Death of a Superhero

A Family's Story about Courage, Bravery and the Defining Moments of LOVE

Our sweet, lil' baby love lost his battle to AML Leukemia on March 8, 2010. We fought long, hard and very aggressively for 2.5 years, only to have his cancer come back for the fourth time to finally take his life. He was only 3 years old.

This entire blog is about Hunter's amazing journey. It's about his life and his love......his determination and his courage.......his absolutely, brilliant personality, and the affect he's had on people all over the world.

He's left an unimaginable footprint on this earth and has changed the lives of thousands of individuals. People who didn't realize how precious life was, now live it with extreme gratefulness. People who took every minute they get to spend with their children for granted, now savor every last second. And people who weren't quite sure what love is all about, now love deeper, love stronger and love with every ounce of their soul.

People all around the world have shared their love, their well wishes, their prayers and their inspiration, and we could have NEVER achieved as much as we did without them. We are humbled by their generosity & their true friendships & are forever grateful for every last person that has come into our lives through our experience with Hunter. He was our precious baby love who we loved and cherished with all our hearts and we are forever crushed and terribly, broken-hearted.

Dance in the clouds baby cakes. Mom & dad are watching proudly & you will remain so very close to our hearts for all of eternity.

Friday, December 28, 2007

It gets worse before it gets better

The bone scan happened yesterday. I could tell just by looking at the computer screen during the scan that it wasn't good news.

The reading came back today and unfortunately the bone lesions have spread to multiple spots. The left leg has done some healing but still shows damage. However, his right leg is now much worse than his left leg ever was. The accompanying x-ray shows that part of his bone in the right leg has been eaten away. It may or may not be long term damage - that has yet to be determined. He still shows the lesions on his ribs and new lesions on his upper right arm and one infected vertebra.

If you remember, Hunter had a "mass of leukemia cells" in his left leg and two ribs. I use the quotation marks due to the fact that we still don't know what the lesions were or are. They did a bone biopsy on his left leg but still no bacteria has grown nor have they been able to determine if it was a mass of Leukemic cells or osteomyelytis (a bone disease). So if the chemo is working and the Leukemia is subsiding - then the idea that this "mass" was leukemic cells is less likely. The only known explanation is a very rare bone infection called multi-focal osteomyelytis.

However, the infectious disease doctor came in today and he seems perplexed. He doesn't see this kind of multi-focal (multiple locations) osteomyelytis in children his age nor in AML patients. He decided to not comment further until after the MRI of his right leg that will hopefully be done today. He also mentioned he is contacting specialists around the World for anyone that has seen a case of multi-focal osteomyelytis in an AML infant.

At least the oncologist is hopeful that we are making some progress towards a better understanding of the situation. However, when it comes down to brass tax - he is just as unable to make a confident diagnosis. He also mentioned he is consulting with a renowned children's AML doctor in Oakland for his input.

The osteopath still needs to put in his two cents. I'm afraid he will be just as confused as all the rest.

Ultimately, we are dealing with a very unique case of disease. None of the doctors have seen anything like this before and they are actively looking for answers.

Hunter is destined for the record books.

3 comments:

jenniferbarrpdx said...

I am thinking about the three of you constantly It is good to hear you have so much support there. I check your blog daily and can not stop the tears. The photos of Hunter are so beautiful you would never guess by looking at them that there is anything wrong at all. Take care and give that little sweetie a hug from us.

Love
Jennifer, Olliver , Loren

Shannon said...

Got the link to your site from Becker's Blog. Wanted to let you know that our hearts and thoughts are with you as you face the days ahead. Cancer changes your life forever...it is so hard to adjust to the new normal your life will become.
Shannon Ford
www.caringbridge.org/tx/ethantf

jules bianchi said...

You are very brave. I miss little Hunter at our PUG meetings, and I hope you get through this quickly.