Hope4Peyton

This morning I suffered through yet another brain fart…however, it wasn’t Nathaniel’s this time….oh, no….it was ALL me.

I have made sure to have plenty of chapstick and lip balm for Peyton, her lips are worse right now but she’s dealing with it pretty well. After we dropped the kids off at school I came back and opened a fresh chapstick and told Peyton that after she did some thing that I wanted her to do I would put it on her lips.

I had it in my hand. I threw the box away. I held it in my hand and then I sat it down to answer an email. Peyton walked up ready to be balmed and it was gone. I don’t mean like, randomly misplaced gone…but gone as if it never existed. I swear I didn’t get up, I didn’t walk around, I never moved. I checked the trash, I moved everything on my desk, I looked under it, over it, around it….it is gone.

Peyton’s standing there, watching me try to figure out where on earth it could have gone, and she hears me mumbling “I’m losing my mind.”

“Mommy, did you lose the chapstick?”

“Um…yes, but it has to be here somewhere!”

“And you lost your mind, that makes TWO things you lost today.”

Thank you for keeping tabs on that, I would hate to think that I would FORGET that I lost my mind.

After I accepted that the chapstick would appear again someday, just pop up in some unthinkable way to taunt me with it’s mere existence, we headed off to the golf tournament for the Giving Hope Through Faith foundation. We saw many friends and thinking back to last year’s tournament, she has come a long way. For some of the golfers who were there last year and remembered her, they were so sweet to comment on how much bigger she was, how beautiful her hair was coming back. She didn’t really care, she just wanted to run and play with Lexi Tucker.

There was a touching moment just before they started the golfing that Sherry remembered and honored each child that the foundation had helped that had been lost over the year. There were 5 balloons to represent each of those children, plus ones representing Zach Tucker, Paige Wirth, Jacob Duckworth, and Taylor Arrington. Peyton took them one by one and let them go, floating up and away from us. I cried, I couldn’t help it, it broke my heart to hear all the names of friends, to think of their losses and what an emptier place this world will be without them.

Mathew Gliddon passed on Wednesday, at home and in the arms of the parents he loved so dearly. Please pray for his family, the friends who love them all and for the Lord to just continue providing comfort, strength and purpose. Mat and Karen are just amazing people, there are so many stories, shared from family to family about some way that Mat and Karen reached out, touched them and had a powerful impact on their lives. They are the most loving parents, they are tremendous friends and I am full of sorrow to know that Mathew is gone from their home, but never from their hearts.

There will be many hands making ribbons that will be worn at the funeral service. Tuesday we will have a chance to say goodbye to Mathew and celebrate the life he had. For me, it feels raw because it seems just days ago we were making ribbons for Delaney, Hannah, and now another sweet child is gone.

I had really considered not telling my kids what was going on, not telling them about Mathew’s death. Rachael is much better, but will still ask about Delaney occasionally and I know her passing is still on Rachael’s heart. I really couldn’t think of a gentle way to tell them they yet another friend had passed. Yet, I know the kids talk and I know that I wanted their first knowledge to come from me. I wanted to be able to answer any questions and give it to them in as positive light as I could.

A hard job for someone who has no real answers and struggles to find the positive herself.

We ate dinner tonight and then I brought it up. I explained how long Mathew had been fighting his cancer, how tired his body was and how Jesus had to heal Mathew by taking him to Heaven. I tried to, as simply as possible, make them understand that many people around them right now would be sad about Mathew not being here on earth for us to play with and talk to, but we have to remember that we will all be together with God one day.

They were quiet and didn’t ask me many questions, but they did make their comments that Mathew would have trains in Heaven, he wouldn’t have cancer there, that that he would have a chance to see the many children that have gone to Heaven before us. It seemed to go really well, we occupied ourselves by riding the merry-go-round at the mall and window shopping.

But in the car on the way home, Nathaniel was really quiet and I could hear his gears turning. I asked him if he was ok and he finally looked up at me with big tears in his eyes and asked if Peyton had ever asked Jesus into her heart. Oh, I could see the pain and fear in his eyes, all those worries and anxieties.

I told him that when we got home and the girls were in bed, we’d sit down and talk about it and he could ask me all his questions and I would do my best to answer them. It was with a very heavy heart that I got the girls into bed, just knowing where his mind was. He and I curled up on the couch under his favorite wooly blanket and just talked.

He cried a lot, we hugged a lot. His greatest fear was that if something happened to Peyton, she wouldn’t go to Heaven because she hadn’t asked Jesus into her heart. I explained the only way I could about the innocence of a child and that God knows their heart in a very special way and until their old enough to understand, he accepts them into Heaven whether they’ve said the words or not.

We talked about cancer, relapses, about his friend’s mom that passed so quickly from Leukemia and the difference between adults and children with the disease. I guess I didn’t say it quite right because his reaction was that I was freaking him out that I was going to get it. I just told him that cancer isn’t like a cold or the flu, and that because Peyton got it didn’t mean I would, his dad would, he or Rachael would.

We just sat there for a long time, him voicing his fears and me trying hard to reassure him and make him understand things that we as adults have trouble grasping. Monday at the ribbon-making time, there will be special people there who will be able to reach out to the kids and hopefully let them all know that they are supported too, that the lines of communications are always open, no matter how young. Maybe especially they young.

Please keep us all in prayers.

f.r.o.G…fully relying on God
–Anissa

When I was in high school I had to work on this huge semester long term paper. Every fiber of my being was concentrated on that paper. The week before it was due, one of my classmates dropped a Big Gulp on the folder that held ALL of my research and what was done of my paper. The look she gave me said “I’m sorry, I’m so sorry, PLEASE DON’T HURT ME!”

I was blow-drying my hair this morning when Nathaniel popped around the corner with that exact same expression on his face. I didn’t even want to think about what he was going to tell me because he obviously realized it was bad and that’s pretty serious.

“What?”

“I have a report due tomorrow.”

“Tomorrow.”

“Yes.”

“Did Mrs. McDaniels just call you and tell you about it right now?”

“No.”

“How long have you known this report was due?”

“Ummm….maybe 3 weeks…before spring break…so yeah, 2 or 3 weeks.”

“And you’re just NOW telling me?” This is when my voice started to get a little higher.

“Yeah.”

“Do you have the sheet on what you’re supposed to do?”

“Yes. I need posterboard.”

“Son, why wouldn’t you tell me about this being due? We could have done it over spring break. You need to give me these papers!”

“But it’s not due until tomorrow.”

“Nathaniel, you need to leave this room right this second. You need to get out of here. Just GO!”

I still had the blow dryer in my hand and seriously considered throwing at him for just a second, but I refrained.

I could feel a ticking behind my eyes, as though my brain was counting down to a complete explosion. Thankfully, by the time I finished getting ready, I was calmed down and able to cope with, if not understand, my 10 year old’s brain fart.

Peyton’s peripheral blood smear, which is where they take a look at her blood and see if anything is apparently wrong, came back nice and clear. The bone marrow aspirate is more in-depth, but this gives them a general idea if anything was abnormal. So, YEAHHH!!!

However, her liver enzyme level came back elevated. Not that it’s a good thing by any means, but our friend Zack had just been through this issue and his mom Tina had shared with me all the information. In an essence, the liver is the body’s garbage disposal and everything goes through it and when it gets backed up or overloaded from something it has to work extra hard to process….say, like chemo…it can cause the liver enzymes to be elevated. Liver enzymes help speed up all the chemical reactions that go on in the liver and help in removing toxins. So basically, her liver has been working over time to cope with all the chemo and I guess it’s just tired. It’s nothing terribly serious at this point, it can be, but it’s a pretty normal issue for these kids. They haven’t said to hold her chemo, which is sometimes an option to give the liver a break, so I don’t think it’s elevated to a dangerous level. When we go back to clinic in two weeks we’ll be accessing her port for more blood instead of just her normal fingerpoke.

Please keep the [url=http://www.caringbridge.org/visit/mathewjgliddon]Gliddon family[/url] in prayers for comfort, strength and peace.

f.r.o.G….fully relying on God
–Anissa

Here's an image that kinda looks a bit more along the lines of what she was mentioning.

It's our wedding photo.

Pete

I use Gmail and they have their Google-Ads. They are supposed to be “topic sensitive” and put up ads that relate to whatever you are searching for or looking at.

This was my latest ad:

Asian Nose Surgery – www.AsianCosmeticSurgery.com – Charles S. Lee, MD Board Certified Surgeon. Beverly Hills 90210

I don’t think I even what to know what that is! I didn’t know we had our own surgery! And not entirely sure how I got THAT ad.

–Anissa

Ok, just for my own sanity I have to make this perfectly clear. While all Asian people do share certain identifying features (i.e. some variation of the slanted eye, traditionally dark hair and dark eyes, a need to do laundry and cook noodles, whatever!), we really do not all look alike. However, after the third person TODAY made this remark, I really had to make certain that everyone knows….

I know I bear a resemblance to Margaret Cho.

In all honesty, if you’ve seen her lately, you can see what I’d look like 40 pounds lighter and with a stylist. But I know this! Way back when, Margaret Cho did a show at one of the colleges in Daytona, I got freaking mobbed at the mall. We went to see her perform in Orlando one time and people asked me for her autograph in the bathroom. Peter spent the entire night staring at the big screen at her and then looking over at me until I snapped, “What! Just say it!”

“You DO look like Margaret Cho.”

And now we move on.

Peyton had her clinic visit today. This should have been a pretty quick trip in as all she was getting was a push of Vincristine and a bagful of meds for the rest of the month….which she takes DAILY, PETER! Her port decided not to worth, though, and it required some port-style Draino solution to clear out anything blocking the path. Our nurse Cindy comes in the room, injects the stuff and runs out saying, “It has to sit for 30 minutes!”

She is evil. She did that because she knows that after clinic we head to Little Tales and she knew that this would make it so we didn’t have time. Evil has a name, it is Cindy. So, we had to wait around for everything to start working properly and instead of taking this time to gently reflect on the meaningful purpose of our lives, Peyton decided to pitch a verbal assault.

“You KNOW, Mommy, we should have gone to Little Tales first and THEN came to the clinic.”

“Next time, can Cindy just make my port work so we can leave?”

“Why can’t we just leave and come back when my port works?”

“I’m getting mad. Don’t make me go there!”

Don’t make me go there. Really? Because I LIVE there, little girl! I bought a house, I have a newspaper subscription and a Bridge club there. Welcome to THERE.

At about 11:00 the port finally started working, and by the time we got counts, chemo and all her prescriptions filled, we were walking out the door at 11:45.

Little Tales starts at 10 and ends at 12-ish.

Guess where we had to go? I took her down there with the express knowledge that we’d only have a few minutes to play, that everyone would be ready to leave as soon as we arrived and that there could be no more complaining. All was great, she got to see Dana and Kay and Adelaine….that was all she needed, a little love-fix. She didn’t even throw a hissy or anything when we had to go 30 minutes later.

As far as her counts went, all the numbers came back in the normal range. After explaining about her recent issues, Dr. Kerr , who knows my current level of crazy, decided to accommodate that craziness. I know that it’s probably just from an accumulative effect of almost 2 years of chemo added to the fact that her body has been through a lot over the past few years. She clarified that Peyton’s pain wasn’t coming from traditional sites that would alarm then for joint deterioration. She said that they would do a smear of her blood and check it out there, and then she offered that we could schedule to do a bone marrow aspiration at her next spinal tap. It threw me off, but then it didn’t. I was expecting her to tell me she was fine and it was all ok, but I know that this is all about talking in your soft voice around the crazy mom.

What we decided was that if:

A. Her issues continue and her counts stay good, we’ll do a bone marrow at the next LP
B. Her issues escalate and her counts start dropping, we’ll do a bone marrow sooner
C. Her issues subside and everything stays steady, we’ll nix the bone marrow

When it comes to covering all the bases, Dr K is a one-woman Yankees team. I agreed to all of the above, with the understanding that there is a big difference between “concern” and “alarm”. They are concerned about her issues, but with her counts staying steadily in a normal range, they aren’t alarmed. If there is a reason to GET alarmed, we will jump on it.

Do I think she’s relapsing? No
Do I pray that she’s not? Yes
Do I watch her like a hawk for every twitch and jerk? Yes
Am I probably making it into a bigger deal that it needs to be? Yes
Can I do anything about that? Yeah, not so much

Tonight she took her 6MP, 6 pills of Methotrexate, and her steroid. I’m anticipating a follow-up week similar to last month’s, which was rough on her.

Her newest glitch is that her lips have been chapped for months. I had to take her some lip balm to school because apparently she’ll drive her teacher insane with the repeated phrase “My lips hurt”. But in the last couple of days she went from having red, dry lips to having lips that were SO red people kept asking if she had on lipstick. They were swollen and very irritated. After her nap, she woke up and told me her lips hurt. I went to put some chapstick on her and there are a bunch of little blisters on her bottom lip now. I hadn’t realized that it was more than chapped lips, so when I asked her if her mouth hurt on the inside too, she said it did. She’ll complain because the pillow is too hot or because Rachael’s breathing her air, but she says NOTHING about the fact that she has open sores on the inside of her cheek. Go figure.

We haven’t had to deal with mouth sores in over a year, so I have to call in the morning and have them send out a prescription for “magic mouth rinse” and hope that makes it feel better. I’m also thinking that this might be the biggest issue behind her saying that her food is “Yuck”. I’m not sure how long the sores have been there and since she has no concept of time it’s hard to get a competent answer out of her.

Oh, I have to share that my friend Natalie and I were talking about the phenomenon that we are losing our minds. We put things down and cant’ find them 2 minutes later, we can’t remember what we walked into a room for and if we don’t write it down it might as well not exist. We compared stories tonight and she’s been on the hunt for her checkbook for over a week now, whereas I opened the freezer and found a softball….and I had to stand there a minute and really think about whether I put it there, or if it was one of the kids. Because, unfortunately, it’s not completely out of the realm of possibility that I was the one who put it there. I am forever walking around with something in my hand, get sidetracked and out it down and then spend the next few hours looking for the initial item. Put a softball in the freezer so I can reach in and grab some chicken? Totally doable.

I’m starting to think that perhaps I’ve inhaled a few too much chemo dust and it’s affecting me in new and strange ways.

f.r.o.G….fully relying on God
–Anissa