Hope4Peyton

My daughter has cancer and I can honestly say this is the best time of my life. I know that will sound weird, and maybe a bit wrong, but in a very real way it is true.

I spent a half an hour today just watching Peyton smile and laugh and we laid on the couch and sang songs and we ate lunch together and I realized that I was given the chance to learn what it means to truly love my family. Not just love them in the wholehearted way a mother loves their child, but in the gut-wrenching, all-consuming way you find you hold every single moment precious when you realize that their mortality is more than an abstract concept. It's real. They could die, or I could die, and do I want to even think that I didn't spend my time with them making every second count?

Oh, it's not possible to enjoy every moment with them, nothing like two kids fighting like caged tigers in the backseat at 8:00 in the morning. It's impossible not to huff a little when you've told them 4 times to brush their teeth and you can still smell their breath from across the room. Finding homework at the bottom of a backpack that should have been turned in 4 days ago, whining about wanting hot dogs instead of green beans, waking me up at 2 AM to see if they can crawl in bed with me…..it wears on a person's patience. But I treasure it, because the moment I think that it could be gone, I say a prayer of thanks for it. It simply means we're together and that's a gift from God. Every day is a gift….treat it as such.

I watched Rachael laughing with her friends at dance class today, all flashing eyes and dimples, the whole group of them giggling and enjoying each other. Nathaniel came up behind me and laid his head on my shoulder and gave me the slightest hug (not too obvious, his friends might see) and whispered that he loved me. Peter and I talked on the porch tonight about how it almost feels like the best days ever these days because we get so much happiness and sweetness out of the littlest things.

There's a lot of things that aren't great and are out of our control. We have plumbing issues, we had to have work done on our truck, the house is a mess, our dog smells bad, Peyton's going to get a lot worse before she gets better AND I broke my toe! But our preacher said a valuable thing, and it didn't mean as much to me then as it does now. Basically he said that we have to learn to be thankful to God in all things, good and bad. I don't know if we necessarily have to learn to be jumping up and down in our seats in joy when bad things happen, but I have figured out that I'm learning to find good in the bad things that happen to me. I plan to make sure I always keep these thoughts and feelings close to my heart because it's probably the most important thing I've learned from this experience.

Thank you to each person who's kindness has touched us and for every prayer that has been said on our behalf. The strengh and love we receive is also a gift and for that we are truly thankful.

Ok…enough mush mush for one night! I'm taking Peyton to her Grandmother's tomorrow and I'm getting my hair done…and for that I will be truuuuuuly thankful! hahahaha

—-Anissa

I think I got to the point where I wasn't praying for the chemo, I was praying for her to make it through the steroid. She did, her last dose was on Friday and let me tell you…..she's already showing a HUUUUUUGE improvement!

I cannot truly express what a joy and relief it is to see her laughing and smiling at Nathaniel and Rachael's silly antics and wanting to participate in conversation and hamming it up for the camera. She'll even talk to strangers and wants to get out of bed and do things. It just feels like we're starting to get our baby back and like we can handle this again.

Since she was getting some serious "dandelion effect" going on, where her hair was just flying out all over the place, I finally shaved it this morning. She let me wrap her in a towel and we put one over her face and I gently and slowly shaved her, Rachael was a little horrified…..but I told her that we were doing it so we could all stop eating Peyton hair and she was cool with that. Kissing the child was sort of like licking a cat these days. She did great during the shave and grinned at herself in the mirror…she also has little handkerchiefs she lets me wrap around her head to go out now that she's getting used to and she's starting to warm up to the hats, but she looks adorable.

I posted pictures of her new hairdo AND her great smiles that have returned in the gallery in the "Happy Peyton" album. Please take a peek and see how much joy she brings and how God is working in her life. How can we not believe that God is comforting her with a smile like hers?

—-Anissa

We went to the doctor Friday with many, many questions, and got several answers. I think the most frightening thing is the number of times I heard the phrase, "we just don't know" from our doctor. This isn't a knock against our staff at all, it's just a simple fact that science in general doesn't necessarily know a whole lot about the disease. They know what treatments have been successful in the past on 90% of the girls tested that were between the ages of 2 and 10, and that's what our protocol is based on. Your heart just goes out to the other 10% and you hope and pray your child isn't part of them. I guess an equivalent feeling would be getting into a 747 with me as a pilot. Yeah I know a lot about flight theory, how most of the systems operate, and have even solo'd before…in a small 2 seater. Heck, 2 of my greatest friends and roommates in college are both pilots. I'm pretty sure I could take off…and fly it from point a to b, but that landing…whoa nelly. C'mon avionics!

Ok, so I'll pass on what info I was given and can remember. Leukemia is a blood disease, affecting the bone marrow. They don't know why, but a cell just goes haywire and starts taking up space within your bone marrow. This doesn't allow for the creation of new white (defense) or red (oxygen) blood cells, or platelettes (bruising/clotting). When we took her in July 13th, her bone marrow was 95% Leukemia (or blastic is the phrase they use). Also, the resting sample they took of her spinal fluid initially was clear. The second one they took had what we were told was trace amounts of leukemia in it, but apparently that can happen as they pull the needle out.

When we left the hospital, they did not have enough cells in the sample to make it a true sample, however, of the cells they did have, they saw no leukemia in her bone marrow or her spinal fluid. Yay God! Then last week, we got some paperwork for our next step in the protocol. Various things were highlighted that didn't jive with the verbal descriptions we were given. And so, we had questions.

Apparently her spinal fluid did have rather large amounts of leukemia in it originally, which put her in a higher risk situation. They don't know yet if it has travelled to her brain. I believe that's what one of friday's tests will show. Another question we had was how she's doing. For all of the chemo she's gotten, they've also taken samples of spinal fluid, and the occasional bone marrow test. Those are showing no leukemia. Yay she's cured! Hold on, not so fast. Those are samples of say 10,000 cells. If they were to expand that view out to 100,000, and look at it more in depth, they would still see the leukemia. The goal of this is to put her in remission, and hopefully keep her there for an extended period of time. The longer she stays in remission, the less likely she is of having a relapse. Again, that's not fact, that's what has worked in 90% of girls between the ages of 2 and 10. They really aren't sure why, they just know that it works in a large percentage of cases. It's a sad view of our society today, but I got the feeling the doctor was choosing her words very carefully to avoid any sort of lawsuit. WHEN we're through with our 2.5 years, we'll be going back and getting tested every month for the first year, then I think annual check ups, for who knows how long.

There are, of course, risks with this treatment plan that we are on. After doing some research, we found out that a lot of the chemotherapies can cause secondary cancers, both blood and tumors. They didn't tell us that. Luckily, Peyton is not on one of the medications that have been known to have this rather nasty side effect. The medication that she's on has been known to cause brain tumors in I think she said 2% of the cases. Other side effects were potential slight IQ drops, potential loss of certain fine motor skills, etc. Once again, you play the percentages and hope it works out favorably.

A very good friend brought up the idea of using some natural supplements and herbs to help out in our situation. So I asked the doctor about using certain vitamins or whatnot to help her body build up its immune system as she's coming off the steroids. The doctor was not at all opposed to that, but she said there were certain herbs that they did know did not work. So that's my research plan this week, reading up on the various vitamins and what they are for. I assured the doctor that I would bring a list to them of what I was thinking and why that was the case, BEFORE giving her anything. I don't want to play Dr. Frankenstein with my daughter, but I do want to help her beat this thing and live.

You know in all this, the Lord is with us. He's with me as I have to have an emotional breakdown on the way to work in the morning. He's with me when an old friend gives a call just to gab. He's with me when my daughter is screaming at the top of her lungs for the world to stop doing this to her. He's with me when my daughter, who always sat on my lap when she was hurt or scared, doesn't even want me in the room with her while she's watching TV. Somewhere I read or heard that the Lord doesn't push you any harder than you can take. It's just that you don't know how much you really CAN take. In this terrible, terrible time for my family, there are still rays of light and hope, sometimes dim at first. Sometimes, they are barely a pinprick in the night sky. Every time I turn around, someone is doing something extremely nice and unexpected for my family. They know as well as we do that these things won't cure my daughter. But they keep doing them, and for that we are extremely thankful. Those little things help keep us going on some of the rougher days.

All of you as readers are helping to see us through this too. When I need a pick me up, I'll browse through the guestbook, or look at the number of web hits we've gotten. Some of the names I know and some I don't know. Some I haven't heard from in a long time, and they all give me a bit of hope on the more difficult days.

Peter

Peyton and I are up early early in the morning. I'm trying to fill her little belly because after this it's jello and fluids only until noon and we haven't done that in weeks! She's having her day 29 bone marrow aspirate and spinal tap today that will hopefully tell us that she's sucessfully been put into remission and we can proceed into the next phase of treatment. This requires her to go under general anesthetic, so pray for her easy recovery from her mild surgery.

Today is also the last day of her steroids, so we're PRAYING that by early next week we'll have our Peyton back. It will be good to have our sweet little girl back, it has been so hard for the whole family to deal with her violent moods and emotional upheavals. With any luck, she'll be able to go back to normal without any residual personality changes from the past few weeks. I know she'll suddenly feel better, so that will be a huge relief.

Please keep Nathaniel and Rachael in your thoughts as they struggle to deal with the changes in our lives. Nathaniel is having a hard time dealing with Rachael…part of which is just a brother and sister thing, but I feel that part of it is also his frustration at the situation and the anxiety and confusion coming out and he takes it out on her. He wants so badly to comfort Peyton and she just does not want him, or anyone, near her at this point and it hurts his feelings and he's not understanding why she's changed so much. I keep reminding him that it's just the medicatition and that it's going to go away soon.

Meanwhile, Rachael is leaning on him for attention and he doesn't want to give it to her. They're fighting a lot and it's frustrating for me, but I'm trying not to lose it with the minimal patience I have left. Rachael is having a terrible time attempting to understand why Peyton gets to do all these things that she never got to do before and gets away with so much more and has such a cushy little life now, as far as a 5 year old is concerned. Peyton gets to lay in bed and watch whatever tv she wants, whenever she wants, she doesn't get a swat for having a nasty attitude and saying mean things, she gets to eat whatever she wants, whenever she asks for it!

I tried to explain to Rachael what was happening with Peyton again, and put it in perspective that now Rachael gets to do a LOT of things that Peyton can't enjoy anyomre. She gets to go to school, she gets to spend time with her best friends and play and be outside and have fun and feel good all the time. I tried to make her understand that Peyton can't do these things anymore, and she doesn't feel good anymore and that watching tv in bed and eating are the only things she really feels good about right now, it's all she feels like doing. Shes seemed to get it at the time, but I know it's going to be a long road of understanding. She and I prayed for her to be patient with her sister, to have a better attitude and to thank God for having a family like ours. She felt better after some alone time with Daddy at bedtime as well.

Peter and I are going to shoot for an available evening some time to go and spend some time together, we'll see how that works out. Maybe with Peyton's steroids easing up on her moods, she'll be more agreeable to staying with others so we can have a moment together. Peter works a lot of hours and I know he's feeling the strain of working and then trying to come home and pick me up off the floor. Often times, after a day of dealing with the Human Whirlwind, I am just exhausted emotionally and physically and have given what little I have left to Nathaniel and Rachael. He expressed tonight how important it is for us to have time together, and he is so right, so I'm going to try to arrange for us to at least get a dinner together.

On a happy note, since school has started, I've been able to meet with friends for a meal, catch up and have some quality time. My dear dear friend Amanda came over from Daytona and brought love and sunshine and her sweet baby boy with her. They spent a couple of afternoons with us and really were able to cheer Peyton up. She responded to Amanda in a way she hasn't responded to anyone since she got sick, able to laugh and talk to her…..it was fantastic to see! Amanda brough her guitar and sang to her and brought candy and sweets, maybe it was her Willy Wonka approach that spoke to my baby's heart! hahahahaha Thank you, Amanda, for continuing to be a wonderful friend and source of love in my life and that of my family.

My amazing mother in law has come over every night this week and brought dinner, helped with the kids, helped me try to get my house under control….she's awesome and I am so thankful every day for her support and loving spirit. She was a support last year through my stroke and I don't know what we would have done without her. This year she's jumped in whenever and wherever we've needed her and we are so blessed to have such an amazing woman in our lives.

We have continued to have a wondeful response from friends and family, offering love and encouragement. Thank you!!!! Let me just tell you, it doesn't get old, every day it helps us get through the next day and it warms our hearts to know about the prayers being said for our family. For those that have chosen to donate to Peyton's fund…thank you thank you thank you, if you haven't gotten a thank you card, you will! Just give old "non-Martha Stewart" here a chance to get caught up. We are humbled by your generosity and thank you for your giving spirit.

I must go get some sleep now, I have a long day ahead. I will post later updating how her treatment went, and when we have results, I will definitely let you all know those.

—-Anissa

A quick announcement that Dairy Queen is having a promotion on Thursday the 10th. Proceeds from blizzard sales from that day will go to the Children's Miracle Network…here locally, that will go to the All the Children's Hospital, a place near and dear to our heart. If you have the time, please go out and support the CMN, they do wonderful work to make sure families like ours get the care that they need, even if they can't afford it! This is a nationwide event, so go to your Dairy Queen wherever you are and enjoy some ice cream for a good cause…these calories DO NOT count!

—-Anissa