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When I get rolling

The past couple of days have been a blur for the most part. A good blur, but blurry-ish still.

First, let me just say that the responses to “Why do men have nipples” were hysterical and interesting! I was surprised that so many knew so much about nipples, it sort of threw me for a loop. The two best answers were about the anatomical capability of males to produce milk and the potential for a piercing. I think Stephanie was the first to give an answer with enough words that I didn’t understand for me to go “huh, wow…must be true!” So your prize is that whenever you do call me for that lunch that we’ve been considering for the past few months without ever making good on, I’m buying!

Thankfully the household has moved beyond the nipple quandary and onto bigger and better quandaries.

I drew up my in-a-perfect-world outline of what I’d like to make for a new website. Pete stared at it. He stared at it some more. He sort of shrugged and stared a little more.

First words were “I’m not nixing this idea….”

Soooo not going to happen.

My next plan (a.k.a. alternative strongly suggested by Pete) was to use resources already out there in the world, why reinvent the wheel? I picked WordPress, a blog software that pretty much rocks and has lots of cool bells and whistles that I can play with. I’ve started the process of designing the new website and I’m knee deep in copying over all the posts from Hope4Peyton into RandomlyNamedNewSite. Can I just tell you what a long, tedious and frustrating process THIS is! I am literally having to copy, post by post, everything over….like warm fuzzy little razor slices under my nails.

I’m hoping that while I sleep tonight the blog fairy will come and magically make all the posts appear in the new blog. I spent a great deal of this afternoon doing the copy/paste procedure and only got through July 2006-Feb 2007. That’s back when I posted about once or twice a week….it’s going to get nothing but more fun as we progress into the daily post dates. But I think in the long run it’s going to be with the effort.

My biggest mental dilemma is what to name the new site. As the new blog will pretty much be the old blog but NEWER, SHINNIER and have more STUFF, I’m stuck on what name will best represent our lives. Hope4Peyton was perfect when the main focus was about Peyton, but that slowly faded away into a Hope4PeytonAndLotsOfOtherBabbleToo site. I see the new site as this great way to introduce more of the world to our family, because, let’s face it….we’re a strange little family.

Names, names, names. Maybe that’ll be our next you-pitch-in idea. If you have ideas, throw them at me and let’s bounce them off the wall and see what sticks. Feel free to send me ANY ideas at all! They have to be better than what I’m coming up with at this point.

And on we go.

We had an absolutely fantastic time tonight with friends from the Children’s Cancer Center at a Tampa Rays vs Chicago Cubs game. Leo Astacio (dad of baby Leo) is employed by one of the Cubs players and was able to provide the families with some awesome seats for a game during the Cubs series here in Tampa. It takes a lot to disturb a rowdy, enthusiastic baseball crowd, but you know you’re up to the challenge when a group of cancer kids and parents sit down and manage to tick off people in every direction. So what if the kids would rather hang out than watch the game! So what if some of the parents would prefer to chat? We’re all about togetherness and if that means we annoy as a team, we’ll trust me, we are going SuperBowl/World Series/ World Cup in our division. It was great!

Peyton has bounced back nicely from her steroid phase. She’s still a little munchy, but the moodies faded away fairly quickly, I could totally have gone on my weekend getaway without any problems, but those are the issues we deal with. One weekend isn’t the end all and be all and now that I’ve gotten irritated because I could have gone and she’d have been fine, I’ll have that fresh in my brain for next window of opportunity. Although, sometime in the past week she learned a new phrase…”I’m on my steroids”.

“You need to help clean up your room, it’s mess!”

“I’m on my steroids, it makes me messy.”

“That’s the 4th yogurt you’ve had this morning!”

“I’m on my steroids, I like yogurt.”

“I’m on my steroids! I NEEEEED popcorn!”

I feel pretty lucky that we’ve made it 23 months with steroids in our lives and it’s never become a verbal defense until now. I’ve made excuses for her because of the steroids and I know those who know us and her understand that the steroids can make her crazy…like Tom Cruise hopping on the couch crazy…but SHE’S never used it as an excuse….it just was. Now she’s conscious of it as a “I can be as crazy as I want when I’m on steroids so let’s push the envelope” thing. 5 more months.

I know that 5 months in my mind is the END date. It’s always been the END date. That is the time that we get to leave the world of chemo behind and celebrate being done!!
Unfortunately, the past few months have taught us that it is anything BUT a certainty that we will be done with the cancer world.

With the relapses and losses of so many friends, it’s impossible not to consider that we’ll never be out from under this cloud of cancer. I know there are many who survive, go on to live long, fantastic lives…but here in this moment, on this side of the CURED line, it’s hard to hold faith some days.

I fear for my friends who are still fighting the battle, for the ones whose children have seen cancer come back and take a monstrous toll on them. I anxious for my daughter who is doing so well, that I some days feel like I live waiting for the other shoe to drop. I hurt for my friends who’ve loved, lost and have only cherished memories of their child. I pray for strengthened faith, for strong hearts and minds to get us through the roughest patches and the quietest moments, for the purpose to be made clear so that we can hold on until God can answer our many “whys”.

Of all these precious friends, I can only post a few at a time or it would overwhelm you, it does me.

Presley Dickson (name-PresleyD) is in the hospital with a fever, extremely low counts and possibly some pneumonia. Please pray that this little one is going to recover quickly and that they are able to get her medications straightened out so that her body is able to put up a fight.

Brooke Martin is still in the hospital, she’s going through the induction (or is it considered re-induction) to put her relapsed leukemia back into remission. She has a bone marrow aspirate tomorrow that will give the remission answer and if that gives good news they will have 3 months of treatment to get Brooke’s body ready for stem cell transplant. Brooke has a little sister Hailey, and when Hailey was born they saved her stem cells and if she’s a match for Brooke those saved cells will be a life saving gift. Please pray for remission, for a match between Brooke and Hailey and for Brooke’s many struggles with starting treatment again.

Connor Hernandez (Yes, Connor finally has a site!) is still in the hospital as well. His troubles are so numerous: a huge wound on his arm, a blod clot in his leg, lungs that need to be drained of fluid, a fungal infection, and that little thing called cancer lurking in the unknown. Since his relapse, Connor successfully achieved remission but with so many major problems attacking his body the cancer treatment has been on hold. He had a bone marrow aspirate and we ask for prayer that the cancer has remained gone from his body.

Jimmy Reichert was not so lucky. Word came today that Jimmy’s latest bone marrow came back at 35% leukemia cells, which means he’s relapsed for the 3rd time now. They had to hold his treatment so that they could get the aspergillus infection under control so that they could get him into bone marrow transplant. In the time that it took to remove the infection, the cancer has returned and his options are being decided.

Kate Perkins (name-SugarKate) is still at St. Judes receiving radiation for her brain tumor. Kate is having her own “I’m on steroids!” issues, but hers are much higher doses and they are reminders of the long days of high dose steroids and the insane rages and uncontrollable emotions and burning hunger. Pray for Kate to get through these miserable days of steroids with the support and love of her family, pray for her family who struggles to find ways to comfort her.

Each of these kids I’ve asked for special prayers for have siblings at home. Brooke has little Hailey, Connor has twin old brothers, Jimmy has two sisters, Kate has an older sister Belen. The brothers and sisters are scared, they are hurting because so much of the focus and attention has to be on the sick sibling, they are children of parents who are stretched to the point of breaking and who are trying to make the best life for all of them. As a parent who has sat in the hospital over the sick body of one child, thinking about the ones at home who needed me just as much…this is a pain you don’t know what to do with. You can’t be angry at your sick child, you can’t be angry at yourself because you can only do so much. Please pray for these parents who need to know that God will provide them the helpers and comforts to get the family through. Pray for the kids left at home, the ones who are sometimes forgotten in the critical rush.

I’m putting together a love package for Belen Perkins, because I know how much those meant to Nathaniel and Rachael when they were left at home when I had to go with Peyton to the hospital. Even though Peter was home with them, or Grandma was by their side, we were missing…our home wasn’t whole. These little pick-me-ups meant a lot to them and were precious gifts of encouragement and support for me. If you’d be interested in providing a sibling love package to one of these families, please let me know.

f.r.o.G…fully relying on God

4 Comments on “When I get rolling”

  1. #1 Holly Jo
    on Jun 19th, 2008 at 1:00 am

    As always, I am humbled by your words, seemingly taken directly from my heart!

    You speak for a great many moms who have been there or who haven't been there yet, but most likely will…

    Thank You for bringing to the surface what so many of us are feeling yet just don't quite have the words o courage to say.

    Reading your blog is an inspiration, a therapy for me really. It helps to know that, although our situations are not exactly the same, I am not alone in my fears and daily battles of the unknown. Thank You for helping not only myself, but so many others to understand what it is like to have a child with cancer and a family that must still function.

    Thank You for helping us all to understand that, although it feels like the world has ended and we want… need time to stop, it doesn't, and we must move forward, face the fears, face the monsters… and appreciate what we have right now.

    You are a wonderful person, an eloquent writer, and a great friend.

    The Covais Family


  2. #2 Patti Albritton
    on Jun 19th, 2008 at 7:34 am

    How about the daily choas of the Mayhew family? LOL. I'll try to think of something more creative, but really now – isn't that you and Peter's job? LOL.

  3. #3 Peg
    on Jun 19th, 2008 at 8:12 am

    Thanks for your post! It made me laugh.

    That's so sorry to hear about those children who are having struggles. I know when you hear story after story about relapses and such, it tends to bring your level of hope down. It was doing the same thing to me and I found a thread on the Leukemia and Lymphoma website under their discussion boards about children with cancer. Someone wanted to know about ALL survivors and this topic has had many responses.

    If you want to check it out, I have provided the link. If the link doesn't work, please go to that site under "Discussion Boards" and then "When your Child has Cancer" and you'll find it there. It is so refreshing and hopeful to read those wonderful stories. It will have to lift any cancer parent's spirits.

    Have a great day!


  4. #4 Angela
    on Jun 19th, 2008 at 11:16 am

    Life with the Mayhews

    I will keep thinking.