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!