A Little Information Helps

I cannot believe that a year has passed since I last wrote. I haven't been able to face this blog. For some reason today I felt like sitting down and getting to it. Perhaps I'm just avoiding other things that I should be doing but I hope this becomes a more frequent event.

Not a lot has really happened with a few notable exceptions. We added a key new family member in our little miniature dachshund named Buddy. Addie wanted a boy dog and wanted to name him after Jim's nickname for JR, hence Buddy. Cousin Chris & Andrea's neighbor Denis heard our story and was thrilled to give us our fun-loving and energetic little puppy and we have all been delighted with him. He's been a great addition and is the subject of Addie's blog-style newsletter named the Buddy Chronicles, complete with articles and dress-up pictures. He's accompanied us on several trips and is great company.

Addie and I went to Paris to visit my niece Lindsay who was studying over there last Spring. We spent a week last summer with our dear friends the Trepps down in the Outer Banks. We escaped Christmas with a trip to the Dominican Republic this past December and avoided the earthquake in Haiti by a mere two weeks. Addie started fourth grade and has been knocking the cover off the ball at school. Kimberly's mother survived a bizarre illness and we lost our neighbor Frank, our friend Claire and my grandmother Sue. Many more things would happen over the year and this could end up sounding like a Christmas card insert but I'd rather get back to the real subject at hand; are our hearts mending?

My first reaction to a question like this is a resounding "no" but things are a little bit different. I am not sure if this is an indication of mending but more like getting used to living with pain. Jim and I are still dazed and confused and asking ourselves "Could it really be true?" and "Why was it JR?" I remember one of the doctors telling me that about 180 cases of pediatric GBM's (glioblastoma multiforme) occur each year. The odds of that happening to JR are virtually impossible yet here we are without him. It doesn't make any sense. Our friends-in-mourning the Czechs also lost their son to a different type of brain tumor that shows up in about 150 children a year. Even more impossible but yet they are in our same predicament. How does anyone process this and make sense of it? We certainly have no clue.

About a month ago, I attended a presentation, accompanied by my BFF Kimberly, on cancer gene therapy for brain cancer. Sounds like something that would make most people run screaming but for someone in my situation, it was very informative and helped me put a few things to rest. For example, one of the first things the panel of highly-qualified experts in this field of research pointed out was that GBM's (the research disease of choice since it is so aggressive that they can attain results very quickly) are essentially 100% fatal. The standard of care can prolong life by a few months or so but there is no cure. I believe my last blog entry let you in on some of the uneasiness I have felt over my choices for medical care and some of my "If only I had tried this" worries. Knowing that there was nothing to stop JR from his horrible fate at least frees me of the guilt I feel for not finding a successful treatment program. It doesn't get him walking through the front door but unfortunately nothing I could have done would have yielded that result.

Another piece of information that I learned or perhaps confirmed was that with all the research through the past 40 years (GBM's are much more common in adults so research has forged ahead. Side note here - not 100% clear here as to whether or not the adult research is even relevant to pediatric GBM's but for the sake of argument we'll say it is) has not given anyone any information on why these tumors form. To this day, nobody has a clue. Again, so awful, but I can stop questioning every little thing I did for JR and wonder if it caused his illness. We may find out down the road that some crazy obvious lethal something or other is present in JR's room or in the brand of peanut butter that he liked but as for now, there is no known cause. Again, a little sigh of relief that I cannot blame myself repeatedly for causing JR harm but it again does not bring him back.

So where does that leave us? I think we are in a more pure form of both missing him and feeling very bad for him and how he spent the last months of his life. There are still so many unanswered questions but most of them now relate to what his experience was and how much did he suffer and what could we have done differently for him. I regret not taking his Make-A-Wish trip to Hawaii and not just totally going all-out every single day we had together. I wanted to keep things "normal" for him so that he felt secure and promised him that everything would be okay. The only thing we know for sure at this point in time is that we love our children and that will never end. I feel like there could be no-one in the world that could have more love than I do but I am sure I am in a huge subset of people on this Earth called parents. I also know that I will never get over the loss of JR. It's a proven fact amongst bereaved parents. How we handle it through the years remains a mystery but the first 19 months and 8 days has been heartbreaking. The key for me has been to make sure I have alone-time to allow my grief to happen. That and wine therapy. I have my wonderful little posse and I am so grateful.

I have so many stories to share about the amazing people that have shared with me as a result of our tragedy. I am now an absolute wealth of knowledge about people experiencing loss and each story is a gift. It is helpful to share stories. It is helpful to bring JR up in conversation. It is helpful to help someone else. Mostly, it is helpful to be around people who are not afraid to show that they try to understand and that they are remembering JR. Some of the most amazing support has come from people who didn't even know JR. In my next blog entry I will strive to relay some of these amazing stories. For now, thanks for taking the time to read my thoughts and for thinking about my son.