Hope4Peyton

We all know the adage about "the watched pot never boils"….bet you had no idea the same saying applies to waffles.

But Peyton has a method.

1. First you have to make eye contact with the waffle…

2. Then you must intimidate it…

3. Then you apparently sing to it…

4. Success!!

5. And then we do the waffle dance

So, the next time your toaster gets snotty with you, try it..it works!

f.r.o.G…fully relying on God
—Anissa

We have some seriously sweet friends! This morning Peyton and I had to head up to the clinic super early and Pete got Nathaniel and Rachael off to school. We were surprised to see our friends [url=http://www.caringbridge.org/visit/allieblain]Allie Blain[/url] and her mom Renee there. They had come to the clinic, even though they had no appointment of their own, just to bring Peyton a little bag of love full of goodies and a handmade card. It was so sweet, such a wonderful gift to start off our day. Thank you, Renee and Allie, for thinking of us and for being the wonderful friends you are. Thankfully, Renee had explained Peyton's steroid situation to Allie (who is THE most mature 4 year old I have ever had the pleasure of meeting) and when Peyton wouldn't be as friendly as she should be, Allie said very solemnly "It must be the medicine." Peyton did finally give Allie a nice big hug before she left and was so thankful for the snacks all through the day.

Peyton and Allie at Disney on Ice

Peyton's clinic visit went smoothly. The doc checked out her legs and her back. The deal comes down to the fact that Vincristine is a very necessary part of Peyton's protocol and she has to have it….it's a medication that she'll be taking during the entire time of her two year maintenance, but it'll be an every other week thing then. When tested today, she showed no reflex response, but the doc said that it is not uncommon and not to be concerned about it being a lasting effect. Because Peyton showed improvement when taken off the medication, that shows that the damage to her nerves repairs itself with enough time. I just continue to pray that after two years of beating down those nerves, they will still have the strength to come back to life. The grim fact is that she's missed many doses of that medicine, they need to get her back on protocol and a little nerve damage is not going to keep us from fully fighting the cancer. She got her full dose of the Vincristine today, and a referral for physical therapy. The PT won't be able to do anything about the nerve damage but it will help in strengthening her muscles and hopefully help in that regard.

As far as her back pain, the doc recommended just treating it with the pain medication and watching to see if it gets worse. She suspects it's just the result of repeat spinal taps.

We managed to get out of the clinic fairly quickly thanks to the hard work of the nurses who knew we had to get down to St. Pete to meet with the radiology oncologist. Peyton and I picked up Peter and we headed down to meet with Dr. Cotman. We had the chance to ask many of our questions and get the basic of what her radiation treatment will entail. She will have to do 10 treatments of radiation, which is considered low dose, to her head. She is not having spinal radiation, thankfully. It was explained that the chemo she has injected into her spine with each spinal tap is taking care of any potential leukemia there, and the cranial radiation will treat for any cancer cells that may have made it to her brain. Unfortunately, there is no way to know if there were any there to start with, or if there will be any when it's all said and done, but we're putting our trust in the doctor's experience and our faith in God's power.

The side effects should be minimal with the dose of radiation she's getting. We will be on the watch for any burning of the skin, she'll have hair loss, there are chances of effects to her hearing and eyesight which, if they happen, are temporary, there is also the better chance of her suffering nausea and fatigue from the radiation. The doc explained that because the radiation remains active in her for weeks after it is administered, the effects can come sometimes come weeks or months after the initial treatment. When we asked him about long term cognitive problems, he told us that it is a possible problem, but most likely, with the low dose that she'll receive, her problem will be minor….as he put it, the difference between an A student and a B student…I was never an A student, so who am I to judge? Maybe I'll just finally get a kid who takes after my own scholastic abilities instead of Pete's!

We go back to the radiologist to do a simulation on the 31st, it will be when they fit her for a mask that will go over her entire head and help to immobilize her during the treatments. I hope she doesn't freak out when they fit it over her face, and they're also hoping that with the quickness of the actual treatment she'll be able to handle it without sedation. I have no idea whether she'll be able to do it or not, it will totally depend on her mood that day, I guess. The radiation will be a general external radiating, not a pinpoint radiation.

It's scary to think about, but after meeting with Dr. Cotman and getting more info from him, I felt better about the procedure. He did explain that with kids who are CNS positive, there was a 10% higher chance of relapse in those kids who did not receive cranial radiation, so I think we know that's not a chance we're willing to take. The schedule is absolutely a mess because day 1 of this phase of treatment started on a Wednesday….each chemo and radiation date is scheduled by day….so, we start on a Wednesday and go through Friday, then home for the weekend, return for treatment on Monday and come home Friday after treatment, then head back for the final treatments Monday and Tuesday….would've been so much easier for it to start on a Monday and just have two weeks of schedule wrangling…but then when does life ever like to make things easy?

One of the things Peter and I got to do while in St. Pete was to visit both Ronald McDonald houses, one behind the hospital by our radiation place and one in front of the hospital by where we'll get our chemo. Both were extremely nice and well set up for the family, I think Peyton may actually enjoy her time there. It costs the family a night to stay, that includes any and all meals, and we are required to perform one chore for the household (it could be vacuuming the hallway or washing all the fronts of the appliances, nothing major) and we have to make sure to leave our room in spic and span condition for the next family. One place is more homey and the other is more hotel like, but the hotel one allows for more room and if Peter is able to bring the kids to visit it will offer them the ability to stay with us if they can.

A sad thing happened today…there seem to be a barrage of sad things, but this one of the scariest things I know lingers in the mind of any parent with a cancer kid. While touring one of the RM houses, I ran into a mom I know, Amber Bowman, her sweetie of a daughter Carly has a brain tumor and is such an amazing fireball of energy. They were one of the first families we met the in the days of Peyton's initial hospital stay last July. They go to our clinic and have become a familiar sight. Today Amber's face was tired and sad and I was struck with the fear that Carly had taken a turn for the worst. The news was even more devastating because although Carly remains stable, they just found out their other daughter Lily has the same type of brain tumor. This family is now coping with a 2 year old and an 8 year old with brain tumors and that is just heartbreaking. I know one of my greatest fears is that Nathaniel or Rachael will also become sick, I know that dealing with Peyton's cancer is hard enough, but to be caring for two of them….overwhelming is an understatement.

This is little Carly Bowman, I don't have a picture of the rest of her family to post, but
please keep the Bowman family in your prayers, these are going to be days of monumental struggle as they also have two healthy sons that they have to care for as well. They will need all the prayer and support they can possibly receive.

I would like to end this post on a bright note. As you all know, Nathaniel and Rachael have attended a fantastic private Christian school for the past 3 years. Central Baptist was a huge source of support when I had my stroke, providing a stable and encouraging environment for Nathaniel and Rachael to have when so much was upheaval at home. Then when Peyton got sick, the school really stepped up and offered us a scholarship for both kids so they could keep attending even though I had to stop working and we could no longer afford the tuition. It's been a prayer that the Lord would provide us a way to keep our kids in the school, it has been the one constant, unchanging thing in my kids' lives, a place that they can always find friends and the loving support they need when home life gets crazy. I wanted that for my kids, but had accepted that perhaps God's purpose was for us to be in another school, touching someone else's life. The fundraiser for Peyton was originally planned as a way for us to raise money for expenses due to loss of income and hopefully help keep the kids in school, but I was torn by the idea of using money that should go into Peyton's medical fund for private school tuition.

So I prayed for an answer to become clear.

God answered unquestionably.

A couple of weeks ago a commitment came from an anonymous source to pay a year's worth of tuition. A family who has kids in our school made the decision that the the tuition they were already using to pay for their 8th grader who would be heading to public high school could just stay at the school to help one of our kids attend. Then the news came this week, that another donor has made the commitment to pay a year's tuition…and this person is someone from the community who doesn't even have children attending our school. These people just heard of our struggle and chose this special way to help our family.

This doesn't help Peyton, it won't take her cancer away and it doesn't fix any of her problems. But cancer has affected us as a whole family, we have all suffered from the effects of the disease in one way or another. These people have provided a huge blessing in our lives, they have found a way to help the needs that could be met. I may never know the names of the people responsible for this, but I know that the Lord will bless them in the mighty way they deserve because I know I never could!

The yard sale is still going to happen on the 30th of June, but now all the proceeds of it will be able to go into her fund for her expenses. How awesome is that?!!

f.r.o.G…fully relying on God
–Anissa

ps…I has to share some great Peyton insight. She found this family picture (I know some of my family will thank me for cropping them out….cough cough my sister cough cough) and wanted to know who that was.

"Who which one is?"

"That one with the super fuzzy hair."

"That would be me, Peyton."

"For real?"

"Yeah, that was me with big hair."

"Mommy, you had fuzzy hair JUST LIKE ME!"

There was some silence as she thought about that picture….then she asked me "Mommy, why was your head so big?"

"It was just my hair."

"I hope my head doesn't get that big."

I personally think her head's already gotten big enough!

Oh how I'd love to say that this round of steroids is going to fly by like a dream. However, the fact that I'm writing this blog in bed with a moaning and thrashing Peyton is a pretty good sign that it's not.

This is her first day of it really coming out in her personality. She was doing ok until the moment we stepped out the door to take the kids to school. Last Wednesday at the start of Delayed Intensification it was decided that her neuropathy symptoms were relieved enough for her to start back at a full dose of Vincristine. Monday when we went back to the clinic, I was able to report no new falls, no signs of leg pain and she seemed to be doing a lot beter. This was good! This was apparently premature as well. Because two steps out the door this morning her legs just crumpled…I was glad I was there to see the fall so I could explain to the doc what happened….it was back to the point where she doesn't trip or stumble, her legs just give out and she went flying. Scraped knees and palms….the bleeding stopped within a few minutes, but the crying went on for a good half hour. With her band-aid for her port, the two leg pokes she got yesterday, the two on her hands, the two on her knees and the one on her foot just for good measure….she is a walking billboard for Band-aid…we should be getting a kickback from them for so prominently displaying their product on so cute a model.

She took the fall really hard, her whole mood took a dive. When we got to the [url=http://www.childrenscancercenter.org]Children's Cancer Center[/url] for playgroup she perked up and played with her friends, but then she got tired and moody and came in to hang out with me instead, complaining that her back hurt. For her to give up the chance to eat french fries (which where sent for by special order of the steroid brigade) and play with her friends, she was feeling very bad. When we got in the truck to head home, she cried all the way home that she wanted to go to bed, she just wanted to take a nap. However, when we got home, she tossed and turned and complained about her back. She did finally fall asleep, a relief for us both.

I don't know what she dreamed about…I tend to think it involved some sort of footwear thieves because she woke up screaming "I can't find my shoes!!! I can't find my shoes!!" There are days I'm not sure I really want to know what goes through this girl's mind when she's sleeping.

After we got some shoes on…mind you, she only has on a pull-up with her blossoming little pot belly poking out, with socks and black shoes (I don't know why she feels the need to dress like a Canadian tourist)…..when she realized that something was missing from her life.

The bag of chips they gave her at the CCC was GONE!

We watch the tv show "Lost" and even if you've never seen it you probably know that there's a horrific plane crash…the scene where the crash srvivors are all roaming the beach crying and screaming is disturbing.

Peyton's reaction to the missing bag of chips make the crash survivors all look like Valium-overdosed zombies. She cried those big, huge, all over body sobs that are so overwhelming that she can hardly breathe…she has to sit on the floor so she could really get her wail on….it was so pitiful. Over a bag of chips….and they were just plain Lays chips, they weren't even Cheetos or Doritoes! Her head might have popped right off, I shudder to think of it.

I found her some chips, gave her some milk and watched her from a safe place across the room. Up and down, this poor kid goes.

I am happy to report, as of the moment that I am writing this, her pain medication has kicked in and she is now smiling and happy and the back pain is a non-issue.

She's felt pretty awful all evening, she didn't even eat any dinner…that's pretty bad for her.

We head to the clinic early in the morning for more chemo. I'm interested to see what the doctor has to say about the intense back pain she has going on…if it was closer to the spinal tap she'd had last Wednesday I might think it was just a residual pain from that, but this is the first day she's complained so it's definitely out of the ordinary. After we finish at the clinic we head down to St. Pete to meet with Dr. Cotman (which I have to tell you I'm already going to have a hard time talking to because one of the mom's have set me up to laugh….she says he looks like the guy with the afro from the Mod Squad….and he doesn't move his lips when he talks…I hope I'm able to concentrate on what he's actually saying and not staring to see if his lips are moving!) about Peyton's upcoming radiation schedule. It'll be along day, but hopefully because Pete will be with me it'll make it an easier one.

I did have some fun stuff happen today. Nathaniel and Rachael have been involved with the CCC Big Buddy program that pairs them up with second year medical students. As the end of the year fun event, they are sending all the budy pairs to Disney for the day. Charlie and Nathaniel are already planning to head to MGM studios, but Rachael's buddy Marie will be out of town. Marie came this past weekend and took Rachael out for a final fun day out that involved Olive Garden, the movie "Meet the Robinsons" and a manicure! Bliss!! Because Marie can't make the Disney trip we were given the tickets so that Peter or I can take her for a one on one day. I'm hoping it's me, but it'll all depend on how Peyton's feeling and her co-dependency issues at the time.

On top of getting news that James died yesterday, there has also been an unhappy update of a little local girl named [url=http://www.caringbridge.org/fl/sydneysims]Sydney Sims[/url] who has stage 4 Neuroblastoma. She has relapsed and it just involves so much that it is too much for me to go into here. But please pray for her and her family as they continue to battle for Sydney's life. She has such an amazingly bright and contagious smile, and she also sells handmade jewelry called Sydlets to raise money toward the expense of treatment. [url=http://www.sydlets.com/]Check out the Sydlets[/url]. Sydney will be traveling back and forth to NY for her treatments, starting with a major surgery and her friends and family are putting together a last-minute fundraiser to help with expenses in some way. It will be on Saturday May 26th from 12-3 PM at the Twin Lakes Park in Valrico. If you can make it, please do so….this family needs our support and prayers!

Sydney Sims

Keep Peyton and all her cancer comrades in your prayers, they are so courageous in all they suffer through. Each one is a hero.

f.r.o.G…fully relying on God
—Anissa

Mother's Day morning I floated to consciousness to the twitter of chirping birds and the melody of singing angels….gently and lovingly I was awakened to a peaceful awareness….NOT so much.

Instead, I woke up to find Peyton's face approximately 10 cm from mine, and when my eyes finally cracked open she said "You're awake, can you make me some breakfast now!?" I promised her I would, then promptly rolled over and stuck my head under the pillow. About 4 minutes later Nathaniel came in and poked me in the shoulder "Peyton wants you to get her some breakfast." Yes, I know that, I'll buy you a car if you go get her a bowl of cereal. Another few minutes went by when Rachael came in to announce that "Peyton stinks, she needs her diaper changed!"

Happy Mother's Day!

Peter had to work the night before so he was totally off the hook for sleeping in on Mother's Day, but I was still a little iffy on the kids getting up at 7 AM on Sunday to sing the "Mom Can You…" chorus line. However, once I got up they brought me handmade cards, pictures, a special pin that Nathaniel had made at school, and lots of hugs and kisses. That completely made up for the rude awakening.

Peter had to work all day as well, so I was getting the kids dressed and off to church. When I got them all into the car and sat in the drivers seat there was the sweetest card and "Mom's Coupon" booklet sitting on the dashboard. Awwwww. After church, we came home and shared dinner with my mother in law and opened more gifts and then I got one of the best gifts of the day…a nap. I love those….those are the gifts that just keep on giving!

This morning when I was getting Peyton dressed I realized how on the ball this kid really is. She counted how many bandages I had in my hand….3….and knew immediately that she was getting her leg shots this morning. This is never a pleasant discovery for her, but with the added emotional disruption of steroids, it was a struggle to keep it from becoming an all out fit. I did finally get the EMLA cream on her port and legs, but not before she gave me a super dirty look and told me "I don't love this cream. I don't love these pokies. I don't want to go to the clinic. I'm hungry." That pretty much sums up the life of a leukemia kid.

Once we got to the clinic we saw lots of our buddies, Nikki, Allie and David and her mood perked up. She fought like a crazed bear during her actual shots, but recovered well after. The big news, for me anyways, was that she made a breakthrough and actually used the potty at the clinic. Apparently she was able to overcome that fear that "i have a little booty and it will fall in that giant potty!"

Peyton has actually been making all sorts of new progress lately! She learned to write her name!

This is the front page article about the Relay for Life at Grecco Middle School in Temple Terrace.

It is a precious picture of the three of us and a great article about the event. However, take a moment and peruse the blurb about our family….notice anything interesting about the spelling of my name? Yes, AMISSA Mayhew is taking credit for all my hard work! How dare she! Regardless, I love that picture and am excited to publish Peyton's first newspaper showing.

We have lots going on this week, but the big one is that on Wednesday we go back to the clinic for more heavy duty doses of chemo in the morning and then book it down to St. Pete to meet with the radiology oncologist or oncology radiologist….I'm not sure how that one goes…to set up Peyton's radiation schedule and to grill him over all the specifics of the treatment. I'm hoping he eats his Wheaties and takes his vitamins that morning because he's sure to be needing all of his functioning brain cells that day.

In all seriousness, let's say a special prayer for all the doctors and nurses and medical staff…these people carry a heavy burden in the responsibility they bear for the care and treatment of all these kids. They give so much to the patients and families, they devote so much of themselves to being knowledgeable and understanding for families when the families are at their absolute worst….it's not an easy job, I don't envy them….I always pray for God's guiding hand on them as they lead families through the path of treatment, to give them the strength to do the heavy lifting required to administer the often painful treatments and the love to give the compassion when its needed.

f.r.o.G…fully relying on God
—-Anissa

ps. The other thing I meant to mention about Peyton's progress is that she can now take her pill medication without us having to crush it up and put it in something to mask the flavor. She just pops it in her mouth and swallows it down with little to no fuss. I know full grown adults that can't take pills….she's my hero!

I just got the message this morning that another little boy was lost to cancer. [url=http://www.caringbridge.org/visit/jamesaldredge]James Aldredge[/url] battled Burkitt's Lymphoma for 15 months and has gone to the Lord where he can now enjoy eternity with a perfect, healthy, cancer-free body. Let's just send a special prayer for his family who will be lost in their sorrow as they mourn their loss, but rejoice for a boy who's gone home to the Lord and his Heavenly reward.

Kiss your kids today and let's remember that a cure isn't out of our reach, it just needs to be fought for. Please take a moment to check out the work of the [url=http://www.fastercure.org]Pediatric Cancer Foundation[/url]. Each child we lose is one too many.

“We rejoice not in the fact that we are suffering, but in our confidence that the pain can be transformed. The value lies not in the pain itself, but in what we can make of it. The pain need not be meaningless, and therefore we rejoice in the object of our faith, a God who can effect that transformation.”

f.r.o.G…fully relying on God
—Anissa