Hope4Peyton

I can’t even begin to tell you how excited I am about what happened today at clinic. Peyton got her port accessed and she got her chemo, but that’s all pretty normal and mundane.

The big thing was sitting down at her “Binder of Many Papers” and having Cindy (the greatest nurse with the greatest news!) tell me that we were mistaken on Peyton’s projected end of treatment date. I finally figured out how I was so off. I’d had it in my head that it was 3 full years of treatment forever because I was told that we’d do radiation at a year because that’s where it fell in the protocol and she’d have 2 years of maintenance. What I didn’t realize was that maintenance actually started 6 months before radiation!!! That means that she’ll be finished in October of 2008….2008!! This year! She’ll actually celebrate her 5th birthday out of treatment.

I was actually dizzy for a moment when that hit me. I guess that July 2009 seemed so far out of reality for me that I hadn’t really considered the end of treatment. But this date, 9 months from now makes it REAL. She’ll be out of treatment, she’ll be in remission, she’ll be so close to being a full-on survivor….WOW.

Math was never my strong subject, but I have never been so happy to see a counting error in my whole life. I just stared at that piece of paper forever trying to make the words sink in. It was awesome! I was so thrilled that my brain actually left my body and puddle on the floor where I left it when I took off from the clinic without picking up Peyton’s chemo from the pharmacy.

I had to call back to the clinic and tell them that just in case the pharmacy called and said that I didn’t pick up Peyton’s prescriptions…I didn’t. I was too high on the news!!

The light at the end of the chemo tunnel just got a lot bigger and brighter, my friends.

It’s 9:00 PM on the 22cnd and 10 years ago right now, Peter and I were sitting in a room in a hospital together. He was playing on a Nintendo that he’d hooked up to the tv in our deliver room and my mom and I were playing cards. And we were waiting, just contemplating our last hours before we became parents.

I had been pregnant for what felt like a million years, I was roughly the size of a Buick and I was done with the whole baby-on-the-inside thing. I’d actually told my ob that if she didn’t induce that I was going to reach up there and grab him by his head and yank him out myself. I think she finally believed me.

So, there we were. Completely incompetent in the ways of parenting, totally unprepared for what changes we were about to undertake, but joyfully awaiting each wonderful, unexpected moment of it.

The morning of the 23rd I was induced with my mom and dad present….and can I just tell you having my dad in the delivery room was an EXPERIENCE for both of us….so much so that when I asked him if he’d like to come for Rachael’s birth he actually turned white and shook a little bit. My mom used to be a labor and delivery nurse, so she was Pete’s spine during the day….my dad was there to be the photographer and to make sure that I had lovely pictures of this beautiful event forever…Peter’s only job was to NOT PASS OUT.

I had the wonderful chance to have my mother scream in my face because I wouldn’t listen to the doctor when he told me not to push, I had to listen to Peter drone “Be a floppy rag doll” over and over again because that was ALL he could remember from Lamaze class, seeing as how we’d both fall asleep every time they turned the lights out to do the relaxation exercises….and I got to tell my dad “If you flash that light in my face one more #$(@#)*$#@(%#$)*@#$ time I’m going to scream!” I never saw the camera again. I have no beautiful pictures of my son’s birth. I have vague memories of my dad fading away from me quietly and quickly.

Pete’s dad chose an exceptionally inopportune time to call on the phone right in the middle of pushing and I threatened to take off Peter’s baby making material with something rusty and dull if he didn’t make it stop…or maybe I just used my inside voice with that one….but the look I gave him must have gotten the point across. Peter reached over and flipped the phone, but didn’t hang it up. Peter’s father got to hear the entire birth of his first grandchild because he stayed on the phone the whole time. I always loved that.

Nathaniel was this giant 8 lb, 11 oz baby, he was the darkest shade of purple I’d ever seen, he looked like a great big eggplant with hair and lips. But he was beautiful and I never knew that it was possible to love that wholly and completely. He was gross and pretty nasty, but the most glorious thing I’d ever laid eyes on.

Tomorrow that purple-headed baby that tried to bring my spleen along for the ride when he was born turns 10. He loves his video games, he loves his bike, he’s one heck of a chess player, he’s funny and goofy and a can’t carry a tune in a bucket. He does great dances…the sprinkler and the robot are his favorites…he’s at that awkward stage where his arms and legs are growing faster than the rest of him, he has yet to grow into his ears or his teeth and he’s just wonderful. He is a intensely thoughtful, compassionate young man and not a day goes by when I don’t marvel at the person he is. I made that person…..yeah, Pete helped some too, but I get all the credit because I did all the stretching and pushing!

There is no way to explain the ways that God has blessed us without our asking, without our wanting, without us being prepared or deserving. But he truly has.

f.r.o.G…fully relying on God
–Anissa

So much of raising kids is confusing. Maybe it’s just MY kids that are confusing. Or maybe it’s just me in a constant state of confusion.

Whatever!

Peyton had her first well visit with a pediatrician since her whole cancer gig started. We happened to see the doctor that was the doc that ordered the blood tests that led to her diagnosis. His was the first voice I ever heard that used the words “your daughter” and “cancer” in the same sentence. I had this weird feeling in the office with all these kids that aren’t going through what she is, sitting outside the office in the truck because I can’t imagine letting her sit in a waiting room full of sneezing, coughing, runny nose, stuffy head, Nyquil-commercial-candidates. I heard the parents talking about how inconvenient it is to have to take the day off of work to run the kid in to be checked out. I heard one tell her daughter “You’d better be really sick for all the trouble you’re causing.”

I wanted to run over and slap that woman’s face and tell her “Don’t ever say that! Be glad if you get to walk out of here and it was nothing. Don’t ever take her health for granted! Are you stupid? Are you blind? Because I was!” Because the memory is so fresh in my mind of what it felt like to sit in that office and roll my eyes at a fever, waiting to hear about the strep or viral infection that was causing it. Walking out confident in my child’s tomorrow.

And 18 hours later having that tomorrow shattered into a million pieces.

The ped was happy with her regular progress, her height is in the lower range of normal, her weight in the higher range of normal…ahh, just like her mama I guess…and her eyes are great, heart sounds normal, everything fine and dandy. We talked about vaccinations that aren’t up to date, there are some that she just can’t have. Kids with suppressed immune systems can’t have any live vaccines, but there are still some she should have and can have. The other two kids are up to date on theirs, but he also said that there are adult vaccines that Peter and I should check into. Overall, he was pretty happy to see her looking so good and he said that he gets regular reports to add to her files from the oncologist’s office.

An interesting thing that he did was put on her school reports that she’s “normal”, as he put it. He didn’t want to make an issue of her having cancer because he didn’t want to be a problem with getting her into daycares or school. It didn’t even occur to me that it would, but I guess it could be. She’s already been turned down for life insurance…through Gerber! That sort of hurt. It made me realize that this was a lifelong thing and perhaps she’ll always have trouble getting insurance because of it. She will darn sure never be able to go without private insurance, she may be uncoverable, but I don’t know if there’s a time when she’s been in remission long enough that it won’t matter anymore.

Other than that we had a pretty ordinary day. I took the kids bowling again…and Rachael managed to do that thing where she bounces the ball between the bumpers….again. We also found out that using a ball to try to bounce another ball down the lane doesn’t work, apparently the shuffleboard method doesn’t work on bowling balls.

And I have to share Rachael’s new confounding idea. This child has to have a nightlight. She has a lamp in her bedroom because a small outlet nightlight wasn’t enough to get her through. For a while we had to leave the hallway and bathroom lights on so she could get to sleep. When we’ve been in hotel and such, we HAVE to leave the bathroom light on so she can lay there or she just says “It’s too dark” over and over again. Obviously all those Stephen King books I read while pregnant did a real number on her.

She comes to me tonight and asks for a sleep mask.

Right.

“You know those go over your eyes, Rachael.”

“Yes, but I want one.”

“Why?”

“Because sometimes it’s too bright in my room at night.”

“We could just turn off the nightlight.”

“NO! Then it’s too dark!”

“What does it matter if the mask goes over your eyes and you can’t tell if it’s too light or dark anyways?”

“I’ll just know if it’s too dark, mom, I’ll just KNOW.”

Ok, whatever, I’ll let your therapist deal with that down the road someday.

f.r.o.G…fully relying on God
–Anissa

There are some days when you realize at the end of the day it would have been better to have just crawled back between the sheets and kept your butt in bed. Maybe today wasn’t completely awful, but tonight I’m just really worn out and looking forward to tomorrow being a new day.

I think the starting clue was that my first two emails of the day were word of two children who had passed away from their cancers. Devastating. One, I only knew through the words and praise of others, the second I never knew at all. It’s just the fact that the world is now short two beautiful children and two families are grieving that loss in a monumental way. It doesn’t matter how well I knew them or didn’t know them, it sure started my day off with a hurting heart.

The more inconsequential bummer of the day was when I realized that someone had stolen all the awareness magnets off my truck. Yes…someone took the time to peel off and steal my “Childhood Cancer Awareness” and “Leukemia and Lymphoma Society” ribbon magnets right off the back of my truck. That ticked me off so bad, but the kids lost it when they realized that whoever did that stole their school magnet off as well. I mean, REALLY! Are you kidding me? I sure hope it brought them a lot of joy because it had better have been worth the way it made all of us feel.

The kids had been invited to participate in the Gasparilla Children’s Parade, which is the clean child-friendly version of Tampa’s version of Mardi Gras. We celebrate pirates with alcohol and bead throwing, it’s a good time. It was our first year being on a float and we were excited about it because it’s one of the bigger events of the year. The Fore the Children Foundation was our hosting float and we were prepared to party down!

Now, the kids did great during the walk to the float…we parked at the beginning of the float line and ended up walking over 118 floats down because ours was the LAST float in the parade….of course it was. But the kids handled the seemingly forever walk because we had lots to look at and it was fun to see all the Gasparilla Krewes getting ready for parade time. We finally got to our float and we spent an hour just having fun. We chatted with the other families, we went through the many boxes of candy and beads that we were going to get to throw, the kids played games, Peyton had her first introduction to port-o-potties.

It was time for the parade to kick off when we got the announcement that the whole thing had been cancelled because of weather. Storms were approaching and they weren’t willing to chance it.

Oh despair!!! The announcement was a huge disappointment to everyone there, from those who’d spent months in planning this event to those who wait each year for the chance to come down and spend the day with their kids.

Then came the fun job of walking our disappointed kids back the mile to our cars…in the beginning rain…good times. Penny Hawkins and I had our whole brood there, 6 kids, Nikki in her wheelchair with little Will and Peyton slowly crushing the life out of her legs…her OT/PT person is going to be “What, did you decide to go all Chariots of Fire on me this weekend?” No, I just sat with two preschoolers on my lap for a freaking mile! But it made the walk so much faster. THANK YOU, Nikki, for letting them sit on your lap!

However, it wasn’t fast enough and the weather was getting consistently worse and Penny and I decided to just leave the kids with her kids’ father at some parking garage where they would be dry so that she and I could rough the rain and get the vehicles.

Brilliant!

There was a moment when Penny and I were so close to the truck that I could actually see it for all of 3 seconds. I could only see it for 3 seconds because at exactly THAT moment the skies went from raining uncomfortably to torrential downpour of Biblical proportion. So, we’re running that last block to the truck, the wind and rain are coming down on us ridiculously hard and my umbrella has turned inside out from the force of the wind…then it slipped out of my hand…it flew down the street and I stood there for a moment trying to figure out why I was even considering chasing it….then I looked over and saw that there was a van full of dry sheriffs…laughing at me. It went downhill from there.

I’m going to leave it at this. The next 45 minutes involved a smack-down from Mother Nature, a blistering lesson in traffic control, a cell phone dying a slow painful death and realizing that there is a point where you WILL stop your car in the middle of traffic, in the pouring rain and YELL at a cop.

And apparently be so scary that the cop steps back from you and does his best to accommodate YOUR level of crazy, which includes the handing over of his personal cell phone.

One ironic highlight of the day was realizing that I will make my immune suppressed child wash her hands with antibacterial wash if someone sneezes within 10 feet of her, but I will pick beads up off the GROUND and put them around her head.

As I finished up this post I got a call that yet another child earned his angel’s wings today.

Getting caught in the rain and lost downtown are nothing…they are nothing.

f.r.o.G…fully relying on God
–Anissa

The reasons that today was a good day. I can’t complain.

Now showing “Rachael, Queen of the Parade”

Peyton did say to me “I have hair now, i don’t have to wear these anymore!”

Everyone last night at the Children’s Cancer Center got to experience firsthand how well my kid can scream. Not Rachael this time, Peyton.

Ahhh, I cringe to even tell what happened to the poor girl.

It started at school. I got a call from her teacher that Peyton was complaining that it hurt when she went potty. This is not out of the ordinary, in fact she does this a lot. Her urine is apparently very acidic from all the meds and it has a tendency to irritate the surrounding skin so that it burns when she has to go. Sad to say, but burning when she pees is not a big issue for Peyton. I explained that to the teacher, and I told them that if she continued to have problems to call me and I would come get her immediately so I could see how bad it was.

No calls, she was happy when I picked her up from school. All is well.

We had family support group tonight at the Center and we were well into dinner when Peyton’s first catastrophe of the night happened. She peed all over herself, the floor, her favorite dress up costume…just a mess. But not a huge ordeal, easily remedied.

However, that’s when she started to complain again that her girly bits all hurt. She can be a bit melodramatic when she has an audience and it wasn’t until she started to complain loudly that I decided to act on it. I took her to the bathroom and checked it all out.

That’s when the screaming began. My baby girl’s skin was so irritated around her girly bits that when I checked to see, the skin actually cracked and she started bleeding all over. It was sort of like she had a mini episiotomy right there. Oh I felt so bad for her, she was just shrieking in pain. I had to wrestle her down to the table, wrench her little legs apart so that I could put medicine on it and she’s screaming the whole time and I’m so glad that Kay was there to help me because I can’t imagine what others thought was going on in that bathroom. Especially when Rachael came out and announced that “Peyton’s crying because her butt is bleeding”. She’s like tabloid news, so close yet so far away.

She did finally get settled down, the medicated cream relieved the pain enough that she was able to go back out and enjoy the rest of the night. This morning she was much improved but still sore so I kept her home from school to give her a little more healing time. I think that the newness of being at school and going potty by herself isn’t helping the situation because she’s not wiping as well as she should.

So, let’s just chalk this whole blog up to the “Oh I can’t believe you actually shared all that with the world, mom” section.

Pray for girly bits to heal!

f.r.o.G…fully relying on God
-Anissa

Peyton has taught Rachael the true meaning of passive-aggressive behavior. This morning during the “Would you please hurry up and brush your teeth, get on your shoes, make yourself look human before I unleash you on the world” phase of school prep, Rachael come tearing into my bedroom.

“Peyton hit me!”

“Ok, did she….”

“And then she hugged me!”

“Really? Why?”

“I don’t know, I’m so confused.”

“I can understand that.”

“THEN she told me that next week she’s not going to be my sister.”

“Why?”

“I don’t know, she’s so strange and MEAN.”

And this is all before 7:30 in the morning. I haven’t had any coffee yet. I haven’t brushed my teeth. Can you all please hold off on your dysfunction for another 15 minutes?

And I guess I need to explain my sister’s cryptic comment about the screaming and the mouse, because it just makes my family sound bizarre.

Back when my parents sold us to the carnival as side show freaks…

That so SHOULD be the beginning of the story, but so sadly, it’s not.

Where I grew up in Indiana was pretty much corn fields surrounded by cornfields buffered by the occasional soybean field, then more cornfields. We lived in a big old farmhouse…however, my father was an accountant so I could never figure out why we had a barn. This big farmhouse out in the country had a mouse problem, I guess just part of living in the country with an old house. They freaked me out! My sister as well…and because she brought this story up about me, I’m going to share one about her too!

There was just one day when my sister and brother and I were in the living room of the house and a tiny mouse scampered across the hard wood floors. I unleashed a scream so loud, so piercing, and so long that the mouse stopped.

It just stopped.

In the middle of the room, with it’s little legs just paralyzed.

We all starred at it and it never moved again. I think I gave it a stroke or a heart attack. The mouse just sat there, completely frozen, long enough for my brother to go into the kitchen, get a jar and a paper plate….he put the jar over the mouse, slid the plate under it and…still with the not-moving mouse, took it outside to the trash.

I killed a mouse with nothing but the sheer volume of my scream. I try to use my powers for good.

I have apparently passed this crazy inherent trait onto Rachael because people at the school were convinced that she’d broken all her fingers, that her hand had been crushed, it was a debilitating incident. When, in fact, they’re perfectly fine and she’s even lost the chance to milk it for more sympathy.

I’m going to go ahead and apologize for this next part beforehand. What you are about to read in the next few paragraphs, remember, I was about 8. I will probably get a call from my mom telling me that I’m grounded until my 40th birthday.

As for the story I’d like to share about my sister Angela…there was one night when I woke up to the my sister flipping out….I mean “call the white jacket men” kind of flip out. Apparently a mouse had run up onto her bed in the night and woke her up when it RAN across her chest!

I’m going to confess something here because she lives very far away from me and I can hide faster than she can drive here.

I knew there was a hold in the wall in my sister’s room behind her bed. I knew it was there because I’d snuck in and picked at it until it was the size of my fist. Again, with the knowing that it’s a farmhouse out in the country. My sister and I, who I love dearly and hope that she still loves me after she reads this post, were not terribly close as kids. She was 5 years older, I was a complete pest and we often butted heads.

So, in retaliation for some issue that I can’t even remember, I began leaving food in the hole behind her bed.

Every day.

Morning and night.

When my sister came out in a dead panic over the mouse in her bed, I almost peed the bed laughing.

I’m very ashamed now. I do apologize for it to my sister, but at the time it was the best thing I’d ever seen! It was possibly the highlight of my childhood at that moment.

My sister Angela and me in sweeter days.

Ahhh, but God has a good sense of humor.

I got the children my mother always prayed I’d have.

f.r.o.G…fully relying on God
–Anissa

**I had to include the top picture, that’s me after I first came to the states from Korea. Notice the hairdo?? I was three, so Peyton and I share that ‘do at almost the same age! But she wears it a lot better than me.

Please try to come!

Benefit Dinner and Concert

Honoring Mathew Gliddon & Family

Mathew is a 5 year old Leukemia patient. Karen (his Mom) is an instructor for Music with Mar. , she has been the instructor at FreshStart on Fridays for the last year. All proceeds of this evening will go to his family to help with medical expenses. Karen and her husband Mat also have a 2 year old son Andrew. Each week here at FreshStart Karen has brought many smiles to the faces of the lives she touches, both toddlers and Moms.

Where: FreshStart Church
13810 Wright Circle, Tampa

When: Friday, January 18th 6:00 pm

Dinner and a concert featuring Music with Mar. and a silent auction.

Why: To honor Mathew and his family

Contact Charlene@freshstartchurch.com or 727-376-1114 if you have any questions.
Tickets

8.00/person or 23.00 /family for dinner/concert

4.50/person or 15.00/family for concert only @ 7:15 pm