Well we made it through our first week of treatment with relative ease. Brooke’s energy and spirits were a little low for a couple days at the end of last week – but to be fair she had had general anesthesia two days in a row, needles in her spine, her hip, and both hands, surgery to place her central line, AND six types of chemo. By Saturday she was bouncing back and she’s been better and better each day since. These last couple days she’s been feeling great – cheerful, chatty, friendly with all the nurses, doctors, and volunteers. Her appetite’s been good, her sleep has been good (despite having to get up to pee 4 or 5 times in the night due to all the IV fluids they’re pumping into her), and her outlook and perspective are nothing short of inspiring. Pollyanna’s got nothing on this kid!

There really are a lot of things here for her to smile about too. She loves crafts and creative projects and she has been just steeped in things to draw, paint, decorate, and create! She loves the playroom and usually asks to go there within minutes of waking up, and she is a favorite among the nurses and volunteers. She also loves having her family around her and I think she really enjoys that her two worlds are overlapping. And she has had several special visitors already, including her teacher from school (who she loves!) and her best friend from Kindergarten.

Aidan has also been doing really well. As I mentioned in my first message, he had a hard time adjusting to the news and was feeling very sad and sorry for his sister the first couple days. But after visiting her in the hospital a couple times and seeing how much fun she is having here, he feels much better about it. We have made a lot of effort over the past week to spend time with him and keep some things normal for him, and I think that helps too. We were so floored by this when it happened 4 years ago that things got pretty chaotic for him. I think this time we will be much more able to help him feel safe and stable. He has come to visit Brooke every day so far, which they both love, and he is just endlessly sweet and affectionate with her. He has such a good heart. This week he got time with his cousin Kai, who he LOVES, his best school friend, and his Nana. Plus he gets to see both his parents every day, which is pretty fun for him after 2 years of one week here, one week there. He really seems happy and accepting. I love it when he smiles. 🙂

As for me, I have had lots of good days, and a few not-as-good days. It’s funny how sometimes it’s the little things that pull me down more than the big things or the even bigger things! I can spend all day feeling confident that we can get through this and get through it well, that all of us will grow and learn and expand from the experiences we have and we’ll be better for it, that this is all part of a divine plan that is infinitely more perfect than any of my ideas of how things ought to be….and then I’ll get stuck in traffic on my way home during my one short break from the hospital….or the cafeteria will be out of the only food I was interested in eating…and suddenly it feels like I can’t possibly go on! When that happens at least part of me is able to keep a perspective on it and know that it is just a passing wave – even if I do have to cry it out or vent to a close friend before I can let it go and get back on track.

Having my mom here this past week and a half has been amazing. She has been even busier than I have, doing errands, laundry, dishes, housework and odd jobs, and caring for Aidan and my home, in and around her daily trips to the hospital. She’ll be heading back to her own life soon, and we both had a little cry about that today. I know I probably made it even harder for her to leave by breaking down…but what can I do. It was a fragile moment and at least it was authentic, right? And she should know how much I love and appreciate having her here. It really will be ok though. We have a long road ahead of us and she’ll be back multiple times before we’re through. She’ll still be in this with us even when she’s not right in the same room with us.

One thing that makes it easier to see her go is the amazing outpouring of support and offers to help from all the friends, family, and community around us. My mom is helping me get a Care Calendar up so that our support community can see what we need most and sign up to help in ways that fit into their own lives. I think that is going to be invaluable in helping me get through this next year! I feel so blessed to have so many truly amazing people surrounding me now!

So overall, things are really good right now. Brooke has been taking steroids (Prednisone) three times a day for 7 days now and she is tolerating them very well so far. I can definitely tell that they are in her system – she has that “steroid look” in her face that I remember so well. And her moods are clearly more sensitive. But there is nothing like the monstrous roid rage we saw when she was little. She is happy and sunny almost all of every day now, and when she does break down or heat up – she rides it out and recovers from it usually within a minute or tow. This is a HUGE relief to me. I was dreading the steroids!!

Another small blessing is that Brooke amazed us all the other day by “learning” to swallow pills. I use quotations here because there was really no learning curve involved at all. When the first pill came and the nurse was asking us if we wanted to crush it up and put it in apple sauce (which is what we did in the past), I sat down on Brooke’s bed and started in with what I had intended to be a motivating pep talk… “Ok, honey you know we have to do a lot of things while we’re here to get you better and one of the things is that you have to take a lot of medicine. I think it would be much easier for you if you could learn to swallow pills so that you don’t have to taste the yucky medicine. Now it may be kind of hard at first to get the pills to go down, but if you practice…..” I am sure I did not even get this far into it before she picked the pill up out of my palm, dropped it in her mouth, took a swig of apple juice, and it was gone. Just like that. And she sat there looking at me like she had done this a thousand times before and it was no big deal at all! That was a week ago and she’s been swallowing pills ever since! Yay!!

She really is incredible. I love that little pixie.

Tomorrow is her next chemo day. She’ll be restricted from eating or drinking after 6 am and then in the afternoon she will be sedated and have a lumbar puncture and intrathecal chemo. After that she’ll receive infusions of 4 more chemo drugs. It will be likely be a tougher day than the past few, but I figure one or two hard days out of seven is a pretty good ratio. And besides, if the past week is any indication, she may surprise us by just how unsinkable her bright spirit is!