Monday, September 29, 2008

Mandy's best friend

Best friends come in all shapes and sizes. Think for a moment about your best friend. It wasn't a relationship you really had to pursue, was it? You just sorta clicked, didn't you? You hit your groove right out of the box with each other. Does your best friend make you feel better when you are sad? Does your best friend help heal you when you are sick? Does your best friend make you laugh? Make you smile? Make you feel loved? Make you feel accepted unconditionally? Of course. Because that's what best friends do.

About a month ago, Mandy was given the greatest gift in the world, friendship. True, unconditional, never failing friendship. My friend, Jane, had a poodle. A poodle that she loved and adored. A poodle that she believed in her heart was a dog that would be Mandy's best friend. I know she cried when she parted with her and decided to let Poodle come be Mandy's best friend. She knew then, what we know now. They are a perfect pair, a match made in heaven, two peas in a pod. We are forever grateful for this amazing gift she gave to Mandy about a month ago.

With that, I leave you with some pictures of Mandy and her best friend in the world, Poodle.

Whether they are snuggling on the couch,


going for a walk,



or having sweet dreams



They are always the best of friends. Thanks, Jane for the perfect gifts:friendship and love!



Love to all~

Sunday, September 28, 2008

October is right around the corner

October is almost upon us. In our house, it means all three kids are freakin' giddy about something.

Zachary loves Halloween. No, really. He LOVES, REALLY, REALLY LOVES Halloween. By far, it is his favorite holiday. He will easily be one of those people who has a whole haunted house worth of Halloween decorations that takes him from the first of September to put up every year. He can't wait. He was foaming at the mouth with excitement when the Oriental Trading Catalog, Halloween edition, showed up the other day. At least he isn't that happy when the Victoria's Secret catalog shows up. Yet.

Alannah is quaking with anticipation for October 30. Because Mary Ann, director of the Children's Cancer Center, is the bum-diggity, she will be taking us with her for opening night of Phantom of the Opera at the Performing Arts Center. She could have told Alannah she would give her a new convertible when she turns 16 and I am not sure she would have gotten any more enthusiasm than this. She is beside herself. As in 16 year old girl getting tickets to the Beatles in 1964 kind of excited. She can't wait.

Mandy is alllllllll about October. Since last November she has been planning this October. She will start planning next October this November. Why you ask? Her birthday folks. It is her birthday on October 23. There is nothing Mandy loves more than a day that is all about her from beginning to end. She has a wish list made and on the fridge. She has multiple party options in mind and is in the process of narrowing them down. She wants a chocolate cake with chocolate frosting and cheese ravioli's from Carrabba's for dinner. Shocker, huh? She will not be able to be in school on her birthday, because it is the day after chemo, but she has decided that she and I need to plan on getting mani's and pedi's while the other kids are in school that day.

Ronnie loves October cause he gets football and baseball and world series and all that good stuff. Nirvana for him.

It also happens to be our 18th wedding anniversary on Oct 6. Wow, we have been married forever! Good for us, huh? :-)

So, to kick this grand month off in style, and a little early. Mandy and I spent our Sunday afternoon making a haunted house, of the gingerbread variety. Just for fun, a few pictures for your enjoyment.

In case you were wondering, this frosting is FOUL, NASTY, DISGUSTING STUFF. It works GREAT as cement, not so much for the tasting thing. Mandy working hard with her pastry bag.



I love this. It is her "thinking face." The funny thing is Ronnie, Alannah and Zachary all suck in their bottom lip. She is a top lip sucker. Of course, she is the only left handed one in our family. She just likes to do things differently. :-)



She was very intent on following the instructions. She soooo did not get that from me!



And, the finished product.



Really? What else could you have this much fun with and turns out this cute for only $9?



May your October be happy and full of celebrations, laughter and joy!!

Love to all~

Friday, September 26, 2008

Weekend plans... be there or be square.

Sherry Tucker is an amazing woman and just like her son, she is a hero. She lost her son Zach to a brain tumor a little over two years ago. He fought a valiant battle and was healed in heaven.

She has chosen to make sure her son's legacy of heroism lives on. She and her husband Dirk founded the Giving Hope Through Faith Foundation. It is an incredible foundation that sends gift cards once a month for a year to local families going through treatment. The gift cards always seem to come at just the right time. The financial strains on families in treatment is profound. To put money in the hands of the families is a HUGE help and we are so deeply thankful.

But every bit as important as the gift cards are what come with it. She always includes a beautiful and understanding letter from the "been there, done that" perspective. The topics vary from keeping your faith to dealing with your anger and sadness to how a smile can make even the most wretched day better. Every time I get a package from Sherry it is like getting an understanding embrace and the very real knowledge that someone said a prayer for Mandy and for all of us that day.

Sherry has written a book about her families journey and the faith that carried them through even the darkest of times. It is a heartbreaking and uplifting journey demonstrating true faith, true bravery and true love called Unfinished Love: Walking by Faith through Pediatric Cancer

She will be at Books a Million in Westfield Mall in Brandon this Sunday from 2-4 signing books. Go meet her. Buy a book. I know you will be touched by her and the story of her family and their unwavering faith in God and love for each other.

Also, Saturday is a USF hockey game. This is not just your average run-of-the-mill hockey game, folks. They are very kindly and generously donating the proceeds to four Tampa area families. Connor, who has been inpatient for a very long time due to a leukemia relapse. Sophie, who started treatment very recently for leukemia and is the beginning long protocol. Mattie, who is just out of treatment for a brain tumor with a frighteningly high rate of recurrence. And Brooke who has relapsed leukemia and will be going for a cord blood transplant because they were unable to find a bone marrow donor.

Please, come out and show your love for these families. The game is Saturday at the Brandon Ice Sports Forum at 7:30 pm. It is an easy way for you to put financial help into these families hands and you will get to see an awesome hockey game and have a great time to go with it! What more could you ask for?

So, there ya go, ladies and gentlemen, your plans for the weekend...Hockey game on Saturday and book signing on Sunday. See you there!

Love to all~

Wednesday, September 24, 2008

From the mouths of babes

Had you said to me, when I was 14 years old, "Hey, how 'bout you get up in front of a room full of adults, about 150 of them or so, and make a speech. Oh, and? Could you make it about a really personal, painful subject?"

I would have kindly suggested that you step away from the crack pipe.

Alannah was asked to speak last night at the annual Board of Director's meeting for The Children's Cancer Center to give a siblings perspective on what the Center has meant to her. If I had a nickel for every time I have sang the praises of the Center I would never worry about bills again! They have been a life saver, a God send and I can't imagine this time without the amazing staff and volunteers at the Center.

And yet, nothing I have ever said has ever come close to what Alannah said tonight. She was polished and composed and articulate. She was painfully honest and laid her heart and soul out there for a roomful of strangers to see.

The evening opened with Nikki Hawkins, a beautiful 13 year old girl who is a brain tumor survivor singing the Star Spangled Banner. Stunning!!

Then Eddy Kerchione who is home from Irag while his son, Angelo fights leukemia led everyone in the Pledge of Allegiance. He was so awesome and invited all the kids up with him.

Then Bob McNamara, a bereaved father, delivered a beautiful invocation.

Jamie Bridges is a mother of two beautiful little girls. Her youngest, Mattie is fighting a brain tumor. She spoke beautifully about what the Center means to her as a mom. She was honest and heartfelt and did a wonderful job.

Then, it was Alannah's turn. She was really nervous, but you couldn't tell at all to look at her. I am certain I am a bit biased, but I thought she did an amazing job. Though, I can see the nerves in her face here. She kept it together beautifully.



She took the stage, in front of a roomful of about 150 or so adults, 95% of whom she didn't know and had this to say:

"About seven months ago, doctors found a tumor behind my little sister Mandy's eyeball.

There was always a possibility of this happening. She's had neurofibromatosis since she was really little. I can remember being around seven years old and reading through a brochure on the coffee table with that long word on the cover. It meant trips to the hospital for periodic MRIs. It meant bottles of medicine lined up in the cabinet. It meant little brown spots called cafe ole marks on her skin. I never imagined what it would be like if a tumor ever did start growing. So when one did, I tried to pretend that the chemo was just one of those normal things. When something big like that happens, I implode. I'm an alone-crier.

The chemo made Mandy really touchy and angry all the time. She was scared and mad that she had to do this. People were poking her with needles or pumping her full of meds every time she turned around. She was mad that she couldn't go to school on or after chemo days, which meant missing field trips or class parties sometimes.

There are times, I have to admit, when I felt jealous. Not of the chemo, but of all the presents and attention, That's kind of juvenile and I'm embarrassed to admit that's how I felt, but it's true. At the same time it scared me. It felt like a funeral, when everyone brings flowers and casseroles. Everyone feels all sorry for you, when really that's the last thing you want. You just wish everyone would act normal.

But at the Center, everyone did act normal. Nobody was really happy to be there. Not about the reason they were there, anyway. But as long as that reason was there, it was nice to be at a place where everyone had that reason. It was really great to be there because Mandy could just be normal. She didn't have to worry about low blood counts or anything. Normalcy is really important to her. She always keeps her port covered and she didn't want to shave her hair when it started falling out, even though it was getting everywhere and itching her head.

I loved it there too because it made me feel like I was doing something. The emotion I hated more than anger or sadness was the feeling that I couldn't do anything to help. Even if it was only pushing kids on the swings until my arms were ready to drop off, it was better than nothing. That's why I like helping out at the fundraisers too, like the Relay For Life and the Cure Kids Cancer Challenge. I also feel connected while I'm there. There are all these people who know what's it's like, who really get it. Anyone can be sympathetic. Everyone is. But it's nice to have people who really understand.

My mom calls it the monster under the bed. She reminded me of when I was little and I was scared of the closet, because I thought nightmares came out of it. That's what it's like for her. But you have to look under the bed sometimes, because it's just going to fester and grow if you don't. For me, it's like a little box inside my head, filled with every possibility, good and bad. It's the same principle, though: I still have to open the box or it'll swell up until I won't be able to open it anymore. The Center makes sure I don't have to open it alone."


My pride runeth over...

Love to all~

Stable

My time is somewhat limited at he moment. I will post more about the proud reason for why that is later tonight. But, I wanted to share with you all a few things.

Mandy's MRI report was waiting for us when we got to clinic this morning. Everything is unchanged. Enhancement is where enhancement was. Size is the same.

This news is fine. Would I have liked for them to say the optic glioma/s is/are shrinking? Well yes. But, I would also like to win the lottery. Really, at this point of this process stable is as good as we can hope for. It is certainly better than progression or increase in size.

There are numerous areas of abnormal signal. These are most likely a product of a common phenomenon with neurofibromatosis. These areas merit watching, but are most likely fine.

Second dose of new chemo was today. It definitely makes her really tired and a wee bit of tummy upset. All in all, she seems to be handling it well all in all. Bloodwork was fine...ANC 1390, Platelets 271, all is good.

So, as good of news with the MRI as was feasible to hope for. That is why she is in treatment for such a long time. These tumors are slow growing, which is good. That also means they are slow to shrink as well.

So, the fight continues. Thanks as always for the thoughts and the prayers. More on our plans for the night later.

Love to all~

Monday, September 22, 2008

Anticipation, it's not just for ketchup anymore

We are home. Mandy did a great job getting her port accessed, the nurses and anesthesiologist were friendly and lovely to her. She was happy and giggling and having fun with them right up until she drifted off to la-la land with help from some Propofol. They handed me my little beeper, ala Carrabba's "Your table is ready now", promised me they would take good care of her and page me the instant she was done and off I went. They were very sweet, VERY good with her and very tolerant of me.

All that being said, somebody, somewhere owes me a dye job on my newly developed grey hairs.

I went and I waited, oh so patiently, for the hour and a half scan to be over. Hour and a half came. Hour and a half went. Truth be told, I start getting antsy at the 89 minute mark. Patience, in these circumstances, not really my strong point. At the hour and 45 minute mark, I was coming out of my skin and was about to go all rabid dog on the door to the MRI suite and claw and chew my way through it. Well, okay, maybe not. But, there was pacing involved.

At one hour and 48 minutes, (yes, I looked. Don't judge me!) my little beeper went off that signaled either my table was ready or my daughter was out in recovery. I walked calmly(sprinted like crazy woman being chased by rabid dogs)back to recovery.

Initial Momma triage reveals color good, breathing good, not yet awake, all good. But wait, the back of her hair is soaked. My first thought is that it is drenched with sweat, which when you have a post anesthesia fever issue like malignant hyperthermia, it tends to set off some alarm bells in my head. Good ole trusty hand to forehead test reveals temp feels fine.

Hmmmmmm. Ok, panic one averted.

I examine further it looks like sticky....red....holy crap! Blood! It looks like blood! It was rinsed out of her hair, but was obviously blood. I lean her up to look at the back of her head to figure out the source. Cause really? MRI? Not exactly an invasive, bloodletting kind of thing.

Panic two has set in.

Say to nurse, "Why does she have blood in her hair??"

Nurse, "I don't know, let me ask the attending nurse."

Meanwhile, I am looking for signs of trauma. Nothing.

Looking in her ear to see if she had bled from there. Nothing. Alllllllllllll sorts of visions (none of which included sugar plums) dancing in my head.

Nurse comes back and says, "When the nurse injected the contrast, her tube came disconnected from the port access."

Oh. Ok. Disconcerting? Certainly. Scary? Oh yea. But, really? That happens. Pretty easily, in fact. No one's fault. I am completely sure she was fine and in no danger. Still? Wish someone would have saved me the 47 new grey hairs I am now the proud owner of and told me first.

Other than that drama, all went fine. She is feeling good, recovered beautifully and is the proud owner of a new Webkinz for her trouble.

No results for a day or two. Which leaves me waiting patiently.

Waiting.

Again.

Patiently.

'Cause I am good like that. Patient. You betcha. Paaaaaaaaaaaaaaaaaatiently waiting.

'Cause that's how I roll.

Thanks as always for checking on her.

Love to all~

Sunday, September 21, 2008

VERY brief update

Our little Willis family infirmary update: the only one left sick at this point is me. Mandy has no fever and mercifully managed to get out of a mandatory hospital stay. Alannah is back up to darn near 100%. Nasty little virus this thing is.

So, this means that Mandy and I will hit the road for St Pete at the crack of dawn tomorrow and get that MRI taken care of. I won't have results for a few days, but will let you all know when I do.

Thanks as always for the prayers and for checking on her.

Love to all~