Hospital Day 2/?

Well my long weekend home alone was a bit shorter than anticipated. Saturday night Eric started to feel poorly. He went to bed hoping to wake up feeling better Sunday morning, but when he didn't, Chuck decided to come home early. It was a good call since Eric spiked a fever as they loaded on the ferry. He can get very sick very quickly and a fever can be life or death, so trapped on the ferry wasn't the greatest place to be, but we made plans for them to drive directly to the hospital and for me to meet them there. Conveniently, I had time to shower and pack a bag before driving to the hospital. Luckily clinic was open so we were able to bypass the ER, which is a huge win. I had assumed that he would be admitted, but our NP did come by and confirm that. He was admitted yesterday and we've spent one night in hospital so far. Does that make this day 1? or day 2? I decided on Day 2 since we arrived yesterday. 

Upon arrival, Eric actually didn't have a fever, but he did have a wicked headache. He got his port accessed, blood work, blood cultures, urine cultures and a brain tickling nasal swab. Once all that was done, he was allowed to have Tylenol. He doesn't seem to have a cough or runny nose at all, but Joel did develop a runny nose over the weekend. They started him on IV antibiotics right away, which is the fever protocol, in case of blood infection. 

When we were able to move over to the ward about 1.5 hours later, his head was feeling mostly better. Child Life on the inpatient side left a Lego set for him, which of course spurred him to feel well enough to sit up. For some reason only some of his meds were ordered so he ended up staying up until almost 10pm waiting for the others. Luckily, he almost finished his Lego set in that time...

This morning, Eric woke up a little after 8am feeling pretty good and he finished off his Lego set. Unfortunately, that seems to have been the highlight of the day. By 10am he was feeling pretty crappy. Still no fever, but his head was hurting again and he curled up in bed to just chill and watch tv. A Resident came by and I chatted with her for a bit. His nasal swab was positive for Entero Rhinovirus, so a common cold. Additionally, Eric's platelets are low, as they always are, but not critical. However, he has a couple of super loose teeth and they're bleeding a little so she figured it would be best to do the transfusion today. Finally, his hemoglobin is down substantially from yesterday, but that is likely just a product of how dehydrated he was yesterday. He doesn't need a blood transfusion yet, but will soon. 

As long as Eric doesn't spike another fever, I am hopeful they will let us go home tomorrow. 

Weekly Check Up Tuesday, Sept 23 and Friday, Sept 26

Both kids had their Terry Fox runs this week. While the Terry Fox Foundation is undoubtedly a wonderful organization, I would like to remind people to doublecheck where your donation dollars are going. The Terry Fox Foundation raises over 98% of their funds by kids in schools, but only spends about 6% of those funds on pediatric research.

If you want to support cancer research, absolutely donate to the Terry Fox Foundation, but if you want to support pediatric cancer research, please consider donating to the Michael Cuccione Foundation or Cops for Cancer. And now I will get off my high horse. 

Last Friday we knew Eric's hemoglobin was getting low and he would need a transfusion soon. He didn't do much this weekend - Lego, iPad - until swimming lessons on Sunday. However, less than 15 minutes into his 30 minute lesson he called me over to tell me that he was super tired and his head was hurting, so we decided to call it a day and went home for a warm soothing bath. 

Monday he woke up ready for school, but wanted a ride there in order to conserve his energy. He also said he might not make it through the whole day, but he did! We had a make up swimming lesson scheduled for Monday night and that was a great big no way from Eric. The school day sapped every last ounce of his energy. 

We were into the clinic on Tuesday this week in order to make the trip to the Sunshine Coast this weekend happen between hospital visits. I am actually glad it wasn't a Wednesday appointment because it is nice to get him his red blood cell transfusion and know that he will be feeling better the rest of the week. Blood and platelets together on the same day = LEGO, in Eric's mind, since it is such a long day. Unfortunately, our amazing Child Life Specialist is not here this week! She is so lovely and giving and bends over backwards for these kids, so I guess we will allow her to take vacation, as if it were up to us. I ended up at the gift shop buying a Lego set. It is not very big, but it is a 3 in 1 so Eric can build all 3 different characters to keep him occupied.  

Eric went to school Wednesday and Thursday, including a playdate on Wednesday and playing outside with a neighbour friend on Thursday. It is nice to see the red blood cell transfusion give him the energy to do these things. It is amazing, but also sometimes shocking to see how he doesn't let his disease limit him. On Thursday when he came home from school he said he was going to go rollerblading. ROLLERBLADING! The kid has no platelets and hasn't been rollerblading in a couple years. Luckily we couldn't find his rollerblades and he settled for his scooter instead. I was happy with this substitute but not much less concerned when he went ripping by the house at a million kilometers an hour. 

Friday we headed back to the hospital for another platelet transfusion. Traffic was quite a bit faster that we had anticipated - yay! - and we arrived a little early. Miraculously, the platelets arrived at the clinic just as his nurse finished his port access. Then his Nurse Practitioner arrived for an exam just as the platelets finished. We were out of there in less than 2 hours, which is a new record for a visit that involved a transfusion. We were out so fast that we only got partial bloodwork results. His hemoglobin was up to 104 after his transfusion, but we didn't get his platelet results. When they're super low the lab takes extra time to review them manually. We joke about them counting each individual platelet, and one nurse asked us if we name them. Oncology moms tend to have a bit of a dark sense of humour; I guess its the only way to get through it. 

Finally, and I was a little afraid to say anything before now lest I jinx it, but Chuck and the kids have gone to the Sunshine Coast for the weekend to visit Granny, while Millie and I stay HOME ALONE! I am pretty excited about it! 

Eric finished the current round of treatment on Monday and we are back to clinic on Wednesday. 

All the Lego built this week:

Weekly Check Up Monday, Sept 15 and Friday, Sept 19

We're slowly starting to get back into the school routine. Eric is still doing swimming lessons on Sundays, and has also been doing make up classes on Mondays the last few weeks. In Shark 2 he is just swimming, swimming, swimming for 30 min straight. It is definitely improving his endurance! Joel started Cross Country this week. It is with Coquitlam Cheetahs who he does track and field with in the spring, but he has never done cross country before. I picked him up after his first practice and asked how it was. He said just the warm up was 2kms! 

I booked Eric's clinic appointments for the whole month of September a couple weeks ago. Eric is planning to go to school Monday - Thursday, so his Friday appointments can be anytime, but he asked if his other appointments could be at 1pm so that he could go to school in the morning. 

Unfortunately Sunday night he had a bleeding nose at 10pm and it didn't stop until a little after 11pm so he didn't get much sleep Sunday night and was not up for school Monday morning. He rested on the couch all morning and we headed into the hospital at noon for his 1pm appointment. He was accessed by 1:20 and then nothing. I went looking for his nurse and found her in the hall and she said the platelets were on their way, walking up to us! However, when we were still waiting 45 minutes later I went looking for her again to see if the Porter got lost! They did show up 5 or 10 min later, along with Eric's Nurse Practitioner, so she said she'd come back later, but our nurse ran the platelets fast and our NP didn't make it back in time. We are there so frequently that if we don't have any concerns, we just leave without an exam because we know we'll be back again in a few days. Of course the team supports this also. I think we were out of there around 3:45, but traffic wasn't nearly as bad as it could have been for rush hour. 

I'd been following the Cops for Cancer - Tour de Coast on social media all week knowing that they were coming to us on Thursday. Finally the day arrived and we were so excited!

Eric requested a drive by his school and the Tour was able to accommodate that. Eric's principal put the event in the school newsletter and the school raised over $1500!!! The classes went outside and lined the street to cheer on the riders and get high 5s. They had such a good time that they also cheered random vehicles that came down the street after the tour. Unfortunately the video is too big to upload here but I know many of you saw it on my social media. We are so grateful for the support of the school community over the past 3 years. They have been so wonderful to us through every step of this journey 🩷

Following the drive by, we signed Eric out of school and raced down to Thrifty Foods in Port Moody to meet the riders. We had lunch with them and then toured with them for the rest of the afternoon. We were in a community policing vehicle without the cage in the back for bad guys, but Eric still got the front seat while Chuck and I were relegated to the back seat. Eric got to use the radio to tell the tour when we were rolling and was even given a radio call sign of Coyote. He was also responsible for giving an X minute warning to all the riders to get ready before leaving a tour stop. We all had such an amazing time and they made Eric feel so special. 

They invite Honourary Families to the Cops for Cancer events because the riders enjoy connecting with the kids they are supporting. Though, I don't think they realize how much it also means to us to connect with these incredible human beings who are putting themselves through this grueling ride completely selflessly. I tried to express to them what it meant to us, but I just don't think I have the words. We see directly the impact they have. Not just through getting to attend Camp Goodtimes, which is awesome, and I am so grateful for Eric to have the opportunity to attend camp like a "normal" kid. But also because in the 2 years since Eric's BMT started failing, we've seen and benefited from the advances in research. It isn't coming fast enough and there isn't enough of it, which is why we need to continue to raise awareness and funds, but at least we can see it and that gives us hope.  

On the note of research, Eric's doctor is still waiting on Health Canada approval for the new drug that he wants to try. The trial that occurred in Toronto was not for Eric's particular brand of cancer, so he's having to jump through some additional hoops, even though it is related and is one of the conditions listed (on the FDA approval, maybe; I am not 100% clear on that.) 

In the meantime, Eric is on Day 20/28 of this round of treatment, and it's giving his blood counts a beating. Luckily Eric is feeling pretty good. He is tired of course, but has been going to school fairly consistently which is impressive. I am not sure any of us would be merrily going to work. We were back in the clinic on Friday for another platelet transfusion and his white blood cells and neutrophils are still very low to non-existent. Additionally, his hemoglobin was down to 85 so we're planning for both a blood and platelet transfusion on his next visit. 

Eric's visits next week are scheduled for Tuesday and Friday, in order to accommodate the long weekend we are creating. Since the kids don't have school on Tuesday the 30th for National Truth and Reconciliation Day, we decided to take them out of school on Monday as well and go to Halfmoon Bay for the weekend. As a result, Eric won't be able to go to clinic on that Monday, but it is probably for the best as I expect clinic will be a gong show since they are also closed on Tuesday. You wouldn't believe what it takes to plan for an extra day away. I spent quite awhile trying to figure out, if you go here then this is the impact on clinic and if you go here, then this is the impact. No matter what I tried, it resulted in an extra visit for us. I guess the extra planning and extra clinic visit is the trade off for trying to give Eric, and the rest of the family, some adventures and activities and trying to live as "normal" of a life as we can.  

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 🤞