Happy November everyone! It’s hard to believe it’s been almost two months since Brooke’s relapse. Time is so abstract in this experience. It often feels to me as if time stopped on Sep 9th and I am constantly surprised that it’s not September anymore. And yet Halloween has already come and gone and now there are Christmas decorations out and about! It’s surreal.

Speaking of Halloween, Brooke had a great one! We are still in the hospital (today is our 14th day here) and they put on quite an event for the kids here. Each department from the hospital had a table set up in the lobby on the 2nd floor, manned with costumed representatives passing out candy, prizes, toys, and trinkets. There must have been about 75 tables all lined up and winding around the lobby, and each one gave out handfuls of loot. Brooke was dressed as Pinkie Pie the Equestria Girl (a My Little Pony character who turned into a human girl in the new movie). Her step-mom made her an awesome home-made costume complete with a pink wig, pony ears, and a tail! She was so excited the night before Halloween that she had a very hard time getting to sleep and then she woke at 3 am asking if she could put her costume on yet! It took an hour to get her back to sleep again, and then she was up again at 7:30, in full costume by 8! Thankfully the trick-or-treating event was at 10 am, so there wasn’t too much waiting she had to tolerate – just enough time to roam the halls and gather praise for her all pink get-up! The whole thing was over by noon and Brooke was back in her room, sorting through her piles of loot (she filled a pillow case about ¾ full!). We spent the rest of the day eating candy, playing with silly toys and prizes, doing Halloween crafts, and watching Halloween TV and movies. It was great! (check out the photos page to see her in her costume!)

Then on Thursday Brooke started her 7th week of treatment with a course of High Dose Cytarabine. This is a pretty big bad chemo, which was not part of her treatment 4 years ago, and is the reason for her current planned admission. The main concern is that her immunity gets so compromised that she is at risk for infections from normal bacteria and fungi in the environment and even in her own body, and so they want to be able to protect her and monitor her closely in the hospital. Last week the chemo brought on a fever, which is so common it’s practically expected, but they still have to treat it as a possible blood infection and start her on antibiotics until her blood cultures prove negative. She’s also had to have transfusions of both red blood and platelets this week, to help boost her counts.

This week has brought on a new challenge. Brooke’s eyes have been becoming progressively more irritated over the past several days. For a week now she has been extremely light sensitive and we’ve had to keep the blinds down and lights off in her room. Yesterday when she woke up she wasn’t able to open her eyes at all for four hours. She said it hurt too much to open them, even in the dark, and that every time she tried, they would just automatically close again. Eventually she was able to open them in the darkened room but couldn’t do anything that required a lot of focus (like reading or crafts), nor could she stand the brightness of the TV. Then in the afternoon she went down for a nap and she hasn’t opened her eyes for more than a second since. She has spent most of the last 30 hours laying in bed with a blanket over her head. She needs help finding her way to the bathroom and needs me to spoon feed her when she’s hungry. Entertainment has been a challenge….what do you do with a child who can’t see!? We’ve gone for a couple walks around the hospital (she pulls a hat down over her eyes and lets me guide her by the hand), had a few naps, listened to a couple stories on CD, listened to a movie she knows well enough to see the pictures in her mind’s eye, and burned through four and a half chapter books! It is hard to see her so compromised, but I love that she is such a captive audience for reading to!

The oncologists and the ophthalmologist who came to see her today say that this is not an unheard of side-effect from the Cytarabine. Apparently the chemo is secreted through her tear ducts and can cause pretty serious irritation. They have seen other kids unable to open their eyes. She’s been receiving steroid eye drops for several days which the doctors all agree will help her with this, it just may take a few more days for the chemo to leave her system.

So this week I am feeling especially grateful for the gift of sight, in my children and in myself. It would be so hard if this blindness were a permanent condition!

Brooke is, of course, taking it in stride. There have been a handful of times where she has cried out about the pain in her eyes and how frustrating it is that she can’t see. The rest of the time, she just moves through her day and figures out how to do whatever she needs to do without sight. She doesn’t ask for or complain about not being able to do the things she would normally want to do. She just accepts the fact that things are different today. When the volunteers come by to ask if she wants to go do crafts in the play room (which she LOVES!) – she just says “No thank you”. She really enjoyed being read to today, and that was fun for me because up til now she has had fairly limited interest in books without pictures. Having her eyes pried open for the eye drops is a little harder for her to take in stride, and having the ophthalmologist pry her eyes open and shine a bright light in them was basically torture. She always finds a way to get herself on board with what needs to be done though. A common strategy for her is that she tells us (me and whoever is the room doing things to her) how it’s going to work. “Ok, so you have to look in my eyes and shine the light on them for just a minute and then I have to get the drops two times today and then after that I don’t have to open my eyes again unless I want to right?” and then she just does it. She’s amazing.

It is a joy and an inspiration to spend all this time with Brooke, going through this with her. And it is also very trying. Being cooped up in this room, responding to her every need gets tedious some days. And I feel even more institutionalized with the blinds closed and the lights off. Thankfully we have visitors pretty much every day. Nick comes most days and often brings Aidan, and we have friends who come visit us too. I got to go home and have a couple days with Aidan over the weekend, and Nick stayed here with Brooke on Friday and Saturday nights. It was really good to have some time at home and with my boy. I miss him a lot and I am worried about him. 3rd grade is proving stressful for him and it’s made much worse by the upheaval of having his sister battling cancer again. He has mentioned more than once that Brooke is usually the only person in his life that he gets to be with every day, and he just misses her so much.    :.(

Brooke is such a lucky girl to have a brother who loves her so much. We are doing all that we can to support him right now and searching for creative ways to help him through this. I spoke with his teacher and principle and got their ok on a plan to do an “independent study” week for him once Brooke gets out of the hospital, where he could stay home from school with Brooke and I for a week and we’ll get a few lessons to do so that he can keep up with his class while he’s out. I am hoping that all that time with Brooke and with me, and a nice break from school will give him an opportunity to sort of re-set and hopefully return to school feeling refreshed and ready to take it on! (Now hopefully I can handle being stuck at home with them both for a week without getting overwhelmed and short tempered and making the whole thing worse! Ha! I’ll have to plan some fun in-house activities for us in advance, and maybe a week’s worth of take-out so that it can be a fun and easy week for all of us!)

So we’re down almost 7 weeks of treatment with 49 to go (not all consecutive weeks). When I say it that way it feels like we’ve barely gotten out of the gate. And at the same time I can’t believe we’ve already done 7 weeks of this, when it still feels like the first week of September to me! We’ll just keep on keeping on and some day there will be more weeks behind us than before us. And then someday we’ll be done and I’ll be sharing pictures of my amazingly healthy, you’d-never-know-she-had-cancer, beautiful 9 year old, just like I did with pictures of her when she was 3, 4, and 5! That’s going to be fun!! 🙂