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.)

Eric's Home!

Eric was discharged yesterday (Monday) afternoon after only 2 nights in hospital!!! He is feeling pretty good with only slight congestion and slight cough. Meanwhile, Chuck had to come relieve me at the hospital on Sunday morning because I was too sick to stay there. Our plague ridden family will be celebrating New Years Eve at home this year, hopefully at 9pm so we can all go to bed early. 

Eric's next appointment/check up is for Thursday, January 2. 

Happy New Year! 

 Eric at home building a Lego set he received for Christmas. 

Post Christmas Check Up Thursday, Dec 26 and more...

First things first, we had a wonderful Christmas. Eric woke the whole family up at 7:11am. He said he let us sleep in for 11 minutes! Granny Joan, Uncle Dave, Auntie Jenny and Uncle Jay all came for brunch mid morning. Then they headed out to cook the turkey while we got to nap, or for Eric, build Lego, and Joel, play video games. Then we headed over to Granny's for turkey dinner and figgy pudding. Granny pours rum all over the figgy pudding, lights it on fire and we all sing We Wish you a Merry Christmas. Joel said "do families really do this? and I said "well yours does!"

On Boxing Day Eric and I trekked into the hospital. Traffic was amazing; we left late and arrived early. Neither of us wanted to come, but this was the appointment he was given because there was no room in the clinic for him on Friday. Turns out it was a good thing we came in, since his hemoglobin was down to 77. He typically gets headaches at 80 and didn't have one yet but I'm sure it was right around the corner. His platelets were also down to 20. He didn't necessarily need platelets, but the doctor didn't think it would be safe to let it go until his next appointment, which was planned for Tuesday. Unfortunately 4 hours into the appointment, neither of these blood products had even been ordered! I was near tears from frustration. Once they were finally ordered, our nurse did her best to get things moving smoothly and get us out as quickly as possible, but we didn't get home until 7:30pm. During our very long day at the hospital, we vowed to have a Boxing Day do over the following day. For me that means, pjs all day, lots of tea/coffee, couch time, playing with Christmas presents, etc. So that is what we did! Though I woke up in the morning with a cough and Eric with a runny nose, we both stayed in our pjs all day and had a wonderfully relaxing day. 

Saturday morning (today) Chuck and Eric were both awake before me. I woke up to Chuck telling me Eric had a fever. Fever means we call the oncologist on call and they tell us to come to the ER, which is exactly what happened this morning. Since I already had an over night bag packed, I was able to sneak a shower in before we left, and Joel woke up so we got to say bye to him. We arrived at the ER at about 10:15am and it was standing room only. Luckily the oncologist let them know to expect us and we were ushered right into a room. The turkey has not registered a "true" fever again since arriving at the hospital, but his temp is elevated and he clearly feels like poop. He even vomited at one point today. They did his port access and the ER nurse did very well, a little slow but got it first try. Did blood work and additional blood for cultures (looking for a bacterial infection), a nose swab and cheek swab, and started running some antibiotics as a precaution. The results of the swabs came back and Eric actually has TWO viruses: RSV and HMPV. I hadn't heard of the second one before, but the ER doctor said they're both going around right now. They are both upper respiratory viruses and don't generally require treatment. However, for Eric a fever generally means a minimum 72 hour admit. The oncology protocol is to give IV antibiotics for 48 hours while waiting to see if the cultures grow anything, even though the viruses are most likely the cause of the fever. Therefore, Eric has been admitted to hospital. It also means that we are on "contact precautions," basically isolation. We can't use any communal amenities - playroom, kettle, coffee, family lounge, laundry, etc. 

We were admitted to a room on the oncology floor around 2:30pm and are resting comfortably. We are lucky enough to have a microwave in our room for this visit which does make things a little easier. Eric is also receiving a platelet transfusion, since his platelets were low again today despite the transfusion only 2 days ago. This is not how we wanted to spend this week, but I guess we should be happy that we managed to stay out of the hospital over Christmas, since that was really my only goal for the holidays. 

Stay tuned for an update about our discharge, hopefully soon!    

Pre Christmas Check Up Monday, Dec 23

I wish I could say Weekly Check Up, but alas, we have to go back again this week. 

Eric and I headed into clinic this morning and traffic was amazing! Our nurse was all ready to go with all the supplies for the port access which was quick and easy (Eric may not agree with the easy part.) Eric's hemoglobin is still falling, but still slowly, so he didn't need a red blood cell transfusion today. Unfortunately, his platelets were again "<5" so he needed a platelet transfusion today. It's only been 6 days since his last transfusion and with his platelet count so low today, the doctor was not comfortable letting him stay away for a week. The doctor said he was going to have us come back on Friday, but apparently there's no room in the clinic on Friday. Instead they've asked us to come in on Thursday, Boxing Day, to the inpatient ward, but just for bloodwork and a possible transfusion, not to stay overnight. 

I counted today and Eric has had 31 platelet transfusions and 21 blood transfusions since his diagnosis. He's also had 14 bone marrow biopsies and spent 145 nights in hospital. Here's your holiday reminder to donate blood; children like Eric need your donations year round. 

Thank you for reading, for caring for Eric and our family. We truly appreciate each and every person who assists us everyday in every little way. It might be a small gesture for you, but it means the world to us. Thank you for keeping us in your hopes/thoughts/prayers. Merry Christmas with love from the Wagner Family.