Hope4Peyton

It’s 1:55 A.M. I wish I were asleep. But I also wish for world peace and that cheesecake didn’t cause cellulite, so I guess it’s just up there with things that are not to be. I got the never-so-gentle knee to the kidney/slap to the arm combo that always inspires an instant wake-up. Followed by those precious words….

“I’m hungry.”

“Of course you are. Can you wait til the sun comes up or do you need to eat now?”

“Right now.”

“Right.”

“I want some steak.

“Not going to happen, what else sounds good?”

“Fruit loops.”

“You guys ate them all, we’re out.”

“Well, what do we have?”

Oh, the dreaded question!!! It equates to “How are you going to fail me as a mother by not having the food that will ease this beast in my belly?”

“There are eggs, I can make you a hot dog, we have strawberries, grapes, apples…”

“Apples, I want apples.”

Sweet! I have apples!

Then I get to the fridge, I open the crisper drawer and can’t see any red. There’s NO RED!!!! Oh, ok, there, under the bag of grapes. There’s an apple. A lone red apple, shiny and bruise-free…my only salvation from having to grovel back to Peyton with an alternative food source and possibly causing her eardrums to spontaneously explode.

I cut up the apple, put it down in front of her and start to go back to the kitchen to turn off the light.

“Where are you going!!?”

“To the kitchen.”

“Oh. Don’t leave me, I think I’m still going to be hungry when this apple is all gone.”

“I wouldn’t dream of it, master.”

“I’m not MASTER! I’m Peyton!”

“Sorry it’s late, some times I can’t tell the difference.”

f.r.o.G.
–Anissa

ps….There is no chocolate goodness or sugary explosion for the morning. There are pretty baskets, full of fake plastic grass. But OUR Easter Bunny? She’s seen these kids rake in more candy than any three kids have the right to possess at any one given point in time. So NO MORE! MY Easter Bunny is really lazy. She put dollar bills in the eggs because she didn’t want to have to go out in the rain to get candy that they weren’t going to eat anyway.

I hope the Easter Bunny gets a nap today.

I suppose with the earlier emotional trauma and craziness, there could be concern that I was finally driven over the edge.

1. I did get my vehicle back. It runs. I’m keeping it for now. That’s all I got to say about that.

2. Peyton is improving, starting to feel better from chemo and spinal tap, but amping up on the steroids.

3. My lack of posting is because we had friends arrive in town, invade the house and just bring us some great fun and entertainment. SO we’ve just been letting the kids run wild, having a great time staying up too late and playing UNO when we’re too tired to see the cards anymore. It’s awesome!

So, I’ll post when the weekend is over and we have seen the last of the Garcias and the Easter Bunny.

f.r.o.G..fully relying on God
–Anissa

I kid you not, Peter sent me this picture with the phrase “what if we could talk them down 50,000$?”

Well, honey, we’d have the nicest meth lab on the block!

This is why he needs to stop watching those Home and Garden shows where they take 2000$ and build a 5000 sq foot addition onto the house!

Now, I found this one….all we have to do is sell the children on a Thai black market and put Peter’s kidneys up on Ebay and we’ll have enough for a down payment on that patch of shrub next to the right of the curve of the driveway.

You looked for the shrub didn’t you.

-A

Really, I had thought that the end of yesterday’s post would be the end of the trauma.

Life loves to prove me wrong!

After Kim showed up with bags full of Red Lobster goodness I got Peyton all smiley with the song and dance Broadway versions of “Guess what’s for dinner!!!!!!!”

I open the bag, and can you just take one stab in the dark whose dinner is the one meal they forgot to include? Now, God looked out for me because there was a small side amount of fettuccini with my dinner that I was able to quickly pass off as Peyton’s dinner and she never knew the difference, on top of which, her stomach was completely out of whack and she only ate about 8 bites anyway. But it was the point.

I did have the joy and pleasure of calling Red Lobster and letting them know how unsatisfied I was with the service I’d received! I mean, I knew there was a chance that I was in for trouble because the young man who took my order got my PHONE NUMBER wrong twice and had to be corrected several times throughout the order placing process. I made him re-read me the complete order THREE times before I’d ok that he had it!! But somewhere between his pad of paper and that computer monitor he brain-farted and he picked the wrong mama to food-shortage.

I called back to the restaurant. There was a pause just after he asked if he could help me, as I took a deep, angry and tirade-preparing breath, in which his whole demeanor changed. I think he could actually hear the ANGRY in the way the air vibrated in my lungs and he was happy to get his manager for me. I told the manager every rich vivid detail of my disappointment in them as a restaurant, in them as a company and personally in his employee as a human being. I was just awful. I explain how there was no mistaking my order, I had gone online, I had prepared every aspect of my order so that I could give it with all sides and extras and even then the order-taker could not get it right. I told him that when you order to-go it because you obviously have an issue that keeps you from being physically at the restaurant and if I had the time to go back and get my missing food, we’d have been eating there in the first place! I told him about Peyton’s terrible day, about her desire only for Red Lobster and how THEY LET HER DOWN!

Yes, how is that for a guilt trip?

When I get my truck returned I get to go back and pick up a nice gift certificate to make up for my inconvenience and probably in hopes that I will find a different Red Lobster to visit.

I would love to tell you that was it.

There was an insurance envelope telling me that we’d been denied coverage with Peter’s new company until December. They can’t do it, we covered all that before we took the job. BUT that did not stop my brain from curdling just a little bit around the edges.

Then there was a whole movie issues I’m not even going to begin to get into to. Just let me tell you right now, don’t rent foreign French films….they are not cool, they are not in some way more culturally interesting….they are just disturbing.

But I got a slew of phone calls, emails and comments last night that soothed my soul, I know a lot of prayers must have been said to help ease me off the ledge because when I hit the pillow last night and looked over at the two girls arm wrestling for pillow space I was just filled with peace and love and smiled. Then promptly passed out and left the day behind.

Today I hit the floor running. Peyton is home as she is really sore and stiff this morning, she isn’t normally so I’m hoping it’ll wear off as she gets loosened up and moves around. She is sort of grumpy and tired and I want to make sure she eats well today…she started her steroids last night, so it really shouldn’t be an issue soon.

Thank you, God, for holding me together when all my pieces feel about to come unglued. Thank you to all the awesome friends who were my angels last night to calm me down and bring me some clarity.

f.r.o.G.
—Anissa

I am just having a bit of a day and therefore this post is really going to vent….it’s going to blow steam like a tea kettle!

Peyton had her spinal tap with chemo this morning and we bopped in fairly happily. For whatever reason she was actually happier to be going in for a “back pokey” than to be going to school, so I guess that says something about that. I know she likes school, I know she has a great time, but she was totally thrilled to be getting a needle in her spine s she could skip class! Something wrong there.

In preparation for the LP, I spent a full night tossing and turning, completely unable to sleep and having some wicked bad dreams when I finally did. I guess in the recent barrage of bad news that we’ve been under and the seemingly constant stress of fear and anxiety, my mind went to work last night with all the “what if’s”. I woke up with nothing but the idea of Peyton’s counts coming back showing relapse, her spinal fluid coming back suspect, just any number of things that could have gone wrong today.

Instead, her counts came back fine, in the same stable range they’ve remained for the past months. Not a drop or a dip to be noticed. Besides achy legs to peck away at my peace of mind, which is probably from her more active lifestyle of being a preschooler now and much more on the move, there is really nothing that should leave me to think anything about Peyton is at risk. It’s just out and out fear that I can’t do anything about. I pray, I give it up to God the best I can, but that doesn’t make it entirely go away.

She was pretty decent all things considered, but we got to the clinic at 8:45 and we weren’t able to start her procedure until almost 11:00 which meant we weren’t able to give her anything to eat or drink until after 11:15. She was NOT a happy camper about that. Her magic cream, which normally works like a charm, did not so much do it’s charm-working magic today. She loved the drugs that she happily and repeatedly announced made her “feel funny”, but when the needle started to go in she went into Tazmanian Devil mode and all arms and legs shot out. They have to remains still and curled in a ball to keep the spine in the proper position to give access to the spinal fluids so this reaction wasn’t a good one. She also started crying and screaming and although it was over quickly and the nurse/doc team did the best they could, this time she really felt everything and I hate that.

I had a long talk with Kyleen, our child life specialist about dealing with all the emotional upheaval with the kids. Answering all the questions the kid have about death, why, how do we know it won’t be Peyton, how do we talk to them when one of the kids take a turn for the worse and we have to prepare them for the loss of another friend? Is there a better way to help them accept this reality? How can I help them cope when I’m so obviously having a hard time coping myself?

Yesterday a group of psychologists came in and talked to the moms at Little Tales and it was one of those things that you didn’t realize how much you needed it until after it was over and I thought “WOW, maybe I do need a therapist!” Although, I don’t know that they did so much as just getting the ball bouncing between the moms and getting us talking to each other that helped. Maybe that was their gift to us, letting us help each other. Because a lot of what the other moms said hit me and resonated with me, and I GOT it and understood it so clearly.

So, I guess in the rambling from subject to subject today, I had a talk with the doctor today about some of my fears. I asked her about Minimal Residual Disease, which is a testing for a deeper sample of cells to count at a larger scope whether there is still Leukemia present. She explained some of that to me, but I think she looked at me waiting for me to ask the question and I couldn’t do it. I did ask if Peyton had been tested for MRD, which not all kids are, and she has been. But I couldn’t bring myself to ask if she still had residual disease. I don’t know if I want to know. She didn’t offer up the answer and I didn’t ask. I totally chickened out.

I told her about my anxiety and my fear that with Peyton’s higher risk that she’s the next to relapse and the doctor didn’t try to pooh pooh my fears away as unnecessary. I just poured it out there about the relapses, the second relapses, the relapses after bone marrow transplant, the relapses during treatment, the illnesses after treatment was all over, just the constant uncertainty of it all. She didn’t make me feel stupid for worrying, but she just acknowledged that it was normal and it was part of the process and with Peyton’s end of treatment coming up it was likely to get worse before getting better. Which I don’t know if that’s a good thing or not, but I know that it’s true.

I finally got myself pulled back together, I actually felt better after having let it all out and gotten it out of my system. I guess it’s cheaper to tell the oncologist who is already getting paid that finding a therapist. Peyton was recovering well from her LP with a bag of Doritos and a drink and we were both looking forward to some lunch, as I do not eat or drink anything any time she has to fast for procedures…it just seems cruel.

We get out of the clinic. We get about 2 miles down the road and the truck goes down for the count. Red blinking lights! Gauges waving madly! It was like pinball without all the fun music and balls! I pulled into a gas station and just put my head on the steering wheel for a minute, trying not to think about the HUGE repair bill we’d just paid out to keep this gas-guzzling monstrosity on the road. And now something is wrong. And not wrong like I-can-make-it-home-and-deal-with-it-after-i-feed-the-starved-beast. More like hmmm-wonder-what-kind-of-nourishing-goodness-can-be-found-at-this-Chevron-while-waiting-on-a-tow-truck??

So, picture it! I have my neighbor…my WONDERFUL neighbor Greg come up to get us at the gas station…I have AAA send out a tow truck….I have my freshly LP’d and chemo’d daughter munching on Cheetos with milk because everything else in the store not vacuum sealed gave me the wilies…and I am about to lose my mind.

Because Greg comes all the way up to get us and he has to stay there and miss his own doctor’s appointment AND because we have to wait on the tow truck anyway because they won’t tow it unless I’m there. We wait, Peyton is ready to gnaw the leather off the steering wheel. The tow truck finally arrives and the guy has decided he’s taking my vehicle to some auto shop in north Tampa! No no no, I live in Brandon, you’re taking it to Brandon. He looks at me as if I’m speaking Latin. BRANDON! You will drive that big black truck to BRANDON. I go to give him directions to the shop, he tells me, “I don’t need the address, I’ll just follow you.” Ok, whatever! We wait, while he gets the whole hookup thing done. Most exciting part of the past hour.

Now get this! We get to Brandon, we get to the body shop. Our AAA plan says that we’re covered for 10 miles of towing and then it’s 4$ a mile. The trip was 10.5 miles. He charges me 4$ !!!! Yes he does! He does the whole “we round up to a whole mile”, I wanted to say “well, I round down, #$#hole.” I wanted to give him 2.00$ for the ½ mile I owed him because I could have had him stop at the 10 mile marker and pushed the truck the last half mile! I probably could have driven it the last ½ mile because it had had time to cool down! Greg’s fantastic idea was to have had the tow driver stop at 9 miles and then call AAA again and send out another driver so we’re good for another 10 miles, right??

Four dollars nearly drove me over the edge. I was all outrage and injustice, I’m talking like superhero proportions! I was prepared to tie a huge T to my shirt and become Tow-Girl who fights for the rights of stranded travelers everywhere.

Then it occurred to me if I got into a screaming fit with this guy over 4$ and did something stupid like really take out all my frustrations and irritations on a guy who’s just doing his job…or stupid like rip off his arms and beat him to death with his own hands….there’s a sheriff in the car with my kid in it and he’ll probably have to testify AGAINST me and that would suck.

Right now Nathaniel and Rachael have just walked in the door from school thanks to a friend dropping them off. Another friend is picking up some Red Lobster for us….the only thing Peyton wanted to eat post-treatment and she hasn’t had anything to eat all day because she’s been soundly asleep since the car started moving at 2…and I want something in her day to be GOOD. I’m going to go let the kids dribble their good moods all over me and hopefully rub their happy on me.

f.r.o.G.
–Anissa