Weekly Check Up Wednesday, September 10

After how busy last week was, only going to clinic once this week feels very odd. 

We had a pretty low key Sunday, with just Eric's swimming lessons to attend. Eric made it to school on Monday and Tuesday. He is excited to be in his classroom with his friends and enjoyed gym (his favourite subject) on both days. 

On Wednesday morning, but not too early, we headed in to clinic. It has only taken 9 months, but it was actually scheduled as a platelet transfusion instead of query platelets. Our nurse came into our room less than 5 minutes after we arrived and said the platelets were already on their way. I think I love her!

Unfortunately, the day went downhill from there. Eric's Oncologist is applying for a new "therapy." When he first discussed it with us, it was in trials at Sick Kids in Toronto, but it was recently approved by the FDA so he is hoping that he will now be able to access it. In order to do so, he needed to submit a recent (within 2 weeks) echocardiogram and ECG. Eric's Nurse Clinician was able to get us an appointment at the Heart Center (in the hospital) for 1pm. Meanwhile, I had wondered if Eric would need a blood transfusion on Wednesday as well. He wasn't having any symptoms, but he had really dark pockets under his eyes. The blood test results usually come back pretty fast, but his platelet transfusion was done and we still didn't have them. Turns out there was a mistake between our nurse and the lab and the blood had to be redrawn, so Eric was going to have to stay accessed while we went down to the heart center and then come back up to clinic to find out if Eric needed blood or not. We were about to head down when our nurse found Eric in the hall and said oh good you haven't left yet! His hemoglobin was back and was only 76 so he would need a blood transfusion. She was able to draw the group and screen before we left so at least we'd be ready to go when we got back. We got down to the heart center before 1pm. They do walk in ECGs because they are super quick so I was hoping we could do that before the Echo, but no. 

Eric watching Monsters University during his echocardiogram

We finished up down there and headed back upstairs for the blood transfusion. It didn't seem like it took too long for the blood to arrive, but it was about 2:45 before it started. The blood transfusion takes about 2 hours and then de-access and we were out of there a little after 5pm. Of course it was rush hour on the way home, but traffic actually got better as we drove and not worse so that was a win. 

We were all exhausted but after a good night's sleep, Eric was able to make it back to school Thursday morning. His Neutrophils (germ fighting white blood cells) are so low that they cannot be measured, so he needs to be very careful about hand washing and wearing his mask. 

Next Thursday is an exciting day. Cops for Cancer has started their Tour de Coast to raise money for pediatric cancer research and fund Camp Goodtimes and will be driving/riding by Eric's school. All the kids will be assembling outside to cheer them on and they have invited Eric to tour with them for the afternoon. 

Next week we're at clinic Monday and Friday. 

Tuesday, Sept 2 though Saturday, Sept 6 + Biopsy Results

September is Childhood Cancer Awareness Month, a time when we come together to recognize the brave children fighting cancer and raise awareness about the urgent need for more research. Did you know that only 7% of the total cancer research funding in Canada is allocated to pediatric cancer? This is a staggering statistic considering that cancer remains the leading cause of death by disease in children.

We enjoyed the last (long) weekend of summer vacation at Halfmoon Bay with Uncle Jon & Auntie Becky. They hadn't been since our wedding 16 years ago! We had a great time both relaxing and adventuring. We played a lot of cards, went to the Farmers and Artisans Market in Sechelt and hiked the Skookumchuck Narrows trail. At the end of the trail we were rewarded not only with the view of the turbulent tidal rapids, but also a large pod of porpoises and a few seals. Joel came with us, but the walk (8km) is too much for Eric, so he stayed back with Chuck and they explored a new to us beach. 

Tuesday the kids headed back to school, briefly, and then we all drove into Vancouver. Eric was scheduled for a check up, platelets and IV chemo to start the next round of treatment. Joel had an optometrist appointment nearby. 

Wednesday was a full day of school but Eric only went for a half day because he had to go back into clinic for Day 2 of treatment. The clinic was FIVE nurses short on Wednesday which is crazy, but they still managed to get us out in under 1.5 hours. It was really smoky in Vancouver and smelled like smoke when we got out of the car. On the way out we had to wait a few minutes for the valet and it was bothering Eric's throat/lungs so badly that he went back into the building to wait. 

Thursday Eric didn't go to school at all. He was tired from his treatment, sore from walking up the hill to school and worried about the smoke. Usually when he has this IV treatment, he doesn't go to school at all for the 5 days, but since it's the first week back to school he had wanted to go initially. He hung around in his pjs this morning and then we went back to clinic again for Day 3 of treatment. This time we were there just over 1.5 hours. I did spend most of Thursday thinking it was Wednesday and then most of Wednesday thinking it was Thursday, so much so that I forgot to go to the BCCH pharmacy to pick up Eric's meds. 

Interestingly, I had also forgotten to ask for the biopsy results until Thursday, maybe because of the busyness of back to school as well as the hospital all week or maybe because we started another round of treatment prior to getting results, which is a bit out of order. Eric's Oncologist is still calling him "stable" but the donor chimerism is at 10% (16% at last check) and they are seeing an increase in blast cells as well. Though, apparently they are "clumpy" and it's hard to know if they caught a clump or not. 

Friday Eric's appointment was an hour earlier than the rest of the week, so it would have only been 2 hours at school so we decided to skip it. Hopefully next week once he is in his new classroom with his new classmates he will be ready to get back into the rhythm of school. We headed into the hospital for the 4th day in a row for Day 4 of IV chemo and a platelet transfusion. I snapped a sneaky pic of Eric on the way home. This is what happens after 4 days of treatment and 4 days of driving into the hospital. 

Saturday was the last day of IV chemo, day 5 of 5. When our appointment was originally booked, it was scheduled on the inpatient side because the clinic isn't open on Saturday. However, they had enough kids needing Saturday treatment that they couldn't accommodate them on the inpatient side so they opened clinic for four hours today. Eric's nose started bleeding minutes before we got in the car to drive to clinic. Unfortunately, it didn't stop the whole way there. We got to clinic and asked for a dose of Tranexamic Acid. The nurses were actually a bit reluctant at first. There's only 2 of them and everyone there is supposed to be a quick in and out and it wasn't ordered and a doctor is sometimes difficult to find on a weekend. Not that they aren't there, they just have more patients. Anyhow, the head doctor for the entire department happened to be there and Eric was their only patient for the first hour, so we got lucky. The doctor ordered the TXA right away and also got him a warm blanket and an OJ. She was so sweet. The TXA runs pretty quickly, but takes time to get made up and delivered from the pharmacy so we lost about an hour to that, but it did make his nose stop bleeding finally. He got his anti-nauseant, last dose of the IV Chemo and had his port de-accessed. He was so happy to scratch his chest once the dressing was removed. 

It's been a heck of a busy week and we are looking forward to an easier weekend and week ahead 🤞

Weekly Check Up Monday, August 25 and Thursday, August 28

We had a great time at Camp Goodtimes Family Camp. What a magical experience! Well, except the mattresses. OMG. Eric kept saying he was sleeping on a bag of bricks, but it felt to me like I was sleeping on the floor. It was pretty hot last weekend, but being on the water and in the trees was lovely. There were family activities and separate parent and kid activities. Chuck and I had a nice paddle in a canoe one morning. Joel played gaga ball every chance he got and Eric dragged us to the waterfront the rest of the time. We had campfire, skits, repeat after me songs (repeat after me songs), friendship bracelets, Chameleon, great food and met some amazing people. There was even an opportunity to go tubing one afternoon. 

On Monday morning, August 25, we said goodbye to camp and headed to Nanaimo. We had wanted to stay on the Island a couple extra days but couldn't do that without platelets. Luckily, our team connected with the pediatric team at Nanaimo Regional General Hospital and they were very happy to accommodate us. They had warned me in advance that it might be a bit slower than we were used to, and it was; however, we were just so happy that they were willing to do the platelet transfusion that we didn't mind. Once Eric was all topped up with platelets, we continued on to Qualicum Beach. We had stayed at Riverside "Resort" a few years ago and the kids loved it. They have 2 pools, a waterslide, mini golf and a camp store with slushies. This time we were so exhausted from camp that we needed a bit more recovery and relaxing time. However, we still managed to make a trip to Coombs to see the Goats on the Roof, and to the North Island Wildlife Recovery Center, as well as, to enjoy the waterslide, mini golf and GIANT ice cream cones (the slushie machine wasn't in use.) 

We arrived back home about dinner time on Wednesday. I got to cuddle Millie and all of us were happy to be home and to sleep in our beds. 

Eric's next appointment was on Thursday, instead of the normal Friday, because, surprise, surprise, we were headed out of town again on Friday! Eric was due for a Bone Marrow Biopsy so we had an early appointment and Eric had to fast. Of course, he always needs platelets and his hemoglobin was also a little low in Nanaimo on Monday. He let Kristina from Child Life know that it was an "everything" day and that also meant a Lego day. She was happy to oblige and gave Eric a Lego Ideas 1000+ piece insect set. His nurse was great and got the platelets in prior to the biopsy. Eric was worried that as it was his first biopsy as a 10 year old he might be much further down the list. He was 4th, but they came to get him at about 10:40am which didn't seem too bad. He was a bit groggy, and goofy, when he got back to the room. His nurse called for the red blood cells then and started them around noon. We got out of the hospital a little after 2pm, but it was a loooooong day. 

Eric waiting outside the Space (Procedure) Room on T8 before his biopsy. 

Back at home we had to pack, AGAIN! What was I thinking?!?! Also, why did we even bother unpacking? Uncle Jon and Auntie Becky arrived, from Prince George, on Thursday evening and on Friday morning we headed to the ferry for a visit to Halfmoon Bay with J&B. We get home Monday night and then back to school Tuesday morning. We are squeezing every last drop out of this summer vacation! 

Eric's next clinic visit is Tuesday, after 45 minutes of school in the morning. His doctor also wants to start another round of treatment Tuesday, even as we wait for the biopsy results. 

Weekly Check Ups Monday, August 18 and Thursday, August 21

Another week at home, but this one seemed busy! Maybe because it wasn't a full week and we had a lot to cram into it.  

Saturday evening we had a Mundie family reunion at Richard & Noni's new place in Olympic Village. The view, the food and the company were all spectacular. It was great to catch up with the family that was there and we hope to see the ones who couldn't make it soon. 

On Sunday we went back into Vancouver for a matinee performance of Much Ado About Nothing at Bard on the Beach courtesy of Starlight Children's Foundation. We really enjoyed it. The play is a comedy and the actors used some great physical comedy as well, so the kids were laughing even when they didn't understand the Shakespearean English. 

Eric finished this round of oral treatment Sunday evening. He had his check up Monday this week after receiving a platelet transfusion the previous Wednesday. Unfortunately, his platelets were <5. I guess it isn't a huge surprise at the end of a round of treatment, but I don't like it! He got his platelets and we were headed out after about 2.5 hours. It was only a little after 12:30 so I mentioned to Eric that traffic should be pretty good. Why? Why do I jinx myself every time?!?! Coming down Clark Street in Vancouver toward 12th Avenue I hit the curb and got a flat tire. Only flat tire might be a bit of an understatement. A large flap ripped right open on the side wall. I called BCAA who asked if I had a spare - duh, who doesn't have a spare and they said they'd send someone out to change the tire within the next 1.5 hours. Well forget that, I'm going to change that tire myself. I haven't done it since I was 16, but why not? So I flip open the cover in the hatchback and guess what? NO SPARE TIRE! So I call BCAA back to let them know I actually don't have a spare tire. Apparently this is common in "modern" cars, but my car is also a plug in hybrid and there's a pretty big battery where I thought the spare tire should be. The modern cars come with a tire repair kit instead. However, as I said, it was no small puncture that could be repaired road side or otherwise. BCAA said they'd send a tow truck (in the next 1.5 hours) to take us to the closest tire shop which was only 4 or 5 block away. While all this was happening, one of the nurses that we see regularly at Children's pulled up to get propane. (I had parked at the Super Save Gas on the corner of Clark & 12th.) She tried to help, but not much we could do at that point. She did call the nearby tire shop to see if they had what I needed and I'm glad she thought of that because they didn't! They did say they could get it for us the next morning, but that wasn't going to help me much right then. So I called BCAA back and cancelled them altogether. Then I called Chuck and he drove out to us with the winter tires for my car, and the jack and everything as well, since if you don't have a spare tire, you also don't have a jack. 3 hours after we left the hospital, we made it home. 

Tuesday was over to Auntie Jenny & Uncle Jay's house for a visit and swim. Unfortunately, Joel wasn't feeling well, so I stayed home with him while Eric and Chuck went for a visit. 

I was sad to miss the visit, but ended up working out well for me because if everything had gone to plan, I would have had only Wednesday to do all my errands and chores and pack for the Island. Wednesday was chill day for the kids; laundry day for the adults so everyone would have clean clothes to pack. 

Thursday, Eric and I headed back to clinic. His second appointment was Thursday this week since we're taking a ferry Friday morning. His nurse was so organized that the platelets arrived on the floor just as she was preparing to do his port access, so she was able to get them started immediately. Surprise for us - the doctor had ordered TWO units of platelets. Eric has never had that before and it doesn't give you any more longevity since platelets die in 2-3 days. However, I guess since he'd been less than 5 his last 2 visits, they wanted to give him a bigger boost so they'd sleep better knowing that he was probably going to be wild and crazy (aka 10 year old boy) at camp. Since our nurse was so on top of it, it only took a few minutes longer to get the 2 units of platelets than it did to get the one on Monday. She kept saying she was nailing it and I did say she deserved a gold star, but could she wait until we actually made it out of the building so she didn't jinx us! Luckily, everything went smoothly with the transfusions and the drive home. 

Today, Friday, we are headed over to Vancouver Island. In fact, I am writing this on ferry and can see Nanaimo getting closer and closer. We are going to stop at Troller's Fish & Chips in Nanaimo for lunch. Thanks for the recommendation, Tash! Then we will head to Shawnigan Lake for Camp Goodtimes Family Camp. It is 3 nights but we thought we'd make an adventure of it so we're going up Island for a couple days after. Of course, Eric can't go that long without a platelet transfusion, but the lovely people of the pediatric unit at Nanaimo Regional General Hospital have agreed to host us for a few hours Monday.  

Weekly Update Wednesday, August 13

It's been nice to be at home for a bit. Eric was able to go to his swimming lesson on Sunday for the first time in many weeks and we also were able to book him a make up lesson on Monday. His instructor was so impressed with his strokes, including "recognizable" butterfly and flip turns, that he completed Shark 1 and moved up to Shark 2! 

Joel's been away at an overnight camp all week and Eric is enjoying being on his own for the week. He had a friend over one afternoon and we went to Buntzen Lake with some friends another day. I asked Eric to make dinner one night and he chose to learn to make homemade mac and cheese and it was delicious! We picked blackberries and Eric wants to make a pie! Actually I think he wants me to make a pie, but we'll see...

Eric had his check up at clinic this week on Wednesday. The platelets had been pre-ordered but when his bloodwork came back we discovered that he also needed red blood cells. It wasn't terribly surprising as he'd been a little headache-y the evening before and was quite pale. We ended up being at the hospital for 5.5 hours, but our wonderful Child Life Specialist gifted Eric a LEGO set and we were happy to chill there for awhile. The only downside was the traffic on the way home since we ended up hitting rush hour. 

We're picking up Joel this afternoon and then home for exactly one more week. We leave next Friday for Camp Goodtimes Family Camp on Vancouver Island. Eric finishes his oral treatment on Sunday and next week he is in clinic both Monday and Thursday to get all topped up before camp. 

Weekly Update Tuesday, Aug 5 and Friday Aug 8

I'm a little late updating on last week. I think I might still be recovering from our vacation. 

Eric on vacation with Crayfish in hand. 

We did make it back from our vacation without any further incidents. Though Eric and I did have a disagreement over what taking it easy on the tube looked like, of course! We had such a wonderful vacation and really didn't want to leave (thanks again D&R!) but we are also happy to be home. Heading to the hospital was a little rough on Tuesday morning. Eric didn't want to leave the house so early (9am). As he was putting on his shoes, he said he hadn't taken Cetirizine (Reactine) which he now takes before leaving the house for his platelet transfusions. That's when I realized that we'd also forgotten to put numbing cream on his port. We got both those things taken care of and headed out to the car when I realized that I didn't have car keys. I went back to the house to get the keys, got in the car, started it and began to back up when I realized I didn't have my driving glasses, so back to the house again. Eventually we did make it out of the driveway and all the way to the hospital. 

Clinic had needed to open up on the holiday Monday, so it wasn't too busy on Tuesday, but it was sloooooow. We were there more than 2 hours before the platelets were even ordered and 3 before the transfusion started. No surprise that Eric's platelets were less than 5. His legs are still covered in bruises, but now he's also got a few nasty ones on his arms including a big fresh one on his shoulder and a huge one over one hip. He says that tubing was definitely worth it. Of course, he really only knows about the bruising and not the risk of internal bleeding. The Fellow gave him the once over and wasn't too worried. Eric does also have a skinned heel from trying to kick his brother and scraping his heel on the patio stones instead. The Fellow was mostly only worried about if he'd actually managed to kick his brother or not. 

A local blueberry farm sells cases of blueberries at the hospital 2 days a week during blueberry season. I was able to buy a case of those and hold off grocery shopping, since Chuck had already popped out to get milk when we first got home. 

We were back to clinic on Friday and one of the other T8 (that's the oncology floor) families were selling cherries and plums to fundraise for the hospital. I still hadn't been shopping, so definitely loaded up on those! Amazingly, Eric's super bad bruises from Tuesday actually looked slightly better. With only 4 days since his last transfusion, not 5, his platelets were 11 and luckily his hemoglobin was still 91. The clinic was super busy, but through a tag team of nurses, we got in and out of there in decent time. 

We did restart Eric's oral treatment when we got back home on Monday night, so he only missed 4 days and, as of Friday, was on Day 19/28. I spoke with his doctor on Friday, but we're not going to add anything else in at this point. We'll just get through this round and the rest of summer break and then maybe add something in for the next round. 

We're home for a few weeks now, except Joel who is at an overnight camp this week. 

Weekly Update Wednesday, July 30

Hello from beautiful Sakinaw Lake and thanks to D&R for their hospitality! I am currently sitting here with a tea in hand overlooking the lake and I never want to leave. That's ok, right D&R? Unfortunately, there are a few doses of reality sprinkled here and there, but for the most part, we're all enjoying our family vacation. 

On Friday we took the ferry over to Granny's place in Halfmoon Bay where she spoiled us rotten with love, Scott's famous bacon and ice cream bars. Millie fetched sticks in the ocean and Eric fished for Shiners off the dock. He caught Thomas and Abby and Chuck caught Gregory. Apparently we name the tiny catch and release fish for the brief period they spend in the bucket. 

Reality Check #1: on Sunday night Eric had a really bad bleeding nose. His platelets are always low and his nose bleeds frequently, but just a little. This was not just a little. It was a lot, and while he was getting some clots, they kept coming out and were not sufficient to stop the bleed. The fact that he was clotting means he did have some platelets. However, since our next scheduled appt wasn't until Wednesday I was dismayed by all the platelets he was using up to not even stop the nose bleed. I wanted to put them back! With some Tranexamic Acid orally and right up the nose, and pinching and an ice pack to the back of the neck, we did eventually get it to stop. 

On Monday, we packed up and headed to D&R's on Sakinaw Lake. It was a quick trip and once we unloaded, we had plenty of time to play in the lake. On Tuesday we had such a great day: tubing (when can we go tubing? how much longer? what time is it now? is it time for tubing?) playing in the water, tubing some more, playing board and card games, eating some delicious local corn and playing Telestrations (when can we play Telestrations? are you done cleaning up yet? can we play now? how much longer?) 

Reality Check #2: Eric and I woke up early on Wednesday morning to drive to Sechelt. From there we took a seaplane to Nanaimo. In Nanaimo we deplaned, went up to the departure lounge and waited for our plane to be called. There's no longer a direct flight from Sechelt to downtown, so we had about a 20 min stopover in Nanaimo. It was a beautiful day and a smooth flight, if you don't count the vomiting and weeping (2 separate people, not us) on the first flight. We landed in Vancouver Harbour and took a taxi from the taxi stand across the street up to the hospital, which was less than 20 min. We arrived at the hospital right on time for our 11am appointment, both of us thinking that at that point, we should already be done for the day! We headed upstairs, Eric's port was accessed and his nurse called for the platelets right away. I'm dreaming that we're going to be done early and have a couple hours to kill so we can sit at Cactus Club right above Harbour Air with a drink and a snack. Clearly it was a mistake even thinking such a thing. Shortly after the platelets had started, we learned that Eric's hemoglobin was 81. He typically gets symptomatic around 80, but a red blood cell transfusion takes awhile and we had a flight to catch and no options for a later flight. Eric's Nurse Practitioner called Transfusion Medicine to find out how fast we could get the blood upstairs. She figured if they could do it inside 20 minutes, then it was worthwhile, so that is where we started. Luckily they said they could get it up in just 10 or so. So the NP said get as much in as we can before we have to leave. She called it a "gas station top up." The nurse ran it a bit faster than typical and he got most of the bag in before we had to go. We speed walked to the taxi stand at the hospital and got to the Harbour Air check in line ONE MINUTE before the cut off, which is only 20 min before the flight. We had a smooth flight back, with a stop over in Nanaimo. Eric slept through most of both flights; though I did wake him up to see the whale that we flew over. Back at the Sechelt Harbour we saw a seal who waved at us underwater and a couple massive jellyfish. In addition to all the aquatic wildlife, we saw a bear on the way back as well. 

Reality Check #3: Eric's platelets were <5, which is the lowest they measure and his hemoglobin dropped 30 points in only 5 days. Eric's Oncologist is away this week, so we saw his Nurse Practitioner and a Fellow. As of the appointment, Eric was 5 days out from the end of the IV Chemo and 10 days into the oral treatment. These both have an impact on his blood counts, and that big nose bleed could explain the rest. However, the Fellow was concerned enough he wondered about stopping Eric's oral treatment. He was going to go talk to the rest of the team and let us know. Eric's NP did email to let us know the team discussed and thought we should pause the meds. Of course, I didn't read the email until after Eric had already had his Wednesday dose. I spoke with his NP over the phone in the morning and felt better after having a discussion with her and learning that it was a pause and not a stop. Their thinking was that it would allow us to have a better vacation while we're a bit remote. She also said they pause treatment all the time for a variety of reasons, but we've never really had that before. 

Thursday and Friday, back to vacation as scheduled. However, Friday afternoon was Reality Check #4 when Eric got another bad bleeding nose. We're used to him having lots of little bleeding noses, but he's only had a few of these big ones. It's a bit scary not knowing if we'll be able to stop it or not. Luckily, we were able to stop it, but of course Eric has now lost more blood and more platelets. He's not going to like it, but I think he's going to have to take it easy on the tube for the last couple of days of our vacation. 

We head home on Monday and back to the hospital on Tuesday. Fingers crossed for no more reality checks to interrupt our vacation.