Blogging today is sort of surreal. Things have happened and somehow life has continued to move forward. Christmas at home was simple and quiet, but we felt lucky to be able to be at home. Being away from our extended family felt strange and so different, but next year should be 'normal' again- whatever 'normal' is. New Year's Eve was also spent at home. We sat around our table and played Candyland and Don't Break the Ice. We watched movies, and then at midnight watched Dick Clark (when did he get so freaky?) and the ball drop in NYC. Then we stood on the porch and watched the fireworks in our neighborhood. It was a calm way to bring in the new year and I loved being surrounded by my little family.
Bad and good. Unfortunately with chemotherapy bad and good walk hand in hand. We have had several doctors appointments the last few days, and unfortunately we have heard more 'bad' news than good. Bad news is upsetting, but I am trying to see the good that goes along with the bad. We went to the Audiology appointment to check on Jackson's hearing. Up until this point he has had no changes in his hearing due to the chemo, but this last round his hearing was significantly changed. The audiologist told me "Jackson has significant high-frequency hearing loss". I knew that this was always a possibility, but I didn't think it would actually become a reality. I struggled to fight back tears in the doctors office as she explained to me the extent of his permanent hearing loss. I did my best to be strong- and when Jackson asked me if I was going to cry I took a deep breath and we started looking at the hearing aids together. He was my strength- he is the one that made me feel okay with the loss of his hearing. He told me he doesn't care if he has to wear hearing aids- and then he joked that we can get hearing aids together because I have bad hearing too. He is such an incredible source of strength to me.
I explained to Jackson that he doesn't need hearing aids yet, but after the next round of chemo, he may have more hearing damage and he may need hearing aids at that time. I told him about one of his 'cancer buddies' Skyler and how Skyler has hearing aids- Jackson thought that was so cool that another kid his age has hearing aids. He loved looking at pictures on Skyler's blog of Skyler's hearing aids. He also thought it was cool that Grandma has hearing aids too. With the bad news of hearing loss, I find myself grasping and looking for good news and surprisingly I find good in strange places. The good comes with Jackson, he is an incredible source of strength, motivation and inspiration. The good comes from people we barely know- people that have walked this path of cancer before us- people like Skyler who make scary things feel manageable.
We got more bad news this week, this time it was about Jackson's kidney function. The chemo has reduced Jackson's kidney function by 50%. When I heard about the kidney function problems, I was shocked. Once again- I knew this was a possibility, but the part when it became a reality was overwhelming. My chest got tight, and I go into panic mode. This chemo is wonderful and horrible at the same time. It destroys otherwise healthy parts of my son, which is bad- but it also kills his tumor which is good. Good and Bad- together again. Good news is that Jackson can function normally on 50% of normal kidney function. Good news is that the kidney damage may not be permanent. Bad news is that if his kidney function does not get better in the next few days that they have to give Jackson a lower dose of Carboplatin (the kidney damaging, hearing loss causing, tumor killing chemo) and Jackson's chance of remission is decreased. Remission is always our goal. Good news is that we get 4 extra days at home hoping for his kidneys to heal a bit. Bad news is that if you space out his treatments too far his chance of remission decreases.
Good and Bad. Bad and Good. Up and down- it is like being on a roller coaster; happy at one point, but afraid of what is to come. Afraid of the unknown.
We are just trying to enjoy the good when it comes with the bad. We are grateful that the good helps cushion the blow of the bad. And hoping that there is more good in our future.