As we enter the middle of September, I love seeing all the gold supporting childhood cancer. Cancer is an ugly beast that tries to steal everything it can. Not only for the patient, but family and friends of the fighter. It rips away strength, energy, joy, time, laughter, patience, money, relationships and even hope. It is hard to watch your loved one suffer and struggle, but it is heartbreaking when you have to watch your child be poked, hooked up to numerous machines, vomit violently because of their medicines, cry in pain and whither away to almost nothing. And all you can do is watch, praying the pain will subside, the vomiting will stop and their strength is regained.
For over a year, Mallorie has been able to live a “almost” normal life. With the exceptions of her daily oral medicines, weekly blood draws and methotrexate shot, monthly IV chemo and quarterly spinals, she is finally able to be a 13 year old. She has not been hospitalized in over a year. She struggles often with headaches and upset stomach, but to look at her, you might not even be able to tell she is being treated for leukemia. Her hair is still thin, but is slowly growing. Unless she wears a swim suit, you can’t see her port scar. And you would only notice her moaning and sluggishness she has after a full day if you were here at bed time.
Even with all the good we are experiencing in our journey, I am troubled. I am troubled because I find myself forgetting what she went through in those early months of treatment. The long, sleepless nights. Constant worry and fear of what was going to happen next. The endless hospital stays. All the tears. I can’t help but think, how can I help spread awareness of this horrible disease, if I, a mother of a child fighting cancer, can’t even remember our own experience? I don’t want the past 639 days to slip away and become I distant memory, yet I don’t want cancer running our lives. And honestly, it’s not even something I think about every day. Maybe that is normal? I am not sure.
Mallorie’s treatment is broken up in different phases. I don’t have her road map (term used for a treatment plan) in front of me, so I can’t remember all the different phases, but you can be sure they all sucked. She is currently in the maintenance phase and thinking back to when she was first diagnosed, I can remember saying we would never get to the last phase. It seemed so far away. And I can still hear her oncologist saying, “Just take it one day at a time”. And now we only have 29 weeks left of treatment. That’s only 29 more shots, 29 more labs, eight more IV chemo sessions and 2 spinals. That has me pretty freaking stoked.
Last Saturday, I was connected to with a mom who’s son was diagnosed with leukemia in June. We chatted on-line with me sharing Mallorie’s story, me reading her son’s story, her asking me questions and me sharing our experiences. It was one of those moments where you just know your journey has meaning and purpose. I remember being the one on the other side of the chat. The one who was up all hours of the night researching and worrying. Even though leukemia isn’t always on my mind, when I do think back and relive our experience, emotions come flooding in. I experience the pain, sorrow, and worry. I can smell the hospital. I start to feel my body ache from lack of sleep, roller coaster emotions and remember how for months I functioned on auto pilot. But in the same breath, I sense the warmth, love and prayers so many people provided. (And let’s not forget Joni’s scones!) And now, I get to be someone that gives support. That is a priceless gift I do not ever want to lose or take for granted.
Before I became a “cancer mom”, which I think is a legit term, I never concerned myself with kiddos who were ill. Of course, I would give to causes that were brought to my attention, but I never lost any sleep over it. I would feel sad and even thankful that all my kids were healthy, but not once did I put myself in the parent’s shoes. I simply would go about my life, striving to be the perfect little family with no issues. Oh how Dec 15, 2013 changed me. Not only did Mallorie’s diagnoses slap me in the face on how precious life is, but it opened my eyes to how freaking messed up we are. Not just in the form of cancer, but in life as a whole. The things I would stress over and put as the priority where simply things that fade. We are blessed and I know this. I get to hug my daughter (all my kids) every single day. Many parents are not so lucky. Cancer and other illness have taken their precious gift and they only have memories to hold. I have no idea the pain and loss a parent feels over losing a child, nor do I ever want too. But I have seen the fear in a mother’s eyes and witnessed the agonizing pain of a child gone way to soon. That alone is unbearable.
One in 330 children will be diagnosed with cancer before they are 20 years old. That may not seem like a big number, but what if your child was that “one”? I sure didn’t think any of my children would get cancer. Awareness is crucial to ending this horrible disease. As I close this post, since September is Childhood Cancer Awareness month, I just ask you to take a moment and pray for the kids and their families that are dealing with cancer. Don’t just pray for the child, pray for the parents and siblings. Pray for the grandparents, caregivers, aunts and uncles. Everyone in the family has to cope with the ugly monster. In showing support of Childhood Cancer, it’s not too late to wear gold at least one day this month. If you do, we would love for you to show us. If you have FaceBook, you can like our Team Mallorie page and post a picture of you sporting your gold. It doesn’t have to be a cancer shirt, just something gold. The link below should direct you to our page. You can also follow Team Mallorie on Twitter where we periodically share information on childhood cancer and other random things. Usually whatever Mallorie tells me to post. So yes, it can be random. LOL!
Thank you for reading and may your day be blessed.