Hope4Peyton

Wow, I got really backed up. I had a list of names that I needed to write thank-you cards to, a good 75% of the clothing my family owns was clean but in hampers, Nathaniel’s birthday is just around the corner and I haven’t planned any kind of birthday festivities….and that’s just the tip of the iceberg.

So today I spent, literally, hours folding clothes (primarily because Peyton wanted to help and if you’ve ever had a 3 year old help you fold clothes then you understand…..if you haven’t, it’s sort of like trying to put pantyhose on an octopus….a total pointless waste of time, but realllly amusing!) and trying to get caught up with life. I get a call from the school at 4:30….it was life calling to taunt that it had gotten a huge head start on me again. Nathaniel made full face contact with a basketball hoop pole and chipped a permanent tooth. It went something like this:

“Oh wow, you really did a job on that tooth, didn’t you? Does it hurt?”

“No, not much anymore.”

“Did it hurt really bad when you hit it?”

Silence….roll of eyes…..”Mom, have you ever smacked a tooth on a metal pole?”

“Right.”

He’s fine, I have to find out if our dentist’s office can get him in sometime in the near future….say, before prom and graduation. It’s ridiculous how long it takes to get in there, but now we have to make it a priority with old snaggle-tooth waiting.

The end of Peyton’s week went chemo on Wednesday, visits to see our friend Kaylie AND to the circus on Thursday and then chemo on Friday. Let me just tell you what a fantastic visit we had with Kaylie and her family at St. Joseph’s hospital. Kaylie actually let me hold her and play with her, Peyton was in a fantastic mood and was just cracking everyone up and Tisha and Patty (Kaylie’s mom and grandma) are starting to lose that slightly glazed look. I could see that they’re getting to that point where it’s starting to become a routine, and not so much of a constant shock. Plus Kaylie is doing so well now, no more bad reactions to chemo, she’s chubbed up in a big way from finishing a round of steroids and it was just wonderful to see her so active and interested in us. I think it’s a drag when we have to drive to the clinic several times a week to get Peyton’s treatments, but Kaylie has to be admitted for 3-4 days a week to get hers, so we’ll take our outpatient treatment without complaint.

Wednesday Peyton got double leg shots which she wasn’t too thrilled with, but she recovered from quickly. Kyleen, our child life specialist at the clinic, called Thursday afternoon to ask us if we wanted to take the kids to the Barnum and Baileys circus, there were tickets available for suite seats from the Children’s Cancer Society. It was amazing! I haven’t been to a circus in years and Pete and the kids have never been. They were just in awe the whole time of all the action and the daring deeds and the animals! Peyton was just wild about the dog show and the zebras. Nathaniel was really into the clowns and acrobatics. Rachael thought the trapeze artists were the best and Pete was pretty blown away by the nerve of the tiger trainers. We were able to attend with the Powells, so we got to share this fun night with our good friends and that just made it so much better.

We call them "The 6-pack"

Friday, Peyton got medicine administered via her port, Vincristine and Doxorubicin and she did really well for those. She talked non-stop about the circus and ate chicken noodle soup the whole time we were there. She’s 11 days into her 21 days of steroids and I have to say that God answered our prayers, because she is doing so much better this round of meds than the first time. She’s still eating way more than usual and her cheeks and belly are getting round, but it’s not the obsessive, scary eating she was doing the last time. She’s teary and cries easily, but she’s not being mean or throwing wild temper tantrums. I just pray that it continues to stay steady, we can deal with this easily. If it gets worse, so be it, we’ll cope with that too, but this is nowhere near as bad as we had mentally prepared ourselves for.

She is starting to complain that her mouth hurts. I poked around with a flashlight because mouth sores are common with leukemia treatment and this is the first time she’s said anything about it. I didn’t see anything big, but I am giving her a special leukemic mouth wash for the pain whenever she says anything.

Other than that, we’re doing great! Pete got the lights and tree down and packed away, I did finally finish all that laundry and am ¾ of the way to getting it put away, and the kids are happily back at school….life just has a way of keeping on.

Thank you for the continued support and encouragement, the prayers are Peyton’s best weapon against this cancer and you can’t believe how well she’s fighting.

f.r.o.G….fully rely on God
—Anissa

I have to admit that I’m glad to see 2006 behind us. It’s been one of those years that we’ll always look back on and be able to pinpoint exactly where we were and what we were doing. A friend told me that whatever you’re doing on New Years night is a sign of what’s to come of the year….I was home with Peyton on steroids and Nathaniel sequestered to his room because he has a vicious case of strep throat. If this is a sign of my upcoming year I fear I’m going to need something stronger than Calgon to take me away.

I don’t even know how to express what this year has been about. It seems like the first six months just faded away and the year really started in July, but in retrospect the first half of the year was great. Last year on New Years Eve I made the joking resolution that I wasn’t going to go back to the hospital in 2006 and would stay admission-free. I guess I should have really been more specific. This year’s resolution is that I WON’T win the lottery!

Peyton is starting to feel the effects of her steroids, she’s not sleeping well and her appetite is amping up a bit. She’s still pretty happy but little signs are popping up. Today I caught her with a bottle of fingernail polish and when I took it away she cried like her heart was just broken and apologized and crawled up in my lap and told me she loved me. That’s sweet, but she’d normally get all sassy and throw a fit about not getting her nails painted. So I can tell that she’s already getting way overemotional. Rachael rang the new year in at her Grandma Sharon’s….in an attempt to keep her strep free and as always she had a great time.

Peter and I had planned to hit the town with Angela and Doug Powell, Adelaine’s parents, with the knowledge that one of our girls could end up at the hospital and all plans were off. I hadn’t figured on poor Nathaniel spiking a high fever and he being the one to keep us home, but Peter and I still enjoyed a quiet night together as the kids were sleeping early. Ahhhh, feeling old this year.

It’s pretty bad when shows you don’t even watch can break your heart. I read about a PBS documentary called “A Lion in the House” and it just made my heart ache. The husband/wife documentary team followed 5 families with a child with some form of cancer. Part of me wants to see it, part of me doesn’t, I live it, you know? I do think it’s great that this couple went out there and made this film that touched many people and made a real impact, but it’s hard to know that the reality of the story is that 3 of the 5 children died after filming, and 2 of the 3 that died had leukemia.

When we tell people that Peyton has a 85% chance of being cured, that sounds so positive and we’ll take those odds against what they were just 10 years ago. The whole truth of that statement is that the cure rate is a statistic based on kids that live 5 years past diagnosis. 5 years is cured, if they die after that, if they develop a secondary cancer from the chemo, if they relapse, if they develop tumors from the radiation, if they have heart, liver or kidney damage, they’re still in the 85% cure rate. I have a hard time not getting angry and saying, I don’t want their 85% cure rate, I want 100% cure rate guaranteed to see her well into her 80’s. I can’t imagine a day without her, so I try not to, I just enjoy each day as they come and make memories. Just in case.

We’re heading into 2007 with no big plans, just prayer in our heart and thankfulness for each day that we have together.

Peyton will be heading back to the clinic this week on Wednesday and Friday for more chemo. Wednesday involves a double leg shot of Peg-Asperiginaise, and Friday is Vincristine and Doxorubicin. The older two kids head back to school on Thursday and I think we’re all a little excited about that. It’s been a great vacation, but they’re seriously getting on each other’s nerves and, in turn, on mine. We have had some fun times this break, friends, family and all the holiday hub-bub.

We hope you all had a great New Years Day, and that God brings you much happiness and love in the days to come.

f.r.o.G…fully rely on God
—Anissa

We got to see a special friend of mine, Amanda Benjamin and her sweet little boy Haven. They came for a visit and brought lots of smiles and laughter with them. Again I am so amazed by the support and love I receive from my friends and am monumentally thankful to have them in my life. What a gift each has been.

On a side note, we went to the mall and rode in the little $.50 rides….and Peyton got into the NASA rocket that spins around and this is what I found out:

Not all kids want to be an astronaut when they grow up.

Delayed Intensification started on Thursday and for the most part it went really well. We had to be at the clinic at 8:45 AM, Nathaniel and Rachael both went off to stay with friends for the day because we knew it would be a longer day.

As weird as it sounds, returning to the clinic after a longer break was almost comforting because these people who care for Peyton have become like an extended family. We’ve developed friendships and how can you not come to care for someone who cares so much for your child? They are a wonderful group of caregivers and we are so lucky to have them during Peyton’s treatment. Peyton actually enjoys going to the clinic to see her special friends, even though she knows she’s going to get her “pokeys”.

Thursday, she started off the morning with getting her port accessed. It’s always hard to get her back into the routine after she’s had time away from the clinic, so she wrestles a bit and cries. I have to lay her on the table and lean against her legs so she won’t kick and then hold her shoulders and hands flat so she won’t flail and touch the port area while the needle’s going in. Once it’s in, she calms down instantly, like “oh that wasn’t so bad”, the anticipation of the whole procedure is worse than the actual stick. After she gets all taped up and has her “tubie” on, she’s ready to wait. They pull blood from her once she gets accessed and they send it to be tested immediately to see what her counts are, and once they know that her counts are high enough for treatment they call the pharmacy for her chemo. So, we had a little wait, she was complaining mildly because she was hungry and she’s not allowed to eat or drink anything before she gets a spinal tap.

The spinal tap was pretty smooth, she squirms and wiggles and complains very loudly that “you’re squishing me!!! I can’t breath! You’re squishing me!” Because she has to be in a very precise position and two of us have to practically sit on her to keep her in it long enough for them to get the spinal fluid and to administer the medication. Then she has to lay on her back for half an hour while the meds get where they need to be. As soon as she’s allowed to lay flat I get her snacks going, her new thing is Fig Newtons, and she munched through several packages of them.

She’s talkative and loopy as the sedatives wear off, she’s so funny during that time. She got her dose of Doxorubicin over the course of an hour, she got her Vincristine in about 15 minutes and then we were able to leave. We got home by 1:30 and she laid down for a nap right away. She started her doses of Dexamthasone (the steroid), Zantac (for her stomach), and Lactulose (stool softener) Thursday night and then we add her antibiotic over the weekend.

She goes back in Wednesday and Friday for chemo and we’ll be waiting anxiously to see how she reacts to this new chemo round. Someone asked how long it took for us to see a reaction to the steroids the first time, and I realized that we don’t really know because she was in the hospital for her induction when she started them the first time, and she spent a week on Morphine at the time and it masked some of the side effects. We’ll be watching this pretty closely to know what to expect when she goes through this same cycle again in 4 months.

It was so nice to enjoy the break over the holiday, and now it’s back to the chemo grind. Its hard to take a child who feels so good, looks so good – she’s put on 2 lbs over December all on her own – and who’s blood counts were excellent back so they can give her poison that makes her feel terrible. I just prayed during the drive up to the clinic that we would have the strength to be comforting for her and get through this treatment. She’s been complaining that her stomach hurts and I’m giving her meds to ease any nausea she may develop and her appetite is already waning. It’s excruciating as a parent to watch her decline during these rougher treatments, but we know it’s the only hope for her to have a healthy future.

We’re constant in prayer, that’s our greatest weapon against this cancer.

f.r.o.G…fully relying on God
—-Anissa

ps…I title this artistic piece “Living with Picasso”….otherwise known as “But I couldn’t find any paper this big!” My kids, namely Rachael on this one + markers = permanent fun

I hope everyone had a fantabulous Christmas and remembered exactly who is the reason for the season! Also, once again a big thank you to everyone out there who visits our site. Seeing the number of people that hit our site and follow our story is very encouraging, especially on these extremely tough days.

Today is an all day chemo event. Peyton will be a pin-cushion as she gets chemo administered through her port and spine. To top it off, we'll be starting the steroids up again. There really aren't too many words to describe what it's like to have a very strong-willed 3 year old on steroids. Picture a very short Incredible Hulk…hungry and irate. I think this steroid go around will be roughly the month of January. We didn't know what to expect the last time we were on steroids, so it hit our family fairly hard. This time around we're mentally preparing ourselves for the worst so things can only get better.

Much like you always realize there's going to have to be an end to a vacation, we realized that our "Christmas break" would end like this. So we enjoyed it to the fullest while it was here, and now it's just time to get back to work, beating Leukemia. Peyton has been very lively and full of energy thanks to our little reprieve and as much as she's been eating, I wouldn't be surprised if she grew a few inches up and out! We tend to think that this may just be her body wanting to grow now that it's not getting blasted with chemo.

So, please pray for our family to have strength, both today and through the weeks to come. Pray for Anissa to have patience and courage throughout this ordeal. Pray for Nathaniel and Rachael to have understanding as their sister will be difficult to handle. And mostly pray for Peyton to get healthy.

We're right around the 6 month mark on our treatment plan, only 2 years to go!

Love to you all

Peter

“Who has more presents than me?”

“Oh, that’s right…no one!”

Ahhhh, Christmas. Come and gone, with memories to keep forever and pictures with which to blackmail our children through puberty. Our holiday was wonderful, we had so many moments of laughter and a couple of unplanned tears, it was a day of blessings and love for us.

Christmas Eve, my mom and dad arrived from Daytona Beach to partake of festivities. The kids fell on Grandpa and Grandma like a pack of attention-starved wild dogs, acting like goofy monkeys in an attempt to win the “favorite grandchild” trophy. If each child wasn’t whispered to that they were indeed the favorite grandchild, they were made to feel as though they were. The whole family packed up and attended our church’s evening Christmas service where the music and message were a thing of beauty and clearly defined the truest meaning of Christmas. However, we did have to have a talk with Nathaniel about what Christmas means to us because he wasn’t quite getting it. A gentleman who has been Nathaniel’s camp counselor for the past few years and is very active in the children’s church sat next to us during the service. As the service ended and we were all gathering our kids and belonging he told us “Merry Christmas” and Nathaniel answered “Happy Hanukah”. We tried real hard to make him understand that that’s not an appropriate comeback for holiday wishes for our family….because we’re at a Christian church….and primarily because we’re not Jewish.

We shared a lovely Christmas Eve dinner at Peter’s mother’s place, ate too much of some truly fantastic food and opened sweet special Grandma gifts. We hurried home to get the kids in bed because Peter and I were just slacker enough to have wrapped NOTHING yet. We were still wrapping presents at 12:30. I guess the kids didn’t really notice the difference between the early precise wrapping and the later “just get a stinking name tag on the box” wrapping. Note to self: next year just throw the gifts on the floor and let the kids jump in like mud wrestlers.

At 7 AM the kids started getting us up and we made our way to the living room. They were in awe of the presents lining up around the tree and did the customary lift-and-shake on a few, but were twitching with impatience as the adults got coffee, brushed teeth and made our way to the living room. Besides the parents-to-kids, kid-to-kid, kid-to-parent, grandparent-to-everyone gifts, there were also some added blessings under our tree from a Baylife Church life group that brought special presents for our whole family. Toys and clothes were gifted to the kids and gift cards were given to the whole family. They truly reached out to bring extra love to our home and succeeded.

It’s amazing how generous and giving those around us have been. Besides the parties we’ve been invited to through the Children’s Cancer Center and the American Cancer Society, gifts have shown up from friends, strangers and relatives. We’ve been overwhelmed by the way our family has been embraced and cared for by so many. We have no way to show the depth of our thanks, but we keep saying and we keep meaning it: Thank You!

I had a moment of absolute panic this week, the kind that makes you feel like you’re just going to pass out or throw up or both. In October, Verizon has all its employees enroll in insurance for the upcoming year and I did the online enrollment to keep our same insurance which was the best that they offered and which we would so desperately need over the next few years of treatment. We got our new insurance cards in the mail and my eyeballs almost fell out of my head because they were cards from United Healthcare and we were supposed to get Cigna. Yikes! Bad! Oh NO!!! Anissa looses it! Pete freaks! Fun times! It was very very bad because it would be a significant drop in coverage, huge out of pocket expenses and deductibles to meet, I was just ill. After a very stressful phone call, it was all explained and the situation was put right. God provided a fix and we are now safely insured for the next year. Pfhweeeew!

Peyton is still eating like she’s already started steroids, which is fantastic because it’s the first real appetite she’s had in months. We’re getting mentally ready to hurdle into this next phase of treatment, please pray for all of us as it is a very hairy 8 weeks ahead of us.

Our sweet friend Adelaine Powell has finished the worst part of her treatment and is now starting the maintenance phase of her treatment. She has a tentative projected date of September 18, 2008 for the end of treatment. She will still be immune-suppressed and run the risk of infection, but the ups and down are going to level out a lot at this point. We are so happy to hear this great news and to see a light at the end of her tunnel.

f.r.o.G….fully relying on God
—-Anissa