Weekly Check Ups Jan 27 & 29

Following my last post, Eric was feeling so well on Sunday that he asked to go to a park! We just went up to his school where the boys played frisbee and the girls - Millie and I - played fetched. 

Eric was still feeling well on Monday and his school had a professional day, but we had to go to clinic. Our appointment wasn't until 11am and traffic was a breeze. It only took us 40 minutes to get there. It is outrageous that at 8am it can be almost twice as long. Eric's doctor wanted him in to check if his sodium rebounded with the break from his new treatment/medication since Wednesday, and it did. His hemoglobin was also fine, and platelets low, but ok for a few days, so we were able to leave with no transfusions! We got out around 1pm and were home before 2pm. However, his doctor wants us back on Wednesday to check his sodium level before he takes his next dose. 

Eric took his dose Monday evening, swallowing all 3 pills at once! Unfortunately, he then woke up at midnight vomiting, and again at 1:30am. Whenever Eric is feeling nauseous, he carries an empty 4L ice cream bucket around with him, but he rarely uses it (thank heaven!). I always call it his emotional support bucket, which Eric has finally decided to embrace. He's named it Bucky and used a sharpie to draw a happy face on one side and a sad face on the other to describe how he's feeling.  

After Eric was up overnight sick from the side effects of his treatment, Joel woke up not feeling well Tuesday morning. Not feeling well quickly escalated to a full blown stomach bug and he was throwing up all day! I wanted the kids to stay hydrated so I decided to get them some Gatorade, but I couldn't handle the idea of blue vomit, so I got them white Gatorade; turns out they hate it! Apparently it tastes like medicine. I thought I was so smart!

Wednesday morning Joel woke up feeling much better, but took the day off school to rest and recuperate while Eric and I headed back into clinic. 9:30 traffic is definitely better than 8am traffic, but not nearly as good as 10am traffic. Traffic might be making me crazy. Eric stayed accessed from Monday so his nurse was able to get his bloodwork right away. The doctor ordered platelets without waiting for the results of the bloodwork since he'd been low on Monday and had a small (luckily) bleeding nose since we'd last been in. It's always nice to get things started quickly so we can get out quickly! Last Wednesday the clinic was so packed we had to wait to have a nurse assigned, but this week it wasn't busy at all. 

When the platelets finished, Eric's doctor stopped by to let us know that even with the dose of Selinexor (the new treatment) on Monday, Eric's sodium remained stable. The doctor is quite pleased with that and said we didn't have to come back until Monday!!! Only a few weeks ago I was annoyed with having to go to clinic 2x per week and now I'm just thankful that it isn't 3x. Eric was also thrilled and very happy to have his port de-accessed and be able to scratch under the dressing! When I told him it was time to put on his shirt and leave, he said "no, still scratching!" 

Eric often naps, or at least rests, on the car ride home. Most of the time when we leave I tell him that I'm going to nap and he can drive. Recently he said to me with a *tone* "mama, you can't make the same joke every time." I guess I need some new material. 

Eric is feeling okay today, but not great. We've been on top of the anti-nauseants since Monday night so no more vomit, but definitely not quite himself. Hopefully this will continue to improve over the end of the week and weekend as it did last week.

We have a busy weekend ahead since it is Joel's birthday on Saturday and we will officially have a teenager in the house! 

Eric chilling on the couch with Millie Monday afternoon

Weekly Check Ups Jan 22-24, 2025

Well it was a long week with 3 clinic visits, but the visits themselves went pretty smoothly. 

On Monday, traffic seemed worse than it should for a 10:30 appointment, but the rest of the day wasn't bad. Eric's nurse accessed his port with the regular 1" needle as if there haven't been any problems the past couple weeks. Once the bloodwork came back, we chatted with Eric's doctor. He needed platelets, as expected and his hemoglobin was down so we planned for a red blood cell transfusion at one of our appointments during the week. We discussed the new med - dose, frequency, side effects - and I went to pick it up at pharmacy. They had to order it in and it wasn't available until Wednesday, but they were able to get one dose from the inpatient pharmacy so Eric could start taking it on Monday as planned. It is an interesting dosing schedule and he only takes it on Mondays & Wednesdays. The platelets were available and got started fairly quickly and we arrived home at 2:40 just as school was getting out. 

In the evening, around dinner time, Eric started his new med. It is 3 pills but they're very small. He is already very annoyed by the number of pills he has to take and adding this new med, plus another prophylactic med, doesn't help. So he's been practicing swallowing more than one at a time. He thought taking 3 at once was a bit ambitious, but took 2 no problem, and then the third separately. Eric felt fine the rest of the night and woke up feeling fine on Tuesday and went to school for the whole day. And I finally got to go for a massage after having cancelled appointment after appointment since October! 

Wednesday our clinic appointment was early because it was all they had available. We had to leave at 8am which we think is actually the worst traffic of morning rush hour and it did take us over an hour to get to clinic. Just as we arrived in the parking lot, Eric said he felt a little light headed but it seemed to pass quickly. Eric remained accessed from Monday so he didn't have to go through another access on Wednesday and also made getting bloodwork quite quick. We had planned for more platelets on Friday and knowing that Eric would need red blood cells during the week, I asked Eric if he wanted a short day Wednesday and a really super long day Friday or two medium days. He opted for 2 medium days so his doctor had already ordered the blood for Wednesday. Unfortunately, Wednesday is a busy day in the clinic and it took awhile to get a nurse assigned, but since everything was already organized, it went pretty quick once we got started. The reason we were in on Wednesday was to monitor Eric's side effects from the new med, especially the sodium level in his blood stream. The bloodwork did show that it had fallen somewhat, but was still safe. 

Wednesday evening at home, Eric only ate about 2 noodles for dinner and then said he didn't feel good. He was feeling pretty nauseous, but didn't want an anti-nauseant and still needed to take the Wednesday dose of his new med. Unfortunately, he tossed back two of the three and then immediately threw them up. By the time this happened, I was out at trivia (my weekly 2 hour sanity break) and Eric sent me a text: Mama I threw up but its ok you stay at trivia. I should mention that Chuck was at home, and I don't do well with vomit anyhow, but that was the sweetest message. When I got home, Eric was still awake. He did manage to get the new med in, but had some others to take and was feeling poorly still. I managed to convince him to take an anti-nauseant and then he was able to get the other meds done and tuck in to bed by 10, which is very late for him! 

Thursday Eric had really hoped to go to school and just wasn't feeling well enough. It breaks my heart to see him not able to do things he wants to do. However, the 2 of us had a much needed pajama day and with some anti nauseant, he did improve later in the day. Though he does have a new (to him) side effect of dizziness. We're used to dealing with the nausea and have meds for that, but there isn't much we can do for dizzy. He's not eating much, but still very into fruit and milk, and that is about it. Thanks for the strawberries Kristy! Strawberries, watermelon, mango and kiwi are not cheap in January! Why doesn't he want oranges??? 

Friday morning back to clinic for a 10:30 appointment. Eric did wake up nauseous, but was happy to take an anti nauseant before the car ride. We're used to traffic being great on Fridays and especially at 10:30, but it wasn't. It wasn't awful either though. Eric was still accessed from Monday so again quick blood work, and again the platelets had been pre-arranged so were fairly quick, only in clinic for 3 hours! Which is almost 5 hours door to door, but about the best we can hope for with a transfusion involved. At clinic Eric said he wanted a grilled cheese. He really likes the Starbucks ones, with a chocolate milk 2 go, and I was happy to get him anything he would eat. However, he only ended up nibbling on the crust a little. At least he drank the chocolate milk. His sodium was down a little more, but dr is not too worried yet since Eric didn't have another dose of the new med until Monday. He did ask us to come back in to clinic on Monday so that he can see what is happening with the sodium in between the Wednesday dose and the following Monday dose, hoping for a little rebound to keep him safe. Eric's port was de-accessed at the end of the clinic visit and he was super happy to be able to scratch under the dressing! After a long week of clinic visits it was lovely to have Jill bring us dinner; thank you Jill! 

Eric has spent the weekend on the couch watching tv and eating fruit. I cancelled his swimming lesson for today (Sunday) because I didn't know if he'd be up for it. However, he does seem to be feeling better today since he asked for french toast for breakfast and ate half a slice. If you have any tv suggestions for a 9.5 year old boy, please let me know! He keeps rewatching the same shows because he can't find anything new he likes. He has really enjoyed Gravity Falls, Lego Ninjago, Lego Dreamzzz, and Young Sheldon. 

I have no good pictures this week so here's a shout out to all the hardworking moms out there courtesy of Honey Nut Cheerios. 

Weekly Check Up Wed, Jan 15 + Biopsy Results + Next Steps

Woah that's a lot of things in that title! I might need a coffee to sustain me through this update. Actually I drink tea now. It's been a whole year, but I still miss coffee. 

So first things first, Eric finished the huge Harry Potter Gringott's Bank Lego set that Santa brought him. We are running out of room to put his Lego and considering building a Lego shed (not really, but we are running out of room!)

 (It actually has a dragon on top as well and I will replace this photo with one with the dragon after school today!)

On Wednesday we went for Eric's check up and the whole morning was one problem after another, which was extra rough when I hadn't wanted to be there on Wednesday to begin with! The appointment wasn't until 10, but traffic was still a nightmare. Then we get to the hospital and if our appt is at 10am or later, I always valet because there is no parking in the lot by that time. So we pull up to valet and the attendant says they're full. I thought he was kidding because we see him a lot and he's a pretty jokey guy, but no, he was serious. I begged and pleaded and I had to wait a bit while he parked another car, but in the end he did take my car (but don't tell anyone!) We get upstairs and there's a line up to check in to the clinic (this is unusual.) While we're waiting in line a Booking Clerk, from the check in area, comes out and tells me that there are no rooms and we'll have to come back at 12. I had a mini panic fit until a woman sitting on the floor stood up and said "she means us." Turns out their appointment wasn't actually until noon and they had just arrived early. Also the other woman and I were wearing the same colour hoodie. The panic lasted all of 90 seconds and turned out fine for us, but it's amazing what that does to you when you are already living on a shoestring. 

Anyhow, we finally get into clinic, late because of all the hoopla. Eric's nurse was busy when we first got there, and then when she came in to see us she let us know that Eric's doctor had ordered a special blood test and first she has to figure out what blood tube she's supposed to use and then they don't stock the tubes so she has to get the lab to send them up. She talked about waiting to access his port until we had the tubes because they do blood work at the same time. However, I asked her to do the access and the CBC (complete blood count) so that we could find out he's low in platelets and get the platelets ordered and started sooner rather than later and do the special blood test later. So she did that. Unfortunately, the nurses have been having a bit of trouble with Eric's port where the needle hits the right spot but instead of locking in, it pops back out, which happened again this time. Our nurse for the day asked last week's nurse to come and help since it had happened to her as well. The second thought she'd gone in at the same exact place as the previous nurse, but Eric screamed that it hurt and that only happens with a miss. I asked if a longer needle would help because one nurse in the past suggested he might need a longer one. They usually use a 1" and the next size up is 1.5" so they used that and it worked great, but stuck a half inch out of his chest which is pretty uncomfortable for him. Fortunately, it was only for a few hours. By this point, its already almost 1.5 hours into his appointment and we don't even have bloodwork. Thankfully, this was the end of our rough morning. After that, the blood for the CBC was drawn, our Nurse Clinician came and let us know that Eric's platelets were 10 and the doctor was ordering platelets. The platelets arrived; the special blood tubes had arrived and the blood was drawn before the platelets started. We managed to leave the hospital at 2:30pm. 

While the platelets were running, Eric's doctor came in for an exam and let us know the results of the biopsy, which are essentially the same as last time. The abnormal cells are 76% (they were 73% last time) and his donor cells are 11% (they were 10% last time.) The changes are considered statistically insignificant, which essentially means the last round of chemo did nothing, or as the doctor would say, it maintained him where he was at instead of having the disease take off. The doctor, using all of his technical medical jargon, described the situation as "stuck." It is clearly not good news to have donor cells at 11%, but I honestly believed with all of my heart that he would tell us that Eric had lost the graft. Since he hasn't lost the graft, we still have options to try to stimulate the donor cells. That is where we left things on Wednesday, planning to have a Zoom call with the doctor on Thursday so that Chuck could attend, Eric didn't have to listen to the adults blather on, and the doctor had more time (since Wednesday is his clinic day, he has other patients to see.)  

Yesterday, Thursday, Chuck and I sat down in front of the computer and talked to Eric's oncologist for 1.5 hours. He walked us through a number of options all the way from do nothing (not an option for us) to a 2nd bone marrow transplant. We discussed everything backwards and forwards, asked a lot of questions and got a lot of answers. The option that we have chosen, which is also the one the doctor is recommending, is to start a new oral "therapy." (Side note: it just kills me they call these toxic drugs therapies.) So this is a new medication, currently in pediatric trials for AML. AML is Eric's secondary condition and it bothers me that there are no options for MDS (his primary condition) beyond the bone marrow transplant. However, as the doctor explains, these are targeted therapies that work on the particular mutation that causes Eric's disease, so there is still hope that they will work on his disease long term. Eric will start the new medication on Monday and it is taken every 3 days. He is able to do this as an outpatient, but the doctor wants to keep a close eye on him for side effects so we will be at the clinic Mon/Wed/Fri next week. The potential side effects are the usual nausea, vomiting, decreased appetite, and fatigue, as well as a handful of other fun new ones that he will hopefully avoid. He is going to start this treatment for 2 weeks and then do a check. He will likely continue beyond that point while we wait for the results, and, depending on the results, we may layer in other "therapies" as well. I will review those as they become applicable. We try and keep it simple for Eric, not outlining all of the possible options, etc, but he does know his donor cells are 11% and he knows he's starting a new med Monday. This allows him to be focused on the playdate he has scheduled for tomorrow and swimming lessons on Sunday, instead of all the medical stuff. 

Finally, I donated blood this past week so this is your reminder to book an appointment at blood.ca. If you live in the tri-cities, appointments are available at Moody Middle School on Saturday, February 1. If you think you are too busy to donate, consider that I drove to Vancouver, spent all day at the hospital (nightmare day described above) drove home and 30 min later headed out to donate blood. I was gone less than an hour, including getting gas on the way there (hurt more than the needle!). Then I made and ate dinner with the family and went out to Trivia Night where our amazing team finished in the top 20 (ha!!) After my appointment Eric told me he wanted to donate blood so he could have free chips and other snacks!

And that's it for us! Hope everyone has a great weekend. 

Weekly Check Up Friday, January 10

Eric brought his favourite stuffy, Snowball, to his biopsy on Monday and, unfortunately, we forgot it at the hospital! I contacted our Nurse Clinician as soon as we realized but she wasn't able to find Snowball. Luckily Snowball has a twin, Snowflake, but we do have two for a reason and I was quite concerned about not being able to find Snowball. Then, on Thursday afternoon I got an email from our Nurse Clinician saying that Snowball had been found and she would put him to work answering her phone until Eric was back Friday to retrieve him. Eric and I were both quite relieved! 

After the biopsy Monday, Eric still had to go in for a check up on Friday because of his low platelet counts. As expected, his platelets were low so he had a platelet transfusion. Additionally, his hemoglobin had dropped low enough that it was time for a red blood cell transfusion as well. The double transfusions can make for a very long day at the hospital, but we were there relatively early, at 9:30am and made it out around 3:30pm. Luckily for Eric, Kristina from Child Life had a nice Lego Dreamzzz set to keep him occupied. Unluckily, there was an accident on the highway at our exit that I didn't hear about on the radio until we were already in the exit lanes, so it was a very, very long trip home; thankfully, Eric slept most of the way so he didn't find it too bad. 

I had hoped to have some of the biopsy results at the appointment on Friday, but none of the more detailed results were available. We do know there are still no blasts showing up in the marrow, which is good; however, they can still see the abnormal cells that mark Eric's disease, which is very very not good and not what we are hoping for. This analysis is really just a quick look under the microscope and does not quantify anything. We need the more details results for that. Once we have the more detailed results, Chuck and I will sit down with Eric's Oncologist to discuss how to move forward. This will likely be at the end of the week, though I may need some time to digest it. 

I was also hoping that Eric's platelets would have held a little better from Monday to Friday. I knew they wouldn't be high, but was hoping for a bit of a reprieve from the clinic. We've been attending twice weekly (plus the 2 day admission) for over a month now and I'm getting pretty burnt out. I did talk with Eric's doctor about holding off until Friday anyhow, knowing his platelets would be low and the risks associated with that. However, after thinking about it over the weekend, I am not sure I am actually prepared to take the risk, so will check in tomorrow about going in on Wednesday instead. 

It's been a pretty low key week on the home front. Eric did make it to school for full days every day he was available this week which was Tuesday, Wednesday, Thursday. Other than that, lots of relaxing at home for all of us as we finally recover from the viruses that hit us over the holidays. 

Bone Marrow Biopsy Monday, January 6

As discussed in detail last week, we chose Monday for Eric's biopsy because there were less people on the procedure list than on Tuesday. Unfortunately, it did increase to 5 people on the list and Eric did have to go last because of the viruses. However, he was in at 11:30, asleep by 11:35 and he did a great job waiting. He was busy and distracted with a Pokémon game on his switch and didn't complain at all about being hungry. The procedure was quick and he woke up really well to chocolate milk, strawberries and a pb&j sandwich. Eric's platelets were also low yesterday, though not as low as they have been lately. His nurse was amazing, getting the platelet transfusion finished before his biopsy so we were free to go once he was ready. He likes to chill at the hospital for awhile until he feels the sedation effects lessen. Of course, he still slept the whole car ride home. Now we wait for the results; next check up is Friday and we should have the early results then. 

Enjoying at Starbucks cake pop treat after biopsy

Weekly Check Up Thursday, Jan 2

Happy New Year! 

Eric had an appointment at clinic today for a check up. He's recovering well, lungs sound clear. He did need another platelet transfusion today, but hemoglobin is holding up okay. With all the sickness I neglected to mention that he finished the round of oral chemo on Sunday. This round didn't hit him as hard as the last, physically, but it's still nice to be done and have one less med to give/take each day. The doctor said it's difficult to judge what his marrow is doing based on his counts over the last week because of the viruses. Either way, the plan was to have a bone marrow biopsy next week to check what is happening in the marrow. Eric is sedated for the biopsy which means he has to fast; generally they take the kids on the procedure list from youngest to oldest, but if you are on contact precautions because of a virus, you go last. Eric is still on precautions through Tuesday so either he has to be last on Monday or Tuesday, or he can go in age order on Wednesday, but we'd also have to go in on Monday for platelets. None of them were great options, but the procedure list on Monday only had 3 other kiddos on it (for now) so we chose that option. Short version of that long story: bone marrow biopsy scheduled for Monday.    

In the meantime, we are going to try and enjoy the rest of the holiday, while continuing to recover. Eric is having a camp out in the living room tonight. He's pushed the couches together and then also put his mattress on top of them (with Daddy's help.)