our son's journey: Keep Plugging Away-10

The rumour going was that we were getting discharged from the hospital by August 26th. That day came and went and soon unfortunately, we found ourselves as residents of the oncology unit at BC Children's. The docs were anxious to completely release us from the hospital because they feared another big bleed or something equally as scary. When children are so young and small, it takes no time at all for them to crash, maybe because the surface area is much smaller? We were coming to realize that we were going to be in for a long haul. Having said this we also realized that having Chloe with Jeremy everyday was more detrimental than beneficial. She was clearly getting worn out. We thought that having the whole family altogether was a really good idea, but truthfully it was cutting in on Chloe's sleep time and our poor little girl couldn't do it any more. We made the decision to try to bring her out as much as we could and we would try to make the most of our days with her so she wouldn't feel left out. She was only two and didn't understand the situation. All she knew was that mommy or daddy went to the hospital all the time and spent time with Jeremy. Luckily Chloe was already used to parents that work shift work so having one parent around or neither parent around was not a huge deal. So Brent and I kept plugging away, swapping shifts at the hospital and at home. We really got a lot of quality time with our kids, but the time for the two of us was put on the back burner. I suppose this is what happens in these situations, but it sure didn't make it any easier. I was also getting worn out. I was trying so hard to keep my head above water that I never let myself sink or just be sad. I never wanted to be sad around Chloe, Brent and I decided this was something that she did not need to see and be a part of. I also rarely broke down at the hospital because I just wasn't comfortable doing this at my place of work. I always stress to parents that it is so important to take care of yourself too. Making sure you get enough sleep, you eat, you go for walks or do whatever is needed to de-stress and you let yourself go once in awhile. It's ok to be human. Wow, I didn't realize how hard this was to do because you get so wrapped up in everything and you want to be there for anything and everything. One day after getting only three hours of sleep, I headed home to be with Chloe and Brent came to do his shift at the hospital. I wept and sobbed uncontrollably all day. At the time I felt like I was falling apart, now I realize I needed that more than anything. And of course, after that day I kept plugging away, but being mindful that I did need to take time for myself.

We continued on with life, visiting with family and friends especially at the hospital because people were wanting to see Jeremy. We celebrated Nana's 60th birthday on the hospital deck, took Chloe to Whistler for a special day with just mommy and daddy to herself, and just tried to make the most of life. We also had Chloe checked out because she has two hemangiomas, one on her left leg which is almost completely gone and one on her back. They were there at birth and I was never worried about them until Jeremy had his suspicious "hemangioma". We went to Children's and my concerns were put to rest as the doctor told me that these were only hemangiomas that she had and that they should clear up within 5 years. I felt much better.

The following day Jeremy had another MRI. This time the news was much more promising. The lesions in his brain were smaller and the lesions elsewhere in his body were either bigger or had stayed the same. Overall our doctor was happy. At least the cancer was responding to the chemo, and at least the tumours in his brain were shrinking because those were inoperable. We would continue doing the ICE chemotherapy and that would start again that Friday.