This is Day 19 of my baby, Serenity, being diagnosed with and treated for Leukemia. Day 17 is here.
My last post came from the depths of the bottom of the emotional well. I had landed there with a huge thud and was experiencing emotional pain that was entirely new for me. The responses to that post in comments, in email, in person has been an overwhelming outpouring of support and reassurance. I know from personal experience that comments aren’t always read through so I want to repost one of my comments on that post.
OK, I’m doing MUCH better – I pretty much had a breakdown last night in which I was just feeling sorry for myself and not thinking logically.
Thanks to those of you who commented with words of support and reassurance, I appreciate it. I do know that what I do is valuable and I do see the connections for what I do in helping doctors etc. Thanks to those of you who also see that and pointed it out.
It was an anguishing night for me last night and I probably shouldn’t have blogged what I was feeling/thinking, but I committed myself to recording as much as I could about this process and what we were going through. Several people have commented saying that they appreciate our openess into our experience and for sharing raw emotion.
Today I’m back at it, but I have even more detailed plans of how to use my skills and knowledge to better serve the Cancer community. I’m actually pretty excited about a lot of it. I’ll be sharing more on that soon.
Thanks again everyone.
This whole process is a scary, emotional journey and I want to share it, it’s mostly for me – it helps me a lot to work through things here, to share things and get my feelings off my chest. But it’s also for those who will come down this path after us, I hope that in the future other cancer parents will find these posts and will be able to find some comfort and understanding for what they’re going through, as Adria and I have found on other blogs from cancer parents. It’s also for those of you who haven’t experienced being cancer parents – hopefully by sharing in our journey you’re able to feel a little more blessed in your own lives that you haven’t had to deal with this. I am very thankful for the supportive comments, email and other communication that came from the previous and other posts, I’m more able to deal with this because of all of you.
Today I had a great conversation with a fantastic Lady whose daughter had retinal cancer (I can’t remember the name of the cancer). Her daughter had to have her eyeball removed when she was a baby, she is now almost a teenager. We shared stories of dealing with initial discovery, the emotions that occur and reactions to them. We also discussed ‘owning’ your cancer (or in our case, owning your baby’s cancer). She has totally owned her child’s cancer – on her desk she has several eyeballs, I think they were created to be Halloween decorations, but for her they are symbols of her baby’s challenges and triumph. We talked about The Serenity Foundation quite a bit and our plans for it, she had some great ideas and input and I hope to have her involvement as we put the foundation together.
Part of mine and Adria’s evening routine has lately included going through comments, posts in support of Serenity and reading through the blogs/sites of other kids with Leukemia. We read every comment and post we find and share and discuss them, and are grateful for every one of them. When we visit the sites of other kids with Leukemia, we often show the pictures on it to Serenity and discuss it or share it with the other kids. Tonight we were reading through the story of Isabel, a girl who is now 5 and was diagnosed with Leukemia when she was 3. Her mom has kept a blog for the last two years and has written over 400 posts in the last 2 years. There are several very emotional and moving posts on it, but one of the most recent ones really struck a chord with me. In this post she talks about simply breaking down after realizing just how abnormal their ‘normal’ has become. Please go read it, I can’t do it justice here. I felt a small twinge of what she describes yesterday as Serenity just looked at me while I was giving her her medicine – and she just opened her mouth and took it. She gave up the fight, just accepted the nasty medicine and said “all done?”. On the one hand it was nice to not have to fight her on it, on the other hand it kills me that she has to accept it. Gibson, our 7 year old daughter, took over my computer and read through about a years worth of Isabel’s blog. She read for about an hour and a half and said she was sad that Isabel was sick like Serenity but that she thought Isabel would be ok. She was elated when I told her she could send Isabel an email and then she proceeded to write it all herself. This is our life now – the life of a family dealing with childhood Leukemia. In many ways it has brought us closer together.
On a different note, I want to again express gratitude to all those who have donated through the ChipIn widget. Those donations have made a HUGE difference for us as a family. Donations have ranged from $5.00 to an anonymous donation of $4,000.00 that brought it to the goal of $10,000.00. Every one of these donations, from $5.00 and up has meant a great deal to us and we’ve been astounded at the love and generousity that have been shown to us by each of these people. It has thus far kept us from feeling a financial crunch and has allowed us to adapt Serenity’s environment to fully accomodate her. I honestly don’t know how we would have paid for drugs, gas and dozens of other things up to this point were in not for the help of all of you. Now, as we stare at a rapidly growing pile of bills that currently total about $45,000.00 and increase daily, Jesse (our good friend who initiated the ChipIn effort) and others are talking about increasing the goal and redirecting efforts to try to cover our growing medical bills. I can’t tell you how grateful we are to all those who have helped keep this crisis from crippling our family.
Now for an update on Serenity. Tonight she threw up again for the first time in a couple days. She had been doing so good at keeping everything down and at dinner she had quite an appetite, she ate and ate. About 30 minutes after dinner, thinking that her nausea must be gone for the time, I got her evening medications ready. Usually, I would give her a dose of Zofran to calm her stomach and wait half an hour to give her the rest of her drugs. Thinking she was feeling good, I decided to make it easier on her and only make her take them once. So, I put together a cocktail of 5 different drugs and loaded it all into a syringe. I put the syringe in her mouth and as soon as I had pushed a tiny bit into her mouth I could tell she was going to throw up. Because I thought she was fine, I hadn’t gotten anything ready in case she threw up so I had to grab her and run to the sink, she ended up with it all down the front of her (and me). Once she was settled, I cleaned her up, gave her a sponge bath and then Zofran to settle her stomach. Half an hour later she was able to take her drugs and keep them down.
Coming back to the begining of this post, one of the things that we discussed in the conversation I had today was mortality. When Serenity was first diagnosed with Leukemia it was an incredibly scary thing (still is), we didn’t know if that was going to be our last day with her or what. I didn’t think I could deal with losing a child like that, I couldn’t even imagine it. Now, almost 3 weeks later, I’m in a different place. I don’t think she’s going to lose this battle, I think she is gonna kick cancer’s butt! But, if she lost the fight, while I would be devastated and torn up by it, I think I could deal with it. I think it’s pretty messed up for a parent to be forced to come to that realization – I also now know several parents who have had to. It’s kind of liberating. I’m prepared to deal with losing this fight – and that makes me all the more committed to NOT losing it. It turns the cancer more into a thing that we’re battling – instead of picturing it as a fight for her life, I can picture it as a fight against cancer. That might not make a lot of sense to most people, but I think it will to parents who have been here before us. On that first day when we found out she had Leukemia, I prayed for more time with her, prayed she wouldn’t be taken yet and vowed to do everything I possibly could to get her through this. I still pray for that and still vow that. Two and a half years is a very long, very uphill battle and with this new realization I feel I’m now fully prepared to take it on.
The story of Serenity’s battle with Leukemia begins here.
Don’t feel bad about writing down your angry thoughts. It’s part of the process. And believe it or not, it will help someone else down the road. Someone in 10 years will come across this journal when their child is diagnosed. And they’ll read your thoughts from Day 17. And when they hit that point they’ll realize they’re not alone in their thinking. They’re not the first to feel that way.
God continue to bless you all.
new here, and wanting to send love and strength to you and to Serenity.
i want to echo what Tricia above said, too – your job here is to be honest with yourself, because you are not only working through your own experience of all this fear and struggle and hope, but also laying a path that others may stumble on, and your honesty will help them far more than a rosy gloss ever would.
i lost my firstborn three years ago, though as a newborn, not to cancer. and what you said above about mortality resonated with me…there is liberation in facing your greatest fears, and no matter the outcome, eventually you will find strength in having done so. but i very, very much hope that for you the ending is a happy one, even if the struggle along the way is hard.
I’m a first-time visitor too, sent via a Twitter by an empathetic dad by the name of Chris Brogan who was reminding folks to count their blessings.
Which, after reading your posts, is exactly what I’m doing while I send you all my prayers and best wishes.
When my niece Emma was 7 weeks old she was diagnosed congenital liver disease. The prognosis was simple: transplant by first birthday or she was going to die. Those were dark days, and the months that followed were a mix of horrible (needles, surgeries, watching her get so close to death we began to prepare for the funeral) and wonderful (giggles were sweeter, time with her – and with family – more precious) ride, and the experience of life lived with tragic circumstances playing themselves out totally changed how I live my life.
Thankfully, Emma received her liver transplant Labor Day weekend that year, just hours after the mother of a 9-year-old boy (who died in a boating accident) chose to honor her son’s life by giving the gift of life to others.
It was one of the happiest and saddest of days for all of us, but most especially my brother and his wife. It’s the weirdest kind of weird to thrill at the news of imminent transplant when you know another family is somewhere wracked with loss and grief.
The whole experience, from initial diagnosis to happy end (Emma’s a sassy, smart 12 now) forever altered what I consider normal to be.
For me now the idea that there is a normal is abnormal…
Normal is what our lives are when lived fully no matter what’s in front of us. Normal is finding out what you’re really made of as life requires your deepest and truest response. Letting go of the standard definitions while facing my greatest fears chin high and heart wide open has made life a wild kind of ugly/beautiful, and me a more active participant.
Back then I was a mostly dissatisfied corporately employed and comfortably middleclass single 35-year-old woman then, and pretty sure I’d stay that way.
Today I’m wife to a widower and step-mom to 4. I left cubicle nation and began a whole new career and went out on my own, where my new husband joined me 2 years later. We work together and love every minute of it. And last year we moved from fast-paced suburban life to slow, simple and green lake-side cottage living.
The experience of facing intense feelings – and living through and beyond the possibility of tragic loss – liberated me to really live. To dare to live what’s most important right now, and give my energy and love to what matters most in the moment.
Till Emma, I was living for someday, putting off hard things and inconvenient truths. I didn’t get I wasn’t really living my own life and simply put I owe my freedom – and my happiness – to her illness and our collective journey through it.
Which is my way of saying that what you said about feeling like you’d make it through if your sweet girl die made completely perfect sense to me. A young child’s death is the last thing anyone wants to think about, but when life asks you to you just do. The only way past is through.
I’m deeply moved by your honesty and courage in just saying what you’re experiencing as you’re experiencing it. I wasn’t able to do that when things were going on for us. Maybe I would have if blogging was available then, I don’t know. But likely not: my heart was more closed then, and my own feelings more unfamiliar to me then than they are today.
But I’m really grateful that you’re doing what you’re doing – making the most of a medium that can uplift and normalize a process that’s painful and frightening and uplifting and just plain part of life. It would have made a big difference to the me that was back then, and today it’s reminded me of all the days I’ve lived since, and all the ways life is good and people are wonderful when the chips are down, what really matters is clear and we just plain let ourselves care.
Everyone who’s told you you’re laying tracks for those who may follow you is absolutely right: there is incredible power in hearing the truth. Incredible power in understanding that what you’re feeling when things are this kind of intense is natural and normal and just what is. It let’s you simply stop fighting feeling itself, let it roll like rain through a landscape, and then get on with living what matters most.
Bless you, Serenity and your family and friends. My thoughts and prayers are and remain with you all.
This is a first time here. I spent some time reading about Serenity’s journey and am tears. I, too, have a little girl who will be 2 in July. I will be praying for her and for all of your family. I just wish there was more that I could do.