Hope4Peyton

M&M's. In the dark with m&m's with a stranger who talked to me all night long. This is my first memory of the person who would become the only dad I ever knew. My dad spent nights after my adoption from Korea helping me adjust to the time difference, staying up with me during the nights and feeding me chocolate candies. I know he talked to me all night long, he held me on his lap and told me stories I didn't understand because I spoke no English and he spoke no Korean. But we spoke the universal language of m&m's.

As the years passed, my dad gave me sweet memories. Laughter from cooking disasters, lessons from mistakes I made, time spent together in the wood shop pounding nails into blocks, and sowing the seeds of my fondness for sci-fi movies. We have butted heads, he has suffered through my rebellious years, I rolled my eyes through the "you just don't get it years"…..thankfully, we both made it through alive. All these years later, I have this wonderful dad, I have this fantastic grandfather for my kids, and I will always be thankful to him for being the kind of father who sat up through the night with an unhappy little girl in one hand and m&m's in the other. I thank God for knowing that this quiet, funny, patient (most of the time), loving man was the father that I needed and gave him to me to call Dad.

I remember the day that Pete became a dad. The day before he became a dad was the most stressful day he'd ever had. We sat on the couch together and had to convince ourselves just to leave the house to go to the hospital and have that baby. So unsure of what the future held, scared of the kind of father he would be, worried about the responsibilities about to be laid in his lap with the birth of this first child. Because we consistently napped through lamaze class, all Pete could remember to tell me during labor was "Be a floppy rag doll!"….I truly considered punching him in the face after about the 200th time he told me that. You be a floppy rag doll, I'm tying to push out a Buick!!! But Nathaniel did finally make his appearance. Peter was a dad. A father.

I will never forget that look on his face. That smile. They say that mothers have a glow. I did not glow. Pete did. He was so enraptured by that little ball of skin and hair and fingers and toes, it was enthralling to watch them fall in love with each other. THAT is love at first sight.

It's always been a joy to watch Pete in his role as a father. Watching him learn to give those first baths, to diaper those little skinny behinds, to hold a bottle and smile when they burp…to see their little fingers wrap around his much bigger ones and just lay there gazing as they cuddle together in bed, synchronized sleeping. I will never forget the day that Nathaniel, who was still nursing, rolled the wrong way in bed one morning and starting rooting around on Pete's chest for breakfast and traumatized him for life….I laughed til I cried. Peter as a father of daughters has been a non stop thrill, his unsurpassed glee when they get down on the floor and play with army guys and his willingness to add Polly Pockets to the mix.

When you're a little girl and you dream of the guy that you will someday marry and the family you will have, I truly thought that I would be married to Kirk Cameron….but this is so much better. I am grateful for Pete and the traits that he has that balance me out and make me complete. We are not without flaws and our bang it out moments, but there is no person that I would chose to walk through this life with than Pete.

So, this morning when breakfast in bed died a slow painful death because we had no eggs, no coffee and less than an ounce of milk….he was cool with it. When his card came with a message "gift to be added in near future"….no big deal. Happy Father's Day, Pete!

Happy Father's Day to all the Dads of the world….the ones who go to work and bring home the paycheck, the ones who stay home and pack lunches, the ones who keep immaculate lawn, the ones who have to attack the grass with a machete, the ones who iron their own clothes, the ones who sniff their clothes to see if they're clean, the ones who do dishes, the ones who buy paper plates, the ones who take their kids to the theatre, the ones who teach their kids the intricacies of football, the ones who sit down with their kids each night at dinner, and the ones who only get to spend the weekends or holidays together….Happy Father's Day.

f.r.o.G…fully relying on God
—Anissa

We are home!!

At radiation this morning, Nathaniel almost got a dose as well. When the techs had Peyton all settled and positioned, we would leave the room, they would signal for the door to close and then once it sealed they would start the radiation beam. Because Mr. Curious was in the house, they set the 500 pound (no exageration!!) door to close and he made a dash around it back into the room! One kid with radiation side effects is enough, I don't need two of them running around! They don't turn the "key" that enables the beam to be turned on until after the door is fully sealed, but STILL! I dragged him out of the room and things proceeded as planned…enough excitement for one day. He just wanted to see what was happening, he thought it was "soooo cool!". After it was all over, Peyton got her certificate of graduation to show that she had completed treatment, got a special present from the techs and then she got to take her mask. I wasn't sure how she would feel about that, but she surprised me by being really happy about having her mask to keep. She showed it off to people around the RMH and to Adelaine and Angela who came to visit us before we took off for home.

It didn't take too long for us to get things cleaned up and put into order so that we could leave this morning. We were all set and out the door by 10:30!! That drive home was so good, I was relieved it was over and glad to see that portion of treatment behind us. The RMH was an experience I'll never forget. The wonderful way they treat the families and the opportunity for families to be with or at least near their kids through their hospital stays is so outstanding. We got to meet several fantastic families, but one in particular really touched our hearts.

The Perez family is the one that we tried so hard to talk to but found the language barrier to difficult to manage. We finally had the opportunity to talk to them through a cousin of theirs who comes to help them communicate with the hospital and doctors. Danny, Sylka and Darelys Perez are here from Puerto Rico so that Darelys can receive a stem cell transplant. They have been here for weeks already and are looking at another six months at the RMH house while Darelys receives treatment and recovers. Darelys has T-cell leukemia and relapsed just months from the end of treatment in her brain, causing her to have stroke-like symptoms. She is 5 years old and, much like Peyton, usually has a smile on her face and a twinkle in her eye. She and her parents are here, separated from their other children, a 10 year old and a 7 month old left back in Puerto Rico with no idea of when they'll be together again. My heart hurts for the pain of their separation, the anxiety and worry they have for their daughter who has been given only a 30% chance of this procedure being successful and for the added frustration of being so isolated by the lack of communication they have with those around them that would be supportive but can't. Please keep the Perez family in you prayers, we are hoping that some of the support resources in our area will be able to reach out to them and provide some help for this family.

After we got home today life went on as usual. I walked in the door and it felt like all the energy and stamina that had kept me running efficiently over the past few weeks just drained out of me. My only thought was to curl up in my own bed for a few hours of napping time which Pete wonderfully provided me. Peyton soon crawled in bed with me and we napped for several hours and it was WONDERFUL! Once we got up we had a pretty full evening ahead of us. Nathaniel was invited out with his friend Ryan for some fun time, and I dropped Rachael off for play time with friend Jesse and Lily so that I could go to a special meeting with Peyton.

A group of moms and daughters are forming a club called Bloom….they have a very special purpose in coming together. These moms are developing this group as a way to teach their daughters about serving others, to teach them compassion and how to reach out to those in need and use the gifts and talents the Lord has provided to help others. They are planning to chose service projects once a month and get the girls involved in planning and taking action…how awesome is that!!! They chose to help us with the Peyton-Palooza yard sale as their first service project. They are going to be baking for the bake sale and have contributed to the raffle items, and tonight we got the girls involved with making signs that will be posted up at the yard sale and for advertisement. It was so much fun for Peyton and me to get down on the floor and make posters with these friends, they weren't perfect or professional, but they are made with love and enthusiasm and the heart it takes to make a fundraiser like this work. These signs are filled with more than just paint and color, but the promise of a future of caring and compassionate young women being raised to be involved and be active. These are flat-out the most beautiful signs I've ever seen.

Peter is off tonight with the dads from the Children's Cancer Center for a men's night out. One of the board members of the CCC opened up his house for a guy's night that included food, foozeball, and a poker night with a professional poker dealer and tables coming in for them. It sounds like a lot of fun and I know it was something that Pete really needed. After two weeks of being home with the older two kids full time, he needed a break as well. Trust me, I know how much work that is, and he's done a fantastic job of keeping the home fires burning….and not burning down the house.

I am still exhausted and looking forward to my first night in my own bed….however, Peyton and Rachael are hogging it completely right at this moment. I have no problems booting them out of it though because that's the kind of loving and caring mom I am.

We have a full weekend getting ready to ship Nathaniel and Rachael off to camp. We have some heavy duty scrambling to get ready for Father's Day on Sunday….I have to apologize now for my dad and for Pete's dad…I just didn't have the organization or time to get cards bought and mailed in time for them to have for Father's Day…and my dad's birthday coincides with Father's Day….so double demerit whammy for me! Love you, Dad! Am I still your favorite?

As far as Peyton's treatment goes, we head back to our Tampa clinic….YEAHHHH!!!….on Monday for chemo….that Yeah was for the Tampa clinic, not for the chemo….we missed OUR people a lot. We'll probably be there again later in the week for counts depending on what they do during this weekend. She has these next two weeks and then she officially goes into maintenance…this is considered the Holy Grail of leukemia treatment….it may take it some time to even out but things are supposed to get easier through this part…it had better, we have 2 years of it!

The basics of maintenance are that we will do 12 week cycles of chemo…two week clinic visits for chemo….oral chemo at home…oral antibiotics at home…steroids for 5 days once every 12 weeks….clinic visits depending on how stable her counts are….and hospital stays only if she gets fevers. Her counts will still vary because although it's less chemo, it's still chemo and her body will react negatively. It had still been a thought that preschool wasn't completely out of the question for her, but until I know what she's going to with maintenance I'm not even going to think about it. Maybe after a solid 6 months of positive progress then we'll consider it around Christmas time (IF she's decided to fully potty train), but it's all up in the air and subject to change.

I am just so glad that this radiation and Delayed Intensification 2 is over…almost….that I don't care if she doesn't go to school until kindergarten. As they told us, we'll be watching for a build up of side effects over the next 2-4 weeks….she looks great and is so happy to be home. To everyone who saw her tonight, it was hard to believe that she was getting radiation to her brain just hours prior. She was laughing and playing and enjoying being with friends again. I just want her to be happy, to have as much happiness in her life as she can cram….she goes through so much and still manages to give us so much joy. I am constantly blessed to be her mom and I am glad that I am here to walk this path with her. She has provided me with such a growing experience and shown me how to be joyful and at peace with all that Lord gives us to handle….she is a wonderful teacher and I feel like I've become a better person for all that we've gone through.

f.r.o.G…fully relying on God
–Anissa

I guess when you're as obsessive as I am about posting, people get a little antsy when a couple of days go by with no new news…I mean, I'm one of those people who can always find something to post about.

Yesterday, after consulting with Dr. Cotman, it was decided to go ahead with the rest of the radiation treatments. Frankly, I was relieved because I want to get it done and over with, but if they'd felt the need to hold them I want what's best for Peyton, not what's most convenient for me. Our clinic visit just confirmed that Peyton's counts were steadily sinking…her ANC still non-existant, her hemoglobin at 6 and her platelet count at 30K…so we went ahead with the red blood cells and it was good to watch color come back into her cheeks and see her little lips turn rosy again. Peter and Rachael showed up in the evening and we went to Peyton's other favorite restaurant, Olive Garden, where she ate a wonderful amount of black olives and fetuccini alfredo! It is startling how quickly she goes from eating everything but the glaze on the plate to hardly being able to stomach anything. She's still got little round cheeks, but she's starting to slim down little by little. All her fuzzy dark hairs are gone, she was the strangest collection of random blond hairs on the top of her head, so light and sparse that you can just barely see them.

Peter and Rachael got to accompany us to radiation treatment this morning. That was an adventure and Rachael was REALLY impressed….she kept asking the techs "Is she scared in there?"….Rachael talked to her through the microphone…..and she offered to stay in the room with Peyton and hold her hand which I thought that was so sweet of her. Pete and Rachael also got to take a trip to the clinic and check out the fun and adventures we have there. Because I had a doctor appointment in Brandon, I left Peyton with Pete to get an infusion of platelets and hit the road with Rachael back home. Although Peyton's platelet count was still borderline we opted to go ahead with the infusion to make tomorrow a nice easy day. Rachael ended up going to play with our friends the Kennedys and I brought Nathaniel back with me to spend the night. Pete headed home to get Rachael and Nathaniel is staying with Mom and Peyton so he can check out the radiation process tomorrow. He's going to think it's pretty cool, and I wanted him to understand what it was that happened to Peyton. I know it really hit home with Rachael today when she saw Peyton strapped to the table with her face under that mask. Her eyes were about to fall out of her face. It helps them stay compassionate about all that Peyton goes through if they get the chance to actually see what's going on.

Peyton had a pretty good day with Dad. They finished up at the clinic and she didn't get sick at all, thanks to the pre-medicating her and they took a nice long nap together….can I just say JEALOUS!! Pete told me how glad he was that he got this chance to be at the clinic and be her chemo parent for the day….I don't think he's had the chance to do it yet, and it's good for her to know that she can count on him to be there for her too.

Because Peyton got the red blood yesterday and got her platelets today, she was able to be de-accessed today and doesn't have to head into the clinic at all tomorrow. She does radiation and then we get to clean out our room and head out of St. Pete!!!! whooooo hoooooooo!! I never thought Brandon would look so good. I can't wait to be back in my house, with my stuff and my whole family together again. We've been warned that the radiation continues to be active in her system for weeks after the treatments, so we can expect the side effects to continue to build up…..low counts, lethargy, nausea….but at least the mask will be over with. We get to take it home with us as a souvenir….I would like to keep it for her to have a memory of her time, but I'm also open to letting her get crazy with a baseball bat and chain saw on it if she feels the need. We go back to our normal clinic on Monday morning, but I'm looking forward to a nice long weekend at home.

Peyton still hasn't had the sinus CT scheduled due to insurance red tape, but the doc listened to her cough again today and wasn't concerned. As long as her lungs stay clear and she doesn't develop a fever, she's good and it's probably just viral.

Nathaniel and Rachael have lots of prepping to do to get ready to leave for camp on Monday. They both head off for 5 days of fun and sun at Bible Camp through our church. Nathaniel has gone the past two years and LOVED it…and this will Rachael's first time….her first time being away from Mom and Dad for this long…especially with people she's doesn't know that well. It might be out of her comfort zone, but I've already had a long talk about his duties as her brother and comforter. I've also threatened to walk him to class every day next year in my pajamas and slippers if a report comes home that he wasn't loving and caring every time he sees her and that includes hugging her any time she needs it. He agreed readily. I guess it's less humiliating to hug your little sister at camp than have mom show up and embarrass you at school….tough call, but he's a smart kid.

The great thing about having kids is that God has given you these wonderful little people to love, raise, educate….and mess with! When Peter, Rachael, Peyton and I were eating breakfast at the hospital cafeteria the girls were putting change into the fun little machine that collects change all year for the Miracle Children's Network and All Children's Hospital. The money goes in, the coins spin round and round and then they come back asking for more. I gave them all my pennies…and of course they came back for more…I gave them each some nickels and hoped the novelty would wear off before I had to hand over their college tuition. Rachael was checking out the faces on the nickel and then the building that's printed on the back…it's Monticello…which, because Pete and I both know the answer to "Are you as smart as a 5th grader" is NO, we came to an agreement that Monticello is the home of Thomas Jefferson for Rachael's sake. Then she flipped the nickel over and asked "Is that George Jefferson?" We told her it was….and then we laughed ourselves silly singing "Moving On Up". I can't wait until she gets in school and realizes that Sherman Hensley was never a president! I love having kids.

We are so thankful to the Lord for two weeks that went by quickly and with relatively few problems. Peyton handled it all like a champ, and I just know that God's comfort and strength were with each her every day. We have been blessed with packages of love arriving each day and those have lit up her face with smiles and excitement. I can't thank all the wonderful generous people who thought of her…Steve B, Lisa M, Karalyn, Holly W, Tisha and Kaylie and Patty, Melissa and Brianna, Heather D. To all of you who sent those extra messages of love and support and encouragement throughout this past two weeks, I cannot thank you enough for your prayers and compassionate hearts in helping us through it all. To the wonderful friends who helped juggle the kids, who dropped off meals and just helped this time be less of a hardship….thank you from the bottom of my heart, you have shown what it truly means to be a friend in Christ.

f.r.o.G…fully relying on God
–Anissa

Today Peyton and I went to the hospital gift shop and bought a balloon. Not just any balloon, but a very special balloon that would represent our prayers for a special family we are thankful has become a part of ours. We walked to the sidewalk with our balloon and with a prayer for the Duckworth family who today honored their son Jacob, his courageous battle with cancer, and grieved each day of this year that they've been without him, we let that balloon float to into the sky. I know that Peyton thought it was a terrible waste of a good balloon, but it was a special moment of our day to send that balloon into the heavens in memory of[url=http://www.caringbridge.org/fl/jacob/] Jacob Duckworth[/url].

After radiation, Peyton and I took off for our Lil Tales play date at the [url=http://www.childrenscancercenter.org]Children's Cancer Center[/url]. Pete brought Nathaniel and Rachael and although it had been less than 24 hours that I said goodbye to them at the bowling alley, I was filled with so much happiness at seeing their smiling faces. The kids got some good play time in, made crafts for Dad and ate lots of good junk food. Pete got to come to the mom's morning coffee break and be a part of the grown up time. I think he now understands why I look forward to Tuesday morning every week, it changes from week to week depending on who can make it and who has good news, who has bad….but it's always a wonderful time to share and bond. Pete got to bond with the moms today…..not a lot of guys could handle that, but he did great!

Peyton got to spend some quality time with Cody, Dana and Miss Kay….her absolute favorite people in the world…all the way to the CCC she kept asking me if they would be there. She got to wear a beautiful new dress that Miss Kay got for her and carried around a new purse as well. Thank you, Bertoch family, for the unlimited compassion in your hearts and the love and joy you've given not just this little girl, but to all of us.

Peyton's chemo visit could have gone better, but she handled it well. Her needle came loose from her port and she didn't have to be completely de-accessed, but she did have to have it jogged around a bit to get the needle back where it needed to be. She didn't think a whole lot of that and expressed her dislike most VOCALLY! When her CBC came back, the nurse told me that they wanted to pull more blood and test it again because the numbers were so low the first time….and the second time…and then came back in and let me know that the third time was even lower so they were just going to stick with the highest counts. Ok. In just 24 quick hours her ANC went from 400 to 0….her hemoglobin went from 8 to 6…and her platelets dropped from 60K to 35K…..so she's got her pretty red bracelet that cross and types her blood and got products ordered for tomorrow. We also went back to RMH with strict orders to watch for any symptomatic problems of her being so anemic and her platelets being so low or fever because she has the immune system of a chunk of cardboard. I gave her a nice big dose of Zofran for her nausea before we headed into the clinic today and although she wrestled with a "yuck tummy", she never threw up today. She took a nice long nap and woke up refreshed and happy. Amazing!

This is what 11 months of chemo and radiation can do to you!

Today I got the files of the print project the put together to go with the DVD movie of the "Faces of Pediatric Cancer" video from Lisa Orlando of the [url=http://www.fastercure.org]Pediatric Cancer Foundation[/url]. I would love to post it for you, but it's a pdf and I can't do anything with that. It's AWESOME though!! I was just thrilled to see it and know that more than just having Peyton's picture on that flyer, I got to be a part of a project that's going to raise money towards a cure, raise awareness and represent the tens of thousands of brave kids! That movie was just a fluke, a need in my heart to put my love for these kids in some physical form and God is going to use it to do powerful work! That just goes to show and prove that when you're least looking to make a difference, God can use you in unexpected ways.

Our special prayer requests include:

*The [url=http://www.caringbridge.org/fl/jacob/]Duckworth family[/url], [url=http://www.caringbridge.org/visit/zacharytucker]Tucker family[/url], [url=http://www.paigewirth.org]Wirth family[/url], [url=http://www.caringbridge.org/fl/taylor]Arrington family[/url], Redmond family, Hanson famly, and every family who's lost a loved one, who mourn and grieve and have to find the strength and faith to get through each day.

*Daniel Carlucci and his parents Paul and Amy, he needs our prayers as he struggles to live. His little premature body is fighting hard, but we just ask the Lord to provide a miracle for this little boy.

*[url=http://www.caringbridge.org/fl/sydneysims/index.htm]Sydney Sims[/url] has had her surgery and is having difficulties with her lungs and we pray for continued strength and improvement for her. The surgeon removed a group of lymph nodes and the family is waiting on confirmation on the test results.

*[url=http://www.caringbridge.org/visit/sierrakessler]Sierra Kessler[/url] has been in and out of the hospital the past few weeks with numerous fevers and she just needs lots of prayers for her little body to get the strength to fight these fevers.

*[url=http://www.helphannah.org]Hannah Deal's [/url]family is gone on their second Wish trip, I just pray especially for them as they stock up on moments and memories that will have to last them a lifetime.

*Pray for Peyton tomorrow because with her counts so very low, there may be a problem with administering her next doses of radiation. We are going to meet with Dr. Cotman early in the morning to see is he feels that she is safe to continue with treatment or if he thinks we need to hold it. I don't know what that would mean for her if they do have to hold it, she may have to be here for a make-up treatment next week. We will wait and see. I'm sure it will just break her heart to not wear her mask tomorrow!

f.r.o.G…fully relying on God
–Anissa

A very special friend of mine, Paul Carlucci, had a baby 3 weeks ago. Daniel Carlucci was born at 26 weeks. He's been having trouble the past few days breathing on his own and is in need of your prayers. His website is at Daniel Carlucci.

Peter Mayhew