Hope4Peyton

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
—Anissa
www.twitter.com/anissamayhew

 

I am all about answering honestly when kids have questions. I can try to “pad” the answers when I think the answer might honestly be out of the realm of comprehension or appropriateness, but honest nonetheless. There have been a couple of “You’ll have to ask your father about that one” speeches, but I’m pretty ok with answering the questions when they come.

Then comes the one you just CAN’T answer.

Nathaniel – Hey, you’re still peeling

Me – Yeah, a little

Nathaniel – You’re peeling on your boobs, mom

Me – Ummm…yup

Nathaniel – Wouldn’t it be bad if your nipple peeled off?

Me (mentally) – ARRGGGG!!! Where are you going with this?

Me (in my outside voice) – Yeah, that would be pretty bad

Nathaniel – Why do we even have nipples?

Me (mental voice has now passed out from the whole “why are we even having this conversation” of it all) – Well, women who are going to have babies….milk…feeding…. so forth and so on…breastfeeding basic

LONG pause

Tick, tick, tick

Nathaniel – Why do men have nipples then?

I will give a big prize to the person who can answer that question. I don’t know what the prize will be exactly, but if you can come up with a logical answer, I will find something good to send! And, just for your information, the cop out answer of “well, that’s the way God planned it” really doesn’t cut it for him. Nathaniel’s pretty sure that if there’s a purpose in women having them, there must be some equal opportunity action going on for men nipples too.

And I will turn over my life savings…all 264$ of it to the person who can answer this one as well….Did Adam and Eve have belly buttons?

I can’t wait for school to start back up!

f.r.o.G.
–Anissa

I’m in the middle of trying to decide how best to implement some changes to our site. Our greatest hope is that the near future brings us to the situation where we no longer have to blog on a daily basis about life with cancer. Although it will always be a way for us to raise awareness, support and encourage our fellow cancer families, I’m hoping that it’ll become less about Peyton and her cancer needs…because she won’t have them…and more about our family and day to day life. How does that differ much from now?

I really have no idea.

But I am a furniture mover. I get bored with things and have to reorganize on a regular basis. In fact, our living room had been in the same formation for so long that I actually moved everything in our living room, including our enormous entertainment stand with the tv still in it. It took me 45 minutes of shoving and grunting to get it from one end of the room to the other…only to realize that there was no cable long enough to get the tv hookup TO the tv, but that’s a whole other issue. I just have to move things around occasionally to get a different perspective on things. It makes things look newer and shinier again to mix it up a little.

That’s what I’m thinking about doing with the site. I’m considering giving it a bit of a face lift and changing a few things and we’ll probably start putting some ads on it to see if we can make a go of it as a profitable thing. I can’t tell you how many wonderful people have complimented me by telling me that I should write a book. I’d love to, but I also feel that I AM writing my book, just one post at a time and you get to read it for free!

I’ve been reading and considering these professional bloggers who do what I do, just share their lives online and let it all hang out there, and they are able to convert that into a money making venture by taking advertising. We are talking 6-figure executives that are able to walk away from their day jobs and support their families based on their blog income. Ok, WHAT am I not doing right here?

I’m sort of torn about turning my daughter’s cancer website into a job, but in a way, that is what it is already. I spend a lot of time writing and thinking about what to post, sometimes it comes easily, sometimes it feels like I’m cutting a vein and bleeding emotionally all over the keyboard. This thing started out as a way to share what was happening with our lives and Peyton’s journey through cancer, but we didn’t like CaringBridge for what we wanted to do. It has changed directions and taken me places I never dreamed it would. I truly love the moment that I know I’m going to sit at my computer and start sharing whatever news or insight is going to come tumbling out. We have felt such a sense of community come from the site, we’ve been blessed by the support and love of so many.

I’m not entirely sure how this is going to play out, it could happen quickly or Peter and I could tumble it around mentally for a while yet…because that’s how we roll. But if I can keep doing what I’m doing and be able to add to the household income, how is that a bad thing? Hmmm, stay tuned for more on that.

I’m also trying out some new technology! I found Twitter.com. I picked it up from some other blogs that I read and enjoy and have found it to be entirely crack-me-up goodness. I’m now able to receive little bite-sized snatches of entertainment throughout the day from anyone who “twitters”…meaning they send out brief little message whenever the urges occurs. This means that I can get great little laughs when I least expect it, which is always a good thing. You can receive twitter messages via the web or your phone if you do text messaging. Better yet, you can sign up and send messages to all your friends too! I’m going to try it out and if anyone is interested in following my attempts at Twitter, you can check it out at this link and you'll be notified whenever I send out a random message…and I do mean RANDOM, don’t expect nuggets of wisdom or anything, it might be “Sale at Big Lots!” Who knows?

Now back to our regularly scheduled program.

Peter made it safely home Friday night by bedtime to much rejoicing. He had to work as soon as he set foot in the house, but it was good to be able to look at him while he ignored me. We did some projects around the house today, which the kids just loved! Hey, guys, dad’s home and now you become indentured slaves…and you thought we had you just because we liked kids. Sillypants!

Pete says to the kids, “Alright! It’s time to clean up because DAD IS HOME.” From a 36 year old man who walked in the door with a hamper full of dirty laundry and asked what’s for dinner….at 10 PM.

I looked at him and said, “The irony is just killing me, you know that, right?”

But we did get a lot accomplished and still managed to just sit around and have good fun lazy time too.

I have to share with you that one of my big concerns of Pete moving to Alabama was that he would get up there and never wake up. I had visions of him being fired in the first two weeks for showing up at work at noon ever day. That’s why I bought him the cool rolling alarm that hides itself while beeping madly if you dare snooze it. But he tells me today that he got himself a new alarm clock because the annoying-as-crap one wasn’t cutting it for him.

This is apparently his new morning routine.

7:00 AM – his cell phone alarm starts going off, a nice soothing ding-ding-dong that never stops because he makes sure to leave it in the kitchen where it’ll wake up everyone in the apartment complex, but barely rouses him to a coma-level consciousness.

7:20 AM – he finally realizes that the ding-ding-dong is not a part of his dream and he acknowledges that he should probably try to move from his drool-laden pillowey haven.

7:30 AM – the new alarm clock goes off. From his description, the new alarm clock all but walks across the room, rips the covers off him and shoves bricks of ice down his underpants.

He probably bought it because it reminds him of me.

I realized that if we could recreate the YUCKY.SKIN.SCREAM in an alarm clock, we could probably ensure that billions of workers were never late again.

All in all, Peyton’s suffering through this round of steroids better than I’d thought, but we’re not quite done yet and it’s traditionally the days following the last dose that everything gets “Girl, Interrupted” around our house. She had a great time at her grandma’s and got really grumped out that she had to return to the hellhole known as HOME. To be left with THEM. THOSE PEOPLE. The ones who talk to her and expect her to do things for herself and won’t sit and play Ants in the Pants with her for hours on end. But once she got past that she was thrilled to see her daddy and perked up pretty good. She’s definitely not running on all 4 cylinders, she’s tired and I can see that her color’s off and she has some definite circles under her eyes. She’s also starting to eat like a maniac, finishing off 4 scrambled eggs this morning and before I got done cleaning the pan she was at my side asking for more. Her little belly is tight as a drum and there’s some swelling in her face from the steroids. I don’t know why the Methotrexate she gets spinally seems to hit her so much harder than the doses she takes orally every week, but it does. But she was still able to find her silly mode and enjoy a bath with mom and some tickle time on the couch.

I hope you all have a wonderful Father’s Day tomorrow. I am ever thankful for Peter and the amazing dad he is to our kids. There is nothing more wonderful than realizing that God has blessed you with a soulmate that cherishes you and the family you’ve created together. Parenthood wasn’t something that Pete and I had anticipated when we first met, but it is a gift that we’ve always been thankful for. We plan to pamper daddy with lots of love and typical Mayhew craziness and remind him how much he is loved.

Happy Father’s Day to all the dads.

We love you, Peter.
We love you, Dad (mine – Dale).
We love you, Dad (Pete’s – Bob).

I wish I’d written this, but Peter will appreciate how hard I had to hunt for this one thing from this ONE writer.

Here's to the Fathers…

Here's to the fathers, who always begin,

on the outside of children, but looking in.

Such curious men snapping cameras like mad,

recording the moment, they turn into "Dad."

Here's to the fathers, who put in their time,

who don't say to mother's 'that's your job, not mine'.

Who wipe chins and noses and never say "won't"

who do with the diapers, what some fathers don't.

Here's to the fathers who manage to stay


when so many fathers are turning away.

When so many run, leaving families to rot,

here, then, a cheer, for those who do not

Here's to the fathers whose big money dreams


die in the comer while their baby screams.

And yet without anger, dread or regrets,

they comfort the child, hold it close to their chests

And as the child grows, they grow with it too

learning a depth that they never knew.

And soon they are older, their hair slightly gone,

chasing two children around the front lawn

Or car-pooling teams to Little League games,

buying them hamburgers after it rains.

They mend broken dolls and fix broken wheels,

they cringe when their daughters, try their first pair of heels

They reach in their pockets, but never keep count,

they pay dear for parenthood awful amounts

They postpone their plans to sail across seas,

instead they sing "Barney" and bandage skinned knees

Here's to the fathers who get off the phone,

to hear their sons practice their new saxophone

Who leave work to see their daughter's recital

Here's to the heroes, who work without title

For this is a world now full of neglect,

with everyday stories of lives that are wrecked.

Of fatherless children who take up with guns

to kill other children of fatherless sons

Divorce shattered families, childhood's derailed,

mothers still waiting for checks still un-mailed

You wonder what wrongs these souls ever did

to make a grown man turn away from his kids

So here's to the fathers who won't compromise

who see a light shining in their children's eyes

And feel a rare glow as if from a gem

and know that once someone saw this glow in them

For all the good boys they have raised in the world

for all the examples they set for their girls

For all the loved children whose stories they'll tell

Here's to the father's that taught them so well

Happy Father's Day!
(Mitch Albom, 1996, The Detroit News)

f.r.o.G…fully relying on God
–Anissa

One of Rachael’s birthday presents was that butterfly house that has a commercial on Nickelodeon every 2.5 seconds of the day. She wanted it and got it for said birthday.

Nathaniel got an ant farm for Christmas. It was so cool, it was a clear plastic get up full of pink gel that we could watch them tunnel and travel through. They ate it and the worst it got was that once I had to open it and pry out a dead ant that its fellow worker ants had so nicely carried to the top of the surface. We popped the top every couple of days to give them some energizing air and that was it. Just sit back and watch.

This butterfly thing is pretty nasty….nasty if you’re not into touching nature and all that crunchy granola stuff….I’m sure it’s gloriously one with the earth for all those who like that kind of thing. I want my nature via Discovery Channel, thank you very much. We had to mail away for the larvae to get started. 5 little caterpillars come in a cup with a bunch of food…also known as brown looking crud that made me gag a little every time I looked at it…and they just hang out there until they get full and then they do their spin-y, hang from the ceiling and go all pupal.

The kids have diligently watched and checked every day to see when they would start wrapping their little shells and then we have to transfer them from the cup to the house…I use the word WE so liberally. I had to open the cup, which smelled like I can only imagine a camel’s abscessed tooth would smell, and dig out the little cardboard insert that the caterpillars were now stuck to.

My hand touched the brown muck! Again, that nice healthy gag reflex. I am so grossed out by this point and I’ve got 5 caterpillars dangling from my hand now and I look up and my kids are not gaping at me with awestruck expressions of Holy-cow-you’re-my-mom-and-I’m-so-impressed. In fact….they’re no longer even in the room.

“HEY! Where are all of you?”

Rachael came in from the office where she had gone back to her video game, Nathaniel comes in from Lego-land and Peyton didn’t even bother to come back.

“Why am I doing this by myself? This is gross, and it’s YOUR present, Rachael!”

Rachael says, “You’re the mom, you do all the gross stuff, that’s your job.”

Nathaniel HAD to open his mouth at this point. “And you cook, mom. WOMEN are supposed to do that too.”

Thank you, my knuckle-dragging caveman of a son, go back to inventing the wheel and discovering fire and I’ll just sit back here and slowly drown in the sea of chauvinism.

The soon-to-be-butterflies are in their future home.

I made Nathaniel scrub toilets and fold towels today.

f.r.o.G.
–Anissa

I read a lot of different blogs and there is apparently this thing gong around to write down 50 thing you like about yourself. It was harder than I thought, but here are my 50.

50 things I like about me

1. I have faith that I’m actually going to find 50 things I like about myself

2. I have friends from grade school that I still keep in contact with

3. I can make my kids laugh until they cry, or wet their pants, whatever comes first

4. I’m not afraid to dance in public

5. I embrace my bad hair days

6. My bookshelf is completely filled with randomness

7. I never felt the need to read selections based on Oprah’s book club

8. Although no one else on the face of the planet could do it, I understand my filing system….the registration for my van goes under D for “Drive”

9. I never listen to voicemail, I just return calls

10. I share my Ipod with 3 kids so the playlists include Soulja Boy (really!), the entire soundtrack to Hairspray (of course) and 3 different version of “the itsy bitsy spider”

11. I can drink a boot of beer in under 60 seconds

12. I think Howard Stern is an ass

13. I picked great parents to be my adoptive family

14. I have a sister that is my friend

15. I’ve learned to forgive AND, if not forget, at least not obsess about until I feel a muscle clicking in my jaw

16. I am a better parent than I thought I’d ever be, just to MY kids, don’t offer me any of yours

17. I’m a better wife than I ever dreamed of trying to be, but the bar was set pretty low on that one, so I had nowhere to go but up

18. I talk to strangers

19. I can put on pantyhose while driving

20. I am unashamed of my caffeine addiction

21. I love that my kids love the merry-go-round because it gives me a reason to get on without being creepy

22. I can’t fathom spending 3000$ on a purse

23. I still cry EVERY time I see “Terms of Endearment”

24. I worry that I’ll become Shirley Maclaine in the aforementioned film

25. I ate only popcorn for the first 3 months of my pregnancy with Rachael

26. I snore

27. I enjoy folding laundry once I get started doing it

28. I sometimes read in the bathroom, forget where I’m at and then my butt’s all numb for a half an hour afterwards

29. I wear my seatbelt

30. I’m a stacker and a piler when it comes to organization

31. I really hate all pets that resemble rodents

32. I take great pictures of my kids

33. I pray every day, usually all through the day

34. I’m working on my potty mouth

35. I’ve learned that support group is a great thing

36. I can cry without shame now

37. I’ve learned how to buy jeans that fit someone with no hips and short legs

38. I love movies and tv shows with no educational value

39. I’m a night owl

40. I put up with braces at 30 years old so that I can smile freely now

41. I had to learn to appreciate my unique look growing up in an area where there was NO ONE that looked anything like me and I felt like a freak

42. I get to be mom to my 3 amazing kids

43. I actually married the RIGHT one!

44. I’m not scared to hang all my vulnerabilities out there and let the world know it’s ok to feel

45. I own 15 pairs of flip flops

46. I have tremendous friends and each one is a gift

47. I can ask my husband if I look fat in something, he tells me the truth and I don’t get angry

48. I’m thankful for the struggles in my life, they make me who I am

49. I’m pretty good at a lot of things, which I guess is better than being REALLY rocking at only 1

50. I was never a cheerleader, but I did knock myself unconscious trying out for color guard

I would love it anyone took the challenge, wrote out your 50 and shared it with me! Email it to Anissa.Mayhew@gmail.com