Monday, July 11th
Carson requested a trip to Parc Omega before heading to Toronto for 3 long months of chemo and stem cell transplant, so off we went! We had a wonderful day with the whole family. Eric was glad to have his 3 boys for this trip! We were lucky to see 3 baby bears climbing up and down the trees, which was the day's highlight!
We then drove to Erica's aunt, uncle and cousin's home/cottage for a surprise visit. We had a nice pizza dinner and relaxed by the quiet lake while Carson kept looking at the bullfrogs by the side of the water.
Tuesday, July 12th
Carson's counts were all good in his final checkup at CHEO, which meant that we could now head over to Sickkids in TO to start his 4th cycle of 6. Unfortunately, while Eric was at CHEO, he received a call from the BMT (Bone Marrow Transplant) team at Sickkids explaining that since Carson recently had the surgery on July 6th, they wanted to delay the start of chemo by 4 more days to reduce the risk on infection. Since our van was already packed, we decided to head to Toronto and enjoy a few days as tourists.
Carson gets the whole living room like a king, and he also gets to take dad's spot in bed sometimes to gain as much weight as possible before being admitted. He is eating popcorn and getting his formula at the same time.
Wednesday, July 13th
Went to the giant Loblaws (old Maple Leafs Garden) to fill up our cupboards, fridge & freezer.
Thursday, July 14th
We surprised Carson with a trip to Legoland. He absolutely loved it, and he wants to go back with Gryffin one day when he's done all of his treatments.
Friday, July 15th
We headed to the hospital for blood work, a dressing change and a chat with the doctor. He again explained what to expect and what can potentially happen over the next 3 months.
Saturday, July 16th - Sunday, July 17th
We walked around the city and found a few parks.
Monday, July 18th
He had bloodwork, a covid test and vitals checked. Covid was negative, so he was now officially cleared by SickKids to start round 4. WOOHOO!
Tuesday, July 19th (Day 1)
He received 2 doses of chemo called Carboplatin and Thiotepa, which are both intense chemos. He slept most of the time with no issues at all.
Wednesday, July 20 (Day 2)
He received the same 2 chemos. For the first 3 days, we had to wear special green gloves when handling Carson. We were told that Carson's chemo would go through his pores, so we couldn't touch him or kiss him goodnight, which felt weird. He enjoyed calling himself the poisonous frog.
During the first three days, we had to wash him and change his clothes and sheets four times daily. During the following days, we had to wash him and change his sheets once, brush his teeth twice and also use a special mouthwash of sodium carbonate to help with mucositis, which we were told he will get for sure in the coming days which will include canker sores. He was surprisingly still feeling great but tired.
Thursday, July 21st (Day 3)
Rest day, no chemo, and he's still feeling good. Carson kicked me out of the room a few times because his sense of smell is still very sensitive. He says, "EEWW, what's that smell?" which means GET OUT!...or else he will most likely vomit, no joke. He also gets very irritated if people talk loud as it seems to irritate his ears, so he says, "be quiet," and sometimes falls asleep within minutes.
Gryffin stayed with both of his grandmothers in Ottawa for a week, so that we could get settled in Toronto. Our condo is only 1 block away from the hospital on Bay Street. We can see our building from Carson's hospital room. This very average 1 bedroom condo was the only one available for the dates we needed, and it cost us a whopping $6,000/mth plus taxes plus parking for a total of $21,000.
Erica's mom arrived with Gryffin. Gryffin was very excited to come to Toronto. Since Carson is in isolation, Nana and Gryffin can't go into the hospital, so they could only wave at Carson from the street corner while Carson waved from the 8th floor.
Since Carson loves frogs, Eric attempted to draw a red tree frog for him on the isolation window to boost his morale and make him happy. Since he's been treating him like a King, Eric calls him King Carson, so he wanted me to add a crown on top of it.
Friday, July 22nd (Day 4, or at Sickkids they call it Day 0 because it's the start of the stem cell transplant)
His stem cells collected in mid-June were transfused back into his body (See pic below).
He also needed a blood transfusion because his Hemoglobins were at 69. Anytime his hemoglobins are below 70, he'll keep getting blood transfusions.
Saturday, July 23rd (Day 5 aka Day 1)
He received some presents from Childlife at SickKids, and Erica's cousins Chelsea and Jordan made a care package for Carson's trip to Toronto. The toys in the room are limited because they must be washed after use. Unfortunately, he can't bring any of his stuffed animals.
He also started to do his bravery beads necklace that most cancer patients do to boost their morale. It's basically a summary of everything he's been through and going through (ex: 1 bead for his craniotomy, 1 for chemo...etc). It's going to be a long necklace!
Sunday, July 24th (Day 6 aka Day 2)
He's still in good spirits and enjoys talking about frogs with the nurses and doctors. He watched a frog video and wanted to explain how frogs lay their eggs.
Monday, July 25th (Day 7 aka Day 3)
He has to get up and move twice daily, so the physiotherapist brought him hockey sticks and a beach ball. He has to stay in his room all day because of the increased chance of infection, with his White Blood Cell count being at zero or slightly above.
Tuesday, July 26th (Day 8 aka Day 4)
Sick kids has its own TV channel to entertain the patients during the day. He participated in a cartoon bingo game, and he was very excited that he got a Bingo and his name was announced on the TV.
Wednesday, July 27th (Day 9 aka Day 5)
He's now neutropenic, which occurs when you have too few neutrophils, a type of white blood cell. While all white blood cells help your body fight infections, neutrophils are important for fighting certain infections, especially those caused by bacteria.
Friday, July 29th (Day 11 aka Day 7)
This was the worse day so far.
First of all, he needed a platelet transfusion.
Second, he tested positive for C diff. AGAIN and needs to be on antibiotics for 10 days again. He had C diff. about a month ago, but it appears that it may not have ever gone away. They gave him Flagyl the first time, which didn't work, so now they're going with the strongest antibiotic, Vancomycin.
Third, after vomiting green 4 times overnight and early morning, Eric noticed that Carson's G-Tube was way shorter than the day before. If the G-tube is pushed too far into his stomach, it can end up in the small intestines causing several issues. The tube measured 9cm from the skin going outwards the day before and was now just below 5cm. Eric immediately rang for the nurse, which led to several people getting involved. The other nurses shared their opinions which led to calling the G-Tube nurse, and then the pediatric surgeons, who then called IGT (Image Guided Therapy), requesting that we go down to see what was happening. It turns out that Eric was right, they injected dye in his G-Tube, and they could see it going directly into his small intestines, which is what Eric suspected was happening. They lubricated the area around the G-tube with a numbing agent before pulling it out about 5cm, added more dye to the tube, and saw it entering the stomach. We're not touching the G-tube for 4 days for now.
He's feeling better. Carson has been vomiting only once or twice a day since about day 3, which is amazing compared to what they expected. All the doctors and nurses are very surprised with Carson saying how great he looks this far into round 1. Usually, kids are in worse conditions, especially because he just battled meningitis about 6-7 months ago. So far, things look promising!
On a funny note, over the last 7 months of being in and out of CHEO and SickKids, at least 20+ nurses have told us how they love Carson's long eyelashes and that they have to pay to get theirs done like his and that they were jealous...lol
Sunday, July 31st (Day 13 aka Day 9)
Usually, kids start recovering around Day 10-12, and all of their levels start trending upwards, but we received good news today on Day 9 that Carson's WBC count is already going up slightly ahead of schedule, which is amazing news. The faster his WBC count goes up, the quicker his neutrophils will also climb up and help him with the mucositis in his mouth and GI tract leading to him leaving the hospital sooner rather than later. He now has 2 small canker sores caused by the mucositis, 1 on each side of his cheeks, but he's not complaining of any pain while we brush his teeth with soft bristles.
Here's a pic below of what Eric calls a Christmas Tree of meds we see daily..haha
Carson constantly has anywhere from 4-7 things going into his body. He's currently receiving a small dose of formula running 24/7, which is complimented with TPN (Total Parenteral Nutrition), so he's now getting all the daily nutrients that he needs to get healthy. Each day, they increase his formula and decrease his TPN. He can't leave the hospital until he's off the TPN and can solely depend on the formula at a minimum. He's also getting fluids 24/7 to keep him hydrated along with many other daily meds. When he's nauseous, they will usually give him Gravol. Because of the mucositis causing him some discomfort, he's also receiving a small dose of morphine 24/7.
To sum it up, since we got here on July 19th, he's received:
Carboplatin and Thiotepa (Chemos on Days 1 & 2), vancomycin, TPN, formula, morphine, lipids, Benedryl, Gravol, 1 blood transfusion and 1 platelet transfusion.
He's doing way better than everyone expected, so we're thrilled with the results despite the scary G-Tube incident. Besides the banana he ate yesterday, he hasn't eaten any food in about 4-5 days, but that's ok; he's getting everything he needs.
Thank you all for reading our blog. We do these blogs mostly to update you all on Carson's progress but also to show you firsthand what he and us parents have to go through and educate those curious about chemo treatments. We hope to God that none of you will have to go through this nightmare with any of your kids or loved ones.
Carson's birthday is on August 4th. If you would like to wish him Happy Birthday, you can post it on this website.
https://www.kudoboard.com/boards/uTLPKqeG
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