Weekly Check Ups Tuesday, June 10 and Friday, June 13

Eric and I had a great visit to Prince George to see Grandma, Uncle Jon, Auntie Becky and most importantly, Lily! 

Chuck and Joel had a boys weekend at home. Eric and I got back to town Monday afternoon, just in time to celebrate Chuck's birthday on Monday evening. 

On Tuesday morning, Eric got a ride to school in a police car courtesy of Cops for Cancer. Cops for Cancer raises money for pediatric cancer research and to fund Camp Goodtimes, a medically supervised camp for kids with cancer, their siblings and families. Their big fundraiser is Tour de Coast (or Tour de Valley, Tour de Rock, Tour de North, depending on where you live) which will take place in September. Currently the participants are training and fundraising and they enjoy meeting some of the kids and families that they are supporting with their efforts. I think Constable Neil enjoyed it almost as much as Eric! 

With Eric's busy social calendar, it was difficult to fit clinic in this week, but luckily they are always so accommodating. Eric ended up going to school just until recess on Tuesday after arriving in the police car. I picked him up and took him to clinic where he had his port accessed, bloodwork and a platelet transfusion. Annoyingly, his nose did bleed on and off throughout the weekend in PG, but his platelets weren't TOO low, for him. 

Eric had to load up on platelets on Tuesday because his class had a field trip to the new Mundy Park outdoor pool on Wednesday. 

The class walked to the pool, but Eric caught a ride with Kim, who also took the picture - thanks Kim! He played and played at the pool and then walked back to the school (since it was downhill, he said.) I drove up to the school on Wednesday to pick Eric up thinking he'd be tired from the field trip. I parked on the street and went to the front of the school to get him. Walking back to the car with Eric, he stopped and pulled the door handle of a white car. I said oh sweetie, that's not our car and we kept walking. A few steps later I stopped and said OMG that was our car! 🤦 So just in case you are wondering how my executive functioning is, the answer is poor! I told Eric I lost my marbles. He said he couldn't lose his because they were in a jar in his closet. However, when I asked to borrow them, he refused! 

Eric did also go to school on Thursday and even had a couple of friends over afterschool. Having just started a new round of treatment last week, I really didn't expect Eric to be feeling up to all these activities this week, but looking forward to the ride in the police car and swimming helped him rally I guess. 

Eric's nose didn't bleed again after the transfusion Tuesday, until Friday morning. Luckily he did have an appointment at the clinic scheduled for Friday. Upon arrival at the hospital, his Nurse Practitioner asked if he wanted an IV dose of Tranexamic Acid for the bleeding, but I declined since his nose had stopped bleeding. While he was getting accessed, it started again; unfortunately, since he was lying on his back, it also caused him to gag. We were so lucky to have 2 nurses in the room who managed to simultaneously slap the dressing on to protect his port access and get him sitting up (while his mother also gagged and was otherwise quite useless.) This is approximately when I learned that it was Friday the 13th, and it felt like it at the clinic. It seemed a bit chaotic, both in our room, and in the clinic in general. The platelets had been preordered, but with the continued bleeding, the team wanted to get the Tranexamic Acid in first. As it ended and just before the platelets started, Eric's bloodwork came back and his hemoglobin had dropped to 77 so he would need blood as well. Luckily, our nurse drew the blood for the group and screen (to confirm blood type) right then, so when the platelets finished, the blood was ready to go. This was lovely since last time Eric needed blood we had a one hour delay between the platelets ending and the blood starting. It was a long day, but after the nose bleed, everything went smoothly and as quickly as it could. Eric also had time to finish the project he'd been working on for Kristina's playroom, but I don't have a photo because when he finished, he just wanted it out of his room! It wasn't super well designed and a few parts were top heavy so they kept falling over. 

I can't believe there is only 1.5 weeks left of school. I've spent some time talking to the team about summer and looking over our summer calendar and it's proving to be a little challenging. We had such a great summer of adventures last year and I'd love to be able to create amazing memories again this year. However, I have to remember we are not in the same place we were in last year. Eric's energy level, fatigue and nausea is up and down, and, critically, he really does need platelet transfusions every 5 days. It's making it difficult to plan for even a week away. So I will keep noodling on that, and in the meantime, Eric's next clinic visit is scheduled for Wednesday next week. 

Monday, June 2 through Friday, June 6

Eric started a new round of treatment Monday so we were at clinic everyday this week, but first, we took a long weekend camping(-ish) and had a great time! 

We were offered 2 nights camping in a cabin at Revelstoke RV & Cabin Resort by Starlight Children's Foundation. We decided to take a couple extra days and stay over in Kamloops on the way there and the way back. We left Thursday afternoon and headed to the Coast Hotel in Kamloops, which I booked for its indoor pool in an atrium sort of thing and hoped to have a room overlooking the pool. Unfortunately, since we brought the dog, we didn't get one of those rooms, but the pool was still pretty great and came with a giant inflated soccer ball that the kids enjoyed playing with. 

They did get immediately into the pool, even though we didn't arrive until after 8pm. Back to the pool again in the morning and then hit the road to Revelstoke. We arrived in the afternoon and settle into our "rustic" cabin and explored the site. We enjoyed the campfires, so many marshmallows, the tetherball and basketball at the playground, the outdoor movie theatre and the goats. All of that and the kids' favourite part was the camp store where we were gifted a credit that they plowed through buying ice cream, candy, gum, pop and more ice cream. While we were there, we visited the Revelstoke Dam. I didn't even know it was there and its HUGE - bigger than the Statue of Liberty and the Great Pyramid of Giza. There were a lot of dam(n) jokes all day long. 

On Sunday, after a pancake breakfast hosted by the Revelstoke RV & Cabin Resort, we headed back on the road toward Kamloops, but stopped to see the Martha Creek Falls, which is apparently a bit of a hidden gem. They can't be seen from the road, but are just off it and spectacular. 

From there we headed to the 3 Valley Gap Ghost Town. The reviews are decent, but if you've been to Barkerville, it's probably not worth the visit. Though they do have an antique car museum which was pretty cool and a rail car museum that Chuck really enjoyed, but Eric and I found claustrophobic. Finally we made it back to Kamloops, this time staying at the Best Western Premier Aberdeen for the waterslide. Of course, the kids headed straight for the pool. They enjoyed the waterslide, but it freaked me out. It was completely black inside which I hate. We had the whole pool, waterslide and hot tub to ourselves! 

Last week Eric's doctor threw us a bit of a curve ball (but I knew it was coming) wanting to start another round of treatment. We decided that we would still stay Sunday night in Kamloops, but come back early enough on Monday to make it to clinic in the afternoon. In the meantime, our Nurse Clinician checked with clinic and the Oncology pharmacy to find out what the latest was that we could come in. We agreed on a 3pm appointment. I wanted to leave Kamloops by 10:30am to give us a bit of a buffer, but we managed to leave a few minutes earlier than that and, with an uneventful drive, got to our house in exactly 3 hours. This gave Eric and I a few extra minutes before we had to leave for clinic. I laid down for 20 minutes and then packed a snack bag and we headed out. 

Monday, June 2, Day 1/5:

Nice and easy afternoon drive to the hospital. Clinic wasn't busy so it didn't take long to do Eric's access and bloodwork, followed by IV Ondansetron (anti-nauseant) and then the IV chemo only runs for 10 minutes. His Nurse Practitioner came by to let us know the results of his bloodwork, which were all good (for Eric) and do a quick exam. We were out in only about 1.5 hours and into rush hour traffic home. Of course, we knew this was the trade off for staying the night in Kamloops, so we managed it; some of us might have fallen asleep a little (not me!) On Monday, Eric also started Day 1/28 of the oral treatment. 

Tuesday, June 3, Day 2/5:

We had a busy day planned for Tuesday; back to clinic for another dose of IV chemo, plus platelets, plus an appointment at the Endocrinology Clinic. Upon arrival, Eric's Nurse Practitioner suggested that maybe Eric didn't need platelets since his count yesterday was 19. Not high by any stretch, but without active bleeding, okay for Eric. However, I wanted Eric to have the transfusion because I wanted him to get back to the regular Monday/Friday/Wednesday schedule and if he didn't get them Tuesday, he would end up getting them Wednesday and then we'd have to be back for Monday/Friday next week after being in for 5 days this week... anyhow, there was logic behind it. Also, because we had planned the clinic appointment around the Endo appointment so, if we didn't get them, we'd just be sitting around for 2 hours waiting for the Endocrine appointment, and then sitting around the following day while he got platelets. We definitely can't accuse me of underthinking any of this! So his NP agreed it made sense and ordered the platelets. His nurse was amazing to get in the platelets, Ondans and chemo in the remaining 2 hours before the Endo appointment. 

Endo was pretty uneventful. They like to follow Eric because he has adrenal insufficiency from the high dose steroids almost 2 years ago and because he takes a medication to compensate for that. They'd ideally like to wean him off it, but because of the continued treatment stressing his body, it is too hard to do right now. So basically, they weighed and measured him, asked me a bunch of questions and then we were able to leave. Back to rush hour traffic once again

Wednesday, June 4, Day 3/5:

It was a busy 6 days leading up to Wednesday, but I was excited for Wednesday. It should be a quick clinic trip and I can actually get caught up on life. Eric was super duper tired Tuesday night. It has been go, go, go, but also a side effect of both the IV and oral treatment is fatigue. On Wednesday morning I was completely blown away when Eric wasn't awake by 9am; he is the early riser in the house! I ended up having to wake him up about 9:15 so that we could leave the house at 10am. Clinic did go fairly quickly, as we had anticipated, and we were out in less than 2 hours. At home in the afternoon, Eric built a LEGO set that Kristina had gifted him the day before, while he continues to work on her project for the playroom. It was the Knight Bus from Harry Potter and very cool, but apparently also way too much purple! 

Thursday, June 5, Day 4/5:

Another quick and uneventful day at the hospital. Eric woke up at a reasonable time and I was able to squeeze in a dog walk before we left and some chores when we got home. 

Friday, June 6, Day 5/5: 

Today is an exciting day for 2 reasons! One, Eric gets his port de-accessed and can scratch under the dressing, and two, Eric and I are flying to Prince George to meet Lily! Lily is Grandma's new Bichon Frise puppy. She is 10 weeks old and only weighs 3 lbs. Eric chose her name and is actually even more excited to meet her than to get de-accessed. We are at clinic right now. Turns out this is a good place to update my blog, since I finished another book yesterday and it's a hard place to start a new one with all the interruptions. The IV Chemo is finished, we've seen the doctor and the platelets are almost done. We're actually going to be finished here even earlier than I anticipated, but our flight isn't until 6pm. Luckily Granny lives nearby! 

We're back to clinic on Tuesday next week, since Eric's class has a swimming field trip he really wants to go on. However, we're going to come in a little later on Tuesday because Eric is getting a ride to school in a police car courtesy of Cops for Cancer! Looks like another busy week ahead!

Weekly Check Up Monday, May 26 and Thursday, May 29 + Biopsy Results

What a busy week! Since we are taking an extra long weekend, we had to move Eric's Friday clinic visit to Thursday. So we were in Monday and Thursday, plus had to pack, and Eric actually went to school on Tuesday and Wednesday! He had a great time, but holy was he tired! 

Monday our clinic visit wasn't until 10am, so we left at 9am and thought traffic would be good, but nope! The visit was overall quite uneventful, since platelet transfusions have been the norm for some time now. However, we did try something new and a little scary. Eric is allergic to platelets, so he usually has an oral dose of Cetirizine (Reactine) and a whopping IV dose of hydrocortisone before he gets platelet transfusions. They also used to give him special platelets that were referred to as "washed" but changed to a different method called psoralen treated. At first those had to be specially requested, but now it is standard. So one of the doctors suggested that we try giving Eric Reactine at home before we leave the house and skip the pre-meds at the hospital. The idea was that with the Reactine on board for longer and with the special psoralen treated platelets, he was unlikely to have a reaction and we could shorten our visits. It worked! (Of course, our visit wasn't any shorter.) 

On Monday, Eric's oncologist had partial results from the biopsy. Apparently the long weekend really threw a wrench in things. The report indicates leukemia blasts are <5% That's the reported amount but practically are in the 1-2% range, which is the same as before. It also indicates that the dysplastic (bad) cells are 69% I'm not sure there's any world in which having 70% broken cells is a good thing, except maybe when that is down 20% from the last biopsy. His doctor said we can be cautiously optimistic that this is improvement, but he'd like to see this decrease paired with an increase in donor DNA, but he was still waiting on those results. 

As I said, Eric went to school on Tuesday and Wednesday. Wednesday it was almost 30 degrees and after school Eric went to a friend's house after school to play on the slip n'slide. As I was putting sunscreen on his bruised legs I thought (out loud) hmm maybe this isn't such a good idea, but Eric said "too bad, you already said yes!" So that was that. He had so much fun and when I said did you get any new bruises he said "yep" and then continued on whatever he was doing before I asked. But really, who could tell if he had new bruises; he is one big bruise! 

Thursday back to clinic, and what a trip it was. We ran into construction, ambulances and police; it was just one thing after another. As we were exiting the highway, I called our Nurse Clinician to let her know we were running quite late, more than 20 minutes. I figured by the time we parked and got into the clinic, we'd be a half hour late. She said she'd let the clinic know and also get the Nurse Practitioner to pre-order the platelets. This turned out to be the best thing ever. Between the platelets being ordered and no pre-meds (we gave Reactine at home again) the platelets were started right after his blood was drawn. It was going to be the fastest clinic visit we've had in 6 months! Was going to be... Eric's team walked into the room and I said this is amazing, we're going to be late more often, and they said, his hemoglobin is 75 and we've ordered blood. Sigh. 

They did now have the rest of the biopsy results and they're "interesting." Eric's donor DNA is 12% The doctor was looking for that to come up to about 30% in order to match the drop in dysplastic cells. Obviously, that didn't happen. The doctor drew me a picture to explain what he thinks might be happening. It's a bit complex, and somewhat rare, but essentially he thinks that missing 20% (69%+12% = 81%) might be Eric's own cells, but healthy. It's hard to say if that is good or bad. It would certainly be better if it was donor cells, but it is positive that it is not dysplastic cells. The concern with both donor cells and Eric's cells is that they may not live in harmony, causing GVHD (graft versus host disease). Oh and there is no way to test to see if those are in fact healthy Eric cells. Basically we just wait and see what happens next. 

In the meantime, Eric will start another round of the same treatment on Monday. We will drive into the clinic 5 days in a row for the IV treatment and at the same time he will start the 28 day oral treatment. 

It's Thursday at about 2:30 pm and the blood is just finishing up. This is how Eric walks around the hospital; notice the ipad perfectly balanced on the IV pole. 

I usually bring a book to read but I finished my book yesterday and thought maybe I'd write this up today instead of starting a new book, since we are away for the weekend and I wasn't planning on bringing my laptop. Getting blood today was an unexpected delay, but it also means Eric will be feeling his best for our trip. We've spent the day asking everyone who comes in our room what their favourite road trip song is and adding it to our playlist. We are looking forward to some fun family time and s'mores! We have 2 nights in a hotel and 2 nights in a rustic cabin. Wish us luck for the drive home and the drive out of town! 

Weekly Check Up Wednesday, May 21

We've had a fairly uneventful week, which is never a bad thing when you're dealing with a medical condition. We had a nice relaxing long weekend. Eric had a make up swimming lesson to use so we decided to schedule it for the long weekend when Eric was feeling good. He got to go swimming on Sunday and Monday. Monday was the start of survival week so Eric swam lengths with pjs over top of his bathing suit, took the pjs off in the deep end and then learned about rescue. Joel went to a movie with friends; they were dropped off and on their own, which is a first for him. 

Tuesday Eric actually went to school and had a blast. Since half the grade 4/5s were at Track Attack, the two classes joined together and had lots of outside, gym, and computer time. 

Wednesday we headed to clinic for 9am. Access, bloodwork, pre-meds, platelet transfusion, de-access and home. As quick and straight forward as that sounds, it was 3 and 3/4 hours. Eric built more of the space coaster set for the play room. It is a huge set, but he's getting closer to finished. Unfortunately, no biopsy results because of the long weekend. Eric's bloodwork on Wednesday was not great though, which has me pretty worried about the results. 

Thursday Eric went to school again and received a recognition at the monthly Recognition Assembly. He was recognized for his positive attitude. Nothing has ever been so fitting; this kid is unbelievably positive in the worst of circumstances. 

Friday both kids woke up with a headache and stayed home from school. So frustrating for me as I ran all the errands on Thursday and was looking forward to my free Friday. Also concerning because Eric gets headaches with low hemoglobin. His last transfusion was less than 2 weeks ago and he's been getting about one a month, but with the bad bloodwork on Wednesday and waiting for biopsy results still, I start to think the worst. Luckily I was able to chat with our Nurse Clinician and she reassured me that Eric's Oncologist thinks things look about the same as last time. He is responsible for the inpatient ward this week and hasn't had time to call to review the results, but is on all weekend so said he would call us over the weekend. Of course the kids both felt fine by mid-afternoon. We made pizza for dinner and watched The Wild Robot for Friday family pizza night. 

We are back to clinic Monday and Thursday next week, not Friday, since we're headed out of town for the weekend. 

Weekly Check Up Monday, May 12 and Friday, May 16

I think I've been procrastinating writing this update. Monday was a hard day for me. 

But first, last Sunday was Mother's Day. My sweet family surprised me with a hanging basket and a book and cinnamon buns. Later we went to Granny's to celebrate the May family birthdays - Granny, Auntie Jenny and me. Finally, we headed to Boston Pizza for Mother's Day dinner out. Eric enjoyed it so much that he asked if we could go back for his birthday, which isn't until July! Eric also finished his 28 day cycle of oral treatment on Sunday. 

So, Monday... it was my birthday and we had to go to clinic, but that was fine. Eric would get his platelets and we'd get home and still have the afternoon and evening. However, Eric's bloodwork came back and he needed blood. His hemoglobin was 78 so the doctor said we could probably wait until his Friday appointment, but he typically will get headaches under 80 and I didn't want either one of us to have to deal with that for a week. I try and manage expectations and had told Eric that this was a possibility, but I guess I forgot to tell myself that. My eyes started leaking as soon as they told me he needed blood. Between my expectations for the day, and the conversation with Eric's doctor last week about how he hasn't needed blood for over a month and maybe that's a good sign, I fell apart. I was chatting with the Child Life Specialist and saying that I've become such an expert at keeping it all together, all damned up, that it only takes the slightest nick for it to all come pouring out. I kept crying on and off the whole time we were at the hospital, and it was a long day. Luckily Eric is still working on the project he is building for the playroom, so that kept him entertained. 

When we changed from the short stay side to the infusion side of clinic, we didn't see a nurse for awhile. Oh, and the room we got moved to didn't even have a recliner! Eventually the nurse started the premeds, but then the platelets weren't ready right away, and then blood wasn't ready when the platelets finished. We were there for 7 hours, hit rush hour both ways, and didn't get home until about 5:20pm. A couple of wonderful friends had left a bottle of wine and some bubble bath at my door while we were out, and that was the start to a much better evening. I put the wine in the freezer, ordered sushi and laid down for 10 minutes. The evening was lovely: wine, sushi, gifts and a cake made with so much love, topped off with a bubble bath before bed. 

With Eric loaded up on all the blood products and having finished his cycle of treatment, I was hopeful he would go to school during the week. However, on Tuesday, Eric and I both needed a day to recover. We both spent the day in our pajamas, which is normal for Eric, but I got a solid 36 pajama hours in and it was amazing. On Wednesday I had hoped Eric would go to school, but he had a big sleep in and then a bleeding nose and just wasn't feeling it. On Thursday he was a bit more motivated to get to school and was able to spend the whole day. It's the first time he's been to school in a month maybe. 

On Friday we were back to clinic for a scheduled bone marrow biopsy, so we had an early appointment. After the platelet disaster surrounding the last biopsy, I had asked the doctor to pre-order the platelets so the transfusion could be done in advance of the biopsy. Eric, as always, just wanted to know how many people were on the list. We were initially told 6, but turns out 2 people dropped off and I think Eric ended up third. His platelets were actually just finishing as we walked into the procedure room. When Eric woke up he had his pb & j sandwich and a chocolate milk, followed by all the rest of the food that I had packed. Eric likes to chill a bit while the anesthesia wears off. About an hour after he woke up, they kicked us out, nicely, but they needed the room. I was pretty happy about it because I didn't have to convince Eric that it was time to go and we ended up home before 2pm. 

We are now waiting for the biopsy results, along with the split chimerism results from the previous week. Next appointment is Wednesday and in the meantime, we will enjoy the long weekend! 

Weekly Check Up Wednesday, May 7

We had a great time at the Balding for Dollars fundraising event on Saturday. Eric held a snake and petted a turtle, won a stuffy and some candy, and ate 4 sno-cones. I won a lovely basket with wine and snacks in it; Eric immediately claimed the sweet and salty popcorn. I told him he had to share his popcorn and I would share my wine. Apparently, I am not funny 🤷  

Sunday the kids both went out to a birthday party where they watched the Minecraft movie. It was nice to have a few hours kid free! 

Eric didn't want to go to school Monday. Apparently, Balding for Dollars and a movie was a busy weekend and he was tired. He planned to go to school Tuesday, but then didn't sleep well Monday night, so didn't go Tuesday either. He doesn't seem to be feeling nauseous at all, which is great, but the treatment does make him quite tired. 

Wednesday we headed into clinic for Eric's check up. We didn't have to leave until 9am, but traffic was still brutal and we ended up a few minutes late. Appointment was same old: port access, bloodwork, wait, platelets ordered, wait, pre-meds, wait, platelets, home! Though, Kristina from Child Life had purchased a roller coaster toy that she thought would be fun for the play room and it turned out that it actually had to be built, similar to Lego. She enlisted Eric to build it for her and told him she would reward him for his efforts with a Lego set. He was more than happy to help! The set is pretty big, over 1000 pieces, so even though our appointment was over 4 hours, he didn't quite half finish it. Kristina put it on a big tray so he can keep building at his next appointment. 

We had a Fellow come in to do Eric's exam and then his Oncologist came in to chat with us a little. Chuck and I had a follow up Zoom call with his Oncologist at 5pm on Wednesday as well, so that we could have a more detailed conversation. These conversations are always hard, even though we decided literally nothing and didn't even learn much more than that. 

First, Eric's bloodwork continues to show a much higher than normal number of reticulocytes. This is an indication of functioning bone marrow, making these baby red blood cells. However, they are not (yet) materializing into an increased hemoglobin count, which is a bit confusing. They ordered some additional tests on the bloodwork and a urine sample to ensure nothing nefarious was happening, like his body attacking and breaking down his red blood cells, but everything was negative. Eric's doctor says that the increased hemoglobin may still materialize and reminds us that he hasn't had a blood transfusion in over a month, so we are seeing some stability, even if it is at a low number. With all the caveats, his doctor says this might possibly maybe be a positive sign. 

At the beginning of this cycle, I had mentioned another treatment that we had planned to add in. This was called a Donor Leukocyte Infusion (or DLI) and basically is a "top up" of cells from the original donor. However, in discussion with Eric's Oncologist we've determined that doesn't make sense at this time. It has a relatively low success rate, especially for someone who has all their donor cells in the T Cell lineage, which Eric did when we last did the split chimerism test back in January. I'm always willing to give things a try, even with a low success rate; however in this case, there is a fairly large chance of a negative outcome. The DLI could spark GVHD (graft versus host disease) in any of Eric's organs and especially in his lungs, where he had it previously. We would then have to treat that, which complicates matters, and there's the potential that treatment would not be successful. Another bout of GVHD would also limit our ability to engage in other potential treatment options down the road. All this to say, at this time, this is not the right option for Eric. 

Eric's doctor ordered a split chimerism blood test on Wednesday. Between that and the results of the bone marrow biopsy that will come at the end of this cycle, we will be able to decide on next steps. I believe that if things stay the same or get better, we will repeat another cycle of IV and oral treatment. If things are worse, either lower donor cells or increased leukemia blasts, we may be forced into a more aggressive treatment. 

Eric finishes this round of oral treatment on Sunday and has appointments Monday and Friday next week. Friday will be a bone marrow biopsy. 

Weekly Check Up Monday April 28 and Friday May 2

Another Monday morning clinic appointment to start the week! Eric's hemoglobin was low last week at 83 and he was a bit lethargic through the weekend, so we planned for a long day at clinic for both platelet and blood transfusions. I packed the big food bag, though Eric hasn't been eating much so it was mostly just fruit and cheese. We knew that the Child Life Specialist who feeds Eric's LEGO addiction was going to be on vacation, so we brought in our own LEGO set. Following Eric's last hospitalization, he was gifted quite a few LEGO sets from all of you lovely people. I am holding on to them for his next inpatient stay because he goes through them so fast as an inpatient, but I did let Eric pick one to take on Monday. 

So we were planning for a long day and in the evening Eric had swimming lessons and Joel had track and somehow I had to fit in voting. We were leaving the house at 8:30 and I thought maybe I'll just vote on the way and we'll be late to clinic and whatever because when will I have a chance otherwise. Chuck went a few minutes before me and was able to text me that it wasn't busy so I did decide to stop on the way. Turns out there was only one person in line and it was Chuck, so he let me go ahead of him 🤣 I was in and out in the blink of an eye and back on the road to clinic. And then, traffic was great and we actually got to clinic early! 

Eric had his port accessed and blood work drawn and then we waited, and waited, for the results. His platelets were 9 so he needed a platelet transfusion. However, his hemoglobin was 85, which was unexpected. It's not much of an increase, but we had expected it to fall under 80. I suggested to his Nurse Clinician that we go ahead with the red blood cell transfusion anyhow, if it was just a matter of having a long day at our next appointment Friday, instead of Monday. Our Nurse Clinician went to discuss with our Nurse Practitioner who requested a reticulocyte count. Reticulocytes are immature red blood cells. It turns out that his reticulocyte count is pretty high, so his Nurse Practitioner thinks it is possible his red blood cells will recover on their own without needing a transfusion. I was happy to not have the transfusion Monday and be able to go home earlier, with the possibility that Eric may not need one on Friday either; though I will believe it when I see it. 

Meanwhile, we were waiting for the platelets to arrive, and waiting and waiting. It was nice to have the additional 2 hours that a blood transfusion would have taken, but we were still there 4 hours, just under 6 hours round trip. Also, Eric decided that he was actually going to eat for the first time in a couple weeks, so he plowed through all the food that I brought plus the seaweed, apple sauce and Fruit by the Foot snacks that were available at clinic, and I still had to go to Starbucks and get him a grilled cheese and a chocolate milk. 

Once we were home, Eric had a couple hours to chill before heading out to swimming lessons where he graduated from Turtle 2 to Shark 1!!! (These are the British Swim School levels.) This kid amazes me everyday. Imagine having a hemoglobin count of 85 and not only getting out of bed, but enthusiastically attending swimming lessons and then excelling at it also. All that after spending the day at the hospital. Me and my hemoglobin of 145 had a nap after the hospital day. 

I had told Eric that he was free to go to school Tuesday and Wednesday. However, Tuesday morning Joel woke up stuffy and was staying home, so then Eric wanted to stay home too. He was happy to go to school Wednesday morning, but not too early; he's developed his mom's love of slow morning on the couch, oops! So he did go Wednesday, but arrived late and left early. He's not feeling too badly, nausea-wise, but he is tired, and out of practice attending full days of school. 

On Thursday, Eric's class had a field trip to UBC and they were taking a bus there. It sounded fun, but Coquitlam to UBC is pretty far and I was concerned about him feeling poorly and being stuck there. Eric and I discussed and elected not to attend the field trip. Thursday morning I surprised Eric with a trip to the pool! He was SO HAPPY! I don't let him go to the public pool due to being immune suppressed, but I figured it wouldn't be too busy mid week during the day and I called in advance to make sure they didn't have any school groups in. We stayed for more than 2 hours!!! Eric jumped off the diving board a bunch of times, and made me go a few too! We swam under water, did summersaults and hand stands, the lazy river, and tried to sit on a frog mat without falling. We raced until Eric realized that just by virtue of being taller than him I am much faster. There was also a fire alarm and the pool was evacuated, but luckily, they determined it was a false alarm before we made it out to the parking lot in our bathing suits. Three fire trucks came and turned off the alarm, thankfully; it was loud so we were floating with our ears under the water waiting for it to be turned off. All in all, I think it was a pretty successful substitute field trip. Though I am not sure Eric got off the couch again that day; he was pretty tired after. 

Friday we headed back to clinic for a 9am appointment. Eric was super annoyed that we had to leave the house at 8am, interfering with his slow morning on the couch. Traffic was surprisingly good for that time; got to love Friday traffic! We got our room, Eric's port was accessed and blood drawn. Then we waited, and waited. It took quite awhile to get the results, but no surprise that he needed platelets. While his pre-meds were running, to prevent an allergic reaction to the platelets, his doctor and Nurse Clinician came in to review the numbers and do an exam. His hemoglobin was 84, so those reticulocytes from Monday haven't materialized into anything significant, though they are managing to hold his count relatively even. over the last couple weeks his hemoglobin was 83, 85, and then 84. Eric also hasn't had a red blood cell transfusion since April 2, so a whole month. We didn't need to do a transfusion, but could elect to have one in order to give Eric a little more energy. However, we chose not to. We didn't want to stay at the hospital all day, and Eric is doing okay. He does have plans for the weekend but nothing too strenuous. Also, we know we're back in a few days for another check. Eric's doctor was going to get the reticulocyte count again to see if that was just a blip on Monday or if the count is still high. However, we didn't have that number when we left. With all the waiting, it ended up being a 4 hour appointment, even though the platelet transfusion only takes an hour and another 30 minutes for the pre-meds. Though with the early appointment, we still got home at a very reasonable time. 

Today, Saturday, we're headed out to the Balding for Dollars main event on the grounds of Children's Hospital. No one in the family will be balding this year, but it's a great family event with face painting, mascots, a magician, and, what Eric is most excited about, sno cones!