Day Two

I think I was numb at this point. It was so hard to see Bash with a million tubes in him, just lying there, so fragile. I was worrying all the time, not just as a mom but as a nurse, and judging his care every step of the way. I questioned whether it would be safe to transfer him to Calgary, and we worried that we had little family there, and that if we stayed we would have so much family to support us in Saskatoon. I was also on edge with everything the PICU was doing to him - I had felt from the moment we got there that they were doing their best, but I knew the type of care he would receive at the Children's Hospital in Calgary was second to none, as this is my home base - I have worked in pediatrics there for two years. 

At 8am we suited up to check on Sebastian, he was on isolation to protect him from outside germs, so anyone coming in his room had to wear a gown, gloves, and mask. He was so puffy, his eyelids were bulging and his limbs were tight to touch - they had fluid overloaded him. At 9am the doctors rounded and they set a plan to stop dialysis as it was not needed any longer (hemoglobin - 68, and platelets - 42) were at good levels now. They notice now that they had not accounted for food and medicine intake overnight and fluid overloaded him by 1200ml. The plan for the day is to get his fluids down, as his oxygen demands had now gone way up - he needs 60% oxygen. At 1pm we met with the oncologist again - white count is still hovering around 400k. Sebastian may be able to transport in 1-2 weeks. The doctor requests permission from us to do a bone marrow and spinal fluid sample, send them to Calgary for testing, then wait for results to decide the treatment plan. Again this could be a few days as the courier doesn't operate over the holiday. We tell them again we would like to move him to Calgary as soon as possible.  I have started contacting my connections at the Children's hospital by this point, to help get the ball rolling and let them know we are serious about a transfer. At 2pm an ultrasound tech comes to verify central line placement and finds a blood clot in Bash's right leg. He's given blood thinners to help dissolve it and will need this treatment for the next 3 months.  Our oncologist now starts getting contacted by Calgary we think, as he pulls us aside and asks that we let them handle the 'footwork' and that there is a meeting planned for the following day with Sick kids in Toronto, and Calgary Children's to decide what will be best for Bash. At 4pm Nathan's family "drops off a few sandwiches" for dinner - 30+ cousins, aunts, and family show up! So much support and love, lots of tears, and many prayers to help us get through this. 

Day One

This was the worst day of my life. I have never felt so helpless, so overwhelmed, or so much heartache all at once. It was a horrible, ugly day. I'll try to keep it short.

To recap, at approx. 3am Dec 31st we received info that Bash's white blood cell count was 520k, and he may have cancer - most likely Leukemia. We were admitted to the PICU right away. (Blood counts are: white = 520k, hemoglobin = 42, platelets =16 for those wondering). Lab had difficulty completing tests as his blood was so thick (molasses, or sludge were terms used).

At approx. 5am peripheral IV lines are put into both Bash's arms (3 attempts to put in his feet failed). A catheter was inserted (it took them 4 horrifying attempts!!). They did an X-Ray of his chest to check his lungs, which came back clear. We spoke with the air transport team about air lifting us to the Alberta Children's Hospital in Calgary, but the PICU doctors said he was not stable enough for travel. He was given a dose of 'Respiritan' to stop his body from breaking down white blood cells (this would have produced potassium and uric acid causing possible cardiac arrest). At 8am Sebastian was sedated and femoral central lines put in each side of his groin. He was fighting the sedation and having a hard time breathing so he was intubated. We called our families to break the news about the diagnosis. Everyone was devastated. At 10am Bash was given two units of blood and started on a dialysis machine to help protect his kidneys from damage, and to help clear his blood of toxins. At 11am we met with an oncologist and the PICU doctor. We were told that it may be 2-4 weeks before Bash is stable enough for transport to Calgary. The oncologist said early testing showed lymphoblasts in the blood and they were waiting on confirmation of the type of Leukemia. Goals were getting his white count down to safe levels. (Need to be closer to 50k before chemotherapy can begin safely). We confirm getting to Calgary is a priority for us. At 12pm Nathan's parents go home to pack us bags, and we setup living space in the PICU family room and try to sleep on couches. At 5pm we met again with the oncologist with an update on results. He confirms Bash has B-cell Acute Lymphoblastic Leukemia. He will need bone marrow and spinal fluid samples taken for more testing and the samples needed to be sent to Calgary as they don't have the equipment to test in Saskatoon. Due to the holiday a courier was not able to transport samples until Jan 2nd or 3rd… and they will need to keep Sebastian sedated until these tests are completed. We ask again about moving to Calgary, and are told he's not stable enough to safely do this. White blood cell count is at 440k now thanks to the dialysis and steroid meds they started. Bash is given 2 more units of blood to get his platelets and hemoglobin to normal levels.  At 10pm the dialysis machine started having trouble moving the thick blood through it. More fluids were given to try to thin out his blood. I worried about him getting fluid overloaded from everything they were giving. We were more than exhausted at this point and tried to sleep on the family room couches.

The Day Our Lives Changed Forever

Where do I even begin? Cancer - It's knocked the wind right out of me. My sweet baby boy forced to battle something so early on in his precious life seems so unfair. But, here we are, and battle it we will.

December 30th started out pretty early for us, as our son Sebastian was having trouble sleeping.  He seemed to be having some gas pain (not unusual for him), and in the wee hours of the morning, we brought him into our bed to try to get him to settle. I rubbed his belly which always seems to help, but he was hard to get back to sleep. Once up for the day he seemed his normal, happy, curious self and we never thought anything of it. We were at my parents place for the holidays and that day we headed from Regina back to Saskatoon to Nathan's parents place. He travelled really well, slept halfway there, and then just chilled and played with his toys, never making a peep the rest of the way. That evening Bash seemed pretty fussy so we bathed him and got him into bed around 7pm. He woke only 45 minutes later and was very unsettled. He seemed to be having bad gas pain again, but nothing I did calmed him back down. I decided to change him as I thought maybe his clothing was too hot or he already had a wet diaper, thats when I noticed his abdomen was hard, but only on his left side. That seemed very odd to me as it was not noticeable that morning, and being a nurse I knew something wasn't right. I called Health Link right away. Health link recommended we go to Emergency to get him checked out, so we piled into the car and headed to the Saskatoon Royal University Hospital. Bash seemed to settle down while we waited and flashed his smile at everyone. The doctor finally came and assessed him, they took his blood, and they put in a catheter to get a urine sample. Around 3am, after what seemed like eons waiting, a couple doctors came to the bedside and asked us to come to a quieter area to talk. My heart sank. At that very moment I knew I was about to hear terrible news. They said we are sorry, but it looks like your son has Leukemia. We were devastated. That was the farthest diagnosis we could have imagined him having. They gave us some time alone and then hastily whisked us up to the Pediatric Intensive Care Unit as Sebastian's status was critical. 

A million things seemed to happen at once, life became a blur. The room filled with people trying to get IV's started and tests taken. My baby was screaming as multiple people poked and prodded him. My heart was breaking. The PICU doctor came and introduced herself and tried to explain what was happening. The most important thing they needed was to get a central line started on him. His white blood cell count was so high (520k -a normal number would be around 5k) that his blood was described as sludge or molasses - some of the tests they couldn't even do his blood was so thick. We were asked to step out so they could insert his central lines and try to get him stabilized. It was now 7am. We were still reeling from the news and in disbelief that this could be happening. We started calling family to tell them the bad news. And so begins our journey.....