By now, you’re probably aware that September is Childhood Cancer Awareness month.  It’s nice to know the desperate need for more research funding is being promoted all of over the country this month.  It’s also great to see how many people, including well-known people and places, are jumping on board with “going gold.”  Since awareness only, won’t get the job done, I sincerely hope the awareness campaigns are successful and raise billions for research.

If you’re a cancer parent, childhood cancer is something you live everyday, so awareness and research are probably near and dear to your heart.  Who is with me when I say, I would give ANY amount of money to not have to see our children suffer?  I’m willing to bet you’d give whatever it took, even if it was your arms or legs, to make your child or grandchild better and see them live a long, healthy life.

Amongst all of the gold profile pictures and ribbons, I can’t help but reflect on the children and their families we’ve witnessed travel their own journey over the past year and a half.  Prior to my son’s cancer diagnosis, I had no idea how many types of childhood cancer there were.  Shame on me for assuming cancer was just cancer.  My life has been forever changed by what I’ve learned and witnessed.

When my son was diagnosed with low-risk A.L.L. leukemia, I remember hearing someone say, “If your child is going to have cancer, then that’s the kind you want them to have.”  At first, I remember thinking, “How can you say that to me right now? Why would you want any child to have cancer?”  But, I now understand they said it to help me feel better about the situation and because the survival rate is 90-94%.  Without years of research, though, his survival rate would be 4% just as it was in 1962.  As thankful as I am for my son’s expected survival rate, I am reminded daily how many parents don’t receive those type of odds when the doctors explain their child’s cancer diagnosis to them.

Today, I want to tell you about a 6-year old little boy named Jaxon.  Jaxon and his family were living at the Ronald McDonald House in Memphis, TN, at the same time our family was there. I’m a people watcher…So, I vividly remember the first time I saw Jaxon playing catch in his bright green “Team Jaxon t-shirt” with his dad.  I thought to myself, “That little boy is adorable and seems so healthy, energetic and athletic.  I better remember his name because someday he’ll probably be giving his testimony on a major league ballfield!”  I could tell he had a deep love for baseball and seemed unusually well-coordinated and focused at his young age.  I knew he was destined for greatness!  As an outsider, looking in, I couldn’t tell why Jaxon was at St. Jude.  I knew he wasn’t fighting leukemia because I never saw him at our clinic and he didn’t seem to be on any low bacteria diet or loosing his hair, so I often wondered why he was there.

I’ve since talked to Jaxon’s mom a few times via Facebook, but to this day, I wish I had struck up a conversation with her and gotten to know their family better while we were living in Memphis.  But, between the stress and worry of caring for my own son, my shyness and my fear of seeming nosey, I never said a word.  I just watched and enjoyed seeing Jaxon play with his father and little brother.

At that point in time, my son’s energy level was low and his blood counts made it dangerous for him to play with other kids while we were living there.  So, my son would watch Jaxon and his dad play baseball (or basketball) everyday from our 2nd floor window, wishing he could go play.  I know had my son been feeling better, he and Jaxon would have become friends.

After we were released to go home, I often thought about Jaxon and his family and wondered how things were going.  Thankfully, I was able to find their Facebook page (Homeruns for Team Jaxon), but I was quickly saddened when I saw how things were progressing.

Has anyone ever heard of D.I.P.G. ?  It stands for Diffuse Intrinsic Pontine Glioma.  DIPG is a type of tumor that starts in the brain stem, the part of the brain just above the back of the neck and connected to the spine. The brain stem controls breathing, heart rate and the nerves and muscles that help us see, hear, walk, talk and eat.  The main issue with DIPG is that most of these tumors are not classified by grade because surgery to obtain tissue by biopsy or to remove the tumor is not safe because of the location of the tumor.  Although a combination of radiation and chemotherapy can be used as a temporary response, there is no cure for DIPG.  Please let that sink in…NO CURE.  As a parent, I can only imagine how difficult it was to hear and accept this news.

I continued to follow Jaxon’s page, hoping and praying for a miracle.  As an outsider, looking in, what I witnessed was absolutely heartbreaking and has forever changed the way I view childhood cancer.  As his family shared on their page yesterday, ” DIPG is a monster that steals your child little by little and day by day takes away the ability to walk, talk, eat, swallow, etc.”

Obviously, I am thankful for the research that has increased the childhood leukemia survival rates over the years.  But, that research is just the tip of the iceberg.  No parent should have to hear, “0% survival rate”.  It’s because of Jaxon’s legacy that I won’t ever be satisfied with a high cure rate for “some” childhood cancers.  I will fight for awareness and raise funds the best way I know how until every childhood cancer has a cure.

I wish to send a big hug and special thanks to Salena, Jaxon’s mother, for allowing me to use their precious picture and write about something that’s been on my heart for a long time.  Sadly, Jaxon lost his battle on October 31, 2014.  I remember calling my husband in tears that day to tell him the news of his passing.  Although we never had the opportunity of personally getting to know this awesome kid and his family, their journey sure made a big impact on us.  Jaxon, you’ll always be remembered and never forgotten by our family!