A few days ago a friend told me she was talking to a woman at a benefit for a young woman in our area with cancer. She was talking to the mother of the girl and this other woman. Somehow this other woman started talking about a little boy named Oliver that lived in the area and then started talking about how she disagreed with my decisions. I asked my friend what else was said, but she couldn't remember everything. She pretty much shut the lady down right away and told her that she knew us personally and that she wasn't in our situation.
So many things sprung into my mind. First, I was like... WHAT? What decisions is this woman referring to? The fact that we opted out of chemo? The fact that we didn't take him to St. Jude? That we didn't take him to see Dr. Burzinski in Texas? The fact that we were honest with him about his condition and the most likely outcome? Like... what the hell is this nut referring to? Second, I was thinking... wow... this lady has some nerve judging me for the decisions we made in regards to our son's health. Third, people are STILL judging us 5 1/2 years AFTER Oliver died?! What the freak!!
I have no regrets with regards to Oliver's health care plan. I think as parents of terminally ill children, we are constantly going back and forth in our minds wondering if our choices were the best ones we could have made, especially if they passed away. We don't need other people on the sidelines chiming in on what they would have done in the situation. Well... they aren't in my situation, and even if they had a terminally ill child, they STILL aren't in my situation. Every single child, family and situation is different. You never know how you will deal with something and what choices you would make until your life is suddenly thrown into chaos and uncertainty. We don't have a crystal ball to tell us the correct choices to make. We have to be okay with the choices that we ultimately make and not beat ourselves up about it.
So... here are a few things I just wanted to put out there...
#1 - With Oliver's type of cancer, chemo has proven time and time again that it does not help. It only decreases the quality of life. So, if he will most likely pass away, why would we make his last few months miserable? If there were viable options, you bet we'd move heaven and earth to get him the help he needed, but there wasn't and sadly, still isn't.
#2 - St. Jude does not take everyone. They have to have a trial that fits with your child's diagnosis and the child has to qualify for it. I know countless children that have been turned away. Plus, even if there was a trial... it's still a trial. Grasping for straws. If he was most likely going to pass away, why would we separate our family for the last months of his life. We focused on making memories together.
#3 - Dr. Burzinski may be able to help other people, but in nearly every case with DIPG, nothing helps. Also, keep in mind that insurance does not pay for the $300,000 treatment. So, you'd most likely be left without a child AND possibly bankrupt. We have the whole family to think about. Again, if there was a viable option - if it showed that it helped DIPG cases then yes... we would have gladly given everything we had to save him.
#4 - Every family is different with regards to what they feel about death and an afterlife. We chose early on to be up front and honest with Oliver about his diagnosis and that he would most likely pass away. We waited a while to tell him the last part. Who wants to tell a child that he is going to die? We wanted him to know that we still held out hope and that anything was possible, but that it was ultimately in God's hands. We wanted to be open with him about the afterlife. That people would be there that loved him and that he would not be alone. We didn't want him to be afraid. We wanted to keep things open so that if he was scared we could talk with him. I always wanted him to feel safe and be able to be honest with us about how he was feeling. I'm so glad we did.
Those are just a few of the big choices that we made that may not be the choices most people would have made and that's okay. We can't judge what others choose to do in such situations, especially when we don't have all the facts or share the same beliefs and emotions. It was all done in love and faith. LOVE for my sweet boy and concern for his total well being as well as for the whole family. We were and are all still in this together. FAITH that all things happen in Heavenly Father's time and FAITH that we will see Oliver again someday.
I guess my parting advice would be --- Don't judge someone based on what you *think* you would do in their situation. Don't judge someone based on what you *did* do in a similar situation. The family has enough on their plate just waking up every day and dealing with what life has thrown at them. Each situation is different. Just be kind and keep your opinions to yourself.