Merry Christmas & Happy New Year!

I hope everyone has had a lovely Christmas. We've had a very relaxing, homebody kind of holiday. My mom (Grandma Wendy) was here for about a week over Christmas and we went to Chuck's mom's (Granny Joan) house for Christmas dinner. This past Thursday I actually thought it was the weekend, and most of us wear our pjs most of the day. Perhaps the only sad member of our family is Millie who is not getting quite as many walks as she usually would, but she rolls with it in her own laid back fashion. 

Eric did have an appt at clinic on Wednesday. His hemoglobin has fallen a little, but no need for a transfusion yet, and his platelets actually increased. It was a quick appointment which left me free for a nice sanity-break lunch with my mom and aunts. We go back again next Wednesday, Jan 3. 

Since Eric will soon have to have his port (under the skin) switched out for a CVC (on top of the skin), I wanted to get him swimming while he can. I have tried to book a Swimply for tomorrow, but not getting any response, so we will see. However, I've also booked a local hotel with a pool and waterslide for a night next week. We did one of these staycations after Joel got Covid for his 10th birthday and the kids thought it was an absolute blast so hopefully they will enjoy it again.  

I took everything off the Christmas tree last night, while Eric and I watched Harry Potter and the Philosopher's Stone (and I said "we were there" and "oh we were there" and Eric said "moooooooommmmmmmm.") I put it all on the dining room table and now I am just waiting for the magic fairies to come and put away all the decorations. I can dream, right? 

Over the break, I organized all of our vacation photos into a folder on One Drive. In case anyone is interested in looking through 400+ photos of our Disney vacation (don't worry, I won't hold it against you if you aren't), here is a link to the photos: 

 Make A Wish Trip 

The link will expire on January 31, 2024. 

I have included a couple of my fave photos from our trip as well as one from Christmas morning. 

Wishing everyone a safe and happy New Year's Eve celebration! 

Next Steps

I can't believe it's only 4 days until Christmas and the kids are still in school - so crazy! Eric had his Holiday Concert at school on Monday and Tuesday of this week (see pic; note I tried to influence his wardrobe choice but was unsuccessful). Joel is apparently too old for Christmas concerts now. 

Eric had his regular weekly check in at clinic yesterday. He remains stable; the blood and platelet transfusions from before Disney World are still holding. Additionally, he had a chest CT to ensure we aren't losing any ground on the GVHD in his lungs since we've reduced his immune suppressants. According to the doctors, his lungs "maybe" look "slightly" better; gotta love the commitment! But better is better, so we'll take it. 

I had mentioned previously, that the treatment that we tried a couple months ago was not successful in stimulating the donor cells to eliminate the abnormal cells. In fact, his follow up biopsy showed 80% abnormal cells and DNA test shows that he only has about 10% donor cells left. This means that Eric is losing his graft (the bone marrow donation) and the abnormal cells are taking over again. The abnormal cells are not cancer cells. They are malfunctioning marrow cells that do not allow his body to make correct cells, which then do cause cancer cells to develop. At this time, there are a few blast (cancer) cells circulating in Eric's blood, but they have not taken off. 

In terms of next steps, Eric's doctor would like to do another bone marrow biopsy early in the year since its the only way to actually "see" what is happening in his body. We need to ensure that the blasts are not more prevalent in the marrow, than in the blood. Regardless, the only option to treat Eric's disease is another Bone Marrow Transplant (aka BMT or Stem Cell Transplant). We already know that we are very lucky that Eric has a number of matches on the donor registry, and some have even been worked up already since his last transplant was (just) less than a year ago. We will have a better idea of timing following the biopsy in early January. 

In the meantime, we are thrilled to be able to spend Christmas at home together as a family and that's what we will be focusing on for now. 

Merry Christmas to all of our amazing friends, family and incredible support network. 

Florida Day 6 & Home

 Home and semi-recovered; time to catch up on the blog. 

Day 6 Animal Kingdom & Hollywood Studios

These were the 2 parks that we hadn't yet seen. Walking into Animal Kingdom there was a woman on stilts dressed as a tree/plant that looked very cool (see pictures). We went straight to a 3D movie called It's Tough to Be a Bug, that surprisingly wasn't too creepy for this arachnaphobe, where we learned that bugs outnumber humans 200,000:1. The movie was inside the tree of life (I think that is what it was called) that had animals carved all over it and looked amazing. We had the weirdest 360 picture taken outside of it (see pictures). Next Eric wanted to head to Dinoland, where he also had a sudden NEED for popcorn after 5 days at the parks without even mentioning it. We went on a really cool ride there called Dinosaur. It was simulation but lots of rip roaring action and didn't require me to close my eyes. Then the kids went on the very tame Triceratop Spin on their own while I got Eric his much demanded popcorn. Walking through Animal Kingdom, we saw a character meet and greet for Moana and they generously allowed Eric to go to the front of the line to meet her. Next we went over to the world of Pandora. The kids haven't seen the movies and Chuck and I have only seen the first one, which I actually can't really remember. However, that didn't stop Chuck and Eric from doing The Flight of Passage, a simulated ride where they fly on a banshee. That one was a big nope for me and Joel kept me company. After that ride we did the very, very tame (even boring?) Na'vi River Journey. We were about to leave the park and head over to Hollywood Studios when Eric spied a rollercoaster on the side of a mountain. Turned out it was called Expedition Everest so we headed straight for it. That was another nope for Joel and I. Instead I got new sunglasses after dropping mine and breaking a lens and Joel got a plush monkey that hangs around his neck. Now we were headed out of the park, knowing we missed lots of things, but excited to check out Hollywood Studios. Walking into Hollywood Studios, Eric had to get one of those light up bubble blowing Mickey things that we'd seen everywhere; this brought back memories of the balloon, as I spent the rest of the day eating bubbles. Chuck was very focused on getting to the Star Wars area, but it was at the back of the park, so we decided we'd see what we see on the way there. We started off with Mickey & Minnie's Runaway Railway, a slightly nauseating simulation ride. Coming out of there we got a bit turned around but found ourselves in Toy Story Land which was a super fun place to be: everything was very brightly coloured and a lot of it was made of Tinker Toys. Eric wanted to go on the Slinky Dog Dash Rollercoaster which was described as a family friendly ride with small drops so Joel and I decided to give it a whirl. In the line, watching the cars whip by on the track I was beginning to have my doubts but put on a brave face for Joel. We got loaded into the car and then waited and waited and waited... Chuck finally realized they were cleaning up vomit in the Slinky Dog behind us before rolling it forward. Now I really had my doubts! It turned out to be really fun and I only had to close my eyes a little. Joel also thought it was fun and was happy he didn't fall out of the coaster! Next on to Alien Swirling Saucers, also nauseating. And finally off to Star Wars for Chuck's Millenium Falcon: Smugglers Run. It was a simulation ride and the seats we were in didn't move so I figured I could always close my eyes if I needed. In the orientation they wanted 2 pilots and 2 gunners. Unfortunately the kids thought being gunners sounded fun which left me as a pilot. Turns out its pretty hard to pilot the Millenium Falcon with your eyes closed. Next Chuck and Eric went on Rise of the Resistance (which took forever!) while Joel and I sought out the store where you can build your own light saber, Joel built a light saber and then found some food for dinner. Chuck and Eric eventually met us for dinner and then we headed back so Eric could also make a light saber. I had hoped to make it to 9pm for Fantasmic, Mickey's night time spectacular, but by about 6:30/7pm the kids were done, so we hit a souvenir shop and made our way out of the park and back to GKTW. 

Day 7: GKTW & Travel

Our flight wasn't until almost 6pm, but we had heard it was best to actually arrive at the airport 3 hours early to return the car and because its a huge airport, so we planned to leave GKTW at 2:30pm. There is lots to do at GKTW that we hadn't had time to check out because we'd been so busy with the theme parks, so that is what we planned to spend the day doing. Unfortunately, we had to be out of our Villa by 11am because they were fully booked, but they have a lovely hospitality suite available for families with late departures. It is designed for up to 4 families to share and has 2 bedrooms, 2 bathrooms, 2 kitchens and 2 living rooms. We got there right at 11 and took over a bedroom as a temporary homebase. It turned out there was only one other family there that day and we didn't even see them. Before checking out of our Villa, we went to breakfast and it turned out that Mickey was there for meet and greets so we got our picture with him before breakfast. After checking out, I wanted to ride the little train around the site, but unfortunately it was closed for maintenance, so we did Dino Mini Golf instead. Both kids managed to get a hole in one, while neither Chuck or I did (no surprise for me as I am not skilled at golf, or hand-eye coordination.) Next the kids wanted to go in the pool. It was about 23 degrees but cloudy and very, very windy. It was not at all unpleasant to sit beside the pool, but Eric wanted the whole family in the pool. The pool is heated but once your head is wet and out in the wind, it is horrifying. After some family play time, I escaped for a hot shower. When I got back, Chuck escaped for a hot shower. Meanwhile, the insane children are still happily playing away in the pool. We dragged them out for hot showers, which left us with just enough time for lunch before heading to the airport. 

The airport is huge, and we had to ride two terminal links to get from the car return to our gate, but it was all relatively straight forward. The flight from Orlando to Calgary was also uneventful. We were pretty tired when we arrived in Calgary and had to clear customs but it was a short layover and soon enough we were on the plane to Vancouver. Except, flying through Calgary in the winter is such a pain; we ended up delayed almost an hour for de-icing. Arrived in Van, picked up our luggage, shuttle to Park N'Fly, pick up car, drive home and arrive shortly before 2am - that is 5am Florida time - and fall directly into bed. 

Friday morning Eric had a check up at clinic, and in my sheer exhaustion, I managed to miscalculate what time we had to leave. So I woke up and said "we need to leave now!" Luckily (?) Eric had been up since 7:30am, so he was actually awake. Also, thanks to an amazing neighbour, we had milk, bread, fruit, etc. We went to the lab for bloodwork and then over to the oncology clinic where our entire team wanted to hear about the trip, but Eric on 5.5 hours of sleep was not feeling too chatty. They skipped to the good news and let us know that the blood and platelets he'd loaded up with before the trip were still holding and he didn't need a transfusion so we could go home! We did have one stop first; Granny's to pick up Millie who was very excited to see us. 

We've spent the rest of the weekend (it's Sunday morning now) just chilling, mostly in our pjs, recovering from our crazy, amazing trip and long, late flight home. I am pretty sure the kids are going to be shocked when I tell them they have to make lunches tonight and get ready for school tomorrow. Isn't it Christmas now???

Florida Day 4 & 5

Day 4 Disney World Magic Kingdom

Monday was our 4th day in Florida. We had tickets to a pre-fireworks dessert that comes with VIP fireworks viewing. it started at 6:30 with fireworks at 8. Plus we were exhausted and the kids were asking for a break so we decided to have a slow start. Eric had an appt at 10am to view his star. next he discovered the spa isn't just for girls; he got a sparkly blue transformers tattoo and red stripes in his hair (OMG the red hair spray dyed his scalp more than his hair and I still can't get it off!) We had lunch at GKTW and then headed out to Magic Kingdom at Walt Disney World. We didn't arrive until 2pm and didn't really have any plans. The first thing we did was buy one of those huge clear balloons that has a mickey shaped balloon inside it, red in Eric's case. It was $16 USD and spent the entire day smacking me in the head as I pushed his wheelchair. What a mistake! We ended up walking right into a front row spot for the parade. It was so magical; the floats are HUGE. While waiting for the parade to start, Eric checked out the map and decided that we must go immediately to the Seven Dwarfs Mine Ride in Fantastyland. It was a smaller roller coaster with just small drops so Joel and I were convinced to ride as well. It was a lot of fun to have all of us together on the ride and not too scary. We wandered from Fantasyland into Liberty Square for the Haunted Mansion ride; there were lots of ghouls and ghosts, but not scary at all. From there back to Fantasyland for the Little Mermaid ride. It was a bit lame but the music was lovely. Next was Tomorrowland, which is now perhaps Eric's favourite place on earth. We started with the Speedway where Eric and Joel got to drive (with the steering wheel on the wrong side of the car!) and Chuck and I were passengers. Eric kept telling me he was a good driver after but he sure hit the rail a lot. From everywhere in Tomorrowland you can see the Astro Orbiter which sticks up really high and is super colourful so Chuck and Eric did that. It was not a roller coaster, but seemed a bit high for Joel and I. Its really unfortunate that I've passed all my complexes on to Joel, but at least I had company??? It was now time for dessert! There were cookies the kids could decorate, chocolate covered strawberries, fruit, cheese, crackers, chocolate mousse, crepes, cookies and cream cheese cake, etc. Plus lots of juice (including POG!), hot chocolate, coffee, tea and alcohol!!! I had some bubbly. Next off to the fireworks, with about 40 min to wait. UGH. But we had a great spot. We were in the VIP area, plus got the wheelchair section. And Eric let me sit in his wheelchair and then sat on my lap, for warmth. Did I mention it was freezing?!?!? After the torrential rains the night before, it was really cold on Monday all day, and by the time the fireworks rolled around it was only 11 degrees. We were wearing our sweaters, but needed blankets, parkas, mittens and toques! The fireworks were incredible, indescribable, so amazing and enchanting. 8:20ish, freezing to death, but Eric needs to go back to Tomorrowland for the People Mover, Tron and Space Mountain. Joel and I did the People Mover, but skipped the other two. I figured Eric would do Tron and then want to skip Space Mountain (after the VelociCoaster) but apparently not; they aren't as scary. He loved Tron and it just energized him for the next ride. Joel and I met Eric and Chuck coming off Space Mountain and Eric says BEST RIDE EVER!!! It was finally time to leave Magic Kingdom for the day, but we wanted to stop at the Emporium, the biggest Disney store, on our way out. Unfortunately, there were 12 million people in the store, so we booked it out of there and to the exit. Despite being told not to leave immediately after the fireworks or right at closing because it would be too busy, we discovered it was 10:01 (park closes at 10) as we were walking through the exit. It wasn't too bad though. A small wait for the monorail to the parking lot and we are lucky enough to get preferred parking so it was a quick walk to the car. Back to the Villa and by the time we get everyone organized for bed it was well after 11. 

Day 5 Disney World Epcot & Magic Kingdom

We had a bit of a slow start after the late night and actually had to send a runner (me) to get breakfast to go before it closed at 10am. We decided to do Epcot today for a half day and then park hop to somewhere else after. We got to Epcot about 11:30. The giant ball thing, that probably has a name, is pretty cool, especially at night when it lights up. We went on Spaceship Earth, inside the ball thing, right at the entrance. Then headed over to Norway to do the Frozen Ever After ride which was great. Next to France for Remy's Ratatouille ride. That one was 3D/4D and slightly nauseating for me. Along the way Eric got his face painted (like a red T. Rex) we had some funnel cake, and a slushie. It did seem like all of Epcot was alcoholic slushie beverages, amusing since Eric just wanted a slushie. That was about it for Epcot for us. We walked all the way around the World Showcase loop, but by then we were done so didn't want to venture off into the other areas - World Nature, World Discovery, etc - and we didn't want to watch any shows after that Spaceship Earth ride we started on was a bit long. Epcot was just a "meh" for us. From Epcot we could have park hopped to Hollywood Studios or Animal Kingdom, the parks we haven't been to yet. However, our trip director just had to go back on Space Mountain so we took the Monorail and the ferry boat over to Magic Kingdom. The weather was quite a bit warmer than the day before, which I did tell my family after checking the forecast, but they all wore pants and long sleeves after the day before, and then were too hot! It was about 4pm when we made it into Magic Kingdom. Magic Kingdom was closing at 6pm for a special ticketed event - Mickey's Christmas party. We split up with Chuck and Eric heading straight for Space Mountain. Joel and I went to the Christmas store and got an ornament, picked up a popsicle and a mickey shaped pretzel, Joel got a Beymax stuffie and then we went to the sweet shop. Chuck and Eric rode Space Mountain and then went to Tron. They ended up riding Tron twice because the staff hadn't moved Eric's wheelchair from the front of the ride to the exit yet, so just asked if they wanted to ride again. They met us in the sweet shop and the kids bought all the sweets! We were leaving the park a little after 5 but had to take the Monorail back to Epcot to the parking lot. On the way home we decided to stop at Target because why not? We were very exciting and got the kids some new pjs (Pokemon for Eric of course) because they keep growing and everything is too small! Back to GKTW for late dinner, baths/showers for the boys - one of which was covered in face paint - and then off to bed! 

Florida Days 1, 2 & 3

The days are so long and busy, that I haven't even had time to think, let alone write about them! 

Day 1 Universal Studios

I had read that the Hogwarts Express was going to be closed for a week starting Dec 9, so we had to go to Universal Studios our first day here (8th) so that we could ride the Hogwart's Express! Unfortunately my determination to get to Harry Potter World made for a bit of a chaotic morning since it is at the back of the park, and spans both the Universal Park and the Island of Adventure Park. We did eventually manage to get ourselves sorted and saw Diagon Alley where Joel and I got ice cream at Florian Fortiscue's and the kids got wands at Ollivander's, checked out Knockturn Alley and Eric did a spell there, we saw the fire breathing dragon that escaped from Gringott's (though didn't do the ride). We saw Kreacher peaking out of a window at #12 Grimmauld Place, went through the brick wall between platforms 9&10 at Kings Cross and rode the Hogwart's Express. Chuck and Eric went on Hagrid's Magical Creatures Motorbike Adventure (twice!) while Joel and I got some butter beer. 

We did eventually leave Harry Potter World and went to the Land of the Simpsons where the kids went on Kang & Kodo's Twirl n' Hurl (Simpsons), and we all went on a simulated Simpsons Ride (some of us with our eyes closed). We had a GIANT pink Simpsons donut that we split 4 ways. 

We also all went on the Fast & Furious simulated ride (eyes open this time), and we all went on Jimmy Fallon's Race through New York (eyes closed again). We did the new Villain-Con Minion Blast; I didn't really get the point, but my 3 gamers seemed to enjoy it. Back over at the Island of Adventure Park and nearing the end of what was a much longer day than I had anticipated, Eric decided he was feeling very brave and he took his Dad on the Jurassic World VelociCoaster. He came off it smiling and said he'd do it again, but not anytime soon! Daddy came off it looking a little green. 

The kids had a quick cat nap in the car on the way back to the Villa and headed straight for the pool, without even stopping for dinner. We finally dragged them out of the pool about 9pm, and grabbed a hotdog from the poolside snack bar.

Day 2 Aquatica 

We get specific passes included with our trip, but there are others that we can request based on availability. Eric was desperate to go to "A Big American Water Park" so we traded our Sea World pass for an Aquatica pass. Aquatica is actually owned by Sea World and is next door. We chose to go Saturday because it was the nicest weather day. Someone at the resort here said it wouldn't be too busy because it was too cold for Floridians (it was high 20s Celsius). Knowing that chairs and shade are at a premium at our (small Canadian) water parks, I booked a cabana morning of, but turns out I didn't need to. There were tonnes and tonnes of chairs and HUGE umbrellas for shade. However, the cabana did come with 10 bottles of water, a locker in the cabana and towels (which for people from out of town is super handy!) The entire family had a blast. Chuck and the kids went on every single open slide in the park. I only opted out of one; a free fall where you basically get into a teeny see through claustrophobic elevator and then the floor drops out from underneath you. And I only had to close my eyes on 3 of the other slides 🤣 We stayed at that park until closing and stopped at Walmart on the way home - yes, in our bathing suits. We wanted to get some Disney swag at off-park prices and of course we needed the giant milk jug shaped box of goldfish crackers. After dinner, the kids wanted to check out Amberville where we are staying (Give Kids the World Village aka GKTV or the Village). There is an arcade, air hockey, pool, lego, a massive model train set and village, mini golf, 3 rides and some remote control boats on a pond. The kids definitely have more energy than me; I'm encouraging them to go to bed so that I can go!!

Day 3 Universal Studios

We really didn't have any plans beyond those first two days which were dependent on the Hogwart's Express and the weather, so we weren't initially sure if we would go to one of the Disney Parks today or back to Universal. In the end Universal won out due to Eric's NEED for Hagrid's motorcycle ride. But first, we had breakfast with Darth Vader, Storm Troopers and R2D2! Characters from both Disney and Universal come to GKTW for meet and greets. 

At Universal Studios, we only did Adventure Island and didn't venture to the Universal Park and we were much more methodical and organized about it; sounds boring, but honestly the park is a circle so it makes for more fun, just also efficient fun! We started in the Superhero area where we saw a few characters (Captain America, Storm), but Eric didn't want his picture with them, and went on the Spider-Man 3D/4D ride which was really cool (and my eyes were open for most of it!) TA

We left Universal Studios a little early, apparently at rush hour unfortunately, to get back to GKTW for Eric's star marking appointment. All the wish kids who stay here get a star and they decorate it or write their name on it and the fairy gives it to the giant to put up in this tall tower to stay forever. It is really magical and we get to go see his star in its forever place tomorrow. Also, it turned out our timing leaving Universal was good because there was a torrential rain storm pretty much as soon as we left. There was even thunder and lightening as we were leaving the star making.  

If you made it this far into my exhausted vacation brain dump - congratulations :) 

It has been a whirlwind few days and also absolutely amazing. We've got our 3 days at Disney up next! 

We Made It!

Yesterday I was super excited to post 1 day to go and that we got the final go ahead! However, after 8 hours at the clinic (Eric got blood and platelets to make sure he had the best possible week ahead), plus an hour drive there and a 1hour 20 min drive home, last minute packing and prepping the house, taking the dog to Granny's, getting to park n'fly and finally checking into the airport hotel, I was exhausted and fell asleep early! Good thing since we had to get up at 4:30am to make our 6am flight. We had a layover in Calgary where we basically just had enough time to clear customs before boarding our flight to Orlando. That flight did end up delayed as we had to wait for de-icing. Arrived in Orlando a little after 5 local time but there was a medical emergency on board and we were met by an ambulance. I think maybe a woman was in labour. She kept rubbing her very pregnant belly and was making faces of terrible discomfort. Anyhow, we eventually made it off the plane, and then on to the tram to the main terminal where we were met by Tom, our Give Kids the World Greeter. Eric was excited to be met with a sign with his name on it! Tom took us to find our luggage and our rental car and gave us directions to Give Kids the World. We made it here, though perhaps did some illegal toll-related things, completely accidentally (they really need to work on their signage). Instead of checking in, we went directly to the Christmas Party which happens every single Thursday night year round. The kids decorated cookies and we all took a pic with Santa. (They have professional photographers here and I get all the pictures uploaded to an app so those will come later.) In the meantime, Eric wanted his picture taken with all the inflatables. Once we met Santa, we were able to check in and have orientation. This place is truly spectacular. It is absolutely covered beyond imagining in Christmas lights, including a Christmas tree in our villa. We have a 2 bedroom, 2 bathroom villa with a kitchen and living room and laundry. There is ice cream available from from first thing in the morning until 9:30 at night. There's a splash pad, 2 pools, an indoor movie theater and an outdoor movie theater, fishing, horseback riding, and I can't even think what else. Even though it's not quite 8pm at home, being up since 4:30am and all the travel has us all ready for bed! 

3 more days!

3 Days to Disney World!!! 

We've been keeping busy the last few days. Eric had a clinic appointment on Thursday and his hemoglobin had dropped to 76 and he was getting headaches, so he had a blood transfusion. He felt better immediately and was bouncing off the walls with his newfound energy! It was actually really lucky that he asked to come home from school early on Wednesday, because it turns out a nasty stomach bug was racing through the school, and Eric's class in particular, and he managed to avoid it. Since we stayed home from school on Friday to avoid the bug, we decided to visit our new cousin Connor. Eric was smitten! 

Unfortunately, Friday evening Joel had a brush with that dreaded stomach bug. With our trip only 5 days away, and not wanting Eric to get sick, Joel's been quarantined in his room all weekend. On any given day, the kid would be thrilled to spend the day in his room with all the electronics, but I guess when you are banished, it isn't as desirable. Luckily, Joel didn't get sick, so his exile and my obsessive lysol'ing wasn't necessary after all. After that scare, neither kid is going to school this week! 

Eric was back to clinic again today. The team wants to keep a close eye on him with our big trip on the horizon so he's got clinic Monday and Wednesday this week. Luckily today was quick and easy! His bloodwork was good today after the transfusion Thursday, which bodes well for being away for a week. 

Now if only we were packed...