Hope4Peyton

I shared with another friend that with not being able to get squeezed into the Ronald McD house, homeless shelters really get a bad rap….it's not THAT bad!

Seriously, though, it worked out that we got a room at [url=http://www.rmhctampabay.com/stpete.htm]Ronald McDonald[/url], and its a wonderful facility. I never ever considered that I would be staying at one with MY child, but since we have to do it, we sure appreciate its existence. On one hand it's great to know that someone got to go home, on another it's so sad that as soon as someone leaves, someone is lined up to move in….both houses are so full and that's a LOT of sick kids. I've met a couple of newly diagnosed cancer families and two parents with newborns having heart surgery…pray pray pray. Each family who stays has a chore associated with their room number, that is their job to perform while staying at the House. Mine is to straighten up the laundry room and clean out the dryer filters and take out the trash….no kidding….just like home!

Peyton slept like a rock this morning, we had the most horribly rude roommate that played a video game until 4 AM when I finally threw back the curtain and said "You have to either turn that off or take it to the hallway." Yes, I said it just like that. No please. No thank you. Just make it stop. He took one look at me, and must have read the "I haven't had a full night's sleep in 4 weeks, try me!" look and immediately turned it off. He was most happy to see us get discharged this morning, he can torment the next family who's too nice to tell him to shove it.

But Peyton slept like a rock and slept late, until almost 10 AM. Why she doesn't do that at home, I couldn't tell you. But we got discharged and headed straight to radiation.

The transformation in her attitude towards radiation and that mask has been nothing short of miraculous. I know that all the prayers have really worked and it was a huge blessing to watch her walk in, play with smiles and giggles and laughing with the radiation techs. She was totally calm when they put the mask on her, she didn't shed a single tear today. She didn't even need to hold her binky, she said "I don't need it right now"….WOW! She was even ok with me taking pictures and although you can't see it through the mask, she was smiling.

It went a little longer than expected and she was antsy to get out and remove the mask by the end of treatment but she did remarkably well and it was such a 180 turn from Monday's treatment. Seriously, they were amazed to see what one more day steroid free did for this girl! She's already asking when we're heading home, it's looking like it'll be a long two weeks…take the "Are we there yet?" and amplify it by a million.

Tomorrow we do more of the same, we head to radiation at 7 AM, and our chemo clinic visit is at 10:45, so we have some nice downtime in the morning. If things work out, [url=http://www.hope4adelaine.org]Adelaine[/url] is going to come and spend some time with us, keeping Peyton busy and letting them have some fun play time. She may even get to go with us to the clinic. Our friend [url=http://www.caringbridge.org/visit/nikkihawkins]Nikki Hawkins[/url] is getting discharged tomorrow from her last inpatient chemo visit…only 1 more outpatient chemo and she's completed treatment!! We are going to try to orchestrate a meal with them depending on when they get out of the hospital.

Peter is bringing the kids to come spend time with us after Bible School. We're so excited to see them, Peyton was actually dancing around the room when she heard they were coming….absence does make the heart grow fonder apparently. I'll lay money on it taking about 20 minutes for her to be ready for them to go. But I know she's super excited to see Daddy again and he'll be so happy to see her changed back into the sweetie-pie she normally is. Welcome back, Peyton!

I am so tired right now, but glad to be settled into where we'll be staying for the remainder of our trip. I actually put clothes in the drawers…what can I say? I'm an optimist. The room is like a really nice hotel room, with two queen sized….check this out…SLEEP NUMBER beds!! I'll probably sleep better here than I would at home! Peyton's actually sleeping in a bed by herself, so I'm sort of hoping that if we manage to get her used to it for two week, she'll decide it's the cool thing to do once we get home. I may even have Pete rearrange the girl's room to get the bunk beds down so she can be transitioned into her own bed….again, I'm an optimist.

The optimist must get to bed so I can be up at rooster crow o'clock in the AM!

f.r.o.G…fully relying on God
—Anissa

ps….for those who were interested in sending a card or some cheer to Peyton during her time away from home, the address is:

Peyton Mayhew
c/o Ronald McDonald House East
401 7th Avenue South
St. Petersburg, FL 33701

The alarm went off at 5:45 this morning…in the AM! We managed to get up and moving and to the hospital on time, primarily because I didn't sleep last night. I couldn't stop thinking about the radiation and stressing about not waking up on time and missing her appointment and being published in some big book of "Terrible parents who can't get their lazy butts up to take care of their kids"…or something like that. I was also worried all night that Peyton would pee the bed, and it is Adelaine's bed….so that was an extra special anxiety.

When we we got to the radiation office Peyton immediately started clinging to me and crying that she wanted to go home. We sat and talked about what was going to happen and that it wouldn't be like it was the last time. Once she was laying on the table, she got teary and although she was so unhappy, she laid nice and still so that they could refit the mask to her face. I talked to her from behind "the wall" and she did cry throughout, but was able to hold still and keep her head in place. The procedure took a total of about 10 minutes, it felt like so much longer.

She was mute and angry when we left the office and was still very out of sorts when we got to the clinic. I will personally invite each nurse to come visit her at the Tampa clinic and see how well she does with getting her port accessed when she's not on steroids and in a rage from being strapped to a table. She threw a nasty fit over the port, but after talking to her and just letting her work it out, she finally started talking and smiling again…mind you, she hadn't eaten all morning. Dr. Barbosa gave us the clear to head to the hospital and get something to eat while they got our paperwork ready for admission. Once I sat a tray of eggs and sausage in front of her she was the golden child.

It was funny to be in the hospital today because we had tons of people say "Hey! I saw you on tv last night." Or they told Peyton she was a movie star, which she ate up! She even got her breakfast discounted! Ahhh, celebrity has its privileges.

We spent the rest of the day completely lazing around. Peyton ordered room service no less than 6 times…it's 10 pm and we're waiting for one last meal to come up. She took a marvelous nap and has felt good to just watch movies, play games, draw pictures and EAT. We happened to be here while our little friend Carly Bowman was here with her sister Lily. This is the family that has had two of their children diagnosed with totally different types of brain tumors. They are so sweet and just overwhelmed, how I wish there was a way for me to take this away from them and make their life simple again. But they are holding strong and coping with the situation as well as they possibly can.

Nikki Hawkins and her mom Penny are also here today! Nikki is here for her last inpatient chemo treatment. That is HUGE and I am so excited to know that she's almost done with treatment. She'll still be carefully monitored for a very long time and they have to start treating her to fight the effects that the chemo and radiation have had on her physically and mentally. She still has a serious battle ahead of her, but she is so brilliant, spirited and strong I know that she will beat all the odds. Penny, Amber (Carly's mom) and I had the fun chance to go down to the cafeteria and have lunch together. That was a nice surprise.

Tomorrow she'll get her chemo first thing, then we'll get discharged to head to radiation and then….well, we're not entirely sure. I called the Ronald McDonald house today to see if they're going to have a place for us tomorrow and I was disturbed to hear that they were still completely full. Unless someone gets discharged by tomorrow afternoon, Peyton and I may be bunking down in the truck in front of the hospital! Seriously, we are not so far from home that we can't just head home and leave for the hospital each day at 6 am, but it wasn't how we wanted to week to go. We'll make it work however it turns out.

Peyton is almost two weeks from her last chemo treatment and almost 5 days from her last steroid treatment and her counts are already showing the effects. Her ANC (her ability to fight infection, LOW is anything below 500) dropped from 4000 on Wednesday to 800 today. Today she received Methotrexate in her spine, Cytoxin and Ara-C in her port. She will get the Ara-C each day for 4 days. Her counts should continue to drop to the point where she's just laying out the mat to any and all bacteria and infection and she'll probably require an infusion before the week is out. But her smiles are coming back, her laughter is wonderful to hear after weeks of tears and anger…non-steroid-rage Peyton is slowly coming back and it's fantastic!

Well, Peyton's food just showed up…..again….and she's filling up before a long night with no midnight snacks…I just hope she sleeps through the night. I will be curling up with her on the hospital bed and cuddling with this sweet girl tonight….if she doesn't pee on me.

I got to talk to both Nathaniel and Rachael tonight and they both had wonderful times with friends, playing, swimming, just being completely distracted from our absence. I'm continually thankful that my kids are the type that are able to roll with what life throws at us, God has provided them with some mighty resilient spirits and it's never been more apparent than in the past year.

I'm so thankful that Day 1 is done….we are just a few hot dog bites away from having it completely behind us. Yeah!!!

Thank you all for keeping Peyton in thoughts and prayers.

f.r.o.G…fully relying on God
—Anissa

Last night was a restless night for both Peyton and me. She was having totally weird dreams (including the mumbled question “Did you get the dinosaur napkins?”) and I was worried that we would wake up late and miss the telethon.

Last night I finally finished getting all of our stuff ready for Peyton and me to head down south for a mini-vacation (ha!). I had this glitch in scheduling that meant I would need a place to stay for Sunday night because there were no rooms available at the Ronald McDonald house, and we would be inpatient on Monday, so we could just sleep in the truck for one night, right? As much fun as that would have been, no….the Powell family opened up their house so that Peyton and I could come have a sleepover.

That sounds like it would be tons of fun! Unfortunately, Peyton is coming off steroids and Adelaine is going on them…”Mr. Doug” and I considered the probabilities of putting the girls into a caged match and seeing who would win. While Peyton has weight and brute strength force, Adelaine hasn’t put on any poundage yet, so she’d have speed and agility in her corner…unless Peyton managed to sit on her, I think Adelaine would win.

Anyway, this morning we made our way to the telethon, being filmed at the All Children’s Education Center, right by the hospital. We had to drive separately so that Peyton and I would have a vehicle while on our radiation getaway. Last night we had seen Peyton’s taped portion on TV and had a little freak-out. It was about 11:30 PM that we saw it and Pete looked at me and said “Are you sure it was noon that we were supposed to be there and not midnight?” Why I thought that they would ask me to bring my kids to the telethon in the dead of night??? But we were ok, our times were definitely day hours.

Our first interview was with Jen Leigh, she had stopped by to meet us before we went on and was extremely friendly and got Peyton to smile and talk to her, making her comfortable so that when the camera was on she would answer questions. Which she did….her great TV debut involved these words “scrambled eggs” and “Cracker Barrel”…and that pretty much sums it up. Pete did a great job of handling the talking through the first interview and Nathaniel got camera shy when they asked him questions. His only word was “Sure.” Afterwards, I asked him why he didn’t say any of the things that we had talked about and his answer was “Mom! I got excited, ok?”

As soon as we were done with our part of the show, Peyton started demanding Olive Garden….which we couldn’t find…and we ended up at Applebee’s for lunch. We had a nice meal, Peyton was getting exhausted and mom made a major faux pas…I left the to-go boxes, with her leftovers on the table. By the time I realized they were still there and went back in to get them, they’d already been thrown in the trash. I REALLY didn’t want to get back in that car. I mean, REALLY did not want to have to go back and tell her that her food was gone.

“Where’s my box?”

“It’s gone.”
–Much crying begins

“But why?”

“They threw it away.”

“BUT WHY?”

“Because I forgot it there and they threw it away.”

“WHY!!!!”

“Because they don’t like us! We can get more yellow spaghetti (what she calls fettuccini alfredo) at the store.”

“ok.”

Yes, I passed that buck onto Applebee’s. I’m sorry, Applebee’s, but it had to be done.

We drove aimlessly around St. Pete hoping that she would fall asleep and nap…we were willing to waste the gas if she’d pass out. She did for short periods of time, but eventually we just gave up and headed back to the telethon for our second interview. The kids were all in good form, Peyton was laughing and smiling, waving at the volunteers and employees. We had an interview with Steve Jervis, and it went very well. I spoke more that time, sharing a story about Peyton and giving my reasoning for why donating is so important. Pete says it came out coherent and I didn’t appear to be confused or delirious….mission accomplished. There's more I want to post about the day, but right now I'm too tired.

We were invited to stay for the finale, but Peyton couldn’t take one more minute of people smiling and having to act like she wanted to be there. So we jetted out of there. We had to say our goodbyes in the parking lot, there was lots of hugging and kissing, promising to call and swearing to love forever….and that was just getting Pete into the car! But the kids did well with the actual send-off, and then about 5 minutes later I got the sobbing phone call from Rachael. “I mmmiiiiiiissss you!” I didn’t even bother to explain that we’d only been apart a few minutes, we spend more time away from each other when I take a shower…she missed me! Awwwww. Pete and I talked her down from her mild hysteria and got her calmed down.

Peyton is now curled up in Adelaine’s bed, Adelaine isn’t with her…she wasn’t having that! She’s stuffed full of alfredo noodles, pot roast and Kix cereal…it makes me a little nauseous to think about that mix, but whatever makes her happy. I hope she sleeps well tonight because we have to leave the house at 6:30 AM because her radiology appointment is at 7 AM. We head to the clinic after for her spinal tap and chemo, and then we get shuffled off to be admitted to the hospital for overnight fluids and observation. Tuesday morning she’ll get her chemo and then we’ll go to her radiation appointment. Radiation at 7 AM, chemo directly following…that’s our schedule for the entire we’re here….I say that, but things are always subject to change. Peyton also has an echocardiogram on Thursday this week, but that’s no biggie.

She and I sat down and talked about going back “to the place with the mask and the machine that takes pictures of her head”. She told me that she didn’t love that mask but I explained that it wouldn’t have to be on as long these next times and as long as she held really still it would be over fast. She was very calm about it and agreed to do her best to hold still. Wow. I’m amazed.

I’m looking forward to some down time while we’re here in St. Pete. Peyton's treatments are scheduled for early morning, so we'll have our afternoons free to do fun stuff…go to the beach…nap…check out St. Pete…nap….eat…nap….it's good to have ambitious plans. I don’t know what the internet situation will be like at the RM house, so posts may be few and far between….I know, I know…what WILL you do with that 20 minutes of your day? I hear Paris Hilton has to head to jail this week, so maybe you can keep up with her instead. Some folks have asked about where to send cards or packages for Peyton this week….hold on to them until we know which RM house we’ll be staying at and then I’ll post the address…or email me at [url=mailto:anissa.mayhew@verizon.net]anissa.mayhew@verizon.net[/url] and I can give you the home address for you to send to and Pete will bring her the goodies.

We truly love you all for your continued support and encouragement! Pray for our littlest angel that the Lord keeps her soothed and comforted through this difficult phase of treatment.

f.r.o.G…fully relying on God
—Anissa

Well, the telethon went well. Anissa and I had been talking amongst each other about what we would say, as well as with the kids, on how to act. Lemme tell ya, the best laid plans of mice and men tend to go out the window when everyone's looking at you and the camera's on, and they shove a microphone in your face. But all in all, it went well. I recorded it and will see about getting it up on youtube once I get some time.

One of the things that I had planned on saying was something along the lines of, "God has been there with us throughout our ordeal, and right there behind Him has been All Children's." It didn't come out that way, but those of our readers that are from All Children's, we hope you know how much we appreciate everything you do for us. You're an amazing group of people that are helping to get our family through a rough spot.

Some of you may be wondering why Anissa isn't posting. Well, that's because she and Peyton are down in St. Pete getting ready for radiation tomorrow. I haven't spoken to them since we left the telethon. We're all extremely worried about this stage of the treatment. We've known it was coming. Our fears are huge. What side effects will she suffer from? How badly will it affect her cognitive skills? Will it wipe out all the cancer cells in her brain? Will it cause other cancers to grow? I think initially, my biggest concern is the fact that because they bumped the schedule, I won't be able to see them until day 3 of radiation. This is the treatment that essentially terrorizes Peyton for 5-10 minutes. She's held immobile, and isn't able to see Anissa. Anissa will be able to talk to her through a microphone. I really wanted to be there to help get my girls through the first couple of treatments, and it's just driving me nuts that I won't be able to. Please pray for God to be with Peyton as she's going to be scared and immobile. Also, please pray for Anissa to have the strength and to know what to say and do for Peyton when the treatment is all over. I'm reminded of Daniel in the lion's den for some reason. But I don't think Daniel's mom had to watch them actually seal the lion's den.

On a slightly more positive note, "Da Mom's" (and you know who you are!) have arranged to help out while I work the next few days and are taking Nathaniel and Rachael on sleep overs. Rachael has been begging for a sleepover and finally is getting a chance. Sometimes it's rough on a 6 year old to watch your older brother get to do some things that you can't. So, I'm glad she's finally getting that opportunity. Nathaniel was an awesome big brother on the ride home tonight. Rachael can tend to have a bit of seperation anxiety, and he stepped up and gave me a glimpse of the incredible man he's going to become by helping get Rachael calmed down. Of course I think that's offsetting the fact that when asked if people should donate to All Children's today, he replied with a hearty, "I dunno." Ah kids. For what it's worth, the older kids zonked out immediately when their heads hit the pillow. Which pillow you might ask? My pillows. The one thing I was kinda looking forward to with the end of steroids was getting back into my own bed. It's been a couple of weeks and I'm just so sick of our couch. It's comfy enough, but it's just not a bed. Now, I've got a 9 year old octopus and a 6 year old steam roller to contend with in my own bed tonight. I figure it's a slight step up if anything.

Ok, on that note, I'm beat and heading to bed. I'll post more info as it comes to me. Theoretically, Anissa should be continuing with her posts shortly.

Peter

The ACH telethon has started and will be on until 6:00 PM tomorrow on Channel 8 locally. If you'd like to see what's happening with it and watch Peyton's segment at 11:30 and 5 tomorrow, [url=http://promos.tbo.com/telethon_2007/index.htm]then click here[/url] and you can watch via live streaming video!

f.r.o.G…fully relying on God
—Anissa