Home!

Eric was discharged yesterday, Monday. We got home about 3pm and it is amazing! Millie was very excited to see us, Joel unphased (and Chuck is out of town). Eric rested on the couch, while I had a nap and wine in the tub. Grandma made us spaghetti for dinner - and Eric tried on her glasses. 

Eric is very tired from his hospital stay and the treatment so taking it easy this week. He'll go back to school when he's feeling up to it. In the meantime, Eric's got a check in at the Oncology clinic and a Dermatology appointment on Friday, and we've got Joel's birthday to celebrate on Thursday. 

Day 6/7 in Hospital...

 ...hopefully! 

Eric is doing much better - thank heaven; that was not fun! We also managed to get ourselves out of isolation, so we've been out hunting Pokemon yesterday afternoon and this morning. Grandma helped yesterday, and despite a lot of confidence, she didn't actually find any!  We're down to only one left to find, but (naughty) Natu is eluding us!

It is Smoothie Sunday on the 8th Floor and Eric and I are both enjoying our smoothies (and fresh veggies and hummus for me) courtesy of West Coast Kids Cancer Foundation. Thank you WCK! 

Also, and I can't believe I almost missed this one, huge milestone over here! Eric has learned to swallow pills! He was super impressive, learning in less than 24 hours. I see both of our lives getting a bit easier - and less disgusting! 

It seems as though we are on track to go home tomorrow. All those terrible symptoms have resolved, leaving Eric with just a bit of nausea, which is unpleasant but can be managed at home. Cross your fingers & toes! 

Day 4/7 in Hospital

I wish I could say it's been an easy 4 days, but the last 24 hours were anything but. In addition to the chemo, we are in hospital to see all the "ologies" for a full work up pre-BMT. One of those "ologies" was endocrinology. Our team suspected that Eric has acquired adrenal insufficiency. This is common in people who are on steroids for a prolonged period of time, which Eric was to treat his lung GVHD in the summer. Basically, his body gets so used to being given steroids that it stops producing them. Eric was taking a "maintenance" dose of hydrocortisone to replace what his body would have made, as a precaution, while we waited for a test to diagnose. Fast forward to this week and our chats with endocrinology. It was agreed that it would make sense to do the test while we were here this week and it was scheduled for Friday morning. Eric had to stop taking his hydrocortisone Thursday morning so it could clear his system and see if his body would produce any steroid on its own. He woke up a bit nauseous Thursday morning and had a dentist appointment (the only part of the work up that doesn't include "ology" in its name.) He was light sensitive and irritable (who isn't???) at the dentist, but back in the room settled in nicely to show off magic tricks by Eric the Incredible, which he's been doing for the staff all week. An hour or so later, he had an appointment with Audiology, for which he was again irritable and now also complaining of a headache. Back in his room, he settled for a bit but then his headache got worse and he became nauseous again. I'll save everyone the details, but it went from bad to worse throughout the afternoon and evening. Despite all the meds, he ended up vomiting 5x, he spiked a fever, his heart rate was high, his blood pressure low and oxygen levels low. His nurse had to take blood cultures due to the fever and they started him on blow by oxygen (they put the oxygen mask beside his face instead of on it.) The dr had said before she left for the day that she'd let the on call team know if he didn't improve that they could restart the hydrocortisone, but given the timing it was difficult to tease out if all/part of this was due to the chemo that had just started (though a reaction like this would be unusual for these particular chemo meds) or could be a random bacterial (fever) or viral (lungs) infection. As things got worse through the evening, the on call team decided to restart the hydrocortisone. Eric was given an IV bolus of hydrocortisone as well as a regular IV dose every 6 hours. 

No surprise that I didn't get much sleep last night, but Eric did wake up this morning feeling somewhat better and was able to come off the oxygen. Unfortunately, that only lasted an hour or so when his temp went back up and his oxygen levels decreased again when he had a little morning nap (from the Gravol he's getting for nausea). With another dose of Tylenol, continued hydrocortisone, and all the anti emetics, Eric has steadily and significantly improved throughout the day. I asked his doctor this morning if this could all be due to adrenal insufficiency and stopping the hydrocortisone. She said it was too soon to tell; we needed to see how he progressed through the day, if the cultures developed anything and she also ordered a chest x-ray and nasal swab. The nasal swab gets us on isolation, so neither of us are allowed to use any of the communal areas on the ward (like the coffee/tea/microwave!!!) The endocrinology team checked in and also agreed that in the absence of other findings, most of the side effects were likely related to adrenal insufficiency. Its been almost 24 hours and the cultures are still negative and the chest CT looked clear. At this point, I am going to assume that Eric has adrenal insufficiency and he desperately needs that maintenance dose of hydrocortisone - and this was an awful way to find out!    

Eric is currently relaxing comfortably in his bed, watching something awful on YouTube, and receiving a platelet transfusion. Before the terrible last 24 hours he was running all around the ward, shouting excitedly while hunting Pokémon, and new participants for his magic tricks. I'm hoping he'll be back to that level of enthusiasm tomorrow and my biggest problem will be entertaining him all day. 

If you made it through all that medical crap, I'm impressed (and sorry) but will reward you with pics of therapy dog Olive and the x-ray giraffe below. 

Hospital

We heard from Eric's team at the hospital today. They got access to the medication and Eric will be admitted tomorrow for 7 days (and hopefully that's it.) Our appointment is at 12noon. I have some packing to do since I spent most of the day cleaning Eric's room instead of packing! 

Update

Thank you to everyone for the well wishes following last week's biopsy. I've been having a really hard time this past week, which is why I haven't updated, but I'm feeling a bit better now that we have a plan going forward. 

So first, the actual biopsy procedure went just fine, very straight forward. Eric did have a platelet transfusion after the biopsy when we were at clinic last week. His platelets were a little low and we saw a weekend of sledding on one cm of snow/mostly frozen grass, and a lot of bruises, in his future. 

The results of the biopsy are a little confusing. Eric's marrow is showing 5-10% blast cells; those are the bad cancer cells. However, the chimerism (DNA) is showing that the donor cells are up to 23% from 13% on the previous biopsy. It is unusual to see the donor cells have a resurgence, instead of losing the graft which is what we expected to see. Obviously it is nice to see his donor cells putting up a fight against the MDS, but it is not expected that they will win in the long run; that just doesn't happen with MDS. 

At this time, the only treatment for MDS is a bone marrow transplant, but a bone marrow transplant is risky, especially a second one, and will make Eric very sick. Since he's outwardly so "well" right now, it is really hard to contemplate putting him through that. The Doctor has offered us a "bridge." It is a relatively new treatment and involves pairing the 5Aza that he has had previously, with an additional medication called Venetoclax. It is a 28 day course: 7 days of 5 Aza and Venetoclax, plus an additional 21 days of the Venetoclax. Eric will go into hospital for 7 days since the 5Aza is IV and also to monitor his reaction to the Venetoclax. Following the 28 day cycle, he will have another bone marrow biopsy to determine if the treatment has been effective. Effective would mean stability, and possibly even improvement of his current condition. If it works, we could do it for additional cycles. Even if it works, it is not a solution, only a bridge to a bone marrow transplant; however, it may allow us the opportunity to delay the transplant and the potential to improve his condition in advance of a transplant. The dr has to access the medication still, but is expecting that Eric will be in hospital by mid next week. Joel's birthday is in less than two weeks and we want to be home for that! 

Eric was back at clinic yesterday for a check up and had a red blood cell transfusion. Grandma Wendy is in town and came to keep us company. I told her that after the transfusion Eric would be running circles around the house. She was still surprised when Eric actually did start running laps around the center of the house - and timing himself! The red blood cells give him so much energy; it is so good and so exhausting for the rest of us! 

In the meantime, Eric has been absolutely loving the snow and sledding every opportunity he gets! 

Biopsy Rescheduled + Pokémon

Eric's biopsy was rescheduled from Wednesday to tomorrow - Friday. Apparently the procedures list was quite long on Wednesday and since he has to fast, it seemed like a good plan to reschedule when we were asked. 

Did you know that Eric loves Pokémon? 🤣 Everyone who knows him knows that he is absolutely obsessed and his knowledge is incredibly in-depth and quite shocking. He has dreams of being a successful YouTuber (PokéTuber) in the near future. In the meantime, he has started a YouTube channel and would love for everyone to check it out - and like and subscribe! 

PokeRoom - YouTube

The kids were thrilled to play in the snow this afternoon, but I didn't take any pictures, so instead you get a pic of our dog, Millie, just because she's cute. 

Last Week of Winter Break

That title is more depressing than I would have expected at the start of break. I thought I might be tired of my kids incessant fighting by this point, but actually they've been pretty good. Meanwhile I've enjoyed spending most, if not all, of the day in my pjs, reading books and napping. I am not looking forward to the return to real life. 

Eric was at clinic this past Wednesday, January 3 and had a red blood cell transfusion. He has now had 3 blood and 1 platelet transfusions since his relapse. Again, please consider donating blood if you are able! For those that are local, Baker Drive Elementary is hosting a blood drive in Feb & March. I'm already signed up for March 2 at 11:05am at Moody Middle.