The Fight Continues - Posting by Elton

It's been a while since I have posted as a lot has happened but it's been very difficult to get even a brief moment to gather my thoughts. That's why tweeting has been a lot easier but even then, it's hard to even get the full picture of what is going on.

After my last posting, Jessica's legs were getting increasingly weak making it very difficult for her to walk. Doctors were concerned that maybe the disease could have spread to her spinal cord so they ordered an MRI to rule that out. For those who have never had an MRI done before, you lay on a bed and are slide inside a machine and lay still while the machine scans you - similar to a tanning bed but in a tunnel. It also could be very warm in there and it makes a loud humming noise. Jess gets nauseous very easily and when she went in for her MRI, Jess was already quite weak from the effects of her new pain killing medication so it wasn't a surprise that she had to stop the scan after a few minutes into it. But because they start from the head down, they were able to get some imaging in the short time she was in there and the results didn't come out positive. The scans had shown that Jess's disease had spread to the tissues at the base of her neck, around the top of the spine area. The tissues there are very similar to the ones in the brain so they weren't surprised that a tumour had developed there. They recommended 5 treatments of radiation to the area, similar to what she had on her brain. The radiation could hopefully relieve her back pain and prevent more spreading of the disease down her spine but would add more toxicity to the body and a sun burn feeling on the surface of where radiation would be treated. Side effects were minimal compared to the huge plus side so she decided to do the treatment.

After two radiation treatments to the area, they wanted another attempt to complete the MRI. This time, they gave her Ativan, a drug to control her anxiety and relax her. It worked and she was able to sit through it, but it still required a lot of work for Jess to remain focused and not abort it. I was waiting outside the lab when our radio oncologist, Dr. N, walked by without making any eye contact. I called him back and asked if he had an opportunity to see the imaging and he said yes but would need to review it with his colleagues first before having a discussion with us. I've spoken to many doctors during this journey and when they say that, it's never good. Later that evening, Dr. N came to our room and told us what we didn't need to hear. The scan had shown speckles of the disease spread down the canal of her spinal cord which is the likely cause of her having difficulty walking, causing her back pains and maintaining any strength in her legs. With the way it had spread, they couldn't radiate on it because radiation works best when they can target one specific area (like a tumor) rather than the length of the back. Jessica could continue with the remaining three radiations for the base of her neck but it would just weaken her further without any added benefits when the disease could pop back again in the same area.

This new diagnosis left me with such incredible guilt because I had been trying to push Jess to walk, get up and move so she could progress and get better. I was determined to have her fight with every ounce of energy when all along, she's been trying to tell me she couldn't. But upon hearing this news, how the heck could she? Jess had always been a do-er, getting things done, and never giving up. If she could have walked, or even had the strength to attempt it, she would have done it already. I was more concerned about what I wanted her to do rather than what she COULD do. I was trying to get her to do things to comfort me and make me feel at ease, that she is improving, rather than listening to her on what she could realistically do and it's another lesson for me on how I can be a better caregiver to her.

If radiation is not an option, then what could we do? Dr. N specializes in radiation and couldn't speak of other possible, if any, treatments. Our general oncologist Dr G was also out of town at the time and wasn't expected to be back until 5 days later. This was a frustrating and stressful time because there were so many questions that needed to be answered and the one person who could answer them was not going to return until 5 days later. We were seeing so many residents and other types of doctors but none of them could give us any concrete plans as they wanted to defer to Dr. G. On top of that, I couldn't be at the hospital until after I had dropped off my son at school which meant being at hospital at 9:30am, leave the hospital at 2:30pm to return in time to pick him up, feed kids dinner, put them to sleep, return to the hospital for a few more hours in the evening while I have relatives at home with boys, go home to sleep, and start the day over again tomorrow. So I was only able to spend about 5 hours with Jess a day and my opportunity to speak to doctors were limited as they did their rounds either before my arrival or after I leave. So the doctors would speak to Jess on her own but I couldn't possibly expect Jess to remember in her medicated state what was told to her and then have to rehash everything back to me. After expressing my frustrations to counsellors and nurses, and even a verbal assault on a doctor, I caught their attention and they had a colleague of Dr. G speak to me.

Dr. A is a pain management specialist who knew Jess' file well since she prescribes her the pain medications and have been working with her for about a couple of months. I came in one evening and she pulled me aside while Jessica was asleep to break the news to me that there were no other treatments available that they could offer Jessica for her disease. Surgery couldn't be done and chemo isn't an option due to it's history of resistance in Jess' previous chemo treatments. They said that there is a 1% chance that chemo may work but not worth putting Jessica through the punishment with Jess' immunity so low and her being so weak. They feel it's best that she uses the time now to spend with friends and family. She continued talking but all I was thinking was what I was going to do now. I was in denial, then the thoughts of my life with the boys without her, and how I'm going to tell Jess that doctors have given her an expiry date.

The talk with Jess was a very emotional one and like everything else in this journey, surreal. We cried, talked about our past, the future, what to do with the boys, the what ifs, and even had some laughs along the way. But the one thing that came out of our conversation was our unwillingness to accept a doctor's opinion on her fate. We realized that this changes nothing in our plans and will continue to fight. Jessica is a special human being with incredible determination and strength and we were going to continue to explore other ways when science has failed us.

But yet, another test of Jess' will and strength came shortly to her on the evening of January 13th. While helping her sit up on her bed, she quickly had a shortness of breath and was starting to panic. Unable to speak, she motioned for me to quickly lay her back down and call for help. I yelled for the nurses and doctors while seeing Jessica laying on the bed, with her eyes closed, working hard and desperately take in every breath, with her ribs rising and lowering each time. Aidan was in the room playing on my iPad and had to rush him out while blocking him from the view of Jess' bed. Within a couple of minutes, there were a team of people giving her oxygen masks, connecting her with monitoring devices, giving her needles with medication, playing with dials and pushing frantically at buttons. Medical staff were coming and going while I sat there helpless with her eyes sometimes opening to take a glance at me. Seeing her in such difficult to breathe, I couldn't help but think that this could be it for her and I am in this room watching it all unfold before me. After about 30 minutes, a doctor pulled me aside and said that there is nothing else they could do for her and it was all up to her and God now. They think that a blood clot occurred in her lungs and the situation was life threatening. He suggested I notify all her family that night and for me to stay over in case she doesn't make it to the morning. But he said considering the situation and the condition she's in, he was baffled by her ability to absorb oxygen and amazed at Jess' will to live!

I am not a religious man but that night, I needed help to carry me through when I was lost, confused and scared. I seeked out our friend Pastor Marvin, who we had only met just that week, to help me and Jessica. He came at midnight and stayed with us until 4am to pray for her - the more he prayed, her breathing was getting better. Call it coincidence or call it divine intervention but by the next morning, Jessica was breathing a lot easier. I didn't sleep a wink that night with my eyes completely focused on her in case she needed help. At around 7:30am, she was weakly moving her fingers, in a snapping motion, to gesture me over. With eyes closed, she attempted to utter some words, couldn't get it out and gestured of writing with a pen. I brought over the pen and pad and she slowly wrote some directions and messages to me with whatever energy she had in her. Whatever she was writing couldn't come soon enough but at the same time, was worried that this was going to be her way of communicating to me from here on end - that I may never hear her speak again. As I'm typing this I realized I could go in great detail with everything and this could be several paragraphs, if not pages long and have already wrote a long post. I will spare you with the details but will let you know that Jessica has recovered from this incident, is able to speak, is eating - pretty much everything she was doing prior to this episode, including joking and laughing too. She has been taking everything that has been thrown at her and I am running out of adjectives to describe how incredible she is. I would like to continue more of what has transpired the last couple weeks with a post the next few days so hopefully I can find some time.

In the meantime, I want to let everyone know that though Jessica and I have been unable to reply to all of everyone's messages via Facebook, email, texts, Twitter, etc. rest assured we have been receiving every single one of them and appreciate all the encouragement and support. Please continue sending your prayers and positive thoughts!