Hospital Day 9/9

Day 9, Friday:

We got out on Friday as planned!!!! Eric needed both blood and platelet transfusions, which take forever, especially inpatient. They run it slower since it's safer and they have a captive audience. However, we wanted to GO! In the evening, I asked our nurse to let the day shift know we wanted to get started early so we could get out. Our day shift nurse must have taken that as a personal challenge. She was in at 8am for vitals and meds, called for blood and got that started by 8:30. She had platelets ready to go just before the blood finished and was done the transfusions by 1pm. In the meantime, Eric made me play Yu-Gi-Oh with him and I won! Eric said he might have been too big for his britches, ha! I guess he was pretty confident he would win and forgot about beginners luck. I told him I needed to pack up so he asked Ashley from Child Life to play more Yu-Gi-Oh with him and he beat her twice!

I was all packed up when the transfusions finished at 1pm. Our nurse de-accessed Eric's port and we hit the road! The doctor had brought discharge papers in the morning so that we could go as soon as the transfusions were ready. We got home about 2:15pm. Eric was so funny. "We're home and we get to stay!" "Oh, the couch is so comfy!" "I get to sleep in my own bed!" 

He slept for more than 12 hours last night and spent all day today on the couch in his pjs. It was a good day :)

We're back to clinic Wednesday for a check up and blood work. 

Hospital Days 7 & 8 / 9

Wednesday, Day 7: 

Eric finally had a good night sleep! Thank heaven; he really needed that. 

His doctor ordered the full/regular dosing of his treatment today. However, we didn't learn this until 9:15am when Eric absolutely refused to take the medicine because he isn't supposed to eat for 2 hours after. He usually takes it at 8am. His doctor said that was ok, that he could go back to full dosing the next day instead. 

Neuro left a pamphlet for me about migraines in kids. It includes some vitamins and minerals that are supposed to help prevent migraines. Eric's doctor has added those to Eric's daily meds, but apparently they take 2-3 months to work. 

Eric's doctor (pediatrician) also suggested that we leave the hospital on a day pass in order to test Eric's head in his normal day to day conditions. We decided to go home for the day. We got home about 1:15pm. Eric watched tv and built Lego, so the same thing he does at the hospital, but at home. We were able to eat dinner with Chuck and Joel and give Millie lots of cuddles. Unfortunately, it was only a day pass and we left about 7:15pm to go back to the hospital because we were supposed to be back by 8pm. It was really hard to leave; getting that little taste of home is almost harder than just being at the hospital full time. 

No headache for 3 days now!

Thursday, Day 8:

Another good sleep, yay! 

Back to full/regular dosing of treatment today 🤞

Doctor came in early this morning to give us the okay to go out on pass so we could have a longer day at home. Eric hasn't even finished his meds and I am still in my pjs drinking tea. The plan is to discharge Eric tomorrow if everything goes well today. Unfortunately, it looks like he'll need blood and platelet transfusions tomorrow before we can get out, so we won't be out until later in the day. 

This morning before the doctor came in, Eric finished the Lego set that was his prize for the MRI. It is a Ninjago set that transforms from a plane to a mech. 

He is excited to go home to work on the Lego set that he is building there - Hogsmeade Village - that he got for Christmas. He also dug out his Yu-Gi-Oh cards and is threatening to make me play with him tomorrow. 

While at home this afternoon I was able to make it to my blood donation appointment. It is hard to believe I didn't use to be able to find the time for this and yet I was able to go today with only an 8 hour pass from a week in the hospital. I was actually only out of the house for exactly one hour and I stopped to get gas on the way there and milk on the way home. 

We are back at the hospital for the night. 

4 days no headaches 🤞

Hospital Days 5 & 6 /?

Monday, Day 5:

Our sleep Sunday night was only marginally better. Eric's achy legs made it difficult for him to fall asleep and then his tooth fell out and then his nose started bleeding. It was midnight before he got to sleep. He has had 4 super loose teeth for quite awhile and that was the 4th one gone, thank heaven. They're a worry because of the low platelets, so they bleed, and they're also an infection risk when you are immune compromised. Eric also woke up at 3am complaining about his legs, but it didn't take him too long to get back to sleep then. He was up by 8:30. He said he tried to sleep more, but he couldn't. I told him 8 hours wasn't enough for a 10 year old. It certainly wasn't enough for me! 

He wasn't feeling great Monday. it is probably the lack of sleep as much as anything else. He did not have a migraine or any other pain, just feeling a bit off. He spent the morning lying in his bed watching tv in the dark. Later in the day I was able to turn on a little light and he sat up in bed to build Lego. He built the motorcycle that he received awhile ago from the Baker Drive Elementary community and I had saved to entertain him in hospital. 

Eric's Oncologist came in to see us first thing and I was so happy to see him. He says the medication should be completely out of Eric's system and since he still had a migraine Sunday, he doesn't believe it is a side effect from the medication. He says we will restart the treatment at half the dose. He reiterated that this is an important time while we wait to see if the medicine will work or if the blasts will take over. The blast count in Eric's peripheral blood is higher Monday, which makes me uncomfortable, but his doctor says it is still at a safe level and we will just keep an eye on it. He still wants an MRI done but is also having the team look into medications to prevent the migraines, instead of just treating them after they appear.  

Tuesday, Day 6:

Another bad night last night. Eric got tucked in early and was so tired that we were optimistic, but he just wasn't able to sleep. After awhile, he ended up so frustrated and upset, that he ended up vomiting. Then he blew his nose and it started bleeding, a lot. He ended up getting a platelet transfusion at midnight. Since he's allergic to platelets, he usually has Cetirizine (Reactine) first, but this time I asked for Benadryl instead to help him sleep. He fell asleep during the transfusion and slept through until 8:30am.  

After 3 rough nights in a row, he is super tired today, just laying in bed watching tv. We were able to get off precautions today since it's been 10 days since the onset of the flu symptoms. I went straight to the washing machine! 

He had an MRI scheduled for 3:30 today. He hasn't had one in a couple years and was able to be sedated for those ones. Now that he is older, they want him to do it non-sedated. He was a little nervous about staying still for long enough and the "coils" that go over his face, but he does get to watch a movie. They had also initially told him that they couldn't use his port for the contrast dye and he would have to get an IV, which he hates. However, we since learned that they can use his port and he won't have to get an IV. We are giving him some migraine medicine in advance, just to make sure that he doesn't get a migraine once we start moving around. He is such a brave kid who has to do way too many hard things. He did amazing, of course! 

Eric's regular inpatient pediatrician is the doctor he has been seeing this week, except when his Onc stopped by yesterday, and she wanted him to get out of the hospital on a pass today to see how he did moving around. Due to the MRI, we couldn't get out until later in the day so I took him to the Lego store to get a reward for doing such a hard thing today, and he got an Orange Julius too. 

No headaches for 2 whole days 🤞🤞🤞

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!