From the beginning...

Wednesday October 15th 

I took Seth to a walk in clinic after he didn't sleep all night due to pain in his chest and back. The doctor sent us for blood work and an X-ray. After the X-ray the clinic phoned us and told us to go straight to emergency. We were taken in almost immediately when we arrived at the Stollery Children's Hospital. Seth was in a lot of pain and thankful to be on a bed so he could lay flat, the only position that he was comfortable. They told us that Seth had a mass in his chest. After some waiting and the doctor took us into another room and told us that they though Seth may have cancer. 

Thursday October 16th

Seth had ultrasounds of the mass and then his heart (to make sure it was strong enough to do a biopsy) and then a biopsy. He was put on oxygen and told to lay at a 30 degree angle, no more laying flat as it was squishing his organs including his trachea which was making his breathing worse. 

Friday October 17th

More tests. They took samples of his bone marrow and spinal fluid to make sure nothing spread to his bones or brain. No cancer cells were found. Praise God! 

Saturday October 18th

Biopsy samples they took couldn't be used, so Seth had to go for another more invasive biopsy. After that biopsy Dr. Dicken came out and told us that when he went in he found that Seth's left lung had a lot of necrosis. Seth basically had 3/4 of his lung that was just dead tissue which was why the previous biopsy samples were no good. So he took as small of a sample as he possibly could. The biopsy itself went well and Seth was given a chest tube so his chest could drain off fluid inside. They started him on steroids. 

In case anyone else was wondering like I did, you can live with one lung. Thankfully we don't have to go down a road of a lung transplant. Doctor still wasn't sure what we were looking at. Could be cancer or some weird infection, it all seemed not typical of what they see. 

Monday October 20th

Seth went in for CT scan and a PET scan. While we were waiting for biopsy results they wanted to get all the scans done so once they had results they could have all the scan and look at the whole picture of what was going on. 

We were supposed to get results today of the biopsy but the oncologist said that the results are too broad and they will have a better idea tomorrow. He didn't want to scare us with a bunch of hypotheticals. 

Seth also gained 20 pounds of fluid from IV and surgery. I didn't even know that was possible. We were assured that it's pretty normal.

Tuesday October 21st

Seth got his chest tube flushed. They do this so that his blood doesn't clot and try to heal the opening. They want the fluid to drain from his chest. 

Results of the PET scan showed some activity in the lung area. We had to wait for pathology results to get the whole picture. They were hoping that whatever this is they can treat and avoid another surgery on his lung. His lung is quite squished from the mass. 

Tuesday evening we got the confirmation that Seth does have cancer. He has a sarcoma but they were not sure yet on which type of sarcoma. We were told sarcomas are not as common and his case is a little complicated. 

Plan is to start chemo tomorrow for sarcoma and once they figure out which type it is they will change the plan accordingly. But they don't want to wait any longer and want to get started on treating it. So for now the plan is 10 rounds of chemo (21 day cycle) 3 days of chemo, 1 day of a growth factor shot and then the remainder of the cycle healing so he's well enough for round 2. 

Wednesday October 22nd

Seth had a PICC line put in.

This is what Seth's looks like. 

So he will have the 2 IV's that hang out of his arm.

Thursday October 23rd

First day of Chemo. 

He had his other IV's removed so he just has the PICC line now. Oxygen levels are good again so he was taken off oxygen. 

Friday October 24th

Second day of chemo.

Seth was very swollen this morning. His jawline completely vanished, he looked like when he was a toddler.

Saturday October 25th

Third day of Chemo.

Seth had some nausea and threw up a few times. They gave him medication to help with that. He know has to wear compression socks to help with the swelling from all the fluids. He gained 60 pounds at one point, and at time of writing this (Nov. 5) he is back to his normal weight.

Monday October 27th

Seth was given a growth factor to help heal his body until the next round of chemo. The only thing keeping us in the hospital is his chest tube. He cannot go home until that's out and healed enough.

Tuesday October 28th

Chest tube came out this morning! Needs to heal a bit and Seth needs to drink about 3 L a day in order keep him off IV. They want to make sure the chemo is being flushed out of his system. 

Seth went for some physio today. He had to go up and down a few stairs just to see how out of breath that made him. He did well. 

Wednesday October 29th

Seth went for a walk with a walker. They wanted him to take one in case he felt weak or tired. He basically carried it because he said it was annoying how it scraped the floor. So needless to say he did well with walking today. His swelling went down as well so he fit in his own shoes. He was wearing Bryan's crocs for a couple days when needed. Also his jawline came back, lots of the swelling went down. 

Thursday October 30th

Seth was given a pass to sleep at home tonight. He has to come back in the morning to go over some stuff and then discharged for the weekend. 

Friday October 31st

Back at the hospital as planned to get blood work done. We have to go get a wedge for his own bed, still not allowed to sleep flat. We got discharged in the afternoon and looked forward to a weekend at home. 

But it was not to be. Friday evening Seth got a fever so back to the emergency room we went. His body is at war within itself and they told us fevers would happen. Got admitted back into the oncology ward. 

We will stay here abut 48 hours they said until his bloodwork comes back and his fever is gone. 

Monday November 3rd

We got confirmation that Seth has Synovial Sarcoma. It is in his connective tissue. Synovial Sarcoma is rare, in adults it's about 1 in 800,000 people but in children it's even more rare, his oncologist said it about 1 in a million. He also said rare doesn't mean fatal it just means it's not as common and doesn't have the same straight forward treatments as common cancers. Seth is a unique case and his oncologist also said this means he will be getting lots of attention because of it, which is a good thing when you are receiving care. 

He did have other spots show up in his previous PET scan but his oncologist thinks that could just be inflammation from his biopsy surgery. They will keep an eye on that and will do another PET scan after round 2 of chemo and see if that changes. Dr. Eid (his primary oncologist) said that sarcoma doesn't typically spread to lymph nodes, but then also added that unless the mass is covering up some other spots they can't see yet. They are still trying to figure out where the cancer originated from, if it's the mass or the lung. 

Seth got discharged this afternoon! 

Tuesday November 4th

Seth felt good all day, didn't even have a nap, and even went to catechism class! We went with him and stayed at the church in case he got tired and needed to go home. He made it through the whole class but was ready to go home after and relax. This was his first 'normal' thing since October 15th. Praise God!