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.