Sunday, June 12th (Day 18)
We arrived in Toronto. We decided to take a walk around the neighbourhood and go for dinner at Red Lobster and then headed over to our hotel for a good night's sleep.
Monday, June 13th (Day 19) - Stem Cell Harvesting Day!
It was a long 12.5-hour day at SickKids. He had a femoral line inserted, followed by a very important crucial stem cell collection. The doctors were able to collect twice as many stem cells as they were hoping for, which was great news. After being discharged, we walked around the park and found a collection of frog statues which Carson loved because he loves frogs.
Tuesday, June 14th (Day 20)
Since we were in Toronto, we decided to spoil our son and take a trip to the Ripley's Aquarium. Carson loved it! Afterwards, we headed back home to Ottawa.
Friday, June 17th (Day 2)
He didn't enjoy the feeding tube at all, and he didn't want to eat or drink anything while it was in his nose. Unfortunately, Carson was nauseous from the chemo, and the feeding tube came out. Over the first 4 days of having the feeding tube, he puked it out 3 times, and they had to put it back in.
Saturday, June 18th (Day 3)
A stool sample determined that Carson had C-difficile which is a germ (bacterium) that causes severe diarrhea and colitis (an inflammation of the colon). He was given an antibiotic to take four times a day for 10 days. Poor kid can't catch a break.
Heading home. We celebrated Father's day with the Beaulne family.
Monday, June 20th (Day 5)
His feeding tube came out a third time, and since we were at home, we decided to leave it out. Carson hadn't been eating due to the discomfort of the tube in his nose and throat. He was very happy to watch hockey and eat lime tostitos. Go Avs Go!
Tuesday, June 21st (Day 6)
Carson was required to go see the CHEO dentist to ensure he didn't have any infections with his teeth. The dentist said that Carson's frequent vomiting over the past weeks has eroded some of the tooth enamel of many of his molars, but the good news is that he doesn't have any infections. After taking x-rays, the dentist gave us more bad news. She said that Carson had too many teeth and had a condition called mesiodens. I thought she was joking, but she wasn't. The dentist believes that he has 2 extra teeth in his gumline that will need to be surgically removed sooner rather than later, but we have no time to deal with that for at least the next 3 months or so. Apparently, only 3% of people get mesiodens.
The doctor decided to leave the tube out since he was eating well, and the tube was uncomfortable. 
Thursday, June 23rd (Day 8)
Although he hadn't been to school since March, we decided to join his class at the park on the last day of school for a surprise visit. His friends and teachers were so happy to see him since he hadn't been at school since before Christmas, so 6 months later. We are so happy that Carson will have the same teachers next year.
Friday, June 24th (Day 9)
He had a short visit today because he didn't need any transfusions.
Saturday, June 25h (Day 10)
We headed to the cottage for two weeks. My family rented a cottage near Sharbot lake. The boys enjoyed playing with their new Ghostbusters playmobiles (we have the best neighbours!), fishing, looking for frogs and much more. Carson can't swim because of his Broviac, but he did some fishing and went on the canoe once.
Monday, June 27th (Day 12)
He had blood work, and he needed platelet and blood transfusions.
He had an EEG and ECG. All the tests that need to be done before our trip to Toronto. Eric's cousin Annie works in the unit, and she surprised Carson with a new Lego.
Wednesday, June 29th (Day 14)
We had a zoom call with the doctor at SickKids. They explained the treatment plan and went over the potential risks of infection during the three-month treatment. Scary stuff! They said that some of the chemo that he will be receiving can potentially continue to diminish his hearing. The scariest part is that they told us that there's a 5-10% chance that some of this stronger chemo that he will start to receive in the last 3 months can potentially damage the small blood vessels that go to the lungs. If those vessels get damaged, they would have to stop chemo treatments which would be devastating.
He had blood work, a dressing change and chemo.
He had an MRI. Great news, there is currently no sign of cancer cells in his brain that the MRI can detect, but there might still be some microscopic cells left which is why Carson needs to do chemo for 3 more months to make sure it kills all those cancer cells .
Monday, July 4th (Day 19)
He had bloodwork, and all his levels are high enough for his G Tube surgery on Wednesday.
Wednesday, July 6th (Day 21)
He had his G tube surgery this morning. He has been eating really well, but he can't recover the weight he lost during chemo treatments.
Thursday, July 7th
He had a visit with the audiologist. Unfortunately, his hearing has diminished. The audiologist explained that it will be difficult for him to understand voices in a loud or crowded setting. The chemo called Vincristine that he's had for the 3 rounds has caused irreversible, permanent hearing loss, and he will need a hearing aid in the future. The intense chemo that Carson will undergo in TO in the next 3 months can also potentially cause even more hearing loss.
Friday, July 8th
We are heading home. He's still in a lot of pain but recovering well. The dietician's plan is to have him eat normally during the day and give him formula in the evening.
Upcoming events...
We are heading to Toronto on July 12th for the 2nd half of this nightmare. He has an initial assessment on July 13th followed by chemo starting on July 15th (round 4). He will receive 2 days of chemo, 1 rest day, and then his 1st stem cell transplant on day 4. The last 3 cycles are now 28 days long instead of 21, and he will recover in the hospital for 3 weeks and hopefully stay in our rental condo for the last week of each cycle. After many phone calls, we were finally able to apparently get the last remaining 1 bedroom condo in all of downtown Toronto for a low price of $6,000/month. Thanks to all of you who donated because your donations are helping us tremendously.
Comments
Post a Comment