It's now Jan 3rd. We made it to Calgary! At 9am the doctors check in with us and Sebastian's white count is down to 114k already! His fluid levels are much better, he only needs half the oxygen as given in Saskatoon (was 60% now needs 30%). They would like to reduce his sedation and wake him up, and remove his breathing tube today. They send him for an MRI to check his neurological status and make sure there are no migrated or new blood clots in his brain - he gets the all clear. At 11am our oncologist takes the bone marrow and spinal fluid samples. By 4pm he is starting to wake up, he seems a lot more comfortable than he did waking up in Saskatoon, and his pain is well managed. The Respiratory Therapist comes and his breathing tube is removed. He gets so mad and we get to hear him cry for the first time in 3 days! He sounds very hoarse. He actually has a huge dent in the roof of his mouth from the tube pressing there and I worry he may have permanent damage to his palate. The PICU nurse notices his right leg gets really swollen and blue when upset due to the blood clot, so another ultrasound is scheduled. He finally calms down, seems a bit dazed, and sleeps a bit longer. Its so good to see his bright blue eyes. I finally get to hold him again, he feels so good in my arms and I never want to set him down ever again.
Day Five.
Bash is 7 months old today! At 9am we meet Sebastian and are greeted with a big smile! He has the all clear from PICU to be moved to the Oncology unit. His white blood count is down to 83k! His bone marrow biopsy came back and doctors confirmed his diagnosis of B Cell Acute Lymphoblastic Leukemia (B-Cell ALL). At 12pm we move out of the PICU and into a room on the Oncology unit. We meet the new team, get a tour of the unit, and meet some volunteers - its pizza night! At 8pm the doctor comes by to remove the two central lines in each groin. Bash gets a little upset, but is given morphine and sleeps great that night. They plan to put in a Broviac by Friday.
Day Six.
Our first day meeting with the doctors for sit down rounds - 3 oncologists, a pharmacist, hematologist, primary nurse, resident, dietician, and 2 nurses. Sebastian's levels are excellent! All teams are very pleased with his progress and the condition he's in now. The decision is made to proceed with treatments for his cancer.
We also meet with our primary oncologist and primary nurse and go over the diagnosis and treatment plan for next 5 weeks. They tell us that since this is 'infant' B-cell ALL and his type presents differently than the 'standard' he will require more aggressive treatment and he is at a higher risk for infections as an infant. They said infant ALL is curable, with a 40%-50% survival rate at 5 years post diagnosis (not 98% like we had thought), that was a tough blow. They are very positive that they can cure his cancer, as he's been doing excellent so far. After 5 weeks we want to find zero leukemia cells in his body. Depending on the results after the first five weeks of treatment we'll begin the next phase. Spinal fluid sample taken yesterday shows no leukemia cells!
We also meet with our primary oncologist and primary nurse and go over the diagnosis and treatment plan for next 5 weeks. They tell us that since this is 'infant' B-cell ALL and his type presents differently than the 'standard' he will require more aggressive treatment and he is at a higher risk for infections as an infant. They said infant ALL is curable, with a 40%-50% survival rate at 5 years post diagnosis (not 98% like we had thought), that was a tough blow. They are very positive that they can cure his cancer, as he's been doing excellent so far. After 5 weeks we want to find zero leukemia cells in his body. Depending on the results after the first five weeks of treatment we'll begin the next phase. Spinal fluid sample taken yesterday shows no leukemia cells!
Day Seven.
Nate was not feeling well this day, had a sore throat so he stays away from the unit. He misses Bash so much, but we don't want to take any chances - its hard not having him there. An ultrasound today on the blood clot shows it's still in same spot but has good circulation and should breakdown safely. In the afternoon Sebastian is taken to surgery to have his Broviac Catheter installed. This is a port that will be used for the next year to give him chemo treatments and draw blood from. He starts his Chemo Sunday.
He's been quite emotional the last two days just from discomfort, and the steroids he takes make him moody so we have happy moments and not so great ones. I'm trying so hard to stay positive and optimistic, he's done so great so far and the team is very happy with his progress. I worry about when the 'bump in the road' will hit. I have to remind myself constantly to take it one day at a time. Bash is seriously the strongest most resilient kid I know and if anyone can beat this horrible disease it's him. #teambash
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