HALFWAY!!!!! Today Brooke completed her 28th treatment week of the 56 weeks of intense chemo she has to get through before she gets to Maintenance. It took 8 months to get through 28 weeks because of all the times they pause to let her counts come up…but we’re finally here. HALFWAY!!!!

I am experiencing an interesting half-empty/half-full dichotomy in response to this, whereby part of me is saying “Wow, alright! We’re already halfway through it!” at the same time that another part is thinking “WTF?? We’re only halfway!?”.

But whether we’re only or already halfway, we’re still ticking off the weeks one by one and someday we’ll be done!!

Brooke is still doing great, with great spirits and minimal side effects. Aidan is doing well too, overall, and I’m only a little more grey than I was in September.

We had a special dinner to celebrate tonight and the kids each got a small prize to commemorate our progress. Brooke said “Wow, I didn’t know if I could make it this far, but I did it!!”I am so proud of both of these kids. They’re amazing people to be around and they bring out the best in me! 

Miss Brooke is losing her hair again. It’s totally unpredictable. I don’t know why it’s been growing in throughout her treatment over the past 3 months, or why it’s falling out now, when she hasn’t even had chemo in a couple weeks. But there you have it – the little hairs all over our clothes, pillows, and furniture foretell that we’re soon to trade the punk-rock-might-be-boy look for the iconic I-have-cancer look.

I don’t know why it makes me so sad…it’s such a small thing in the scheme of all this!

Super big THANK YOU to our friends for setting up a fundraiser site to raise money to help us get through the rest of Brooke’s treatment! We still have 8-9 months before Brooke gets to Maintenance, and things have been pretty tight with me not working or seeing clients while Brooke goes through this, so this could make a huge difference!! Huge thank you’s to the five donors who already responded!! I am so blessed to be surrounded by such wonderful friends, family, and community! Please share the link below and help get our story out to anyone who may be moved to donate to our family!! Thank you all!! 

Upon rising my sweet Brooke says “Do you know where my Life is Good shirt is Mommy? I want to wear it today because it says ‘Life is Good’ on it and life IS good!”

Heading back to CHOC today for another brief admission – treatment week 22 of 56 starts today. Almost halfway there!!

Whew! Made it through 5 straight days of chemo at the outpatient clinic. Long 6-8 hour days plus logistics to get Aidan to and from school and keeping up with homework. We made it work and Brooke is doing great! Some mild nausea, but no vomiting and still eating great! High spirits and high energy! And now we all get a couple weeks to recover until Brooke’s next chemo which will be sometime after Christmas, depending on her counts. Aidan is doing very well this week, after a couple of tough weeks before that, and we are all excited to spend Christmas together at home this year! Thank you to the friends who helped me juggle it all this week!! I don’t know where I would be without the help of my friends and community! 

We’re out!! Brooke was released from the hospital yesterday, after 30 days on the inside! Almost twice as long as we’ve ever stayed before, we were very ready for this visit to end!! 9 weeks down, 47 to go!!

Today we are celebrating the return of Brooke’s eyesight!! After over 48 hours with her eyes shut tight, unable to open them due to painful irritation from the chemo coming out into her tear ducts, things finally improved yesterday evening!

With her head still covered by a blanket, she excitedly told me that she was able to open her eyes for a few moments. After about 30 minutes she was able to keep one eye open, though it was still quite light sensitive, and the other eye was still too painful to open. I rigged her sunglasses to hold a wad of tissue against the sore eye and protect the other one from too much light, and she was finally able to get on her new iPad! This was a long time coming! On Monday, she had received a very exciting and special gift from a friend of her 1st Grade teacher who had heard about Brooke’s hospitalization and the fact that her brother was missing her so much. This generous soul had an extra iPad that she sent along for Brooke so that she and Aidan could connect via FaceTime while she’s in the hospital! Aidan was so excited to bring it to her on Monday, and spent over an hour searching for “free games for girls” in the app store for her. Brooke has been anxious to play with it, but had to wait two full days before her eyes were up for it!

So last night was very special for her, and for Aidan too, who finally got to see her on Facetime! Throughout the evening Brooke’s eyes got better and better and by the end of the night, she was able to keep both eyes open, though her right was clearly still irritated. This morning it was like the whole thing had never happened! We had blinds open and lights on all day long! And Brooke was playing with the iPad for most of her waking hours, and had another long FaceTime session with Aidan and her Dad.

There are some other big challenges underway (fevers, issues with her central line, and very low appetite), which I may write more about soon. Tonight though, I am celebrating a win! I feel it is no surprise that the health and comfort of her eyes bounced back so soon after I posted about the challenges she was facing. All the prayers, healing thoughts, and love coming at us must have made an impact! Thank you all and keep them coming please!!

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!! 🙂

Yep, that’s right. After 28 days of treatment there are no detectable signs of cancer in Brooke’s blood, bone marrow, or cerebral spinal fluid! This means that the treatment plan is working, the cancer has responded to the chemo, and that we can let go of a lot of scary “what if’s”.

Brooke took the news with a knowing nod of acknowledgment (“Yes, I knew that would happen”) and lot of questions about why we have to keep going to appointments and taking meds if she’s already healed. …if only it were that easy. The protocol for Brooke’s case still calls for 51 weeks of chemo and 50 weeks of maintenance. Remission doesn’t mean that we change anything about her treatment protocol – it’s confirmation that her protocol is working!!

Thank you to everyone who’s been sending positive thoughts and prayers for Brooke’s Healing! We are definitely moving in the right direction!!

Also, on an unrelated note, Brooke’s CBC numbers were not quite as high her Doctor wants them to be to start the next phase of treatment, so her admission to the hospital has been postponed. We’ll go back to clinic for labs and if she makes counts then, we’ll be admitted on Monday. This is A-ok with us. We’re happy to have another weekend at home before we start our next stay. 🙂

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. 🙂