Results

The biopsy results are back and they are not as we had hoped. The treatment did not work and the abnormal (dysplastic) cells in his marrow have increased from 13% to 80%. 

Eric remains stable so we can still go on our trip to Disney World. We are going to focus on that and worry about next steps when we return. We leave a week today!!!

Disney on Ice & Biopsy

We were so lucky to be gifted Disney on Ice tickets from the Make A Wish Foundation for this past Saturday evening. It was Frozen and Encanto and was such a great show that we all really enjoyed! It was the first time Eric went to a large event in over a year. I was nervous about the crowd (and their germs!) but we had great seats and managed without too much mingling. 

Eric had his bone marrow biopsy yesterday. I think he has had 9 (?) of them in the last 14 months so we are getting to be pretty good at the process. The worst part for Eric is fasting for the sedation. The worst part for me is waiting for the results. 

When we got home after Eric's biopsy yesterday, there was a big blue box waiting for him from the Make A Wish Foundation. It was a surprise "Wish Box" in advance of his Wish Trip to Disney World. It has an erasable count down board, t-shirts for the whole family, snacks and activities and a huge set of Disney characters. The countdown is on, only 9 days to go! 

The Last Few Days

We've been busy living life as normally as we can. Eric and Joel spent all day Saturday playing with their friends across the street - video games, rock band, biking and scooting. Unfortunately, the kids decided they would go halfway up the hill and come flying down and around the corner on their scooters and - surprise, surprise - Eric bailed HARD! I'm pretty sure the whole neighbourhood heard his screaming. Luckily he just banged up his knees pretty bad and is otherwise fine. I love that he can play like a regular 8 year old, but the panic caused by a simple fall is unbelievable - not just the normal, has he broken something, but has he banged/damaged his port, does he have enough platelets to stop the bleeding, etc, etc. 

Eric's energy level has improved a bit as well and he was able to make it through the whole school day on Monday and Tuesday and then also play on the playground after school. (Though he's a bit cranky at home in the evenings!)

Eric had his weekly check up at the Oncology Clinic yesterday and also had a check in with Respirology. Since we're reducing the immune suppressants that were being used to treat the GVHD in his lungs, in order to stimulate his immune system to kick out the bad cells, they want to make sure we're not losing ground on the GVHD. We don't have the results of those tests yet, so fingers crossed! Eric's check up at the Clinic was fairly uneventful; his hemoglobin and platelets have both fallen a bit more, but still not enough to require a transfusion and his neutrophils (germ fighting white blood cells) are holding steady, though low, so we are always watchful for fevers. 

Eric's bone marrow biopsy was originally scheduled for next Tuesday, Nov 28, but the dr has moved it to  Monday, Nov 27. He wants more of a buffer in case he decides Eric should have another round of treatment before our TRIP TO DISNEY WORLD!!! 

Eric was granted a Wish from the Make-A-Wish Foundation and he chose to go to Disney World, which actually includes staying at Give Kids the World, 3 days at Disney, 2 at Universal and 1 at Sea World. We've been looking forward to this trip for a couple of months, but with the change in his condition, I wasn't sure we would be able to go. As of right now, we can go, though things could always change before our departure date. We leave in exactly 14 days on December 7 and after sticking my head in the sand for a couple weeks, I am completely unprepared! Speaking of, does anyone local have a couple pieces of luggage we can borrow? We have one GIANT suitcase, one medium and 2 carryon, but I think medium is probably the best choice for this trip. THE COUNTDOWN IS ON!!!

Clinic

Yesterday was Eric's follow up at clinic (aka Oncology and Hematology Outpatient Clinic). Unfortunately, there was an accident on the highway yesterday morning and it took us FOREVER to get to the hospital. 

First activity at the hospital was a Visual Field Test at Ophthalmology which was a follow up from Eric's previous treatment and he did great! 

Next we headed to clinic where Eric had to have his port accessed for the first time. He was nervous about it so Kristina, the outpatient clinic's Child Life Specialist came in with all her fun distraction toys. Eric chose the VR and didn't even feel his nurse accessing the port. 

Next, our entire team (Doctor, Nurse Practitioner, Nurse Practitioner student and Nurse Clinician) came in for his exam and chat. Eric still had the VR on and had the entire room in stitches as he randomly reached and swiped the air right in front of and beside his doctor. The team concluded he was in good spirits and feeling just fine! 

His blood counts have again dropped a bit, but actually not enough to require a transfusion yet. With his hemoglobin at 85 (for reference, it needs to be over 125 to donate blood) he will likely be low energy. We've decided to keep him at school, instead of sitting at home with his iPad, but he will have the option to come home early if he needs to rest. 

Eric's bone marrow biopsy will be scheduled for Nov 27 or 28, in 2 weeks, which will give us an indication of whether or not the treatment he had last week is working. Additionally, we are continuing to wean his immune suppressants so his new immune system can fight the bad cells, but it is a balance because he was taking the immune suppressants to stop his new cells from fighting off his body (GVHD - Graft Versus Host Disease). Eric did have a chronic cough through the spring and summer from GVHD in his lungs. So we will also have a follow up at Respirology next week to ensure he isn't losing ground on that front. For now, we continue to wait. 

Santa!

Yesterday we went to see Santa at Santa on the Farm with photographer Jen Oke and Murphy's Tree Farm. What a beautiful set up! I had it booked last year as it seemed like a good, safe option for the immune compromised. Unfortunately, we had to cancel since Eric was in the hospital, so this was our first year attending. In addition to Sant, there was a campfire, goats, candy canes, hot chocolate, mature Christmas trees and baby Christmas trees! 

The kids had lunch, got dressed in the clothes I left out for them, we drove to Maple Ridge, hung around the farm 5 or so minutes when Joel bursts out "hey, how come we're (he and Eric) wearing the same shirt?!?!"

I've included some photos of our adventure (note these are not the professional photos!) as well as Eric playing with oobleck after he learned about it at a birthday party on the weekend and insists we make it. Not pictured, the oobleck all over the counter, table, floor, sink and my oven door! 

Eric is off to school this morning and has his follow-up at the outpatient clinic tomorrow morning. 

Thank you Baker Drive Elementary School Community!

An envelope from the Baker Drive Elementary School Community was dropped off at our house. That envelope was packed full of well wishes and support in various forms. We are truly grateful to belong to this wonderful and supportive community; the kindness and generosity is beyond words. 

I've included a couple of photos from the few days we've been at home, where Eric continues to thrive. 

Day 7/7

Eric had his last treatment today and we made it out of the hospital by noon. We're both exhausted, but so happy to be home. 

Next steps: If Eric continues to feel well, he can go back to school on Tuesday. He has an appointment at the Oncology outpatient clinic on Wednesday for a check in. His blood counts are starting to drop a bit so by next week he may need a blood and/or platelet transfusion. This occurs because of the bad cells as well as from the treatment this past week. (Again, please consider donating blood if you are able!) Other than the ongoing follow ups at clinic, we wait. In 3 or 4 weeks, Eric will have another bone marrow biopsy which will tell us if the treatment worked. 

In the meantime, everything is as it should be with the family home together; see pic of the boys with their iPads and ice cream and pic of Millie stealing my spot on the couch! 

Day 6/7

6th day of treatment today and they got it done quick so we could get out on our day pass today. We were the talk of the ward and most of the staff said they wanted to come with us! We met Eric's friends Annabelle and Kianna (and their lovely mothers) for waffles at Nero and then hit the Vancouver Aquarium. We saw absolutely everything at the aquarium, including watching both the seal and the seal lion feeding, and the 4D show - which required one of us to put the hood up on their jacket, made one of us motion sick and just surprised the rest of us at regular intervals. One of the kids, who shall remain nameless, may have exclaimed "this is way better than school!" (If the teachers are reading, the kids learned a lot at the aquarium!) 

Eric and I just chilled out for a bit upon our return to the hospital, before having a visit from Ian and his lovely Mom, who brought us mac and cheese! 

Clearly, Eric is doing well and we're looking forward to last day of treatment tomorrow and getting back home! 

Day 5/7

Today Eric received his 5th of 7 treatments. He continues do very well, so well in fact that we got ourselves a day pass today! We didn't venture out very far or for very long due to Vancouver's cold November rain, brrr! We went to see the new Paw Patrol Mighty Pups movie. Eric has been out of the Paw Patrol stage for years, but I guess it felt nostalgic, plus there are no good kid movies playing right now. It was definitely nice to have a break from the hospital, if even for a couple of hours. We're planning another day pass tomorrow and have much more exciting plans - stay tuned! 

Back at the hospital, Eric is hamming it up with some (more) LEGO and strawberries! 

PS. more good news: we get out of here on Wednesday, not Thursday as I had originally thought because apparently I can't count to 7! Only 2 more sleeps! 

Day 4/7

Eric is now half done his treatment and he's doing great. He has almost no pain left from the surgery and excitedly showed me how he could now sleep on his back, or either side and gargle too! 

Unfortunately, we are now on isolation due to a phlegmy cough. He had a lovely brain tickler nasal swab today and even though the swab came back negative on whatever they were testing for, we are required to isolate for 10 days, or until we go home - and I plan on going home first! Eric isn't allowed to leave the room and I'm not allowed to use any common areas - coffee, microwave, toaster, laundry. It is to protect all the immune-compromised kiddos on the floor, but it's still a pain in the rear. 

A huge THANK YOU to the Baker Drive Elementary community which has provided us with Starbucks and Safeway gift cards. Always useful, they become extra helpful when we're on isolation! We are truly grateful to belong to such an amazing, supportive community.  

I am back at the hospital now after a lovely little break with Joel and Millie, my own bed and my tub :) It sounds like Eric and Daddy had a great time. In fact, they were so busy playing video games and watching movies, that Eric only managed to finish one Lego set in 2 days! Of course, it was a 641 piece Lego Technic Batcycle that provided a bit more of a challenge than the last sets. 

I've included a pic of the completed Batcycle as well as a pic of "Sleepy Eric" (his description) and Lil'Pup who Auntie Jenny brought yesterday and finally a pic of the Starbucks gift card message that nailed it. 

(Note that despite all these references to sleep, it's almost 10pm and Eric is in fact not actually asleep yet!)

Day 2 & 3 of 7

Today, Saturday, is Day 3 of 7 days of treatment. Daddy (Chuck) came this morning and Mama (Jacqueline) got to go home to see Joel and Millie and sleep in my own bed!

Eric is holding up well to the treatment and starting to feel a little less sore from his surgery Thursday afternoon. He started on his fourth LEGO set today - and they're not small sets! - and his Auntie Jenny came for a visit. Yesterday he spent most of the day building LEGO (I read a book and fetched milk and food at regular intervals) and in the evening we had a visit from our friends Ian and Warren to trade Pokémon cards (that's my "bed" they are playing on). Eric was super tired last night after the visit and slept 11 hours straight without even waking up for vitals checks at midnight and 4am. 

Tomorrow is Day 4, the halfway mark, and most of the day will be spent with Daddy; Mama returning in the late afternoon. 

Successful Surgery

Just a quick update to say that Eric's surgery went well. Unfortunately, they were a bit behind schedule today so he had to wait until almost 2pm but he was an absolute champ missing breakfast, lunch and all of his usual 100 snacks. After the surgery he had some Halloween candy, chocolate milk and pain meds. He's doing great :) He's also already had his first of 7 treatments so we are well on our way! 

Inpatient Again

Eric was admitted to hospital yesterday afternoon after getting to participate in pajama and movie day at school - and he's been waiting since Labour Day to wear his Pikachu onesie to school so that was a big deal! 

Being back here feels like putting on an old shoe. It's been awhile, but it is all so familiar. We certainly don't want to be here, but since we have to be, we're so lucky to have such amazing people taking care of us. 

Eric had a big win yesterday; they did bloodwork to check his platelets because they have to be over 50 to have surgery, so if they were near or below 50, he'd have to have an infusion of platelets. Eric is allergic to platelets. They know now that they have to give him pre-meds and "wash" the platelets so that he doesn't have a reaction. However, after having had a couple of very unpleasant reactions in the past, he does not like getting platelets. So the win: the blood test came back showing his platelets are still over 100!!! 

Unfortunately no wins this morning; his surgery is scheduled for 12:45pm (and could get pushed by someone more emergent) and he has to fast. The poor kid is starving so we're trying to keep him busy and distracted this morning! He is currently building Lego with his favourite Child Life Specialist and I snuck down to Starbucks to get some breakfast. Shhhh don't tell Eric! But we really can't have us both hangry, can we?!?!

Thanks to some lovely friends for the Pokemon cards; he was super excited to tear into those!