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. 

Weekly Check Up Monday, May 12 and Friday, May 16

I think I've been procrastinating writing this update. Monday was a hard day for me. 

But first, last Sunday was Mother's Day. My sweet family surprised me with a hanging basket and a book and cinnamon buns. Later we went to Granny's to celebrate the May family birthdays - Granny, Auntie Jenny and me. Finally, we headed to Boston Pizza for Mother's Day dinner out. Eric enjoyed it so much that he asked if we could go back for his birthday, which isn't until July! Eric also finished his 28 day cycle of oral treatment on Sunday. 

So, Monday... it was my birthday and we had to go to clinic, but that was fine. Eric would get his platelets and we'd get home and still have the afternoon and evening. However, Eric's bloodwork came back and he needed blood. His hemoglobin was 78 so the doctor said we could probably wait until his Friday appointment, but he typically will get headaches under 80 and I didn't want either one of us to have to deal with that for a week. I try and manage expectations and had told Eric that this was a possibility, but I guess I forgot to tell myself that. My eyes started leaking as soon as they told me he needed blood. Between my expectations for the day, and the conversation with Eric's doctor last week about how he hasn't needed blood for over a month and maybe that's a good sign, I fell apart. I was chatting with the Child Life Specialist and saying that I've become such an expert at keeping it all together, all damned up, that it only takes the slightest nick for it to all come pouring out. I kept crying on and off the whole time we were at the hospital, and it was a long day. Luckily Eric is still working on the project he is building for the playroom, so that kept him entertained. 

When we changed from the short stay side to the infusion side of clinic, we didn't see a nurse for awhile. Oh, and the room we got moved to didn't even have a recliner! Eventually the nurse started the premeds, but then the platelets weren't ready right away, and then blood wasn't ready when the platelets finished. We were there for 7 hours, hit rush hour both ways, and didn't get home until about 5:20pm. A couple of wonderful friends had left a bottle of wine and some bubble bath at my door while we were out, and that was the start to a much better evening. I put the wine in the freezer, ordered sushi and laid down for 10 minutes. The evening was lovely: wine, sushi, gifts and a cake made with so much love, topped off with a bubble bath before bed. 

With Eric loaded up on all the blood products and having finished his cycle of treatment, I was hopeful he would go to school during the week. However, on Tuesday, Eric and I both needed a day to recover. We both spent the day in our pajamas, which is normal for Eric, but I got a solid 36 pajama hours in and it was amazing. On Wednesday I had hoped Eric would go to school, but he had a big sleep in and then a bleeding nose and just wasn't feeling it. On Thursday he was a bit more motivated to get to school and was able to spend the whole day. It's the first time he's been to school in a month maybe. 

On Friday we were back to clinic for a scheduled bone marrow biopsy, so we had an early appointment. After the platelet disaster surrounding the last biopsy, I had asked the doctor to pre-order the platelets so the transfusion could be done in advance of the biopsy. Eric, as always, just wanted to know how many people were on the list. We were initially told 6, but turns out 2 people dropped off and I think Eric ended up third. His platelets were actually just finishing as we walked into the procedure room. When Eric woke up he had his pb & j sandwich and a chocolate milk, followed by all the rest of the food that I had packed. Eric likes to chill a bit while the anesthesia wears off. About an hour after he woke up, they kicked us out, nicely, but they needed the room. I was pretty happy about it because I didn't have to convince Eric that it was time to go and we ended up home before 2pm. 

We are now waiting for the biopsy results, along with the split chimerism results from the previous week. Next appointment is Wednesday and in the meantime, we will enjoy the long weekend!