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. 

Monday, July 21 through Friday, July 25

Eric had a wonderful birthday weekend! He had so much fun with his friends and then later at Boston Pizza with Granny and his aunts and uncles. For his birthday he received 7 Lego sets and had them all completed by Wednesday! On Sunday, he was lucky enough to be invited to Playland with a friend. I have been lobbying for someone else to take him, since he's a thrill seeker and Joel and I don't do rides. Chuck does, but not at the pace of Eric; he needs rests and gingerale between rides. Anyhow, my lobbying worked out beautifully because Eric was able to join a thrill seeking family (his words: they're way better than you) and had a blast. It was perfect timing also, since it was right before he started another round of treatment, so he was also feeling really good. When he got home, Eric had me take this picture and send it to Auntie Becky so she would be jealous of his candy apple. 

Monday, Day 1 of 5:

On Monday, Eric started another round of treatment. We've opted to do the same as previous so we can enjoy some more of summer. It doesn't seem to be improving his condition, but it is keeping him stable for now. This means we drive to the hospital 5 days in a row for IV chemo. Our appointments are at noon Monday to Thursday so traffic should be good at least. Monday was an absolute gong show in the clinic. I'm not sure I've ever seen it like that. We did get a room right away, but the clinic was packed and they were short staffed. Some nurses were floated over from inpatient, but clinic is a very different pace so they struggled. We had a clinic nurse but she was trying to give chemo to more than one patient at the same time and was not succeeding. Eric's is only a 10 minute infusion; though he did have to have his port accessed first and was also given an IV anti nauseant. It took 2.5 hours; lots and lots of waiting. Eric's platelets were a little low, but not critical and we decided to do the transfusion Tuesday, since we were back anyhow and hopefully clinic would be less chaotic. On Monday, he also started his oral treatment; day 1 of 28.

Tuesday, Day 2 of 5:

Thankfully clinic was much less chaotic on Tuesday. We were there for 2.5 hours again, but this time Eric received a platelet transfusion in addition to his IV chemo and anti nauseant. Unfortunately on the way home there was a motorcycle accident on Hwy 1. Chuck had run into it and given us a heads up, so I turned on the GPS for the quickest alternate route, but every route was so backed up that it took us well over an hour to get home. 

Wednesday, Day 3 of 5:

So far this week we hadn't been lucky, but we figured Wednesday was the day. Eric was already accessed, he'd had platelets the day before, all he needed was his anti-nauseant and his super quick IV chemo and we were out of there. I guess we should have knocked on some wood. It started out great. Clinic wasn't busy and our nurse came into the room right away, with the anti nauseant already mixed up. She called for the chemo to be made. It has a very short expiry, only an hour, so the nurse calls for it to be made up when they are ready to go. I heard the Chemo Tech on the other end say they'd get to it in a couple minutes, so all very positive. But then we sat there, and sat there, and sat there. An hour or so later, our nurse comes in and says "I'm so sorry." Since this particular chemo has such a short expiry date, the chemo tech is supposed to hand it to someone. Unfortunately, they just placed it on the counter in the med room so our nurse didn't know it had arrived. Eventually she did go and check in there because she was surprised it was taking so long, and there was only 5 min left on the expiry, but it takes 10 minutes to infuse so they couldn't use it. We had to wait for it to be remade. We were, again, 2.5 hours.

Thursday, Day 4 of 5:

Ok, this has to be the fast day, right? We had initially thought that if he needed blood, this would be the day to do that transfusion, but his hemoglobin is pretty high still, so we don't need that. We planned platelets for Friday. So just the anti nauseant and super quick chemo, right? RIGHT?!?! When I walked up to the check in desk, I saw there were 4 or 5 families waiting in the hallway for a room and I said uhoh. The check in clerk said yeah, lots of people waiting, but then said oh actually we do have a room for Eric. I don't know how we got so lucky, but he'd been randomly assigned to this special room around the corner from all the others that has specialty equipment to treat blood disorders. (It's really cool; the machine takes out the person's blood, separates the bad stuff, and then puts the good stuff back.) However, the room wasn't being used that day. We had one of my favourite, very experienced, nurses and when I told her what had happened the day before and that we were hoping to actually be fast today, she said "challenge accepted." She had to mix up the anti-nauseant, started it, called for the chemo and it actually arrived quickly. We were out of there in about an hour. It was amazing! We left before his bloodwork results were back so I emailed his team for them later and his Nurse Practitioner said "sorry I missed you." I guess she'd been planning to come see us but we booked it out of there so fast she didn't get a chance! Luckily Eric has been feeling pretty good through this treatment so far since a friend had invited him over Thursday afternoon and he was so excited to go and had so much fun. 

Friday, Day 5 of 5:

Last day!!! Eric is excited to have his port de-accessed and be able to scratch under the dressing. Our appointment is at 10am on Friday because we actually have a ferry reservation in the afternoon. We've worked our way back and figure we have max 4 hours at the clinic so we don't miss our ferry. We've got platelets planned and the last dose of the IV chemo, so we should be good. Still, when our nurse walks in the room Eric announces that we are on a schedule. We weren't super fast, but did make it out in 3 hours. And Eric's doctor did make it in for a check up and to quiz me on his meds to make sure I'd packed all of them. He also told the nurse she could run the platelets a little faster. (WHAT?!?! We're there all the time! Why are we not always running faster???) 

All in all it was a very long, but uneventful week. 

I mentioned a ferry... we are headed to the Sunshine Coast for 10 days. We're spending 3 days at Granny's in Halfmoon Bay and then staying at our very wonderful and generous friends' place on Sakinaw Lake for 7 days. Unfortunately Eric can't go that long without a platelet transfusion, so he and I will be taking an intermission in our vacation. Sechelt does have a nice hospital, but no pediatric department so we aren't able to do the transfusion over here. We decided to take Harbour Air back to Vancouver instead of the ferry because we can land right downtown and then it's just a quick trip to the hospital from there. Also, with Harbour Air, our vacation interlude becomes another adventure. So far Eric is feeling pretty good; we're all hoping it stays that way so he can enjoy our vacation. 

Weekly Check Up Friday, July 18 + Turning 10!

Today is a very important day. It is Eric's 10th birthday! Double Digits! He is SO excited! He's having a couple friends over to play in the backyard pool and we rented a small bouncy castle as well. For dinner we're going to Boston Pizza with Granny, Uncle Dave, Auntie Jenny and Uncle Jay. Eric's current favourite is Boston Pizza's Bugs & Cheese. But first, we must have chocolate chip pancakes in the shape of the number 10. I made the pancakes but Eric did the decorating himself with whip cream and raspberries and blueberries from the garden!

Yesterday, Eric did have to go into the clinic for a check up, even though he was just discharged on Tuesday. His doctor wanted to make sure he had everything he needed for a successful birthday. His platelets had dropped off from Tuesday and were low, but since we are back on Monday, we probably could have held off until then, if it wasn't Eric's bday weekend. With the bouncy castle, trampoline, etc his doctor wanted him loaded up on platelets and then we don't have to worry about ending up in the ER from a non stop bleed. With the blood transfusion on Tuesday, his hemoglobin is actually in the normal range and it's been a long time since we've seen that. Eric is about 3 weeks out from the end of his last cycle of chemo so this is a bit of a rebound from the chemo suppressing the counts. Unfortunately, his counts wouldn't get much higher than this, even without the chemo suppression, because his messed up bone marrow just can't produce enough normal cells. They also won't have the chance to try, since Eric is starting a new round of treatment on Monday. We will be in the clinic everyday next week to receive the IV chemotherapy, but at least we don't have to stay inpatient! 

Eric's doctor and Child Life gave him an early birthday present yesterday in the form of a big Lego set. It was 1000 pieces and he still had it finished by 4pm, and that included a 45 min drive home from the hospital in the middle of his build. 

Last thing. Remember last week when I said that I was donating blood this week? And then my week was completely derailed by a hospital stay? Well I still managed to donate blood, and I dragged Chuck along with me! We went to the Surrey Blood Services center because the timing didn't work for a local pop up blood clinic. It's really close, just off 152 right over the bridge. Anyhow, they had a sign that said today your blood donation will take 45 minutes. Well, I was done in 35 and that included waiting for 10 minutes with the snacks after my donation. You have time to donate blood! Make your appointment today at blood.ca! This was my 10th donation and I even got a little pin :)