Weekly Check Up Wednesday, April 23

What did we even do on the long weekend? It already feels so long ago... The Easter Bunny came Sunday morning and we went to Granny's for Easter lunch Sunday afternoon. Chuck spent the entire weekend fixing his muffler and I worked in the garden taking out a tree that was sick, sadly. The kids played on the trampoline and Eric finished up some Lego sets.

Eric elected not to go to school on Tuesday. He is feeling okay, but was worried about his low white blood cell count, not wanting to get sick. On Wednesday he had his check up at clinic. It was a gong show there after the long weekend. We were lucky to get right into a room, but unfortunately it was a room with an exam table and not a stretcher/cot. Eric was not impressed. We had hoped to just get his access done there and then move if he needed platelets, which of course we had assumed that he would need. Eric didn't even want the access on the uncomfortable exam table, but he didn't have a choice so we made it work. Just before his access, I let his Nurse Clinician know that he had petechiae on his skin, which is a sure fire sign that he has low platelets, even beyond the multiple bruises. So his doctor ordered the platelets without waiting for the blood test results. This meant that we got out in about 2.5 hours instead of 3.5 which was great. Though we never did get to move rooms. They were all full and families were waiting in the hallway for rooms to become available. Eric's Nurse Practitioner came in to do his exam. We saw his Oncologist a number of times but he was running all over the place. Luckily we love his whole team so are happy with whoever comes to do the exam. His Nurse Practitioner says he looks really good. Yeah he looks great on the outside, but could we fix the inside please?!?! I showed her the petechiae that I had noticed that morning on his wrist and collarbone and also showed her some red spots in his ears and asked what those were. Turns out they are petechiae as well. It is basically a cluster of small red spots. His legs are also even worse than the previous picture I shared, with some large bruises along with the small dots. In addition, he now has a number of bruises on his arms and a few on his back. It's pretty awful to look at but mostly they don't bother him. I guess maybe it's not the smartest idea to allow a kid with a low platelet count on the trampoline. But there are so many ways he doesn't get to be a "normal" kid that I can't take anything else away from him. 

We did get Eric's blood counts before we left and, surprise, surprise, his platelets were "less than 5." His hemoglobin is down to 83. For reference, I donated blood yesterday and they test your hemoglobin level beforehand to make sure you are safe to donate; my hemoglobin was 145. I told his Nurse Clinician and said "and I'm tired!" It is truly amazing the way kids adapt. With a hemoglobin in the low 80s, you probably couldn't get most adults out of bed. We will plan for a long day on Monday for Eric to receive both blood and platelet transfusions. 

Eric's oncologist always says the greatest impact on his counts from the IV chemo is 7 days after it finishes, so that is this Friday. Since it is a pro-d day, and Eric hasn't been to school the rest of this week, we figured he may as well skip today (Thursday) as well and just have a good rest and hope his counts recover a little and it's safer for him to be at school next week. Of course, he is still on the oral treatment; today is day 11 of 28. He continues to feel pretty well, though he isn't eating much, and is a little lethargic. We're back to clinic on Monday and Friday next week. 

Monday, April 14 through Friday, April 18

This week we are in clinic every day for Eric to receive IV treatment. At least we are able to do it as outpatient and at least its a beautiful week to be in the car. I asked for mid-day appointments since its a quick treatment and that way we won't have to fight traffic either way. 

Monday, Day 1 of 5:

Traffic was great and we ended up at the hospital quite early so decided to look for our own parking instead of valeting, even though it was mid-day. However, we got a spot in the first row! It's one of my favourite spots because it's closer to the building and it's tucked a little so people don't realize it's there. (Who has favourite parking spots at the hospital?!?!) As we headed into the building we learned that April is dental health month. There were balloons and a poster informing us. But then also a large table of very friendly people who waved us over and gave Eric a Minions toothbrush and some toothpaste and a shark sticker about brushing. They also had an enclosed area for a quick check up but we declined that. Next we headed upstairs and noticed the family lounge had the cutest cookies. We stopped in and got to meet Rachel of Mighty Warriors Foundation, an organization that she founded after noticing a lack of mental health support for caregivers. The cookies had been donated to the foundation by Canela Sweets, a home baker in Port Coquitlam. They were super cute and delicious! Eric shared with me ;) 

We went to check in and were still 10 minutes early. Unfortunately, there was no room available! We waited until about 12:15 before getting a room, and not a minute too soon; Eric was just starting to get whiny about waiting. He got his port accessed and was given IV anti-nauseant and then his IV chemo. It's a super short infusion - 20 min for the anti nauseant and only 10 min for the chemo, but there was a lot of waiting so we were there about 2 hours. His Nurse Practitioner and Nurse Clinician did stop by and give him a quick once over, since we were just there Friday. His bloodwork showed his platelets had held from the transfusion Friday. Platelet count was 35; not high enough to heal all his existing bruises, but high enough he didn't need a transfusion. Luckily we got out early enough that traffic was still reasonable. We were home around 3pm on a lovely day, but we don't really have anything planned for this week since attending the hospital everyday uses up a lot of our mental bandwidth each day. Eric didn't even go to swimming lessons since he will have his port accessed for the week. He is not looking forward to sleeping with it accessed, but its much nicer than having an access daily in a spot made tender from the previous day. 

Eric started his oral therapy this evening as well; day 1 of 28. 

Tuesday, Day 2 of 5:

Not quite as early this time, even with no toothbrushes or cookies to distract us on the way. Luckily this time there was a room available for us upon arrival. We got the first room on the unit which is adjacent to a patio with the cutest mama and baby bear statue. 

This should have been a very quick visit with no bloodwork, no check up by doctor or nurse practitioner, and since Eric was already accessed. Our nurse did get the anti nauseant started pretty quickly, but then she got busy with something else and we had to wait about a half hour for the chemo to start. Even with all that waiting, we were only about an hour and 20 minutes, which is much faster than our regular clinic visits these days, and we were home before 2:30pm. It was a fairly uneventful day, which is a good thing; though Eric's dinner (tacos) did make him feel a bit nauseous. 

Wednesday, Day 3 of 5: 

Eric's port site is getting itchy under his dressing and we still have 3 days left, eek! Eric asked for an Ondans (anti-nauseant) in the morning before going to the hospital, rather than having it by IV at the hospital. Since he had the anti-nauseant in the morning, he only needed the chemo infusion which is just 10 minutes, but we were there for 1.5 hours. Lots of waiting! The chemo does only have a one hour expiry so the pharmacy doesn't makes it until the nurse calls. Eric's platelets were down to 15; however, since we are back every day, we are able to wait until Thursday and have the platelets pre-ordered so it goes faster. 

After the hospital, Eric finished building the Hungarian Horntail Lego set that Kristina, Child Life Specialist, gave him at the hospital last Friday when he was getting platelets. It is a very cool set; its wings actually go up and down!

Thursday, Day 4 of 5:

Chuck was able to take Eric to clinic today so that I could go see the Renaissance Fair and Joel's project on Shakespeare at his school. Unfortunately, last day before the holiday and clinic was packed. They had to wait 30 min for a room and then ended up with a room with an exam table, not a cot, just so they could get started instead of waiting another 30 minutes. They did eventually get moved to a more comfortable room. Eric received his 4th dose of IV chemo plus the platelets that had been planned for the day before. It was a long day for them and they hit rush hour on the way home, but Eric came home in a great mood with the new Lego set that Kristina gave him! 

Eric's white blood cell count has been low for awhile, impairing his ability to fight infection, but steady. On Thursday his blood work showed a drop in white count and his Nurse Practitioner suggested laying low over the long weekend. Though she did tell Eric it was okay to go to White Spot for dinner on Friday like he had planned. 

Friday, Day 5 of 5:

Good Friday! The clinic is closed on holidays, so back on Monday when our week of appointments were scheduled, we were booked into the inpatient ward for a day visit. However, as the week went on, there were more and more people being booked over there and they didn't have enough room, so clinic ended up having to open on the holiday. They were open only 4 hours with a skeleton staff, but it was nice to have the consistency of clinic. We spend a lot more time at clinic than inpatient these days, and we know all the staff and they know Eric. Our appointment was at 10am after being at 11:30 or noon all week and Eric was not impressed. Of course with the holiday, traffic was great, and with so few people at clinic we were in and out in under an hour. We were only 2.5 hours door to door. It was amazing, but the best part was Eric had his port de-accessed after a week of having it accessed. He was so happy to scratch under the dressing and was more comfortable playing outside once we got home. Unfortunately, he did burn his ear lobes, even though he was only outside for 1.5 hours and had sunscreen on. Stupid meds! 

We did go to White Spot, like Eric had planned, to celebrate the end of the long week. 

Eric has been feeling fairly well all week, just with one morning dose of anti-nauseant. Fingers crossed that continues! Next appointment is Wednesday. 

Weekly Check Up Monday April 7 & Friday April 11 + Biopsy Results

Buckle up; its a long one! 

Trying to remember all the way back to last weekend...that was when we had that beautiful peek of summer on Saturday. What a beautiful day and so warm! I got out and weeded the garden and planted some sweet peas, carrots & lettuce. The kids got out on their bikes, both of them on new bikes this season due to their rapid growth. Joel got a new bike for Christmas and it's so big that I don't think I could even get on it. Eric is on to Joel's old bike but could grow another inch to be really comfortable on it, and it needs a serious tune up. 

Check up scheduled for Monday morning, what a way to start the week... As always, Eric needed platelets. Everyone reading this now knows that platelets are for clotting blood, so low platelets equals bleeding. I don't think I've shared as much, but it also means bruising (which is just bleeding under the skin). When we get into the hospital, they always ask about bruising and bleeding as an early indication of whether he may need platelets. Eric has basically been covered in bruises since December. He's always getting new ones and the old ones don't heal very quickly. However his Nurse Practitioner, who we saw Monday, lifted his pant legs to take a look and we were both surprised by how many more bruises he'd gained since last time I took a good look at his legs. This is a picture of his legs Monday afternoon before swimming. He doesn't even know how he gets these bruises. 

There are usually snacks available in clinic and often the snacks are chips. Sometimes the chips are Old Dutch and Eric will never eat them if they are Old Dutch. On Monday, he wanted some chips but there were only Old Dutch so his lovely nurse went to ask Child Life if they had a stash of other chips and he got some Lays Ketchup chips. His Nurse Practitioner, who is of similar vintage to me and remembers when Old Dutch chips came in a box with the 2 bags inside, was flabbergasted that it really made that much of a difference and that Eric would actually refuse to eat the Old Dutch ones. This random paragraph will become relevant shortly. 

Anyhow, Monday's appointment was relatively quick at 3.5 hours which seems to be about the fastest we can do with a platelet transfusion. Unfortunately, we didn't receive any of the results from the biopsy yet, not even preliminary results. Eric's next appointment was scheduled for Friday, but the team did say they would call me once they had the results. 

Eric went to swimming lessons Monday evening and they were, thankfully, vomit free, though this time I did give him an anti-nauseant before we left the house.

Eric's oncologist called Wednesday afternoon. He only had a verbal heads up about the results and not the written report. However, it appeared as if the abnormal cells were fairly similar to the last biopsy, which were in the 80% range. It is these abnormal cells that are preventing his body from making platelets, hence all the transfusions. On the positive side, it looked like the blasts (the bad leukemia cells) had come down to less than 5%. This puts us back into a similar position to January. 

Eric and I went into clinic on Friday for our regularly scheduled appointment. However, just as his nurse is about to access his port - all the supplies set up and ready to go, shirt off - she says "you put the cream on?" And Eric and I looked at each other in shock. We completely forgot to put Emla on his chest! And it didn't even occur to us until she was basically ready to stick the needle in. UGH! There was a presentation at Eric's school for the Grade 4/5 students about online safety that I had really wanted him to attend. So I dropped him off at school, came home to prep food for the hospital, picked him up and drove to the hospital. I guess with a different routine to our usual, we both completely forgot the Emla. His nurse put on Ametop instead of Emla because it works faster but we still had to wait 30 minutes before she could do the access. Unfortunately, Ametop doesn't work as well as Emla so it still hurt but Eric was amazing. He just sort of grimaced and said it pinched a lot more than usual. Since he was slow to get accessed, his Nurse Practitioner decided just to order platelets without waiting for results of blood test because his legs looked the same as Monday and after 4 months of this it was unlikely that he was going to have some miraculous rise in platelets since his last appointment. 

Later, his Nurse Practitioner and Nurse Clinician show up with a tray of chips in small cups and tell him they're going to do a chip taste test! Eric thought this was the best news he'd heard all week! They made him put a mask over his eyes as a blind fold and then gave him 2 cups of ketchup chips and he had to say which were Lays and which were Old Dutch and they did the same with All Dressed and Sour Cream and Onion. 

He got 2 out of 3 correct, only missing the All Dressed. However, he said he eats Ruffles All Dressed not Lays so he really didn't have a chance with that one. 🤣  Eric and his team had way too much fun with this activity, and also all enjoyed eating the chips after. 

Finally, just as the platelets were finishing, Eric's Oncologist came by, with his Nurse Practitioner and Nurse Clinician so we got the whole team. He came to review the biopsy results with me now that he had all of them. The hemopath report was just as he told me on the phone, with the additional comment that the T cells were active. T cells are responsible for fighting off things that affect the immune system (infection, cancer). Based on the previous split chimerism test, it appears Eric's donor cells are mostly (completely?) in the T cell line. So as far as I understand it, what this means is that Eric's donor cells are still trying to fight. In addition to the hemopath report, he also had the chimerism results, which show that the donor DNA is about 16% with Eric's DNA making up the rest. The last result the donor DNA was 21%. I don't love the decrease, but as long as he has donor DNA, we have options to stimulate it to fight off the bad cells. 

As before, Eric's doctor describes us as "stuck" or plateaued at this place. It's not a great place to be because it requires so much "maintenance," attending the hospital every 5ish days for platelets. Though, it is an okay place to be in that it is stable. Of course, this fine balance could tip (either way) at any time. For now, we've agreed to just do another round of the same treatment. This is because its been almost 3 weeks since he finished his last round of treatment and if we aren't doing anything, we risk the leukemia cells taking off. Additionally anything "new" that we wanted to try would require time and/or approvals to get set up. On Monday, Eric will start another 5 day cycle of IV Chemo (Azacitidine of 5-Aza) and another 28 day cycle of oral "therapy" (Venetoclax). This cycle he is able to do as outpatient, though we will have to drive to the hospital everyday for 5 days, including on Good Friday. He won't go to school next week, but after that will be able to if he is feeling up to it. The team and I have discussed something new to try for the next cycle, or perhaps later in this cycle if the stars align, but I will leave that for another time. 

For now, we're going to get outside and enjoy the sunshine this weekend!

  

Weekly Check Up & Biopsy Wednesday, April 2

Hello April! It's Eric's month on the calendar. 

Monday was back to school after Spring Break, except Eric didn't sleep well Sunday night and was too tired to go to school Monday. Joel went and Eric stayed home and I finished up my Spring Break chores/Spring purge everything from the house! Eric did go to swim class Monday evening and everything was great, until the class ended and Eric said he felt like he was going to throw up, and then vomited in the bushes. He finished his treatment a week ago and hasn't been feeling nauseous so hasn't been taking his anti nauseant, but maybe he needs it for swimming. No idea what is happening with this random vomiting. Then on Tuesday he planned to go to school, but his nose started bleeding in the morning and would not stop! Last time this happened, we were able to just move our clinic appointment forward a day, but since his appointment this week included a biopsy that he had to fast for, that wasn't an option. If we went to the clinic on Tuesday, we were still going to have to go back Wednesday. Luckily we had some medicine, tranexamic acid, that helps lessen bleeding. Eric took a dose orally (unhappily; they are huge tablets!) and I crushed some and put it on gauze and stuck it up his nose. It worked! His nose stopped bleeding and he got to go to school at about 9:30 and his nose didn't bleed again the rest of the day. What a start to the week, but sadly, vomiting and nose bleeds are two of the things that have become routine in our world. 

Since Eric is needing a platelet transfusion every 5ish days, I've been trying to schedule clinic Monday/Tuesday and Friday one week and then Wednesday the following week. At least that way every second week we only have to go to clinic once in the week! It's such a small thing, but so necessary. So this week, Eric was scheduled for Wednesday. Also, since it was just over a week since he finished the last cycle of treatment, he was scheduled for a Bone Marrow Biopsy. This was his 17th bone marrow biopsy since October 2022 when this all started. Initially, the nurse would feel his hips to determine the correct location to place the Emla (numbing cream) in advance of the procedure, but they no longer need to. You can see the location after this many biopsies. There is a permanent mark on his back about the size of a quarter. 

Due to the biopsy, we had an early appointment. It was 8:30am so we had to leave the house at 7:30am and I had to wake Eric up at 7am. He has to fast, so no food after bedtime the night before; he is allowed water or apple juice in the morning until we arrive at clinic. Traffic was ok for rush hour and it took about an hour to get there. We checked in, got our room and then waited, and waited, and waited. Eventually our nurse showed up and it turned out that she had another kid having a procedure that morning and it took awhile to do his access because he was quite young. Meanwhile, Eric was asking anyone who would listen, what number he is on the list. We found out there were 7 people on the procedure list that day, which is a lot; they will only do a maximum of 8 in a day. However, we didn't know where Eric was on the list because they don't make the list until everyone checks in because someone might have a cold which would mean they'd have to go last. Other than that, they generally go from youngest to oldest. 

So Eric's nurse arrived, did the port access and did his bloodwork. By now it is past 9:30. Unfortunately, when I went to check with the head nurse (because Eric would not stop asking) I learned that they wanted Eric's platelet count before placing him on the list. Then they decided to just order platelets right then and get started while we waited for the results of the blood test. Then, because Eric is allergic to platelets, the procedure team didn't really want him in procedure while receiving platelets, just in case he had a reaction. So the platelets had to be finished before he could have his procedure. We never did find out his place on the list, but they came to get him at almost 11:30am. Eric was, understandably, a complete wreck. He was so hungry and frustrated. He was alternately crying, and yelling that he hated the hospital, it wasn't fair and he was going to leave. All the things he goes through at the hospital and this sort of thing seems unnecessarily cruel. My mama heart was breaking for my poor boy.  

The procedure went just fine and they brought Eric back to the room around noon. He does usually wake up from the sedation pretty quickly, but I think they might have brought him back a little early because he was a little confused and also really, really funny! He wasn't sure how I got there or where he was and when I said he was back in his room, he thought we were at home. His social worker had stopped by and he was giving her a good chuckle. He had a pb and j sandwich and a chocolate milk and he started to feel much better. Although, just before he had gone in to procedure, his bloodwork results finally came back. His platelets weren't as low as I thought they would be after the nose bleed the previous day, but his hemoglobin was lower than I expected, and low enough that he needed a blood transfusion. 

It took forever for the blood to arrive upstairs and his nurse to be available to get it started. Luckily, Kristina from Child Life brought him a cute Lego panda set to keep him entertained for our unexpectedly long day. We finally got out of there around 3:30, just in time for rush hour. It took over an hour to get home so we arrived at about 4:40pm, more than 9 hours after we left, both of us absolutely exhausted. On the plus side, Eric is all loaded up on products, having received both blood and platelet transfusions, and should be good to go the next couple days! Unfortunately, he woke up this morning with his back quite sore at the biopsy site and elected not to go to school today (Thursday). 

Appointments Monday and Friday next week. Biopsy results will trickle in but probably 1.5 weeks until we get the full results with the chimerism (donor DNA) info.