Maintenance is underway! The first couple weeks include daily cranial radiation treatments, which were scary at first, but easy peasy now. 3 more to go and we can add that to the list of things we don’t have to worry about anymore!
Transitioning back to “normal” life and outpatient treatment involves some challenges for each of us, but overall we are all still just so happy to be home together consistently again!
Brooke is gradually giving up her post as cancer princess and getting used to sharing, going along with what other people want to do once in a while, and not getting prizes for EVERY single thing she does.
Aidan is still finding his groove at school, but he seems much happier and less stressed than he was a couple of months ago, and he is getting more understanding from the educators at his school too, thanks to some really wonderful intervention by his amazing therapist!
And I’m trying to re-enter the world little by little. There is still so much to manage, but I’m starting to feel a little less depleted, find more time for myself, catch up with friends when I can, and even beginning to think about when and how to revive my coaching practice! It’s pretty exciting to even be able to think about such things!
Shout out to my awesome mom and greatest supporter, Robin Ballou!
I can’t even imagine how I would have gotten through this crazy year without her. In June she left her job, retiring at least 6 months earlier than she had planned, left her home, her husband, her son, her friends, and her garden, and came down to Long Beach to help is however she could.
My one-bedroom apartment is pretty cramped when it’s just the 3 of us here, add a fourth and it gets downright comical! We decided early on to pretend we’re camping. From that perspective it feels pretty roomy! I certainly have not been able to put her up in utmost comfort, but Mom figured out how to fit herself into our space and our lives with remarkable grace.
Tirelessly she has been here to fill in so many of the cracks and catch the balls I drop (or couldn’t get in the air in the first place) while we all got Brooke through so much time in the hospital. She’s been getting Aidan up and to school all year, despite the 35 min drive. She’s done basically all our laundry, dishes, and shopping for 6 months. She’s been bringing us food and clothes and supplies at the hospital, staying nights with Brooke so I could have time with Aidan, relieving me for breaks and walks and naps and phone calls and therapy sessions and time with friends. She’s helped me repeatedly pack and unpack, decorate and de-decorate, organize my clutter, clean up vomit, and collect multiple stool samples. (Yep!)
One week she got a bad virus and couldn’t take Aidan or visit the hospital. She still did errands for me, came and got our dirty laundry (I met her in the parking garage), brought it back clean, brought us food, and had the carpets in my apartment shampooed.
She’s been here to make Brooke smile, tend to her very specific whims, play with her, and cheer her on.
She’s been here to rub my shoulders, bring me tea, tell me that I’m doing great, encourage me to keep going…and to let me cry on her shoulder on the days when I felt like I couldn’t.
My biggest gratitude though, is for what she’s done for Aidan. These past 16 months have been quite challenging for him and before mom came, whenever Brooke and I were in the hospital, it was incredibly hard for him. He would be at his Dad’s, (where he is 50% of the time anyway), but he missed us both, worried about Brooke, struggled at school, had trouble sleeping, even had a few panic attacks. He loves Brooke more than he loves his teddy bear (and that’s saying something) and he does not like to be away from her. He understands the seriousness of her diagnosis and her treatment. He has had to walk through some VERY difficult emotions in all this. Aidan has a great relationship with his Dad and likes spending time there, but he’s not used to being away from me and my home for weeks on end and Nick has a very busy work schedule. Having Nana here meant that Aidan had all his usual weeks at my home, with a loving, doting grandma who does things a lot like I do. Plus it meant a lot more afternoons and nights that I could be home with him. Not to mention the fact that my sanity was more intact in general, so the time I did have with him could be positive! During their time together, Nana and Aidan really got to know and love each other well, read special books every night, developed special jokes and rituals…(honestly it even made me a little jealous at times ). Together they even refurbished Aidan’s favorite, very well-loved teddy bear with a deep cleaning, fresh stuffing, and a new bow tie! He was thrilled!
Mom, I know I’ve been too preoccupied, scattered, and stressed to fully express all the gratitude I feel for you being here, but I do recognize what a godsend you have been to us. I truly don’t know (and would rather not try to imagine) what this would have been like without you. Thank you for giving up your first 6 months of retirement to work your butt off for our cause!
Brooke’s final inpatient chemo (HD Methotrexate) is in process! 12 more hours and she’ll be done!!!
We should get released this weekend. And the rest of her chemo for this phase and for Maintenance can all be given outpatient. After this we’ll only have to go to the hospital if she gets fevers or other complications.
53 treatment weeks down, 3 to go!!!! (And then 50 weeks of Maintenance….no problem)
Oof. Yesterday was one of the most challenging days of our 5.5 year history with leukemia, and as usual Brooke moved through it with grace and strength and light.
She was admitted back to CHOC on Tuesday with the intention of starting her final cycle of treatment before Maintenance, but upon arrival, during a routine dressing change, we discovered that her central line had moved out of position. Her chemo had to be postponed and she was put on the add-on list for surgery yesterday to remove her Broviac line and replace it with a port-a-cath. The plan has always been to switch to a port once she got to Maintenance, but since her Broviac was no longer useable, we had to make the switch a few weeks early.
Although this was my 5th time sending my daughter off to the OR, it hasn’t really gotten any easier. And the last-minute, semi-urgent nature of being an add-on did not help. Every other time it’s been scheduled in advance and we had a surgical consult several days prior to it, and lots of time to prepare. Yesterday was a different sort of experience.
She wasn’t allowed to eat or drink past midnight, to be ready for the surgery whenever they called us. My poor girl was super hungry, but she didn’t complain and passed the time cheerfully watching TV and playing a game with her toy mermaids in which the storyline included a lot of eating! The mermaids talked to each other about their favorite foods, made cupcakes, and went to restaurants.
Thankfully the wait was not as long as it could have been – they called for us at noon. Unfortunately the surgeon was insisting on a lab draw to make sure her platelet count hadn’t dropped significantly in the two days since the last draw. Our patient nurse spent 30 min trying to get blood from Brooke’s stubborn Broviac, to no avail. So that meant adding a poke in the arm to her challenges.
Brooke was amazingly cooperative through the poke, transport to pre-op, getting a dose of “relaxing meds”, and even smiled and waved cheerfully as they wheeled her off to the OR. Seriously, what a light beam she is!
I was a bit uneasy about the procedure because her surgeon had a lot of difficulty getting her Broviac line in when she relapsed and that’s why we haven’t replaced it in the last 14 months, even though it’s been notoriously ineffective at giving blood for lab draws and she’s had to have infusions of anti-clotting medicine pretty much every week for months. She only had one more vein that could be used for a central line so we have been saving it for the port. And so with all this, it was difficult to hand her over to a new surgeon, unfamiliar with her case. I gave the surgeon all the info I had though, and had to trust that it would all be ok.
I sat in the waiting room with my mom, Brooke’s Dad, and Aidan for 45 minutes before the surgeon came out to let us know all was well. She had tried and failed to get a line in on Brooke’s left side and said it must be clotted off (just like I’d told her), but she tried again on Brooke’s right side and had no trouble getting the port in there.
After another 20 minutes or so, they brought Nick and I back to see her in recovery. She woke up gradually and said she felt ok. She got really irritable and impatient at this point though. It was after 3:00 and she hadn’t had anything to eat or drink yet, she had monitor leads stuck all over her body, and they were telling her they needed to do another chest Xray and wait for transport before she could get back to her own room, remove the leads, and finally eat. My little lioness was very clear and vocal about her impatience about all this, and honestly I felt proud of that too. I mean really, enough is enough!
Soon after, back in her room, she shamelessly shoveled handfuls of grated mozzarella into her mouth while the nurses fussed with her lines and removed her leads. And once she’d changed out of the hospital gown and everyone left, she and I snuggled into her bed, watched a new Barbie movie, and chowed down! She fully celebrated her regained right to eat with a huge feast of cheese, chips, grapes, mini pizzas, and chocolate.
Despite the healing site in her chest where the Broviac was removed, 3 incisions they made to get the port in, and 4 needle-poke sites, she felt pretty good last night and was able to walk down to the gift shop to select a prize for all her victories!
All is well, and among the things we’re grateful for is that Brooke now has a beautifully functioning port! After 14 months of fighting with the Broviac pretty much every week to get labs, we can barely remember what it’s like to have a line that just works!
Today Brooke is a pretty sore and also nauseous from her chemo, which started last night. Her spirits are good though and she’s healing up. It was a rocky start but her final cycle is off and running! 50 weeks down and only 6 more to go!!!!! It looks like Brooke will be home for Christmas and ready for Maintenance by New Years!!
To all my beautiful friends: I know I have been very difficult to get ahold of in the past few months (or the past year!) and that I owe phone calls and visits to many of you. I’ve missed milestone birthdays, wedding celebrations, baby showers, graduations, and other special events. I hope you all know that this is not for any lack of love, or desire for connection on my part. I miss you all and am looking forward to when we can spend more time together.
Even though it’s been over a year since I disappeared into cancer treatment, it still completely defines my life and my time right now. This phase of treatment especially, which started in June and will finish in December, requires so much of me. Brooke is in the hospital more than she’s out, and at clinic constantly in between admissions. In both places I have to attend to her high needs as well as nearly constant activity with nurses, doctors, clinical assistants, charge nurses, pharmacists, child life specialists, her home school teacher, our social worker and case manager, cleaning staff, and volunteers – all of whom have Brooke’s health, comfort, and happiness in mind, but who sometimes seem somewhat unaware of how exhausting all this activity is when taken together…not to mention the maddeningly frequent beeping of her IV pole. In this environment I have found phone calls, emails, blogging, and anything else that requires me to be able to think in complete sentences to be an exercise in frustration. (I had to put a do not disturb sign on our door just to write this post.)
On top of this, Aidan is really struggling in this phase, being away from Brooke and I so much. He has a lot of sadness these days and is struggling at school. Thankfully my mom is here much of the time and she gives him extra TLC, gets him to the hospital as often as possible, and stays with Brooke when possible so I can go be with him. When I’m with him I try to give him as much presence and love and attention as I can.
On the rare opportunity that I have to take time for just me, I am often so overstimulated that I need to spend it in as much silence as I can find. Or talking to my therapists.
Even my closest friends are not hearing from me so if you’re on that list – please don’t think it’s personal. I miss you all and the isolation is one of the many challenges of this journey.
The best way to reach me during this time is by text – it is easier for me to multitask amidst the chaos. Hospital visits are also welcome – please text me first. Also, feel free to continue to try me by phone – I love getting your calls, even when I can’t answer or return them. It’s good to know I haven’t been forgotten and it’s always easier to pick up a ringing phone than to find a moment where I feel like I have time to make a call. So call at will, but please accept my apologies if you don’t hear back from me til January!
46.5 weeks down, 8.5 to go!! The light at the end of the tunnel is getting brighter!
44 treatment weeks down, 12 to go!! I think I can, I think I can….
Brooke’s treatment is paused again this week as we wait for her counts to recover. She’s scheduled to be admitted next Tuesday so we can knock some more chemo weeks out of the park!! This girl is simply magical the way she continues to dance right through everything. Even with a front row seat to her amazing perseverance and propensity for joy, it’s still incredible!
Brooke, I feel so very blessed to be on this journey with you and to be the one who’s hand you reach for as you walk this path. You are an angel in my life, teaching me so many things, and shining your light and inspiration on me and so many others! I love you more than I can express. Even on the days when I’m pulling my hair out from exhaustion and feel like I can’t possibly cater to one more request! I do appreciate how well you can name your needs and desires most days and am constantly impressed by the creative coping methods you come up with so that you can keep choosing joy. You are phenomenal.
And to Aidan, the unsung hero in our family. What a prince you have become. You are so kind and sweet and decent to me, your sister, and your nana. You watch everything revolving around Brooke and all the attention, gifts, and catering she receives, and instead of jealousy (of which I have seen not one moment of), you are her biggest supporter! And mine too. Not only do you do everything that’s asked of you with such a great attitude, but you constantly look for ways to do more – you carry things for me, open doors, give hugs and shoulder rubs, and make it your personal mission to make your sister smile anytime she is not. I am so proud of you and I love you so much it aches.
How did I ever get so lucky to be mother to these amazing people on such an incredible journey? I know it looks like a nightmare from the outside, and believe me there are many harrowing moments, and breakdowns and tears and things to grieve. Through it all though, I really am incredibly blessed.
Today is Brooke’s 20th day in the hospital! She’s doing great but also really looking forward to going home – which we expect to happen in another 5-6 days! I’m home with my special boy tonight – only my 4th night out in those 20 days! I can not even express how beautiful the sunset and the ocean breeze was for me tonight! …and the birds, and the moon, and the trees, and the clouds, and my home, and my bed, and Hole Mole, and my son’s laugh…. This whole experience inspires SO much gratitude!!!
Here we go!!! 32 treatment weeks down, 24 to go til Maintenance!! These last 24 weeks (a treatment phase called Intensification 2), she will be in the hospital more than she’s out, just due to the high doses of chemo she’s getting and how much it will compromise her immunity. She moved back into CHOC on Monday and will be here for 3-4 weeks to start with.
This phase is a marathon I’ve been dreading in many ways and there is considerable relief in finally getting started with it. The sooner we start, the sooner we’ll be through it!
Brooke is so good at looking at the bright side, I’m not sure she even remembers that there is a not-so-bright side. She’s been packing up favorite items for the last week and when we got here on Monday, she lead the way to the 5th floor, danced down the hall, gave her nurse a big hug, hopped up on the bed and pulled out her central line to be hooked up to the IV before her nurse could even ask her to!
Aidan is also in high spirits, and is ready to take on an adaptable schedule for the next few months. He was reminding me on Monday that this is all going to be ok and will bring us gifts in the long run.
One huge saving grace for this phase is that my Mom will be here for most of it! She arrived last Wednesday to help us prep and is planning to be back and forth from her home in Sacramento for however long it takes us to get through this phase (probably 7-8 months). It will make such a huge difference to have her here to take shifts at the hospital so I can get breaks and time with Aidan, to do things with Aidan while I’m here, and to support us all through the challenges! I am extremely grateful that she has put her life on hold to help us with this. I really don’t know how I would do it without her!
). Together they even refurbished Aidan’s favorite, very well-loved teddy bear with a deep cleaning, fresh stuffing, and a new bow tie! He was thrilled!
