View Mobile Site
  •  
  • Home
  • OBITS
  •  
  • Marketplace
  •  
  • Community
  •  
  • Gas Prices
  •  

 

Ask the Expert

Signal Photos

 

Angels for Jack

FIRST-PERSON

Posted: October 27, 2013 2:00 a.m.
Updated: October 27, 2013 2:00 a.m.
 

Our family moved to the Santa Clarita Valley in December of 2008, just two months after the Marek fire that took our home in Kagel Canyon and a lifetime of possessions. The fire also destroyed all of the tools my husband used in his construction business.

But, we felt very fortunate to find such a beautiful place to live.

Our daughter Sophie-Marie was just 2 ½, and son Jack all of 6 weeks old.

Little did we know a far worse tragedy would strike our family.

Sophie went to Bright Horizons preschool in Acton, and I’d cart Jack along with us, who wanted so much to go to school but he wasn’t old enough yet.

During the hard times when we didn’t know where our family would live, little Jack would greet me each morning with the most amazingly huge smile. There was something about that little guy that kept me going.

Although Jack was a robust little baby boy, concerning signs appeared as he grew. For one, he seemed much more slight than other boys his age.

By the time he was two years old, his blood was found to be low in iron. After another six months, my very articulate little man’s speech seemed to be changing and Jack began having unexplained fevers. Then my little boy began limping and, finally, his speech began slurring.

I had a sinking feeling in the pit of my stomach.

In late October 2011, his doctors at Children’s Hospital Los Angeles gave us the news: “There is a mass in Jack’s brainstem, and we wanted to be the first to let you know because all of your doctors are going to change; you’ll be with a whole new team.”

Both of the doctors’ eyes were welling with tears. I knew the news was bad.

I sat in a small room with about 12 doctors and nurses for the diagnosis - Diffuse Intrinsic Pontine Glioma – cancer.

Radiation therapy would prolong his life, the doctors said, but that eventually the tumor would rebuild and at that point of “progression,” there would be nothing more that the doctors could do. No chemotherapies could change the outcome.

On the day of diagnosis, I called my husband frantically with the news. We didn’t even have money for gas at that point, but our dear friend Katrin loaded up her kids, Barry and Sophie, and came down to the hospital.

Friends from church also came to support us. My friend Michele came to visit me that night, and the night after.

Both of these two ladies began a wave of community support for us that we will never forget.

All those who were so supportive became “Jack’s Angels” to me.

That night I searched wildly on the internet for DIPG. What I found was that there were no survivors. While Jack was in treatment I spent a year researching his condition, but the answers never changed.

Of pediatric brain tumor mortalities, DIPG takes roughly 80 percent of its victims.

We spent six weeks travelling down to the hospital each day for Jack’s radiation treatments. The steroid medication to control the brainstem inflammation made him extra irritable. But, Jack slowly got his strength back.

A local charity adopted us for Christmas. Neighbors in the community donated Disneyland tickets to the family. Friends raised money for us so we could afford to try different therapies. Three local doctors offered their services to Jack for free.

The goodness of people around us overwhelmed us, and renewed our love and faith in our fellow human beings.
Jack had a follow-up MRI Jan. 11, 2012, showing a 50 percent reduction of the tumor. The doctors were elated.

“We have some time,” they said.

Jack enjoyed a few good months of fun and play, but Spring of that year I was sure that the tumor was returning.

He started becoming a little weaker and then began to drag his leg. He could no longer run. And in the last week, he fell twice, breaking his heart, and mine. Within four days I had to help him climb stairs.

Doctors gave Jack weeks to live. Hospice started coming to visit.

Jack took his last breaths at 6:40 a.m. on July 30, 2012 – just a month shy of his 5th birthday.

The Michael Hoefflin Foundation supported our family throughout Jack’s last months. And the Hoffmann Hospice, a non-profit group, continues to look after my Sophie in weekly grief support groups.

From the time of Jack’s diagnosis, the selfless acts of kindness that came from strangers and friends in Acton, Agua Dulce and Santa Clarita led me to start a non-profit foundation called “Jack’s Angels.”

Our organization has three guiding principles: that we raise funds for DIPG research; raise awareness for the urgent need for research; and that in raising awareness, we support the arts and education for children in the local community.

I wish I could tell you that we found the one thing that could help. I wish I could tell you that I didn’t believe in a God that allowed little children to die.

Today, I can tell you that I am grateful, so grateful for the time that I did have with my Jack.

I can tell you that sometimes people come into our lives only for a short time, and we don’t always know why immediately.

For more information about Jack’s Angels and its activities go online at http://jacksangelsfoundation.com/.

 

Comments

Commenting not available.
Commenting is not available.

 
 

Powered By
Morris Technology
Please wait ...