It is so hard to believe we are one year into this journey. It's hard for me to even wrap my head around it.
While we didn't receive her official diagnosis until the 19th, both David and I feel like the 17th is the day it all "went down." So it's today that has us thinking, today has us weighed down a little.
I find myself feeling "all the feelings" today (and yesterday really). While I do feel a tremendous amount of gratitude, and relief I also feel overwhelmed and exhausted. But mostly a little disbelief that we've made it to this point. A year ago I couldn't even let myself think this far. And now we're here.
I've been thinking a lot about what we were doing one year ago. In the morning she was so off and by late morning she had a fever. Combined with the petechial rash I'd found a couple of days before my "mom alarm" was going so crazy I couldn't even think straight. It wasn't until David said, "take her in." That things came into focus. I knew I needed her to have her blood drawn, that was the only way to either calm my fears or figure out what we were dealing with. The ER docter was confused at the platelet count of 8, but I wasn't. Then we had to wait while he figured out where to send us. I have no doubt that he was lead to our oncologist, who was quick to say get her here now. I'm thankful that everyone was OK with me driving us. The doctor came to the hospital that night to meet with us and work out a plan for what came next. I felt so calm at that point. Perhaps it was the calm before the storm.
I've been going back and reading through our days when she was first diagnosed and in the hospital for 10 days. It seems so so long ago and we feel so far removed. Sometimes I think I had it more together then. And at the same time I feel that somewhat discredits the whole year and what we've been through. A year ago I couldn't have not predicted what this experience would do to me. The effect it has had on my mental health, I do feel like that was something I wasn't prepared for. I like to to think I'm moving in the right direction. However I know that I will always be affected by this experience. I feel as if I will always be nervous when someone has a fever, that I will constantly be checking for those tiny red spots that started this whole thing. With each little bruise and each little illness a part of me will wonder if it's something more. I wonder if the start of each new school year will always bring this flood of emotions. As you can tell I'm still trying to make sense of it all. Which is what I'm allowing myself to do.
So how is Mary now? Our usual response is, "she's good!" Considering where she was at a year ago, she's really good.
Here's a quick run down of Little Miss.
She will ask, now, to go to the doctor. Something we find hilarious and sad at the same time. When I took the kids to the dentist the other day she was ticked that she didn't get a turn. When we walk into the cancer center she acts like she owns the place. When we're done with our visit she will say "bye!" to all the other patience as we walk through the treatment center. She is currently a fan of ramen noodles, but I've been trying to limit her intake as her weight is something we are constantly mindful of. She recently moved back into her bedroom she shares with her sister. Some bedtimes go better than others. Sometimes she keeps her sister up with her chatting and humming. And sometimes she falls asleep on the floor, half in and half out of her room. On Thursday she starts Kindergarten, again. (After many longs weeks of weighing and re-weighing we felt it best if she repeat Kindergarten, giving her a chance to actually experience it.) Last year, leading up to that first day of school, when I'd ask her if she was ready she would say "no." The past couple of weeks she has usually responded with a "yes!" Progress is good.
As far as treatment. She still has daily chemo that I give her. Then once a month we go to the cancer center for IV chemo. Her immune system is still a bit fragile. In June she gave us a run for our money when she developed a fever (I don't like those things) and we were in the hospital for a few days. We found out she had the flu, but there was a concern over her port being infected. Thankfully that wasn't the case. It was a long few days, just the same.
Since we sent the big kids off on their first day of school this morning the girl and I are going to bake cookies to share with them when they get home. Then we will spend the afternoon doing chores and just hanging around the house. I recognize that it's not that exciting but thinking back to where we were a year ago it feels all kinds of right.
