Wednesday Check Up

Eric had a check up at clinic today. His numbers are holding relatively steady from last week. The dr says this is good news; we know from the numbers that he isn't getting worse. Though, he did need another platelet transfusion today, which made for another long day. The pet therapy dogs did a costume parade this afternoon which was adorable. Unfortunately, Eric missed it because he was bust having a Benadryl induced nap. 

He's been struggling with quite a bit of nausea this past week. We're doing our best to control it, but it sucks! He did go to school for a couple hours on Monday and Tuesday, but just isn't well enough to make whole days. 

Exciting news: the BCCHF Pet Therapy calendar is going to be released on Friday, November 1. It is available at the hospital Gift Shop for $25 plus tax ($28 total). Eric and Edward the Bunny are the stars for the month of April, but the whole calendar is truly spectacular. If you would like a copy, but aren't near the hospital, I would be happy to pick one up for you, just let me know. 

Eric is super excited for Halloween tomorrow!!!

Biopsy Results

Eric had a clinic visit yesterday, Friday. It was a looong day. Usually we go to the lab for bloodwork before his appointment, but at 9:50am the line up was not just out the door, which we've seen once before, but also down the hall, which we've never seen before. Eric took one look and said NO. It was 50/50 he'd have to have his port accessed for a transfusion anyhow so we decided just to go to clinic and and have his port accessed for bloodwork. We stopped at Starbucks on the way so Eric could get a Milk 2 Go Chocolate Milk, his favourite Starbucks beverage! He also wanted to try the charcuterie snack box, but rejected it, along with pretty much everything else he tried yesterday. 

We hadn't put Emla on his chest before we left the house so had to do that at clinic and then wait for it to numb before he could be accessed for bloodwork. His doctor came by to let us know that all of Eric's counts are down from the last bloodwork which was done Monday and that he recommended a platelet transfusion. Luckily they had the fancy platelets that Eric needs due to his allergy on site so they were able to start the pre-meds right away followed by the platelets. Unfortunately, it was still 3:20 before we left, so traffic home was already pretty heavy. We got home at 4:30 giving us an hour and a half to rest before Eric's school Halloween Dance. 

Eric is the one with 2 heads 🤣

We did also receive the results of Eric's bone marrow biopsy from October 16. The marrow is showing 17-20% blasts (not great), 78% of the abnormal cells that mark his disease (pretty bad) and 52% donor DNA. Obviously we'd like the donor DNA to be 100% as we've been seeing for the last 6-8 months, but the fact that there is still donor DNA is hopeful. The hope is that the current treatment will suppress the bad cells and allow the donor cells to make a resurgence, which is what happened last time. We are hopeful because Eric's donor cells did win the fight with his bad cells last time. Today is day 10 of the 28 day cycle and we won't know if it is working until Eric has another bone marrow biopsy at the end of this cycle. While this treatment is more aggressive than what he has been receiving, we hope that Eric will tolerate it okay and be able to attend school and other activities. For the most part, he is not nauseous, but his appetite has taken a serious hit. We are currently working to balance his meds to minimize the side effects. 

Today we are off to the pumpkin patch, back to school Monday and next clinic appointment is Wednesday. 

Discharged & Beads of Courage

Eric was discharged yesterday afternoon after his last dose of IV chemo and a platelet transfusion. We got home about 4pm and were both absolutely exhausted. Chuck and Joel weren't home to look after us, but luckily, a lovely neighbour ordered us pizza for dinner. 

Eric is still taking his oral chemo, at a substantially increased dose, for another 23 days. He won't be back at school this week because he needs time to rest and its a short week anyhow. We're doing a bit of school work at home this week and our big job is to clean his room - send help!!!

The hospital has a program called Beads of Courage where Eric gets beads for all the difficult things he has to do - pokes, tests, chemo, transfusions, hospital stays, etc. I caught up on his missing beads just our last hospital stay. We strung them this morning and took a picture stretched down the hallway. Its 15-16 feet of beads and actually isn't even complete. When we were in for long stays, Child Life suggested we do a bead a week instead of for each night. Additionally, I didn't get beads for his 28 day cycles of oral chemo, just the IV doses. 

That's a lot of courage! 

Inpatient Day 4

We woke up this morning after 3 nights spent in hospital. Eric immediately started building Lego and is on his 6th set since we got here. Thank you very much to the people who sent Lego to keep Eric entertained; it has been amazing. So far we've been able to stay off contact precautions (isolation) which is a huge win because it means we can get out of our room and Eric has been able to wander the halls looking for Pokémon. One of our amazing Child Life Specialists hid about 50 Pokémon stickers around the ward for Eric to find and then Eric hid some for me to find and when I found them all, he did it again, but harder! He is also spending his time tormenting the staff with his cockroach toy, which is super creepy and moves all on its own. He even left a vaguely threatening note to his night nurse the first night here to warn her. 

Get ready and good luck. Hahaha :) Watch out. 

Initially on starting the new cycle of IV chemo, Eric had some digestive distress, and then upon starting the new cycle of oral chemo, he had some nausea. However, it seems to have settled out relatively quickly and with some anti emetics to manage nausea, he's feeling pretty good. However, his dose of oral chemo will increase today, so we will see what happens next. 

It looks like we might actually be able to go home tomorrow. I had assumed we'd be here for 7 days of IV chemo, but his doctor is actually only doing 5 days. However, he's also quadrupled the oral chemo dose, so I'm not counting on being able to go home tomorrow, depending on how Eric responds to the increase. 

Luckily Eric was feeling well enough yesterday that we were able to get a day pass and Eric could attend a pizza and movie party at a friend's house in the afternoon. He was really looking forward to the party so it was nice that his doctor was able to make that happen. 

Getting a pass yesterday also allowed me to make it home for my appointment for my flu and covid vaccines. Since Eric can't be vaccinated, it's really important that everyone around him is vaccinated in order to protect him. Chuck and Joel also got vaccinated yesterday.

We don't have the complete biopsy results yet, but hope that we will by his clinic appointment on Friday so his doctor can round out his plan for moving forward and discuss with us. 

Bone Marrow Biopsy

Eric had his Bone Marrow Biopsy this morning. The worst part for him is the fasting. Usually the procedures start between 9:30 and 10am, but you never know how many people are on the list on any given day, or their ages, since they start with the youngest. Luckily, there were only 2 people on the list today and the other one was a teenager so Eric got to go first! The procedure went well and he woke up nicely. Upon waking he always wants a chocolate milk and then dug into the bag of snacks. 

His bloodwork today is showing his platelets are still low, and his hemoglobin, white blood cells and neutrophils are starting to fall as well. This is a sign of unhealthy marrow. There are blasts showing in the bloodwork as well, quite a low number, but any is not good. The results of the biopsy will come in over the week or so. 

I received a phone call from Eric's nurse clinician yesterday and she advised that his doctor wanted to start another cycle of 5Aza and Venetoclax immediately and he'd like Eric to be inpatient for it to keep an eye on his counts and how he responds. These are the 2 treatments Eric has been receiving off and on since January-ish. Eric will be admitted to hospital on Thursday for 7 days, 6 nights (and hopefully no more!) He is very pleased that he gets to go on his class skating field trip tomorrow morning before we have to go into hospital.

People always ask how they can help and that's such a hard question to answer. Generally just checking in on how we're doing is nice. Additionally, the hospital is a pretty expensive place to be as they only feed Eric, not the adult with him, and he doesn't like the food, so Door Dash and Starbucks gift cards are always welcome. Entertaining Eric for long days in the hospital is really important; he loves Lego and it keeps him entertained for hours at a time. Thank you to everyone who is thinking about and praying for him. 💕

Bad Blood (Eric's Version)

The title because Eric loves Taylor Swift. Does anyone have a hook up for tickets? We tried to get 2, but were unsuccessful :( 

Eric didn't have to go in for a check up this week, but his dr asked us to go to Lifelabs to keep an eye on his bloodwork since his platelets were so low last week. We went Thursday after school. On Friday late afternoon his doctor called and let us know that some blasts had shown up in his bloodwork. Additionally his platelets were down again and now his hemoglobin was down as well. All bad news. His doctor asked us to go into the hospital on Saturday (yesterday) for bloodwork. He said as long as Eric was feeling well we should be able to go home, but to pack a bag just in case. He also advised that Eric would need a bone marrow biopsy early next week. 

Eric and I went into the hospital yesterday. The clinic is closed on weekends so we went into the ward where he gets a comfy bed, I get a comfy recliner and we had a beautiful view of the colourful fall trees. And thank heaven, because we were there for more than 8 hours! Since we were going for noon, I had asked Eric if he wanted me to bring hotdogs to the hospital for lunch or if he wanted to stop at McDonald's on the way in. He chose McDonald's but I had a complete brain fart and forgot to stop on the way there!! So I had to order Door Dash to the hospital. 

We use emla to numb the port site for access. We generally put it on before we leave the house and its perfectly numb when we get to the hospital. Unfortunately yesterday our nurse was busy with another patient when we arrived and the numbing must have worn off because Eric screamed, and usually he's really good about the port access. To add insult to injury, she missed the port. This happens in the ER all the time because they aren't as experienced but almost never happens on the 8th (oncology) floor. Eric does seem to have a difficult port; its quite deep so more difficult for them to find and grasp. Of course the McDonald's arrived at the same time as our nurse so Eric had to wait until after the attempted access to eat his lunch and the fries were cold - this might have been the biggest injustice of yesterday. 

Anyhow, after the failed port access, we decided to put on more emla and wait an hour before trying again. New nurse and she got it first time, but now it was 2:30 before the bloodwork was drawn and sent to the lab. The dr came to check in at 3 and said she'd go to the lab to check on the bloodwork. She came back at 4pm to say that Eric's platelets were now 23. Since he wasn't bleeding, it was safe to send us home, so up to us whether or not we wanted to do a transfusion. I opted to do the transfusion because with the bad cells showing up, it isn't likely that the platelets would come up on their own, so he will need the transfusion sometime soon anyhow. Additionally, I was worried we'd go home and he'd get a nose bleed over the long weekend and we'd just have to come back. Unfortunately, Eric is allergic to platelets. So he is given pre meds to counteract an allergic reaction and also given specially treated psoralen platelets. However, the blood bank at the hospital didn't have any of the psoralen platelets on site, so they had to be ordered. Eric had a nice Benadryl induced nap while we waited for the platelets to arrive. He got the platelets, had his port de-accessed, we made a pb&j from the ward kitchen and hit the road making it home just before 9pm.

A pathologist (I think that was who it was) came in to look at the blast cells, but couldn't provide any definitive information. He will need the bone marrow biopsy to confirm. This is the same thing that happened when he was originally diagnosed, since his disease originates in the marrow. His bone marrow biopsy is scheduled for Wednesday. Until then, we just wait and try to enjoy our Thanksgiving weekend. 

 

Two Year Anniversary

Two years ago today, Eric was admitted to hospital for the first time. We had an indication from his GP based on his blood work that he had leukemia. However, it wasn't until he had a bone marrow biopsy the day after being admitted to hospital that we learned for sure it was cancer, and not until the Thanksgiving long weekend that we were given the official diagnosis of MDS (myelodysplastic syndrome), not leukemia. 

Looking back to two years ago is surreal - the things we didn't know then; the things we know now that we wish we didn't. And everything we, mostly Eric, have been through in the last two years: diagnosis of MDS, and then a secondary diagnosis of AML, so many rounds of chemo, hundreds of nights in hospital, loads of blood and platelet transfusions, allergic reactions, MRIs, ECGs, EEGs, CT scans, ultrasounds, plenty of blood draws, bone marrow biopsies, surgeries, a bone marrow transplant, PRES, chronic GVHD, so many medications, relapse and, most recently, a newer drug meant for adults with a different condition to buy us some time that has miraculously caused Eric's donor cells to rebound to 100% and eliminate the abnormal cells. It has been a truly awful journey that I wouldn't wish on anyone, ever, but today, we are so thankful that Eric is strong and stable, and grateful for the community that has rallied around us. 

On Wednesday, our nurse clinician called to let me know the results of the chimerism tests were back and show full donor cells and none of the mutation that marks Eric's disease!!! They also advised that his lung function is stable compared to his last test, but we need to continue to keep a close eye on it. His function is around 90% and pre-transplant he was about 107%

Eric had a check up in clinic today. His platelets were under 100 when he had his last check up 2+ weeks ago. Decreased platelets is a known side effect of his current treatment. Platelets help blood to clot so low platelets mean lots of bruises (bleeding under the skin) and could mean uncontrolled bleeding externally. Eric is covered in big, dark bruises (and is still taking his medication) so we knew his platelets hadn't increased since last visit. In fact, today his platelets were 39. Yours and mine are likely in the 300s. Without active bleeding, they will let platelets drift quite far (10 if you are inpatient) before giving a transfusion. So today Eric's doctor chose not to give him a platelet transfusion; however, he did stop his current treatment 4 days early (24 days of 28 day cycle completed) because he doesn't want Eric's platelets dropping into the teens. Eric will have a blood test in the community (life labs, no drive to children's!) at the end of next week to see how his counts are trending and then a check up in clinic the following week. Depending on his count recovery, at that time we will decide on timing to start the next round of treatment. Eric's hemoglobin is good and his neutrophils (germ fighting white cells) are down a little from last visit, but *okay* at 1.0. The doctor did say they've been seeing colds and covid and now starting to see flu as well. 

In other news, its Millie's 3rd birthday today!