Camp Goodtimes & Clinic Update

The boys spent a week at Camp Goodtimes and had such a great time! The theme was Mario Brothers and I heard a lot about Bowser. In addition to Mario activities, they had backwards lunch, pj breakfast, boardgames, watermania, swimming, water trampoline, canoeing, kayaking, low ropes, high ropes, and camp "fires" where they learned lots of songs and chants. Eric learned to make friendship bracelets, which inspired me to relearn (and order thread from amazon). 

This week the kids have a Code Ninjas camp, Modding with Minecraft, for a couple hours in the afternoon and otherwise we're planning for a pretty chill week. 

Eric had a check up at clinic yesterday. His counts are recovered enough (ANC is 1.4) to start another round of oral chemo. So he started that yesterday and he'll finish September 3. 

Unfortunately, Joel woke up this morning not feeling well. We know covid is going around, so we thought it would be prudent to test him. As far as we know Joel hasn't been in contact with anyone who has covid, but the test was positive - ahh! So that has quickly changed our plans... no more Minecraft camp this week for either kid and no longer heading out of town on Sunday. Joel is isolated in his room and we're just hoping no one else, especially Eric, gets it. 

Busy, Busy!

Wow! We've been so busy enjoying our summer! Since my last update...

Starlight Children's Foundation gave us tickets to see the BC Lions play the Saskatchewan Roughriders at BC Place. We decided to make a day of it and went for lunch at Steamworks and then toured around Gastown, went to the Vancouver Lookout at Harbour Center and checked out the Olympic Torch in Coal Harbour before watching the Lions win! 

We went to Capilano Suspension Bridge for the first time! 3 of us are terrified of heights (ok i am the only one who is terrified, the boys are just reluctant and Chuck says he's scared too but to just breathe through it - not helpful!) so it never seemed like a good idea before. However, Eric got a "world passport" from his Make-A-Wish trip that grants us free access to the bridge and I like free! We did the Bridge, the Treetops Adventure and the Cliff Walk and then had lunch at the restaurant. We all enjoyed ourselves; it was a great family adventure. I didn't see a lot of sights as I stared straight ahead, but I am pretty proud of myself for actually doing it. Eric's favourite part was the Treetop Adventure. and he wanted to do it over and over.

Next we went to The Outdoor Experience Water Park (aka Otter Co-op Water Park) in Aldergrove with family friends. The boys ran around together enjoying all the amenities while the mom's floated in the lazy river - best playdate ever! 

We've made it to last Wednesday, July 17 when Eric had his photo shoot for the 2025 Pet Therapy calendar as the Mad Hatter with Edward the Bunny. I do have one photo but I am not allowed to post it, so if you see me, please ask and I will be happy to share with you. It is the cutest thing ever! Following the photo shoot, we headed to the hospital to check in at clinic. Eric still feeling great, but counts aren't recovered yet. They've increased just a teeny little bit over the previous week. 

Next up is the BIG DAY - Friday, July 19 - Eric's 9th birthday!!! He had a few friends over for a backyard birthday party. The kids played in the pool, had a water balloon fight, jumped on the trampoline, smashed a pinata and ate pizza and cake. He rested for a couple hours, building all the Lego he was given for his birthday, and then Granny, Auntie Jenny and Uncle Dave came over for a family birthday celebration. We had more cake and Eric received more Lego. He was one happy kiddo and had to start building the new Lego sets ASAP!

The next morning, the boys and I drove to Vernon to join Grandma and Auntie Grandma (Great Aunt Sharon) who are there for 2 weeks thanks to a home exchange with Grandma's house in PG. It was HOT! Too hot to do anything but play in the lake and wat ice cream, which was ok with us! I did take the kids to Splashdown Vernon one day and they had a good day, but we only stayed about 3 hours as it was quite busy and waiting in lines for water slides is not fun. Of course, that left the afternoon free to play in the lake some more. Our last day there was much cooler and a little rainy, so we checked out Kekuli Bay Provincial Park where Chuck and Joel and I camped when it was brand new and Joel was only a few months old. We wanted to see how it had changed over the years, and specifically if the trees had grown to provide more shade. Then we checked out the house that Grandma and Auntie Grandma grew up in. We also saw their elementary and middle schools. We went to a produce market where we bought local cherries, BC blueberries and US plums (sad, but still yummy.) Finally, we went to Davison Orchards where the kids had ice cream and we checked out the animals, had lunch - PIE! - and browsed the market. We got home Thursday evening and were very happy to see Chuck and Millie after 5 nights away. 

The reason we came home on Thursday was so that Eric could have a check up at clinic on Friday, yesterday. His dr was away yesterday, but left very specific instructions: if his ANC was above 1.0 and platelets above 100, he would restart the Venetoclax (oral chemo). His ANC was 0.9 and his platelets 90-something, so he doesn't have to restart yet. But it is good news that his counts are still coming up. He is going away to camp on Monday and his doctor didn't want to start until after camp, so this will really only be a few day delay, assuming his counts will be up over 1.0 and 100 at his next appointment. 

So that's what is up next...both boys are going away to overnight camp for the first time from Monday to Saturday. I am so excited!!! Due to camp, Eric's next check up will be Wednesday, August 7. 

Clinic Check In

Eric is doing great; full of beans! He had his check up at clinic yesterday and his blood counts are somewhat improved. His ANC/neutrophils (germ fighting white cells) are up to 0.4 from 0.1. It is still a risky level, but definitely on the upward trajectory. Unfortunately, his platelets are down a bit. He does have quite a few bruises, but no active bleeding. Eric's energy and enthusiasm don't seem to match his bloodwork. He seems like he's 100% most of the time. His doctor wants to wait for a more fulsome count recovery before restarting the Venetoclax (the oral chemo treatment.) He said there is no urgency to do another round. Additionally, the team has decided to monitor his disease through peripheral blood, rather than doing a bone marrow biopsy after every round of treatment. They are confident they can successfully monitor this way and not put Eric through the repeated biopsies. They took additional blood at his last clinic appointment on July 2 to complete these tests and we got the results yesterday. There is no sign of the abnormal cells that mark his disease and his blood is still showing full donor DNA. It is always hard to wait for these results, but such a relief to get this reassurance. 

We have been busy in the last week. We camped at Bridal Falls Camperland RV Resort. At the resort, we all went in the pool, Chuck and the kids played mini golf and the kids ate lots of ice cream. We were lucky enough to be able to have a campfire and make s'mores of course! On Thursday we spent the day at the Bridal Falls Waterslides and the Blain Family joined us. The kids played hard from 11am until after 5pm and had such a fun day on the slides. We sent a picture to Eric's team at the hospital and they loved to see him having fun and even better, practicing excellent sun safety. Meanwhile, Joel's shoulders and the tops of my feet got burnt. We know better! After the long day at the slides we had dinner and then did the short hike to the Bridal Veil Falls in the Bridal Veil Provincial Park. I've driven past 100s of times, but never stopped and it is definitely worth the stop; the pictures do not do it justice. 

This week the kids have been at a day camp run by WCK (West Coast Kids Cancer Foundation.) It is such a great organization in support of families living with childhood cancer and blood disorders. They stock a freezer full of microwave meals at the hospital and snacks for outpatient visits; they deliver quick and easy freezer meals to our house once a month to make long days easier; they make fresh smoothies for inpatients at the hospital on Sundays and give us cozy family pjs, plus they run this awesome day camp! The boys have tie-dyed, done martial arts and wood working, had a visit from the White Caps and tomorrow they have a dunk tank! 

Clinic Yesterday

Eric and I visited the clinic yesterday. Yes, on a Tuesday! It is not his doctor's regular clinic day, but our Nurse Practitioner had us come in for a count check before heading out to camping/waterslides. The bad news, his platelets and ANC have both dropped since last week. Actually his ANC/Neutrophils (germ fighting white blood cells) are basically non-existent at only 0.1. The good news is that they are still letting us go camping and to the waterslides! Our Nurse Clinician drew this picture for Eric:

The team still believes the drop in blood counts is a result of the most recent treatment and are planning to wait for his counts to recover before starting the next round. We have to be prepared for the next round to have a similar effect as well and hopefully that won't impact our summer too much. Camping prep now includes packing a thermometer and knowing where the closest hospital is, but we get to go camping for the first time in more than 1.5 years!!! 

Last Friday, I took the kids to The Outdoor Experience at the Aldergrove Community Center and they loved it. They thought it was a pretty amazing way to kick off summer vacation (after the previous day of pouring rain!) though Eric did get stung by a wasp x2!!! It was the first time he'd ever been stung and luckily there was no reaction beyond it hurting. I don't have many pics because we were busy playing, but here are the kids in the lazy river:

Over the long weekend, the kids kept busy riding bikes and playing a new game they've invented called Hide & Squirt. In case it isn't obvious, that is hide and seek with squirt guns.

We're back at clinic next week. Since his counts are low, we have to go every week for now :( 

Check Up at Clinic Today

Eric had his check up at clinic today to check his blood counts after they tanked last week. The good news, his platelet count is up, not normal, but up, which shows that his body is making fresh platelets. The bad news is that his ANC is now in the toilet. It is only 0.2 and those are his germ fighting white cells. While my brain is shouting relapse (re-relapse?) since he hasn't had this response to this treatment in the past. However, our Nurse Practitioner has assured me this is a normal response to the chemo and likely just a result of the repeated rounds. 

We're planning a couple nights camping next week to enjoy some water slides and I thought this might throw a wrench into the plans. So far, just a small wrench. The team wants him to come back again next week for a count check, before we go camping, so we've had to push our trip back one day. The real wrench would be if this significantly impaired immune system resulted in a fever, in which case, with counts this low Eric would end up in hospital and we'd have to cancel. So fingers crossed 🤞

In other very random, but good, news...the pet therapy program at the hospital is creating a calendar for next year with the pet therapy pets alongside past and present patients. Eric LOVES all animals and the pet therapy program went a long way to brighten his time in hospital. Last week when we saw the poster looking for patients to participate, Eric immediately told me to apply. We heard this week that he had been selected and he had a costume fitting today. He is going to be The Mad Hatter with Edward the bunny. Stay tuned for photos in the (distant) future. 

Tomorrow is the last day of school! Hopefully I will have loads of fun summer adventures to share 🤞

Catch Up

Well it's been awhile and we have been BUSY!

Starting with today, Eric had a check up at the hospital and his platelets have taken a nose dive since his last visit 9 days ago. He narrowly avoided a transfusion, but since he wasn't actively bleeding, we just have to go back early next week to check in instead. The platelets dropping is a common side effect of chemo, but Eric has sailed through on this treatment in the past. His Nurse Practitioner today said that he's had a lot of chemo and its probably just taking a toll on his body. He is definitely more tired, and more likely to get a bit snippy as a result. Of course, he is generally still in good spirits, trying to convince one of us to go in the (freezing) backyard pool with him this afternoon! He is on Day 19/28 of this round of oral chemo treatment. While we were in today, Eric's Nurse Clinician drew this picture of him and hung it on his door. 

Also today, before the hospital, Eric finished building this Star Wars LEGO ship. He's been begging me all afternoon to take him to the LEGO store in Surrey so he can buy a new set. His LEGO addiction is still going strong. 

Joel's been away at camp with his school for the last couple days. He's also grown again and is now 5'5". He's basically eye to eye with me and I don't like it! I expected him to get taller than me when he was 16, not 12! 

Last weekend, we went to Sicamous where we stayed in a cabin at the Sicamous RV & Cabin Resort courtesy of Starlight Children's Foundation Canada. It was absolutely pouring rain on Saturday, but the staff spoiled us with a pancake breakfast, burger BBQ and s'mores. They tie-dyed shirts with the kids and spent the day teaching the boys to play pool. During some lighter rain, we got out for a scavenger hunt, had a campfire and rode on the resort's train. The weather was much better on Sunday and we got to explore the area attending The Enchanted Forest and The Crazy Creek Hot Pools, followed by relaxation around the campfire. We are so grateful to Starlight for providing our family with this opportunity and to the staff at Sicamous RV & Cabin Resort for making us feel so welcome.

Our rustic cabin had a lovely porch swing (and a lot of mosquitos!)

We checked out Dutchmen Dairy in Sicamous and tried out some ice cream

Eric and I didn't realize this was a baby cow until we went to the other barn and saw the full size cows

The train at Sicamous RV & Cabin Resort. Eric rode around and around and around on it, dragging different passengers with him every time

Chuck's turn on the train

We even got to watch the hockey game

A waterfall only a few min walk from the resort

The staff did tie dye with the kids

Gophers everywhere. Millie really liked to put her head in all their holes

The boys thought perhaps Humpty Dumpty was pushed?

Millie did not like these horses. She barked at them. A lot. 

Chilling at The Enchanted Forest

Such a cool place; you can go into all the little buildings

The Cow Jumped Over the Moon

My favourite sign of the whole weekend

Chuck and Joel climbed to the top, Eric halfway. Millie and I stayed on the ground where we belong

Mama. Take a picture. Hurry up. This is really uncomfortable. 

Many s'mores were consumed, followed by some colourful flames

On Friday before we left, Eric had sports day and the classes performed the Hip Hop dances they'd been working on for a week.

Earlier in the week, Uncle Jon came to visit for a few days and Eric entertained him by playing in the (freezing) backyard pool.

The previous weekend, Eric finished up his IV treatment and it was an epic birthday party weekend! Saturday morning, Eric went to a birthday party at Lush where he got to make a bath bomb. Then we went to the hospital for his treatment and we asked for his port to be de-accessed so he could go to a birthday backyard pool party in the afternoon. That party was 4.5 hours long and when I went to pick up Eric, he was STILL IN THE POOL! The next morning, back to the hospital where Eric had to have his port re-accessed, which he thought was totally worthwhile for the chance to swim. He had his last (7/7) IV treatment and got de-accessed again. We went from there to Granny's to celebrate some family birthdays. I thought Eric would be exhausted and cranky after that super busy weekend, plus the treatment, but he wasn't at all. He got home on Sunday and immediately wanted a bath so he could use his new bath bomb!

Only 4 days of school left until Summer Vacation!

Day 4 of 7

Yesterday was Day 4 of 7 of the IV treatment (and Day 4/28 of the oral treatment.) Yay! More than halfway! Eric is doing quite well. He's been playing outside in the afternoons and feeling pretty good. He was a little nauseous last night around dinnertime. I gave him an anti-nauseant and within 30 min he was feeling better and building LEGO. We are both tired, Eric from the treatment and me from the driving. Aside from Monday which took longer just because it was the first day, the appointments have been nice and quick at only an hour, but that is about 3 hours round trip. 

We did get results of Eric's bone marrow biopsy and its still great news - all donor DNA and no evidence of the bad cells. Woohoo! 

Eric also had an ECG on Monday and the abnormality that had appeared in his heart rhythm is gone. There are some meds known to cause this so the Dr wanted to recheck now that Eric has been off the meds for awhile to make sure it had returned to normal. 

Everything is looking good! 🤞

Kristina, the outpatient Child Life Specialist has been spoiling Eric with LEGO all week.