Our sleepy baby

Seth HAD plans of trying to go to one class at school on Monday but he slept...ALL DAY! He only got up to go to the bathroom. Walking to the bathroom made him nauseas so I gave him some of his nausea medication. We did wake him up later to give him his growth factor shot. I was a little nervous to do it but we were successful. I'm also thankful because we were told just 6 mg of medication in this shot costs about $1000. Also thankful that this is covered by a program right now. He did manage to drink half the smoothie I made him that day too. 

Today he slept until about 1pm. He drank about half a smoothie again. We were told his tastes would change with chemo so to feed him whatever he'll actually eat. He was craving sidekicks pasta, so I went out and bought some, made it, and after one bite he threw up and decided he didn't want that anymore, poor guy. I thought this may happen so I also bought chicken noodle soup and crackers. He ate a whole package of crackers and almost 4 cups worth of soup, and it stayed down no problem. He didn't have energy to come upstairs so he stayed in our spare room all day again. Our bathroom downstairs is right off that bedroom so he wanted to sleep there. He did perk up this afternoon but never came upstairs at all.  

He has an appointment tomorrow for a PICC Line dressing change and bloodwork. The walk is way too long so my uncle hooked us up with a wheelchair. He has a friend who works in the medical equipment industry who said 'borrow it as long as you need.' We are very thankful for the generosity. I have asked our social worker about programs that may cover the need for this as well. ❤

They taught us how to give him this shot but also made sure we knew how to use because if we did it wrong the spring would activate and protect the needle as if it was already used.  If that happens before we administer it the medication would just be stuck inside and we'd need a new needle. Thankfully we were successful and we figured if it was that complicated they probably wouldn't get parents to do it. 😅

Happy Sunday :)

Seth's chemo round 2 went very well. He was discharged this afternoon at 4pm.

No vomiting, no nausea, no fever even! He is home and resting, chemo makes you nap like a baby again! LOTS of sleep happening. Praise God that this round went as good as can be. 

Tomorrow morning either Bryan or I will have to give Seth his growth factor shot. The nurses showed us how to do it, assuring us that it is simple and easy otherwise they wouldn't get parents to do it.😅 If Seth wanted a nurse to give it then it would've meant he'd have to stay at the hospital until tomorrow morning because it has to be given 24 hours after chemo. So he decided to give us a shot (pun intended.)😁

He is also (for now) taken off a bunch of medications for home. The only ones he still needs are sulfatrim which is only taken 3 days a week and then Vitamin D daily, which they said if you live in Alberta you should be taking that daily anyway. 

He is hoping to go to one class at school tomorrow and then rest. 

Good start!

 Yesterday Seth started Round 2 of chemo.  They gave him medication to battle the nausea and vomiting he experienced the first round.  So far it's been working well. His only side effect right now seems to be sleeping so praise God for that! Last night he was feeling good and we played games until 1 am (he had a private room). Then he slept all day.  Besides having to wake up to take medication or go to the bathroom, he was sleeping until about 3pm today.  We were just moved to another room so we have a roommate again but are thankful we had that one night in a private room to play games and not worry about being super quiet or having lights on. 

Ready for Round 2!

 Today Seth had an outpatient appointment at the hospital to check his blood counts and to change his PICC line dressing.  He did have a rash show up on his arm on Monday that was super itchy. We figured out it was from the solution they used to clean his skin around the PICC line.  We discovered this because they used it on his wrist too and those were the only 2 places that the rash show up. So they will use a different solution from now on.  I was told to give him some allergy medication and if that didn't work they would give him some cream for it.  

His blood counts were very good.  The growth factor shot they gave him sent his marrow into overdrive so his white blood count is high.  He is reacting well thankfully, and with little to no side effects.  Usually with that shot you can have sore bones, and the other medications he is on can have some side effects as well and right now all he had was this rash.  I remember asking people to pray that he had little to no side effects and God is indeed granting us what we've prayed for and we thank and praise Him for that. 

They were also ready to admit Seth today to start Round 2 of chemo.  We knew we were at the end of the Round 1 cycle but didn't know they'd be admitting him. I had made him a dentist appointment for a tooth that was bothering him and asked if we could come tomorrow afternoon as that appointment is tomorrow morning.  We were told that would be fine because they had no beds available in the oncology ward today anyway.  They had a couple people they were planning on discharging today so a couple beds would be available but waiting until tomorrow was completely fine.  So praise God for that also! His timing for things has been such a blessing.  Any prayer I've had so far for 'timing' has been granted. 💕

So, Seth's body is ready for Round 2 and that is set to begin tomorrow.  They will start off by giving him lots of fluids to help flush out the chemo. The plan is to be in the hospital about 4 days. 

Bye Bye Hair!

 Saturday Seth decided he had enough of the itchy head and despite his hair looking the same it was falling out a lot.  It was getting all over his pillow and collecting in his hoodies.  So not only was his head sore and itchy, he was itchy all over kind of like if you got a haircut and they never used a cape and never brushed the hair off of you.  

His little brother decided to do it too, and Bryan and Seth's uncle Jared shaved their beards off.  We went to a barber shop and they all did it together at the same time. 

Yesterday Seth was able to come to church in the afternoon for the first time since mid October.  We also plan to bring him to school this morning for the first time as well. He plans on doing about half a day if he can.  He feels good and has all week, he just gets tired easily.  

Seth was discharged last Monday afternoon so today is a week of being home.  Thankful he was healthy enough all week to stay home and have some normalcy again. 

Praise God ♡

The Hair

Seth is still at home! Praise God for keeping fevers away!

He is starting to lose his hair. He said his head is itchy and hurts and we noticed yesterday that he was ‘shedding’ but his hair still looks the same.

He loves his curly hair so we are leaving it up to him to choose when and how he wants to deal with it.

This is a picture I took a couple years ago of his natural curls. ❤️

First Outpatient Appointment

Seth had his first outpatient appointment today. 

He had his PICC line dressing changed and blood work done. I forgot in my updates, but this past Sunday he ended up needing a blood transfusion, so there was a possibility that he needed one again today but thankfully he didn't. 

If all goes well, Seth can be home to rest and let his body heal until his next appointment next week Wednesday, which is just for the same thing he had today. PICC line dressing change and bloodwork will be a weekly appointment. 

If Seth gets a fever we have to bring him to emergency within the hour, he has an 'Emergency Room Passport' and we have to phone the hospital ahead of time to tell them we are coming so that they can get him started on antibiotics right away.  

We have bags packed and ready to go at all times, and are very thankful that we are only 15 minutes away from the Stollery, so even if we end up staying longer and need a change of clothes or something, that's no big deal.  

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!