Hope4Peyton

Just about the time I get comfortable with Peyton's actions and reactions regarding chemo, she pulls a new trick out of her hat. I know that when she was first diagnosed I pictured her being SICK all the time…pale, weak, wasting away to nothing, vomiting and probably LOOKING like death warmed over….but for the most part she's done remarkably well. She's been pale, she's been weak and looked rough, but she's always bounced back relatively quickly.

After her radiation treatment and her chemo, we went into the pharmacy at the hospital to pick up some meds.

"Mommy, I'm choking."

I checked the collar on her dress to make sure it wasn't snagged on her port.

"No, you're fine, you're not going to choke."

"Mommy, I'm going to choke!!"

"No, honey, you're ok, you're not choking."

Projectile vomiting commences…..

"Oh. You mean you're going to throw up."

All over the place, all over this poor man's shoes, all over herself, it was just awful. But worse, it freaked her out so bad. I can count the number of times she's thrown up from chemo on one hand, and I'm so thankful for that. You'd think after having your head strapped down to a table, getting poison injected into your body, a little vomit would be a cake walk. Not so much. She's such an accommodating vomiter though. She threw up in the pharmacy where they could call clean up duty from the hospital….then she waited until we got outside to do it again…then we got all the way back to the RMH and in our room before she decided to start again…we made it to the bathroom.

After it was all over she took a nice nap, she was exhausted and feeling crappy. I hated to wake her up, I would have let her sleep all afternoon, but she had let me know that she really wanted to go to the Brad Richard's bowling party today.."to go see Daddy!"….and I knew that if I didn't at least give her the choice of saying no, she'd be miserable to live with. Surprising the heck out of me, she bounced off the bed and got her shoes on and was ready to rock and roll in just a few minutes…and I know I brushed her teeth so hard I must have taken off a layer of enamel.

We got to the bowling alley and Peyton was ready to hit the lanes. It was such a fantastic event, lots of kids, lots of families, lots of friends and familiar faces. It was so much fun to be with all our friends, letting the kids just run and play and bowl. Brad Richards is a truly admirable person to take the initiative and do great work for all our kids, giving to us so generously and making an effort to make our lives richer somehow. The kids were running around like maniacs, eating and just letting lose with their inner crazies. We got to celebrate the birthdays of some of the kids, and have a special moment of thankfulness for some of the kids who've completed treatment.

I still don't know if I totally understand how Rachael "accidentally" wrote on Peyton's head….

Nathaniel spent the majority of his time bowling, he played hard and did really great. He did stop to eat, enjoying the pizza and soda and CAKE! Rachael spent most her time fluttering from group of friends to group of friends, she did arts and crafts and ate lots of CAKE! Peyton bowled for a little while, under the grand tutelage of our friend Cody. Peyton is in love with Cody, his mother Kay and I are tossing around the idea of trading a donkey and some beads and maybe a small dowry and just arranging the marriage now. Cody's 13, but I think she's picked a winner….he plans to be an orthodontist and she's going to need braces for a long time with the binky-addiction she has….could be a match made in heaven! This young man spent the whole time just helping Peyton bowl, do crafts, getting her food and playing with her….I've started calling him my future son-in-law. Cody's sister Dana is a remarkable young woman who is a lymphoma survivor, and this family has just supported us and lifted us up and seeing Dana beautiful and healthy always renews my hopes and dreams for Peyton.

I teased Cody that this will be the picture we put on the wedding invitations some day.

It was great to just get away from treatment for a little while and spend minutes laughing and joking with wonderful friends. Sharing the woes and worries of cancer life is easier with them than it is with our non-cancer friends. You always feel like you're the grey cloud hanging around when you talk about all that your child is going through to people who aren't part of that life….I sort of wonder when someone's finally going to say "Get over it!"….and I know that I can just vent to these folks and they understand completely, not only what we're going through, but the need to just get it out of my system.

After we left and said our sweet goodbyes to Nathaniel and Rachael and Daddy, Peyton napped on the way back to the RMH. Tomorrow is more of the same, radiation in the morning, chemo is in the afternoon, and I am hoping that Peyton will feel well enough to head to the Children's Cancer Center for playgroup in between. I'm praying that she gets through chemo without all the violent side effects tomorrow, but am preparing for the worst. I don't know if it's because of the chemo…the combination of chemo/radiation….radiation alone…a viral stomach thing….filling her full of ice cream and letting her hop up and down on the elevator….it doesn't really matter.

We are supposed to get a sinus CT later in this week to see what's going on with a chunky cough and stuffy nose she has. Her ears, throat and lungs were all clear, so they think it might be a viral bug or sinusitis. Her counts were pretty lousy this morning….platelets were at 60K, HBG was 8 and ANC was 400…these numbers mean that everything is lower than they should be, more good times!…so she'll be getting both packed red blood and platelets on Wednesday.

I'm so glad that regardless of the rather unhappy afternoon she had, she was still smiling and laughing and able to have a good time with her family and friends. These times are so special and the memories are precious. It's fun to see her wrapped up in loving these people who are just enamored with her as well.

Please pray for Peyton and her sweet wonderfully courageous friends who battle this thing called cancer. They sacrifice so much in the fight….the carefree life they should have, any sort of control over their bodies, the health that so many take for granted….and they do it without bitterness or self-pity. Peyton never has to remind me that no matter how tired I am, how worn down I feel and how much I'd like to curl into a ball and just pretend none of it's happening….she never gets that privilege…she just lays her smooth little head on my shoulder and prepares for whatever happens next, safe in the comfort that the Lord provides her.

f.r.o.G…fully relying on God
–Anissa

PS…..I want to send out special thanks to some people who've given Peyton extra reasons to smile this week. She's so loved getting the cards and packages and I truly wish I could box up a little bit of her happiness when she opens these things and mail it to you. Thanks to Steve, Melissa, Angel Karalyn, Denise, and Amanda.

**Extra special thanks to all those wonderful people who have been dropping meals off for Pete and the kids!!! And thanks for my dear wonderful always willing to drop everything and help in some way friend Chris Toth for organizing it.

American Express threw out this idea called [url=http://www.membersproject.com/intro.htm]"The Members Project"[/url]. The idea is that AE card members spend 1 dollar, and for that 1 dollar, they get to post an idea for a charity. The ideas I've read have ranged from sending movies and dvd players to soldiers overseas to specialty food service for sick pets….I kid you not. So, I spent my dollar and I posted an idea.

It's [url=http://www.membersproject.com/intro.htm]Project #02733, called Pediatric Cancer Family Support[/url]. The idea is pretty much to copy what the Children's Cancer Center has offered our family in the means of support, encouragement, enrichment, and the chance to network with other families and spread that idea to many other areas of the country where the need for pediatric cancer support groups is needed.

At the end of the project timeline, August 8th, American Express will pick a winner based on the idea that was voted on most often by card members. Then all those dollars spent by members to post their ideas will go to funding the chosen winning project.

If we can get word out, get as many AE card carrying members to take the time to log onto the website and just vote for this project, why can't we make this happen?? It costs just a dollar to vote, to take a moment of the day and make this idea a reality. You DO have to have an American Express, but if you or someone you know has one and would be willing to take the few minutes necessary to [url=http://www.membersproject.com/intro.htm]vote[/url], do it!!

f.r.o.G….fully relying on God
—Anissa

Pete and the kids got here to visit on Friday afternoon. It didn't take long for chaos to ensue….sibling arguments, stuff everywhere, complaints from the weekend manager because of the noise….yeah, the MAYHEWS have landed. I think that we are the Ronald McDonald House version of Van Halen checking in….room trashed, terrorizing the staff….basic rock star behavior.

We had such a wonderful weekend. Rachael and I took off nice and relatively early on Saturday for Magic Kingdom. She's my one that handles these separations the worst, usually she's the one that calls crying or can't sleep…and we had almost gotten into the park when she burst into tears with the need to call Peyton and say hi. They may torment the ever living daylights out of each other, but they do need each other. Yin and Yang I guess.

Magic Kingdom with just one kid is absolutely rocking fun! No one is complaining because we're waiting on a ride they don't want to go on, we can do everything at leisure, and you can just totally concentrate on how magical the park truly is through your child's eyes. The rides have gotten slower and smaller as I've gotten older…and bigger….but being with Rachael just brought out the excitement and belief of each ride and show. We laughed so much, giggling through the shows and she was so brave on Space Mountain. I was so thankful for the moment she said that she was hungry, tired and wanted to leave after the next ride. It was only about 6 PM and she was ready to roll….sweet!!! The park was open until 11 and then there was a special time until 1 AM that we could have gotten in on, but I was totally into leaving as soon as she was. She was passed out in the back seat before we ever got on the highway. Last night she kept coming up and hugging me and just whispering how much fun she had….just me and her….and I would thank her for sharing a special day with me, that was awesome. Sincere thank you to the [url=http://www.childrenscancercenter.org]Children's Cancer Center[/url] for giving us the opportunity to go.

teWhile we were away at the Sweatiest Place….I mean, Happiest Place on Earth…..Pete, Nathaniel and Peyton spent the day exploring some of St. Pete's offerings. They went to the pier and enjoyed the aquarium there and got to have some quality time just hanging out on the water. Because Peyton doesn't have the ok to be out in water that's not treated for bacteria, they couldn't really head to the beach, but they had a lot of fun looking at it.

This morning I was awakened by Nathaniel poking me in the shoulder…."I'm hungry"….now, I expect this kind of thing from Peyton, or even Rachael, but Nathaniel's been able to get his own breakfast for a long time now. I couldn't quite put it together why he was waking me up to tell me this, until I remembered that he isn't allowed to roam around. So Nathaniel and Rachael and I headed downstairs to explore the breakfast options while Peter and Peyton continued to snooze. After food has been dispensed, Nathaniel looks at me and says "Mom, you still look tired." I told him I was…..would you believe what this kid says to me?…"Why didn't you stay asleep?"…..I considered punching him for just a second!

We really didn't do much for the day. We went to the craft store and picked up fun supplies, paints and paper, glue and safety scissors and stuff to keep out little hands busy. We ate lunch at Applebees and then went back to the RMH house. Pete took the older two kids downstairs while I worked on convincing Peyton to take a nap….it didn't take a whole lot of convincing for either one of us to pass out. But while she was still snoozing Pete and the kids had to take off for home, so it was with sweet kisses and hugs and promises to see each other Monday night, that I sent them back to Brandon. When Peyton woke up she looked around for a while and then asked when Daddy was coming back up from downstairs….I told her that they had to leave and go home…she ran to the big windows that face the parking lot and said "I can't see Daddy's car!"….well, that's because it's at our house now…..oh, she looked sad for a moment….then she said "Then can I have chips?" This kid takes the idea of comfort food to a whole new level.

Tomorrow starts our final 5 days of radiation!! We have 8 AM visits for radiation and then we go to the clinic each day for chemo shots, but we have no spinal tap this week, so hurray! for that. Monday afternoon we are invited to go a going away party for Brad Richards from the Tampa Bay Lightning. This is an event that he puts on for all the families who've been a part of the [url=http://bradrichards19.com/]Richy's Rascals program[/url] that he provides, and a way for us all to say thank you and goodbye as he takes off for Prince Edwards Island for the off-season. It's going to be a blast as many of our [url=http://www.childrenscancercenter.org]Children's Cancer Cente[/url]r and [url=http://www.fastercure.org]Pediatric Cancer Foundation[/url] friends will be there to bowl and eat and have a good time.

Friday afternoon we'll get to pack up and head home after our final treatment. I am so anticipating getting home and being back with my whole family. This little taste of being separated…even though they've been able to come and see us any time and we've been together more nights than we've apart….has really made my heart hurt for all the families who are pulled apart for whatever treatment they are getting. Whether it's babies having heart surgery, cancer kids getting chemo, little ones who have to have specialty surgeries…the time when you can't be with your family is so hard and you yearn for the time when you have them all in your arms again. These families that are forced to be apart for weeks and months of time, they have special prayer in my heart because this added strain on top of everything else is just overwhelming.

Please pray for Peyton to continue to do well throughout these final days of radiation. When this is completed, we look forward to starting maintenance, for our lives to (presumably) become a little more stable and for treatment to not be as up and down as the last year has been. It's hard to believe that we're 11 months into this, the time has both flown and crawled by.

f.r.o.G…fully relying on God
–Anissa

** Our friend [url=http://www.caringbridge.org/visit/samanthalee]Samantha Lee and her mom Joanne[/url] have started up a special charity program….this is called [url=http://www.braveryhearts.com]Bravery Hearts.[/url] Bravery Heart necklaces and bracelets are sold to provide a very special program to cancer kids in treatment. This program provides them a necklace and for each treatment a child receives….including things like transfusions, spinal taps, surgeries, port accesses….they receive a special bead that marks that treatment. The hospitals that offer this program have wonderful responses from the patients. All Children's Hospital does not provide this program for our cancer kids yet, and Samantha gets treatment at St. Joseph's Children's Hospital, but we fully support, and hope that you will too, their efforts to bring this program to a hospital in our area. If we can get St. Joe's to get involved, I hope we can get All Children's to join in as well.

Please take a moment to check out the[url=http://www.braveryhearts.com] Bravery Heart[/url] program, but if you would like to support this wonderful program, please go to [url=http://www.caringbridge.org/visit/samanthalee]Sam's website and purchase from the Lee family[/url].

Radiation was a breeze yesterday, and I made plans with them to schedule Peyton's appointment a little later in the morning. That 7 AM appointment was just making her miserable, so this morning she was just waking up at 7 AM and she woke on her own instead of me having to do it…..that makes all the difference. We went for chemo after and it took forever to get her seen, but once they got her meds it was quick and simple. However, she was due for an echocardiogram in the afternoon and shortly after we returned to the RMH from the clinic, Peyton threw up a few times. That's not her normal gig, we've been blessed that she doesn't get sick to her stomach from the chemo, but with the chemo and radiation mix it really hit her hard. I had to call the cardiologist and reschedule her appointment….

"Peyton can't make her 3:00 appointment, she's sick from the chemo."

"Can you make it at 3:30?"

"You don't understand, she's throwing up and I'm not going to drag her out for more tests today."

"Can you bring her right now?"

"Sure, as long as you don't mind having your tech and equipment covered in vomit, I can be there in 10 minutes."

PAUSE….SILENCE…..

"Let me see what we have open for rescheduling her."

"That would be great. Thanks."

They were very gracious about letting me get her in the schedule for two weeks from now….but I was starting to wonder what barrel bottom they scraped this receptionist from.

So, after a nice nap, she felt fine, no more throwing up and she was ready to rock and roll to the [url=http://www.childrenscancercenter.org]Children's Cancer Center[/url]. It was an exceptionally special trip because she loves to go there and we'd get to see Daddy, Rachael and Nathaniel as well. The last few times we've been there she's been attached to my side to the point we were starting to look like some freaky conjoined twins. Surgical separation was our only option….not even potato chips could do the trick.

She had a wonderful time last night, doing crafts and actually playing with her friends. We had a great group night, four kids have finished treatment and it's always awesome news!!! I got to see Noah Fishman, who looked fantastic considering he just had major surgery. He looked skinny and a little pale, but still smiling that gorgeous grin of his and running with the rest of them the best he could.

Peyton and I finished radiation and headed to the clinic to see if she'd need the red blood cells that we thought she'd need based on yesterday's cbc, but it actually went up just a little bit. Enough that the docs sent us away transfusion-less and with the ok for the weekend. I'm figuring that means we'll be in for it the first of next week, but that's two whole days free of the clinic and the MASK.

We saw a gentleman leaving the radiologist's office this morning, he had obviously completed his treatment and he had his mask to take home with him. Peyton took one look at that mask and said "his mask has a BIG nose!" Compared to her little Asian nose, she was definitely right.

Peyton's feeling a little worn out, she's got a runny nose and a snarky cough, but the doc listened and wasn't concerned. She got her port de-accessed today for the rest of the weekend.

Pete and the kids head down today to spend the weekend with us. Tomorrow Rachael and I are making a Magic Kingdom day of mommy and me time! VERY excited about that. She's tall enough to hit all the big rides at MK, so it's perfect and we don't have to go to any of the "stupid stuff"…..that would be stuff like the "Hall of Presidents" and "Country Bear Jamboree"…she's princess castle all the way.

I am just anticipating some quality time with my kids and husband this weekend, this time has definitely given me a chance to really miss them. I think that's important sometimes.

Yard sale stuff is still in the works, I'm constantly getting calls and emails that things are getting done and prepped and I have a full suburban of stuff for the sale that was brought to me!

We are asking for special prayer for [url=http://www.caringbridge.org/fl/sydneysims/index.htm]Sydney Sims[/url] as today was her surgery day in NY. I pray that she comes through the surgery well, that the Lord guides the surgeon's hands to remove everything they possibly can to give Sydney the best chance at recovery and remission.

I am so continually thankful for all the support and love we've gotten through this site. We started it as a way to just keep people up to date on how she was doing through chemo and it has grown into this almost daily journal of what life is like when you're putting your faith in God's plans for you and can just sit back and watch where He takes you. Thank you all for encouraging us and praying for us and for being a constant source of pick-me-up when we need it.

f.r.o.G…fully relying on God
—Anissa

Not that anyone likes to wake up at 6:00 AM, but Peyton opened one eye this morning and said "It's still dark" and flopped over on her belly. She was one ticked off little girl when I actually dressed her and put shoes on her. I didn't even bother trying to brush her teeth, I figured we could do it later when she wasn't mildly psychotic. On the way to radiation Peyton struck the final blow….

"Mommy, don't talk to me on the microphone today." (This is how I communicate with her when I have to leave the treatment room)

"You don't want me to finish the Three Bears?"

"Yes, but don't sing."

Ok, I never had dreams of American Idol, but what happened to kids thinking their mother's voice was comforting?

We were finished with radiation by 7:20 this morning and headed back to the RMH to indulge in an early nap. That was niiice! Then Angela Powell brought Adelaine over so that she could spend a few hours playing with us today. That was much fun, the girls did so well together and are just adorable together. We got a call around 9 from Penny Hawkins, Nikki's mom, that they were discharged and do we want to Paneras? Please! Does the pope wear a funny hat? Does a bear…..never mind.

We had coffee, pastries and chicken soup for the two littlest darlings. They ate about 6 spoonfuls combined, but they had a really fun time. It was great quality time for me and Penny to get to talk. Sometimes you just click with people and I feel really lucky to have met Penny and her sweet kids.

After our Panera break, I took the girls to the clinic so Peyton could get her chemo. It was really funny because the nurses kept seeing Adelaine and then looking for Angela….you could almost see the moment that it occurred that she'd been left there. Then I'd explain that she was spending the day with us and they thought it was very sweet that Adelaine held Peyton's hand through her chemo push. What a sad playdate…come on, girls! Let's go watch them shove poison in Peyton's body and then we'll get a popcicle. But we did manage to have a lot of fun anyway, the RMH is set up for some mad kid play time!

Then Pete and the kids finally got down to see us. It was so awesome to see them walk in, it felt more like 200 days than 2. I was just completely filled with the sense that these people are my life and my love for them just fills my heart. Then the kids started squabbling, they were driving each other insane and I remembered….oh yeah, these crazy little people are mine. We spent the rest of the day playing games, eating, and playing….Rachael went with me to Publix for a grocery run and wanted to know why she couldn't just come down here and stay with me and Peyton. Her little face was so sad, it broke my heart. I know that our Saturday Disney Trip is going to be a great time for her and mom to have some much needed one-on-one time.

Pete got to meet some of the really nice families I've met since getting settled in at RM, and we had the most pitiful attempt at a conversation ever with a family from Puerto Rico. All those hours of sleeping through Spanish class….wasted! This family is here with their 5 year old daughter who has ALL, and she relapsed in her spinal and brain in December, she's here waiting on a bone marrow transplant. She's bald, round and chubby right now, she looks like she could be Peyton's older sister. Too cute. But that's a scary thing to hear, she's relapsed with the exact same diagnosis that Peyton has, we think the parents said that she had a stroke due to the relapse in her brain. But we could only understand about every 9th word.

So, we found this website where you put in the English phrase and it translates it to Spanish for you and vice versa….I'm going to have a conversation with them tomorrow! It may be slow and painful, but I WILL talk to them. Nathaniel managed to tell them "Strawberries are red" and "My birthday is January", but that really didn't cover the important stuff.

Now my bald beauty is sleeping peacefully. She's exhausted from the chemo, radiation schedule and her body is just tired. The doc and I both noticed that she's started dropping her left foot again, with a mild limp from the Vincristine. I had hoped that after lowering the dosage last time the effects kicked in and giving her time to recover would help, but after three full dose treatments she's starting to complain of the achy legs and I'm seeing the limp again. When all this radiation is over, I'm going to have to get her into some physical therapy.

We're looking forward to a nice full day tomorrow. She got to bed earlier tonight, so hopefully she'll get up easier tomorrow. Her appetite has ground to a pretty fine halt. Besides popcorn and half a piece of pizza, she didn't eat much all day until dinner. These next three weeks of chemo will really take it out of her, so I'm glad she's got the extra to lose right now.

We have radiation in the morning, we have chemo after that, we have an echocardiogram in the afternoon, then we head to the Children's Cancer Center for family group night. I'm hoping she'll be up to enjoying the time with her friends.

I can't explain how much I appreciate the emails, posts and calls from all of you. Your support and encouragement help lift us through every day. We love you all!

f.r.o.G…fully relying on God
–Anissa