Bone Marrow Biopsy Today

Eric and I were at the Oncology Clinic today for his follow up Bone Marrow Biopsy. He's done so many of these that they are quite routine at this point. The worst part (for both of us) is that he has to fast for the sedation. He was a bit hangry this morning, but mostly did very well. The only difference today was that he's always had them on his right hip and today the Doctor performing the procedure said they were going to do the left hip because he's had "quite a few" all on the right side. I was curious how many he had actually had so I looked through my notes since October 2022 and discovered he has had TEN! Also, since I have both my notebooks here, we're up to a total of 19 blood transfusions, 18 platelet transfusions and 144 nights in hospital, all since October 2022. 

We're back at Clinic next Wednesday for Eric's regular check up and also have an appointment at the Respirology Clinic to follow up on Eric's chronic cough and lung function. 

Now the hard part for the parents...waiting for the results of the biopsy. In the meantime, Eric got the go ahead to go back to school tomorrow. His white blood cell counts are still low, but starting to recover and he's been feeling really well this past week. 

Eric did get to go ice skating with his class yesterday and he had so much fun! He skated all around the rink, and he and a friend took turns pushing each other on one of the chairs. 

Happy at Home

Eric had a clinic appointment yesterday and it was surprisingly difficult to drive back to the hospital after only getting out on Wednesday. He had bloodwork and a check up and is doing well, but did need a platelet transfusion. He is up to 7 red blood cell transfusions and 7 platelet transfusions since his relapse. Please donate blood if you are able. Click here to find a location near you:

https://www.blood.ca/en 

Eric is feeling so much better since discontinuing his most recent treatment, an oral chemo med. Looking back I can see the tummy pain and nausea crept up slowly. Now that we are home and he's off the meds he doesn't have any tummy pain, and his appetite and energy are back. His counts are still low, so no school yet; though he will be going on his class ice skating field trip on Tuesday.   

Next up is another bone marrow biopsy on Wednesday. The results will give us an indication of whether or not this last treatment worked. If it did work, I expect we will repeat it, but at a lower dose to try and avoid the unpleasant side effects. 

Check out Eric's fancy McD's meal; apparently this move is trending. Thanks for lunch Crystal! 

Hospital Day 8 - Updated

We are still here... though Eric's BP this morning was good, so I've got my fingers crossed the Dr will let us go home today. She should be in soon 🤞

I was so glad to see our regular (inpatient) doctor on Tuesday after the long weekend. She came right in and said we'd lower the dose of the med we think is causing the high BP and monitor for 24 hours. I couldn't get the Dr on Monday to lower the dose! She also told us to get out of the hospital for a few hours. So we went to Toys R'Us to pick up a new Lego set - the best entertainment in the hospital! And to McDonald's for Eric's Mango-Pineapple Smoothie craving, but the Kerrisdale McD's doesn't have smoothies! And then to Granny's for a visit. On our way back to the hospital we hit up DQ/Orange Julius for an Orange Julius to make up for the lack of smoothie. 

Eric is currently building his new Machamp (Pokemon) Lego set and chatting with Ken the amazing volunteer about spiders (eek!) and now they are onto the Loch Ness Monster. 

Update: we were sprung free today, arriving home about 1pm!!!

Pic of impromptu Pictionary game at Granny's yesterday. 

Go Fund Me

My lovely mom friends from the Baker Drive Elementary community, have set up a Go Fund Me in support of our family. 

https://www.gofundme.com/f/eric-fights-big

Thank you wonderful friends; your support means the world to us and we are so lucky to have joined such an amazing community and met you all 💕

Hospital Day 6

We're still here...

Today is the third day that Eric has been feeling quite well and I'd say he's been completely back to himself the last two days. His tummy is even better than it was in the week before we came in. Unfortunately, in a continuation of the rollercoaster theme, his blood pressure spiked Friday night and they had to give him a fast acting blood pressure med. That brought his BP down all night, but the next morning it was back up, so he got another dose. That brought his BP down all day and night, but this morning, it was back up again so he got a third dose, and then at his 4pm vitals check, it was back up again so he got a fourth dose. They are very careful with Eric and high blood pressure because shortly after his new cells engrafted following his transplant in Jan 2023, he got Posterior Reversible Encephalopathy Syndrome (PRES) - a portion of his brain became swollen and he had numerous subclinical seizures affecting his eyesight and lucidity - caused by high blood pressure. The doctors believe his current high blood pressure is being caused by the stress doses of hydrocortisone he is receiving, because of the fever and vomiting, due to the adrenal insufficiency. However, they are also very careful not to lower the stress dose too much because it turns out he's very sensitive to that as well and it causes fever and vomiting. So we're a bit stuck. Our doctor did warn us from the beginning that he'd be on meds to treat the side effects of other meds. Its exhausting. 

Also, since Eric is feeling well, but cooped up in his room, he's crazy!!! Yesterday at bedtime he was so hyper (and disagreeable!) Luckily we did have a visit from Asher and Kate yesterday. The boys watched YouTube, played a game and ran around on the 5th floor patio while Kate and I chatted. If he hadn't had that visit yesterday, bedtime might have been even worse! 🤯 Asher also brought Eric a MEGA (like LEGO) Pokémon set which entertained Eric for 4 very peaceful hours today. Thank you Asher and Kate!

I am hopeful we'll get to go home tomorrow, but I've been saying that for the last 3 days! 

Pics of Eric and Asher playing on the patio (Eric was making funny faces), and the completed Dragonite Pokémon.

 

Rollercoaster

The last few days have been a rollercoaster and not the fun ones that Eric enjoyed at Disney World. 

On Wednesday he had a platelet transfusion because his platelet count was only 18. They decided to stop his current treatment; there was only 4 days left and the dr says its done what we wanted it to since his white blood cell counts are wiped out and its probably the cause of all this nausea and tummy pain. Though he did also have a tummy xray just to check everything is normal in there (it is). They also did all the swabs and samples today (all negative). Eric was lethargic most of the day, but no fever after about noon. 

On Thursday Eric was feeling so much better, though his hemoglobin appeared to have dropped substantially from the day before. After some bloodwork to rule out nefarious causes, the doctors decided that his hemoglobin count upon arriving at the ER was probably inflated due to dehydration. That makes sense to me as well because Eric was having headaches which he gets with low hemoglobin and I was quite surprised to see the number in the ER. So he did receive a blood transfusion on Thursday which usually makes him very energetic. Unfortunately that didn't happen and before bed he started to feel super nauseous, threw up his evening meds and got diarrhea. And then he got a wicked headache too. We ended up awake until midnight because of the vomit and headache and meds for the headache, which then made him itchy, so waiting for Benadryl - ahhh! Oh and just for fun, some blood popped up in his urine, making us wonder about a UTI causing the fever. Granny came by for a visit and took our laundry away to wash it for us. She came back with clean laundry, snacks and Pokemon cards! Thank you Granny Joan! 

On Friday morning Eric woke up feeling awful - tummy pain, nausea, headache. This time he took Benadryl before the headache med so didn't get itchy and his headache went away, but despite all the meds, the nausea would not go away. He ended up throwing up and there was some blood in it. His blood counts came back and both his hemoglobin and platelets were low so he had both blood and platelet transfusions. He was so sad to be feeling poorly today after feeling better on Thursday, but he did start to feel better through the afternoon. Unfortunately he also started seeing things, like sparkles on his blanket, images on flat surfaces, the bathroom flooding, streamers falling from the ceiling. The dr came and assessed him and believes it is from "poly pharmacy" - too many different meds all at once. Jill came by for a visit and brought a "picnic" lunch, some snacks and a mango for Eric's mango craving! Thank you Jill!

Saturday morning, Eric woke up feeling great and not seeing things - yay!!! His blood counts are good too! Daddy came by for a visit today. Kathryn brought us coffee and donuts and took me out for a walk while Daddy was on duty; it was so nice to get outside! Thank you Kathryn!!! Today is all about monitoring and seeing how things go, as well as seeing if he can drink more fluids to get him off IV fluids. Fingers crossed things go well today and we can go home tomorrow! 

This hospital trip has been a tough one for Eric with the vomiting, feeling better  and then worse again, and isolation in our room, but Eric is so tough and continues to amaze me every day. He has always been a kind kid, but when we were getting ready to come to the hospital on Tuesday night, he wasn't worried for himself, he was worried for his brother since Daddy was at work and he'd be alone. Minutes later, mid vomit, he says "and what about Millie?" Despite everything that he is going through, he remains so compassionate. 

Pics today are not of Eric since its been a rough go; instead, another pic of the giraffe who came to see us again and the view from my "bed" - not too shabby if you've got to be stuck indoors. Finally, a pic of the crocuses we saw on our walk today and the Starbucks gift card we got from the hospital for Valentine's Day, just because its cute! 

Groundhog Day (the movie)

We're in the hospital AGAIN!!!

Today was supposed to be Eric's weekly check up in clinic as well as an appointment at Respirology. However, last night just before bedtime, he was very hot and very cold at the same time so I checked his temp and sure enough, he had a fever. After making arrangements for Joel (Thank you Jolie!) because Chuck was at work, I threw some things into a bag and drove Eric to BC Children's Hospital. The ER was packed and I am so glad that the oncologist calls ahead for us and we get shown straight into a room in the ER. Sometimes it pays to be immune compromised??? The ER doc and Oncologist showed up to chat with us at the same time. They agreed to do blood work and start fluids and IV antibiotics while waiting for the results of the bloodwork. Unfortunately, the first nurse missed the correct location when attempting to access Eric's port. Luckily, a nurse who used to work on the Oncology floor and now works in the ER was on shift last night and she was able to access it no problem. Because when you have a fever, a headache, and you are vomiting, the last thing you need is a bunch of pokes. We definitely don't take for granted the skills of the nurses on T8 (the oncology floor) who can probably access ports in their sleep! (Not that the nurses in the ER aren't skilled; they can probably do peripheral IVs in their sleep.) 

Just before 1am Eric was admitted upstairs, but unfortunately, T8 is FULL so we're on T7. Since I am not a big fan of the hospital in general, I am not sure I realized what a comfort T8 is. It really is nice knowing the staff and routines and where to find the coffee and warm blankets! 

Eric still has a fever and his tummy is quite upset, but no vomit so far today *fingers crossed* We don't know the cause of the fever yet, but blood cultures were taken last night and they're going to do a nasal pharyngeal (brain tickler) swab later today, so that will be fun, but maybe we'll get some answers. Unfortunately, we'll also get isolation. 

I took an intermission from writing for Eric to move upstairs - yay! Just walking down the hallway and saying hi to all the staff I know (and saw last week...) is such a relief. 

Eric has had some Tylenol for his fever and is feeling a bit better for the moment; he's chilling in bed and watching Netflix. The fluids, antibiotics and antiemetics continue around the clock. Additionally, his platelets are down to 18, so he'll have a platelet transfusion this afternoon. "Normal" platelet counts are upwards of 200, but as an inpatient, as long as he isn't actively bleeding, they'll let the platelet count drift down to 10 (!!!) but you need minimum 50 for surgery. 

Fingers crossed he can kick the fever and get some rest and be feeling more like himself soon! Between hospital visits, he did make it for a part day of his school field trip to Grouse Mountain and really enjoyed the skyride. Pic below. 

Clinic Check Up

Eric had a check in at clinic today. I thought for sure he would need blood as he woke up with headaches the last two days, but nope! His hemoglobin went from 86 on Sunday to over 100 today, all by itself. He did get fluids though, since lack of hydration could be causing the headaches. Unfortunately his ANC (Absolute Neutrophil Count - germ fighting white blood cells) is still zero, so his doctor says no school at least until his check up next Wednesday. However, Eric is allowed to go on the class field trip tomorrow to Grouse Mountain. He has to ride with me, and its no longer snowshoeing since there is no snow, but he's very excited to go on his first ever field trip! 

Next steps: Eric is still taking this new (to him) oral chemo, Venetoclax, for another week and a half and will have a bone marrow biopsy after that to check in on how this treatment combo has worked for him. The biopsy will likely be 2 weeks today, give or take a few days.

Pic from outside the hospital this morning. 

HOME!!!

The doctor let us leave about 5:30pm today! Eric had almost 24 hours of the oral antibiotic and is doing just fine! We are so happy to be able to sleep in our own beds tonight. Eric is still neutropenic so won't be able to go to school until I talk to his regular doctor. However, I'm still planning on him going on his class field trip on Thursday. Here's hoping it snows at Grouse this week so the kids can actually go snowshoeing 🤞

Not Home

Eric has been fever free for (more than) 48 hours and his blood cultures were clear for 48 hours, but we aren't at home! Eric's ANC (Absolute Neutrophil Count) dropped from 0.3 yesterday to 0.0 today. Neutrophils are germ fighting white blood cells. The doctors weren't too thrilled about letting us go when they were 0.3 and today definitely didn't want us leaving. Given Eric's current treatment it is not surprising that his ANC is 0, which puts him at risk of getting very sick, very quickly so they like to have eyes on him. Additionally, since he had the fever he's been receiving IV antibiotics which is good at wiping out everything. The concern is that with his neutrophils low, if he switches to oral antibiotics, there might be something lingering in his body that jumps back up and makes him sick again. I am fairly confident the fever was caused by the ear infection that won't happen, but the doctors here are very cautious. A good thing, I suppose. So they are going to switch his IV antibiotics to oral and monitor him in hospital for another day or two - and hopefully no longer, and hopefully he doesn't spike a fever. 

In the meantime, we did get a day pass for today at least, so we were able to be home for Joel's birthday party. He had 7 friends over, which means 8 pre-teen boys in the basement; it was LOUD! Eric was able to play outside with Kianna and Daimon and I was able to have a bath in my tub and snuggle Millie. On the way back to the hospital, Eric declared he was going to have a car nap and then said "but I'm a chatterpants and I need to tell my mouth to zip it!" We arrived back at the hospital around 8:30pm and we've left the house - and the mess - to Chuck, Joel and Millie. 

Pics of Joel with his ice cream cake tonight and of the Lego Creative figures that Eric built in the hospital yesterday. 

Whip Lash

Joel's birthday is not off to a great start. Wednesday night, just before bed, Eric started complaining of a sore ear. I gave him some pain meds and put him to bed, but when he woke about 12:30am, he was burning up. Since he's immune compromised, fevers can be serious business, so I called the Oncologist on call, and, as I expected, he told me we had to come into the hospital. I threw a few things together, woke up Grandma to let her know we were leaving, and we arrived at the hospital before 2am. We were shown into a room immediately and saw the Doc quite quickly as well. No surprise that Eric has an ear infection. Unfortunately, between the poking and prodding and chest x-ray, Eric didn’t get too much sleep. I spent the night in a waiting room type chair beside his bed, so I didn’t get a single wink! They started IV antibiotics in the ER, and we were officially admitted upstairs about 6:20am for more poking and prodding. Eventually Eric got a little more sleep, and I called Joel to wish him happy birthday. His dad is out of town, so Grandma, Granny, Joel, Eric and I were planning on celebrating at White Spot tonight. Grandma and Granny are still planning to take Joel out and now he gets to bring a friend as well.

As I ran out of the house in the middle of the night taking the only remaining vehicle, I realized I was leaving Grandma stranded. Thank you, Kristy, for driving her to the hospital this morning to pick up my car! 

Eric is resting comfortably now. We both slept through Frozen 2 this afternoon, and then Eric watched it, and then he had another nap. He hasn’t had a fever since about 5am. Fingers crossed that continues since we aren’t allowed to go home until his blood cultures have been clear for 48 hours and he’s fever free for 48 hours. We’re hoping to get home Saturday before Joel’s birthday party with his friends. What was I thinking letting him invite SEVEN boys over?!?!

We were only home from the hospital for two days; I feel like I've got whiplash being back here again so soon. Pic of Eric resting comfortably.