Tuesday, September 21, 2010

Making a Difference. My niece, Maddie and her struggle to solve the puzzle.

When life throws you a curve ball, whip out your ukulele and start strumming.

That's what my then 16 year old niece did when she fell ill last September, or she would have done if she had her uke back then. My sister, Maddie's mother, called me one evening a couple of weeks after a family reunion to ask me about the symptoms of mono, something I had when I was Maddie's age. It was diagnosed as a viral infection.

But Maddie's symptoms grew from the initial fatigue, to severe shocks in her feet and lower legs, to the sensation of a 300 pound rugby player, who I think she named "Oscar", sitting on her chest.

The conditions worsened still, some of a private nature, and still others of an ocular nature. The pinches and shocks continued to progress up to her waist. The pain was excruciating. The symptoms progressed to the point that Maddie needed a wheelchair and a first floor bedroom because it had become too difficult and too painful to use the stairs in their century-old Victorian home.
Maddie has some awesome custom Converse!

There were countless middle-of-the-night trips to the ER, lots of blood work, several MRI's, a CAT scan, spinal taps (yes, plural) all of which left the doctors and specialists in some of the finest medical institutions in the Eastern US scratching their heads. There have been many helpful and compassionate professionals along their journey who have helped my sister navigate the complicated path of contacting specialists who may have held the secret piece of the puzzle that would put Maddie on the path to recovery.

There have also been some very large disappointments from some highly regarded specialists who reviewed Maddie's MRI's, inspected her without regard to Maddie's self-esteem, and after 5 minutes of their time told my sister the problem was all in Maddie's head, that she was a psych case. Still, there were others who suspected my sister of Munchausen syndrome by proxy, which meant they accused her of intentionally harming her own daughter to gain whatever satisfaction there is to gain from something as despicable as that.

The struggle to diagnose Maddie endured through February when at some final point of insistence a medical professional finally listened to my sister and reviewed the growing mass on the 3 MRI's Maddie underwent in the 4 month long journey, all of which had been reviewed by physicians and surgeons, specialists, if you will, who all discounted it as "inconsequential".

And it was malignant.

Maddie underwent surgery where they removed her thyroid; the tumor was that large, having been allowed to grow for 4 months. She underwent radiation therapy, which is scary stuff because they tell you that no one can be near her, or touch her or touch what she touched for about a week. And the pillow has to be tossed out afterward, along with the sheets. But she survived, and that's what we care about.

And we all prayed and held our breath, and hoped and wished and crossed fingers that Maddie would start to regain those things she'd lost. And some things were showing signs of coming back. She could walk better, for example. Her eyes were better. Some of the symptoms lessened. But there were other things that weren't getting better. She could no longer hold down food so she was fitted with a feeding tube.

And then it all started slipping back again. The tingling, the ocular disruptions, the breathing, and the fatigue were returning.

The diagnosis didn't end with cancer.

Two months after Maddie's diagnosis of cancer, by which time the cancer had metastasized to her lymph nodes, the surgeons and specialists all agreed that the paralysis was not due to "mental stress", but rather the paralysis was due to her being sick with cancer. Eventually, after almost a year of debilitating and paralyzing symptoms, Maddie was diagnosed with paraneoplastic syndrome (things that occur around a cancer, or "Neoplasm"), a condition related to cancer where the body mistakenly attacks healthy cells.

After the dismal experience at Johns Hopkins where the care Maddie received was not in line with the stellar reputation the hospital has maintained, my niece was referred to Mayo Clinic in Minnesota where once again we hold high hopes that the caring and compassionate specialists there will solve the riddle that Maddie's body holds; specialists in paraneoplastic syndrome.

Again, we'll pray and hold our breath, and hope and wish and cross fingers that Maddie will start to regain those things she's lost. We'll have confidence that the specialists in this particular case will be able to positively treat Maddie with the compassion she deserves and the results we're all wanting for her.

I have a donation box on the right sidebar of my blog to help fund the expensive journey my sister and Maddie need to take from Pennsylvania to Minnesota this fall or winter. All donations go directly to my sister, Laura, all of which will be used to help her family fund this trip.

I give my thanks to all of you who've read about Maddie's journey. Huge thanks to all of those who have helped support my niece and her family, whether it was with donations, a prepared meal, or a hug. You are all angels. To everyone reading this who has, or has watched a loved one struggle with a debilitating illness, you know the emotional strain this takes on a family and individual.

I want to especially thank my sister, Laura, for being such a great Mama Bear and fighting the fight for Maddie and want to let the world know that long before the cancer diagnosis, she knew the key to the problem was in that first MRI when she saw the small mass on the thyroid that the doctors said was inconsequential.
Maddie over the summer with her sister, Emily (top), and her cousin, Bridget (middle).


Molly said...

my heart goes out to maddie. i hope they find the cure soon!

monkeysalwayslook said...

My thoughts are with you and your family Annie.

Anonymous said...

Thanks for the overall picture, Annie. Every step of this journey has been confounding and you have summed up Maddie's awful saga in something like a minature book. We continue to pray for her and her family. Not much else us "peons" can do. So thanks for posting the donation box. I hope it helps. Nanette A

Laura said...

Thank you to my amazing sister for getting the word out about our sweetheart - and thank you to everyone who takes the time to read, pray, and donate, to help her get to Mayo. I am overwhelmed and moved beyond words.

Anonymous said...

Mere words are insufficient. They cannot begin to convey what our beautiful young Maddie has been through. She is our hero, our Warrior Princess; her faith, grace and courage inspire us in all endeavors. We love her with a proud and fierce love. We're so blessed to have her in our lives! Grandma & Grandpa

Andrea said...

Good morning. I will add Maddie to my church prayer chain. With God all things are possible. There is a little boy (he is 5)Luke at my church last year they found a 5lb tumor in his little stomach (fast growing cancer), well after a year of virtual pain and chemo... He is cancer free. So in that miracle, I know Maddie will be ok. I just wished she could come to the wonderful hospital in San Francisco, Ca that Luke was in..

FYI, I am Rhonda's sister Andrea..

Blessings and healing.

Belly Charms said...

I will keep you all in my thoughts and prayers. I know all too well about what you are all going through and my heart goes out to you. My younger sister has brain cancer.

I am going to post a link to your story from my blog and hopefully help you get more donations for Maddie.

Fairyqueencrochet said...

I'm sooo sorry this has happened to Maddie! My heart goes out to her and your family, Annie. I will keep her in my heart and prayers.
Sandy: Fairyqueencrochet

Annie Howes Keepsakes said...

Thank you everyone who donated and who comments, and those who read and prayed. Thank you all so much :o)

Kelly Warren said...

i can't imagine what both Maddie and your sister are going through. you are all in my prayers.

and guess what my word verification is: "bless" may you all be blessed.

Annie Howes Keepsakes said...

Aww, thanks, Kelly. What an appropriate word :o)

Updates on Maddie to follow.

Audrey said...

What an incredibly heartbreaking situation. I am praying for Maddie and her family.
God Bless you all.

Allie said...

Oh Annie - I am so sorry - I am praying for you and you sister and niece. Hugs to all of you