Treatment Tuesday, October 14 - Saturday, October 18

We had a lovely, lazy Thanksgiving weekend. The weather was so beautiful! We went to Granny's for turkey dinner and Eric made us set up the Halloween decorations. He loves Halloween! Unfortunately, the crows have made a mess of our lawn, but Eric thinks it adds to the decorations. 

 

Day 1/5: On Tuesday, Eric's appointment wasn't until noon, making for a quicker drive. The first day takes a tad longer since he has to be accessed first, but we were done in under 2 hours and back home before 3pm. Since he got topped up with all the things on Friday, his counts were pretty good. Platelets were falling but okay to wait until Wednesday, as we had planned. Walking down the hall on the way into the clinic, Eric saw a man standing on the roof; the man put his arm out and a hawk flew over and landed on his arm. These are the same birds from  the Birds in Motion demonstration at Grouse Mountain. I think they are at the hospital for pest control. 

Day 2/5: Eric's appointment was slightly earlier on Wednesday since we had planned a platelet transfusion as well. It was at 10:30, so still late enough that traffic should have been good, but apparently there is now construction on Grandview, so it was backed all the way up to the highway exit and took us over an hour to get to the hospital. UGH! Platelets had continued to fall and were down to only 11, so was good timing on the platelet transfusion. Plus Eric was getting a little bleeding from his gums with just regular brushing the last couple days. His Oncologist stopped by for a check up and mentioned that he only had the preliminary report from the biopsy, but it is looking like about 10% leukemia blasts. Clearly not great, but starting treatment this week should help to bring them back down again. It is another reminder that we're going to have to do something different, soon. His doctor said everything is chugging along with setting up the clinical trial and he's hoping it will be ready by the end of this cycle. We are still waiting on the chimerism (DNA) results. 

After the hospital visit, Chuck and I went to donate blood at a pop up blood donation clinic in the tri-cities. It took less than an hour, door to door. You can find an hour to save lives! I already have my next appointment booked for January if anyone wants to join me :)

Day 3/5: Thursday we were hoping for a quick visit and we got it!! Traffic was great both ways and we were at the clinic for just an hour. Since Eric was already accessed, and had platelets the previous day, it should just be the IV anti-nauseant and IV chemo, and both are quick infusions. We'd been there 20 minutes and hadn't seen our nurse yet. When we did see her she was holding a bag of platelets for another patient which I figured was bad news, since the nurses have to sit in the room for the first 15 minutes of blood product transfusions, in case of reaction. However, she was able to send someone else to get Eric started and as soon as the anti-nauseant was done, she walked in with the chemo. It was great timing and we were both happy to head out and get back home. It's the halfway point of the treatment and we're both exhausted. 

Day 4/5: We were hoping for another quick day for Friday. Sadly, the clinic was super busy and we ended up waiting 30 minutes just to get a room. Once our nurse arrived, everything went fairly smoothly, except that Eric's bloodwork wasn't back yet. Even though Eric just had a platelet transfusion on Wednesday, the double whammy of IV and oral chemo will drop his counts. As a result, his Nurse Clinician wanted his counts back before we left, to ensure he didn't need another transfusion. She was able to call the lab and ask if they had a preliminary number and that was high enough that we were allowed to leave. We were at clinic for almost 2 hours. Eric wanted to get home to play video games, but he is doing pretty well. On the other hand, I was so tired that I felt like I was falling asleep on the way to clinic Friday, let alone the way home! 

In the afternoon the Constable that drove Eric to school and was on the Tour de Coast ride, stopped by our house. He brought Eric "beads." The beads are from Camp Goodtimes. Everyone wears their name beads and then you collect and add beads each year for the different camps and activities. This is something the riders do as well. They made Eric beads with his radio call sign Coyote.  

Day 5/5: Clinic isn't open on Saturday so we headed into the inpatient ward. Unfortunately, they were super busy also. They had no rooms available and were waiting for someone to be discharged so the room could be cleaned so that we could use it. We had to wait in the Family Lounge for about 15 min, but then our nurse had the anti nauseant ready to go when we got into the room. We had to wait for a bit for the chemo from pharmacy. Once it was finished, Eric was able to have his port de-accessed and he was so happy. 

Home now and only one day off. We're back to clinic Monday and Friday next week for Eric's regular check ups and platelet transfusions. 

Bone Marrow Biopsy Friday, October 10

We had such a wonderful time at the hockey game on Thursday night. This smile says it all

It's from the Jumbotron. They played a few pictures of Eric that I sent in and spoke a little about his journey and then cut to Eric in the arena and around the arena with everyone cheering and the players banging their sticks on the boards and back to Eric. Before the game, they also took a couple pics of Eric and the family to put on their social media. 

After all that was over, we got to just sit and enjoy the game, and it was a great game!!! Canucks won 5-1! 

Unfortunately, Eric didn't get to bed until 11:30 that night and I had to wake him up at 7am on Friday morning so we could leave for the hospital at 7:30am. He had initially had his biopsy scheduled for Friday and then his Nurse Clinician called and said they had a couple urgent kiddos they had to fit in so they were going to bump us to Tuesday. We were scheduled to be there Tuesday anyhow, so I said sure. Then she called Thursday and said someone had dropped off the list so we could add Eric back on Friday. I told her that I was just worried about how long the list was and if Eric would have to go last because of his cold the previous week. She checked and got back to me letting me know that Eric was off precautions from the previous cold so wouldn't have to go last and also that there were 5 people on Friday and 5 people on Tuesday, so we said we'd go ahead with Friday. I was worried there might be 8 people on the list because I know that is the maximum number of procedures they will do in a day. However, I learned Friday that while 8 is the maximum number of procedures, 4 is the maximum number of bone marrow biopsies and the reason Eric was bumped. Also Friday morning we were thrilled to learn that 2 more people had fallen off the list, so it was only 3 people and one of them had a cold so Eric would be second! He was very happy. On biopsy days he is very focused on the list - how many people on the list, where am I at on the list - because he has to fast for the procedure. 

We arrived at the hospital at 8:30am, a bit short on sleep, but happy to know Eric was second on the list. He got accessed and his nurse called for his platelets. The team had pre-ordered them so he could get the platelets in before he gets poked with a giant needle for the biopsy. They arrived about 9:15 and we were betting if the platelets would finish first or if Eric would get called for procedure first. The platelets run for about an hour and Eric was hoping he'd get called for procedure first, but no such luck. I guessed it would be a toss up, but despite being second on the list, they had got a bit of a late start and the first kiddo didn't go in until 10am. Eric's platelets finished and he was called in about 10:30am. While we were waiting, his Nurse Clinician popped in to say that his hemoglobin had dropped, and while he was still okay where it was, his Oncologist has suggested giving him a blood transfusion so we didn't have to worry about him becoming symptomatic and having a miserable long weekend. So I agreed to that and they were able to do the group and screen and order the blood while he was in procedure. The procedure went smoothly though I marveled at the difference 12 hours makes - from a great time at the hockey game to recovering from sedation at the hospital. Despite being so organized in ordering the blood, it still took a long time for it to be ready and Eric was basically recovered from his sedation by the time it showed up. Luckily, Child Life had given him a large (1000 pc) LEGO set that morning, so he had something to kill the time since it takes 2+ hours to run the red blood cells. 

While the blood was running, Eric's entire team came by. They'd seen him on the Canucks social media and been sent photos of him on the big screen from another Oncologist that was at the game, so they wanted to ask Eric about his experience. Also, do his exam and chat about his bloodwork, of course. Unfortunately, the leukemia blasts circulating in Eric's blood are up. They're not high, but they are definitely there. His Oncologist said it makes sense since he's 2 weeks off treatment so it's good we're starting another round of treatment Tuesday to get them back in check. His platelets were also up a little, so his doctor says it shows that his marrow is making some healthy cells when it is not being suppressed by the chemo. It is a little hard for me to look at a platelet count of 22 (normal is 300ish) as a positive, especially when the blasts are also up from the lack of chemo suppressing them. I expect the biopsy results will also show an increase in blasts. His doctor is still not too worried because the blasts aren't showing a substantial increase and neither are his white blood cells, which would be an indication of the AML taking off. It isn't causing him to change the plan, at any rate. Eric starts another round of treatment Tuesday. It will be 5 days of IV chemo (Tuesday to Saturday) at the outpatient clinic as well as the 28 days of oral chemo starting at the same time. At least this gets us through Halloween with Eric feeling relatively well before we start the experimental treatment, hopefully in 5 or 6 weeks. 

Happy Turkey weekend to everyone!
🦃

Weekly Check Up Monday, Oct 6

Eric continues not to have any cold symptoms after his hospital visit last week, and no bleeding either! 

He had a check up at clinic today and another on Friday, but I wanted to update today since I've got a couple things to share. 

First, our clinic visit today. Eric's platelets were not preordered this time because when he was discharged on Wednesday his platelets were 66, so his NP said she wanted to see his bloodwork before she ordered them. I said that was fine, but that they'd all be dead. Platelets only last a couple of days and Eric's body has essentially zero ability to make new ones. As I had guessed, his platelet count was 8. Luckily red blood cells live a lot longer and Eric's hemoglobin is over 100. Also, exactly a week out from the end of the last cycle and his white blood cells have rebounded a little. They are nowhere near normal, but they're not nothing which is a win. 

Eric's Oncologist stopped by to chat with me today, along with his NP. We haven't seen his Onc in a couple weeks because Eric sees a different Oncologist when he is inpatient like last week and his Oncologist was responsible for the inpatient ward the previous week, so we didn't see him in clinic then either. However, the team had been keeping me up to date on the application to Health Canada - nothing to report! Today he did have an update though. He explained to me that the drug is not approved in Canada, so basically he needs Health Canada approval to bring it into the Country/use it. The drug has been approved in Europe and by the FDA in the US in both children and adults with AML (Acute Myeloid Leukemia) which is not Eric's original diagnosis, but it is related to his original diagnosis and is a secondary diagnosis that Eric has. Specifically, with a specific mutation causing the AML, which is also not the same mutation as Eric has. As a result, Health Canada wasn't super eager to give the go ahead just as is. However, they did reach out to the drug company to get additional information. The medication has been used, with some success, in conditions like Eric's, but there is not a lot of robust data yet. (Duh. Because there are very, very, very few kids on Eric's path.) The Company is willing to give us the drug (yay, that is one hurdle down!) Health Canada is also willing to give the go ahead, but for a clinical trial. His Oncologist says they just do a clinical trial of 1 participant, and they have done it before, but it requires a bunch more steps so will take some time (maybe a month) to organize. There will also be more approvals required to get it set up. 

In the meantime, Eric will have another bone marrow biopsy on Friday and start another round of treatment, more of the same, next week on Tuesday. 

Finally, the exciting news! Eric has been asked to be the Canucks for Kids Star of the Game for the Vancouver Canucks season opener versus Calgary on Thursday! I think it occurs during a commercial break, so those hoping to see it from home are probably out of luck, but I know it means a lot to Eric. He feels recognized and acknowledged for not getting to live like a "normal" kid and for all of the difficulties that he has to face. 

Stay tuned for pics of Eric as the Star of the Game and, in the meantime, here is a picture of Millie from her 4th birthday on Saturday. Saturday was also the 3 year anniversary of the start of this journey. The day that my/Eric's GP called to say his bloodwork was back and it looked like he had leukemia; she told me to pack an overnight bag and go directly to Children's Hospital. 

Hospital Day 3/3

They let us out Wednesday late afternoon - yay!! It was touch and go there for a bit. No additional cold symptoms or fever, but on Tuesday evening Eric had a bleeding nose. Only bleeding nose does not even come close to describing the situation. 

It started bleeding about 2 hours after the platelet transfusion and I joked that his body forgot to tell his nose that he'd just got platelets, but the joking stopped there. It was bleeding a fair bit and not stopping after about 30 minutes so he was given an oral dose of Tranexamic Acid. It did stop after that, for about 30 minutes, but then it started again. The blood was just pouring out. We went through the entire box of nice kleenex that we brought with us and multiple boxes of the scratchy hospital kleenex. It was coming out his other nostril and going down his throat which made him gag and ultimately vomit a couple times. Eric was understandably pretty upset, mostly from frustration that it was so uncomfortable and wouldn't stop. The Fellow ordered another unit of platelets and intranasal tranexamic acid, which is just TXA on a gauze shoved up his nose. We've been through these horrible nosebleeds before, post transplant, but they seemed to stabilize around the point of the intranasal TXA. Unfortunately, this time it did not work. The blood soaked the gauze almost immediately and started dripping off the end. The Fellow came in to see the amount of output and how much it was still bleeding and said there's nothing else we can do, we'll have to get ENT up here. Maybe 20 minutes later ENT arrived. He flushed 3 whole saline syringes up Eric's nose and "packed" it and removed a clot that was bothering Eric. Then he gave Eric a sucky thing like at the dentist to clean up his mouth, which made him so happy. The ENT process was quite unpleasant; at best it was uncomfortable, but parts of it really hurt. However, Eric was so relieved that the ENT made it better that he was actually happy. The second round of bleeding was 2 hours and we finally were able to order dinner at 8pm! 

Wednesday morning, Eric's platelets were up to 66! We haven't seen that in a year! Yay for 2 bags of platelets! Unfortunately, they don't last for too long and his body isn't making them, so he'll still need another transfusion next week. Also, after the massive bleed, his hemoglobin was way down and he needed a blood transfusion. The doctor on Wednesday ordered blood and said she was in favour of monitoring for the day and sending us home late afternoon if everything was good. However, half the team wanted to keep Eric another night after his "hemorrhage." She came back later in the afternoon with discharge papers and told us we could go home after the blood transfusion. We were able to leave at 5pm and got home at 6pm to enjoy a delicious dinner prepared and delivered by a lovely friend and neighbour. 

Following the nose bleed, they continued to give Eric IV TXA, and at home we have to give him oral TXA for another 24 hours. Luckily no additional bleeding and he continues to have no cold symptoms. However, his back and chest are quite sore from the awkward position he was in while his nose was bleeding. He's currently chilling on the couch on a heating pad and I think that is going to be our vibe for the whole day. We definitely need a hospital recovery day! 

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.