What I wish I knew before my son was diagnosed with brain cancer…
On July 27, 2011, after fifteen days, three hospitals, a CT scan, medically induced coma, intubation, an MRI, a spinal tap, a craniotomy… we received the diagnosis: Brain cancer ~ Gliomatosis Cerebri with Anaplastic characteristics. Gliomatosis Cerebri = a rare brain cancer that is highly aggressive and very resistant to treatment. These malignancies are not lumps like other tumors, but cancerous threads that spread very quickly and infiltrate deep into the surrounding brain tissue, or into multiple parts of the brain simultaneously, making them very difficult to remove with surgery or treat with radiation. Gliomatosis cerebri is extremely rare, with fewer than 100 cases diagnosed in the United States each year. Anaplastic = A term used to describe cancer cells that divide rapidly and have little or no resemblance to normal cells. And the prognosis = 6 months to a year.
One year and four days from that day, my beautiful, energetic, full of life, silly, fun, compassionate, loving 8-year-old little boy was gone. At that point all of that medical jargon really didn’t matter anymore. The 12 months of searching for a cure, trying everything that we came across that we thought might help him even a little bit, traveling across the world to Germany for one final attempt at a cure… none of that mattered.
On Tuesday, he should be turning 10 but instead on Tuesday, it will be 20 months since he went to heaven. Before he was diagnosed with brain cancer, I wish I had known he would never be 10… not even 9…
I wish I knew the value of every moment of every day and how we should have taken advantage of that before and after he was diagnosed. We did celebrate him and share him and our journey with the world… or at least as far as our world reached. But we also spent a ton of time trying to save him. That’s what a mother does, right? We are supposed to protect our children and make it all better… no matter what. I can’t imagine doing it any other way but at times wish we had. I might trade some of the time it took to get him to take his many pills, which included many natural supplements, with some cuddle time (although he took them like a champ). I might play a game instead of trying to get him to drink his “green drink” or eat his Budwig protocol concoction (not so much a champ with those). I might keep him in the comfort of his own home surrounded by his friends and family instead of flying him to Germany because I just couldn’t give up hope that there was a cure out there. Or maybe if given a do-over, I would do it all the exact same way because how can you not do everything you possibly can to try to save your baby? They say hindsight is 20/20 but I’m no clearer now on what happened, or why it did, than I was on July 27, 2011. In fact, I feel more lost than ever. I wish I knew that I would go in circles over things like this and that as soon as I was comfortable with the decisions we made, I would start all over again with questioning everything we did.
I wish I knew how others would deal with my grief. It is true that you find out a lot about people when you go through something like this. It is truly shocking who is there through it all and who disappears. In your greatest hour of need they just disappear… Some people that you never thought would be there, step up to the plate and some people that you expect to be there, just aren’t. We make them feel uncomfortable, they think we need to move on or they just don’t realize how much we still need the support. I am sure I’m guilty of this because I didn’t always know how it feels. And even now that I have faced the worst thing that could happen, I don’t always know what to say to other moms in my position. Through this you definitely see true colors… it is eye-opening and somewhat freeing. I wish I had known.
I wish I knew that people would avoid talking about him. That it would feel awkward to talk about him in front of some and that I would have a need to seek out those who would listen and equally enjoy hearing his name. I wish I knew that most people who will ask how you’re doing won’t really want the truth… especially if it’s more than six months out. I wish I knew I would have to work daily to keep his memory alive, to continue parenting him, to develop my new relationship with him and his with the rest of the world.
I wish I knew that I would start grieving the moment I was told he would die. I lived every day inside a dichotomy… The hope of finding a cure vs. knowing the statistics and that we were facing his death. There is nothing more confusing, nothing more exhausting, nothing more devastating, Decisions to be made every single day about his care, his quality of life, what’s important, what’s not, what will help, what won’t, when should I stop working, when should I stop trying so hard and just enjoy the days we have left. And that was just for Jacob… In the mix of all that you also have other children to consider and make choices for, not only in their every day lives but in how all of this affects them.
I wish I had known what to expect from this beast of a disease: how things would change so quickly after months of “stability”, how much time we had left when we decided to go to Germany, and what the end would look like, because that is what I was seeing after a week in Germany – the beginning of the end. I wish I knew how much having this awful disease eating at his brain would take from him… before it took his life.
I wish I knew how this experience of fighting for my son life’s and then losing him would change me forever. Brain cancer alone is not something you go through and come out of on the other side unchanged… Brain cancer resulting in the loss of your child means a part of you dies with them.
To this day, I wish I knew what was going on in that beautiful little mind of his. What did he know, what did he understand… especially in those last days and hours. I wish I knew… I wish he could tell me.
“It has been said, ‘time heals all wounds.’ I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone.” ― Rose Kennedy