My perspective (by Abby)

My mom says writing a blog post is a great way to control your emotions. I have a lot of big emotions and feelings about what's going on with Ollie right now. I remember the day I found the bump; Ollie and I were brushing our teeth in our bathroom, when I noticed a small little red spot that seemed to be blistering on Ollie's neck. After I had found the bump, I told my parents that I found a red spot on Ollie's neck that appeared to be just a sunburn. The "sunburn" kept getting bigger and bigger and that's when we knew that it wasn't a sunburn. Before arriving at the heart breaking diagnosis, he visited countless doctors who misdiagnosed the bump as something minor, like a bacterial infection. 

When one of the doctors suggested they go for tests at CHEO, that's when I started to really worry about his situation. In school when it was time for intentions during prayer, my intention was always that Ollie's bump wouldn't be anything major. The whole time when I was thinking what the bump could be, cancer was always at the top of the list. I also remember the day we found out the diagnosis, my mom had told me that we were going to find out the results of all the tests Ollie had done at CHEO and she also said that it was likely that it would be the day that we found out the diagnosis. My dad was driving me to school, when we were in the car I said "Dad, do you think Ollie might have cancer?" my dad said, "Abby please don't say that."

I had this gut wrenching feeling that everything was not okay at school that day. I remember that I was in science class when my teacher got a call on the intercom saying that my mom was going to pick me up. I went to the office to find my mom there. Everything was quiet. I came in and she was almost finished talking to my principal and some teachers. When we went to the car, I asked my mom if she got the results back and she sighed. Then she drove to a quiet street away from the school and parked. She told me what the doctors said and about the diagnosis. When she was talking to me all I could hear were the loud thoughts inside my head about how everything wasn't going to be the same. 

When we got home Ollie was sitting there looking kind of sad. I suggested we play foosball. We played foosball and I let him win. How I wish things were still like that. 

The first two rounds of chemo went by quickly. After his second round of chemo he was home for a brief while before he spiked a high fever. He left to go back to the hospital and after a week there we got the devastating news that it was in his brain and spinal cord. He lost his sight and most of his happiness. The two months that Ollie was in the hospital felt like years. 

I had strep throat during that time so I didn't get to see Ollie and that just killed me. He was also in isolation a lot and couldn't have visitors much. After two more rounds of really tough chemo, he finally came home and two days later he  had an infection and was back in the hospital for 16 days. He then came home for 24 hours and we left for Toronto to get him a stem cell transplant. I'll write another blog post soon about my donation. 

But before he could get my stem cells, he started getting bad headaches and after tests, they found cancer in his brain again. They said the only way to put him back in remission was to take these huge pills. When we found out that if he didn't take the pills over time he would die, I felt the same way as I did when I found out he first had cancer. I bawled my eyes out and prayed as hard as I could. I sent him a video when he was in the hospital of reasons why he should live. To my relief, he took the pills, no problem. 

Curveball after curveball, our family is beating the odds and kicking cancer's butt. We're praying daily that new friends we have met at CHEO and online whose families are fighting cancer do the same. 

The Bumpy Road to Diagnosis

In August 2019 we were just your average family enjoying a warm and busy summer. One day early in August, Abby pointed out what appeared to be a round sunburn on Ollie's neck where his shoulder met his neck. We assumed that was exactly what it was, so when it appeared to become an oozing boil we took him to the pediatric clinic. The pediatrician said it was a bacterial infection (not a sunburn at all) and that it happens because we all have little bugs that live on our skin and sometimes we have a reaction. Off we went with a round of antibiotics and his suggestion to see our own pediatrician in about 10 days time for a follow-up.

So he took the antibiotics, the sore closed up and the bump appeared to reduce to a small skin-coloured bump. By the time we were able to see our own pediatrician due to vacations and such it was early September.  By then the bump had grown and had started to turn red again. Ollie's pediatrician indicated that he needed a surgical consult at the Children's Hospital of Eastern Ontario (CHEO), but was unable to determine who to refer us to immediately. In the meantime, we saw a family friend who is a naturopathic doctor to get her opinion and see if there was anything else it might be or anything else we might do to get rid of it. She identified that there was also another bump in his neck that was likely an enlarged lymph node. She advised us to seek an ear, nose and throat (ENT) surgical consult with CHEO and not to wait, but to call or email them to figure out how to get this referral soon.

I emailed CHEO and got details on how to get our pediatrician to get them the referral, then called our pediatrician's office who promptly sent the referral. Within two days we had heard back from CHEO and within 4 days of sending the referral we had an appointment in their ENT surgical clinic. They took it seriously from the start. On October 22, 2019 we had our first meeting with the head of ENT. She and another doctor felt if it was a cyst it was atypical and thought it might be Tuberculosis or a relative of TB because it appeared to be infected. They decided to order a bunch of tests and thus began a whirlwind month of tests where poor Ollie was poked and prodded every few days.

Ultrasound identified a mass and the technician and the radiologist asked if we had cats, which we do. They suspected cat scratch disease. The blood tests we had next revealed that it was not cat scratch, lyme disease, malaria or any other number of possible infectious diseases. It did reveal that Ollie had somehow had mononucleosis at some point, which apparently is more common than we imagined and had depressed his immune system. The TB test was negative, but apparently that didn't rule out other possible relatives of TB. Next we had x-rays and then an MRI with dye injected. Many tests caused anxiety for poor Ollie who hates needles in particular. Throughout it all the staff at CHEO were incredible and I was so very grateful for their patience and kindness despite Ollie's fear making their jobs more difficult.

The bump had become like an entity itself and had been comically named "Sir Skateboard" by Ollie. Given I was in full-time french training during this time for work, I found it ironic that the word bump in french is "la bosse" because it really did appear to be the boss...controlling all of us and our future.

After all this we still didn't know any more, so on November 11th instead of attending the kids' Remembrance Day Ceremony at school as usual, we were at CHEO for the biopsy of Ollie's bump. The biopsy went well and during the two minutes of silence for Remembrance Day we were in hearing from the surgeon about his findings. Although they had all suspected it was infected, there was no infection and only mass. We were told we would have results within two weeks. Thus began the agonizing waiting.

During this time I got access to Ollie's MyChart online and was able to see the reports. The Ultrasound and MRI mentioned a "slight" chance of t cell cutaneous lymphoma so I began to research that and then pray harder that it wasn't that and I was just being paranoid in thinking it fit.

On November 18 we had his post-op to check the incision, but there were no results, so we assumed that we'd hear back later in the week. By the time we got home CHEO had called and asked us to be back at 7:30 the next morning to meet with the doctor before her 7:45 surgery. She suggested Ollie wait in the vacant waiting room with his tablet and the receptionist as we talked and I knew that was not a good sign. She was very kind when she told us that it was absolutely lymphoma and suspected to be something called Anaplastic Large Cell Lymphoma (ALCL) although they were still waiting on the specific pathology reports to confirm it. She apologized profusely that she could only arrange last minute for us to see the oncologist two hours later that day (without an actual appointment so she had obviously called in a favour and when we later arrived at oncology the receptionist wasn't even aware as the doctor had arranged it directly).

So we went to the cafeteria and I pushed food around my plate as Ollie watched his tablet and Mario and I started puzzling out what we would need to do and what this would mean. We knew that no matter what he was going to get through this and failure was not an option.

This post is longer and more detailed than I intended, but so may people have asked how we got here and in the words of Mark Twain, I didn't have time to write something shorter.