean. But it’s not like the bagels are going to walk themselves into the hospital!

I got the chance to be the world’s oldest candy striper (my first spelling of that word was stripper….what kind of volunteer program are they running at St. Joe’s?). We got all the gang together and ate and talked and just had a little impromptu Little Tales meeting right there in Baby Leo’s room.

On our way to see Mathew, we ran into his family outside the day hospital. Mat, Karen, and little Andrew were there getting their blood tests to see if they are going to be matches for Mathew’s bone marrow transplant. Andrew was born just after Mathew was diagnosed, so they saved his cord blood, just in case. So, with a special blessing from God, he’ll be a perfect match and that will enable them to use Andrew’s blood.

Mathew has a tremendously harsh protocol of treatment. Induction, the first part of leukemia treatment is rough all around, it’s set up to get a quick remission and the rest of the treatment is given to solidify the remission. Mathew’s cancer the first time around was resistant to the chemo and it took a very long time to get him in remission. Because he’s relapsed while in treatment, the grocery list of medicines they will be giving him is brutal. There are 3 daily IV chemos, 3 doses of Prednisone each day, and he’ll receive a bone marrow aspirate on day 14 to see if it’s worked. There are two more cycles planned if the 14 day BM shows he still has leukemia cells in his blood. But we are praying for success in the first 14 days. As soon as he achieves remission he will be taken to All Chldren’s Hospital (our hospital) because they have the bone marrow unit. They will waste no time to get the bone marrow done.

Many prayers are needed for Mathew.

Pete, the kids and I went to the Children’s Cancer Center Christmas party tonight. The kids looked smashing in their holiday finery….not a single picture taken. We had a blast with all our friends and the chance to get closer with new ones….no pictures of them either. The kids got to sit on Santa’s lap, meet Buc’s players and make crafts…..you guessed it, no pictures. It was so much fun tonight, it was just a chance for me to not chase the kids around snapping pictures as I am so frequently doing.

I want to share with you what a year has done for Peyton. Last Christmas was the time when Peyton looked most like a cancer patient. I mean, she was like the poster child for cancer. She was the color of milk, she was shiny bald, she was so very skinny and just looked sick. Tonight she was running around non-stop, she had her shiny cap of dark hair, her little cheeks round and she was smiling at everyone. We are so thankful for each precious day we have together.

This was last Christmas’ American Cancer Society Christmas party

Big changes…HUGE changes! No, I just love this picture, it makes me laugh until I cry.

f.r.o.G….fully relying on God
–Anissa

Fear.

When Peyton was diagnosed, our greatest emotion was fear. Fear of the unknown, the uncertainty, the “what if” of it all. We were afraid of the cancer, the treatment, the outcome, the dangers, and the possibilities.

Fear is something that we’ve learned to live with. Both great and small, the fears that we have dealt with have become a part of our day-to-day existence.

We feared her pain and suffering as we saw her first port access, as she laid in the hospital agonized from surgery and the effects of the cancer on her little body.

As soon as she was in remission it became fear of relapse.

When she was so down from the chemo it was fear of what the medications could do to her body.

Fear of the changes of her appearance.

Straight out terror during the steroid days….but that was more for our safety than for her.

Laying in bed with her at night, just staring at her perfect little face, touching her soft cheeks, fearing what would happen to my soul if she was taken from me.

Watching them radiate her head, it was fear of long-term effects.

Seeing her grow that hair back, embracing life, it’s the fear that her future will always have a little cloud hanging over it that we can’t do anything about.

Fear that our lives will never be “normal” again.

Some of these fears have become reality for our dear friends the Gliddons. When I say that he relapsed, it seems such an inconsequential way to describe what’s happening. When we were diagnosed the fear was so great because we didn’t understand what was happening. I can only imagine that knowing what lies ahead, it’s even more overwhelming for Mat and Karen.

Their child has fought for so long, the end of treatment was in sight…now they start all over again. Instead of the doctors walking in and confidently say “we know what to do”, they are standing there with no answers, no assurances. They have been through years of toxic medications, painful procedures, harmful radiation, the tears, anger and bitterness of a sweet boy who should be carefree and happy.

The fear that it will never be over, that when it is, the end result will not be what has been prayed and hoped for.

My heart hurts for Mat and Karen in a way that is indescribable. I guess because I understand what those fears feel like, because I live with them too. My fear for Peyton becomes more real in thinking about Mathew, because if their child can relapse during treatment, what’s to say that mine can’t as well.

When I got off the phone with Karen, I started talking and hearing from our friends. The troops were rallying. All afternoon we sat with Mat and Karen, we talked and laughed and discussed what can’t be known yet. We shared what we could of their pain, we tried to help carry the weight of that burden for a short time, we wanted to surround them with love and support, because knowing that you’re not alone is priceless. I just wanted them to know that each step of this battle, we are part of the army behind them.

Can I just tell you how phenomenal these women are, they dropped everything to run to the side of their friends, to comfort and console. I love each one, I respect every one, I am in awe of them.

So, tonight my prayers are for the Gliddons, for their comfort and faith…for each child struggling to defeat their disease…for each parent who lies awake in fear for that child…for God to reach out during these times and show us the vastness of His power and the strength of His love.

Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go.
Joshua 1:9-10

f.r.o.G…fully relying on God
–Anissa

**Please take a second and leave a word of support and prayer for Mathew on their Caring Bridge site.

That’s Mathew on the left with Karen and his little brother Andrew

Word just came that Mathew Gliddon has relapsed.

Please just raise Mathew up in prayer, keep his family in your thoughts as they start down this uncertain path.

f.r.o.G…fully relying on God
–Anissa