Hospital Days 3 & 4 / ?

Saturday, Day 3, was much better than the day before. No appointments or 'ologies to see and no headaches!!! Also, not a heck of a lot of light or movement which were triggering the headaches, but for now we'll be happy about no headaches. He played video games for the first half of the day and built a LEGO set for the rest of the day. He chose dinner from Boston Pizza for his favourite Bugs and Cheese and here he is enjoying it. 

Unfortunately the night wasn't quite as good. Eric woke up sometime between 2 and 2:30 and could not get back to sleep. His legs were aching and nothing worked to stop it! It was 5:30 in the morning before he finally fell back asleep. His nurse came in at 8am to do his vitals, but then left us alone and we went back to sleep until almost 10am. 

Sunday, Day 4, the morning was ok, but about 12:15, Eric pushed away his Lego, grabbed the back of his head and told me to close the blinds. We called his nurse to try and get ahead of the migraine, but it's just coming on too fast. It was only seconds later and he was screaming in pain. This time it was his stomach and legs too, as well as the head pain. His port was hep locked, so it took a few minutes to get the IV access, but at least the IV meds work faster. They're now giving him a "migraine cocktail" of meds to treat and it does work well. It took him a couple hours to recover; no longer in pain, but just to feel "normal" again. At least this med does seem to allow him to feel normal again, which I don't think was the case before. 

The rest of the afternoon has been okay. Chuck came by for a visit and to bring us a few necessities, like a weighted blanket which I'm hoping will help with Eric's ache-y legs. We had a nice dinner and Eric is chilling with a video game, which doesn't seem relaxing to me, but I'm not a 10 year old boy. I finished the show I was watching earlier today, so I'm in the market for a new one and taking suggestions. 

Fingers crossed for a better night tonight and a plan from Eric's Oncologist tomorrow. 

Weekly Check Up Friday, January 2 - Part Two/Admit

No more sugar coating; this Christmas break has sucked pretty bad. 

Eric was supposed to have an appointment at clinic today; however, we ended up coming in yesterday on New Year's Day. Eric was discharged from hospital on the 30th after more investigation of the migraines found nothing concerning and after having no head pain for the day. Unfortunately, the following day, NYE he had a migraine again and ended up spending the entire day in his bed in the dark. He also had a super bad bleeding nose and his temp was elevated, though not what is considered a "true" fever by Oncology. I thought we were going to have to go into hospital multiple times during the day and, after only getting home at 7pm the night before, I was pretty stressed. Of course, then Eric was worried about me worrying 🤦

When the migraine happened again the following morning, on New Year's Day, I asked Eric what he thought about coming into hospital. For me, this is just way too much, definitely not normal. He agreed that we needed to come in. I didn't want to wait another day to his appointment on Friday, thinking that I'd end up driving with him screaming and that we'd end up sitting for the weekend. I figured by going on Thursday, they'd be able to do some investigation on Friday, and since I'd already given him pain meds, I could time the drive to be as painless as possible.  

Since it was a holiday, we have to go into the ER, but we called the Oncologist On Call first and they let the ER know to expect us so we don't have to wait in line. In the ER, they first ordered chest and abdomen x-rays, then they did his port access and bloodwork, a bolus of fluids, and finally, a cheek swab since they haven't been able to do a nasal swab due to bleeding nose. We saw an ER doctor and then Eric's pediatrician from T8 came downstairs as well. She is the same one who did the LP on Tuesday. She mentioned that while his opening pressure was a little high, it was still within normal range, so doesn't believe that is the cause of the migraines. 

Here's Eric chilling in the ER:

Eric was admitted to a room upstairs where we learned that his hemoglobin was 73, which was shocking since he had a blood transfusion just on Monday, and that he has Influenza A, the flu. This was also shocking. We all caught Joel's "cold" and it was a bit rough for Joel but it seems pretty mild for the rest of it and it turns out it's the flu! Eric was given another blood transfusion and has started a course of Tamiflu. He's also still taking TXA 3x per day for the nose bleeds. He is very annoyed with the increased number of medications everyday. He is also constipated, (because you know, why not pile on) and was given something for that. 

The doctor's here have agreed that we need to stop Eric's new treatment. They are afraid this may be a fairly significant side effect from that treatment. As they keep telling me, we've been admitted 3x in 2 weeks for this same issue. They tell me it's just a pause, and maybe we can restart it later at a lower dose, but I am absolutely gutted. 

This morning, Friday, Eric was feeling fairly well to start the day. The doctor's have asked for an ECG and to see Ophthalmology and Neurology today, plus a platelet transfusion. A porter came to get us to take us to Ophthalmology for 10:30am. They were not ready for us when we arrived and Eric's head started hurting while we were waiting. I tried to let them know we needed to get the pictures (optic nerve) now or we were going to have to leave, but they said the tech was busy, so I asked for a Porter to come and get us. Meanwhile, Eric is screaming from the pain. We waited and waited for the Porter with Eric screaming the whole time. I can't get back to our floor through the building because it's a very weird route with lots of elevators and some spots requiring staff access cards. However, I was about ready to walk him out the front door and back in the front door of the main building because that route is easy, when the Fellow said she would take us back. I had also called upstairs while we were waiting for the Porter to ask for Eric's pain meds to be ready. It was a pretty awful half hour but we got Eric tucked into bed with some meds. After about 1.5 hours of chilling in bed he seemed to be doing pretty well so I asked him to get up to take his inhaler and let the Care Aide change his bedding. With that minimal movement and pain meds on board, his head still started hurting almost immediately. Back to bed with more, different pain meds, since it had only been 1.5 hours since the last ones. The doctor also ordered a medication specifically for headaches. Unfortunately, that one is given along with Benadryl so Eric was pretty sleepy. Then Eric's nurse tells us we've got to go back to Ophthalmology, ugh! Eric was feeling great then, if a little sleepy, so we said we would give it a go. We were down there for 1.5 hours which was a lot of waiting, but Eric handled it very well this time. Once back upstairs, a Resident from Neuro came for a consult. She asked a bunch of questions and did an exam and said she would discuss with her supervising physician. ECG had come earlier in the day while Eric was suffering from a migraine, so they were asked to come back later. They never made it back so our nurse did the ECG. Busy day, loads of tests, but no results until tomorrow. What I do know, is that nothing is jumping out on any of the tests. 

The evening has been good so far🤞Eric is chilling in his bed playing video games. We are on contact precautions (isolation) because of the flu, so before Eric's nurse left for the night, I got him to bring some cups of water, heat up some dinner for me, and bring me some towels so I can have a shower. I hate, hate, hate relying on someone else for every little thing! I'm planning for a quiet, and early, night. 

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.