Bone Marrow Biopsy Wednesday, July 2

On Wednesday, Eric had his 19th bone marrow biopsy. NINETEEN. They have done 18 of them on his right hip and only one on his left hip. Last time they had a bit of difficulty with his right hip and so they put numbing cream on both his right and left hips this time, just in case, but they didn't have any trouble with his right hip this time. 

Eric also had a platelet transfusion on Wednesday. Interestingly, the hospital didn't have the platelets on site when we arrived, so he couldn't have the transfusion prior to his biopsy. It has been many months since we've had to wait for platelets to arrive on site. This was definitely the day for it to happen though, since we were hanging around anyhow, recovering from the sedation. When the platelets finished, Eric felt ready to go. Since it was such an early appointment, we still arrived home at a reasonable time. Not that it mattered to me because I completely crashed. When I woke up I didn't know who or where or when I was. 

That was it for clinic this week. Now we wait for results. 

Over the long weekend, we headed to Harrison for a couple days. The true destination was the Harrison Watersports floating waterpark. We did this last summer in August and the kids had a blast and Eric kept asking to go back. So I booked it and decided we may as well make a trip of it and stay at the Harrison Hot Springs Hotel as well. The kids have never been and Chuck and I haven't been since before Joel was born. Chuck kept freaking the kids out by saying "when I came here when I was your age..." Unfortunately, the hotel also appears like it has been around since Chuck was a kid. I knew it was old, but was really surprised by the lack of updating they've done. We did have a good time in the pools though and the kids enjoyed the buffet breakfast; Eric had a made to order omelet, while Joel enjoyed Froot Loops and croissants! We definitely picked the best day to be out on the water because it was super hot. However, no amount of wetsuit helps the temperature of Harrison Lake in June! The wetsuit in the lake last August was definitely tolerable. In June, it was still shockingly cold. Of course, it didn't slow the kids down much.

That evening we headed out for dinner along the lakefront, but everywhere was so hot. We ended up choosing the German restaurant, Black Forest, simply because it had air conditioning. Luckily we also got good beer and good food, in addition to the air conditioning. After dinner, we got some ice cream; it was so hot that Joel gave up trying to stop it melting all the way down his arm and just let it happen. 

In the morning, on Canada Day, we checked out of the hotel and headed to a lakefront diner, where we are able to catch the very entertaining Canada Day Pet Parade! 

Back home, the adventures continue. Yesterday, Thursday, we headed to Grouse Mountain with Starlight Children's Foundation and Power To Be. It was an all day adventure with a picnic lunch, Lumberjack Games, Ranger Talk and Birds in Motion demonstrations. We got to see the Grizzly Bears, Grinder and Coola, and some pretty cool birds. We also got to ride on the new gondola. Unfortunately, while it was a perfectly reasonable temperature in the city, it was freezing on the mountain because we spent most of the day IN a cloud. It did start to clear up shortly before we headed down the mountain. 

The kids are at Camp Goodtimes next week. They leave Sunday afternoon so Eric is headed in for a platelet transfusion Sunday morning before camp. The clinic isn't open on the weekends, so we were lucky that the inpatient ward was able to accommodate him for a quick outpatient visit. 

Camp Goodtimes is a medically supervised camp for kids with cancer and their siblings and families. Joel and Eric are both going to Kids Camp next week and, closer to the end of the summer, we're all going to Family Camp. Camp Goodtimes is funded by Cops for Cancer. They are fundraising now with lots of community events and do their big ride in the fall. Check out Cops for Cancer for information about your local ride. Ours is Tour de Coast: Cops for Cancer Tour de Coast

Weekly Check Ups Monday, June 23 and Friday, June 27

 WOOHOO! Summer vacation!!! How on earth can Joel be this tall? 

We've had such a busy June and the past 1.5 weeks was no exception. Lily came to visit us; she brought Grandma with her. 

Last Thursday, Eric was invited to be the Canucks for Kids Fund Star of the Game at the Abbotsford Canucks. It was so special and was also a great hockey game. 

Friday was the Block Party at Eric's school. The weather wasn't ideal, but the rain held off. The kids enjoyed running around and playing with their friends. 

Saturday, Eric had a dentist appointment. Unfortunately, he sees the dentist at Children's Hospital, but at least traffic isn't bad on Saturday. However, they were so far behind that we ended up waiting 40 minutes for a 20 minute appointment. Eric can't have cleaning and scaling because he can't have anything that might make him bleed. Everything looked great on the x-rays and the exam and Eric's 2 loose teeth look super close to falling out. 

Sunday we went to Granny's to celebrate Daddy's and Uncle Dave's birthdays with the family. From there we raced home to get Eric to swimming lessons on time. He was tired, but still enjoyed himself. 

Monday was back to the hospital for a check up. Hemoglobin was hanging in there, but no surprise that platelets were low, down to 6. Eric had a platelet transfusion and we discussed the plan for Camp Goodtimes Kid's Camp at the beginning of July. We had planned to go into the ward on Sunday morning for a platelet transfusion before heading to camp in the afternoon. Unfortunately, they've also asked us to come in (from camp) on the Wednesday for an additional platelet transfusion to ensure he's safe at camp through all the activities. 

Eric went to school Tuesday and Wednesday and then Thursday was a half day and the last day of school. On Thursday the kids and I went to Chapters and Marble Slab for books and ice cream as we always do on the last day of school. Finally, we went for dinner with a bunch of friends to celebrate the last day of school. 

Friday morning Eric and I headed back to the clinic. It was a lousy way to spend the first day of summer vacation. Traffic was great and we arrived early. However, despite the platelets having been pre-ordered, we were there for almost 2 hours before they were even started. Shortly after they were started, Eric's Nurse Practitioner let us know that his hemoglobin was down. It was borderline for a transfusion, but with the long weekend, and planning for a few days away, I thought we better get the blood transfusion, rather than end up in the ER over the weekend from a migraine. It made for a very long day. At one point in the afternoon, Eric turned to me and said "Can we go soon?" as if I was chatting for too long and he was waiting for me, as opposed to being connected to a bag of blood that kept him tied to the hospital. 

I also brought my (old school) fridge calendar to the hospital to discuss dates and plans for the summer. I'm able to nail down a few little things, but for the most part it is all very up in the air. Eric finishes this round of oral treatment tomorrow (Sunday) and has a bone marrow biopsy scheduled for Wednesday. In the meantime, we're headed to Harrison for a couple days to enjoy the hot springs and the inflatable water park on the lake. 

Weekly Check Up Wednesday, June 18

Feels like a long time since we only had to go to clinic once in a week, but here we are! Clinic today was quite uneventful: access, bloodwork, platelet transfusion, exam and de-access, which took about 3 hours. Eric is more than halfway through his oral treatment; today is day 17 of 28. His counts are taking a bit of a beating, as expected about a week after the IV chemo, with his white blood cells down and his platelets only 6. However, he has been feeling quite well this round. I continue to be pleasantly surprised as Eric continues to go to school. I can't believe there is only a week left, and I'm glad he's able to go see his friends before the summer break starts. Unfortunately, his legs are more black and blue than anything else, with some big ugly bruises. I assume this is the price we pay for increased school and decreased iPad. 

This past Sunday, for Father's Day, we went on the Pirate Adventure at Granville Island, thanks to Starlight Children's Foundation. It was fun and Sunday turned out to be a great day to be on the water. The boat goes rain or shine, so I was a little nervous, but we got lucky. I think Eric's favourite part were the water "canons." 

On Thursday, tomorrow, Eric was invited to be the Star of the Game at the Abbotsford Canucks game. They're in the finals for the Calder Cup so it should be some good hockey. 

A short update this week and we're happy to be boring and have a little rest and relaxation after our busy few weeks. Now if only Eric's platelets could also be a little more boring, less dramatic, stick around a bit perhaps... Back to clinic Monday and Friday next week. 

Weekly Check Ups Tuesday, June 10 and Friday, June 13

Eric and I had a great visit to Prince George to see Grandma, Uncle Jon, Auntie Becky and most importantly, Lily! 

Chuck and Joel had a boys weekend at home. Eric and I got back to town Monday afternoon, just in time to celebrate Chuck's birthday on Monday evening. 

On Tuesday morning, Eric got a ride to school in a police car courtesy of Cops for Cancer. Cops for Cancer raises money for pediatric cancer research and to fund Camp Goodtimes, a medically supervised camp for kids with cancer, their siblings and families. Their big fundraiser is Tour de Coast (or Tour de Valley, Tour de Rock, Tour de North, depending on where you live) which will take place in September. Currently the participants are training and fundraising and they enjoy meeting some of the kids and families that they are supporting with their efforts. I think Constable Neil enjoyed it almost as much as Eric! 

With Eric's busy social calendar, it was difficult to fit clinic in this week, but luckily they are always so accommodating. Eric ended up going to school just until recess on Tuesday after arriving in the police car. I picked him up and took him to clinic where he had his port accessed, bloodwork and a platelet transfusion. Annoyingly, his nose did bleed on and off throughout the weekend in PG, but his platelets weren't TOO low, for him. 

Eric had to load up on platelets on Tuesday because his class had a field trip to the new Mundy Park outdoor pool on Wednesday. 

The class walked to the pool, but Eric caught a ride with Kim, who also took the picture - thanks Kim! He played and played at the pool and then walked back to the school (since it was downhill, he said.) I drove up to the school on Wednesday to pick Eric up thinking he'd be tired from the field trip. I parked on the street and went to the front of the school to get him. Walking back to the car with Eric, he stopped and pulled the door handle of a white car. I said oh sweetie, that's not our car and we kept walking. A few steps later I stopped and said OMG that was our car! 🤦 So just in case you are wondering how my executive functioning is, the answer is poor! I told Eric I lost my marbles. He said he couldn't lose his because they were in a jar in his closet. However, when I asked to borrow them, he refused! 

Eric did also go to school on Thursday and even had a couple of friends over afterschool. Having just started a new round of treatment last week, I really didn't expect Eric to be feeling up to all these activities this week, but looking forward to the ride in the police car and swimming helped him rally I guess. 

Eric's nose didn't bleed again after the transfusion Tuesday, until Friday morning. Luckily he did have an appointment at the clinic scheduled for Friday. Upon arrival at the hospital, his Nurse Practitioner asked if he wanted an IV dose of Tranexamic Acid for the bleeding, but I declined since his nose had stopped bleeding. While he was getting accessed, it started again; unfortunately, since he was lying on his back, it also caused him to gag. We were so lucky to have 2 nurses in the room who managed to simultaneously slap the dressing on to protect his port access and get him sitting up (while his mother also gagged and was otherwise quite useless.) This is approximately when I learned that it was Friday the 13th, and it felt like it at the clinic. It seemed a bit chaotic, both in our room, and in the clinic in general. The platelets had been preordered, but with the continued bleeding, the team wanted to get the Tranexamic Acid in first. As it ended and just before the platelets started, Eric's bloodwork came back and his hemoglobin had dropped to 77 so he would need blood as well. Luckily, our nurse drew the blood for the group and screen (to confirm blood type) right then, so when the platelets finished, the blood was ready to go. This was lovely since last time Eric needed blood we had a one hour delay between the platelets ending and the blood starting. It was a long day, but after the nose bleed, everything went smoothly and as quickly as it could. Eric also had time to finish the project he'd been working on for Kristina's playroom, but I don't have a photo because when he finished, he just wanted it out of his room! It wasn't super well designed and a few parts were top heavy so they kept falling over. 

I can't believe there is only 1.5 weeks left of school. I've spent some time talking to the team about summer and looking over our summer calendar and it's proving to be a little challenging. We had such a great summer of adventures last year and I'd love to be able to create amazing memories again this year. However, I have to remember we are not in the same place we were in last year. Eric's energy level, fatigue and nausea is up and down, and, critically, he really does need platelet transfusions every 5 days. It's making it difficult to plan for even a week away. So I will keep noodling on that, and in the meantime, Eric's next clinic visit is scheduled for Wednesday next week. 

Monday, June 2 through Friday, June 6

Eric started a new round of treatment Monday so we were at clinic everyday this week, but first, we took a long weekend camping(-ish) and had a great time! 

We were offered 2 nights camping in a cabin at Revelstoke RV & Cabin Resort by Starlight Children's Foundation. We decided to take a couple extra days and stay over in Kamloops on the way there and the way back. We left Thursday afternoon and headed to the Coast Hotel in Kamloops, which I booked for its indoor pool in an atrium sort of thing and hoped to have a room overlooking the pool. Unfortunately, since we brought the dog, we didn't get one of those rooms, but the pool was still pretty great and came with a giant inflated soccer ball that the kids enjoyed playing with. 

They did get immediately into the pool, even though we didn't arrive until after 8pm. Back to the pool again in the morning and then hit the road to Revelstoke. We arrived in the afternoon and settle into our "rustic" cabin and explored the site. We enjoyed the campfires, so many marshmallows, the tetherball and basketball at the playground, the outdoor movie theatre and the goats. All of that and the kids' favourite part was the camp store where we were gifted a credit that they plowed through buying ice cream, candy, gum, pop and more ice cream. While we were there, we visited the Revelstoke Dam. I didn't even know it was there and its HUGE - bigger than the Statue of Liberty and the Great Pyramid of Giza. There were a lot of dam(n) jokes all day long. 

On Sunday, after a pancake breakfast hosted by the Revelstoke RV & Cabin Resort, we headed back on the road toward Kamloops, but stopped to see the Martha Creek Falls, which is apparently a bit of a hidden gem. They can't be seen from the road, but are just off it and spectacular. 

From there we headed to the 3 Valley Gap Ghost Town. The reviews are decent, but if you've been to Barkerville, it's probably not worth the visit. Though they do have an antique car museum which was pretty cool and a rail car museum that Chuck really enjoyed, but Eric and I found claustrophobic. Finally we made it back to Kamloops, this time staying at the Best Western Premier Aberdeen for the waterslide. Of course, the kids headed straight for the pool. They enjoyed the waterslide, but it freaked me out. It was completely black inside which I hate. We had the whole pool, waterslide and hot tub to ourselves! 

Last week Eric's doctor threw us a bit of a curve ball (but I knew it was coming) wanting to start another round of treatment. We decided that we would still stay Sunday night in Kamloops, but come back early enough on Monday to make it to clinic in the afternoon. In the meantime, our Nurse Clinician checked with clinic and the Oncology pharmacy to find out what the latest was that we could come in. We agreed on a 3pm appointment. I wanted to leave Kamloops by 10:30am to give us a bit of a buffer, but we managed to leave a few minutes earlier than that and, with an uneventful drive, got to our house in exactly 3 hours. This gave Eric and I a few extra minutes before we had to leave for clinic. I laid down for 20 minutes and then packed a snack bag and we headed out. 

Monday, June 2, Day 1/5:

Nice and easy afternoon drive to the hospital. Clinic wasn't busy so it didn't take long to do Eric's access and bloodwork, followed by IV Ondansetron (anti-nauseant) and then the IV chemo only runs for 10 minutes. His Nurse Practitioner came by to let us know the results of his bloodwork, which were all good (for Eric) and do a quick exam. We were out in only about 1.5 hours and into rush hour traffic home. Of course, we knew this was the trade off for staying the night in Kamloops, so we managed it; some of us might have fallen asleep a little (not me!) On Monday, Eric also started Day 1/28 of the oral treatment. 

Tuesday, June 3, Day 2/5:

We had a busy day planned for Tuesday; back to clinic for another dose of IV chemo, plus platelets, plus an appointment at the Endocrinology Clinic. Upon arrival, Eric's Nurse Practitioner suggested that maybe Eric didn't need platelets since his count yesterday was 19. Not high by any stretch, but without active bleeding, okay for Eric. However, I wanted Eric to have the transfusion because I wanted him to get back to the regular Monday/Friday/Wednesday schedule and if he didn't get them Tuesday, he would end up getting them Wednesday and then we'd have to be back for Monday/Friday next week after being in for 5 days this week... anyhow, there was logic behind it. Also, because we had planned the clinic appointment around the Endo appointment so, if we didn't get them, we'd just be sitting around for 2 hours waiting for the Endocrine appointment, and then sitting around the following day while he got platelets. We definitely can't accuse me of underthinking any of this! So his NP agreed it made sense and ordered the platelets. His nurse was amazing to get in the platelets, Ondans and chemo in the remaining 2 hours before the Endo appointment. 

Endo was pretty uneventful. They like to follow Eric because he has adrenal insufficiency from the high dose steroids almost 2 years ago and because he takes a medication to compensate for that. They'd ideally like to wean him off it, but because of the continued treatment stressing his body, it is too hard to do right now. So basically, they weighed and measured him, asked me a bunch of questions and then we were able to leave. Back to rush hour traffic once again

Wednesday, June 4, Day 3/5:

It was a busy 6 days leading up to Wednesday, but I was excited for Wednesday. It should be a quick clinic trip and I can actually get caught up on life. Eric was super duper tired Tuesday night. It has been go, go, go, but also a side effect of both the IV and oral treatment is fatigue. On Wednesday morning I was completely blown away when Eric wasn't awake by 9am; he is the early riser in the house! I ended up having to wake him up about 9:15 so that we could leave the house at 10am. Clinic did go fairly quickly, as we had anticipated, and we were out in less than 2 hours. At home in the afternoon, Eric built a LEGO set that Kristina had gifted him the day before, while he continues to work on her project for the playroom. It was the Knight Bus from Harry Potter and very cool, but apparently also way too much purple! 

Thursday, June 5, Day 4/5:

Another quick and uneventful day at the hospital. Eric woke up at a reasonable time and I was able to squeeze in a dog walk before we left and some chores when we got home. 

Friday, June 6, Day 5/5: 

Today is an exciting day for 2 reasons! One, Eric gets his port de-accessed and can scratch under the dressing, and two, Eric and I are flying to Prince George to meet Lily! Lily is Grandma's new Bichon Frise puppy. She is 10 weeks old and only weighs 3 lbs. Eric chose her name and is actually even more excited to meet her than to get de-accessed. We are at clinic right now. Turns out this is a good place to update my blog, since I finished another book yesterday and it's a hard place to start a new one with all the interruptions. The IV Chemo is finished, we've seen the doctor and the platelets are almost done. We're actually going to be finished here even earlier than I anticipated, but our flight isn't until 6pm. Luckily Granny lives nearby! 

We're back to clinic on Tuesday next week, since Eric's class has a swimming field trip he really wants to go on. However, we're going to come in a little later on Tuesday because Eric is getting a ride to school in a police car courtesy of Cops for Cancer! Looks like another busy week ahead!

Weekly Check Up Monday, May 26 and Thursday, May 29 + Biopsy Results

What a busy week! Since we are taking an extra long weekend, we had to move Eric's Friday clinic visit to Thursday. So we were in Monday and Thursday, plus had to pack, and Eric actually went to school on Tuesday and Wednesday! He had a great time, but holy was he tired! 

Monday our clinic visit wasn't until 10am, so we left at 9am and thought traffic would be good, but nope! The visit was overall quite uneventful, since platelet transfusions have been the norm for some time now. However, we did try something new and a little scary. Eric is allergic to platelets, so he usually has an oral dose of Cetirizine (Reactine) and a whopping IV dose of hydrocortisone before he gets platelet transfusions. They also used to give him special platelets that were referred to as "washed" but changed to a different method called psoralen treated. At first those had to be specially requested, but now it is standard. So one of the doctors suggested that we try giving Eric Reactine at home before we leave the house and skip the pre-meds at the hospital. The idea was that with the Reactine on board for longer and with the special psoralen treated platelets, he was unlikely to have a reaction and we could shorten our visits. It worked! (Of course, our visit wasn't any shorter.) 

On Monday, Eric's oncologist had partial results from the biopsy. Apparently the long weekend really threw a wrench in things. The report indicates leukemia blasts are <5% That's the reported amount but practically are in the 1-2% range, which is the same as before. It also indicates that the dysplastic (bad) cells are 69% I'm not sure there's any world in which having 70% broken cells is a good thing, except maybe when that is down 20% from the last biopsy. His doctor said we can be cautiously optimistic that this is improvement, but he'd like to see this decrease paired with an increase in donor DNA, but he was still waiting on those results. 

As I said, Eric went to school on Tuesday and Wednesday. Wednesday it was almost 30 degrees and after school Eric went to a friend's house after school to play on the slip n'slide. As I was putting sunscreen on his bruised legs I thought (out loud) hmm maybe this isn't such a good idea, but Eric said "too bad, you already said yes!" So that was that. He had so much fun and when I said did you get any new bruises he said "yep" and then continued on whatever he was doing before I asked. But really, who could tell if he had new bruises; he is one big bruise! 

Thursday back to clinic, and what a trip it was. We ran into construction, ambulances and police; it was just one thing after another. As we were exiting the highway, I called our Nurse Clinician to let her know we were running quite late, more than 20 minutes. I figured by the time we parked and got into the clinic, we'd be a half hour late. She said she'd let the clinic know and also get the Nurse Practitioner to pre-order the platelets. This turned out to be the best thing ever. Between the platelets being ordered and no pre-meds (we gave Reactine at home again) the platelets were started right after his blood was drawn. It was going to be the fastest clinic visit we've had in 6 months! Was going to be... Eric's team walked into the room and I said this is amazing, we're going to be late more often, and they said, his hemoglobin is 75 and we've ordered blood. Sigh. 

They did now have the rest of the biopsy results and they're "interesting." Eric's donor DNA is 12% The doctor was looking for that to come up to about 30% in order to match the drop in dysplastic cells. Obviously, that didn't happen. The doctor drew me a picture to explain what he thinks might be happening. It's a bit complex, and somewhat rare, but essentially he thinks that missing 20% (69%+12% = 81%) might be Eric's own cells, but healthy. It's hard to say if that is good or bad. It would certainly be better if it was donor cells, but it is positive that it is not dysplastic cells. The concern with both donor cells and Eric's cells is that they may not live in harmony, causing GVHD (graft versus host disease). Oh and there is no way to test to see if those are in fact healthy Eric cells. Basically we just wait and see what happens next. 

In the meantime, Eric will start another round of the same treatment on Monday. We will drive into the clinic 5 days in a row for the IV treatment and at the same time he will start the 28 day oral treatment. 

It's Thursday at about 2:30 pm and the blood is just finishing up. This is how Eric walks around the hospital; notice the ipad perfectly balanced on the IV pole. 

I usually bring a book to read but I finished my book yesterday and thought maybe I'd write this up today instead of starting a new book, since we are away for the weekend and I wasn't planning on bringing my laptop. Getting blood today was an unexpected delay, but it also means Eric will be feeling his best for our trip. We've spent the day asking everyone who comes in our room what their favourite road trip song is and adding it to our playlist. We are looking forward to some fun family time and s'mores! We have 2 nights in a hotel and 2 nights in a rustic cabin. Wish us luck for the drive home and the drive out of town! 

Weekly Check Up Wednesday, May 21

We've had a fairly uneventful week, which is never a bad thing when you're dealing with a medical condition. We had a nice relaxing long weekend. Eric had a make up swimming lesson to use so we decided to schedule it for the long weekend when Eric was feeling good. He got to go swimming on Sunday and Monday. Monday was the start of survival week so Eric swam lengths with pjs over top of his bathing suit, took the pjs off in the deep end and then learned about rescue. Joel went to a movie with friends; they were dropped off and on their own, which is a first for him. 

Tuesday Eric actually went to school and had a blast. Since half the grade 4/5s were at Track Attack, the two classes joined together and had lots of outside, gym, and computer time. 

Wednesday we headed to clinic for 9am. Access, bloodwork, pre-meds, platelet transfusion, de-access and home. As quick and straight forward as that sounds, it was 3 and 3/4 hours. Eric built more of the space coaster set for the play room. It is a huge set, but he's getting closer to finished. Unfortunately, no biopsy results because of the long weekend. Eric's bloodwork on Wednesday was not great though, which has me pretty worried about the results. 

Thursday Eric went to school again and received a recognition at the monthly Recognition Assembly. He was recognized for his positive attitude. Nothing has ever been so fitting; this kid is unbelievably positive in the worst of circumstances. 

Friday both kids woke up with a headache and stayed home from school. So frustrating for me as I ran all the errands on Thursday and was looking forward to my free Friday. Also concerning because Eric gets headaches with low hemoglobin. His last transfusion was less than 2 weeks ago and he's been getting about one a month, but with the bad bloodwork on Wednesday and waiting for biopsy results still, I start to think the worst. Luckily I was able to chat with our Nurse Clinician and she reassured me that Eric's Oncologist thinks things look about the same as last time. He is responsible for the inpatient ward this week and hasn't had time to call to review the results, but is on all weekend so said he would call us over the weekend. Of course the kids both felt fine by mid-afternoon. We made pizza for dinner and watched The Wild Robot for Friday family pizza night. 

We are back to clinic Monday and Thursday next week, not Friday, since we're headed out of town for the weekend.