Birthdays are Precious Moments

I need to send a birthday shout out to Nick Rychcik who turned 10 years old today! Birthdays are the moments that our amazing children come into our lives, when siblings, cousins, nephews, nieces, and grandchildren are made. 

Can’t help but love that smile!
For a year and a half Nick has been battling cancer and I have to say he has shown bravery, courage, and a will to live his life in the way he wants. My family and I have been blessed with getting to know Nick and his entire family very well. I connect with his mom, Kelly, multiple times a week and I see Nick’s struggle and his frustration when he doesn’t feel well. 
But through all his painful treatments, side effects, uncertainty about the future, and inability to sometimes do what a 10-year-old should be doing, Nick smiles. It’s quite an infectious smile. Nick doesn’t focus on his illness, he looks forward to what he can do at school, when he gets home, or during the upcoming weekend, and further.
Nick hanging at a Shen soccer game where he was honored.
His resilience and positive attitude sustains him. His family’s strength and faith holds him up, but his courageous spirit allows him to get the most out of every single day. Isn’t that what we should all be doing? Sometimes it takes a wonderful young man to show us the way.
Nick at a Union Baseball game. He sat in the dugout with the team.
Nick, we wish you a very Happy Birthday filled with lots of love, laughter, cake and presents! Know that a community is sending you their strength and wishes for a lifetime of birthdays!

September is Childhood Cancer Awareness Month–But Every Day Children Suffer

Today starts the daily campaign for this month to raise awareness about how many children are diagnosed with cancer–90 children a year just at The Melodies Center for Childhood Cancer and Blood Disorders at Albany Medical Center.
Today we need to understand the support that each and every one of those 90 children and their family need in order to survive a cancer diagnosis. It’s emotional, financial, physical and spiritual support.
Today we push to find a cure. According to the National Cancer Institute, the most common types of cancer diagnosed in children and adolescents are leukemia, brain and central nervous system tumors, lymphoma, rhabdomyosarcoma, neuroblastoma, Wilms tumor, bone cancer, and gonadal (testicular and ovarian) germ cell tumors. 
Nick Rychcik may not be familiar with these common forms of cancer, but he knows way too much about the cancer that for the past year has turned his life upside down. 9-year-old Nick was diagnosed with Desmoplastic Small Round Cell Sarcoma in October 2013, a very rare and aggressive form of cancer. His tumor was found on September 25. In addition to the surgeries, chemotherapy, radiation, and other painful procedures, Nick is currently undergoing treatment at Sloan Kettering Memorial Hospital.
Nick Rychcik and his mom, Kelly (photo courtesy of Elizabeth Fox Photography)
Nick’s procedure is called Intraperitoneal Therapy. Anti-cancer drugs are delivered directly into the abdominal cavity and are left there to bathe the cancer. This study called I-8H9 phase 1 has only been done on 20 patients so far. Nick will feel a lot of abdominal pressure, his breathing will be faster and heaver due to the large volume of fluid. Currently, Nick is home, but the treatment has caused him to be continually sick. He goes back to Sloan tomorrow and will get his schedule for three weeks of radiation. 
The Rychcik family is one of the 90 children dealing with a similar situation of being separated from siblings, parents, and friends. Nick should be school shopping and preparing to hang out with his friends at school, but instead is battling to save his life. 
Nick’s Fight to be Healed Foundation fights for Nick and is supporting this family to help get them through this difficult time. Nick is our warrior for Nick’s Run to be Healed 5K on Sunday, September 28, 2014.  Go to www.fighttobehealed.org to find out how you can participate and support our never-ending mission.
On September 13, the Capital Region Childhood Cancer Coalition is sponsoring a September Gold Family Day. This is for every family battling cancer or wanting to support a family with cancer. There will be a ton of fun events. Please spread the word about what we do.

Everyone is invited to come to this event. Please help us make it a huge success!

Cancer Changes our Perspective

For the next few weeks, I’m going to be sharing many stories about my young friend, Nick Rychcik who is battling a rare and aggressive form of cancer. He is the warrior for this year’s Nick’s Run to be Healed 5K on Sunday, September 28. Though he may not know it, Nick is an inspiration to many.

Jason Maguire who was a friend of my Nick and is heading back to SUNY Plattsburgh for his sophomore year wanted to get more involved with the foundation. Since he loves baseball and Nick Rychcik loves baseball, I asked Jason to go shopping. He did a great job with the baseball theme and also gave Nick his baseball bat from a previous tournament. Nick, an avid Yankees fan will have to ignore the Boston Red Sox in this photo!

Jason Maguire holding the bat he gave to Nick.

My plan was to get these items and some balloons to Nick before he came home tonight after being at Sloan Kettering for a trial treatment that will hopefully beat this monster called cancer.

I stopped at the store to get some fun gifts for his four siblings.  At the checkout line I had a couple movies, a nail design set, nail polish, a board game, Lego set and a princess journal; something for everyone. A woman behind me casually said, “Someone is getting spoiled today.”

I paused and thought of the irony of this situation. I wanted to tell her that the children receiving these gifts were dealing with the constant threat of losing their sibling, but I didn’t want to sound sanctimonious. However, it made me think of people’s perceptions about what they see around them. She may have been thinking that I’m spoiling my children and they’ll grow up to be brats, while I’m thinking that these poor children have been separated from both their parents for over a week as they care for their son who had surgery. Even though their aunts, grandmother, friends and relatives have tried to fill that void, nothing can replace having your parents there when you are scared or lonely.

I thought about Nick’s parents, who worry about whether or not this treatment will work, and also fret about not being home to help their oldest daughter get back to college or school shop for their other children.

I overheard another woman in the library say how she couldn’t wait for her children to get back to school so she would have her routine back. Every parent whose child suffers with cancer wishes to have their routine back. They wish they had the chaos of not getting their house cleaned because the kids are running around making a mess.

A cancer diagnosis changes our perspective. Hopefully as people become more aware of what a family goes through their perspective will change, too. Yes, we brought some fun gifts to a family who is missing their brother, nephew, and grandchild, but they cannot be spoiled, because the fear of losing that person overshadows a lot of the joy of receiving gifts. It’s a distraction that hopefully relieves some stress.

Thank you to Jason for reaching out and helping a young boy find some joy during this tough and long journey. I hope the women who made these comments, which weren’t mean or misdirected, have a change in perspective if they ever read this blog.

Life isn’t always what we perceive and I’m thankful to be reminded of that today.