Monday, December 16, 2013

A very big deal

Today at our last visit with Dr. Henry
For months I have been preparing for a milestone. I knew it was coming and I have been shocked by my intense emotions about it.

Most of you don't know the story, but I will share it with you here, because I want you to join my family in this celebration.

On Christmas Eve 2008, when our son Ronan was two years old, he went for a nuclear bone scan after months of tests to figure out why our baby was limping, and finally could barely walk. I expected that test to show a fracture. Instead, it showed a tumor the size of an egg in his hipbone.

It was not cancer. It was cancer’s cousin, Langerhan’s Cell Histiocytosis, or LCH, a rare blood disease viewed as an overactive immune response.

It has been five years since Ronan’s last chemotherapy treatment, a combination of Vinblastine and steroids, administered through a port in his chest. He was almost three years old when he finished.

The lessons we  learned that year about life and love, and in successive years about pain, grief, trauma, and gratitude as my family unraveled and healed from this experience are lessons that re-made me and all of us. Ronan got a second chance and so did my husband and I. We got a do-over.

We fell into the rabbit hole and we saw what was down there. It wasn’t pretty. It was brutal. We felt alone and terrified. 

Ronan had a year of chemo and many, many countless scans, MRIs, tests, late night visits to Phoenix Children’s Hospital where we were greeted by kind nurses, clear-headed doctors, wonderful staff. We saw the face of god and love in the form of the compassion and generosity we were shown.

Ronan's doctor, Michael Henry, was our calm guide and friend through that scary year and ever since. He answered maybe a million crazy questions. He is always kind and generous with his time.

Our anesthesiologist, Aubrey Maze, showed up every single time for Ronan’s MRIs. At our request Aubrey Maze made it 20 procedures.

I learned that year that gratitude would reshape my life. And it has. Gratitude fills me every single day.  Everything I do in my life from parenting my beautiful kids to writing to designing fabric to making art has been informed by the journey we went through with our son. There is a light in my heart and it shines with love and gratitude.

LCH is viewed as an orphan disease, because it is so rare that there isn’t a lot of funding for research. Our aim is to celebrate Ronan’s journey and beautiful health by fundraising on the page we created. All of the proceeds will be earmarked specifically for the LCH fund at Phoenix Children's Hospital and will be used as needed. Your donation is fully tax deductible.

Even if you make a small donation of just $10 you will be helping. I am asking the whole world and everyone I know to please make a small donation. 'Tis the season. 
Please join us in our profound gratitude. Click HERE.


alobsiger said...

What a gorgeous post! I'm so happy for your family! Gratitude is a very power feeling. I too feel it every day. Blessings to you all!

Catriona Sinclair said...

Thank you for sharing such a personal story. I am so glad that your son is now healthy and wish him a long and healthy life! And thank you for your wonderful fabrics!


Oh, Carrie, I am so touched by your story. It is one of Hope. I will indeed pass this on. Please let me know if there are also other ways that I can help.

Also, this brings another inspirational message with your quilt THE WATERCOLOR and Rowan's art work! ��

Prayers for Rowan's good health and a cure.��