Hope4Peyton

There was a meme going around called “10 things motherhood gave me”. I have tons of opinions on that: stretch marks, saggy boobs, under-eye bags, my first experience of having someone poop down my shirt, all the best parts.

But the more I thought about it, I decided that I was better writing “10 things being the mother of a cancer child gave me”. This has been one of the greatest learning experiences of my life. I’m no one’s idea of the perfect mom, I’m a lousy housewife, I’m a mediocre soccer mom, but this life-altering experience has left a change in me that is astounding. I’m still a lousy housewife and a mediocre soccer mom. The way having a child changed the way I looked at MY life, having a child diagnosed with a life-threatening illness changed the way I looked at life as a whole.

Here goes: 10 things being the mother of a cancer child gave me

1. I’ve learned not to care what people think of my appearance. Not that looking nice isn’t important, but I’ve also learned that on the bad days, it’s ok to wallow in it. When I’m walking down a heavily populated hospital hallway, in my sweatpants and bathrobe, my hair hasn’t been brushed in 2 days, there might be some puke on my shirt and I’m wearing hospital issued footies…I’m proud. Because I got out of bed AT ALL today.

2. I’ve learned that it’s ok to walk away from it all and take a breather. Even though you feel guilty because your child doesn’t have the choice to take a break, and you feel like the worst parent in the world….I have to take care of me too. It’s something I heard a lot when I had a newborn, take time for you. I didn’t realize how hard that was until I was sitting on the floor of my closet, with the light off, holding the door shut with my daughter on the other side begging me to let her in. Sometimes you just have to leave and breathe so you can pull yourself together.

3. A phone call where you say nothing profound is sometimes better than no call at all.

4. I’ve accepted that I can’t do it all myself. I can’t really do 50% of it myself. I’m not ashamed to ask for help, to accept help and to be truly grateful for it. I learned that people who find themselves outside of the situation often want to help, but have no idea what to do. I’ve learned to just accept the generosity and compassion of others that allows them to help carry the burden we bear. And be eternally thankful that people care enough to WANT to help us. I have learned humility and pride at the same time.

5. I am no longer embarrassed to cry in public, I can hug a newly introduced person, I bare the most intimate parts of my soul for contrast and comparison. It helps, it’s like free therapy.

6. I understand that it’s ok to be angry with God, to vent your frustrations and anger at the situation you’re in. It’s impossible not to be full of all these negative emotions when you see such pain and suffering and loss happening all around you. When you can’t even comprehend a loving God that would let a child, any child, MY child, get sick and die, how do you not get belligerently furious with God. I also understand that God lost a child, watched him die a painful awful death. He gets that anger.

7. Being able to find the laughter in life, regardless of whatever you’re going through is a blessing. No matter how bad it is, there are always moments of joy, moments meant to lighten and soothe. If I can’t laugh, I might as well give up. People are kind enough to say that they like the positive attitude of our site, that they admire my ability to be funny in the middle of it all. Let me tell you, in the middle of it all is where it’s most important to laugh.

8. It doesn’t matter how smart someone thinks they are, what they feel is the right way to parent a child, no matter how educated their opinion, it doesn’t mean that they know what’s best for your child. I’ve had to shrug off overly opinionate strangers who felt I should take Peyton’s binky away, I’ve handled the LOOKS when I tell that Peyton crawls in bed with me EVERY night, I let her eat black olives and oranges for breakfast if that’s what she wants. I’ve also seen the horrified stares when I got on her case in a store for being ugly and hateful. How dare you bark at a cancer kid!? You know what? It’s my cancer kid and I have to live with her long after the cancer’s gone, so get out of my face!

9. I’ve become an oncologist, a research assistant, a personal chef, a therapist, a patient, a better friend, a more accepting mom, a pharmacist, a writer, a full-time-work-from-home-but-still-unpaid-mom, a referee, a coach, a nurse, an event organizer, an advocate, a charity taker and giver, and a motivational speaker.

10. I have strength in my heart, spirit and faith that I never knew I possessed. I’m very proud of it. The day Peyton was diagnosed I knew that I would fail her, I would not be able to handle this and she deserved a mother who could get her through it. I feared every day was the day I would lose it and become the person I most feared: a mom who was less than her children needed in every way. Yet, no matter how bad the day, how raw the pain, how real the fear…I’ve found my way through prayer, belief, faith and love.

f.r.o.G…fully relying on God
–Anissa

Late added ps…I’m going to challenge each of you who falls into one of these two categories to take the time to do the same. “What motherhood gave to me” or “What being the mother of a cancer child gave me me”. I would love to see them! anissa.mayhew@gmail.com

Ok…apparently I didn’t understand something in that last post of my wife’s.  So I clicked on the “Teen Choice Awards” link down there.

Key word:  TEEN

Yeah.  They do a little age validation thing there.  Nothing quite like being told you’re too old for something.

Heck, I still like monkey bars, driving fast and really loud music!  Of course now I only do 2 of those things at a time, so maybe I am a little bit too old.

Na.  I couldn’t be too old.  That would mean I’ve got responsibilities and…um…duties..and things…and such…oh crud.   Lovely.  Right.  Nothing quite like having life smack you square in the face with a dose of reality.

I think I’m gonna go play with legos.

Pete

My sister has been talking about this PTO that she has to take at work or she’s going to lose it.  She brought up the idea of a camping trip.  Not CAMPING camping….if I can’t touch butterfly crap do you really see me out in a tent?…but a cabin in NC owned by a generous friend. 

I get all excited and I’m all GO GO GO!

Then she gets that gentle voice.  The one that says “But……”

She used words like MOUNTAINS….RUSTIC…..NO TV.

I have a child with cancer, I have to be close enough to drive to a hospital if she should get a fever, a weird rash, a bug bite that turns into a staph infection, have her lips try to fall of her face…she doesn’t do it often, but when she does, Peyton likes to do it big.

There I am, mentally figuring out the logistics on this mountain cabin idea and it hits me….

NO TV probably means NO AIR CONDITIONING.

I’m right, there are ceiling fans, but it’s up in the mountains so it’s not that hot.  Ok, I can live with that. 

Angela tries to break it to me, “Um, how would you feel if there was no cell service up there?”

Like a naked newborn wrapped in bacon thrown into the tiger exhibit at Lowry Park Zoo.

Again.  I have a child in chemotherapy, we can’t go without contact to the outside world, I have to be able to call out in case of emergency.  Peter would also go out of his loving mind if he went a week with no contact.  Luckily, the cabin comes with a landline phone so we do have communication that doesn’t involve me, a smoky fire and waving a blanket rhythmically.

Then we had all the all-time, jaw-dropping, I-don’t-have-a-good-feeling-about-this moment when I wrapped my brain around the fact that there wouldn’t be any internet service.  Oh my stars and garters!  Which is good in a way because I need to learn to walk away from my technology now and again.  It’s bad in a way because I’ve heard detox programs are intense and I don’t know if I want or need my kids to see me with the shakes.

I’m by no means a pampered princess, but I do like me some of that good electricity and running hot water and broadband access!

We shall see.

Tomorrow we are headed up to the clinic so Peyton can get her bi-weekly fingerpoke.  We’ll see how counts are maintaining, but as she’s felt good and looks good, they’ll be in the normal range.  Her ANC (count gives us how reliable her immune system is and if she has enough chemo to keep it where it needs to be) was a bit on the high side and if it still is, they might up her dose of 6MP back to what it was pre-fungal infection in May.  It’s such a balancing game….keep the counts low enough that we know the chemo is effective…keep the counts high enough that she doesn’t get too at risk for infection and bacteria.

After which we have to run home to attend a meeting for the upcoming Pediatric Cancer Foundation’s Cure Kids Cancer Challenge 5K/1M run/walk event that’s in planning for September 13^th.  By the way, September 13^th has been recognized as “National Childhood Cancer Awareness day”.  Be prepared, you’re going to hear that A LOT over the next few months!

As it rained most of the day today and I was a big old slug after what feels like non-stop racing all summer, the kids and I just hung around the house.  So tomorrow I owe them some fun time and we’re going to the clinic…which does not fall under the fun category…then I’m taking them bowling!  This should be interesting because now they are all Wii-confident that they’ll be much better bowlers this time around.  I’m not even gong to remind them that the ball weighs 5 pounds, 4 ounces more than the remote and there is actual aim involved in a real game.

Keep those prayers going for Brooke, Jimmy, Connor and Presley (name:PresleyD)….they’re all still inpatient at the hospital, all still fighting hard against this awful disease.  Brooke’s day 8 bone marrow did not come back showing remission, so there will be another one in another week to see if they’ve gotten the cancer under control. It was a much lower blast (leukemia cell) count this time, but not anywhere where it needs to be.  No one in her family was a bone marrow match for her either, so pray that a match is found on the registry.  Please consider making the commitment to get tested and be a bone marrow donor, you could be the difference in someone’s fight for life.

If you’re interested in helping a fantastic bone marrow donor program started by a child who fought cancer and is making a huge impact on the world, please support Tampa native-CNN Hero Award winner Pat Pedreja and Driving for Donors.  He’s up for 2 awards, the Nickelodeon Kid’s Choice Do Something Award and the Energizer Keep Going Hall of Fame award.  Both of these awards would raise awareness for the bone marrow registry and raise much needed funds to keep the Driving for Donors program on the road. Pat and his family registered over 10,000 donors in 2007 and enabled 4 life saving matches!  Please help us support Pat and his mission to save lives by clicking on the links below and voting for him.

f.r.o.G…fully relying on God

-Anissa

One of my lovely daughters…we’ll call her R (because I refuse to call her by her name after this encounter) gave me a nice quick boot to the self-image. 

If you’d ever seen my keychain, you’d marvel at the fact that I don’t need a bionic arm to life the sucker.  It has about 12 keys on it…4 of which I know what door it opens….two car remotes, and about 6 of those little convenience tags….membership to Blockbuster, Borders Rewards, so forth and so on. 

R had to get something out of the van so she took the keys out and when she came back in, she was thumbing through the tags. 

“Mommy, is this your gym thing?”

“Yup.”

“Do you go there anymore?”

“I haven’t in a while.”  OK!  My New Years Resolution died a painful death in February. 

“I had fun there, the playroom was cool.”  She went ONCE! 

“We’ll go back soon.”  So I keep telling myself

“Yeah, I think it’s about time you went to work out.” 

OUCH.  Can I just say OUCH!!! 

“We’ll go back.”

“When?  Can we go today?”

“No, baby, but we’ll go back soon.” 

As she was walking away….”We’re never going back to the gym, are we?”

Funny, I just had the same conversation with my muffintop the other day. 

f.r.o.G.

–Anissa

I really like my Tom Tom GPS that I got when we bought the new van.  I’m terrible with directions, Mapquest had a serious vendetta against me and I can’t tell you how hard a time I have driving down the highway, with my paper in hand trying to keep one eye on the road and one eye figuring out where I was on the page.  I was so excited when I got the GPS, my days of wandering lost in the streets of St. Pete were over!  I would confidently get from point A to point B without need to call Pete and ask “hey, are you near a computer?” 

But here’s the problem.  I need Tom Tom to say, “Hey, Anissa, next to that Citgo is a white house with 2 big shrubs in the front, you’re going to turn left right after you see the brown cat run across the road.”  What Tom Tom says is “Turn left in 500 feet.”  I’ll be very honest…I have no perception what 500 feet looks like, let alone what 500 feet looks like at 35 miles an hour, how many of the 500 feet have been used up in the time it took me to look up at the road and try to gauge 500 feet.  And if there’s two streets close together, which one looks more like a 500 foot road?  But I AM learning to understand what Tom Tom is talking about and getting more comfortable with its instructions.

Until today…Tom Tom told me take a right…I was in the middle of a bridge. 

I think Tom Tom is trying to kill me. 

The kids and I got up bright and early…early for a summer day…and met up with the Willis family to caravan down to Clearwater Beach.  We went down to the marina to catch a day cruise courtesy of the Brad Richards Foundation. 

Rachael and Mandy Willis

Rachael and Bella Cerchione (sister to Angelo Cerchione)

Peyton and her cousin Lexi Tucker (sister to Zach Tucker)

Rachael getting a big girl education from Ariel Kesler (sister to Sierra Kesler) and Alannah Willis (sister to Mandy)

Zack Willis, Jared Hawkins (brother to Nikki Hawkins) and Nathaniel grooving the guy thing

My future son-in-law, Cody Bertoch!

It was a fun-for-all with the kids running from level to level of the boat, checking out the view (the kids got to see some dolphins!) and spending time with bunches of our cancer family friends.  There is no way to explain how important these events are…these are the days that we spend bonding together outside of the hospitals and clinics, just getting to know each other better and strengthening our friendships.  It’s an awesome opportunity to catch up on each other’s lives and to just sit back and relax and laugh.  We need that. 

These are friends unlike any I’ve ever had.  I don’t know if there’s a real way to explain the depths of caring and understanding that we have for each other, probably because we know that no one outside of our world COULD understand it.  It’s a blessing to have.  In our early days of diagnosis, we thought we were doing as well as we could in coping all the changes in our lives.  We thought we were handling the fears and anxieties pretty well.  We were so wrong.  I don’t know if we knew how wrong we were.  It wasn’t until we met the other families, had people to give us the amazing support of understanding that we realized how isolated and alone we felt.

Natalie Willis pointed out that there are so many things that the books never prepare you for.  I remember that the social worker at the hospital gave me a great book about pediatric cancer, a book that outlined so many things and gave stories of families.  But there’s no preparing yourself for the reality of a child that becomes someone that you don’t even recognize anymore, for the struggle to maintain a normal life during the most stressful of situations, what it truly feels like to fear.  And there’s no one right way to handle it, to tell people “this is the best way to get through it”.  I know for us, these other families, this support group, these beautiful days of friendship are what’s gotten us through. 

A HUGE thank you to Brad Richards and Kasey Dowd and the Brad Richards Foundation for giving us such a wonderful day. 

I got a tremendous book today.  I am only a few pages into it and I’ve already bawled like a baby because I know how the story ends…an amazing boy’s triumph over death in the arms of the Lord…a family’s grief used to work tremendous good in the lives of others…a family that would reach out to many in need and become friends to all.  I got my hands on Sherry Tucker’s book “Unfinished Love: Walking by Faith Through Pediatric Cancer” and I am profoundly grateful that God brought these people into my life.  I never had the chance to meet Zach, the Tucker’s beautiful son who battled cancer with the greatest courage.  I am also hesitant to start really reading it, I know it’s going to hurt to read page after page of the Tucker’s pain, but I also know that the faith that they share, that they have exemplified will be a lesson in how to handle the most horrific struggles with grace and love.  If you’d like to get a copy, Sherry will be having book signings in the near future and I will make sure to post when she has them scheduled.  You can also order the book on Amazon.com.  I’m not going to lie and say it’ll be an easy read, this isn’t a fictional story of loss, this is a real woman who prayed over her much-adored son as he breathed his last earthly breath.  But you will be moved and inspired and you will fall in love with their family as much as we have. 

f.r.o.G…fully relying on God

–Anissa

ps…more pictures of the day on the Flickr link on the left sidebar!