Brooke Quote of the Day:

Me: “Did you take your meds Brooke?” (After leaving them on the table next to her juice)

Her: “Ya, I took them. I can’t resist taking them even though they’re yucky”

Me: “You can’t resist taking them?”

Her: “Ya, I can’t resist taking them because I REALLY want to beat cancer!”

For her birthday Aidan wanted to make Brooke “Hug Coupons” so she could get a hug anytime she wants. He stayed up after she went to sleep and made her over 150 coupons. Afterward he said “I guess it’s kind of silly since she gets hugs whenever she wants anyway. But I still think she’ll like them.” I love that kid. 

She’s bald, she’s beautiful, and she’s going home!!!!

Today’s been a big day!! This morning we buzzed off the last of our Pixie’s hair (there wasn’t much left), and this afternoon they sent her home!! After 17 days in the hospital (15 for me), we get to sleep in our own beds tonight!!!

I’m sure the doctors and nurses may have a different perspective, but as far as Brooke’s concerned, IV poles are for displaying her art work and handmade jewelry, and for taking rides down the hallway! 2 weeks of chemo down, 57 to go!

Today went so well!! Brooke made it through the 8 hours without food or drink without a single complaint. The lumbar puncture and intrathecal chemo went off without a hitch, and her chemo infusions were uneventful. When she woke from her sedation she was ravenous and thrilled to discover that the wait was over, and she pretty much spent the rest of the day eating. The steroid appetite has definitely kicked in and BBQ chips are once again topping the list of preferred foods. I have also lost count of just how many chicken soft tacos she’s put away this week.

This morning, as we were coloring together, Brooke told me again in a sweet, casual voice that she was going to beat this cancer and that she would do whatever she had to do to beat it. I know she was wishing she could eat when she said this, but rather than complain about it, she opted for this angle. And she didn’t say it to get any kind of reaction out of me – it was just a genuine comment while she was coloring. Incredible.

There are moments when I feel like the luckiest person I know to be going through this. To have such a clear and important purpose of guiding, supporting, nurturing, and learning from this beautiful spirit. All of a sudden my life has such meaning!

I know there are hard days ahead. Today was not one of them. Today was a blessing.

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!

Dear Family and Friends,

It seems that the Ballou-Buchanan tribe is embarking on another turbulant journey. Our little miss Brooke’s leukemia has relapsed. After 4.5 years in remission, I could hardly believe it when we got the news. And yet it’s amazing how quickly we fall back into the Cancer-curing mode. We’ve faced this before and we’ll face it again.

Over the past month or so Brooke has been getting headaches, nausea, vomiting, and tingling in her hands and feet. I thought she was experiencing migraines, which I was concerned about enough in a 5 year old! Her symptoms came and went and didn’t seem to be getting worse, so neither her Pediatrician nor her Oncologists felt this was a very urgent or alarming matter, but they were definitely looking into it. They were discussing consulting with neurology and they also wanted to get a CAT scan or MRI to make sure everything is ok with her brain. Last week at her regular oncology check up, the doctor told us that even before we move forward with those steps, she wanted to do a lumbar puncture (LP) on Brooke and check her cerebral spinal fluid (CSF) to rule out relapse. I thought this was ridiculously overcautious (Hello! She hasn’t had cancer in almost 5 years and you’ve been checking her blood constantly to make sure!) but I figured the best thing was to let the doctors run through all their protocols so we could all get on the same page about how to treat her “migraines”.

On Monday we took Brooke in for her LP. She had this procedure many times during her treatment, but it’s been 2 years since the last time. She has to have an IV placed and receives conscious sedation so she’s not aware when they poke into her spine and draw out a small sample of spinal fluid. For this we were at the Outpatient Infusion Center at CHOC, which was basically our home away from home in 2009-10, but we haven’t been there since Jun 2011. The nurses and aides were excited to see Brooke looking so big and healthy with all her beautiful blonde hair. They were saying things like “Wow. She looks so great! Did you ever think you would get to this point?” It was surreal for me to be back there. It felt like ancient history and only yesterday at the same time. Amazingly, Brooke didn’t remember any of it. None of the nurses and nothing at the Infusion Center was familiar to her.

The procedure went well and I took her home, a little groggy from the sedation but feeling good. Later that afternoon, Brooke’s oncologist called me to say that the results had come back, that they were not good, and that she needed to meet with me and Brooke’s dad the following day. At the meeting yesterday morning she told us that they had found quite a lot of leukemia cells in the CSF sample they took. This means that Brooke has relapsed in her central nervous system and not her blood, as far as we know. Apparently there were some leukemia cells hiding out somewhere in her CNS that got missed during her treatment and in the past 2 years that she’s been off treatment, they have multiplied and are now crowding out her CNS and putting pressure on her brain.

Remarkably some of this is actually good news. The fact that the relapse has occurred in her CNS, not her blood, and the fact that she was in remission so long before she relapsed both suggest a high probability of survival. To get her back into remission though, they are going to have to hit her even harder than they did last time. The current treatment plan calls for 59 weeks of intense chemo followed by 2 years of maintenance. Brooke will most likely be out of school for at least the remainder of the school year. She will have teachers who visit her at home or in the hospital to help her keep up.

She was admitted to CHOC Oncology Tuesday night. They’ve done a multitude of tests and scans on her already and today she’s scheduled to have surgery to replace her central line, and while she’s under anesthesiology they are also going to do a bone marrow aspiration to confirm that there is no relapse in her blood and bone marrow, and they will start her chemo treatment with a the first chemo injection into her spinal fluid. Brooke is expected to be in the hospital for about 3-4 weeks or so, and then we’ll be able to take her home. She will have medications to take orally at home and will come into the Outpatient Infusion Center about once a week for treatment. The side effects are expected to be more severe this time than they were 4 years ago, both because they will be giving her higher doses and because a lot of chemo will be administered directly into her CNS, which will result in headaches, nausea, back pain, and issues with balance and coordination. Her team feels confident however, that the treatment plan will bring successful results, that we will be able to knock this cancer down once and for all, and that Brooke will come out the other side without major long-term side effects.

Seeing my child through cancer is the most difficult thing I have ever done in my life and the news that I am about to do it again dealt a heavy blow. This is absolutely the last thing I had expected or would ever want to be doing this year. And yet, adjusting to the reality of it has been remarkably possible. We’ve done this before. We know what it’s about. I don’t want to be facing it again, but I do know how. There will be many, many hard days, many things to worry about, and many unknown challenges ahead. I know how to surrender to it though. I know that fighting against it and clinging to a “why us” perspective only makes it worse. I know how to wake up every morning and deal with what’s in front of us. I know how to take it day by day (or sometimes hour by hour), surround both my children with all the love and hope and positive light I have, and just keep moving through it.

On Tuesday afternoon Nick and I met with the kids at a park to tell them what was happening together. We explained very matter-of-factly that Brooke’s cancer came back, that none of us expected that to happen, and that we are going to have to do a lot of things to heal it really well so it’s gone for good. I told them that we were all going to work together on this, and that it would be sort of a crazy family adventure. I explained to them that Brooke had to go into the hospital that night and that she would be there for about a month. Brooke took the news very well. Her response was basically a smiling “Ok Mommy” to everything I told her. Having very little memory of the experiences she had with this the first time around, she was ready to follow our lead. When we got home she packed up a bunch of toys and books for her trip and she has approached her admission as if she were on vacation at a luxury hotel! CHOC’s new cancer center is pretty swanky and they have so many fun things for patients. It’s all about her here and people come through her room all day long showering her with attention and a fair number of prizes and gifts. She loves her room, the playroom, the fact that she can order room service off the menu anytime she wants, that she can walk around the halls in her pajamas (or better yet, ride around on her IV pole!), and that she has her own remote control and mini refrigerator, which they keep stocking with apple juice. She also thinks it’s hilarious that she gets to sleep in the big bed and I have to sleep on the little one. Brooke fully understands that this is a big deal, and she has moments of tears and lament. And the rest of the time she approaches it all with an inspiring attitude that seems bent on finding the positive in everything. Her amazing spirit makes it easy for me to keep from spiraling into despair myself. Afterall, her perspective is nothing but the truth. We’re here. This is happening. Nothing to do now but move through it. And we might as well find some reasons to smile along the way!

Aidan is having a more difficult time adjusting to this reality. He remembers a lot about our journey in 2009-10 and he also understands the severity of the word “cancer”. He is very worried about his sister having to survive everything they’re going to do to her and he is concerned about her prognosis. He has been processing a lot of his fears and feelings with Nick and I and his clarity and compassion are amazing. He asks questions like “So is this the same cancer as before or is it new cancer?” and “What happens if she can’t beat it again?”. He has been doing everything he can think of to be good to his sister and they both had a good cry on Tuesday about having to be apart from each other so much. They asked Nick and I to promise that he could come visit her every day that she’s in the hospital, and we agreed to make that the plan. He got to visit her yesterday and I think that seeing how bright and sunny she still is, even now that she’s here, and that there are so many fun things here that she’s excited about, helped him feel a little better about what’s happening to her. He knows it is going to get a lot harder for her and he is worried about that, but he’s looking for the bright sides too, and is full of hope and ready to support her through this.

Already I am deeply touched and grateful for the love and support that is coming our way. It means so much to not feel alone in this. My mom drove down through the night on Tuesday and was here with me yesterday. Nick and his new wife, Erika, have been wonderful and it is a huge plus to feel like we are all on the same team with this. I know it means a lot to Brooke too, to have her family all around her. We have been receiving many messages of support and love. It feels like Brooke has a huge cheering squad around her, rooting for her and sending her light. I know that many of you will be going through this with us – in fact and in spirit. It is my intention to get a blog up soon where you can read updates on our journey. As soon as I do I will send out a link. Please forward this message along to anyone who would want to know what’s happening. I don’t have everyone’s email addresses here at the hospital with me.

As I was driving Brooke to the hospital on Tuesday night she said “Why did my cancer have to come back!?” in a sort of oh-man-what-a-bummer tone of voice and then added “Well, I will just have to beat it again” with sweetness and lightness and utmost confidence. I think that pretty much sums it up! It’s here. It sucks. Now let’s heal it!