Hope4Peyton

Yesterday I did probably one of the worst things that, as a cancer mom, you can do on a cloudy, grey, already depressing-looking day. I get email updates from Caring Bridge about some of the kids that I keep up with. I don’t know most of them personally, but like you do for Peyton, I go to the website to see how their treatments are going and how their families are hanging in. Most are like us, tired of it all, ready for life to not revolve around medicine and hospital, and taking everything life throws at them in stride. Many are lifting up their child to God's power, and there are some that there is no word of His great strength in their lives, and that has to be an impossible feeling.

Most days, it’s just a matter of reading on what’s been happening, leaving a message of encouragement and support (those are vital on some days, welcome on any day) and saying a special prayer in my heart. But yesterday?? Oh, it was a 15 hanky alarm day. Caring Bridge is an amazing network of people, and sometimes a name will jump out at me and I’ll go to the site and just read up on a new child.

The first site I go to is for a little girl who passed away from a brain tumor on the 20th. Her site is just filled with names of her friends with cancer who’ve also gone to the Lord in the past few months. So, of course, I had to go and leave my sympathy and prayers on those sites as well. It’s like giving myself an emotional paper cut.

So, to bolster my mood, Peter sent me out to play poker. We have an outstanding group of friends who meet up every other week to have an informal poker tournament and it’s always a relaxing good time. Suffice it to say that I’m glad it’s a relaxing good time, because I never win…in fact, I’ve never even placed in the top three….I just go for fun. Pete wins occasionally, but me? Never. Pete decides I need to get out and have some fun, and he has to work anyways, so I should go to poker and have fun. So, I went. And let me just say, I am a rock star!

I had the most amazing hand I have ever seen played in poker history. Now, this has nothing to do with cancer, Peyton, treatment, ANYTHING…this has everything to do with me bragging about the most amazing poker hand in history! And of course, my husband not being there to witness my moment of poker glory! I was losing, on my way out of the game, and I put all my chips in on a last desperate hand, before the cards were even dealt. My neighbor Greg stays in the hand so it’s just me and him, facing off….to the death!….well, not death, but at least a lot of smack talk rights….I have an Ace and a two, and Greg has a pair of jacks. For anyone who knows Texas Hold’em, you know that at that point, I mentally started to put on my jacket and head home…..but the flop…oh the glorious flop!!….a two….and Greg snorts….and then another two….and everyone freaks out….then the third two flops, giving me a four-of-a-kind, and I flipped! The last two cards were inconsequential, it was a fantabulous poker moment for me. Greg ended up winning that game, but that hand was MINE!! Ahhhhh, the things you’ll remember to tell your grandkids someday, the day old granny got flopped quad deuces….I AM a rock star.

Anyway.

Today, we went to a Spring Festival put on by the Tampa Junior League and Children’s Cancer Center. Yesterday was a cold, rainy, cloudy, stay-in-bed-with-a-book-and-hot-cocoa kind of day. Today was gorgeous, breezy, sunny day and it was perfect for this event.

We got to spend the day with lots of wonderful people who volunteer time, energy, and funds to bring some happiness into the lives of so many and that’s just awesome.

There was a cakewalk with 70 cakes, Adelaine’s mom Angela and I felt like we had walk miles to get a cake, and we only had to knock down 10-12 kids, but we finally got a cake! Angela told me a special secret that cakes have no calories if they’re free, so I was all about getting one of those cakes!

Notice the hair that's growing back, abundantly!!

The kids got to play games, decorate their own hats and cookies, fly around in those big bounce houses and so many other things it was crazy.

Peyton was a little creeped out by the clowns, but the rest of the kids were captivated. Rachael got her face painted again, that girl does love her facial glitter.

They were all so tired when we left, they ran themselves ragged and we’re always up for kids so tired they can barely walk. However, they still had enough energy to bicker, so we sent them to bed. Oh, did I say the kids were the only ones who enjoyed the bouncy things?

I’m considering going to nursing school. One would think I will have had enough of nurses, doctors and hospitals in my lifetime. In fact, if Peyton sees me in scrubs she might totally freak out on me. Pray for guidance in this decision. It’s not an easy one to make and I have some time to consider the options and see if it’s really a calling for me.

f.r.o.G…fully relying on God
—Anissa

ps…thesre are some of the special kids enjoying the day. Don't they all just warm your heart?

Don't for get the Fashion For The Cure show to benefit the Pediatric Cancer Foundation. I have linked the PCF events coming up on the links here. Tuesday, March 27, 2007 6:00-9:00 pm at Saks Fifth Avenue at Westshore Mall. They close the store for the PCF exclusive event.

6:00 Cocktails, Silent Auction and Shopping
7:00 Fashion Funds for the Cure Runway Show

Advanced reservations can be made by calling 813-269-0955 or tickets can be purchased at the door.

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Also, check out this ABC news report on the budget cuts for cancer research. The current administration is asking for a second cut and this will put clinical studies at risk. We have Peyton in a clinical study so that the information that is learned from her experience can be used to make decisions for future patients, so that we get that much closer to a cure.

You know your day is going to be sketchy when you wake up (the first time) in a pool of urine that doesn’t belong to you. I give regards to Rachael for starting my day off with a bang. Poor kid crawled into bed with me sometime during the night, left her mark and was promptly banished forever. The second time I woke up was about 15 minutes before the kids are supposed to be at school, sitting at their desks, ready for the day. With a minimal amount of fuss the kids got to school within 10 minutes of the bell, not too bad. We had 7 tardies on their report cards for last semester, we were only out-tardied by a mom who has triplet third graders, so I think she has the better excuse.

Peyton has pretty much stopped eating in the last month, and she’s dropped a lot of the steroid weight she’d put on. I had thought she’d keep it on longer, but with her appetite gone she’s thinning quickly. However, she still has those sparkly eyes.

Monday I took Peyton to the clinic with no expectations of actually starting her treatment. I went so far as to disregard numbing cream and diet protocols, we just showed up, did her finger poke and left. Her ANC was at 400, with 750 being the minimum for starting Interim Maintenance. We got a week’s vacation with an appointment on both Tuesday and Wednesday of next week to start back up. She gets a spinal on Tuesday and double leg shots on Wednesday. The good times just keep on rolling.

Peyton’s hair is starting to grow back in. She rubs her head and tells me that she loves her hair fuzzy.

Yesterday was a quality day time. The morning was spent with Peyton, taking a long walk with her and the dog…that was a lesson in leash/stroller management. She’s such a tiny adult sometimes, especially when she says things like “It’s lovely weather for a walk” and “Mommy, can you push me less bumpy please?” Our dog is a walking dog. She’s a back yard dog, so yesterday was a struggle in reigning in her excitement at being out of the house. If I could get the dog to walk in a straight line I could just hook up the stroller and let her take Peyton for her walks. In fact, I made the mistake of looping the leash handle around the stroller handle…..and then she saw something, perhaps a squirrel, could have been a floating leaf. She took off running and only by the grace of a quick grab did I keep the entire stroller from becoming airborne.

Grandma gave us some beautiful crocheted pot holders, and Peyton has found a wonderful use for her favorite.

About noon, Grandma came and swept Peyton away and I went to school and took Rachael out for the day. She’s been having some serious attitude and behavior issues lately, and while they’re frustrating, they’re also somewhat understandable. I know that part of it being 5 and the middle child and pushing boundaries…but part of it is just needing some extra love and attention. She needs to be the center of attention that her sister always seems to be. When we walk into the classroom in the morning, Rachael will make sure to hold Peyton’s hand and announce that Peyton’s there because all the kids get excited and run over and go a little ga-ga over her. And Rachael basks in the semi-glory of the attention. She and I had a girl’s day out, we went for lunch, we walked the mall and just spent time together with no interruptions. It was wonderful for me to have my little girl just light up and say that it was the best day ever. It is so important to make specialized time that is devoted to just to the older children. So much of their life has been disrupted and gets changed because of something going on with Peyton. She doesn’t feel good, she has clinic, and she’s in a bad mood, whatever…..they have to cope with more upheaval than they should. I’m planning a day with Nathaniel as well, probably Friday if got to take his spelling test today….which is first thing in the morning…remember, we were late today…see, it all comes full circle doesn’t it?

Today we are low key, lounging around the house, watching Dora, playing Candy Land and drinking strawberry smoothies.

Update on Adelaine:
Adelaine went back into the hospital on Friday with an ear infection and fever. Any time a cancer gets a fever it’s a three day stay while they run a culture on their blood to see if there’s any bacteria. We’ve been blessed so far that nothing’s ever grown when we had to, but poor Adelaine wasn’t so lucky this time. She has a bacterial infection that has spread to her blood. These are so dangerous in kids who have no immune system to fight it off and can be fatal if not caught in time. Thank God that they caught it quickly enough to treat it successfully with IV antibiotics and she will be sent home with a full two week cycle of oral antibiotics. They are unsure why these bacterial infections happen, it can be that the ear infection brought it on, or it’s possible that bacteria can get into the port. There are frightening kinds of bacteria that are stick and attach to the port and require surgery to remove the port and implant a new one. This is not the type that Adelaine has, it’s going to be handled with antibiotics and she should be going home some time today.

Next to relapse, blood infection is the next scariest threat that’s been pounded into my head. We work to be safe for Peyton, but so many of these things are out of our control, most of them are out of our control, and it’s frightening. Please keep Adelaine in prayers as her body heals and works to get these bacteria gone from her system.

f.ro.G…fully relying on God
—-Anissa

There are some secrets that you keep to yourself, and then there are the ones that are so large that eventually they come out and you just can’t hide them. We found out that there are photos out there giving up some of our family mysteries and we’ve decided to just come clean and bare all.

I am Pete’s second wife. Yes, it’s true…Peter was married before me. It didn’t work out. His family and hers were just too different and the rift tore their love apart. Think Romeo and Juliet with a twist.

I've worked hard to make his first family like me. In fact, I finally felt as though I was welcomed for the first time.

We look forward to being able to introduce the two sides of our family. The resemblance is startling, don’t you think? Maybe it’s just the hat, I don’t know.

Allright, it’s all a lie, but we did have a fantastic day at Busch Gardens and we wanted to share some of the pictures we took.

Thank you to Chris Toth, who took care of Peyton all day. Thank you to Grandma Sharon who took care of all three of the kids all afternoon and night so that we could sleep through the night! Man, I’m telling you, Peter’s birthday rocks! We’ll have to have one of these every year.

f.r.o.G…fully relying on God
—-Anissa

As I'm driving on 75 this morning, traffic came to a dead halt at the I-4 juncture. I'm just sure it's a massive wreck and we'll be here for days eating candy and snacks hiding under the seats that have fallen out of backpacks and lunchboxes. I'm not too worried, I'm sure we could last for at least a week. As I get close I saw the most amusing thing. It looked like a human version of the game Frogger. Two guys were dashing in and out of traffic picking up metal pieces of something that were scattered across 3 lanes of traffic. They had obviously dropped boxes off their truck and they exploded like pinatas, sprinkling their tire-puncturing goodness everywhere. They would hang at the side of the road and then make a mad dash into stalled traffic, grabbing as many metal whatsits as they could hold (which were apparently quite prickly from the looks of pain on the men's faces) and then they'd run back and dump then on the weeds. They'd catch their breath and then do it again. Occasionally a car would decide that they just couldn't wait the 36.5 seconds it took them to run back across the road and would almost hit one of them. I had the joyful experience of seeing one of those cars get an instant karma smackdown because just a mile down the road they were pulled off to the sie with flat tires!!

We had to be at the clinic for a finger stick this morning. Because, really, we couldn't find anything else we'd rather do! The first thing I’m told when I get there is that the nurses have had a meeting about us and there’s been a decision made about our maintenance plan. I was a little worried because maintenance is at least 4 months down the road, so what could they have had to discuss now? Maybe they've decided we didn't need to do maintenance because she's such an exceptioinal child. Cindy tells me that they’ve come to the conclusion that although normal maintenance schedule would include a clinic visit every other week, Peyton has to go every week! I started to think, WHY!! And then Cindy says “Because we just figured we miss Peyton too much, so you guys have to come in every week to see us.” Now, torturous yes, but how sweet is that?

I, in turn, let the nursing staff know that because tomorrow is Peter’s birthday and we have plans for the day, Peyton’s CBC will not dare come back less than stellar. See, it didn’t dawn on me what I was doing today. We have been planning for Peter’s birthday all week. The kids are in school, our friend Chris Toth is babysitting Peyton, and Grandma will pick up all the kids and keep them in the evening….all so Peter and I can take advantage of some Busch Gardens tickets we were given. This is something we’re seriously excited about, we haven’t been to an amusement park together without kids since EVER! But it was all hinging on the results of that CBC, because I didn’t even put it together that if she needed blood or platelets, we’d be doing birthday at the clinic instead. Absolute killjoy, trust me. I love them, they’re awesome people, Shiekra they’re not. I told Cindy firmly, “Unless she’s down to the last few piddly drops of blood her body can produce, we’re not coming here tomorrow”. She laughed at me, because our nurses have the best senses of humor of anywhere on the planet, and said “Alrighty”. Peyton had “good blood” today, the CBC results were not great, but enough to get us through the weekend!

I met friends Kathy and Kim for a quick lunch and after we paid the bill, Kathy starts stressing because she locked her keys in the car. She knows this because she can’t find them anywhere in her purse. We tease her about the memory being the first thing to go. Come to find out, it’s worse than we all thought. She hadn’t actually locked her keys in the car, she hadn’t locked the car, in fact…..she’d left the keys in the ignition and the car running the whole time we ate lunch! I thought I was going to be sick to my stomach I laughed so hard. Nice to know it’s not just me. Yesterday when I was at the superwal-mart, I went out the “food” doors when I’d parked at the “stuff” doors….and I walked and walked looking for my car…it took me way too long to remember that I’d parked on the other side of the store….not as long as it took me to actually trek all the way over there! They need a tram system at Wal-mart. Getting old really stinks!

So pray for us tomorrow as Peter and I go to Busch Gardens, that we don’t fall and break a hip or something in our old and feeble years. We’re looking forward to a fun day together, and I am thankful beyond words for the people who provided tickets and childcare so we can go.

f.ro.G…..fully relying on God
—Anissa

ps…I truly considered shooting my radio today. There was a St. Judes marathon of "let's tell gut wrenching stories and make people CRY while they're driving so that next week we can have a Gieco marathon of commercials for all those people who got in wrecks!" It was wretched for me and I hope they made lots of money for the hospital's research and all those sweet kids who need the care, but can we NOT do it during rush hour on 60? Please?

ps.s. I had posted about how much we as a family loooove bubble wrap. I wanted to share that fun on to you all!