Hope4Peyton

It’s an ugly disease. It doesn’t pick and chose it’s victims wisely because it has affected too many people who are loved, cherished, needed and missed. Maybe it seems wrong to think that just because you’re a good person you deserve better than to die slowly from a painful disease, but I do. In truth, I wouldn’t wish cancer on my worst enemy. Instead, it takes children long before they have had a chance at life, adults who have full lives they have to leave behind.

I’ve been to 5 funerals in 5 months. That has to be a record for anyone who’s not in the funeral industry or a preacher. 5 precious lives taken by cancer. It sucks, there’s no more graceful or eloquent way to put it…it just sucks.

Before Peyton’s diagnosis, I’d only been to two funerals. One for the husband of a great aunt that I never even knew, people said he was a mean old man. The other was my much-adored grandmother, my father’s mother. I wasn’t able to attend the funeral of my wonderful maternal grandmother because I was very pregnant with Rachael and no one would let someone deep into her 3^rd trimester fly. So my funeral experience up until this point has been very limited.

5 funerals in 5 months. It’s really not that many, because I know that our friends who staff the Children’s Cancer Center have to been to many that are people I don’t know, they’ve been doing this long before we came along and they’ll do it long after we’re gone. I don’t want to even think how many funerals they’ve had to endure, how many devastated families they’ve tried to comfort

But I haven’t figured out any trick to holding together during the ceremony. How to not concentrate on what’s been lost. In the past months, I’ve cried tears for parents who lost their child….today I cried for children who lost a father. My dear friend Kathy laid her husband to rest today, now taking on the burden of being a single mom to two grieving children. I can’t fathom her pain. Cancer stole her husband. Quickly and shockingly, at 46 and only diagnosed 7 months. Cancer leaves pain in its wake, leaves families shattered and frightened, it destroys any sense of certainty in the future.

Again, it sucks

I feel exhausted tonight. Sometimes I feel like I’m emotionally drowning in the cancer. It’s been suggested that I’m too close to it, I need to stop being so involved in everyone else’s cancer and just concentrate on Peyton’s. Stop taking on everyone else’s issues! That’s a great idea. I think I’ll just tell these friends that I love dearly that I really can’t take anymore of their emotional fallout and I’m just going to hang out in my little comfort zone for a while. I don’t think it would be wrong…it would be self-protecting, it could be my way of coping, DON’T judge me!

Yet, I know that it’s part of the reason we were chosen to be thrown into this battle. Peyton’s strength of heart, my family’s willingness to just throw it all out there, love uncontrollably and see what God has in store. I hurt and it motivates me, I see the pain and it drives me, I see the loss and it inspires me. Apparently I am one of those people that it takes a lot to force to get up and do something because that’s what this life has drawn out of me. This burning need to be involved, to be in the messy parts of other’s people’s lives that no one wants to be a part of. Until I was a cancer parent, I wouldn’t have wanted to be this emotionally involved with other people’s kids. Why would I want your child’s outcome to affect me on that level?

I’m ok with the fact that tonight I’m an emotionally gushy mess. I’m beat and tired. I can’t stop thinking about my friends that are wandering around empty houses listening for a voice that won’t speak or a footstep that never comes. Empty beds. Empty rooms

But full hearts. Full of the memories and love that will sustain them, comfort them and get them through THIS moment, worry about THAT moment when it gets here.

Please take the time to be thankful for the gift of life, the joy of family, the blessing of love. Take the time to pray for those who aren’t so lucky. Don’t take for granted that you’ll have tomorrow, that you’ll have time to do those things, say those things, accomplish those tasks. Do them NOW! If you have extra time and you DO wake up tomorrow, GREAT! Now do more.

f.r.o.G…fully relying on God

–Anissa

My son is a glutton for punishment.  I mean that in the most literal way possible.  If you remember back in May, during the week of million brain farts last week of school, my son lost his flipping mind had a few issues.  After giving him 3 choices of punishment, he carefully considered the long-term effects of each and went with HOMEWORK ALL SUMMER.  I would like to think he was manipulative enough to think about his choice being a punishment to me as well because now I had to produce said homework and grade said homework.  In truth, the reason he chose that particular torture is because the other two included the words “…and no video games”.  Well, what’s the point of living anyway then?  We might as well just toss ourselves off the bridge!

I told him that I’d give him the first week of summer vacation to just relax and enjoy the non-schoolness of it all. I also lacked the motivation to go and hunt down something that resembled homework.  I’ve been through school, I graduated…I swear! My parents were there, they’ll vouch for me…and yet I feel like I am first-handedly going through elementary school again.  The homework, the spelling lists, the projects that require posterboard and glue and little stick figures representing historical figures.  Yet, as the parent, I am obligated to help my kids however I can and I, therefore, feel as if I’m getting a summer break from school too.

He keeps asking about it!??  Am I going to get my homework?  When are we going to start that work stuff? Did you forget to get that homework book AGAIN?

If my parents had put off administering a punishment, the LAST person on the face of the planet they would have heard about it from would have been me.  And the person they did hear it from would likely have had bodily damage after the fact.  Actually, the person that would have reminded them would have been my sister….thus the mouse issues and all that fun stuff…I am so justified!

Well, I finally got a Punishment Homework Book…an in-between 4-5 grade book that will keep him primed on his 4^th grade level stuff and start introducing some 5^th grade stuff.  He’s working on it now

At his request.  He is so bizarre. 

f.r.o.G.

–Anissa

Well, hello there, new and improved website!

Can I just get a shout out for my husband – the SUPERSTUD!

As you can see we rolled out the new look and we’ve kept the same name until we can make a decision on whether or not we even want to change it.  There are a few things that still need tweaking but they’ll be done over time and if you see something that doesn’t work, please let us know! 

Instead of a guestbook we are simply leaving comments available for each post and page.  We took out the photo album and we’ll be using Flickr, that little picture thing-a-majig on the left sidebar, you’ll be able to see the photos and to leave comments there. 

Peter and I worked really hard to get this thing from start to finish since Thursday.  It is one of those things that we needed to both be present to do and we made the most of his being here to complete.  We stayed up until 3 AM every night so that we could work long and hard after the kids went to bed, Peter pulled out some of his great tricks from the Big Bag of Computer Genius, and I did all the “Hey, that goes there. No, I don’t like that.  What if we moved that here.  Can you make that smaller?  No, make it bigger again.  I really want this, that and all that too.”  And this is the end result 

I gotta tell you, I’m excited about the changes!  What you don’t see from the user end is all the cool stuff it enables me to do and change and jigger around with.  There have been both encouragement and complaints about us making changes to our site.  We do appreciate both. 

Let me explain a little more about our decision to change things up a bit and the choice to put ads on our site.  Being a SAHM (Stay at home mom) is a blessing for me.  Not everyone has that option and not everyone would want to, but I love being at home with me kids.  Not that I don’t enjoy the much-needed breaks from them, but I do love that I can be with them without the constraints of a work schedule.  But it also allows me to be involved with their school on a volunteer basis, I get to stay active with the other cancer families I love, apply my time to the Pediatric Cancer Foundation, I’m going to be working on learning to grant write and work with the Giving Hope Through Faith foundation to get them money to help cancer families. Doing these things feed the soul and I know they are part of the plan God has for us in giving us these hurdles, but they don’t pay the bills.

I hope it doesn’t offend people that we’re going to be putting BlogHer ads on our site.  Some of you have really supported the idea, knowing that it is my way of writing “that book” that’s always in question and if I can help support the family then it’s a good thing. Others have been justifiably concerned that I’ll change the feel of the site to charm the masses.  That’s so not my intention, and I openly ask one and ALL to let me know if you think that I’m headed in that direction. 

I also want any families of children that I talk about often and whose child has a picture in our new “Kids that inspire us” page, if you let us know, I can take your child’s information off in a heartbeat.  We will never stop following your site, praying for your child, but if you’re not comfy with them being on our site, just please let us know. 

Peter has been my workmule all week and now he’s getting ready to pack up and head back to his Alabama home base.  I can smell the excitement in the air….smells a little like disgust/reluctance, but with more lemony freshness.  It’s been an up and down week, with both fun things and some not so fun things.  We got a lot accomplished over our time together, but Pete and I also had some really tense moments.  The definite move date hasn’t been made and we are both struggling with how to handle that.  Please please please pray for us as we work to make the best of a hard decision and that we make the right choices.  And that we not fight while we do it.  We don’t fight often, but when we do, it’s a doozy. 

I’m happy to announce that we have 5 butterflies fluttering around in our little habitat!  The kids were all “Look what WE did!  We have butterflies!”  I’m all “How about some God credit and WHAT ABOUT ME!  Remember me?  The lady with her hand in the smelly muck that made this all possible for you?”  No such acclaim was given and the kids were thrilled to see that all 5 butterflies made it through the incubation period.  They are lovely and we are going to name them and release them in about a week…I want to send them out alive because they only have a lifespan of 3 weeks and I don’t want to come out one morning and have to explain why the butterflies have died.  We’re planning to name them after our sweet friends we’ve lost and let them go in honor of each child.  I think it’ll be a very special thing for the kids, and me, to do. 

Peyton came to me this afternoon…after having eaten 3 oranges, 2 pickles, a peanut butter and jelly sandwich and some chips…and asked me, “Am I still on steroids?”  I told her no and she just shook her head and said, “Then why am I so hungry!?”

I have to share that there has been this amazing bonding between Nathaniel and Rachael.  What we’ve discovered is that the one thing that tears down the walls of siblinghood, crosses the barriers of girl/boy, closes the gap of years is a Nintendo DS.  These two kids have argued and bickered about nothing more than the fact that they have to share air for years.  Rachael was able to save up her birthday and allowance money and purchase a DS of her very own.  Now, more likely than not, these two are squeezed together, bent over their little handheld peacemakers and acting like…sniff, sigh…friends! 

And they’re QUIET!  Life is good.

f.r.o.G….fully relying on God

–Anissa

Ok so I think it’s technically summer, after a rather long day, the new site is up and I think I managed to import just about everything from the old site with about 7 minutes of hiccup time. 

My technical kung-fu is still kinda mighty. 

If you happen to notice something completely wonky, feel free to say so…you won’t hurt our feelings any.  There is one known issue where I’ve got to go back through all the posts and modify any external link that Anissa posted….unfortunately there’s no happy automagical way of doing it….it’s a manual process…of re-reading every post…over the past 2 years…anyone got a snickers? 

Happy blogging baby!

XOXO

Petey

P.S.  Many thanks to the awesome open source people at simplephpblog, yetanotherphpguestbook, and gallery that have provided us a method to share our story over the past 2 years.  The great thing about opensource software is that you never know who will use it, or how it will be used.  They’ll probably never read this, but their work helped to start us on the road to recovery as a family. 

One of my greatest friends out there, Paul Carlucci asked what he could do to help when we were first diagnosed.  It might sound funny, but one of the first things on my mind was to get me off the phone with my family (no offense family…LOVE YA!).  It’s just that in those first few days, everyone and their sister was calling us non-stop for updates and to let us know they cared…I appreciated and needed the words and prayers, but after a while you wind up forgetting who knows what and repeating the same story or leaving out bits of info here and there…Paul found simplephpblog….and shortly thereafter our blog was born. 

Today we met up with Mandy and Natalie Willis for lunch after Mandy went to clinic for a finger poke. Mandy and Rachael have really hit it off in the past few months. Close in age and with the chatter speed only found in little girls, they were destined to be friends. It’s been a rough few months for Mandy though. The amount of chemo she’s had has really rocked her and she has been in a really moody place the past few times the girls have been together. I guess Peyton’s steroid phases have been good in preparing Rachael for Mandy’s moods when she doesn’t feel well because when I’ve explained what Mandy’s going through, she understands the best she can. Rachael is a patient girl, with a big heart and she’s waited and waited for the breakthrough moment.

They had their moment today! Natalie has been hurting, watching her daughter struggle through dealing with all the physical, emotional and psychological changes of being thrown into a cancer world she’s not old enough to fully understand but more than old enough to fear. And she always apologizes when Mandy has an outburst. If I didn’t remember how it felt, I might laugh because it always takes me back to the days when Peyton would lay in my bed and scream at Pete, “You. Need. To. LEAVE! GET OUT!!!” and that grown man would leave the room in tears. I remember Peyton curling up into a ball on the floor of the clinic, unable to cry she was so emotionally overwhelmed, growling and biting anyone that came near her. I remember the flat-out fear and awe in the eyes of Nathaniel and Rachael when they would even venture to try to say hello to her or GOD FORBID touch her and she would react like a wild animal.

And we weren’t trying to make new friends at that time of our lives. We were desperately holding onto our sanity through it.

Rachael bounced to the car after a fun lunch with Mandy. When we got into the car later, she made the comment to Nathaniel, “Mandy was so much nicer. She is so much fun when she feels good.” I’m so proud of Rachael for being compassionate enough to understand the difference between someone who is mean for the sake of being mean and someone who can’t help the outbursts because of the way they feel. It’s sad that she has to know that, but she’s handled it well and she’s thrilled to have this special friend in Mandy.

We had our family group night at the CCC and at the end of the night Natalie and I did a child-swap. She took Rachael home for a sleepover and we got Zackary for the night. I’m sure I got the better end of that deal as the boys were darn near silent on the way home and went straight to Nathaniel’s room to shut the door and commence with the boy play. Both boys are products of a home with 3 women with father’s who work away from home, leaving them the sole producers of testosterone in the house. They get together and just wallow in the BOY of it all. It’s great! The brief moment I talked to Natalie on the phone, there was much high-pitched squealing and giggling. If she’s not mildly deaf by morning I’ll be surprised. If she’s completely deaf, I’m sure that leaves us half responsible for the hearing aids she’ll be needing.

Peyton had a ball at group tonight, being loved on by her favorite boy in the whole world, Cody Bertoch. She went in with these two pitifully thin ponytails on her head, the hair is getting so sparse from her constant shedding. But she was proud of those ponytails, limp and sad as they were and she pointed to them all night, “Do you see my TWO ponytails?” I think she equates more ponytails to more hair….would not shock me if she asks me to do four ponytails tomorrow. And I’ll do it if it makes her feel pretty, because bald or thinning or whatever you want to call it, she looks beautiful to me. She’s very frustrated with her hair, especially as she sees more and more of her friends with their hair growing back so fast. I know she looks at Adelaine’s long, blond ponytails and can’t quite figure out why she has so much hair. They got bald together, shouldn’t they get hair together? She’s always gorgeous to me.

I got some great news today regarding the upcoming plans for our site! A couple of days ago I registered with the BlogHer network. This is the biggest community of women bloggers, blogs as varied as the women authors behind them. This is becoming a powerful voice for women these days, and a great way of putting your words into the world. They also have one of the best ad networks available for blogs. I registered Hope4Peyton with them and hoped to be able to get some ads set up for the site, but I was disappointed to find out that they weren’t taking any new applications for their ad network and I added our name to the waiting list. They have millions of bloggers registered, they probably have thousands of blogs waiting on their list….they emailed me today with this awesome news!

“Hello! We’re not ready to open the ad network to general applications, but we saw your wonderful blog on our waiting list, and didn’t want to keep you waiting! While the general public is not able to register at this time (and we ask that you do not share this link at this time), we’ve enabled our application process for you here (link removed)

Please rest assured, we’ve already pre-approved your site, so if you can create your profile and either scan and email or fax in the documents you’ll find here: (link removed) we can get you all set up for ad code. In order to get your site added quickly, we ask that you please submit your documents within 2 business days of creating your profile. We know it can be tricky to get to a fax – so please email me if you’ve got any questions or problems.

Thanks so much for your interest in BlogHerAds! We can’t wait to have you in the network.

All the best,
Jenny”

I am so jazzed about this! Peter and I are scrambling to make some changes to the site we have currently so that we can put the ads up in the next few days. We are also making our plans to roll out a new website too. Please pray for this to be a success, it could mean many things for us. I’m hoping that it will keep me from having to find an outside-of-home job and also provide a platform to raise HUGE amounts of awareness for pediatric cancer. When I saw how many blogs there were for families battling autism, it really hit me that these people are raising awareness of the needs of these kids one reader at a time. The biggest blogs get hundreds of thousands to millions of hits a day…we are NO WHERE near those numbers, but I think it can happen with some work. I am excited to see what we can do with it!

Stick with us through the changes, although things might shift around a bit, it’ll still just be us. I consider how far God has brought us along this cancer journey and I can’t wait to see what lies ahead.

f.r.o.G…fully relying on God
–Anissa

Pictures from the Rays vs Cubs game

101 Reasons why we’re still married

Adelaine Powell, Molly Edwards and Rachael

Rachael and Peyton having a glorious SISTER moment

Adelaine, Molly and Rachael – 3 amazing cancer fighters!

Peyton and Maya Houtz