It's been yet another rough week, and, spoiler alert, Eric did not make it home for Halloween.
Last weekend Eric started to retain fluids, all the fluids! They measure everything in and out here, and by the end of the weekend he was positive 9.3 liters of fluid - he'd taken in 9.3 more liters than he had put out - and his weight was up 6 kilos from fluid. He was very swollen and uncomfortable and it was difficult for him to move around or even to get comfortable in his bed. They give him a diuretic to get that fluid off, but it wasn't working as well as it usually does, so they kept giving bigger and more frequent doses. By Friday, he was still a little over 5 liters positive, but when I came back on Sunday, he was noticeably less swollen and his weight was down 4 kilos; he had actual feet again, instead of balloons! There is still a bit more fluid to get off, but this is a great start.
Also over the weekend, Eric started to need oxygen to maintain his oxygen saturation. He has nasal prongs to get a continuous flow of supplemental oxygen, but it is at quite a low rate since he only needs a little bit of additional support. This may be a result of the additional fluids, as some of that will be sitting on his lungs. The oxygen keeps him attached to the wall, so again, very difficult to move around.
On Monday, Eric's Oncologist was the Attending responsible for the ward so we got to see him. He started Eric on a 5 day cycle of IV chemo, as planned. Additionally, he wants to figure out the headaches, so ordered an MRI of Eric's head and a Lumbar Puncture (LP). He also wanted to check in on the fungal infection, since I think it is the reason for the fevers, having ruled everything else out, so he ordered a chest CT. MRI was ready for Eric for an un-sedated MRI on Tuesday; however, Eric was so uncomfortable from the swelling that he said there was no way he could lie still in the MRI machine. Luckily, they were able to give him a sedated appointment for the following day. Since he was already downstairs in Radiology, they did the CT just before the MRI.
We got the CT results later that day and, unfortunately, the fungal infection has worsened in Eric's lungs since the last scan about 6 weeks ago. This could be another reason, in addition to the fluid, that Eric is requiring oxygen. Eric's team consulted with Infectious Disease and they've recommended restarting the IV anti fungal, in addition to the oral anti fungal that he is already taking. I have also asked them for a follow up bronchoscopy since that is the only way to see what is happening in his trachea, where the fungal infection was at it's worst. ID had recommended a repeat bronch about 6 weeks after the last anyhow and that is about where we are at. We have a follow up appointment with Respirology next week, so we might not get more info about a bronch until then.
We didn't get the MRI results until the following day and I was kind of freaking out, but there is no change from his last MRI. Of course, this also means no explanation for the headaches, which is both good and bad news - we'd like to know why, but a brain-related explanation may not be a good thing.
Eric had no trouble with the IV chemo through the week, but his blast count did continue to rise. Since it will take time for the IV chemo to start working, Eric's Oncologist added an oral chemo back in. However, his blast count still rose to a high of 22 on Saturday before starting to fall a bit on Sunday.
Eric had increasing pain throughout the week, and it was already bad to start, which we initially thought was due to swelling, but could also be attributed to the higher blast count. He's on a number of pain medications and his pain is still not well controlled, which has been causing him difficulty sleeping as well. Since he's feeling so poorly, he hadn't been building Lego, even though I made sure to get some sets to keep him occupied for our stay. Uncle Jon visited on Wednesday afternoon on his way back to the airport from a couple days of meetings downtown and brought Eric a Lego set. It was only after he left that Eric finally felt up to building Lego, which I took as a really good sign. He has also been gifted some Pokémon packs which are a definite mood booster!
Chuck came to the hospital Friday after work to stay with Eric over the weekend so I could go home for a break and to see Joel and Millie - one of them was VERY excited to see me. The other one probably was too, just not quite as expressive about it! I came back on Sunday to a very cranky Eric. He is so tired from not sleeping well, uncomfortable from spending so much time in his bed, and still in a lot of pain.
Next week I am hoping they can get him into surgery for a bronchoscopy, plus they plan to do an LP. Additionally, while Eric is sedated, they are going to insert an NG tube for tube feeds. This will give him the nutrition he needs and keep his digestive system engaged, while bypassing motivation, taste, texture, etc. Eric has had an NG tube in the past and HATED it, so he said no to the "nose tube" repeatedly throughout the week, but finally reluctantly agreed, only if they put it in while he is sedated for another procedure. He is currently still getting TPN, the IV nutrition, but they have not been able to optimize it due to some of the other challenges he's having.
Unfortunately, the fungal infection requires an immune system to treat but in order to treat the leukemia blasts the medication wipes out his immune system. It is a really, really difficult situation and both conditions are life threatening. We have no idea when Eric might be discharged, but I would be surprised if it was this week.
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