Ben Brewer

Wednesday, 12 August 2009 17:46

 

Our sweet little two-and-a-half year old son, Ben, appeared to be happy and healthy back in the beginning of 2004. He loved his trains, videos, day care friends – everything was “normal” in his life. Ben began to have low-grade fevers, a constant runny nose, and some occasional issues with limping. What appeared to be “the average virus that wouldn’t go away” turned in to the most heartbreaking news: Our Ben had Neuroblastoma.

Ben’s exact diagnosis was Neuroblastoma, Stage IV, high risk, unfavorable tumor, with the n-myc gene non-amplified. His primary tumor was located on his left adrenal gland. His bones and bone marrow were highly infiltrated with disease as well.

We were admitted to Children’s Hospital in Columbus, Ohio, under the care of Dr. Nick Yeager in February, 2004. Ben was placed on Protocol A-3973 for treating high risk Neuroblastoma. We learned that Ben would have to endure six rounds of aggressive chemotherapy, surgery to resect his primary tumor, an autologous stem-cell transplant, radiation therapy, and a six-month course of 13 cis-retinoic acid (Accutane). Also, part of the A-3973 Protocol included a randomized study of ch14.18, which is an antibody therapy that has shown some promise of keeping children in remission from this dreadful disease. Ben was randomized to receive five rounds of this treatment, which he completed March, 2005. Ben was declared NED (no evidence of disease) in June, 2005, had his broviac catheter removed two days after his fourth birthday, and has remained NED since then!

Since Ben has finished treatment and he’s remained NED, we were comfortable with Matt accepting a job in Denver. We moved to Colorado (Aurora) in June, 2006. Ben’s care has been transferred to Dr. Brian Greffe at The Children’s Hospital in Denver. Ben has graduated from having scans every three months to every six months. While I’m sure this is a relief for Ben, I still have anxiety revolving around scan time. If it were up to me, I’d scan him constantly. What we do know about Neuroblastoma is that it has an extremely high relapse rate. If it does happen to come back, it is usually very aggressive and extremely resistant to treatment. So, we are constantly praying for Ben to maintain his glorious NED status!

It is hard to believe that we are coming up on the four year anniversary of his diagnosis. Our sweet little boy has been so incredibly brave and has been enjoying his time being a “normal” boy. He fought like a champion and endured so many horrible treatments – he deserves nothing but smooth sailing from here on out.

I am praying that this will be all the treatment Ben will ever have to endure. He has taken it all in stride and continues to face each day with a strength that is astounding. Words cannot express what I feel for my son. I am proud. I am amazed. I am his constant pupil in all matters of character. I love this little guy with all I am. My son fought a most dreadful cancer that can only be described as relentless. Thankfully, there have been some children who have won this fight against Neuroblastoma. I believe Ben will be one of them. He just has to be.