Dax’s story began towards the end of April 2020, when his parents noticed the shells of his ears were crimson red. His Fitbit was reading an accelerated heartbeat of 130 beats per minute, but his blood pressure was extremely low. With the COVID precautions in place, they had a virtual appointment with their family doctor, but he had no answers for them. Dax was prescribed antibiotics and told to wait four or five days to see if any changes occurred.
That lasted two days. At 2 am the morning of May 9th, 2020, Dax woke up with his face completely swollen, crimson in colour, and having difficulty breathing. His mom took him to Leamington hospital, but while they waited, Dax’s body and face continued to swell. After x-rays, the doctor believed that Dax had pneumonia and sent him by ambulance to Met Hospital in Windsor – by himself. Because of COVID, his mom was not allowed to go with him.
In Windsor, Dax was seen by another doctor, who recognised that he had Superior Vena Cava (SVC) syndrome and a tumour in his chest that was crushing his SVC. This is what was causing the swelling and discolouration in Dax’s upper body. The race was now on to get Dax the help he needed, but that was two hours away in London.
Once again, Dax had to be rushed by ambulance, by himself, this time all the way to London.
By the time he arrived, Dax was having extreme difficulty breathing, even with the oxygen he was being given. The swelling hadn’t stopped; his body continued to increase in size.
His mom recalls, “While talking with the doctors, we were informed that Dax was extremely ill and they weren’t sure if he would make it through the night. They inserted a tube into Dax’s lungs and another into his heart while he was awake. They didn't think that he would have any strength to come out of sedation.” So, with local freezing, Dax watched the doctors perform the procedure while awake.
Right away, they started giving Dax steroids to help shrink the tumour.
“Dax was by himself for all of these things,” says his mom. “We were not allowed to be by his side or hold his hand due to COVID. Dan and I were allowed to be together in the waiting room of the ICCU, only because no one knew if Dax would be strong enough to make it through the night.”
Dax did make it through the night. The next challenge was to truly find out what was happening.
The doctors ran a variety of different tests, lumbar punctures, and CT scans – all while Dax was awake – trying to figure out what they were up against. Because of the amount of fluid in his lungs and heart, Dax was unable to lie flat during any of these procedures; just over six litres came out of his lungs and almost one litre from his heart. It took four days before the doctors were confident enough to sedate Dax for the first time so that his bone marrow could be tested.
On May 13th, Dax was diagnosed with Stage 3 T-Cell Lymphoblastic Lymphoma Non-Hodgkin’s. It is an aggressive cancer and his treatment will last for 2½ years.
On May 15th, Dax was finally able to get a PICC line in his right arm; a port was not feasible because of the swelling in his chest and arms, and the blood clots that had developed in his entire upper body because of that swelling. Dax received his first lumbar puncture on May 15th; this caused a brain bleed because he could not lie flat. Blood thinners had to be stopped so that the bleeding was minimized.
Treatments continued on until the end of June when Dax’s body began to swell up again. This time it was because of all the blood clots, and Dax was transferred to Sick Kids in Toronto.
“Dax was the first child to have his veins ‘Roto Rootered’ to break up the clots,” explains his mom. “There is thinning of the veins and some damage to Dax’s veins which is why he can’t have a port. The doctors were worried that removing his PICC line and putting in a port could cause more damage and clotting in his SVC.”
Dax had the regular ups and downs during his first year of treatment – fevers, neutropenia, and the need for blood and platelet transfusions. Then he developed a rare blood infection called Rothia, which started from a mouth sore caused by his chemotherapy. This, in turn, led to fungus in his lungs and to Dax being hospitalized over Christmas and for most of the month of January.
Because his body is not sustaining his blood counts, Dax has been unable to remain on full doses of his oral chemotherapy; he is currently at 75%. He is also now having issues with his liver; the family is waiting for a liver biopsy to determine what is wrong.
At one year into treatment, Dax had amassed 1,888 Beads of Courage, one for each of the treatments and challenges he had gone through in that year.
“We are now 13 months into his 30 months of treatment and feel that we are making headway,” says his mom. “We have appreciated all the food vouchers, hotel discounts and gas cards for all the traveling back and forth that we have had to do. There are so many people who have reached out to us and given their support. It’s amazing, the help and guidance, a true blessing.”