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 :) 

Hospital Day 3/3

2 nights, 3 days and 4 Lego sets later, we're out of here! Almost. 

Eric has had 48 hours of IV antibiotics, as a precaution, but his blood and urine cultures were negative. Surprisingly, his nasal swab was also negative, but he clearly has a virus. That just means it's not one of the common viruses they test for. Most of his symptoms are gone now, but he developed a nasty cough. Yesterday's doctor sent him for a chest x-ray because she suspected pneumonia, but that was negative also. 

Eric received a platelet transfusion on Sunday when we were admitted and amazingly his platelet count is still decent today. Unfortunately, his hemoglobin is dipping faster than I'd like. He had a red blood cell transfusion in clinic Friday and is having another before we head out. That's why we're still here (4:45pm on Tuesday); just waiting for the blood to finish and then we're headed out into rush hour traffic. Though I'm so happy to sleep in my own bed that I don't think I care. 

Eric's Oncologist wants to see him in the clinic on Friday and then he starts another round of treatment Monday. 

Thank you to Nikki and Chuck for the Lego :) 

Hospital Day 1 of ?

In accordance with Murphy's Law and best laid plans and all that other crap, Eric woke up this morning with a fever. He was a bit hoarse when he came home from camp, but thought it was from all the chants. However, this morning he was also congested and coughing, and then that damn fever. It is the fever that has landed us in hospital. Even though he clearly has a cold. Out of an abundance of caution, they need to do blood cultures and start him on antibiotics. I expect we will be here 3 days. Eric has already added a countdown to his birthday - 6 days - on the white board in his room so everyone is clear that he will be leaving prior to that. I had to cancel his swimming lessons for today and his WCK camp for the week. I am sure glad I saved (didn't let Eric build) all the amazing LEGO gifts that we received and Eric didn't have time to build during his last admission. After about 3 hours in the ER, we are settled in a room on T8 and he's already started building. 

Thank you to Arabelle and family for this awesome Ninjago set. 

As always, he is feeling just fine now that he has been admitted. Please wish us a speedy exit! 

Weekly Check Up Sunday, July 6 and Wednesday, July 9 AND Friday, July 11 + Biopsy Results

This has been the best week, but also not the best week. 

We had to go into the hospital on SUNDAY this week, because the kids were headed to overnight camp Sunday afternoon and Eric needed a platelet transfusion before camp. 

Reminder: Camp Goodtimes is a medically supported, free camp for kids with cancer and their families. Cops for Cancer fundraising provides for this camp as well as pediatric cancer research. Please check out Cops for Cancer for any activities in your community. Cops for Cancer

Eric spent the hospital visit and drive just super excited for camp. The hospital visit was longer than we would have liked when the intent was just to get platelets and GO! But the drive was amazing on Sunday morning. 

Eric and I went home, picked up Chuck and Joel and headed to camp in Maple Ridge. We checked in, which is a bit of a process because you go through all the meds, and dropped the kids at their respective cabins. Both kids are in the same cabins they were in last year with the same age groups. Joel's Skip (counsellor) is actually Eric's favourite volunteer at the hospital. Eric, who is usually glued to my hip, was very eager for us to leave. Apparently I am embarrassing. That's new, and surprising, from Eric. However, I have a teenager, so my ego was not bruised. Both kids humoured me with a picture on arrival. 

The kids had so much fun last year that I was not as worried to leave them this year; though, I was worried that Eric wouldn't have as much fun because he was in a much better place last summer than he is this summer. No kids at home Sunday night, all of Monday and all of Tuesday = amazing! We all needed a break from real life (cancer, hospital, meds, etc) and Camp Goodtimes provides that. 

On Tuesday afternoon, I had an email from Eric's nurse clinician that the initial results were back from the biopsy, looking at the marrow under the microscope, and it appears much the same as last time, with no increase in blasts. 

On Wednesday morning, I had to go pick Eric up from camp and take him to the hospital for a platelet transfusion. This very inconvenient intrusion on our camp break had been preplanned to keep Eric safe at camp with all the activities that they are doing there. I left at 9:30am for a noon appointment. Eric was excited to see me, but I also learned that there was no need to worry about him having fun at camp. He's having a blast and chattered on about camp all day. It was actually raining on Wednesday, so it was a good day to miss, but despite the rain, Eric still did "Rip n' Dip" that day. That's when you wake up and jump in the lake at 7:30am before breakfast. Here's a pic of Eric from the Camp Goodtimes instagram doing Rip n' Dip on Tuesday morning. 

The clinic was super good about getting his platelets upstairs and started as quickly as they could. Eric, who had been without screens for a couple days, seemed to be enjoying his clinic visit. Here he is with his ipad, a pb & j (don't tell Joel) and a new Harry Potter Lego set that Kristina from Child Life gifted him. 

Eric's platelets were just finishing and he was getting stoked to head back to camp when his doctor came in and that's when things started to go downhill. The doctor walks in the room and asks me if I had seen his hemoglobin, but I hadn't seen it yet. He advised me that it was 77. Eric typically becomes symptomatic around 80 with headaches, lethargy, and sometimes dizziness. My heart just fell. He was so excited, and ready, to get back to camp, not to wait for an hour for the results of a group and screen and waiting for blood to arrive and another 2 hours to transfuse the blood. I told his doctor that he was ready to go back to camp and his doctor asked how he was feeling and when camp was done. Then his doctor went to talk to a couple people. He came back and said that the clinic and the inpatient ward had both agreed to let Eric come in on Friday afternoon, after camp, for a blood transfusion. I can't say enough how wonderfully accommodating these people are in allowing us/Eric to do the important things outside the hospital. The doctor had to get both on side because the clinic closes for the evening and it is likely that we will have to transfer over to the inpatient ward to finish off the transfusion. I both love and hate this plan. Eric got to go back to camp which was the most amazing part. However, I (we) now have to go back to clinic for a third time this week! I was also worried that Eric would begin to have symptoms at camp and wouldn't make it through the rest of camp. 

With that planned, and the platelets now finished, Eric was eager to leave. However, Eric's doctor also had the results from the biopsy. He asked if we could set up a time to discuss on Friday. I said yes, but asked for the numbers in the meantime. The chimerism report states that he's got 16% donor marrow and, unofficially (since the dr just had a verbal report,) the cytogenetics shows the dysplastic (broken) cells matching the chimerism. That means approx 84% dysplastic, with the 16% healthy donor marrow, adding up to 100%. You may remember that following the last biopsy, for the first time, this did not add up to 100%.

I took Eric back to camp and enjoyed a kid-free Thursday. 

Friday at 1pm, Chuck and I went to pick up the kids from camp. We ended up having to take 2 vehicles so that Joel could come home, while Eric went to clinic. We expected a nice easy Friday afternoon drive, opposite rush hour. However, there was a car fire on Hwy 1. Seriously, I can't make this stuff up. Traffic was a nightmare and we arrived super late to clinic. 

Eric did feel well through the remainder of camp, but just before arriving at the hospital, his head started hurting quite badly. He was squeezing his eyes shut and gritting his teeth. Our nurse was ready to go and he was accessed quickly. She also got permission from our doctor to give him Tylenol for his head. He is not typically allowed Tylenol because it could mask a fever which is an important indicator of a potential infection, so he takes hydromorphone for pain, but it doesn't work that well for a headache. For one off headaches with no other symptoms, and if we take his temperature first, we do sometimes get the okay to give Tylenol. 

The blood was ordered and they planned to get started as soon as they could, but they had to do a group and screen first for blood typing. I went to chat with Eric's doctor and when I came back the blood had just started, but apparently I was gone FOREVER! We did have to move over to the inpatient unit because the transfusion went longer than clinic was open. The blood finished just before 6; with a flush and de-access and we were out of there by 6:30. 

So the chat with the doctor... He reiterated that we are "stuck" and also that he has some concerns about how long this is sustainable for. We're attending the hospital every 5 days right now for platelet transfusions. Is that going to increase? Is Eric's body going to develop antibodies against the platelet transfusions? We've been lucky not to have a major bleeding incident that lands us in the ER, so far 🤞Additionally he is becoming more dependent on blood transfusions, increasing from about once a month to every two weeks. His doctor is applying for a med that stimulates platelet production. It is used for something else, but apparently has been somewhat successful in situations similar to Eric's. There is a risk that it might stimulate the wrong cells, but if it works, it may mean we'd have to go to the hospital less often. Additionally, it is well tolerated, from a side effect perspective. 

The current combo of treatment is working to keep Eric stable, but not to improve the situation. His doctor would like to add another med to the combo. He applied for one last month and was declined. He is going to reapply for it, along with the Selinexor (little blue pills) that Eric had before. Unfortunately, the Selinexor made Eric quite ill. His doctor has to request approval because these medications and combinations of medications are not approved for use in children. He has to demonstrate studies in which they have been used safely in children with similar conditions to Eric. Eric continues to be very unique and there is no playbook for his situation. 

For now, Eric will start another round of the same - 5 days of IV chemo and 28 days of oral treatment - on July 21. Eric tolerated the last round very well and while it may not move the needle, it will likely continue to provide stability while allowing us some fun summer activities. Eric's doctor has our schedule and based on approvals and our plans, he may add in an additional med toward the end of the cycle. 

The kids are off to the WCK (West Coast Kids Cancer Foundation) day camp in Surrey next week. After camp on Monday, I am taking Eric to Surrey Memorial for a blood test to determine if we have to go back to clinic on Tuesday or Wednesday for a platelet transfusion. I am hoping for Wednesday, which is why we are doing the blood test, but not actually all that optimistic that his platelets will hold that long. 

Finally, I'm allowed to donate blood again as of Wednesday next week, so planning to fit that into my schedule. Please remember to donate blood! There are lots of vacant appointments through the summer as people's routines are disrupted. 

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