Today is 9 years since Nick was diagnosed with cancer. 9 years since his own independence was taken away and then his precious life.
Contrasts have been a major theme for me this week and it’s been tough. I think about all the children and young adults who are battling cancer right now. Some have just found out that their lives have changed, some are healed, some have relapsed one, two, three times, some are away getting transplants, and some are saying goodbye to their families.
For each and every one of them, cancer has taken away their freedom to live a happy and fulfilling life. It has yanked them off their path and thrown them into a war. It has irrevocably changed their lives and their families.
It breaks my heart and is difficult to live with.
But then I see the joy that our kids find through the tragedy, the loss, and the restrictions. They understand what they can no longer do. But instead of letting it defeat them; instead of allowing cancer to take away their independence, they fight and treasure what they are able to do.
I have often been impressed by their tenacity, altruism, and determination. I have cried from their loss, but refuse to let it break me, because they don’t give up.
Today I remember my boy, Luke, Justin, Reese, and all the other children and teens who never gave up, but fell in battle. I honor those who are fighting so hard like Zach, Markel, and everyone else in the throes of their battle.
Today we remember our freedom, and I thank everyone who keeps us safe. My heart and love goes out to those who fight a different battle every day of their lives.
I still remember interviewing Nick Bowen and his mom, Carol. At age 11, Nick was rushed to the hospital after he passed out in the tub. He was diagnosed with a brain tumor and stayed in the hospital for weeks. Carol said, “All I brought with me was my pocketbook and my Bible.”
We don’t plan to be told that our child has cancer and not be able to go home. That was how the Nick’s Fight to be Healed Family Hope Bags developed. We thought, What would a family need for an emergency overnight stay at the hospital? Ideas for what this bag would contain came from an amazing warrior, Luke Romano. Luke dealt with cancer for seven years, so was an expert on preparing for hospital stays and what a family needs. Usually one parent has to stay with their child, so the Family Hope Bags are geared to support both. The “Red Bag” is delivered by the child life specialist or social worker when a child is diagnosed and inpatient.
There are essentials like shampoo, conditioner, body wash, lotion, hand sanitizer, hair brushes, toothbrushes, toothpaste, deodorant, hair ties, laundry detergent, and chapstick.
Being in a hospital and facing cancer is devastating, so we focus on making others comfortable. Having cozy socks, eye pads to block out the light, headphones to listen to music, a journal to write your thoughts and keep track of doctor notes are all included.
Hope and the connection is brought about by including a letter from a local family who has gone through what this family is now going through. We know how scared our families are and to have hope given by someone who have been there is priceless. This year we also had kids from Niskayuna Elementary School writes cards of comfort that are placed in every bag. They are thoughtful and compassionate notes.
Family Hope Bags are our most time consuming project, but it is also the most worthwhile. Besides the wonderful staff at The Melodies Center, these bags are the first line of comfort to get a family emotionally, financially, and physically through cancer treatment.
Everyone calls them the “Red Bag.” Surrounding this black front with white logos is a red duffle bag that families can carry back and forth to the hospital. Our wonderful sponsors donate gift cards to Starbucks, Dunkin Donuts, the cafe at the hospital, Panera, and the Recovery Sports Grill provides gift certificates to their restaurant. We couldn’t do this without them.
Annually, the Southern Saratoga YMCA has a drive to collect essential items and it makes a huge difference.
In addition to these initial gift cards, Nick’s Fight to be Healed provides gift cards each month for ongoing treatment that Angie, the clinic child life specialist, and Courtney, the social worker, hands out to families. Reducing stress is key to healing.
It takes hours of shopping, separating, copying, folding and packing these bags before they can be brought down to Albany Med. Between 70-90 bags are given to families each year. That means up to 90 children are newly diagnosed with cancer each year just in our area. We have a lot of work to support our families and we do the best we can.
Teens from Nick’s Round Table, along with their amazing leader, Annette Romano, shop and pack all these bags. It’s a daunting task, but they do it with joy on their faces, because they know how much these bags mean to families.
It takes more than medicine to heal a child. It takes love, in-hospital services, comfort, and hope. Nick’s Fight to be Healed Foundation does this and needs your help to continue.
If you would like to donate gift cards from Target or Walmart to purchase supplies for these bags or gift cards in $25 increments to Starbucks, Dunkin Donuts, Panera, or CVS, please mail them to:
NFTBHF, Family Hope Bag Program, PO Box 217, Rexford, NY 12148
If your company would like to sponsor this program, please contact Annette Romano at email@example.com
Thank you to our volunteers, our sponsors, and everyone who helps us in our mission.
My oldest son, Nick, was born after two years of trying to get pregnant and 12 hours of back-breaking natural labor on October 7, 1995. From the moment Nick was born, he was enthusiastic, warm, happy, and had a light that burned so brightly in him. His sense of humor was over the top and he was very outgoing.
Nick started swimming competitively at age 9. In January of 2008, I noticed his fatigue, but pushed it off. In June 2008, he struggled with ear infections, which wasn’t anything new, but this time a rash occurred from antibiotics or so we thought. On July 4, 2008, my healthy, exuberant son was diagnosed with T-cell Acute Lymphoblastic Leukemia. He didn’t go into remission after the first month, which started a path of the toughest chemo that ruined his body inside and out. He struggled with allergic reactions, infections, fatigue, vomiting, had to have his appendix removed and part of his colon. Everything that could have gone wrong did.
He spent most of September in the hospital in pain and all I could do was hold my baby and try to ease his pain. He turned 13 on October 7, 2008, he went into remission on October 18 and planned to get a bone marrow transplant. My birthday was on October 19, his little brother Stephen turned 11 on October 21. On October 26, 2008, Nick passed away suddenly from a spontaneous brain hemorrhage from the chemotherapy. October is a tough month for our family.
My heart cracks a bit more at this time every year. I try not to relive what my son went through, but it’s hard. Instead I think about all that Nick has done. By taking the path that he did whether or not he or his soul chose it, veered us toward a much different path than we had thought when we first had children. You don’t think you will be burying one. If Nick never had cancer, we would not have started Nick’s Fight to be Healed. Our services may not have occurred. It amazes me what Nick’s life and passing has brought to this world.
It’s a hard path. It’s sad, heartbreaking and relentless. But just when I think I’m done, that I can’t go through another day, Nick shows me someone who needs my help; he sends a light to ease my darkness. These contrasts of good and bad, dark and light, life and death. This is what living is all about. And every day he and all the other children who battle prove to me that no matter how full of despair I feel, there is always hope.
Read these stories that will be shared every day during Childhood Cancer Awareness Month. Think of our children fighting for their lives and act. Whether it’s liking or sharing a photo or post, pasting our logo that raises awareness onto your social media, sending a note or care package to a child with cancer, making a donation at http://www.fighttobehealed.org or volunteering. Do something every day in September, because each time you do, you are the one spreading hope.