Hope4Peyton

If you’re familiar with the phrase “took the wind out of my sails”, then you’ll understand why I haven’t really felt like posting this week. I’ve been feeling that life has not only left my sails windless, but has ripped them off the masts, cut them into tiny bite size pieces, poured gas on them and set them aflame.

But I’ve patched a sheet together and the boat’s moving in the right direction again.

The funk definitely hits, it strikes suddenly and it strikes hard. After a week of worry over Peyton’s less than great reaction to chemo and steroids, then the constant barrage of bad news coming in about the precious kids around us, it was just a week of emotional overload.

First, Peyton is MUCH improved. The steroids are long gone, she is back to a normal appetite, she is capable of the phrase “No, I’m not hungry right now” and she went into her classroom this morning, not only without a fight….but WITH a SMILE! It was wonderful to see. She was anxious to show her teacher the homework project she’d finished, a heart that she’d decorated for Valentine’s Day and was looking forward to a fun day of play.

I had the chance to go to the hospital for a visit with Mathew Gliddon’s family yesterday. To recap what this brave young man has been through, he’s 5 years old, initially diagnosed with a high risk ALL Leukemia, he relapsed around Thanksgiving and they were working hard to get him in remission so that he could be relocated to CHOP (Children’s Hospital of Philadelphia) for a bone marrow transplant for which, MIRACULOUSLY, his baby brother was a perfect match. We were all broken hearted when word came last Wednesday that he had suffered a second relapse, his marrow came back positive for leukemia cells again. Before a choice could be made for treatment options to restart the induction process, Mathew had a bleed in his brain on Monday. The counts that I talk about so frequently are monitored because the chemo isn’t selective about what it kills off, taking the good with the bad cells. For Mathew, too many good platelet cells were being destroyed in the process of killing off the leukemia, leaving the ventricle in his brain enlarged and weakened. Even with frequent and repeated transfusions, they just couldn’t handle the strain and his brain began to bleed. I guess the ONLY good thing about that is that they were already inpatient so they were able to get care immediately after they started noticing the signs of unresponsiveness.

He had to have a stint placed on the right side of his head to drain out the fluid and to relieve pressure, but it became blocked and they had to put in a second one as well. Suddenly the first one began working again and now both stints are working to drain out the fluid that had built up around his precious brain.

Mathew has been responsive to his parents, able to express his basic needs and to obey physical requests. He shows definite signs of improvement, although they are small and the healing process is slow, I know that we are all hopeful for his full recovery.

Mat and Karen remain AMAZING throughout their son’s struggle. Although you have to know the pain is tremendous, there has to be the desire to just curl up and let it all fade away, they remain strong and vigilant that his healing is happening. Plans for further chemo and the bone marrow transplant are all on hold as they wait out the immediate concerns with the brain bleed, they must first get over this hurdle before they move forward with any of that. But I pray faithfully that with our continued prayer and support and the strength of their love and faith that they will see him through whatever God has in store for them. Please take a moment and [url=http://www.caringbridge.org/visit/mathewjgliddon]go their website and leave them a few words of encouragement,[/url] it will only take a moment of your time and it will give them the knowledge that so many stand behind them during their hardest times.

So, in light of that, can I pick up my droopy butt and get motivated and stop wallowing in my personal pity party? I mean, seriously, all it takes is some perspective to really shake you up and make you say “Oh yeah, right, this is what’s important.” Last night, Peter called me and was upset because he’d had a bad day at work, some things had gone wrong, other things had gone not-right and he was just harassed by the end of the day what-could-I-have-done-better syndrome. Not that I’m not sympathetic to his need to vent and that I don’t care that he had a crappy day, but all I had to say to remind him that there are bigger things in the world than not getting right memo out or crashing a computer was “No one died today.”

Don’t take that to mean that I will accept that excuse from my children when one comes home…perhaps your oldest child….maybe your 4th grader…whose name starts with an N…and has F’s on his report because he failed to turn in homework that he completed! Did all the work, but didn’t turn it in, therefore he didn’t get any points. I’m not going to stand there and let him say ,“No one died because I didn’t turn in my homework, mom.” But I will try to remember that there are bigger issues in life than missed homework, that in lieu of getting worked up and angry because of this inconvenience, I can take a breath and try to teach the lesson there is to be learned from this mindnumbingly irritating incident.

My very wonderful and inspiring friend Joanne Lee has made a commitment that just blows me AWAY! Her daughter Samantha was diagnosed with Leukemia and I am so thrilled to tell you that she is coming up to her successful end of treatment this spring. We cannot ever use enough of this kind of good news. Samantha isn’t a child who has breezed through treatment She’s suffered through tremendous pain and trauma, she’s older than Peyton so her awareness of what she’s up against has always been a factor. But she’s a beautiful precocious, compassionate and loving girl and we have had the wonderful privilege of getting to know her over the past year and half and her family has been dear to my heart.

Before Sam was diagnosed she always twirled her hair to go to sleep, so when her hair came out, her mom would sleep with her so that Sam could hold onto HER hair. I lose my mind if Pete grazes me in the night with his callousy, cold feet , and she lets Sam hold her hair in what I’m sure is a deathgrip all night long…that is LOVE. So, when Joanne heard about an event called St. Baldrick’s, she jumped on board with both feet.

St. Baldrick’s is a charity that raises funds internationally for COG based research groups for childhood cancer. These are groups that are bringing the up and coming treatment options, who are working to bring the better, faster, treatments and are working to bring hope to the children who at this point, are facing a future without.

St. Baldrick’s holds events where people commit to shave their heads in honor of kids battling cancer, it might be a particular child or all the kids in general. And we have a function in St. Petersburg on March 22. I got the word that a group of gentlemen from Banker’s Insurance have made this their charity, they have banded together and committed to being shaved and are currently raising funds.

Joanne has decided that in honor of Samantha, she too is going to shave her head. I am awed at this decision. I would love to be able to get over my pride issues and do it as well, but I have trouble imagining myself moving into a new area and trying to make friends with the “Britney Spears” ‘do. I can’t see it going over well. People here know me and would understand, up there it would be an interesting time trying to adjust my kids into a new environment while I’m the CRAZY lady with the shaved head.

But it’s not about me, it’s about Joanne and her phenomenal choice. Her passion for pediatric cancer research, the love she has for her daughter, the wholehearted way she knows she’s going to raise awareness and make a difference for all our kids.

If you can spare a few dollars to donate for Joanne’s efforts, please do so!! I want to see her far surpass her set goal, I want this to be an experience of her lifetime for a good reason. I love you, Jo!!!

f.r.o.G…fully relying on God
—Anissa

I generally wake the kids with a minimum of sensitivity, a light thrown on and a quick “Get up, get up, get up” will do the trick. But this morning I felt compelled to jump right in bed with Rachael and snuggle down with my cuddle bunny. If you can get past the hellacious morning breath, she’s all warm and cozy and one of the sweetest ways to start the day. Since I’m the bearer of my own ferocious morning breath, we were both tucked in with a blanket between our mouths, grinning at each other.

“Hey, what do you say we just let you skip school today and we lay here all day and not do anything?”

“No!! I can’t do that? Then I won’t learn anything. I HAVE to go to school.” <–SO NOT MY CHILD.

“Well, maybe we should just quit school forever and then we’ll sleep in every day and not do anything ever again, then we can lay in bed forever!”

“Noooo! If I don’t go to school then I’ll be STUUUUPID, mom. I have to go to school. But, you could homeschool me, then we could sleep in every day.”

“I don’t think THAT will keep you from being stupid.”

“Well, then we should probably get out of bed, huh?”

“Yeah, probably.”

She’s already more motivated than me. I love that kid.

Peyton, however, put up a grand fight at school. She did great getting dressed, getting out the door, getting into the school….right up until about three steps from the door of her classroom. “Wait! Do you mean all this getting dressed and driving me to school with a backpack business was because you were planning to make me stay here?” She proceeded to crumble into the consistency of wet tissue paper and curl into a ball in my lap. She magically made her whole face turn magenta and made spots appear all over her forehead, but I managed to leave her there. Leave her there curled up under her table. Crying. UNDER her table. Yes, I left to immediately accept my award for parent of the year! I stood outside the building, where the teacher knew I would be standing for 10 minutes in anticipation of her spontaneously combusting after which I would be needed to return to scrape her charred remains off the ceiling.

Luckily, a classmate’s mom came out and let me know that she had calmed down, was no longer crying, had emerged from under the table and was begrudgingly putting together a puzzle. Not happy about it by any means, but had gotten past her “Girl, Interrupted” phase. She stayed until 2:45 when I got the call that she’d woken up from her nap crying and wanting me and I took off thrilled that she’d made it almost the entire day!

She’s doing much better than she was over the end of this past week. Thank you all for your powerful prayers. Her color looks better, she’s already feeling better from the steroids even though her appetite continues to amp up. She’s still tired and a little more emotional, but she no longer looks completely drained and wiped out. She is complaining tonight that her back and her legs are aching, so I gave her some pain meds and she’s all smiles after that kicked in and she had a nice warm bath. I did notice that she had a bunch of eye lashes come out this month, not so many that you’d notice from looking at her, but I kept noticing them on her face. I guess the body just handles the chemo meds differently from month to month, and sometimes the buildup all hits at once.

Please keep prayers going for the many children fighting this cancer battle, for the survivors who live to be the shining examples of hope, for the lost that inspire us to fight harder and harder for a cure. I ask for special prayer for Mathew Gliddon and his family as they face this next uncertain phase of treatment following his second relapse. I add the request for prayer for Emily Lester. She is a sweet 18-year-old young woman that we’ve had the pleasure of meeting that was diagnosed with ALL Leukemia at age 12. She completed treatment, but relapsed and received a bone marrow transplant at St. Jude’s in 2006. They found out this past weekend that Emily has relapsed a second time and she is being send to St. Jude’s again for treatment. So many need our prayers, it’s hard to single out just two, but please keep these two names, Emily and Mathew, in your conversation with God tonight.

f.r.o.G….fully relying on God
–Anissa

Don’t ask what happened to these pictures, the camera was on the wrong setting and everything came out a little hazy…just squint a little and turn your head a little to the left and they all look fabulous.

The classic toothless 6 year old picture, love it!

This is what happens when you get your hair cut by committee!

There is really no worse feeling than helplessness when you love someone and you are watching them struggle. It hurts to see them hurt, you feel their pain and it just wrenches you inside to know that there is nothing that you can do. So we do the little bits that we can. We try to boost their spirits, we visit, we love them, we let them know that they’re never alone in their battle.

The Gliddon family is precious to me. Their son Mathew is every child, he represents every child that is battling cancer and deserves a chance at life. His second relapse is so devastating, it puts him in such a dire situation and we pray fervently for God’s power to heal his body, to provide the miraculous cure he needs.

As a way to do something, to feel like I’m helping in some way, I’ve put some items up in the Pootique on CafePress.com. There are some shirts in adult and kids sizes and buttons that show support and encouragement for the Gliddons by proudly proclaiming their eloquent mantra “We are strong. We are brave. We can do anything.”

They live by these words and we believe they can. All profits from the sales of these items will be donated directly to the Gliddon family to be used for Mathew. If you’d like to help, this is a way. if you’d like to make a direct donation, please contact the Children’s Cancer Center and let them know you’d like to make a donation for Mathew Gliddon, you can also do it online through their website through paypal, just make sure that you specify his name in the “notes” part of the transaction.

f.r.o.G…fully relying on God
-Anissa

There is an inconsistency to Peyton’s reaction to treatment that makes it sort of exciting….not unlike being on the bomb squad I’m sure…blue wire or red wire this time??….red??…sure!…why not!….BOOOOMMMM!

On Tuesday she got her chemo via her port and she started her steroid round on Wednesday, they also upped the dosage of her 6MP chemotherapy to this radically confusing rotation. It’s now 1 ½ pills on MWF, 1 ¼ pills if the dog next door barks three times, it’s 1 1/8 of a pill if the mailman falls before he makes it 2/3 of the way up the sidewalk, it’s 1 1/16 of a pill if the moon is full and Saturn is rising….and just 1 pill every other day. It’s sort of like the nurses and doctors get together and have a meeting to make sure we’re still paying attention and decide to MIX it up to keep us on our toes.

The past couple of months we’ve been so lucky that Peyton has been doing remarkably well throughout her treatment, steroids have really been just a hungry time and nothing more and she’s felt so good. Unfortunately, no matter how good she might feel from one month to another, it is chemo, it is a nasty pool of crap and it does eventually catch up with her and this is her week for it to slap her across the face. Thursday she was grumpy and just out of sorts. Friday when I tried to drop her off to class she clung to my leg and started crying pathetically so I just took her back home with me, where she went immediately back to bed at 9:30 and slept until 1:00, not like her at all. Her color has been lousy, she’s been pale even though her counts were good and she has dark circles under her eyes.

She has the steroid funk pretty bad this month, terribly emotional and temperamental, just mopey and whiney. Every little issue becomes a FEMA level catastrophe of epic proportions….soon to be made into a Jerry Bruckheimer film starring Bruce Willis with a soundtrack by Aerosmith.

The only thing that has made her really happy this weekend has been that Pete made the drive down late Thursday night and surprised the kids by waking them in the night with kisses. Having daddy here hasn’t made it all right, but it has sure made it better. However, he will be leaving just as its all peaking, so we’ll see how that goes. I may be forced to hide her in the trunk and let him figure it out for himself around the FL/GA border.

Although we ask for your continued prayers for our sweet girl, we also ask for faithful prayers for our many friends waging much harder battles with their cancers and for the families who are now coping with how to live life without a precious child. God’s plans for us are so powerful and I truly believe that our job isn’t to always understand, but to just faithfully believe in it.

f.r.o.G…fully relying on God
–Anissa

Peyton has had a very rough day today. Her school called me early to pick her up as she’d had a crying fit and wasn’t feeling well. I picked her up and she fell immediately asleep and was grumpy and moody the rest of the night. She complained that her leg hurt and that her back was achy, and she was very emotional. She’d only had 1 dose of her steroids, so I’d say that wasn’t it, but some months she breezes through them and some months all I have to do is open the bottle in the house and she has a nervous breakdown. They did up her chemo dose yesterday, she is a growing girl, this is the second increase they’ve made. But I don’t think that it would’ve had a chance to have a real effect yet. I guess that occasionally I get used to her always being bouncy and positive and it’s easy to bypass the thought that she IS full of chemo, and she will feel those effects. By bedtime she was just miserable and exhausted, I guess if she’s not feeling better she’ll probably stay home from school tomorrow.

Sometimes for me, this cancer life is about perspective. A few aches and pains make me sad for Peyton because she shouldn’t have to deal with cancer in her life, but thankfully her treatment has remained successful and her cancer is in remission. In the face of those who’ve relapsed and especially those who’ve passed, we’ll take those discomforts and side effects because they are reaffirming that she is alive to have them.

We got the devastating word that our sweet friend Mathew Gliddon has had a second relapse. His remission did not last long enough for him to be eligible for his bone marrow transplant, so all plans are on hold until treatment options are set in place. This news is so awful and while, as his friends, we are heartbroken for him and his family, we can only begin to imagine the pain and sorrow they are experiencing. This second relapse leaves him with questionable amounts of treatment options and we ask everyone to pray that his body will respond to whatever chemotherapy treatments they are able to decide on for him. He has to attain remission and maintain it for 30 days before they will begin the bone marrow transplant process, so our prayers are greatly needed. Please help us pray his family through this emotional time.

f.r.o.G…fully relying on God
–Anissa

This article was done in the fall. I happened to be talking to someone at Cracker Barrel when a woman approached me, having overheard me talking. She ended up being a reporter for a paper called the Asian American Times in Arizona, and this is the article she wrote up of Peyton. It’s very sweet and done nicely. She does misname the hospital, but everything else is good.

Asian American Times Article

Page 23

And don’t be scared, I was freaked out thinking that it was all in Korean…um, I’m not going to be able to read this! Are you kidding me? But the article is in ENGLISH!! Yeah!!