A Hard Week and Hanging onto Hope

It's been a tough week. Too tough to worry about a blog post. So here goes I'll update as well as I can remember. 

Sunday Feb 1

Seth's back was still bugging him and he tried to sit through the afternoon church service but didn't last long. I sat in the foyer with him and massaged that knot in his back for the duration of the service.  I was willing to take him home but he wanted to be there.  Thankfully, a friend was also in the back and gave me a sample of LactiGo which she said will just help on a cellular level instead of a surface level.  It did wonders for Seth! His back was still a bit sore but he managed to sleep through the night and didn't need me to massage his back every 2 minutes during the day like before.  (If you need some of this for your own ailments look up _inspiringlifechanges on Instagram and Janeanne can help you with that like she helped me. 👏)

Monday Feb 2

Seth ended up getting a fever.  His temperature was up and down all day and then it finally stayed up long enough that it meant a trip to the emergency room.  It was very busy and I was very thankful that Seth has an Emergency Room Passport so he gets bumped up and we were in the waiting room less than 10 minutes.  They seemed very unconcerned (maybe because he was at the end of a chemo round?) but still did some bloodwork and sent him for an X-Ray just because we told them about his back pain. They just wanted to make sure nothing concerning was happening. So we had to wait on all that but Praise God it was nothing to be worried about and they sent us home.  We got home again by 2 am.  So, we started off the week tired.🥱

Seth in emergency until 2 am. He got as much sleep as he could.

Tuesday Feb.3

Seth had an appointment to prep him for radiation.  He was too young for tattoo markers, so he has stickers on his chest where they'll line him up with the laser beams on the Radiation Therapy machine.

His appointment to get him ready for radiation. He came out smiling and we also giggled when he sat down and were like, 'Wow a vision of beauty!' as we all chuckled and wondered who picks the pattern for these gowns?? 😂

Wednesday Feb 4

Seth had a PICC line dressing change and bloodwork like always.

He happened to wear shark socks the same day as most nurses were wearing shark shirts that said 'take a big bite out of cancer.'  🦈

  At his follow up the oncologist met with just me and said that Seth's tumor is still the same.  Not growing thankfully, but also not shrinking.  He expressed that he was disappointed in this result. There is no cure for his cancer and the only way to get rid of it is surgery. With the size his tumor is, surgery cannot happen for a few reasons.  He explained it to me like this: When you have a cancerous mole removed, we take the mole and some skin around it to make sure we get all the cancer cells.  With Seth they cannot get that bit of extra around it because the cancer has it's greedy little fingers around lymph nodes right by his heart.  There is just no wiggle room for taking any extra tissue.  This poses 2 threatening things, the first being that the morbidity rate of doing a big surgery so close to his heart is very high, and second, if they can't take that extra tissue around the cancer the chances of the cancer coming back is also very high.

This is where he told me if it doesn't shrink he is confident we can keep the cancer at bay like the chemo has been doing. Surgery is the only way to get rid of it as there is no cure for Synovial Sarcoma. He had no idea of timeline or anything, but simply said his sarcoma is a slow growing one, and  he'd rather have Seth feeling good and live a good rest of his life than risk him dying during surgery just to have the cancer probably grow back anyway.  This was so hard to hear, and even worse when he mentioned that he'd like Bryan and I to meet with palliative care just so if (yes he said IF and not WHEN) we need it, it's not all unfamiliar.  Also he said if we meet the care team we can make sure we are happy with them. He added that the team is amazing but just in case there is someone you really don't like they can make sure that person is not part of Seth's palliative team. 

He then told me he is NOT giving up hope and we haven't tried radiation yet and still have other options to try.  He just wanted to be transparent that it's being stubborn and he didn't want to pretend that everything is fine and then one day just tell us he's got nothing else he can do and it's a shock.  This is shock enough but with hope hanging on still. 

I was alone to take this news and his oncologist asked if he could give me a hug, which of course I said yes, I needed one, and maybe he did too. It has to be SO tough to deliver bad news as a pediatric oncologist. He was so sorry he had to tell me this and then complimented me saying he was impressed in how Bryan and I are handling this whole journey.  I shared that we believed in God and have faith, to which he said, 'Me too,' and I said, 'without that we would would probably be VERY different.'  That was kind of nice to hear he also believes. I told him we pray for him and the whole medical team often, and he seemed kind of surprised that we would even think to pray for him.  I shared that God can do miracles but he can also use people to do it. It was a good moment in this heartbreaking meeting. 

SO...all that being said, the plan is still moving forward as was the plan before.  Nothing really changed at all in that regard. We are still trying to shrink this thing to a size where it can be removed.  So there is still hope and we aren't giving up on that even if the light of it looks a little dimmer. 

I decided I didn't wanting Dr. Eid telling Seth yet.  I wanted to tell Bryan first, so I was given a few minutes before Seth came back into the room so I could put on a brave face.  Seth was ready to be admitted as well, we were just waiting for a room to get cleaned.  We were told to go for lunch or whatever and wait for the phone call to come in.  We went for lunch and realized we forgot a couple things at home so we just went home, we live only about 15 minutes from the Stollery and I figured we probably had time.  At home I couldn't keep it together and I needed to phone Bryan and share the weight of this news.  He made his way home and we spent time together as we waited for a phone call to come to the hospital for admission.  I was thankful we decided to wait at home for that call and not go back right away because it was 4 hours later that they were ready.  Good note for next time to just go home and wait for the call. I'm thankful God gave us those 4 hours as well so Bryan had that time to come home, we could chat privately and then spend some time at home with Seth. 

Seth was admitted and started on fluids. He wasn't hydrated as quick as previously so instead of getting chemo at 1 am, it took until 8 am before his body was ready to start Round 6 of chemo. 

Thursday Feb 5

Seth typically is feeling good the first couple days of chemo and this was no different.  It was also the day we had Dr. Eid tell him what was going on. He wanted to tell him alone and at first I thought of how I felt getting that news alone and didn't want Seth to experience that, but he explained that often teenagers won't talk or ask any questions, they just look at their parents.  So we agreed and Dr. Eid chatted with us first and told us what he was going to say to Seth.  We waited and came back in the room as soon as they were done talking and by that time our minister, Rev. VanSpronsen was already on his way, which was God's perfect timing again.  Bryan had asked him to come, but our doctor meeting ran later than we thought, so he ended up coming right after Dr. Eid was done talking with us all. I think we all needed to meet with him and to have that meeting right after was actually really nice even though it was very difficult for all of us, him included. 

Friday Feb 6

Friday we told the rest of his siblings, please pray for them as much as you pray for Seth. 💔💔💔

Hailey, Drew, Seth, Mya

Saturday Feb 7

Some of Seth's friends came to visit. It was almost harder telling them than our own kids because we can't comfort them the same.  Please pray for Seth's girlfriend, friends and school/church community.  It's so hard for all these kids, and for their parents to have to navigate their emotions along with their own. 

Sunday Feb 8

Seth was still in the hospital on Sunday and I hadn't really been home to spend time with my other kids after learning the disappointing news of no change.  I decided to live stream with them so we could just be together, as we were all emotionally exhausted. With so much visiting and hard phone calls the last couple days I just wasn't up for talking at church and possibly missing the fact that my kids were all emotional and escaping to the van alone. I just needed that time to be available for them that morning. Also, I got the news alone and just didn't want to sit in church after this week without Bryan beside me.  And what a sermon it was that morning! That could not have been easy to deliver after our meeting with him this week. If you are struggling with the 'WHY?' of this journey please go listen to it, it was so good to hear. 

Rev. J VanSpronsen -Sermon from Feb 8 2026

Seth was supposed to be discharged Sunday morning, but they wanted to give him a blood transfusion because he was starting radiation the next day. He's usually tired and nauseous the day after he's home so they wanted to make sure his numbers were up and in good range. He was discharged Sunday evening. 

Monday Feb 9

Yesterday morning was his first Radiation Therapy Treatment.  All went well. It was hard to leave that room knowing those big heavy doors protect us all outside the room and you just think of the fact that you left your child in there on purpose.  I told this to a friend and she said, 'God was in there with him.'  Which was such a comfort because it felt so awful to walk away and know he was the only person in there with only a microphone and a camera to communicate with staff if needed. 😓

You can see the little X sticker on his side, they are lining him up with the laser beams to make sure he's in the right spot. 

His appointments are very quick and when we got home he went straight back to bed and slept half the day away.  When he got up he looked so much better than he usually does when he's done chemo, so that blood transfusion helps.  He had no nausea today or anything. I know it's only the first of 12 treatments but I was happy it didn't start with awful side effects. Praise God!

God has definitely been keeping side effects away! This journey is hard for Seth, but there are SO many ways that God has made it easier on us all.  We are so thankful to Him for that!

That brings us to today!

This morning Seth had his second treatment, we figured out the parkade and where we are going once we park. So a quick in and out, no nausea or anything again.  We are trying to get Seth to do some school work when he is home and he feels very unmotivated so please pray for this too.  It's hard to go from an active kid to one who has no energy.  This week is Heart Week at school and also a short week so he wanted to just stay home.  School will be very busy with fun stuff and he wasn't up for it. We will pop in tomorrow to grab some school work though.

Well that has been the week for us! Go give that sermon a listen! We know God can give us a miracle. Seth could wake up with a brand new lung if God wanted him to.  Is He willing? Do we only praise God based on what He does for us? 

We have our hope knowing what God can do but we also have to trust that He knows the best plan.  We see a couple puzzle pieces and He sees the whole finished picture. One day I hope to see that same picture and say,' Oh I understand what you were doing with this.' 💖

Chatting with a few people lately and talking about different Bible stories like Shadrach, Meshach and Abednego and how God didn't save them from the fiery furnace, they still went in (and willingly) but God sent his angel to be with them. King Nebuchadnezzar was astonished when he saw 4 men in the furnace and not just the 3 he sent in there. He saw that they were not burned up and called them out and worshipped God saying, 'there is no other god who is able to rescue in this way.' (Daniel 3)

So as we send Seth into a room with Radiation so harmful that the big metal doors are 2 feet thick to protect the rest of us, we know God can make him come out without any harm to anything but the cancer. Also I'm going to feel differently when he comes out of that 'fiery furnace' where he could literally have burns on his skin as a side effect and the first thing he's done both times is put his sweater back on. 😎

This week has been tough but God is good all the time and He's been good to us.