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!