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.
