A Long December - Posting by Elton

It's been awhile since Jess has posted but if you have been following our tweets, you could see how busy we have been. Even with the tweets, it's probably difficult to gain a sense of what's going on so here goes.

On Jess' last posting, she had her lungs drained of any fluids in hopes that it would help improve her breathing and discomfort. The theory was that the fluid was constricting her lungs from expanding so draining it should allow room for the lungs to open up again. However, on the days following the procedure, Jess showed no improvement. After more testing and scans, they concluded that the outside lining of her lungs (the pleura) had been infected with the disease and that it has hardened making it impossible for her lungs to expand, even with the absence of the fluid. They called this trapped lung.

Meanwhile, the lesions in her brain had also grown since her surgery from November and doctors were pushing for Jess to reconsider and to have whole brain radiation. Even with the growth, Jess wanted to focus her treatment on the lungs as that was affecting her the most on a day-to-day basis and planned to re-visit the brain once it became a greater concern. She always felt radiation was inevitable but wanted to last as long so she could to seek relief for her lungs. Since she had pretty good success on her first round of chemo pill treatment, she and Dr. G agreed to continue on with another round of it and see how things would progress. Jess also wanted the chemo drug so that she could integrate it with the oncothermia treatments she had been getting in Langley, which studies have shown positive results when the two treatments were in conjunction. But this time around, the chemo didn't make her feel well at all from her very first dosage. She was experiencing a lot of side effects, the worse being zapping nerve pains in her ribs area, restlessness, nausea and insomnia. After a couple of days, the discomfort becoming so unbearable, she had to discontinue the treatment so that she could somehow get some rest but the side effects never subsided. Jess' insomnia progressively grew worse and continued to complain of severe pain, restlessness and antsyness. No matter how hard she tried, whether it be meditation, soft music, massaging of legs, she just couldn't sleep, at one point for 48 hours straight. Eventually, she was referred to the pain management clinic who prescribed her some pain meds and other medication to relax her and help her sleep. She tried a variety of medication but it made matters worse and caused even more side effects. We were hoping for solutions but it was frustrating as it felt like the doctors were guessing and going by trial and error in hopes of finding some kind of relief for her. When we saw Dr. G shortly after, she thought that some of this discomfor can be attributed to the chemo drug (second rounds of chemo treatments are sometimes more harsh than the first), side effects from the medications and possibly lesion growth that's pushing into the tissues of her brain. She again recommended whole brain radiation and with Jess left with no choice, agreed.

Whole brain radiation treatment normally lasts for a few minutes while they zap your brain, one treatment a day for ten days. But in Jess' case, they doubled the daily dosage of her radiation and to have it completed in half the time so that they could treat the disease more aggressively. Because the treatment causes swelling to the brain, Jess had to take an additional assortment of medication - one of which was a medication that she has been trying to ween off of since her surgery which causes, of all things, insomnia, anxiety, and restlessness. We explained that she's been having problems with these side effects but the dangers from the swelling outweighed our concern and they increased this medication to EIGHT times higher than what Jess was already taking and had already been trying to ween off. As expected, Jess' condition progressively got worse those next few days. There was a lot of back and forth between us and BCCA to monitor Jess' condition at this time and they had even recommended a couple of times to have her admitted into BCCA so she can get some professional care. Jess initially refused for a variety of reasons but with no signs of her condition improving, we eventually made the decision of calling BCCA and ask to be admitted which ended up to be Xmas day.

At BCCA, they are able to increase her pain meds significantly and monitor her better there with doctors and nurses on standby. Her first night there was OK but by day two, the meds were finally able to catch up to her pain and improved her ability to sleep. She continued to show improvements as the days went on while adjustments of her dosages were ongoing. During this time I would stay most of my time at the hospital, while our kids were staying with Jess' sister Grace's house. I mostly stayed overnight, spending my days balancing my time between the boys, resting or being at the hospital. When I'm not there during the day, we had friends and family who literally took turns taking three hour shifts sitting at Jess' bedside helping her whenever she needed it or watching her rest while texting me updates on how she is doing.

Jess is still at the hospital now and even though they have been able to manage her pain, she is still not ready to return home. Jess has been laying on her back for the last two weeks with little or no activity on her legs so it's very difficult for her to stand, let alone walk, on her own. The weakness in her legs is also caused by another side effect of the anti-brain swelling medication so she will need to regain some strength back in her legs through physiotherapy and rehab, as well as making sure we have some equipment at home to help her get around.

Now that school has re-started, I felt the need to provide the boys some consistency and stability even though they were receiving such great care from Grace, her husband and being with their cousins during the holidays. I have consulted with professionals with what I should do with the boys and it's important that they returned home and to have their parents, even though if it's just me, with them. So I have returned home now so that I could have dinner with them, play time, bathe and brush their teeth, prepare them for bed, make breakfast, change them, and take Aidan to school while my mom watches Liam at home. After dropping off Aidan at school, I would visit Jess at the hospital from about 9:30 - 2:30pm until I need to pick up Aidan from school and the cycle continues again in the evening.

We are supposed to have an appointment with our oncologist tomorrow so we should have a better idea in terms of how effective the radiation was, where she is at now and also what the next course of action for Jessica would be. Being at the BCCA is just a short stop in Jess' journey to recovery and we're not losing sight of our goal. Not for a moment.

It has been a very emotional holiday season that has affected so many of our closest friends and family. For myself, it has been extremely draining both emotionally and physically and at times, wondering if this is all really happening. Every thing has been a blur and I try very hard to focus on the moment, whether it be the kids or Jess, and try not to think too much about the future as I've come to terms that it's out of my control. I'm human and I'd be lying if I told you that I didn't have my tearful moments but I honestly couldn't possibly imagine how much more difficult this would be without the love and support from our friends and family who have sat by Jess' bedside, who have brought us food, taken care of our kids and played with them, those who have reached out and sent me and Jess messages of encouragement, the prayers, the talks, the laughs...it all helps us every single bit and we are really grateful. Christmas evening alone with Jess in a quiet dark hospital room really humbled me on how fragile life is but I was overwhelmed how many people sent me messages when they should have been busy with their families. We really do have a great sense of gratitude despite all this madness. Thank you so much from the bottom of our hearts! Here's hoping for a better new year for everyone and hoping that Jess would have the strength to write the next blog!