Praise God for a week of no updates...and some more Oilers tickets 😉

 For starters, PRAISE GOD yet again for granting my personal prayer of not having anything to update you on for a week.  A friend commented on my facebook sharing my blog update from last week and said, 'Well I hope I don't hear from you for a week.' GRANTED 💝 It's such a gift, a blessing, an answered prayer, take your pick of what you want to call it. 

Seth DID have a cold this week (worse than the minor one he had before) that he was fighting, and here's something you never thought of I'm sure, but when Seth's hair fell out, he also lost his nose hairs. Your nose hairs have more function than you realize so thank God tonight in your prayers for your nose hairs! (I can already hear all your little kids laughing during prayer and I love that joyful sound!😂) Seth doesn't have those wonderful nose hair filters so it makes it easy for pollutants and colds and other bugs to make their way into his system. Again, this is also why it's so amazing that all he's had is a cold so far. Praise God for protecting him from all the sickness that have been going around when his body is incapable.  Like I said in my last post, his sisters were sick and had to stay home from work and school and Seth??? Didn't catch it. The word MIRACLE comes to mind.  And while I thought maybe his medication that prevents him from getting pneumonia might be the reason, I looked it up and it clearly says this medication does NOT prevent colds, flu, or other virus infections. 

Miracle it is. Medications can do amazing things but there's no limit on miracles. 🙌 Seth could literally grow back a whole new lung and I wouldn't be shocked (ok maybe a little😉).  I know what God is capable of and our family is grateful for any miracle He chooses to send our way. 

Seth had a bit of back pain last week, which I assumed was just from playing a little basketball, but being that it was on the same side as his cancer and knowing the doctors wanted us to tell them of any pain I had a bit of concern. I was putting a muscle cream on his back and massaging his back in one spot on Wednesday because he was so sore. He had a hospital appointment on Thursday so I figured we could wait until then to see what was going on.  While he got his PICC line dressing change they sent for a physio therapist to check on him.  Less than 20 seconds and she said, 'Oh ya you have a big knot in your back on this side.'  I'm pretty sure Seth was a little worried that morning too because he seemed quiet and tired, but once she said that he perked up and seemed himself again. To be fair, we did think his cancer was growing pains remember? So that worry is 100% valid. 

We were told to do a hot compress and continue with topical muscle cream.  He's still sore but hopefully he feels some relief.   

At his appointment they were prepared to give him a possible blood transfusion as well.  Last week his numbers were low but not quite enough for a transfusion.  He was more tired in the past week, but I figured it was because he wasn't sleeping well because of his back.  Turns out that's exactly what it was because his levels were up from last week, his nurse called and told me, 'His levels are lovely, so he can take that extra wristband off.'  Seth's favourite thing!  He hates wearing hospital wrist bands.  When he goes in for Chemo treatments they just stick it to his IV pole, as per his request to not wear it. 👍

After his appointment for his PICC line dressing change and bloodwork, he went for another PET scan.  I can see on my app that the results are in but as I've said before I tried to read it once previously and I don't understand it, so everything sounds terrible! I just see that the results are in and we wait for the doctor to tell us in plain English what's going on.  So we are waiting for that doctor meeting now. 

During Seth's PET scan I received a call from the KWCS (Kids With Cancer Society) that they had 4 tickets for the Oiler game that night if we wanted them! So that was a nice surprise for Seth coming out of his scan. 🤩

Looking ahead, we wait on PET scan results to be explained to us, and this coming week Seth is due to go back for Round 6 of Chemo.  His oncologist said previously that Round 6 they'd probably do radiation as well, but we'll hear if that's still the plan at the same time as we hear the results of the PET scan.  He has a scheduled appointment on Wednesday. 

The Stollery Radiothon was going on while we were at the Stollery.  Seth was encouraged to write a little piece of his story on a rocket ship and put it on this board. 

1 in a million kids who get diagnosed with cancer have Synovial Sarcoma. That statistic still baffles me. If God's writing a miracle story right now though, why would he pick any other cancer right? He's just making sure this story doesn't go unnoticed and many will praise Him through it!💖

Morning of a PET scan Seth isn't allowed to eat so by 3pm he was starving. Took him out for some Jambalaya after!

Seth with Jaren and Jaxon at the Oiler game!  (and Bryan, taking this photo).

More to be thankful for

 Today Seth had his PICC line dressing change and bloodwork. They did give him a hospital bracelet for a possible blood transfusion tomorrow, but then called me and said his numbers are still good.  The magic number for needing a blood transfusion is 70.  So far he only needed one, and that was a while ago.  His levels were at 90 and when they called me it was at 86, which is low but not low enough to require a transfusion. I was told to bring him in for bloodwork to test his hemoglobin level again if he seems extra tired or dizzy when he's standing up, otherwise they'll see him next week!  According to the chart a normal hemoglobin level is 125-170.  

This also explains why on Tuesday he got through half his English exam before he needed to stop because he was just too tired.  He finished the rest of it today. We are very thankful for the accommodations the school is allowing for him when he needs it.  We are also trying to decipher what's a need and what is him just not wanting to do any school work. 😉 He likes to joke with teachers and sarcastically say, 'I have cancer,' when he wants to get out of things😆😇.  He told us he has a teacher that puts a limit on it now and says, 'Seth you've used that 5 times, you can't use it anymore.' 😂  I'm happy he's joking around and teachers are joking back and making light of his difficult lot in life. So grateful for our community, I will never be able to say that enough. 💖

We are also thankful that other than a minor cold Seth has not gotten sick.  Both our daughters were sick this week and had to stay home from school and work. I did think I should clean all our doorknobs trying to prevent it, and then forget to actually do it.😥  It's almost like God is saying, 'You have enough to worry about, I got this for you.' His first week home we are always waiting a bit before putting our hospital bags away JUST in case. Besides the very first round of chemo, we still have not had an emergency visit.  Praise God!

He has his regular PICC dressing change next week Thursday with a doctor follow up and a PET scan again. Pray I don't have to update you on anything until then and that Seth will continue to recover from this last round! 

Home Again!

 My predictions were correct and Seth came home Sunday around noon.  The pharmacy was closed on Sunday so I had to go this morning to pick up his Lapelga (growth factor) shot and I will have to administer it this time. I'm glad I had it written in my 'notes' on my phone from last time of every exact step to do it correctly.  It's not complicated but I'm scared of doing it wrong and hurting Seth and/or wasting a shot that costs $1000😟(Thankfully it's fully covered for now). Even as I look at the steps I'm thinking 'that's easy' and also, if it was hard, I'm 100% sure they would not be allowing parents to give it. 😅

Seth was feeling pretty good yesterday, I expected him to go straight to bed when he got home but he stayed up and finally had enough around dinner time. We got him to at least eat some soup and then go to bed. He is still in bed currently, he'll probably be there most of today, and will probably start to perk up again tomorrow. 

So just routine stuff this round. Nothing out of the ordinary from what we expected.  He has a PET scan coming up and just regular dressing change appointments.  Once his medical team is all 100% on the same page, and have had a chance to confirm that in a meeting, then we will hear about the probability of adding radiation in Round 6.  As we've seen before though,  plans can change depending on scans and other factors, so we'll have to wait and see. 

While Seth was in the hospital he was feeling well and didn't really sleep a lot until the 3rd day, so on Friday he was working on his Lego a good chunk of the day, and we went to the Teen Room to paint rocks for the new Atrium. We wanted to be the first ones to put rocks in it and we were! That's a fun memory to have ❤ 

His Lego Lamborghini. They keep this at the hospital so he has something to look forward too when he has to come in. 

My crab. I wrote 'The Steroid Crab - Laura + Seth 2026' on the back. His bead journey uses a crab bead for steroids as well. They make you irritable and grumpy. (Maybe I shouldn't have made this crab look so happy)

Seth's crocodile and the little rock with the face he always draws everywhere. 😂

It'll be a hard one to find! That just makes it more fun to search for. 😋

This mornings Bible reading I highlighted a portion of Matthew 21 where Jesus says if you have faith and do not doubt you will be able to move mountains. vs 22 'And whatever you ask in prayer, you will receive, if you have faith.' 

Let's not forget that we have an Almighty God who is capable of the unimaginable! He has already granted so many of our prayers and then some.  We thank you for praying for our family and we want to remind you that whatever your struggles are right now, God is waiting for you to come to Him.  So pray. Don't underestimate the power of talking to the Almighty God, He sent His Son to die for us so that we may have that access to Him...so use it. ♡

Round 5!

 On Wednesday morning Seth had his regular outpatient appointment with possible admission that day. We just had to wait for a bed to be available. Again timing was amazing, praise God! He had his doctor check-up and PICC line dressing change and then I dropped him off at school with 20 minutes to spare before he was off to a field trip at Galaxy Land for Physics. I received a phone call from the hospital saying they'd have a bed ready around 8pm.  Perfect! His sister wanted to take him out for dinner, and those plans they'd previously made could still happen. 

We arrived at the hospital Wednesday night, they put him on IV fluids to prep for chemo, which they started at 3am.  They are just doing the one chemo this time so I'm curious if he'll feel better and less exhausted after this round. We are typically here for 4 days so I'm guessing we'll be coming home Sunday. 

In the Family Room he asked if he could draw on the board and they said, 'If you're big enough to reach the markers, you're allowed.' 😁 (The marker holder is just under the 'S')

He's doing well, no harsh symptoms. His most annoying symptom right now is having to get up to pee in the middle of the night, which we have in common now. 😂

We went and visited the new Atrium area at the hospital which is really nice, and as people go there it also frees up some space in the Healing Garden area as well! Now we have lots of nice space to go sit and read or play a game or just walk to when we want to get out of this room. 

Sitting in the brand new Atrium area ♡

Praise God for his ongoing care in keeping symptoms away and providing so much 'perfect timing' moments.  We praise Him for all of you reading this and the care and love that our community is surrounding us in. We are starting to settle into this new routine.  We know God has a plan with Seth's story even though we don't understand it. No matter if we have a good or bad day, God is good all the time. May His name be glorified, and may He use our family and Seth's journey to fulfill whatever plan He has in store for Seth, for us and maybe even for you. We just trust that a masterpiece is in the works, and some days trust is all we have because we have no understanding of why.

Praise Him always ❤

Last appointment update.

 Yesterday Seth had his regular Wednesday appointment.  Bloodwork and PICC line dressing changed and met with his oncologist, Dr. Eid.  I thought maybe he'd be sending Seth for another PET scan next week but he said he has to meet with the team, including the radiologist and by the time they all make sure they are on the same page he said we'll be looking at around Round 6 of Chemo.  Seth is in his recovery time of Round 4 for another week and a half yet.  So Dr. Eid didn't want to send him for an unnecessary scan as all these scans are also forms of radiation and are not healthy to do unless actually needed. 

Dr. Eid also said that on top of meeting with the Oncology Board, he will also be presenting Seth's case to the Canadian Cancer Tumor board (or something like that).  Basically he want to present it and see if there is any new treatments or anything.  He said he likes to just have a Plan C,D, E etc.  He didn't say this in an alarming way but just that he wants to make sure he knows of anything out there that could be helpful for Seth. 

So looks like coming up we have another Round of Chemo.  He WILL be only getting one type of chemo for the next couple rounds because they don't want any added risk to his heart.  Seth gets medication during chemo to protect his other organs from the Doxorubicin chemotherapy, and this is the one they won't be doing for the next couple rounds to make sure his treatments are being done effectively but also as safe as possible. 

God is good, always. Seth had a great choice of shirt for his appointment.  Spreading a little light everywhere we go, you never know who it reaches. 💡

Thankful Seth has youth on his side to fight this. Also, thankful he's youthful enough to be at the Stollery Children's Hospital for this too.  God is good to us and goes before us in this battle. ♡

Nothing New (under the Sun)

☀ Had to add the 'under the sun' part on the heading. There is no new update and adding the 'under the sun' is a nice reminder that there is nothing new that we go through on this earth that surprises God. He knows all things, even before they come to be, and this is all part of a plan of a bigger picture unseen to us. We are only seeing a tiny piece of the puzzle and we can trust that God is working through Seth's story. 

There is not really anything new since Tuesday but I know sometimes people wonder if maybe we are just busy and not updating.  He had his PICC line dressing done already before we came home so we went in for an appointment today just to do some bloodwork. His whole visit was less than 5 minutes.  We stopped in the Family Room to get some beads for his Bead Journey and then to Tim Hortons for 15 more packs of hockey cards. 😁

Every appointment, bloodwork, chemo treatment, etc has it's own bead so you can have a visual of your cancer journey. Next Christmas it'll be so long we can probably decorate the Christmas tree with it, which I think would be neat, instead of just keeping it in this bag all the time. 

Also today we braved these ridiculous winter roads to go to the Registry Office to finally get the Handicap Placards.  We were able to buy 2, which will be nice so we don't have to remember to bring it along with us every time and can just leave them in our vehicles.

Temporary for 12 months. So we are good until the end of 2026. Praying we won't need them that long. 😉

Seth's next appointment is just for a regular PICC line dressing change, bloodwork and a follow up with the doctor. That's next week Wednesday, so there shouldn't be anything new until then.

Also side note that Rev. J. Vanspronsen's sermon for our new years service was SUCH a great one! I highly suggest you go take a listen. It has us in tears and then singing the song about 'without God's will not a hair can fall from your head' was unsingable for Bryan and I. But it was so so good.  If you need any encouragement for the upcoming year, go take a listen. Happy New Year 🎇

Click to listen to the New Year's Eve Sermon