My son 26 yrs old in August 2024 had been dealing with pneumonia for 2-3 months with no relief. Having taken several trips to the ER for his pneumonia, he hadn’t noticed his headache becoming constant and intense (migraine level).
With a history of migraines growing up and with the constant coughing from the pneumonia, he thought his headaches were from too much coughing and just a normal migraine. In the early morning hours of Aug 7th, 2024, he suffered a grand mal seizure in which his wife had to call the ambulance.
Upon arrival at the hospital, he felt another one come on and they gave him Keppra, they did a CT scan and saw ” a mass” and wanted to transfer him to another local hospital. Upon arrival at the new hospital, (still early morning hours), they did an MRI and it was discovered that he had a “large lemon sized” tumor on his frontal lobe.
The surgeon thought it was a meningioma. Surgery was set for Aug 9th. After the surgery, the surgeon was confident he got “all” of the tumor and he still thought it was a meningioma. After several weeks (6), and after the tumor had been sent to 4 different labs for confirmation, it was determined he had a rare tumor called Grade 3 PXA (APXA). He was scheduled to start treatment but his plate “shifted” in his head and he had to have a 2nd surgery (2nd different surgeon) to replace it, which caused a staph infection. After 6 weeks of antibiotics, he was so close to starting treatment, when he ended back up in the hospital with a migraine and vomiting. Another MRI showed “significant regrowth” and warranted a 3rd surgery. A 3rd surgeon did this new surgery and said he felt he got “all” of the tumor but that it was very aggressive and malignant. He wanted treatment to start asap. After healing for 4 weeks from the 3rd surgery my son was finally able to start treatment with entailed 30 rounds (6 weeks) of radiation along with concurrent TMZ chemotherapy pills.
His next MRI show no new growth, so the neuro-oncologist wanted to continue treatment and suggested to target the braf mutation that my son’s tumor has. Now he is on a 6 month rotation of 2 different chemo pills daily and he is doing great! The last 2 scans have not shown any new growth and we are so blessed. He continues to fight the fight against this ugly beast and we are hopeful he will continue down a positive path!! My son is my hero. He is the bravest person I know. I have seen him deal with things that even the strongest person would cry at or get angry at and he has handles all of this with such grace and courage and I just hope someday to be as brave as him.
Our lives were turned upside down on Aug 7th. You never think anything like this is ever going to affect your family. With this being our “adult” son, who is married, I had to learn to walk a different path, not only as his mom but also as the mother in law. And while I wanted to be in on all decisions and reports, I had to step back and let them make decisions as a couple. However, I will never stop fighting for my son to live the best possible and longest life he can and I will be involved in whatever way they let me and I will be a support for my son until my last dying breath or his last breath. No matter how old our kids get, they are still our kids and we still feel the need to make sure they are ok. My goal now is to focus on helping families after they receive this terrible diagnosis in any way I can. It helps me to feel useful when I can’t be helping my son, at least I can help others in a similar situation.
I learned that there are not any real support groups in our area. There are “links” on our cancer site to click on the “find support” but there isn’t really a good support group for people who are diagnosed with or have a loved one diagnosed with brain cancer, especially for parents of grown children with brain cancer.
I also learned that our area does not have any “benefits” for brain cancer. They have alot of benefits for different kinds of cancer but nothing specific for brain cancer, so finding a way to honor and support brain cancer patients in our area is a goal for me. I have found several groups on Facebook/Instagram that are support groups for people who have brain cancer or have a loved one with brain cancer with people from all over the world. Everyones experience is different but similar in ways also. It feels like a connection just to hear others stories and experiences and have that support cheering you on and grieving with those that have lost the battle.
May being brain cancer awareness month is new to me. I plan on educating my friends and family on social media about the many brain cancer facts. I am going Gray in May for my son Zachary!!
I wish people understood how it changes people. My son’s personality is different after 3 surgeries. We have to remember that he is going through alot, not just on the outside but on the inside as well, including mentally and physically. People also have to realize that the vision of what you thought your life or the life of your loved one has been changed forever. There is never a day that goes by that Brain Cancer is not on our minds. But it also can’t be the only thing about my son! He is the bravest person I know. I want people to know that there is so much more to my son Zachary than just having brain cancer. Anticipatory grief is real and raw and normal!!! We all deserve to feel what we feel! It is normal to feel scared and sad when things are bad and also blessed when things are going good.
Don’t ever feel like you are alone. Find your community. Find those support groups.
Anticipatory grief is real and raw and normal!! Feel those feelings and then move on to fighting every step of the way and never give up. Even if this beast wins the battle, know that the loved ones story continues through you. Do not take one day for granted! Hug your loved ones, take those pictures and continue to fight with your loved ones!!!
