Many of you have heard the news already, but we would like to share with our entire caringbridge family. We will need all your love, support, help, and prayers.
We are overwhelmed, heartbroken, saddened and angered by the news we received this weekend. Our sweet, selfless Bailey has been diagnosed with leukemia.
Lily's journey brought tears of fear and the unknown. Now we are crying tears of anger, "why", and the known.
Tomorrow (Monday) we will learn more about exactly what type of leukemia she has. And a general idea of how to treat. Exact treatment protocols won't be known until after the induction phase of treatment based on how the leukemia cells respond to the first month. It's a big day tomorrow with a lumbar puncture, bone marrow aspiration, and placement of a picc line.
We welcome your comments, texts, emails, and prayers. Please know that we may not respond in a timely manner or at all, as we are focused on the well being of our entire family. Again we will try to keep our kids lives as normal as possible, so please continue to reach out to them and us.
Back in July of 2013, I wrote about Lily Dove, a little girl who played on our Jackson Area Rookie Girls Baseball team. Lily had been diagnosed with Leukemia the month before. I've followed her journey through a wonderful website, CaringBridge.org.
As someone who has not had to deal with having a child fighting cancer, I found reading her story made me realize what's important in life. Lily has become my hero as has her entire family, mom (Erin), dad (Ryan), older sister (Maddie) and twin (Bailey).
While not really a story that you would find on a company's website, the twists and turns the family have gone through deserves sharing. I'm posting two of the latest stories that Erin has put online. I hope that it gives pause. There are many families like the Doves who are fighting what seem insurmountable problems. Feel free to reach out to them and show them your support.
The first post deals with how Erin is handling Lily's fight. The second post is impossible to believe.
Lily's treatment and procedure went according to plan on Friday. Again, she chose not to receive anesthesia and remained awake for her lumbar puncture and intrathecal methotrexate (chemo). She also received vincristine (chemo) in her port. In addition, she started on her five day steroid pulse. We were all nervous on Friday, amongst many other feelings, even to the point of it being noticeable to our team at Children's.
After all this, Lily returned to school Friday afternoon. From Saturday through yesterday (Wednesday), Lily remained at home just taking it easy. She just wasn't herself - extra tired, but difficulty sleeping, a diminishing of her awesome-Lily personality, and just general feeling not herself. In addition, she experienced leg soreness intermittently during that time. This morning, she seemed exponentially better and is at school today.
Honesty. I have heard from many that they appreciate my honesty in these posts. Thank you. This one is no different, though this is kind of a blunt, selfish post. Honesty - the good, the bad, the real. And I'm not apologizing for my feelings, my reactions - to what is happening to Lily, to our lives, to countless other kids and their families.
Most of us don't like change and I guess I'd include myself in that group. I've always been a planner and mostly in control. But all that changed on June 21, 2013. I had NO control. As a mom, I couldn't make things better for Lily. I am supposed to make things better.
Everything changed. Our family changed. Our lives changed. Our marriage changed. I changed.
Several months after the day our lives changed, someone told me that I had changed (and this was not meant as a compliment). In defense and denial, I listed the reasons that wasn't true, in an attempt to salvage a friendship that essentially began dissolving on June 21, 2013.
It took me several months after this conversation to realize that I had indeed changed. Who would I be if I hadn't!? Emotionless. Soul-less. Hopeless. Compassion-less. Inhuman. Some other word that I can add "-less" to and make a new word. :-) I can only think of a couple things in the world that would be worse than hearing the words "Your child has cancer". (And I don't even want to think about those things longer than it takes me to type this sentence.)
So, mostly I am glad that I changed. I have learned so much. About so many things, including myself. If I had to describe in one word how I have changed, I would say "stronger". (I don't mean physically because exercise has certainly gone by the wayside.) :-) I feel stronger feelings. Most of this is good. I care stronger. I love stronger. I empathize stronger. I have stronger faith. I have more appreciation. I have a greater perspective.
Some of these stronger feelings are not good. I know it and I'm trying to manage them. I cry more. I worry more. I'm mad more. I'm angry more. Some of this anger is good because it's put towards helping raise awareness, making changes.
Other anger is not good. During the period in September that Lily experienced partial hair loss, I overheard a conversation at work with a young woman complaining about her bad hair day. It disgusted me. Still does. I literally felt like slapping her and telling her that at least she had hair. Social media and daily conversation is riddled with people complaining about their child's sore throat or ear infection. Makes me mad. If that's the worst thing that happens to your child, count your blessings! I know it's all relative. A good friend recently told me that these small problems don't seem that way to many others because they haven't had that "big bad" thing happen to them yet. I know. I used to be that person. I need to chill, yet still enjoy my greater perspective. Should I pray for those people, that they never have that "big bad" thing happen to them? But is that fair to them because they may never be able to enjoy this greater perspective?
Today I'm feeling mad. Mad that Lily was/is being treated with poison again. The poison that will save her life. The poison that has so many side effects (short term and life long) that Ryan and I couldn't even look at them. What choice did/do we have? We are saving our daughter's life.
On Friday, chemo was again put directly into put into Lily's back. This is the 16th time it's been put into her spinal fluid. And that's just one of the many types of chemo that she has/is receiving. I think I can be angry sometimes.
I guess for me, the first step is that I recognize this "stronger" anger, worry, and "madness". Next to manage it. Not apologizing for it though. My tears - I've mostly learned to manage these. At least to the point of them mostly flowing when I'm alone. (Well, I broke this "rule" on Saturday. Oops. I'm a long way from perfect.) My car rides to work have proved to be a great time and place to allow the tears to flow.
Thank you to everyone that just read this and listened to me totally vent. I promise my next post will be way less heavy. Thank you to those that have embraced my "change". The new "stronger feeling" me. Thank you to those that have said the right things, or said anything. Comforting simple words.
I could have written this article. It's true in every aspect that I have experienced. I hope that no one reading this will need it for another family, but 1 out of 300 kids are affected, so it may be worth saving. "Childhood Cancer diagnosis - five ways you can help a friend" http://www.childrenwithcancer.org.uk/Blog/five-ways-you-can-help