Rough start to the year…

Hi everyone!

We have been extremely busy the last 6 months or so, getting ready for school this coming September, and dealing with some health issues… As a result, we have been very bad at keeping up to date here, but an update is finally here!

Noah went for a extended stay for therapy at CORE in Florida this past January. The plan was to stay for 3 weeks, perhaps visit Walt Disney World, escape from the cold… It was a good plan! Unfortunately, after 5 days of therapy, Noah developed a fever, had chills and mom decided to take him to emergency. Noah was immediately admitted and several tests conducted (bloodwork, X-rays, ultrasound, MRI…), trying to determine the cause. Severe swelling was seen on his left leg also, which narrowed down the area of concern. All this while dealing with the uncertainty if my insurance would cover those costs. We were constantly on the phone with the insurance company, making sure we were OK to proceed with the next set of tests. I can only imagine how hard it must be for Americans who have to base their health care decisions on money rather than what is needed…

After a couple of days, we heard terrible news: Noah either had osteomyelitis or possibly Cancer in his lower extremities… Our hearts sank… I was in Toronto, mom was alone with Noah, and the prospect of Cancer coming back for a third time was terrifying to us.

I immediately booked a flight the next day to come down and prepare for the worst case scenario. The insurance company was already making plans for a medical transport back to Canada and mom and I were on the verge of a nervous breakdown. We honestly didn’t know if we could go through it all again, physically and mentally…

Thankfully the picture became clearer after more specialists reviewed the results, including our Oncology team at SickKids and the Oncology staff at Arnold Palmer Hospital for Children (who, by the way, were the most amazing part of these terrible circumstances… Their level of care for us and Noah was unbelievable). This was not Cancer, and most likely a muscle or bone infection (osteomyelitis). We started treatment (antibiotics) immediately.

We decided to stay a few more days to see if Noah would get better (he started getting better immediately after the first day as in-patient) and if we could salvage any of the rehab time we had planned, but the swelling did not go down fast enough and we were concerned there might be weakness in the bone that would prevent the level of intensity required for PT at CORE. So we came home.

After getting home and having challenges with SickKids on the next steps, Noah was examined again after a month and multiple stress fractures were discovered on both his legs, as well as possible infection focii on his tibia bones. He would need a prolonged stay (2.5 weeks) at SickKids while the doctors determined the treatment options. He ended up getting IV antibiotics for that time and switched to oral antibiotics, which he is still taking today, to treat a potentially chronic bone infection.

To this day, doctors are not 100% sure if he only had the fractures or if he has an infection. The treatment is being conducted as a precaution. To treat his weak bones, Noah also received his first dose of Zoledronic Acid via IV, which is meant to help his bones absorb extra calcium, in the hopes of strengthening them. The next IV session will be mid May and he will be re-assessed with X-ray and MRIs for that and the “possible infection”.

This brings us full circle to the title of this post; As you can tell, it has not been an easy start to the year, but in hindsight I am glad it was not Cancer, and that we are dealing with something manageable, albeit difficult. As most parents of children who are Cancer survivors will know, you just can never fully relax when it comes to your child’s health, and your mind automatically races through the possibilities and inevitably struggles with the worst case scenario. We just never let our guards down, for better or worse… it is a cross we all must learn to bear, a permanent weight on our shoulders.

Noah has been an absolute hero through all of this, dealing with multiple pokes, examinations, MRIs with no sedation, prolonged stays at hospitals… He just has the best attitude we could ever hope for, and is a big reason why we are able to handle these situations. He really is a special person.

Noah has been learning or perfecting his hand tricycle, his orange track car and his wheelchair, and as the weather gets better he is also getting to spend more time outside.

We were even able to visit DisneyWorld for a couple of days!

 

Noah on his tricycle!