Hope4Peyton

Wouldn't you love to hear that after being strapped to a table and traumatized by a radiologist that Peyton had a gem of an evening? Full of happy fluffy cotton candy moments!

Well, instead she was constipated.

Now this is where I warn people that this next portion of the post is maybe TMI…Too Much Info….so stop reading now!

For those willing to brave this part, constipation is really rubbing salt in the wound of a cancer kid. It's not like they don't go through enough with chemo making them sick, making them ache, making them tired and worn out…now she can't poop! She takes a stool softener to make this an easier process, but with Vincristine, Codeine and enough caloric intake to sustain most of the offensive line of a football team…I guess her system's bound to get clogged up.

Poor little girl cried for hours while trying to push…in fact, she looked a lot like I did trying to birth an 8 – almost 9 – pound baby. It didn't take as long for me to produce a baby as it did for her to take care of business. After finally realizing she wasn't going to be able to do it on her own, I gave her a suppository to help matters along. There was a certain look in her eye that told me I should prepare to sleep lightly for the next few years because she WILL get her revenge! Although relieved, she wasn't shy about telling me that she REALLY didn't love THAT medicine.

I have to tell you that I was pretty much a midwife for Peyton last night. I rubbed her back and soothed her the best I could and then let her squeeze my fingers through the worst of it. So, all last night, she held onto those fingers…yes, I literally slept with my arms held out so that she could grasp my fingers….all night long. I think maybe she thinks my fingers are some sort of laxative…because today whenever she needed to poo she's yell for me to come and give her my fingers to squeeze. Let's hope she gets over that eventually or it'll make her high school years a little awkward.

Ok….on to better topics!

Our friend David came and took Nathaniel for the day so that he could play with his kids….loved it!

Our friend Chris let Rachael come over and spend the day with her girls…a happy girl came home.

You would not believe how much I got accomplished in one day with the two older kids gone and Peyton lounging on the couch all day. I feel much more prepared for our trip to St. Pete, I'll be able to finish up the rest of packing and prepping tomorrow.

I also got word that friends are planning to deliver some meals to Pete and the kids during our absence! Our friends have jumped in to make sure the kids are taken care of during the mix up in scheduling and now they're going to feed the crew! How awesome a blessing is that? I know Pete could handle it, but its nice to know that it'll be made easier through the kindness of so many. That gives me a lot of comfort in having to leave my family for so long.

The [url=http://www.youtube.com/watch?v=Kvcvi1IioSY]Faces of Childhood Cancer video[/url] is in the process of being readied for use by the [url=http://www.fastercure.org]Pediatric Cancer Foundation[/url] for their upcoming fundraising and awareness mailer. I'm excited to see how that turns out! They are such an awesome group of people and the work they do to get us closer to a cure is so needed. The video on YouTube is over 3000 hits already (counting the 800 hits on the original version that had to be taken adjusted)!!

Updates:

Noah Fishman had surgery today to take care of the bowel obstruction that was causing him so much pain. Brandy told me that they were all surprised by how fast he's bouncing back! We continue to pray for a speedy recovery and the end of his pain.

[url=http://www.caringbridge.org/fl/sydneysims/index.htm]Sydney Sims[/url] prepares to leave Monday for NY for her surgery and treatment. Please keep her in prayers that they will be able to get her relapsed cancer into remission and give this wonderful little girl a chance at the wonderful life she deserves. I know her miracle is in God's hands.

[url=http://www.helphannah.org]Hannah Deal[/url] and her family are getting ready to head out for a second Make A Wish trip to Disney World and a Disney Cruise. Because they wanted so badly to give Hannah this gift before her body starts shutting down, it is a bittersweet trip. We pray that Hannah is able to enjoy her time and that the memories made will be precious and give them comfort throughout these days where their only option is to wait and pray.

Don't forget that Sunday is Peyton's day to shine on the [url=http://promos.tbo.com/telethon_2007/index.htm]All Children's Hospital Telethon[/url] at 12 and 5! She'll be there in her chunkalicious glory, watch and support her and all the fantastic work that is done at ACH. For those who are not local to Tampa to see the telethon,[url=http://promos.tbo.com/telethon_2007/index.htm] you can go here[/url] and they will be streaming it live and you can watch our family on live! [url=http://www.youtube.com/watch?v=kzu7klbWI_8]Click here to see the taped segment that will play of Peyton[/url] at the clinic (it was taped 3 weeks ago on the first day of steroids…..amazing what three weeks can do.)

f.r.o.G…fully relying on God
—Anissa

In the event that Peyton remembers things from the treatment, I hope she doesn’t remember today. I know that officially, her least favorite sport will be hockey…her least favorite movies will be “The Mask”…and her least favorite spa treatment will be a facial.

The mask.

We got to Dr. Cotman’s office a few minutes late due to a steroid breakdown that was so bad I actually had to stop the car and remind her to breathe. When we got into the room where she’ll receive radiation she took one look at the machinery and decided, on the spot, that this was absolutely the last place she wanted to be. I had to put her on the table and she started crying immediately….she didn’t stop until we finally left….poor girl.

The mask they have to make requires her to lay on her back with her head in this little cradle, then they put this large piece of plastic mesh that is warmed and wetted so that it is flexible over her entire face. They are gentle as they press it down onto her face to make a complete mold of her face and then leave it there until it dries into the shape….she no likey!!! I haven’t cried through a treatment in a long time, but it wasn’t her pain that bothered me, it was the fact that it wasn’t painful, it was sheer terror at having her face stuck in this plastic. I could barely see her little eyes through the plastic but what I could see was her tears dripping down into her ears and she kept pleading with me “Mommy, please take it off, I don’t love this mask, please take it off!” Once the mask was hardened, they connected it down to the table so that she was completely immobile, after having strapped in her little arms and legs to the table. It made me sick inside to look at her like that, so trapped and scared, I can’t even imagine how awful it was for her.

After the mask was secured, they went through the process of marking the mask and running through each position. It won’t take long for the actual procedure, but I know to her each time will feel like eternity. I had thought that I would be able to hold her hand through this run through, but they wanted me to leave her on the table and go behind the wall, the way it will be done in actuality. So I talked to her through the microphone and tried to soothe her, but I couldn’t touch her or even be near enough for her to see me. They needed to see if she would be able to hold still through the procedure or need to be sedated. Although she cried throughout the trial run, she held still and was so good.

This kid is my hero. Terrified, angry, and desperate to be out of the mask, she still held perfectly still when we asked her to. That’s more than I know a lot of adults could have done in the same situation.

We finally got out of the radiologist’s office with plans to be back next Wednesday and a promise to head straight for Cracker Barrel. Peyton and I had lunch at her favorite comfort spot and she finally calmed down to where she could talk to me again.

After lunch we picked up Nathaniel and Rachael and went to Lisa’s house to have the yard sale meeting, it was great and so many are getting things done that I know it’s going to be an amazing event. There is still much to do, but I refuse to get stressed about it

I got thrown for a loop this afternoon when the clinic called to let me know that our whole radiation/chemo schedule got shifted around. I handle things by doing my best to stay on a schedule and organize the heck out of treatment, so when they throw me a curve ball it really bothers me. Instead of starting on Wednesday which gave me Monday and Tuesday to get ready, we start on Monday…..with Saturday at Disney with Rachael and Sunday in St. Pete for the telethon, this was going to be a horrendous pain in the butt. This gave me Friday to get everything ready…one day to tackle a mountain of laundry that would intimidate the most fearless of heart, get my house in to some sort of order for my family, pack for the two of us and mentally prepare myself for the upcoming days. Meltdown approaching!!

As it turns out, my friends scrambled to take the kids so that I could get more done on Friday, Rachael agreed to wait until the following Saturday to go to Disney and then my friends jumped on the ball to help with Monday and Tuesday when Peter would have to work. So, for the most part, it is not as bad as I had thought it was going to be, with the help of those around us we’re able to pull it together so that we can make the change in schedule as well as possible. We have the greatest friends! Thank you all so much.

Peyton finished her last dose of steroids this morning….YEAHHHHHH!!! Although she has days ahead of her before the effects begin to subside, the fact remains that it shouldn’t get too much worse. It sort of accumulates in her system, so she’ll still be funky for a few more days before it gets better. But the end has come at last!

f.r.o.G…fully relying on God
—Anissa

In the event that Peyton remembers things from the treatment, I hope she doesn't remember today. I know that officially, her least favorite sport will be hockey…her least favorite movie will be "The Mask"…and her least favorite spa treatment will be a facial.

The mask.

We got to Dr. Cotman's office a few minutes late due to a steroid breakdown that was so bad I actually had to stop the car and remind her to breathe. When we got into the room where she'll receive radiation she took one look at the machinery and decided, on the spot, that this was absolutely the last place she wanted to be. I had to put her on the table and she started crying immediately….she didn't stop until we finally left….poor girl.

The mask they have to make requires her to lay on her back with her head in this little cradle, then they put this large piece of plastic mesh that is warmed and wetted so that it is flexible over her entire face. They are gentle as they press it down onto her face to make a complete mold of her face and then leave it there until it dries into the shape….she no likey!!! I haven't cried through a treatment in a long time, but it wasn't her pain that bothered me, it was the fact that it wasn't painful, it was sheer terror at having her face stuck in this plastic. I could barely see her little eyes through the plastic but what I could see was her tears dripping down into her ears and she kept pleading with me "Mommy, please take it off, I don't love this mask, please take it off!" Once the mask was hardened, they connected it down to the table so that she was completely immobile, after having strapped in her little arms and legs to the table. It made me sick inside to look at her like that, so trapped and scared, I can't even imagine how awful it was for her.

After the mask was secured, they went through the process of marking the mask and running through each position. It won't take long for the actual procedure, but I know to her each time will feel like eternity. I had thought that I would be able to hold her hand through this run through, but they wanted me to leave her on the table and go behind the wall, the way it will be done in actuality. So I talked to her through the microphone and tried to soothe her, but I couldn't touch her or even be near enough for her to see me. They needed to see if she would be able to hold still through the procedure or need to be sedated. Although she cried throughout the trial run, she held still and was so good.

This kid is my hero. Terrified, angry, and desperate to be out of the mask, she still held perfectly still when we asked her to. That's more than I know a lot of adults could have done in the same situation.

We finally got out of the radiologist's office with plans to be back next Wednesday and a promise to head straight for Cracker Barrel. Peyton and I had lunch at her favorite comfort spot and she finally calmed down to where she could talk to me again.

After lunch we picked up Nathaniel and Rachael and went to Lisa's house to have the yard sale meeting, it was great and so many are getting things done that I know it's going to be an amazing event. There is still much to do, but I refuse to get stressed about it

I got thrown for a loop this afternoon when the clinic called to let me know that our whole radiation/chemo schedule got shifted around. I handle things by doing my best to stay on a schedule and organize the heck out of treatment, so when they throw me a curve ball it really bothers me. Instead of starting on Wednesday which gave me Monday and Tuesday to get ready, we start on Monday…..with Saturday at Disney with Rachael and Sunday in St. Pete for the telethon, this was going to be a horrendous pain in the butt. This gave me Friday to get everything ready…one day to tackle a mountain of laundry that would intimidate the most fearless of heart, get my house in to some sort of order for my family, pack for the two of us and mentally prepare myself for the upcoming days. Meltdown approaching!!

As it turns out, my friends scrambled to take the kids so that I could get more done on Friday, Rachael agreed to wait until the following Saturday to go to Disney and then my friends jumped on the ball to help with Monday and Tuesday when Peter would have to work. So, for the most part, it is not as bad as I had thought it was going to be, with the help of those around us we're able to pull it together so that we can make the change in schedule as well as possible. We have the greatest friends! Thank you all so much.

Peyton finished her last dose of steroids this morning….YEAHHHHHH!!! Although she has days ahead of her before the effects begin to subside, the fact remains that it shouldn't get too much worse. It sort of accumulates in her system, so she'll still be funky for a few more days before it gets better. But the end has come at last!

f.r.o.G…fully relying on God
—Anissa

Well, if I thought getting her out of the house to do something fun was an adventure, imagine what it was like this morning when she realized she was getting a finger poke. Good times!

Once we got there it wasn't too bad. She cried through the quick finger jab, but she also cried through the weigh-in, paying our co-pay,and pretty much anytime someone made eye contact with her, so nothing new there. Her labs came back really good. Her hemoglobin was actually up to 9.9 (we get transfused at 8 or below), her platelets are well in the normal range at 213,000 and her ANC was over 4000….steroids are good for something I guess.

Our radiation/chemo schedule just gets more and more convoluted. Now we have to worry about the fact that the first day of radiation coincides with her scheduled spinal tap….the question is whether she can be sedated twice in one day….and if she is, then she can't eat all day…ugly any way you think about it. We also counted out the days and it looks like our plans to come home on the weekends is going to be a no-go because we will have to do her chemo on a Saturday, which means it's inpatient at the hospital…then we would have to be back on Sunday to prep for starting again on Monday…I want to make it as easy on her as possible and if that means we stay, we stay. Our friends the Powells are just minutes away, so we can look forward to some fun play time with Adelaine and her family.

I want to give a huge thanks to Pete's mom for taking Nathaniel and Rachael for a sleep-over tonight. That will keep them from having to go with me to St. Pete tomorrow and it gets them out of the house and away from their sister…maybe she'll let me come over for a sleep-over next. Tomorrow is our big day, the simulation.

Friday is a big prep day for our trip. Saturday I am taking Rachael to Disney and Nathaniel will be going with his Big Buddy Charlie to MGM studios courtesy of the [url=http://www.childrenscancercenter.org]Children's Cancer Center[/url]. We are looking forward to a rocking good time! The kids neeeeeed this time to get away from the Peyton-steroid monster and let loose. Plus it's going to give Rachael some special mommy time that she never gets enough of. Sunday is our time on the [url=http://www.allkids.org/body.cfm?id=214]All Children's telethon [/url]at 12 and again at 5….Pete and I have decided we need to sit down with the two older kids and talk about what we CAN and CANNOT say on tv…..and the lists should be fairly lengthy. No knock-knock jokes, no tickling the interviewer, no showing off the cool things we can do with our fingers, no farting and then giggling hysterically on tv…you know, basically sucking all the fun out of it for them. Just in case you somehow missed it, you can view [url=http://www.youtube.com/watch?v=kzu7klbWI_8]Peyton's taped segment here[/url].

With that all going on, Friday is my day to get laundry under control….and I laugh at the mere thought…and start packing up the basics of what we need. The awesome thing about the Ronald McDonald house is that they have the washers and dryers and it's set up for long term stay, so we don't have to pack the whole world like we do when we head to the hospital…there actually a good chance of getting a shower and clean clothes EVERY day!

I have some AWESOME news about Noah Fishman…his dad updated us and let us know that there is no signs of relapse! Praise God!! There appears to be a bowel obstruction that is a fairly common side effect from his previous surgery. Noah's finally getting some relief from the horrible pain he was suffering. The family has been moved to Tampa General so that if they decide that it requires surgery they can jump right on it. Let's keep the prayers going for this family!

I also want to send out a huge thank you to all the supportive moms and dads I have met through this cancer journey. We email, we cry and laugh during support group, we visit each other's site and just give each other as much encouragement as we can through it all. I never imagined that in Peyton's cancer we would make such amazing friends and find this family to help keep us going. This is a huge blessing that we never expected and God just provided us with this network of support and we are so continually thankful for all the ways, both big and small, He shows us that He's working in our lives.

f.r.o.G…fully relying on God
—Anissa

We enjoyed a water gun fight over the weekend…no holds barred.

What a year can do….this is Peyton last year, almost a year to the date…

Yes, maybe it's time to invest in a new bathing suit…it was like trying to squeeze 10 pounds of potatoes in a 5 pound bag.

I'm looking forward to the day when Peyton is grown and out of the house. I'm going to pick one day of the year and call her every 3 minutes and yell "Make me green beans!! Make me scrambled eggs! I'm stinky!"….then hang up on her.

But until that day, I'll just stand in the kitchen, scrambling eggs at 4:22 in the AM, thankful for each day I have with her. The moments are getting unhappier each day, she's miserable and that's probably an understatement. She's hungry, but her tummy's full…she's exhausted, but because she's got terrible night sweats and aches and pains, she can't sleep well….her neck has completely disappeared into little fat rolls. In fact, just as I wrote that, she walked over to me, glared at me hatefully and then walked away without a word….it's as if she needs to come and let me know that "Hey, this really stinks and I just wanted to share that with you", but feels that the scowl is more eloquent than words could ever be. Frankly, it is.

Nathaniel and Rachael are back to being a little freaked out by her. They are never quite sure whether their hugs and kisses are going to be met with a smile or a backhand….it's about 70/30 in favor of the slapping at this point.

Today was our weekly trip to Lil Tales at the Children's Cancer Center. I had to give Peyton a bath before we left…because of the terrible night sweats she's pretty stinky…Pete made the comment that babies don't get BO….he was sadly mistaken! She cried through the whole bath and then sat naked in the tub long after all the water had drained because she was seriously ticked off and wouldn't let me get her out. There sat 35 pounds of angry, swelled, shivering, naked Peyton…..I would have run and got the camera but she probably would have spit venom at me and then I wouldn't be here now to tell you all about how hard it was for me not to laugh. Pete and I were talking about how people will see the skinny, perky Peyton in the ACH telethon video and then see the her that steroids have produced and think "Whoooa, that's not the same kid!" As Pete so eloquently put it, it'll look like it's a thick little body double.

Anyways, I did finally get her to get out of the tub and into some clothes….unfortunately that ticked her off too because she wanted to wear something that wouldn't fit and frankly, that makes any woman mad. Dressed and out the door, when I went to get her in the car she realized that I was actually going to make her leave the house and she reacted….well, have you ever tried to give a cat a bath?….that was pretty much her reaction. Arms and legs spread out….yowling…fighting….I can only imagine what my neighbors must have thought of that…..then followed by 20 minutes of the new Peyton musical single "I don't love this car, I don't love the Center, I don't love this carseat". However, Nathaniel and Rachael were thrilled to be going.

Once we got there she spent all of 6 minutes out with the kids and volunteers before she came in to where the moms hang out. She ate some chips, she pouted because I wouldn't take her home, then she crawled into my lap and passed out. Again, 5 pounds of dead weight in my arms…I swear that kid was putting on pounds as she laid there. My arm fell asleep, my leg fell asleep….most of my body napped right along with her. But when it was all over and she woke up, she was in a much better mood and was actually pretty happy for the rest of the afternoon.

Tomorrow we're heading to the clinic for a finger poke, we'll see if she does need those red blood cells. Then Thursday we go to St. Pete to the hospital for the dress rehearsal of the radiation treatment. Seeing as how much she LOVED having to leave the house today, she should be crazy about them trying to fit a mask over her face…I have this mental picture of them having to strap her to the table to get the mask on, then when they pick her up it looks like Anthony Hopkins in Silence of the Lamb….wrong, I know it, but I have a wrong mind sometimes.

Please pray that it goes well, I'm worried because her first impression of the radiation process will be under steroids, it will taint the whole thing. Even though she'll be well off steroids by the time she starts treatment, I'm hoping she doesn't remember it badly and just react to that.

We've had no word from our friends the Fishman's about Noah's MRI, today at the Center, we all were feeling the same sense of dread and anxiety in the face of Noah's news. There is no way to explain how it hurts to hear of another child who has been doing so well out of treatment to relapse, if it is their child, can it happen to mine. We all share the pain of the family and our fears are renewed. We ask for special prayer for Noah, his parents Brandy and Jeff and his siblings Jacob and Abby…their wonderful family is going through so much uncertainty and worry right now. I'm faithful to the belief that God's plans are bigger than our pain and that He will provide the comfort and strength that they need right now.

f.r.o.G…fully relying on God
—Anissa

ps. I am working on updating the "Resources and Links" section of the website to offer help to more families. If you can think of a resource that should be added please email me.

Thanks!