Time is just flying by. I guess that’s good though! Almost 5 weeks down now, 51 weeks of treatment to go before we get to Maintenance. They won’t all be back-to-back weeks though – there are many times where they hold treatment and give her counts a chance to recover before they continue. So it will be more than a year before we get to maintenance. The important thing is though, we’re getting there! One step at a time.

Brooke is still doing really well. She got out of the hospital a little over two weeks ago. She has loved being at home and has been doing really well here. I love having her home and have been super busy. Between going back and forth to the clinic, getting things clean and organized for her home care, catching up on the laundry, errands, and misc tasks that piled up while we were inpatient (which is extra complicated since Brooke can’t go anywhere but home and the clinic, and I can’t do anything that might stir up dust while she’s at home), and taking care of the kids, I have barely had time to think. By far the biggest task has been tending to Brooke’s needs while she’d been on Prednisone (a steroid) which she took 3 times per day from Sep 12-Oct 10. The steroids taste really terrible, make her very moody with unpredictable bouts of sadness, fear, and rage, make her tired, mess with her taste buds causing her to be very particular about food, and make her incredibly hungry! Brooke did 4 weeks of Prednisone at the onset of her treatment when she was 16 months old too, and I remember that as being the hardest part of her treatment in many ways.

This time around was not nearly as bad as it was then – I think we both have more capacity to cope with it than we did 4 years ago. It hasn’t been a total cake walk, but it’s been manageable. Keeping up with Brooke’s appetite and cravings has been a lot of work . She has been eating about every 2 hours, and often it took 20-30 min of discussion and trial and error to discover something that tasted good for her. Sometimes it got pretty desperate – with Brooke crying about how hungry she was, but everything we could think of and everything she tried did not appeal to her. And we were pulling out all the stops – no rules about what or how much she was allowed. I was offering her all her favorite foods and treats, any time of day, but often none of it sounded good to her. Sometimes the one thing she could think of that she wanted was something we didn’t have on hand and then I would have to call one of my helpers to go get it for us because she’s not allowed to go to the grocery store. Finally we would find something that tastes good, she would eat a truckload of it, and an hour or two later, we would start the process over again. Add food prep and clean up to that and there wasn’t much else I could do in a day! Thankfully she did not have trouble sleeping at night and got all her eating done while she was awake.

The mood swings were not the extreme jeckyl-and-hyde variety we experienced when she was a toddler, where she would convert to this screaming, thrashing, scratching ball of rage for up to 45 minutes straight. This time the moods were fast and furious. It was like watching little bursts of fiery energy escape from her. Some little thing would trigger her (or sometimes nothing at all) and she would cry or scream or rage or panic….as it was happening she could use her words to tell me what seemed to be the cause of her distress…I would hold her and hug her through the wave….she would take deep breaths and bring herself back. Then we could talk about the circumstances at hand, and often she was able to recognize that things were not as bad as they seemed at first. Watching her, it reminds me of an extreme case of PMS. PMS on steroids! She has been able to tell me about how the medicine makes her feel extra sad and extra mad. I think it’s amazing that she doesn’t always buy into the reactions she has. It reminds me of all that I’ve learned in my training as a coach and healer about how important it is for us to have a stepped-back, witnessing perspective on our emotions and the external circumstances we blame them on. I’m sure it’s easier when the emotions are this extreme, and clearly not rational, but Brooke has more ability to witness and breathe through the emotions than many adults I’ve met. This is a skill that could serve her very well in years to come and I am proud of her for how well she has handled this part of her treatment.

After all that, we were quite ready to celebrate her last dose of Prednisone last Thursday! She won’t have to take it again until Maintenance – and then it’s just for five days per month and at a lower dose. She’s been off for 4 days now, and the effects are starting to dissipate a bit. She’s not totally back to her usual easy-to-please self yet, but she’s getting there. And she’s very happy that she doesn’t have to take those nasty pills anymore! In a way, I can’t believe that part is over already. It wasn’t all easy, but it wasn’t hell. And wouldn’t it be awesome if a year from now, I could say that the first phase was the worst one!? That would mean that we’re already through the hardest part! That’s what I’m hoping for. 🙂

In and around catering to my steroidal daughter, I have also been very busy with other tasks and projects. Apparently part of psychologically preparing myself to get my girl through a year plus of chemotherapy is the onset of the nesting instinct. Kind of like when each of my kids was born, but even moreso, I think. I’ve been deep cleaning all the things I usually don’t even notice – the window tracks and window sills, vacuuming under the bed, putting not only all the sheets and blankets through the laundry, but also all the pillows themselves! Reorganizing all the kids’ toys and craft supplies, discarding things we don’t use anymore, and buying new things I think will work better. Some of it makes sense and some of it not so much. Suddenly it seems like a matter of urgency to change out the toilet seat with the toddler insert in the lid, even though Brooke hasn’t been using it in two years anyway. And I couldn’t possibly continue to tolerate the fact that the window blinds don’t operate properly, even though they’ve been like that the whole time we’ve lived here. It’s been very interesting to see what comes up for me in embarking on this journey. I’ve always been a bit prone to “Doingness” – list making, spreadsheets, obsessive analysis when making a decision. (Did I mention it took me over five hours of going back and forth before I could decide which bedspread I wanted to buy to replace my dry clean only one while Brooke is on treatment!? I finally had to just let Brooke choose so I could let it go.) My mind seems to believe that if it can gain ultimate control over all of the little details in my life, it will somehow make me more able to control, predict, or survive this journey. This is a very familiar pattern for me – one of my primary defenses. And there are times when it serves me well – like when I need to be on top of Brooke’s medications, central line care, and appointment schedule. It takes over sometimes though, and when it does it’s more troublesome than supportive. I end up feeling scatterbrained and non-present, forgetting things like where I put my keys or where I parked my car, or simple details or things I need to do. It disrupts my sleep and my self care and I end up stressing myself out over the things that matter the least. And it robs me of my presence and my ability to fully experience and enjoy these precious days at home with my kids because I’m up in my head worrying about inconsequential stuff. I suspect there is also a component of it that has to do with busying my mind with endless looping thoughts on trivial details, so that it doesn’t have time to think about the really scary thoughts of what could happen to my daughter. A big part of my work right now is to observe and explore what comes up for me in these intense circumstances, and discover a balance between surrendering to what is, and using my warrior-mama-take-control skills in ways that serve me by decreasing stress, not adding to it. I have some great support available to me to help me with this and whatever else comes up. I’ll keep you posted on how it goes!

This past weekend my parents came down to visit and spent all day Saturday helping me with all the various projects and tasks I’ve been wanting to do. We got so much done! Some essential things that actually impact Brooke’s care directly, some things that have been on my list for ages and don’t really have anything to do with cancer or chemo, and even some things that are probably not even necessary at all but just make me feel better about my space. Between the long list of random tasks I wanted to do and the fact that my cupboards, fridge, and freezer are literally overflowing in my attempt to keep everything on hand that Brooke could potentially end up craving and enough of it so we never run out – I think my parents must have thought I was at least a little bit off my rocker. It’s as if I’m preparing for the apocalypse! They were wonderful about it though. They just rolled up their sleeves and pulled out their wallets and helped me get everything just the way I want it! And then, as if that weren’t enough, on Saturday night they took me out to dinner at BJ’s where I discovered delicious gluten-free pizza!! I was wishing for that!! It was a great visit. We had a great time together and got a lot done. They went home this morning, leaving me feeling refreshed, rejuvenated, and prepared for the next leg of the journey!

Brooke is scheduled to go back into the hospital on Thursday, to begin her next phase of treatment. Apparently the chemo she’ll be getting in this phase, high does Cytarabine, is pretty hard core. They fully expect her blood counts to go way down and we will stay at the hospital until they start to recover, which her doctor expects will take about a month. I don’t know much about what else to expect yet – we have a conference with Brooke’s primary oncologist on Wednesday where we’ll learn more.

There is much more I want to share about the last few weeks – anecdotes about Brooke’s hair loss and her birthday and the many amazing and inspiring things she says as she walks this path with optimism and grace. Plus all the sweet and wonderful ways that Aidan is helping Brooke to get through this, and how she helps him too! I also want to get more pictures uploaded to the gallery – I have taken so many! My hope is that now that Brooke is off the Prednisone, things are more organized, and I am practicing getting out of my head, it will be easier to find time for blogging and journalling. We’ll see how it goes! 😉

Thank you to all of you who have pitched in to help me do this. The outpouring of support has been tremendous – running errands, bringing me groceries, signing me up for a meal delivery service, and picking Aidan up from school, donating to Brooke’s Healing fund to help us with expenses, sending gifts, cards, and messages that make us smile and feel loved, and being there with a visit or by phone when I need support. This situation is a lot to handle as a single mom (even though Brooke’s Dad and his wife have been really great and are taking a lot on too!), and I can’t even imagine how much harder it would be if I didn’t have the help, love, and support of my family, friends, and community. I am trying to express my gratitude to each of you individually so you all know what a difference you’re making, but if my busy, scattered mind fails in this, please know how much I appreciate you. 🙂