Weekly Check Up Monday, December 29 - Part One

Yesterday in the clinic when Eric was asked about his Christmas, he said it was amazing, I was sure relieved (and surprised) to hear that because it has definitely not been amazing. 

There have been amazing moments, but also really hard moments. Eric's headaches have been increasing and the pain is intolerable. The pain meds work, but the headaches come on so suddenly that they usually get worse before the meds kick in. Eric has a pretty high pain tolerance and these are leaving him screaming. 

We managed through Christmas and Boxing Day and the weekend and Eric had an appointment scheduled at clinic for Monday the 29th. He'd been ok in the morning, but the second he got in the car, the headache hit. He said he wanted to get admitted so they could make him better. Eric's Oncologist is on vacation this week. They take turns over Christmas so half his team was off last week and half this week. When we arrived they asked immediately about his headaches and made Eric happy by suggesting that we admit in order to investigate. He had his regular platelets, plus blood as his hemoglobin was quite low, which on its own can cause headaches. Then he also had a head CT, which looked normal. We got a room on the inpatient side (with a fold down couch/bed - yay!) and Chuck brought us in some necessities, like my mattress topper. They had an LP (lumbar puncture) planned for Tuesday morning so Eric would have to fast because it is a sedated procedure. He chose a cucumber roll and spring rolls for dinner before fasting. His head was hurting a little, but we gave him a boatload of melatonin and knocked him out for the night. Unfortunately, due to the headaches, the doctors ordered neuro checks with his vitals every 4 hours overnight, which includes shining a light in his eyes. 

Tuesday morning, Eric's nurse said he would go into procedure about 11am. He was last due to the cold (which I forgot to mention; we all caught Joel's cold over the weekend.) Luckily they actually came to get him about 10:30am before he'd even had time to get hangry. The LP went fine, but Eric did not wake up well from the sedation. That was the first time in a couple of years that he has woken up so upset and angry and I was not prepared for it. 

In the afternoon, we were hunkered down for the long haul when a doctor came in and said the preliminary results of the LP looked good (no leukemia blasts seen in the spinal fluid) and she was just waiting for the official results and then would discharge us. WHAT?!?! That came out of nowhere. She said since Eric isn't having any headaches today and since his CT and LP were both fine, we were good to go home and check back in at clinic on Friday. She did add that when they did the LP his pressure was a bit high so that could be what is causing the headaches, but it should be relieved a bit with the LP and we can follow up with our team Friday. She came back about an hour later with discharge papers. The bad news was I didn't have my car since my mom had driven it home after we were admitted! I packed up our stuff and Chuck came and got us. We got home about 7pm and, aside from being exhausted, Eric is feeling great and we're happy to be home earlier than expected. 

Weekly Check Up Wednesday, December 24

We had hoped to be nice and quick at the hospital today; get our platelets and run, but no such luck. Eric was in such a good mood when we arrived, but his nurse missed his port on the first try and he cried. I got him chocolate milk and she got him LEGO, but he was not a happy boy after that. Platelets were pre-ordered but slow to be ready. It did give lots of time for Grandma to arrive from the airport, and to have a good conversation with Eric's Oncologist. 

Biopsy results are, unfortunately, not giving us the clear answer we were hoping for. The mutated cells are down to 83% from about 97% at the last biopsy. Additionally, donor cells are up to 16% from about 8% at the last biopsy. This is all good news. However, the leukemia blasts are also up to almost 30% which is not so good. Eric's doctor has dug into the info a bit and discovered that an initial increase in blast count has occurred fairly frequently with this med and then it leveled out over time. He doesn't want to give up yet, hoping to see the improvements continue and the blasts to decrease. Though he has acknowledged that we're dealing with a lot of uncertainty here. Either it is working. Or it is very, very not. But we don't know which. We will continue to monitor the blast count in the peripheral blood, which is up to 1.5 today, closely and make a decision sometime after the holidays. Also, due to the difficulty with the last biopsy, he wants to hold off on another biopsy until we absolutely need to go ahead. 

Since our last visit, and unexpected admission, Eric has been continuing to have headaches. They come on quickly and quite acute. It has me a bit worried. His doctor did a good exam today and everything is looking pretty good, but he said if these keep up we might need to do a head scan and LP (lumbar puncture) to rule out the cancer having crossed the blood-brain barrier. For now, he says to just have a good holiday and we'll worry about that later.

Meanwhile, Joel, who was sick a couple weeks ago and then better with just a lingering cough, seems to be sick again. He is feeling miserable and has a low fever. We were supposed to go to a Christmas Eve Open House tonight but Joel is sick and Eric is cranky after a long day at the hospital, so I think we'll be taking it easy tonight. Wish us all a better day tomorrow! 

Merry Christmas to all our family, friends and neighbours. Thank you all for supporting us as we continue on this long and difficult journey. We wish you all a very happy and healthy Christmas! 

Weekly Check Up - Part Three - Friday, December 19

I didn't expect a Part 3, because I didn't anticipate Part 2 yesterday, but here we are. I said we were going to be boring yesterday afternoon and evening, but sadly, we were not. Eric's nose started bleeding. It was kind of chaos as we moved from the clinic over to the inpatient side with Eric's nose bleeding. He was getting a dose of IV TXA and his Nurse Practitioner ordered platelets, but I was concerned that he'd had Cetirizine too early in the day to ward off a reaction, so I was asking for Benadryl. All chaos, but we got settled; Eric got his Benadryl and platelets and his nose stopped bleeding. We got some dinner, late, and chilled for a bit.   

Eric slept well; I did not on a couch bed that didn't fold down. In the morning, his nurse said they'd take him for his biopsy at 10:15. That seemed odd since they don't really even build the list until everyone is in, plus they can't start until the anesthesiologist shows up which is unpredictable. Anyhow, they ended up coming to get him around 10:40, which was okay but he was starting to get a little hungry and annoyed that it was later than he'd been told. In the meantime, the doctor stopped by for a check up and said all of Eric's blood work is still looking "normal." 

Once Eric was asleep (sedated), I went to get him kettle corn, chocolate milk, and a Starbucks grilled cheese for when he woke up. But he didn't come back! Usually biopsies are really fast. Eventually the Resident who was in the procedure came in, and then the Dr who did the procedure, who we know. They came to give me a heads up because they had some challenges in the procedure. Eric has had all but one of his biopsies on his right side and they were having trouble so had planned to switch to the left side this time. They were able to get a good sample of marrow, but they were not able to get much aspirate, which is part of the procedure, from the left side. So they decided to go in and try on the right side. They also weren't able to get much aspirate there. So Eric has basically been biopsied on both sides and they're not even sure they got enough aspirate for the tests. They let Eric's Oncologist know, but we won't hear anything until next week. In the meantime, Eric's back is killing him. The procedure doc suggested that we should be liberal with the pain meds and we are, but it's still really hurting. 

We were able to get out of the hospital, so at least he gets to be as comfortable as he can be at home and hopefully he is able to get some sleep tonight and isn't in as much pain tomorrow. 

We're back in clinic on Wednesday/Christmas Eve for next week's check up and platelet transfusion. 

Weekly Check Up - Part Two - Thursday, December 18

This part 2 is coming a day earlier than I had anticipated. Eric has his biopsy scheduled for tomorrow. After yesterday's debacle which resulted in a 12 hour power outage and Eric's school being closed for the day, he was excited to go in today for his Christmas concert and class party. I showed up at the school at 9am for the performance and Eric came running to me, crying. His head was hurting so badly that he couldn't do the performance. We stayed and watched his class sing their one song and then I took him home. We left everything behind because he wanted some pain meds and to lie down, but to come back for the party when he was feeling better. Eric is not allowed Advil ever and generally not supposed to have Tylenol either. He gets morphine or hydromorphone for pain. However, they don't work as well for a headache, so sometimes we are allowed to give Tylenol if he has no other symptoms and we check his temperature first. I was planning to do that, but called Eric's Nurse Clinician first just to make sure because of this new medication that he is taking. I figured worst case scenario they were going to tell me to give him hydromorph instead of Tylenol. But I was wrong. There was a worse case scenario. They asked us to come into clinic. They are being super cautious because of Eric's new med, so want to check him out. I asked if we should pack a bag and they said yes. Luckily I already have a bag packed so I just threw that in the car. I did try to give him a dose of Tylenol, but he threw it up, so I gave him an anti nauseant instead. We stopped at the school to grab his stuff and headed to the hospital. 

At the hospital, they accessed Eric's port and drew blood. Since then we've had a steady stream of people in his room. He got vitals which were normal and his NP did a quick neuro exam to make sure everything was "balanced." The NP also ordered a nasal swab - nooooooo!!!! - just to rule everything out. The nurse went way up into brain tickling region just to make sure she got a good swab, since the point is to rule things out. I appreciate her thinking, but not Eric's screaming. Poor kiddo. That one really hurt. It also means he is now on contact precautions (isolation) even though he has no symptoms of a virus. While we wait for the bloodwork, the NP has ordered hydromorph to fix Eric's still pounding head and a giant fluid bolus in case he's dehydrated. Hydromorph makes Eric very chatty so he is currently being very entertaining.   

The NP initially told me that they're going to test everything and if everything is normal we can go home. However, if anything is even slightly wonky, they will admit him and start steroids. This is the treatment for one of the scary side effects from his new medication. She has been back since to say that Eric's Oncologist has given strict instructions not to hurry us out of here. 

Eric's NP has come back again, this time with his Oncologist and Nurse Clinician. Eric is usually pretty grumpy with his Oncologist. I think he's just gotten sick of weekly exams for more than 3 years and his (very wonderful) Oncologist bears the brunt of that. Eric is maybe 45 minutes into his dose of hydromorph when the team shows up at the door and Eric says "Hi Jacob!" Jacob, Eric's Oncologist, was bent over laughing at being greeted in this way by Eric. 

They came to tell us that Eric is, in fact, going to be admitted tonight. Everything checks out great on all the tests from the day and his blood counts are pretty similar to Tuesday, with blasts remaining at 1.0 so that is actually encouraging. They assume the headache at a time that they are watching closely for side effects is just a coincidence, and are keeping us only out of an abundance of caution. Also since he has his biopsy appointment at 8:30am tomorrow, I'd almost (*almost*) rather stay overnight than fight rush hour tonight and again tomorrow morning. 

Eric is no longer in pain and all the tests are done, so now we just wait for our room over on the other side (inpatient side of the Oncology floor) and we plan to be very boring this afternoon and evening! 

Weekly Check Up - Part One - Tuesday, December 16

Over the weekend we attended a Starlight event at Toys R’Us and then had a nice family brunch at Denny’s after. The kids love the hot chocolate. Clearly, they don’t get out much.

 

Eric also had a play date and birthday party. He pushed through the weekend, but Monday morning his headache was too bad to go to school. He lounged on the couch for most of the day. Tuesday morning when I woke him up to get ready for his appointment at clinic I said, “time to go get some blood!” and he gave a sleepy “yay!” We had to have an early-ish appointment because he had an endocrine appointment booked for 1:45 and we needed to get both blood and platelets in first. Both had been pre-ordered, but the platelets were ready; whereas, transfusion medicine needed a group and screen before they would prepare the blood. So we got started with the platelets pretty quickly and the blood was ready not too long after the platelets were done. Despite how smoothly everything seemed to flow, we weren’t finished until 2pm. The unit clerk called endocrine to let them know we were running a little late and it turns out endocrine was running late too, so we got in there about 2:15 and didn’t leave the hospital until after 3pm when it was very, very rainy, and dark, and traffic was terrible. We were at the hospital for 6 hours and had 2.5 hours of driving. It was a very long day.

Additionally, I had a somewhat concerning chat with Eric’s Oncologist. His blast count jumped up to 1.0 in his peripheral blood from 0.4 on Friday. It is possible that the med is working and his marrow is making healthy cells while at the same time the unhappy part of his marrow is creating these blasts unchecked by a traditional chemotherapy. However, it is also possible that the med is not working at all and his disease is surging. Eric’s doctor is considering all possibilities but is concerned enough to bump up his bone marrow biopsy. It had been planned for next week but will now take place on Friday. He wants to get a look in the marrow to have a better understanding what is happening. This way we should also get some preliminary results before Christmas and can make a plan for after Christmas, instead of waiting for the results over the holidays. Honestly, waiting for results in either scenario sucks and I wish we could celebrate Christmas without any of this worry, but that hasn’t been our reality for a long time now. On the plus side, with Eric’s transfusions yesterday, he is back to feeling good and ready for a couple more days of school before the Christmas break. Of course, we woke up without power this morning and the start of Eric’s school day has been delayed. Surprisingly, Joel’s school has power and he headed out on time this morning.

Weekly Check Ups Tuesday, December 9 and Friday, December 12

Eric's Oncologist wants to keep a close eye on him with this new treatment, so we are in clinic 2x a week for the next little bit, at least. We went in Tuesday, which was a day earlier than our regular platelet schedule. Turns out that was a good thing since Eric's platelets were already down to 7. His white blood cell count is almost normal, which is super weird (compared to what I am used to), but we still don’t know which of the many possible reasons explains it. We saw Eric's NP on Tuesday and she said just keep on as we have been. The bloodwork all looks fine, and, in fact, Eric's liver numbers look a bit happier than they were when he started the new med. The ECG from Friday also looks good. 

Outside Valet in the BCCH parking lot

Eric is still feeling really good and went to school Monday, Wednesday and Thursday, the days he wasn't at clinic. He also has a few make up swim lessons on the books and we were able to squeeze in 2 this week. Unfortunately, for Eric, it was butterfly week, and his instructor loves butterfly. Eric is getting better at it though; it's all about the timing. 

Friday morning Eric had a session with his online teacher in the morning and then we went straight to clinic from that. We arrived about 20 minutes before his appointment and were still able to squeeze in an ECG at the Heart Center first. The popcorn guy was back in the lobby and Eric insisted that he needed to try the rainbow popcorn. Eric's platelets had been pre-ordered, but weren't ready when he was accessed. Another nurse did tell us a funny story though. The night before they got a call at 5:45pm saying Eric's platelets were ready. They were so confused. I guess the pre-order went in yesterday. Unfortunately, it appears the blood bank gave them to someone else that evening! Eric's doctor is on service this week, in charge of the inpatient ward, so very busy. We often don't see him in clinic on these weeks. Instead we saw an Immunology Fellow who is on rotation with the BMT team for the month. He came in and had a chat and did Eric's exam and then he came back later, once Eric's bloodwork was back, with another one of the Oncologists who we've seen before. Everything is continuing to look pretty stable; though a couple points of interest. Eric's platelets were 19. We were a day earlier than our regular schedule so you would expect them to be a little higher, but they weren't on Tuesday. As a one off, this means nothing at all, just an interesting observation. Also of note, Eric's hemoglobin is down to 86. His last blood transfusion was less than 2 weeks ago and it looks like he'll need blood again on Tuesday. Hopefully we make it through the weekend with Eric feeling okay, but he was exhausted Friday evening after his appointment. 

We've found a bit of a routine with Eric's new med and not being able to eat for 2 hours before and after, though he does get upset about it on occasion, like last night when I put out some Christmas chocolates. It is also going to require some planning to get him dinner before 6pm when Joel has Cross Country until 5:30pm twice a week. So far we've been able to manage with weekend activities like the early movie last weekend, with a little planning, but it is definitely harder when not on our regular schedule, so the Christmas break might be a bit of a challenge.

Next week we are back at clinic Tuesday and Friday, plus have an Endocrine follow up appointment on Tuesday afternoon.  

 

Weekly Check Up Friday, December 5

It is so nice to be home from the hospital. I find it a bit exhausting there with long days and not the best sleep. Grandma was visiting so she cooked for us all week and I really got to rest. Eric and I took Tuesday completely off everything and didn't even get out of our pjs. Wednesday Mom and I went Christmas shopping and Eric went back to school. He only made it until a little past recess though when he called to say he was feeling pretty nauseous. He came home and had an anti nauseant and played video games the rest of the day. He seemed to be feeling fine the rest of the day and woke up Thursday morning ready for school, so maybe I just sent him back to school a little too early. Thursday he made it through the whole day of school and no nausea. 

Friday we were back to clinic for a check up. Eric's team had asked us to go to the Heart Center for an ECG first, so we headed there, but right when we arrived there his nose started bleeding. It is interesting trying to get an ECG with a bleeding nose. He is supposed to have his arms relaxed by his side, so I held his kleenex on his nose for him. Luckily it's a quick process. Still bleeding, we were making our way over to clinic when Eric insisted that we must buy popcorn from the vendor in the lobby. He had a difficult time choosing between all the different flavours but in the end went with sweet and salty. In clinic Eric put away half a bag of popcorn while waiting for his nurse. Interesting how he can't take his meds when he's bleeding, but eating popcorn is no problem. Eric's NP just happened to walk by his room while we were waiting for the nurse; she saw he was bleeding and went to order TXA for him. While we were debating between oral and IV TXA, Eric's nurse accessed his port and his nose stopped bleeding. Since the platelets had also arrived right at that time, we decided just to get the platelets in and not worry about the TXA, unless his nose started bleeding again. 

We were on track for a pretty speedy visit when his nurse came into the room halfway through the platelet transfusion to do a group and screen. Bloodwork was back and Eric's hemoglobin was low so his team had ordered a blood transfusion. Both Eric and I were surprised, and not prepared for a long visit! His hemoglobin had been over 90 on Tuesday and was now down to 75. 

During the blood transfusion, Eric's Oncologist came in for a chat. It was a good chat, but the long and short of it is, we don't know anything. It's too early to tell if the new med is working. Eric's white blood cells counts are up; his neutrophils (germ fighting white blood cells) are up to 1.0. We haven't seen that number in over a year. Unfortunately, circulating blasts are also up a little (0.3-0.5), but since that is not combined with his white blood cells shooting off the charts, his disease probably isn't getting worse. Or if it was, it's at least stable now. Probably. Maybe the white cells are up just because this treatment works differently than others and isn't suppressing them or maybe its an indication that the med is working and he has some healthy cells in there. Maybe, probably, possibly... We just have to wait and see. My favourite thing *eye roll* The Oncologist is planning a bone marrow biopsy a few days before Christmas, which will be 30ish days into treatment. Though the holidays may delay the results. In the meantime, Eric is feeling good and that's certainly a win. 

On Saturday morning we were invited to a private Starlight screening of Zootopia 2. It was way too early in the morning, but the trade off is that we get the entire theater to ourselves. It was only Starlight families and they had the movie playing on 4 screens. Santa was there and so were some Disney animators sketching everyone's favourite Disney characters. We had popcorn for breakfast, enjoyed the movie and got some cool swag afterward. 

Saturday afternoon we decorated our Christmas tree and Sunday morning Eric had swimming lessons. That is it for us for the weekend. Joel seems to have caught a little cold, so he's taking it easy while the rest of us hope, pray and cross everything that Eric doesn't get the cold and end up back in hospital. Eric's Oncologist still wants to keep a close eye on him, so we're back at clinic Tuesday and Friday next week. 

Hospital Admission Days 6 - 8

So far, so boring! Just the way we like it at the hospital!

Day 6

Eric's white counts are up a little more today, but only a little, and blasts are the same. The Oncologist responsible for the ward this weekend and through next week is one we know and love. She is the Medical Director for Camp Goodtimes and also works closely with Eric's Oncologist. She stopped by this morning and said it is too soon to tell anything. We have to let this new med do its thing for a bit until it settles out and then we might have some idea of what's going on. In the meantime, still doing well, feeling good, electrolytes still within normal range. She hadn't seen his ECG from yesterday so was going to see if she could find it. 

The Child Life Specialist who works on the weekends made waffles this morning in the family lounge. Eric says this is the best weekend ever to be in the hospital - McDonald's yesterday, waffles today and smoothie Sunday tomorrow. Chuck and Joel also came by for a visit today and there was a Pet Therapy Pet Stop in the lobby with 4 dogs. 

Day 7

White blood counts down a bit this morning. Doctor said everything still looking good and nothing planned for the day. WCK (West Coast Kids Cancer Foundation) was in the Family Lounge today blending up fresh smoothies for Smoothie Sunday. I love WCK; their programs hit the mark and make a positive impact on us. No one needs a fresh smoothie more than families trapped in the hospital over the weekend! Ashley, the weekend Child Life Specialist came by and suggested a challenge. Eric would hide 2 scavenger hunts and Ashley and Eric's nurse, Ella, would race to see who could complete theirs first. It was so fun and entertaining. Ashley won, but she bribed Eric with a new Lego set for a hint. 

Eric downloaded a new game - Pal World - on the Xbox and has been so busy playing that he still has an untouched Lego set. At least it keeps him occupied! Meanwhile, I finished a 1000 piece puzzle. 

Day 8

The doctor was in this morning; we'd never met her before but she's quite lovely. Eric's blood counts are pretty similar to yesterday, but blasts down a little bit, which makes me happy. She also said the ECG from Friday looked good. So we're going home today! Eric does have to have a platelet transfusion first and they also have to find his new medicine to send home with us. In the meantime, Simba the Pet Therapy dog came by for a visit.