I wish I could say that the Mac gods were kind and benevolent, but they are a cruel, teasing master! After calling to be sure my computer was ready, we went to the mall in downtown Tama…only to find that they were mistaken, totally and utterly mistaken…it was NOT ready! Why? Why toy with my emotions like that?

I got Cinnabons instead. Because I am all about the comfort food. I get to post this one from Peter’s computer.

It has been an incredibly long week and there is much to update about. Pete did a great job of keeping the posts up to date, he doesn’t do it much anymore, but when he does he smacks that ball out of the park!

Wednesday my computer hit the skids. On a normal day that would be distressing, especially to someone who is as internet-dependent as I am. I have websites to check on, email to receive and holy cow! what if Lindsay Lohan does something really stupid and I can’t receive the up to the minute blow by blow of her actions.

But on this day, of all days, it was a tremendous stress. Whenever a friend heads to the hospital, there are always calls of “what can I do to help?” It’s hit or miss on whether is there anything that can be done. But we are always looking out for each other to see what we can do to lighten the load. We got tons of help and wonderful visitors to make our miserable stay at the hospital better…plus, we had Zack and I want to stress how vital his family’s presence was to making the long week bearable. It’s just an understanding of how heavy the load gets and a desire to try and help in carrying it.

But then something devastating happens that there is nothing that I can do. There is no food to be brought or toy to bring a smile, there is no right thing to say or distraction to be had. It is an awful feeling of helplessness to know that a friend has lost a child, there is no comfort that we can offer, only prayers and love.

Then I was so happy when the Keslers asked me to make a video of photos of Sierra. I was just glad to have something to do, to be able to give something to the process, I guess. Mary Lynn, Sierra’s mom, and Katie, Angelo’s mom, came over Wednesday morning so we could go through photos and get started on the video that would play at Sierra’s service.

My computer goes kaput. Now, I hope you can see why I would start crying at the Apple store on Thursday when the tech tells me “we can’t fix it now, it’ll be at least 24 hours”. This poor guy had to stand there while I fell apart, telling him that I had to make a movie for a child’s funeral. I needed to do this, to do anything to help with this day. Good grief, I have nothing else, this is the least…and I can’t do it.

I think the stress of Peyton being in the hospital and two children passing just all got wrapped up in that moment, and I LOST it!

Fortunately, Cindy from the CCC loaned me her Mac laptop so that I could get the video completed in time. It took me forever because I had to keep walking away from the computer to just collect my thoughts and recompose. It was awful and beautiful and so so gutwrenching to look at her beautiful face, the pictures of her so happy with her family and know that these memories are all they are going to have of her now.

Friday was Sierra’s service. It was amazing to see the number of people who came to show this family how loved they are, how much Sierra’s life meant, what an impact they’ve had on the people blessed to know them. It is so hard not to sit in that room and see the grief and just pray and pray that it’s not us, that we don’t have to do this with our child. The day is not about us, it’s not about our struggle, but it pierces the core of my fears.

Another child with cancer dies and all we are left with is the wonderful joy she brought to the world, and the knowledge that our lives here are less with her gone. The words her mother gave me to add to her video were “We will see you soon”. Faith that we will all see her and the many others that have been lost in Heaven is all we have to comfort ourselves with.

We will see you soon, Sierra.

Peter came home on Friday night, partly to be here for Mother’s Day, partly just to see Peyton with his own eyes and see that she’s recovering, partly to be here for me when he knows my heart is hurting so much. We are both just exhausted. He’s been working and this is the third weekend in a row he’s driven the trip down here. I haven’t slept a complete night in over 2 weeks, between the hospital and the emotional upheaval. We are a tired household, but it’s just awesome to be together.

Today was so good for us. Peter got to spend some lounging time with all three kids while I went out with a couple of friends to look for costumes for a fundraising event for the CCC next weekend. Holly and Natalie and I hit the Goodwill to pick out a theme for our team for the Quest for Hope scavenger hunt and we had a blast. I needed to not think about what the past 2 weeks have been, to laugh and be silly with these friends. For a little while I was able to push that all away and just giggle with the awfulness of some of the dresses we picked, trying to decide on a theme for our outfits….ugly prom dresses, 70’s psychedelic, the Mormon cult with those hideous flowered monstrosities…we ultimately picked some cheetah print outfits. They are perfect, perfectly awful and we are looking forward to our time out.

It’s hard to even get in the mood to go out and try to have fun, but we NEED to. I have to find that joy because right now, it’s hard to hold on to. There is a lot of fear, anxiety and uncertainty. I have to find my happiness in the now. I have to follow my own advice that I can’t let the uncertainty of tomorrow steal my joy of the NOW.

Having some really special time with the kids and enjoying their craziness is so healing for me. I love to hear the things that come out of their mouths, watching the things they do because these children are my purpose and my reason. God blessed me, gifted me with these amazing little people and I am so excited because Mother’s Day is less about them celebrating me as a mother and more about me wrapping my heart around the gift of them making me a mother.

I pray that each of you that are mothers remember the feeling that you’ll have on this day, this appreciation and devoted love. It’s not just one day to say “You’re cool, mom”, but one day to remind you to embrace the responsibility, the joy and gift that God has bestowed upon us. We get the miracle of carrying that baby under our hearts or accepting a child that we didn’t birth, but who holds our heart so completely that we don’t know the difference….we get to be the arms that God uses to wrap our children in comfort when they are hurting or fearful…we get a chance to guide these children, to help grow them into the people they are going to become…for however long the Lord grants us time with them. I am so thankful for each and every moment I get with them, they are my greatest gift. Every day should be Mother’s Day, not for what we get, but for what we have.

Happy Mother’s Day.

f.r.o.G…fully relying on God
--Anissa

Ps. I guess as how this site is supposed to be about Peyton, you’d probably like an update on her as well. Counts on Thursday were lousy, but not as lousy as when we left the hospital on Monday. We head back to the hospital on Tuesday, she is supposed to get her Vincristine and start her steroid pulse. If her counts are still low she’ll get those two meds, but we’ll hold the Methotrexate and 6MP that she takes orally at home until they come up. She is still on her anti-viral and stool softener. Her body is starting to feel better from all the poop issues. She’s not 100% on that one, her tummy is still hurting and her booty is still sore, but she’s evening out and complaining less with each bowel movement. Her pain through this process has been hard to withstand for both of us, but it is getting better every day. Each day also brings more energy and smiles, so there really can’t be too many complaints. She still looks terribly pale to me, her hair is so thin, but I can’t tell you what a relief it is to be home and on the mend.

Oh, and I have to add this little conversation between Rachael and Peyton in the van tonight.

Peyton was listening to her IPod, singing loudly (Beyonce and I'm in the Lord's army, interesting playlist she has there) and having a blast. Rachael was trying hard to not listen when she’s finally had enough.

“Turn the volume down.”

“The volume IS down!”

“The volume in your mouth!”

Ok, so I believe Anissa's mac is still in the shop. I spoke to her earlier in the day while she was at the mall getting the mac fixed, and it wasn't going well. They have a mac store in our mall. It's a very happy place for geeks like us. She grabbed a device to allow her to back up her computer so things like this wouldn't be so catastrophic. I told her she could go a little crazy for mother's day. How's that for romance? She got a usb backup and some video editing software. For our anniversary...our 10th anniversary no less...she got a vaccuum. Feel the love?!? Yeah, we're so practical it's sickening. For Christmas this year, I may just have to surprise her with a frying pan or something.

That's just how we roll.

So, tonight, I'm on the phone with the kiddos as they're on the way home from the CCC. Rachael was the first to call. She always is. I think she's figured out which button calls dad the quickest. Nathaniel was next. Both kids were happy, and having a good time. Then Peyton gets on the phone. It's FINALLY the good ole crazy Peyton. She was giggly, cheery, smart and silly.

Nothing monumental was said in the conversation. I didn't even get a chance to talk to Anissa. The key thing was that all 3 kids were upbeat and having a good time, and that puts my mind at ease. I haven't heard that in about 11 days. The doctors need to take blood to see how things are going. I just need to hear my family in action.

Ah yes, the numbers you've all been waiting for...Thanks Lisa B for reminding me....drum roll please....ANC 300 (she can once again fight her way out of a paper bag!). Hemoglobin 9.2 and platelets jumped to 72000! So her ANC is still a concern, but she's obviously on her way up!

Kicking leukemia's hiney...one cell at a time.

Peter

P.S. An issue popped up at work, yet again, so I don't know exactly if I'll be able to make it down tomorrow as planned. Please pray for an easy resolution on this one so I can sneak down and spend 24 hours as a normal family!

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