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. 

Weekly Check Up Tuesday, Dec 17 and Friday, Dec 20

Eric had to go in twice this week after his platelet count was so low last Friday, but both days were planned in advance. 

First, again thanks to Starlight Children's Foundation, we all went to Toys R'Us on Sunday morning for a private (only Starlight families, before the store opened) shopping experience. It was super fun and I really enjoyed comparing Joel's height to Geoffrey the Giraffe's height. Spoiler alert, the giraffe is taller. 

Uncle Jon came to visit for the week and, among other things, we visited the Lights at Lafarge Lake, which are magical! Eric went to school everyday he was available this week, including for his class Christmas performance and Christmas party. He is still quite tired, but also still not too nauseous. 

Tuesday Eric and I went to clinic and brought Uncle Jon along. Knowing that Eric's platelets had been less than 5 and that he'd had a platelet transfusion on Friday, we all took a guess at what his platelet count was going to be. I guessed 6, Jon guessed 7 and Eric guessed 8; he said he was being optimistic. I won!! They were 6! There is no real prize, so I've got to brag here ;) Eric had another platelet transfusion and we made it out at a reasonable time. 

For Friday our appointment was 11am, but we all believed Eric would need blood and platelets so that's a bit of a late start. Our appointment was initially changed to 9am and then late on Thursday changed again to 8am. I guess clinic is a bit of a zoo today with the holidays coming up. We had to get an early start but traffic was a breeze! We actually ended up at clinic before they opened. Eric stayed accessed on Tuesday so didn't have a port access today and they were able to do his blood work right away. We got his hemoglobin back and it was 88. So it has dropped a little, but is falling slowly and not at a place where they would typically do a transfusion. We were waiting and waiting for the platelet count, which generally means someone has to look at it under a microscope, an indication that it is low. Eric's doctor came in and said he called the lab to check and was told that either the platelets were clumped or they were 22. He said you have to have platelets in order for them to clump, so either way, Eric didn't need a platelet transfusion. This is on the basis that we are no longer trying to make it until next Friday. Since the clinic is shaping up to be chaos on Friday after being closed Wednesday and Thursday, our nurse clinician suggested instead that we come in early next week and then try and make it a week from there, in order to avoid the Friday. All this to say: 1) we finished way earlier than expected today and got home a little after 11am, and 2) we are currently tentatively planning to be back in clinic Monday the 23rd and Monday the 30th and then a bone marrow biopsy Monday the 6th. 

One more update from me before Christmas! 

Weekly Check Up Friday, Dec 13

We've had a pretty good week. Eric is 12 days into his 28 day cycle of oral chemo and is feeling so much better than he did in the last round. He's not eating a tonne, but he is eating and he's super tired, but he's not nauseous and not having tummy pain which is a huge win. Eric still hasn't been attending school much because he's so tired, but his class had a field trip to the swimming pool this past week. Eric assumed he couldn't go because he hasn't been allowed in a public pool in 2 years. However, I called the pool in the morning to check how many school groups were booked in and it turned out it was only the one group so I checked in with Eric's team and we agreed that in this case the benefits out weighed the risks and he got to go!!! He was so happy and had a blast playing with his friends at the pool. Last Sunday we got to attend a Starlight event at the Landmark theatre in New West to see Moana 2 in the comfiest recliners with popcorn and smarties. Yesterday, even after many hours at clinic, he powered through to go to a birthday party where he was described as the life of the party, and not the tired mess I expected him to be. 

We agreed with Eric's team last week that we would do a community blood test at LifeLabs on Tuesday to see if he needed to come in on Wednesday or if we could wait until Friday. The LifeLabs test showed that his counts had held from the transfusion the previous Friday. I was very happy not to have to go into clinic on Wednesday, but even more excited that his counts had held and maybe that meant an improvement in his marrow. 

Fast forward to Friday. Eric's bloodwork comes back and his platelets are "<5" as in too low to even bother counting 🤦 It seems maybe somehow Tuesday's test wasn't quite as accurate or who knows. At any rate, Eric needed a platelet transfusion at clinic yesterday. Luckily, everything went super smoothly and we got out before traffic got too bad. Eric's hemoglobin was down as well, but not low enough to require a transfusion yet. All of this has bought us two visits to clinic next week; we are scheduled to be in both Tuesday and Friday with the assumption Eric will need platelets on both of those days and blood on one of the days. 

Monday, December 2 to Friday, December 6

Eric and I are driving into the clinic every day this week for outpatient IV chemo. Fingers crossed for light traffic and quick clinic visits! 

Day 1/5: Traffic is so much better at 9:30am and everything went smoothly at clinic, including the port access. Eric will remain accessed for the week, so no more pokes the rest of the week, but getting used to a "tail" hanging off your chest takes some doing and he had a bit of trouble getting a comfortable position for sleeping Monday night. At clinic he had the port access, blood work, an IV anti-nauseant and then his IV chemo and we were all done in less than 2 hours, round trip 4 hours. His platelets were low at 14, but since we were back all week, no need to do a transfusion today. Eric is already finished the very, very tall Ninjago Lego set from Uncle Jon (thank you!) that was part of a bribe designed to encourage Eric to choose to have this treatment as an outpatient and not an inpatient. 

Day 2/5: Traffic was pretty good today, but not quite as good as Monday; perhaps less people go to work/school on Mondays? No access required, so should be super fast - bloodwork, IV anti-nauseant, IV chemo and go! But nope. Eric's platelets were down to 10. Since he's back tomorrow, we could wait until then, but for a variety of reasons (for Eric, LEGO) we both wanted to get it done today. Unfortunately, the platelets took forever to arrive, even though they were on site. I'm not sure what happened, but we didn't make it out until 3:30 which meant traffic! Once Eric knew he was getting platelets, he hit up Kristina for a Lego set and managed to build the whole thing before his platelets even started! Today is giving Tuesday and there's some sort of event in the lobby. I took Eric's picture in front of the Mighty sign, but his eyes are closed! 

Day 3/5: Nice and quick at the clinic today! Got home in plenty of time for Eric to finish the huge Lego set that Auntie Koo Koo and Tad gave him to keep him occupied this week (second part of the bribe.) Thank you! Still feeling pretty good, but increasing oral chemo dose today, so we'll see what tomorrow brings. 

Day 4/5: A little nauseous this morning :( On the plus side, I gave Eric anti-nausea meds this morning, which means he didn't have them IV at the hospital. He only had his IV chemo and we were in and out so fast, only an hour! The Mad Hatter photographer, Jane Thomson, had a blow up of Eric's photo for an event and asked me if I wanted it so we stopped by her house to pick it up and it is HUGE! I told Eric I was going to frame it and put it over his bed, but he thinks it might give him nightmares! ;) We left Vancouver early enough to hit Costco on the way home for a little Christmas shopping and a lot of grocery shopping. Eric's tummy hurt on and off through the day, but not too nauseous. 

We are planning for a long day tomorrow. We knew from Eric's bloodwork earlier in the week that he would need blood and platelets if we don't want to go back again early next week. We had the option to do blood Thursday and platelets Friday for 2 medium length days, but we opted for nothing today and everything tomorrow for a short day and a long day. Eric coordinated with Kristina today to pick out his Lego for tomorrow, so he's ready to roll. Thank heaven for Child Life and all the donations they receive. 

Day 5/5: Ugh! That was so much longer than we were prepared for :'( The chemo only has a one hour shelf life so the nurse has to call the pharmacy for it when we're ready to go. Only they didn't answer their phone for over an hour! We ended up about 1.5 hours behind right from the beginning because the chemo was first, then platelets, then blood. Eric was feeling off, not nauseous, just tired and generally blah for most of the day so he didn't even do much of the Lego set that he had picked out yesterday. He perked up a bit later in the afternoon, but by the time we left - at SIX!!! - we were both exhausted. Stopped at McD's on the way home for some dinner and made it home about 7pm. I unpacked our bag, put on my pjs and climbed right into bed! 

(He's not asleep with a popsicle; he's looking at his iPad)

Next up... Eric's done the 5 days of IV chemo and is now day 5/28 in the oral chemo cycle. His appointment next week is TBD. We don't want to go back until Friday, but his platelets have not been holding out that long. So Eric will go for a blood test on Tuesday at LifeLabs which will determine if he needs to go in Wednesday. 

Weekly Check up Friday, Nov 27 & Biopsy Results

I have been procrastinating this because its a tough one.

Biopsy Results: The results were not what we had hoped. The blasts are gone as I mentioned previously which is the silver lining on an otherwise dark cloud. The abnormal cells that mark Eric's disease (NUP98 rearrangement) are approx 78% and his donor cells are down to only 10%. Eric's oncologist does not believe that we will be able to get the donor cells back this time, as we did last time, which led to Eric's stability from April to September. Of course, that doesn't stop us from hoping.

In the meantime, Eric will start another round of treatment on Monday. It is a repeat of the treatment he completed 2.5 weeks ago and the intent is to maintain him where he's at. This is the silver lining. If the blasts were to take off, he would have to go into hospital and be treated with much stronger chemotherapies that would kill everything. I had a brief discussion with the doctor about longer term next steps, but for now have elected to focus on this round of treatment starting on Monday and staying out of the hospital over Christmas. For this next round of treatment, Eric will have 5 days of IV chemo, but we are able to do this in the outpatient clinic this time. It does mean driving to the hospital for 5 days which Eric is not a fan of, but its quite a short infusion, so we are able to avoid rush hour. Additionally, Eric has been feeling really good the last week or so and is not looking forward to feeling poorly again. So for now, we'll take hopes and prayers that this treatment stimulates the donor cells to take over again, that we are able to stay out of the hospital, and that Eric feels better than last time! 

At Eric's checkup last week, we learned that his platelets were only 6. Thank heaven he didn't get a bleeding nose or injury prior to his appointment because driving madly to the hospital while he is bleeding uncontrollably does not sound fun. So he had a platelet transfusion. On the plus side, I did learn that we can use Reactine instead of Benadryl for one of the pre-meds so he doesn't have to get groggy. We tried it last Friday and it worked, so did it again this week. His hemoglobin was still okay after the transfusion last week. He still hit Kristina, Child Life Specialist, up for a Lego set, but this time he asked for the smaller one since it would be a shorter day with only one transfusion instead of two. 

Friday evening after his check up, we headed to the Coquitlam Express BCHL hockey game where Eric had been invited to drop the puck for #hockeyfightscancer night. It was a special night for our family made more special by the families who joined us. 

And yes, Joel is tall. He is now taller than me at 5'7 and still only 12 years old, but his birthday is 2 months today.