It All Changed In An Instant
By Sally Steele
“There is a mass in Austin’s brain.”
There’s no going back to the “before” of that one sentence said out loud in the emergency room on January 22, 2023. My son, Austin, was only 10 months old — he’s just a baby — this cannot be happening to my baby.
Austin was our surprise baby. A very welcome and happy surprise. As older parents it was like starting completely over again in a lot of ways. Austin was a grumpy little baby until he was about 8 weeks old and then he just became the happiest little guy you’ve ever encountered. When he was 9 months old — I noticed his right eye shaking very slightly when he was eating in his high chair. I didn’t really think too much of it at the time until my husband also noticed it.
I Googled it of course, and there were a million possibilities listed as a potential cause — some more alarming than others. I brought it up at his routine doctor’s appointment a couple weeks later and she didn’t seem too concerned either, but did refer us to an ophthalmologist just to be certain. We weren’t in the ophthalmologist’s office for longer than 5 minutes before he sent us to the emergency room.
I knew right at that moment what it was, but nothing prepared me for the actual diagnosis itself, or for the aftermath of the diagnosis.
Our bodies have a kind of protection mode when something traumatic happens. It’s how we get through traumatic events without just completely shutting down or breaking. I was in some sort of fog and trying to process the doctor’s words after Austin’s actual MRI and diagnosis of an inoperable brain tumor. The neurosurgeon couldn’t be certain of the diagnosis without a biopsy and they didn’t want to do a biopsy due to the risks, but they believed Austin’s tumor to be an optic pathway/hypothalamic glioma.
I heard bits and pieces of what she was saying and it wasn’t really making any sense. She kept saying the tumor was benign, but that he would probably need to start chemotherapy immediately to try and shrink or at least stabilize the tumor. Wait — I thought chemo was used on cancer? She also said it wasn’t the biggest tumor she had ever seen but that it was very large.
How in the world does a tiny baby get such a big tumor and have no real symptoms?
Did I miss signs or symptoms? She said that these tumors typically respond well to chemo and that Austin would most likely survive. THAT was what I was waiting to hear — I needed that in order to even feel like I could breathe again. There was hope.
After that, it was a complete whirlwind in our hospital room — doctors and nurses were in and out and they were all trying to explain their role and I was trying to understand what was going on. Child Life came in and showed us how a port works and what services they provide. An endocrinologist came in and ran all sorts of labs for Austin’s baseline numbers. The oncologist came in and told us that she believed the tumor would continue growing and do extensive damage to his eyesight and potentially his hypothalamus as well if it continued to grow. She gave me handouts on various chemotherapy protocols and told us that we needed to do some research and pick which protocol we wanted Austin to start on and that he could start the following week after the port was placed inside his chest.
All of this information and decision-making was handed over to someone that knows nothing about brain tumors or childhood cancer or chemotherapy. A person that knew nothing about childhood illnesses beyond strep throat and ear infections. That person was me. The doctors were wonderful and compassionate so I don’t want it to sound like I am complaining about them, but my husband and I left the hospital with very little understanding of what our future and Austin’s future would be like moving forward. But…we had hope.
Fast forward almost exactly one year and this is what I know now…
There is really no such thing as a benign brain tumor as long as the tumor is growing, causing problems, and cannot be completely removed without recurrence. Benign in the brain tumor universe simply means that the tumor is “generally” slow growing and “generally” won’t spread within the brain as quickly as malignant tumors. This inoperable brain tumor is something that Austin will have to live with for the rest of his life. These tumors are completely unpredictable and will generally grow on and off until adulthood. They wreak absolute havoc inside the brain, where there is very little real estate available for tumors the size of golf balls to reside — much less continue to grow. There are so many vital functions these tumors can and will affect — we won’t even know the ultimate damage to Austin’s growing brain or his vision for decades. And we can also add on to that the potential decades worth of chemotherapy and how devastating that will be on a young brain and body. Yes, he can survive this but some kids don’t. Most that do survive, will have lifelong reminders of this terrible “benign” brain tumor.
Grief doesn’t just happen when someone dies or when someone leaves. I may not be grieving the loss of my child after diagnosis, but I am grieving the life I envisioned for my child. Austin’s life will be completely different than the mental pictures I had for him growing up. He might be blind, he might never drive a car, he might have learning disabilities, he might need tumor debulking surgeries, he might need hormone replacement therapies or feeding tubes…the scary possibilities are endless and overwhelming.
The stages of grief are very much alive and well during a childhood cancer diagnosis and the same rules apply — I don’t go through the stages of grief in one particular order and then complete them. I go through them all constantly and sometimes quite rapidly. The stages are shock, denial, anger, bargaining, depression and testing, and acceptance. I go weeks feeling like I have accepted Austin’s diagnosis and then suddenly I’m right back in the anger or the depression stage. Grief comes in waves and I just have to ride them out until I get to the next one and just hope it’s a better or easier wave to ride.
This one always sounds selfish, but I think it’s an important one because we are all human beings and we are allowed to have feelings. I am grieving for me too. I grieve for my career that I gave up in order to get Austin to chemo and other doctor appointments every week and to keep him healthy during treatment, I grieve the loss of identity and friends that I once had, I grieve the life I envisioned for me and my husband as we got older, I grieve the luxuries we had when my husband and I both worked outside of the home, I grieve for my independence, I grieve for my other children because their lives will also forever be different.
No one can understand what I am going through unless they have been in a similar situation themselves and I realized how important it is to find those people quickly. It doesn’t have to be the same diagnosis — it just has to be a life changing event that gives them the ability to empathize. I will never be the person I was before this diagnosis and the things that mattered or seemed so important before just seem so trivial now. I found that the people that I assumed would be there for me just can’t be there for me anymore. They haven’t really changed — it’s me who has changed and maybe that’s OK.
I have found some silver linings through all of the tough times. I have met some truly amazing families and have witnessed so many brave children along this journey. I have gotten to spend invaluable time with my own children that I would have never gotten to otherwise. I have learned what is most important in life and I certainly have a deeper understanding for anyone going through tough times — whether it be financially, emotionally, or medically.
Lastly, I have gotten the opportunity to meet and truly get to know my own hero. I have learned a lot about resilience and strength over the past 12 months. Austin is the strongest person I have ever met and he’s not even two years old yet. He has no idea what’s going on of course, and I am sure there will be lots of questions one day, but for now he handles all the pokes, prodding, needles, doctor and hospital visits, and medicine with a smile on his face. We could all probably learn a thing or two from the youngest of warriors.
