Friday, November 7, 2008

Picture them all in their underwear

It has been a stressful week. Chemo happened a day early this week to accommodate an MRI on Wednesday. Then just for a little added stress, Mandy was running a low grade fever for a couple of days. Poor baby even got a flu shot this week. Good times.

The good news: chemo went well. Her blood counts were good. She was a little sicker than usual afterwards this week, but nothing a little Zofran can't handle. Her MRI went well also. The results are in and everything was stable and unchanged. Everything is the same size and everything that enhanced with contrast before still does now. I still continue to hope for shrinkage. But, as I have said before stability may be the best we can hope for.

Mandy had a rough week this week. I wasn't sure if I would be able to make it to the Evening of Hope tonight. The Evening of Hope is a dinner put on to help expand the Angel Program, a network of businesses that step up and volunteer to assist families in medical crisis.

Here's where this gets scary for me. I have to speak. Not like, "Hi, my name is Natalie. It's nice to meet you." Nooooooooooooooo, I have to speak. As in speech. With a microphone. And possibly a podium. To three hundred strangers. Well, okay, I will know probably 20 people there, so to 280 strangers. But still? YIKES!

I have no problem it quite well. Do it a lot. But this.....oh my. It's hard to cut your heart open and lay it all out there. In front of strangers. 280 of them. That's what I am trying to do in this speech. Did I mention the 280 strangers?

So, here is what I have written to share with these people tonight. Hope I don't puke. Or sob like a two year old. (I so am not a pretty Demi Moore in "Ghost" kind of cryer. No, people, I am a snot running down my face, red eyed, puffy ugly cryer.)Or fall out of my dress.(Could happen.) Or trip and go splat headed up to the podium.(I'm darn near 6' tall. My husband is 5'7". Suffice it to say, I don't wear heels all that often. Or forget what I am supposed to say and stumble around on my words like a drunk.(Cuter when actually drunk than when merely a sober idiot.)

Here goes....tell me what you think.....

My youngest daughter, Mandy has a brain tumor. That is still a very hard sentence for me to say. My 8 year old daughter has a brain tumor. It is a horrible string of words to have to put together.

Mandy is a beautiful little blonde bombshell of a girl. She loves all things girly. Pink is her be all, end all, very favorite color. She would always rather wear a dress, the pinker and sparklier, the better. She loves music and loves to sing. She is quite shy, until she gets to know you and then you can’t shut her up. She has a voice that projects across a crowded room. You never have to look for her, just listen. And you will always find her. She always has an opinion. She has a momma's heart and loves to baby stuffed animals and babydolls. She has a brain tumor.

She was born with a genetic condition called Neurofibromatosis Type 1, also called NF. This is a disease that means her DNA lacks a tumor suppressor gene, so anywhere in her body tumors can grow at the nerve endings. In Mandy’s situation, all of the tumor growth has been centered in her brain. Most of the time, the tumors are benign, however sometimes they are malignant. In Mandy’s case, we are fighting a tumor on her optic nerve called an optic glioma and numerous tumors in her brain stem area that are benign, but have the potential to be catastrophic because of the location. She is currently 8 months into a chemotherapy regimen that is slated to last for approximately two years. Once a week we drive up to All Children's clinic where she receives IV chemo drugs through a surgically implanted port. These drugs make her feel miserable, the disease robs her of her chance to be like every other kid, robs my other two kids of the chance to live like every other family, I can no longer work because of the time demands associated with this battle. Our life sometimes feels like it is not our own. It is a dark and often lonely journey. I have often been left with a feeling of being alone in a crowded room of looking out and seeing normal life progress and being shocked that it continues.

That being said, this journey has brought us blessings, enormous blessings that without it our family may not have had the privilege of seeing. Every time you turn on the news, there is 15 minutes of mostly tragic and depressing information, then weather, then sports, then Leno. What doesn’t make the news is the little miracles that happen every single day. I wish it did. I wish for everyone to know the goodness of the world that we see in all of you. I wish it was shouted from the rooftops the good work that organizations like the Angel Program do every single day. I wish everyone knew, how much impact those acts of kindness and love have on people’s lives. We have been personally blessed by people’s love and kindness and generosity, but even bigger than that is the blessing of seeing all the good work being done, to all sorts of families. It is not WHAT people do, be it a huge donation of money or goods or a donation simply of time and love, but THAT they do. The knowledge that people care, that people are there, that people support your battle, that means the world. It truly isn’t what people do, it is that they do that means the most .

Other than the obvious, major illness takes two huge tolls on the families dealing with it, money and time.

We came home from about a week in the hospital back in March and our pool pump had died. Under most circumstances, at most, it might have been a curse word muttered under your breath, a swift kick to pump and then a call to the repair man. For us, that day, it was just one more thing that we couldn’t deal with. We had neither the money nor the time. A friend told me about the Brandon Foundation and sent Liz and Natalie our information. These two dynamic women showed up, armed with love and faith and asking for a to do list. In a matter of a week, our pool was fixed, the water balanced and just in time for Mother’s day. Our family and another family battling pediatric cancer spent the day splashing and playing and relaxing. What an amazing gift that was. The knowledge that someone, or several someone’s cared and wanted to help was the biggest blessing of all though.

We needed a ceiling fan installed in my oldest daughter’s room. Again, no time and no extra money. Again, in swooped an Angel from the Foundation, who said, we can’t fight the medical battle for you, but let us take this one. And just like that it was done. This same angel took it upon himself to adopt every other maintenance item around our house that needing tending to. He even went so far as to drop off a gallon of milk one day when I needed it. A simple gesture, sure. But, on that day. At that moment. Not something I could accomplish myself.

All of these things could not happen without the support of all of you. We keep a website about our daughter, to keep people updated about not just her, but of our other two children as well. The headline at the top of it reads, “One little girl battling NF and optic glioma, with an army of love behind her.” The Angels from the foundation, Natalie and Liz and all of you who support the great work the Angel program does are part of that army. It is a huge army encompassing family, friends and even strangers. From the bottom of my heart, I am so thankful for all the Angel program has done, for us and so many other families like ours.

It is easy to make a difference. Your investment may be small. The difference it makes is huge. A well-timed gallon of milk can do as much good as anything else.

I would give anything to fight the battle for my daughter, to take away the pain, the fear, the horrible drugs that are meant to heal but leave so much havoc in their wake. I would give anything to take that on for her. I can’t. I can’t take that battle from her anymore than you all can take the battle from us. I can hold her hand, love her, support her and make sure she absolutely knows she is never, ever alone. Everyday, the work that you all do does that same thing for our family and all the others you help. You can hold someone’s hand, bring a dinner, weed a flower garden, make a mortgage payment, help with groceries, the list goes on and on. But you can take a bit of their burden and carry it for them. Liz, Natalie and the angels who have helped our family, have made sure to let us know we are not alone. They, and all of you who support the Foundation and the work they do, are all part of that army of love behind our little girl. I thank you for that, from the bottom of my heart.

Love to all~


Susan said...

Perfect, Natalie! Don't change a thing! You wrote from your heart and as always, it is just right.
I'm glad Mandy got to enjoy Halloween. She looked adorable!
Love ya,
Susan Burress

Anonymous said...

Hi Mandy Electra's daughter says Hello!!!

Sarah Nessel said...

Natalie, that was a GREAT speech. I hope you didn't change a word. I'm sorry I wasn't there to see it. And I'm so glad to hear that Mandy's MRIs are stable. Keep writing, and keep up those speaking engagements! They say it gets easier every time!