My son, Robbie, was diagnosed with brain cancer, GBM 4, January of 2015.
Robbie was 19 years old at the time and we were told he would probably not make it to his 20th birthday which was in June. He immediately went through a 9 hour brain surgery, chemotherapy and radiation, then another 6 hour brain surgery in June, 2 days after his 20th birthday at UF Cancer Institute. We were then sent to Moffitt and have been battling 3 more tumors for the past few years.
Thankfully, Robbie is surviving, however, we know that this type of cancer comes back. It is just a matter of when. Regardless, he is living.
The tumor, treatment and surgeries have taken a huge toll on him. He is currently 90% blind in the right eye and 70% blind in the left. He is also color blind now with basically all color gone except bright orange. I contacted a local blind school and he participated in 6 week course to teach him how to live independently blind. I noticed also that Robbie was having trouble remembering simple things and sometimes a change of attitude. You have to understand, Robbie was in college, had a job and was on his way to becoming a Zoologist. That was all taken away in 1 blink.
Does he feel bad for himself? No, the second the doctor told him he was terminal, Robbie says, “So what you’re saying is that it’s all in my head.” The doctor looked at his father and I and said again to Robbie, “Do you understand how serious this is? This is an aggressive cancer. We are fighting against the odds here.” This was the beginning of my son battling while joking and making everyone around him laugh.
We still are in constant contact with hospital staff that were impacted by Robbie’s spirit. So much so, that Robbie decided to pitch an idea to mentor other cancer patients so that they were not scared and didn’t give up. He has currently mentored around 11 patients. One particular patient is in his 60s and he told Robbie that he had all but given up because he is so old. Then, when he talked to Robbie, he decided that if Robbie could fight with such a great attitude, then so could he.
Robbie has volunteered at childhood cancer benefits and Relay for life. He never makes it about himself but rather makes it about getting people to understand that cancer patients need more then just money, a cure, and support.
If you have never had cancer, you can not possibly understand what it feels like even after you are in “remission”. My step mother has been in remission for over 15 years now. She is still petrified when she has to go for her annual cancer check up. I know her fear. We go for MRI’s on a 2 month basis now and in between the MRI’s, I am constantly worrying that the tumor is growing again. Then during the MRI, I worry that we are going to get the worst news possible which would be that they can’t do anymore and he has a few months or weeks left. This has been my fear every day, every hour for the past couple of years. Can you imagine what it is like for my son? Will he ever be able to work or be independent again? But my son doesn’t bother with worrying. He continues to lift everyone he meets and I am just truly amazed at his strength. He is currently attending 2 classes at a local state college and doing really well. He has not been released to work but we are still working towards that.
I again understand that if you have not been through this, you can not hope to even fathom what it feels like. A friend, Dave Stewart, that worked in the first hospital we were in and was actually there during his diagnosis, explained it best. The day after he watched Robbie get his life ripped out from under him, he came into work at the hospital and overheard people he worked with complaining about how someone got their coffee order wrong which made them so upset. This was the topic of great discussion for several minutes. He stopped and asked everyone to listen up. He told Robbie’s story of how he was given little to no hope and Robbie turned back around, with a laugh, and refused to give in. He told them how much we take for granted every day and that he, for one, was not going to live like that any more. He told them that if a 19 year old boy can deal with and want to fight being given cancer, that having a coffee order wrong shouldn’t even make you blink an eye. He said that moment changed his life and those around him forever. That’s all Robbie said he wishes to get from this experience. He doesn’t wish for himself. He wishes for everyone around him to live life, love, and most of all laugh.
Please take Robbie’s story and share it with any who might possibly need that lift. You can message him or follow his story on Facebook.