Journey to a healthy heart and an unexpected turn

So much has happened over the past month. On the morning of Mason’s pre-op appointment, October 31st, I received a call from Mason’s hematologist. She said she had the results of Mason’s bone marrow test and that Tim and I needed to come in to go over the results. I told her that we would be at the hospital all day for his pre-op appointment so we would rather not have to come in. But, she said it’s urgent and needs to speak to us in person. I immediately knew. I started crying to Tim and telling him my worries about Leukemia. I tearfully called my dad and asked him to come watch Mason so we could go to the hospital and talked to the doctor.

We were told that Mason had pre-Leukemia. Mason’s cancer cells take up about 15% (now up to 20%) of his blood. Anything 25% and higher is considered Leukemia. Anything under 25% is considered pre-Leukemia. But, it’s treated the exact same way- 6 rounds of chemo. With each round most kids are hospitalized for 28 days. But, kids with Down syndrome bounce back quicker so his doctor anticipates us being in the hospital for only 21 days. Then, she tries to give families a week at home, before starting the next round. After 6 rounds, he should be in remission. Then after 5 years cancer-free, he will be considered cured.


After meeting with the hematologist, we picked up Mason and then proceeded to his pre-op appointment. Labs were taken and showed that his platelets were the lowest they have ever been. So, instead of being admitted Monday morning before surgery, we were admitted Saturday morning so Mason could receive some platelet transfusions. It was a very long weekend and I won’t bore you with details of how nurses couldn’t get an IV in, so his platelets weren’t even transfused until Monday morning anyways. But, at least we got familiar with the hospital and were able to meet his team of doctors multiple times before surgery.

On Monday, November 3rd, Mason had open heart surgery. The surgery went well and Mason’s heart was healed, with an exception of a small hole that was too risky to repair. The hole was too close to the electric line that runs through the heart to make it beat. If the line is snipped, then Mason would need a permanent pacemaker. So, Mason still has a ventricular septal defect which could make his oxygen levels lower than if he had a completely healed heart. But, it shouldn’t require another surgery and really did not seem too concerning to the doctors. Monday evening we were able to finally see Mason!

nov 3

Mason did pretty well after surgery but gave us a big scare in the middle of the night on Monday. His heart got very swollen which bothered the electric line in the heart. Therefore, the top half of his heart stopped talking to the bottom half. His heart rate plummeted but thankfully his nurse was very fast acting and placed him on a pacemaker immediately. We were also very thankful for Mason’s amazing surgeon, who placed the pacing wires in just in case he should need them. Once Mason was placed on the pacemaker, he began to recover quicker than expected. He was even extubated on Tuesday. It was so great to see him off the ventilator!

Nov 4

On Wednesday, there was talk of me being able to hold Mason. I couldn’t wait! But something just wasn’t quite right. Mason had trouble breathing all day. His oxygen had to be upped from 2 litres to 12 litres. That night, they tried pumping him with nitric oxide to expand his blood vessels, hoping that would allow for a higher oxygen saturation. But despite their efforts, his oxygen saturation levels continued to plummet. They went down to a dangerously low amount and at about that same time, his blood pressure and heart rate dropped. Mason was coding and we were told to leave the room. Again, we were blessed with a very fast acting nurse who immediately rushed to Mason’s side and called for help. Doctors and nurses did chest compressions, pushed epi, and re-intubated him. Mason began to stabalize and a chest x-ray was taken. The x-ray revealed fluid in and around Mason’s right lung. A chest tube was placed in his side to drain the fluid. Although Mason’s body was showing all the signs that he was ready to be extubated, he really wasn’t ready. Mason remained sedated for the next three days.

after coding

I truly believe that Mason coding was God intervening on Mason’s behalf. He knew what Mason’s body needed to recover, and that was rest. On Friday, though still sedated, Mason was able to come off the pacemaker. His heart was beating on its own much earlier than expected! What a huge step forward this was after taking such a giant step back. Then, on Saturday, another huge step forward was taken- Mason woke up AND I was able to hold him! I can’t tell you how encouraging it was to see those sweet eyes and how amazing it was to hold my baby in my arms again!

eyes open

hold mason

Through the next week Mason’s body began to heal. He had withdrawals from morphine which resulted in some insomnia. But, it was nothing that a little medicine couldn’t fix. Slowly, tube by tube was removed, and our little boy was coming back to us! On Friday, Nov 14th, Mason had surgery to have a central line placed in his chest. This line can be hooked into IV’s and is how Mason will receive his chemo. After the surgery, Mason had some trouble breathing on his own, so we were kept in the hospital for another few days. Finally, Sunday evening, on Novemeber 16th, we were able to go home!


We were able to spend a week at home, before returning to the hospital yesterday, Nov 24th, to start our chemo journey. I can’t tell you how amazingly faithful God was turning Mason’s heart surgery. We were blessed with an amazing surgeon who is not only the best at what he does, but who truly cared about Mason. He was incredibly kind, understanding, and comforting. He visited Mason almost daily, even on his days off, and took time to talk with us and play with Mason. We were also blessed with some great nurses who responded quickly when Mason’s body was failing him. We have been blown away by the support and care we’ve received from friends, family, and people we have never met before. We feel so loved and supported. This has not been an easy journey, and we have a very long road ahead. But, we feel so strong with all of you behind us. From the bottom of our hearts, thank you to everyone for all that you have done and are doing. It means more to us than you can ever know.

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