Hope4Peyton

As if Anissa didn't have enough going on, and apparently in response to her sneaking out to Little Tales sans Peyton, life decided to throw her a big fat curve. Her mac decided to stop working, which means she can't post. Tonight's role of Anissa will be played by a rather large bald man. So, while I've got your undivided attention, I thought I'd take the time to review the following:

1. How to build your own real working r2d2 unit
2. 1001 conspiracy theories on Lost
3. Logarithms and you
4. Was Elvis on the grassy noll?

Ok, but seriously folks, Peyton has clinic tomorrow to get her counts. Her booty is still irritated and she's still not sleeping through the night, but at least they're home. Being Peyton, she's still holding a grudge about missing Little Tales.

These days we just take it one day at a time.

I'm considering heading back down to Tampa again this weekend, possibly 3 in a row for me, but it's so hard to be away while my family is hurting. In the past 2 trips down, I think we've gotten to spend about 8 hours in total together as a family. Plus, I wasn't really that good at being a bachelor before we met. Now that I'm domesticated…let's just say I'm not that strong of a swimmer.

Doing this long distance thing is extremely rough sometimes. I want to be down there to help my family get through these trying times, but the job needs me on site, and we obviously need the insurance/money combo. Thankfully, I was able to get down there during some of the recent tough times.

I would like to share a pretty exciting thing that happened this past trip back up to Alabama. It's a 6+ hour drive down there 7+ hour drive back. You can tell I'm generally in a hurry to get there. I've done it a handful of times now. At first, I'd just crank the radio, drink coffee and drive. Lately, I've been doing it with fruit and without the music. Just doing some retrospective soul searching, and lots and lots of praying. So this past trip back up here was rough on me. Anissa and Peyton weren't yet home from the hospital, and my mom took Nathaniel and Rachael. Nathaniel does his best to be strong. He puts up a good front, but deep down he knows what we all know. We just need to be together as a family. Rachael doesn't put up quite that good of a front. She's a ball of tears. So after about 30-45 minutes of doing my best to get her calmed down, I wound up sneaking out while my mom took the kids down to the hospital. You can imagine I wasn't exactly in the best frame of mind on the way back up.

So I'm headed northbound on I-75. There was one of those picture perfect sunsets off to my left. I started praying and asking the Lord "why the heck am I doing this? I need to be home with my family." Both Anissa and I felt that He wanted us up here. About 5 minutes later, my phone starts buzzing me. An issue popped up at work. So I called one of the guys that works for me to make sure he was dealing with it. After he assured me everything was under control, we gabbed for a bit. I gave him the latest news on Peyton's situation. He told me that he's been praying for us and then he drops the bombshell on me.

He said, "I got saved last night!"

This is a guy who's had some problems in the past (who hasn't?). He's a great guy. He really is and he's very good at what he does for a living. He's recently had some life events happen to him, and in trying to help him through those tough times, I had an opportunity to witness to him and another co-worker. Yet another co-worker (who also happens to be a pastor) told me the other day that the Bible says something along the lines of "man can experience happiness, but joy is put there by the Lord." Getting the opportunity, one on two to witness to those 2 guys how the Lord has His hands around me and my family throughout all this gave me such an amount of joy as I simply cannot explain.

Sierra Kessler's daddy, Danny, tells a great story about how cancer dads are like oxen. I forget the details, but it's something like this, "An ox on its own can pull 2000 pounds. Two oxen together can pull 10 times that amount. We cancer dads are often the big silent guy standing in the corner on our own because that's what guys do. But when we stand together, shoulder to shoulder, we are 10 times as strong." My translation leaves a bit to be desired, but I think the visual is close enough. That story really touched me. Ever since I heard him tell that story, I've done my best to be like that with everyone, not just cancer dads. In my co-worker, I saw a father who was in trouble, and I reached out to him. All of you who read our site are doing the same for us. We've got that counter over on the side and sometimes it's up over 8000 individual hits a day (trust me, I retrofitted the software)! You all are standing with us, side by side, shoulder to shoulder to help get us through.

I'm 36 years old. I accepted Christ as my savior many years ago. My father was a Baptist minister for many years. I was brought up to be a Christian. I've made mistakes in my past and rebelled, thinking I knew what was better for me. Up until the past 4 or 5 years, I was that "closted Christian". I believed in Christ. I went through most of the motions of being a Christian. But, outside of family, I'd never bring it up in conversation. On Sunday, everything was a picture postcard of Christianity. Monday through Saturday though, was a different story. I'd hear the sermon, and it'd tug on my heart until Monday morning rolled around. These days, I'm actually doing my best to live it Sunday through Saturday.

Apparently I had a mini-sermon in me and didn't even realize it! Ok folks, I guess that's all tonight from your friendly neighborhood spider-man. Trust me, I'm as addicted to my wife's postings as you all are. She'll get her mac fixed in the next day or two and will be right back to her normally funny, sometimes twisted, always entertaining, posting self.

Peter

I am a cheater!

I pre-planned my deception, I made my lame excuses and scurried out of the house full of guilt. All the way to my destination I convinced myself I could hide it, there would be no evidence and no one would ever tell on me. I could get away with this!

All for a bagel and coffee at Little Tales. Yes, I left my house-bound, poop-filled, neutropenic child at home with her Grandma so that I could get away for a few hours. It was so needed though, I have spent every waking and sleeping moment for the past 9 days at her side and I needed this time! But the whole time I was there I was thinking of how royally ticked off Peyton would be to know I went to Little Tales without her, I can only imagine the holy rage she would throw.

But so far I’ve gotten away with it.

“Where have you been?”

“I had to run an errand.” LIAR! Your mother is a liar!

“What day is it?”

“Ummm, it’s Tuesday.” It was as if she could smell the Center on my skin and was just trying to put the pieces together.

“Where am I going today?”

“Nowhere, you still haven’t pooed yet, so you can’t go anywhere.”

“Oh, I thought today was Little Tales.”

“It’s over, baby.” <—Not a lie!

“Maybe next time?”

Ok, I am just drowning in my guilt at this point. She can’t go, she’s not safe against anything and she’s not safe for the other kids while she still has sores in her mouth. I totally went to my kid’s playgroup without my kid! I am a bad mommy.

In the hospital we have a twin bed that has some funky electronic thing that adjusts for movement. That means, every time you move, the bed shifts…it’s just weird. At night, we both sleep in the twin bed, she won’t let me sleep in the chair and I’m fine with that because as uncomfortable as a shared twin bed is, it’s nothing compared to the chair-bed. We’ve been glued to each other for 7 days! I get home and am looking forward to sleeping in my comfy, pillow top, king size bed…getting all sprawled out, no beeping machines, no hourly vitals, no one coming in to ask “Do you need anything?” at 4 AM….SERIOUSLY! All I need is for you to stop coming in and waking me up. Anticipating that sweet night’s sleep. I wake up all night long with Peyton rolled over and pressed up against me like we’re Siamese twins or something. I would roll her back ontp Pete’s side of the bed, then an hour later she had inched her way back over. I think tonight I’m going to set up a roadblock of pillows to keep her on one side of the bed.

Peyton slept most of yesterday afternoon, she went to bed right after returning home from school drop off this morning and is still laying here in bed with me as I type this post. She is so tired, but mostly her tummy hurts because we’re waiting on that poop to happen. I can’t believe that it’s been 6 days since she’s had any action. I don’t know what the next step in that department is, but we’re getting nowhere. I’m hoping that now that she’s off the morphine and we’re home we’ll finally get some movement happening. We did large doses of Magnesium Citrate and Miralax and Lactulose in the hospital, and we are still doing double doses of Lactulose at home…she is eventually going to blow like Mt. Vesuvius. Oh, that’s a pretty thought now isn’t it? I really can’t wait, I know she’s suffering and in pain from it.

Her mouth sores continue to heal, still a little red and swollen, but all obvious sores are gone! Her cough is pretty much gone, but she wasn’t coughing all that bad in the hospital when she showed pneumonia on the x-ray. One thing I miss about the hospital is the daily counts, so I have no idea if they’re up or down. Her hemoglobin was 8.4 when we left yesterday and she’s done nothing but sleep and lay around since we got home, so I wouldn’t be shocked at all if she needs some blood when we go back to clinic on Thursday.

I did talk to the kids last night about Sierra passing. It was hard, but after having been through this several times now, they asked the questions about her family, we talked about why she was so sick and what happened to her body and that she is in Heaven now. I told them that we have to be thankful for our friends who go to Heaven before us, even though we’re sad they’re not here and we miss them, they are the lucky ones who get to be with Jesus and get to be healthy and perfect. Nathaniel asked if Sierra would still have Down’s Syndrome in Heaven, if that would change if she was “perfect”. WOW, I so did not know how to answer that. But Rachael, in her infinite wisdom, said, “Just because she had Down’s Syndrome doesn’t mean she isn’t perfect, Nathaniel! How else would Miss Mary Lynn recognize her?” Ok, I like her answer, she is so much smarter than I am.

Another sweet child passed over the weekend. Not one I was close with, I only knew his mother. Katherine shared so much of her son Steven’s journey with me and we talked often. I never got the chance to meet Steven before his relapse a few weeks ago. After the relapse Moffitt sent them home to the east coast because there was nothing more they could do for his testicular cancer. He passed on Sunday, and Katherine told me that she was so happy for her son, that he was gone from his world of pain and cancer he’d been living in for so long.

I pray for all these families who are trying to find that balance, to figure out how to make this life work with such an empty spot in it. I know God provides the peace and strength they need to get through each day. I pray for those of us who see and feel the loss and that we don’t let it steal the joy of now with the uncertainty of the future.

Please keep prayers for those sweet children who are hospital bound and fighting this battle with remarkable strength – Kaylie, Jimmy, Connor, Presley, Brooke, Matt, Justin, and too many more to list by name.

f.r.o.G
–Anissa

***UPDATE

We had a “CODE BROWN”! It was awful and painful and lots of crying was involved, but she finally had that massive BM we’ve been awaiting. I swear never has a poop been so highly anticipated before. I know that some day, when Peyton is old enough to read this story of her life she will be thoroughly horrified to know that I shared her bowel activities with the world. But I am seriously rejoicing that her tummy is finally going to feel better!

Well, after all that convincing that we would be staying at the hospital until counts came up, we were sent home…even though counts went down this morning.

I guess we were not doing anything there that we couldn't do at home, so they decided to boot us out so more critical kids could come in. Her last x-ray looked good and her mouth sores are healing, so we can treat everything else at home.

Her counts are still very low, and her immune system is still bottom of the barrel at 30, so she is on complete lockdown. But at least we are locked down at home!

Thank you all so much for the constant support though this very rough and emotional week, I cannot repeat enough how much strength I pull from the wonderful encouragement of your words.

f.r.o.G…fully relying on God
–Anissa

To say that this weekend has been a rollercoaster emotionally is a massive understatement.

Peyton continues to improve. Her spirits were high today, she got out of bed for a while to enjoy a story from Miss Tina, Zack’s mom. She even indulged in a nice little temper tantrum, which I subdued fairly quickly and then secretly rejoiced because if she has enough strength to get cranky, then she’s definitely doing better. Her lips are almost completely healed, her tongue and throat looking better. The chest x-ray showed that there is still pneumonia, but it hasn’t gotten any worse, and stable is good.

Story time with the Rozmeski family…we were very lucky to have them close to us for a few days, the kids were each stuck in their rooms, but they could hang out by the doors.

This is Peyton’s visiting gear…protective mask to keep her germs in and everyone else’s out, and the Pole of A Thousand Medicines.

Her ANC went up! Only up to 50, but it is a move in the UP direction, so I was very happy about that. Her hemoglobin dropped to 8.2, I wouldn’t be terribly surprised to see that tomorrow it has dropped again and then she gets some blood. Her platelets took another dip to 48, but still above transfusion level…thank God, because I am still flinching each time I think of her hive reaction during the last infusion of platelets. I’m crossing my fingers that Tuesday morning counts will show improvements all around and that it will show that she’s turned the corner. She has asked for some pretty new pajamas, which I will be heading out to Target for, so if she can work up the energy to care that hospital wear is darn ugly, that’s a great sign!

I know that we will still probably be here a few more days at the least. They do want her counts to be moving steadily up and as much as I would love to go home, I want her to be less vulnerable before we leave. As weak as her immune system is right now, I would not want to go home without this virus and pneumonia under complete control. I have seen too many kids leave with trace pneumonia only for it to rear back up and end up back in the hospital anyway.

Peter had to head back to his job today. It was hard on him and very hard on the kids. Deciding to take this job was a tough one for us, it took a lot of long and hard consideration of all the “could be” and “might happens”. We have been very blessed that our hospital stays have been very few and far between since Peyton went into maintenance, and I guess we forgot a bit of that panicky feeling. This is truly the sickest Peyton has ever been through treatment, she’s had fevers, she’s been sick from chemo, but this is our first really bad, trashing her body sort of illness. It was a harsh reminder that even though we’ve flown through the last months with good health and a happy girl, her body has been through a lot to keep cancer at bay and it is still vulnerable.

Today I found out that Peyton will have to stay on the Acyclovir (the anti-viral) medication throughout the rest of her treatment as a preventative measure. I would hate to think that she would have to suffer through more outbreaks of this pain, so I’m fine with it. Today’s doctor explained that this particular Herpes I virus can affect so many parts of the body…the lungs, kidneys, liver…that keeping it under control is very important. I’ve already seen what it does on a superficial skin level, I would be horrified to think what it could do to her organs.

They are still holding all of her chemo, which has apparently given her body some time to recoup. There is still no definite answer on the hair loss…one doctor is pretty sure it’s just a reaction to a lot of chemo over a long period of time and that this might be what we can expect for the duration of treatment…another thinks it could be a reaction to the virus, affecting her body’s ability to metabolize the chemo and therefore allowing it to beat up on her system. Either way, the hair loss is slowing, and I guess to everyone but me, it really isn’t that bad. Because I see her head every day, I’m in love with each and every strand, the terrible thinning, the baldish spots that show through are worse than they seem to everyone else. Most everyone else has said it doesn’t look that bad, I just know how much used to be there and how thin and fluffy it looks now. She’s nowhere near the bald I feared she would be, and because its long enough to cover over the thinned spots, we’ll be going for that “Donald” comb-over until it grows back. I hope that when we restart chemo we don’t suffer more mass hair loss, I don’t know how much she could lose before getting that stringy and limp look again.

Please keep the Kesler family in your prayers. Although they are the ones suffering the greatest from her loss, each child that passes continues to have a profound affect on the families trying to hold onto hope for their own child. It brings every fear and anxiety to the forefront and we are again faced with the stark reality that for all our efforts, it is usually not the cancer that kills a child, it is the side effects from the treatment, the weakening of their bodies that allows other diseases to take over.

Love your family, don’t ever take a moment for granted. I pray God’s love and strength surrounds all of us and that we trust fully in His power. I often expect Peyton to blindly trust me, to take the medicines that taste so bad, to endure the pain of the procedures because I know that it is what has to be in her life. I love her through them and I comfort her before, during and after. I am working hard to blindly trust the Lord that he knows what he’s doing when he requires us to hurt so much, to accept what feels so very wrong and painful. I pray for that love and comfort to come to all of us.

Please give special prayers for Zack Rozmeski, Presley Dickson, Brooke Martin, Jimmy Reichert, Connor Hernandez, Matt Ermish, and all the many many families in this cancer world.

f.r.o.G…fully relying on God
–Anissa

Sierra Kesler went home to the loving and healing arms of the Lord yesterday afternoon.

She’d fought long, hard, with complete acceptance and in that time she’s loved and been loved so deeply, touched hearts and was such a sweetheart that she can never be forgotten.

I can’t even begin to explain how much I am hurting for my friends, for this unfathomable and WRONG loss they have to deal with. I feel like I’m still reeling from the loss of Delaney and Mathew and I have nothing left to even try to deal with Sierra. I feel broken with grief, but I can hardly cry.

I just pray and pray for peace and strength for the Keslers, all those who love them and all of those who are coping with the fear, sadness and anger this disease leaves in it’s wake. God has a plan in this, the purpose hard to see and I sure haven’t figured it out by any means, but I trust in his understanding and grace. I’m so happy for Sierra, she is whole and healthy, cancer gone from her little body and I picture her running to see the friends who are there to greet her in Heaven.

f.r.o.G…fully relying on God
–Anissa