Bone Marrow Biopsy

Eric had his Bone Marrow Biopsy this morning. The worst part for him is the fasting. Usually the procedures start between 9:30 and 10am, but you never know how many people are on the list on any given day, or their ages, since they start with the youngest. Luckily, there were only 2 people on the list today and the other one was a teenager so Eric got to go first! The procedure went well and he woke up nicely. Upon waking he always wants a chocolate milk and then dug into the bag of snacks. 

His bloodwork today is showing his platelets are still low, and his hemoglobin, white blood cells and neutrophils are starting to fall as well. This is a sign of unhealthy marrow. There are blasts showing in the bloodwork as well, quite a low number, but any is not good. The results of the biopsy will come in over the week or so. 

I received a phone call from Eric's nurse clinician yesterday and she advised that his doctor wanted to start another cycle of 5Aza and Venetoclax immediately and he'd like Eric to be inpatient for it to keep an eye on his counts and how he responds. These are the 2 treatments Eric has been receiving off and on since January-ish. Eric will be admitted to hospital on Thursday for 7 days, 6 nights (and hopefully no more!) He is very pleased that he gets to go on his class skating field trip tomorrow morning before we have to go into hospital.

People always ask how they can help and that's such a hard question to answer. Generally just checking in on how we're doing is nice. Additionally, the hospital is a pretty expensive place to be as they only feed Eric, not the adult with him, and he doesn't like the food, so Door Dash and Starbucks gift cards are always welcome. Entertaining Eric for long days in the hospital is really important; he loves Lego and it keeps him entertained for hours at a time. Thank you to everyone who is thinking about and praying for him. 💕

Bad Blood (Eric's Version)

The title because Eric loves Taylor Swift. Does anyone have a hook up for tickets? We tried to get 2, but were unsuccessful :( 

Eric didn't have to go in for a check up this week, but his dr asked us to go to Lifelabs to keep an eye on his bloodwork since his platelets were so low last week. We went Thursday after school. On Friday late afternoon his doctor called and let us know that some blasts had shown up in his bloodwork. Additionally his platelets were down again and now his hemoglobin was down as well. All bad news. His doctor asked us to go into the hospital on Saturday (yesterday) for bloodwork. He said as long as Eric was feeling well we should be able to go home, but to pack a bag just in case. He also advised that Eric would need a bone marrow biopsy early next week. 

Eric and I went into the hospital yesterday. The clinic is closed on weekends so we went into the ward where he gets a comfy bed, I get a comfy recliner and we had a beautiful view of the colourful fall trees. And thank heaven, because we were there for more than 8 hours! Since we were going for noon, I had asked Eric if he wanted me to bring hotdogs to the hospital for lunch or if he wanted to stop at McDonald's on the way in. He chose McDonald's but I had a complete brain fart and forgot to stop on the way there!! So I had to order Door Dash to the hospital. 

We use emla to numb the port site for access. We generally put it on before we leave the house and its perfectly numb when we get to the hospital. Unfortunately yesterday our nurse was busy with another patient when we arrived and the numbing must have worn off because Eric screamed, and usually he's really good about the port access. To add insult to injury, she missed the port. This happens in the ER all the time because they aren't as experienced but almost never happens on the 8th (oncology) floor. Eric does seem to have a difficult port; its quite deep so more difficult for them to find and grasp. Of course the McDonald's arrived at the same time as our nurse so Eric had to wait until after the attempted access to eat his lunch and the fries were cold - this might have been the biggest injustice of yesterday. 

Anyhow, after the failed port access, we decided to put on more emla and wait an hour before trying again. New nurse and she got it first time, but now it was 2:30 before the bloodwork was drawn and sent to the lab. The dr came to check in at 3 and said she'd go to the lab to check on the bloodwork. She came back at 4pm to say that Eric's platelets were now 23. Since he wasn't bleeding, it was safe to send us home, so up to us whether or not we wanted to do a transfusion. I opted to do the transfusion because with the bad cells showing up, it isn't likely that the platelets would come up on their own, so he will need the transfusion sometime soon anyhow. Additionally, I was worried we'd go home and he'd get a nose bleed over the long weekend and we'd just have to come back. Unfortunately, Eric is allergic to platelets. So he is given pre meds to counteract an allergic reaction and also given specially treated psoralen platelets. However, the blood bank at the hospital didn't have any of the psoralen platelets on site, so they had to be ordered. Eric had a nice Benadryl induced nap while we waited for the platelets to arrive. He got the platelets, had his port de-accessed, we made a pb&j from the ward kitchen and hit the road making it home just before 9pm.

A pathologist (I think that was who it was) came in to look at the blast cells, but couldn't provide any definitive information. He will need the bone marrow biopsy to confirm. This is the same thing that happened when he was originally diagnosed, since his disease originates in the marrow. His bone marrow biopsy is scheduled for Wednesday. Until then, we just wait and try to enjoy our Thanksgiving weekend. 

 

Two Year Anniversary

Two years ago today, Eric was admitted to hospital for the first time. We had an indication from his GP based on his blood work that he had leukemia. However, it wasn't until he had a bone marrow biopsy the day after being admitted to hospital that we learned for sure it was cancer, and not until the Thanksgiving long weekend that we were given the official diagnosis of MDS (myelodysplastic syndrome), not leukemia. 

Looking back to two years ago is surreal - the things we didn't know then; the things we know now that we wish we didn't. And everything we, mostly Eric, have been through in the last two years: diagnosis of MDS, and then a secondary diagnosis of AML, so many rounds of chemo, hundreds of nights in hospital, loads of blood and platelet transfusions, allergic reactions, MRIs, ECGs, EEGs, CT scans, ultrasounds, plenty of blood draws, bone marrow biopsies, surgeries, a bone marrow transplant, PRES, chronic GVHD, so many medications, relapse and, most recently, a newer drug meant for adults with a different condition to buy us some time that has miraculously caused Eric's donor cells to rebound to 100% and eliminate the abnormal cells. It has been a truly awful journey that I wouldn't wish on anyone, ever, but today, we are so thankful that Eric is strong and stable, and grateful for the community that has rallied around us. 

On Wednesday, our nurse clinician called to let me know the results of the chimerism tests were back and show full donor cells and none of the mutation that marks Eric's disease!!! They also advised that his lung function is stable compared to his last test, but we need to continue to keep a close eye on it. His function is around 90% and pre-transplant he was about 107%

Eric had a check up in clinic today. His platelets were under 100 when he had his last check up 2+ weeks ago. Decreased platelets is a known side effect of his current treatment. Platelets help blood to clot so low platelets mean lots of bruises (bleeding under the skin) and could mean uncontrolled bleeding externally. Eric is covered in big, dark bruises (and is still taking his medication) so we knew his platelets hadn't increased since last visit. In fact, today his platelets were 39. Yours and mine are likely in the 300s. Without active bleeding, they will let platelets drift quite far (10 if you are inpatient) before giving a transfusion. So today Eric's doctor chose not to give him a platelet transfusion; however, he did stop his current treatment 4 days early (24 days of 28 day cycle completed) because he doesn't want Eric's platelets dropping into the teens. Eric will have a blood test in the community (life labs, no drive to children's!) at the end of next week to see how his counts are trending and then a check up in clinic the following week. Depending on his count recovery, at that time we will decide on timing to start the next round of treatment. Eric's hemoglobin is good and his neutrophils (germ fighting white cells) are down a little from last visit, but *okay* at 1.0. The doctor did say they've been seeing colds and covid and now starting to see flu as well. 

In other news, its Millie's 3rd birthday today! 

The Rocky Mountaineer

We were so lucky to be chosen by Starlight Children's Foundation to be one of the 15 families to go on this once of a lifetime trip on the Rocky Mountaineer. 

On Tuesday we flew from Vancouver to Calgary courtesy of the Air Canada Foundation.

This was a nice easy day. We checked into the hotel and the kids played in the pool. The next day, Wednesday morning, the adventure started! We met all the other families and the amazing Starlight staff, including Captain Starlight and L'il John, for breakfast and the kids got to make their own stuffed animals.

After breakfast, we got on a bus headed for Banff. In Banff, the kids were each given $50 gift cards to Ardene who are a sponsor and fundraiser for Starlight. The kids chose fidgets and gel markers. Next the kids were each given a $50 gift card to the Banff Sweet Shoppe which was pure chaos and so much fun for all the kids. The kids managed to spend $94 on candy, leaving $6 for a single piece of fudge for Chuck and I to share.

Next we got back on the busses and headed to the Banff Gondola which took us up the top of Sulphur Mountain where we walked across the Boardwalk and enjoyed some amazing views. The top of the mountain is just under 8000 feet of elevation and Eric did struggle a bit with the thinner air. 

We headed back to the hotel for dinner and we were so exhausted after the busy day, we just chilled in the room for a bit before an early bedtime. Early because we had to meet in the lobby at 6:45am MOUNTAIN TIME to catch the bus to the Rocky Mountaineer train. There was surprise rain in Banff that morning, but we got a phenomenal rainbow later in the morning that is one of my favourite images of the trip. 

The first day we took the train from Banff to Kamloops and were on the train about 16 hours before catching a bus to our hotel for the night. It was a very short night before we had to wake up and get back on the bus to head back to the train for the second and final leg of the trip from Banff to Vancouver. On Day 2 we were on the train about 10 hours. It is difficult to describe how amazing these 2 days on the train were. Obviously, the views were incredible and the pictures really don't do them justice. We saw a deer and a lot of eagles. Some people also saw an elk, but we missed it. We saw lakes, rivers, mountains, trees, desert, cliffs in different colours from oxidizing minerals, bridges and canyons. The seats on the train were super comfy; they had heated seats, lumbar support, recline and foot rest. The food was incredible, all made to order: eggs benny, steak, steelhead, handmade gnocchi and the most amazing grilled cheese and mac and cheese for the kids. The hosts on the Rocky Mountaineer were phenomenal. They were kind and accommodating, funny, energetic, and amazing story tellers. And of course there was all kinds of swag - Polariod cameras! - and activities from Starlight; the kids used their Polariod cameras to create scrapbooks, they played a get to know the other kids on the train bingo game, and Disney trivia, with prizes for everything of course. The most amazing part of the trip, though, was the other 14 families on the train. These are all families with critically ill children getting to be "normal" among other families that understand the day to day challenges of life with a critically ill child. Everyone, including the Rocky Mountaineer hosts, was crying as the train came into the station in Vancouver. Eric is such a social kid, so "go with the flow" and so incredibly strong and resilient, but he still needs this connection with kids who have experienced the same kinds of challenges he has. It isn't that the kids actually talk about their challenges, but Eric said how nice it was to have kids that he could relate to and could relate to him. 

Getting off the train, Eric perfectly captured the magic of the trip saying "so, what, we are just supposed to go on our with lives now?"

We absolutely loved every minute of the trip, but we were also exhausted when we got home. It's been wonderful having the long weekend to recover, especially since I came home with a cold, but luckily no one else has caught it. Most of us have been in ours pjs all weekend; though Eric had a busy Sunday with swimming, skating and a birthday party.  

September

I can't believe it's mid-September already and we're back into the routine of school lunches and waking up early. 

Eric had a check up at clinic yesterday. His platelet count has dropped a little but is not unexpected with his current treatment. Everything else, most importantly, those germ fighting white cells, are still looking decent. He's 9 days into a 28 day cycle of chemo and handling it well so far🤞After having his port flush, bloodwork and check up with his Oncologist at clinic, we headed to the Respirology clinic where he completed 2 breathing tests. In between tests, one of the clowns came to hang out in the waiting room. 

That plate on Eric's finger is actually spinning!

We are still awaiting those results, but the tests were fast, so I expect he's done okay because they didn't have to ask him to repeat the tests multiple times. We are also waiting for chimerism results; the blood was drawn for that yesterday and it will take approximately 2 weeks for full results as it is a lab in Seattle that does the analysis. The chimerism test is to check if Eric's blood (and therefore bone marrow) is made of healthy donor DNA, which is what we are hoping for. In the meantime, we got the all clear to go on our train trip, and don't have to be back at the clinic for almost 2.5 weeks. 

Even though Eric is still undergoing treatment, he is quite stable. As a result, we were able to enroll him in swimming lessons (at a private pool) and skating lessons which he hasn't been able to do for a couple of years and he is super happy! 

Did I mention a train trip? Thanks to Starlight Children's Foundation, our family gets to go on the Rocky Mountaineer next week. We fly from here to Calgary and then the next morning, we take a bus to Banff with 14 other Starlight families. In Banff they have some surprises and activities for the families. The next morning (way too early) we get on the train through the Rockies to Kamloops. In Kamloops we stay overnight at a hotel and the next day get back on the train to finish the trip back to Vancouver. It is 15 Starlight families in one train car with dining on the bottom and glass dome seating above; we even have our own outdoor viewing platform. It's going to be so fun (and exhausting!)

My PSA for the month: September is childhood cancer awareness month! It is actually shocking how little funding and research goes toward pediatric cancers. Follow me on Instagram or Facebook to learn more this month. 

If you want to support pediatric cancer research directly, please check out the Michael Cuccione Foundation Michael Cuccione Foundation

If you would like to support pediatric cancer families, please check out West Coast Kids Cancer Foundation WCK or Balding for Dollars Balding for Dollars

As always, donating blood is free and very necessary to support those in treatment Canadian Blood Services

Back to School!

First, Eric had a check up at clinic today. The nice, light summer traffic is over :( But luckily the blood lab wasn't very busy so that was a win. Eric finished his 28 day cycle of oral chemo yesterday and his blood counts are still looking good. Since it didn't hit him as hard, and his blood counts remained relatively stable, he just gets a one week break and starts the next round on September 10. We are back in the clinic on the 18th at which time he has an appointment with Respirology to check his lung function. It seems stable to me, but certainly isn't 100%; they want to make sure it isn't deteriorating. At that appointment they'll do an extra blood draw to check his chimerism (DNA) from peripheral blood to ensure the treatment is still working. Everything seems fine and no reason to worry, but this kind of thing always causes a little heightened anxiety. I've learned this is called (by the other oncology families at least) "scanxiety."

In other news, we finished off the summer strong with a bunch of activities. First we stayed overnight at the River Rock to play in the pool and on the slide. We drove from there to Big Splash in Tsawwassen because when asked what else they wanted to do this summer, both boys answered "WATER SLIDES!" 

The next day, we drove out to Harrison and went on the inflatable water park there. I've seen it before, but didn't really know what to expect. It was a BLAST! Chuck and I were a little worse for wear after (sore and bruised) but we still had a good time and the kids absolutely loved it. As we were leaving, Eric asked when we could go back. 

Next Uncle Jon and Auntie Becky came to visit for the long weekend and we went to the PNE; Eric went on a few rides, we sampled all the food, watched the Super Dogs and met (Super) Mario. 

Finally, it was time to go back to school! We had such a fun summer and I'm not sure any of us were ready for it to end, but we're all also looking forward to being back to routine and the kids to seeing their friends at school. Joel's in the same class as last year, this time as a Grade 7, but with a new teacher because his amazing teacher left the school last year. Eric doesn't know his teacher/class yet; hopefully we will find out Friday, but for now he's happy to be back with his friends from last year and to be starting Grade 4. 

Now that the kids are back at school, it is time for a break for Mama. I am taking a quick 5 day trip to California all by myself for a little R&R. 

Ugh, Covid

I mentioned at the end of my last post that Joel had tested positive for Covid. We isolated him in the basement, but it didn't take long for the rest of us to get it too. Joel wasn't very sick; he just had a stuffy nose for a day or two and otherwise felt fine. I was still nervous about Eric catching it because the rest of us are all up to date on our vaccines. Eric was before his transplant, but the transplant basically erases all of those previous vaccines and then he wasn't able to be vaccinated since. However, he also sailed through it, thank heaven! He had a sore throat for about a half day and it wasn't even a very bad sore throat because he didn't complain much. I think he was probably tired for a couple days too. He wouldn't nap of course, but was pretty cranky at bedtime for a couple nights. 

As a result of the Covid, we weren't able to spend a week at the lake with our friends' or visit other friends' at their campground or make it to Theatre Under the Stars, all of which we had planned. However, it was nice to slow down for a bit and we did make it to the Sunshine Coast to visit Granny once we were feeling better. Luckily we were able to reschedule almost all our other plans for later this month, so the last week and a half before back to school is going to be BUSY! 

Yesterday, Eric had a check up at the hospital and his counts are still climbing, thank heaven, even having started the next round of oral chemo and fighting covid. He looks like he'll be in a good place heading back into the classroom, though he does still have 2 weeks left in this round of treatment, so we'll see how that goes🤞

Playing at low tide in Halfmoon Bay

Turning over rocks and playing with the crabs

Eric's first Shiner off the dock at Halfmoon. He named it Little Tom.