Hope4Peyton

On the way to the clinic the two older kids were quizzing Peyton about “what hurts” during her treatments. Yes, the needle pokes hurt…no, taking the needles out don’t hurt…no, it doesn’t hurt when the blood comes out….yes, it hurts when the tape comes off. And then Nathaniel said the thing that nearly made me drive off the road laughing.

“Well, at least you don’t have to put tape on your armpit, cause on me that’ll be hairy…that’ll be my MARK OF MANHOOD.” I’m not sure where he picked this up, but it cracked me up so bad I almost cried! Apparently he's never heard of French grooming habits. I’m just picturing him with his arm up to the mirror daily, checking for his first MARK to appear…I don’t know, should we get a cake or something when it does?

This morning at clinic we had a chance to spend a few minutes with our friends Nikki Hawkins and her mom Penny, and brothers Will and Jared. They are a fun crew and although I miss seeing them regularly, its awesome that the reason our visits are less frequent is because she is done with chemo and Peyton is in maintenance. The friendship we’ve built just grows and grows though and that’s truly a gift from God.

Peyton was white as a ghost and I wasn’t surprised in the least when her hemoglobin came back at 6.5…anything around 8 and lower is LOW…she immediately got her red bracelet and appointment for blood on Wednesday. The doctor and nurses watched her walk up and down the hallways and checked out her limp, but don’t appear too terribly concerned at this point. She isn’t experiencing any pain at this point and after checking her joints they don’t feel like it’s a problem with her hips (which I wasn’t aware was a possibility). We’ll just stay aware of the limp, watch for signs of pain, and plan for the physical therapy.

Other than that, her counts were good, her ANC was 1500 so we proceeded with her daily 6MP and her weekly 5 pill dose of Methotrexate today. She doesn’t go back for chemo in the clinic for two weeks! It’s been a long time since we’ve had a two week break from the clinic so we’re looking forward to it! I’m glad she’s getting the blood because that’ll have her all nice and perky for our trip this week!

I finally finished the laundry and pulled out the bags and started packing clothes and the girls were glued to my side, bringing me stuff they felt were essential…like hats they never wear, slippers I haven’t seen since Christmas, Peyton brought me 6 pairs of shoes…that’s my girl! I know those packed bags are going to drive the kids insane!

I had my first glimpse of exactly how expensive our future orthodontist bill will be. Rachael was showing me where her new tooth is coming in and I noticed her second permanent tooth coming in…stuck behind the baby tooth that has no intentions of coming out any time soon. At this rate she’s going to have a double row of teeth much like a shark. My only hope is that we make the definite arrangement for Peyton to marry Cody Bertoch, one of her favorite friends from the Children’s Cancer Center, who plans to be an orthodontist and pray for a family discount.

I should also share that Nathaniel, Rachael and Peyton are showing promising signs of musical ability….not with any instruments, but they proved tonight that they can all play a mean air guitar! It was hysterical and we enjoyed the show as much as they enjoyed performing. Now if Peyton can just grow some hair we can teach her to head bang and they can take their act on the road.

f.r.o.G…fully relying on God
–Anissa

This beautiful little girl is Paige Wirth, she passed away from a Glioblastoma Multiforme at 19 months on Oct 13, 2004. I’ve had the joy and pleasure of getting to know her family over the past year, her mom Holly was a huge help with Peyton-Palooza and they are just a phenomenal family.

Holly and David are hosting their third “Back to School” party for the All Children’s Hospital Tampa Oncology Clinic (where Peyton gets treatment) on August 3rd. They provide school supplies for the kids to pick and choose from and they distribute gift cards for the families. They also have been able to provide a special needs family with backpacks packed full for their kids.

What a blessing it is to have these families who continue to do such tremendous things to reach out to the families still battling every day. This is a way that the Wirths celebrate and remember Paige and honor her memory.

This part is directly from Holly’s email—-

“This year we would like to be able to provide each child with school supplies and a gift card to Target or Wal-mart. If you would be willing to help, please pick up a $10 gift card the next time you are out shopping. Our goal is to have 40 gift cards which would be enough for every child that comes to the party.

Holly Wirth”

f.r.o.G…fully relying on God
–Anissa

We were invited to attend a “Christmas in July” party held by the Fraternal Order of Eagles in Brandon. The FOA hold a Christmas in July and a regular Christmas party in December where they collect toys to donate to the All Children’s Clinic that Peyton goes to.

When we got there tonight we were treated to an awesome home cooked turkey dinner and someone had brought us chocolate covered strawberries as a special dessert. After Nancy, the head nurse at the clinic and a board member of the FOE, got up and explained the purpose of the night….then, Kyleen, the clinic child life specialist got up and talked about what their donations provide…and then I got to get up and just give them a short speech about the special gift they give the kids of our clinic. I talked about how the prizes and gifts the kids receive are such a part of making each clinic trip bearable for the kids, that the prize is something they look forward to after each finger poke, port access, spinal tap…whatever they have to endure. It was just important to let a group who devotes time, money and dedication to making the kids’ experience better know what a difference they make.

The group was thoroughly taken with Peyton, who danced the night away with Rachael and Nathaniel, who smiled and played throughout the party. The members of the FOE all brought toys that were placed on the pool table for Kyleen and Nancy to take to the clinic for the kids. By the end of the night, the toys were piled three feet high all over the table and my kids were wide-eyed at all the goodies. Poor Nathaniel really weighed the benefit of getting a few shots for getting some of those toys…I made sure to let him know that it wasn’t worth it.

Nathaniel, Rachael and Peyton had an absolute blast, there was a DJ and they all danced and shook their groove things (often to songs they’d never heard, this DJ played to a slightly older crowd….Sinatra, Ray Charles, Chuck Berry) but they enjoyed it all!

I just want to send a huge thanks out to the Fraternal Order of Eagles, you gave us a great night and we are so grateful for the wonderful crafts and gifts you provide our kids and for the continued support for the clinic.

Peyton and Kyleen, the greatest Child Life Specialist EVER!

Cake with blue icing….again….

Nancy, our favorite head nurse in the world!

f.r.o.G…fully relying on God
–Anissa

PS….I added some updates to the Events Calendar…check them out!

After Peyton finished Delayed Intensification 2 I was thrilled that her limp was gone, and she was no longer complaining of leg or back pain! Today the kids and I went to walk the mall for something to do in the midst of the rainstorms so that we could get out of the house. While we were there Peyton and Rachael would run ahead of me and that’s when I noticed that her limp was back and it looks worse than it ever did. She got a heavy duty dose of Vincristine on the first day of maintenance on the 11th and I was just surprised to see the limp come back in such a pronounced manner. She’s walking like a little duck and to see her run, it looks like one of her legs is shorter than the other. I’m disappointed to see the limp come back, I’d prayed that since it seemed to improve that we wouldn’t have to do physical therapy, but now that it’s come back with a vengeance, I’ll have to get her into a PT schedule.

She took a hit in the face again, right above her left eyebrow, and it left a NICE bruise. It goes fantastically with the bruise that won’t seem to heal on her cheek. All she needs now is a busted lip and she’ll look like the poster child for the “Am I an abused kid?” public service announcement.

Pete, Nathaniel and I got to go see the Harry Potter movie…not all at the same time, Nathaniel and Pete went to see it while I stayed home with the girls and then I went by myself tonight. For someone who doesn’t have kids, going to a movie alone might sound sad…but for me?….it means on one bugging me for food, whispering for me to explain what just happened and no trips to the bathroom right in the heart of the action. I’ve spent the past few weeks reading through books 1-5 and it was so much fun to watch.

Tomorrow night the family is meeting with Kyleen, our child life specialist at the clinic, and Nancy, the head nurse at the clinic at the Fraternal Order of Eagles in Brandon. The FOE provides a lot of the crafts and supplies that the kids enjoy so much during their clinic trips and we were asked to come and I’m going to be saying a few words of thanks on behalf of the families that they help. It’s an awesome opportunity to say thank you to a group that consistently supports our clinic kids.

I have so much preparing to do over this weekend to start getting ready for our trip to Give Kids the World. I have laundry to do and bags to start packing!! I’m really excited about that. We go to the clinic on Monday to see what her counts look like and if they are even close to being low I’m going to ask for blood so that she’ll feel good while we’re in Orlando. Because she’ll be doing two heavy doses of Methotrexate before we get back to the clinic I want her to be all pumped up and perky.

f.r.o.G…fully relying on God
—Anissa

Between the dog and Peyton, I’m not sure who has the higher dose of steroids. Buffett has to go on them for swelling in her ears because of reoccurring ear infections. The vet looked at me a little strange when he told me that the steroids would make Buffett eat more and drink more, and I asked him if it would make her mean or cranky. I know this vet was thinking “Your dog gets cranky?” But hey, it make Peyton pretty mean and I KNOW she’s tried to bite her brother and sister, what could it do to the dog?

As I was pretty sure would happen, now that the Celebration of Life has happened, I’m getting the hourly question about whether it’s time to leave for Disney or not. One of the things in the gift basket with a video and book of the parks and all the things that you can see and do and the kids have gone through and circled the many things that they have planned. Peyton doesn’t want anything scary, Rachael doesn’t want anything too fast and Nathaniel doesn’t want anything pink or princess related. I think he’s going to be in a special level of torture as I know he will suffer through many princess events because of his sisters…but the hint was dropped that the Bucs start training camp while we’re in Orlando and that possibly there could be a guy outing! Maybe that’ll be enough testosterone to equal out the frilly, pouffy stuff.

Nathaniel and Rachael finished chess camp, Nathaniel’s going all Eddie Fisher on me….he wants more classes, wants to get good enough to be in tournaments….and he’s willing to teach me to play. I’ve already accepted the fact that the kid is way smarter than me, do I need this blow to my fragile self esteem as well? Rachael enjoyed the class, but no big thrill…she’s more into the art classes that she attends. She’s my kid that’s counting down the days til school starts, I don’t know where she gets that from.

Peyton is really worn out these days. She’s still on the egg kick, several times a day I can be found scrambling them so that she can get her fix. In fact, as we drive through Brandon, she now points out restaurants and identifies them as either “They make good eggs!” or “They don’t sell eggs.”….I think that pretty much is her restaurant guide to Brandon. She woke up this morning at 7…then took herself back to bed and went to sleep again….then we hit the road at 10….and she crawled back in bed as soon as we got home and napped again…this is so not like her to want to be in bed. This could definitely be late effects of the radiation, they warned us anywhere between 2 weeks and 6 months. I’m just praying that she feels up to enjoying the trip to Give Kids the World, but if we just laze around the villa and eat ice cream all day, I guess that’s not too bad a trip either.

Peyton made a giant potty leap in the right direction….all day yesterday she went in the potty! Today she spent the whole day going in her pull-up, but one day at a time, right? I think part of it is she can’t be bothered when she’s so tired. She’s got an appointment at the clinic on Monday for counts, which is probably a good thing because she’s looking a little pale right now. Just keep praying this little one through it all, we can’t tell you how thankful we are for all the continued support and encouragement.

f.r.o.G…fully relying on God
—Anissa