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!