Carson's birthday, end of cycle 4 and cycle 5

Thursday, August 4th (cycle 4 continued from previous post)

He had a great 5th birthday despite the fact he was stuck in isolation! The nurses made him a giant birthday card, and he got to throw shaving cream in a nurse's face that happened to be her birthday as well! Gryffin and Nana were given permission to visit.

He loved seeing all the messages on his Kuddoboard. Thank you all so much for taking the time to wish Carson a Happy Birthday!

Monday, August 8th

He was discharged from the hospital, completing cycle 4 like a champ! His little brother couldn't wait to give him a hug!

We had another birthday celebration at home.

August 9-19 (outpatient)

He slept at the condo, but he still had blood work and a variety of tests every couple of days.

We received the shocking news that Carson had lost 50% of his hearing in his right ear and 75% in his left. We knew that he would lose some hearing over the last 3 cycles of high-dose chemo but not that much in 1 single cycle. This goes to show you how strong this chemo called carboplatin is. Since he lost almost half of his hearing, they decided to lower the carboplatin dose to 50% for cycles 5 & 6 so that he wouldn't lose anymore. He will unfortunately need hearing aids in the future.

Friday, August 20th - today, September 24 (Cycle 5)

His 5th cycle didn't go as planned. It's been a complete DISASTER! Carson suffered a very rare and severe complication called Thrombotic Microangiopathies (TMA) after receiving his second High Dose Chemotherapy. As such, he will not be able to complete his final 6th cycle of HDC here at SickKids in Toronto. This news has been devastating for our family, but we are hopeful that the 5 cycles of chemo he received were enough to destroy all of the remaining microscopic cancer cells. We can only pray that he doesn't have a reoccurrence in the future.

Thrombotic Microangiopathies TMA is a rare but serious medical disease that causes organ damage due to the formation of microscopic blood clots in capillaries and small arteries.

Unfortunately, Carson suffered significant damage due to TMA. The 2 biggest issues that TMA has caused Carson over the past 3-4 weeks are high blood pressure and kidney damage that will hopefully be cured over the next months with medication. He currently has what they call acute kidney injury (AKI), which could potentially turn into chronic kidney disease (CKD) in the coming months. AKI can be reversed if treated early which it was, so we're hopeful that he'll make a complete recovery. They believe that he currently has stage 3 (moderate) kidney damage out of 5 stages. He has kidney leakage, which means that he has small holes in his kidneys. This is problematic for his upcoming MRI with contrast scheduled on Tuesday, Sept. 27th. The contrast can leak through his kidneys and into his body which can cause another major complication called Nephrogenic systemic fibrosis (NSF). They cancelled his contrast MRI earlier this week for that specific reason because of the dangers, and they decided to delay it 6 days to give the kidneys more time to heal and increase his odds a bit. The good news is that the odds of getting NSF is below 4% if you have stage 4 or lower. We have no choice but to proceed because we have to see if the tumour is gone or not.

Carson's BP and kidneys are both slowly getting better, and he may get discharged before October 1st.