A little background to our journey- For as long as Alex can remember he has had a large right tonsil. It never caused him problems, and he never was prone to strep throat. In November of 2017, Al got a nasty cold and went to Urgent Care. They commented on the large tonsil and prescribed an antibiotic. This was the first time Alex noticed that he couldn’t swallow the antibiotic pills. He had told me he just needed to go ahead and get a tonsillectomy and be done with it.
On February 6th, 2018, we met with an ENT doctor to discuss when Alex could have the procedure done. I was flying back and forth between Arkansas and Ohio seeing my mom, and we were trying to schedule the surgery during a week I would be home to help care for him. The ENT doctor visit provided to be interesting. He examined Alex, and remarked on the size of the tonsil. He said that tonsil sizes are usually rated on a scale of 1-4 and he would categorize Alex’s as a 6+. He even brought in a doctor buddy to check it out. We then sat down to discuss options of removal, and possible reasons for its size. He scheduled Alex to have a CT Scan done just to see how far into his throat the tonsil went so he wasn’t going into surgery “blind.” During this conversation he said worse case for the enlargement would be lymphoma, but since Alex has had the large tonsil for as long as he can remember, he’d probably be dead if it were cancer.
On February 9th, I returned to Ohio and Al had the CT Scan; which showed how big the tonsil was. Although the doctor originally said they would just biopsy the tonsil after removal, he decided to take a small portion for biopsy that day. We weren’t concerned, we just wanted the thing removed. Alex joined me in Ohio on February 12th to see my mom and on February 13th, we got a call in the hospital cafeteria.
That 15 minute conversation felt like an eternity. I thought maybe they were just scheduling the surgery, but also felt like it was still taking a long time to do that. The surgery would have to wait. The biopsy came back that Alex has Mantle Cell Lymphoma. Words that I had never heard of before. In all honesty, I wasn’t even 100% certain lymphoma meant cancer. I sat and cried as my brain processed the information we were just given. We knew absolutely nothing about it, or any other information besides the fact that he had it. We took to “doctor google” to learn all we could. This didn’t exactly calm my fears, but it did provide me with information on this type of Non Hodgkins Lymphoma. We made our phone calls, and the only step we were given by the ENT doctor was to call an oncologist he had referred him to.
The next day, Alex called the oncologist and started the process of getting an appointment. His tests were scheduled starting February 20th, and we would go from there. I kissed my momma for the last time on the 19th and went home to be with Al. Tuesday and Wednesday were long days full of tests and procedures. Thursday we met with Dr. Van Rhee (oncologist) to discuss results and treatment options. The Mantle Cell Lymphoma (MCL) diagnosis was confirmed. All the lymph nodes affected are above his diaphragm and it is in his bone barrow 5%. The cancer in the bone marrow categorizes his cancer at Stage 4. Treatment would be aggressive, but Alex was so ready.
On March 1st, Alex was admitted to the hospital for his first round of chemo. He would be there until March 7th. Next, he would receive outpatient infusions everyday until his white blood count and other variables returned to normal; which brings us to today, March 26th.
Alex has done amazing. His positive attitude is an inspiration to me. I am so grateful for the care he has received. Our family and friends continue to be the best people in the world.
I’m hoping to share our journey and post updates here. Thank you all for the continued support and prayers 💚
Alex is in remission 💚 Hearing that news last week caused a huge weight to be lifted off me. I am very grateful.
This first year, Alex will get restaged every 4 months. As of right now, our next follow up scans are scheduled for April 9th & 10th. After the first year, he will go every 6 months, I believe. The longer we go with clear scans- the more likely it is that it will never come back. The APN said with his type of cancer it usually comes back sooner rather than later. His treatment was aggressive and curing him was the goal from the get go.
My apologies to anyone that hadn't heard the good news through the grapevine. Thank you for being here and supporting Alex and me through this journey 💚 I hope everyone is having a nice holiday break with their loved ones.
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