Childhood Cancer – Reasons I’m All Too Aware

Exhaustion is frequent. Joy is present every day, even on the days that are full of tears. Tremendous heartache appears often when you watch your child suffer and you can’t take their place, but can only hold their hand through it. Disappointment creeps in each time she misses out on something else because of cancer and treatment – like knowing how much she would love to be away at college, decorating a dorm room, and meeting a new roommate – instead of starting treatment right now. There’s fear of the unknown, of what might come, and how she might continue to suffer. Stretched thin, overwhelmed, yet still blessed by new friendships and prayers.

These are just a few of the feelings that Heather Barr feels on a daily basis. Heather is a mom to Sarah – a precious 19 year old who has been fighting cancer (Ewing’s Sarcoma) for seven years. About a year ago Sarah relapsed for the 3rd time. So she fights again. Her whole family fights again. They go through the fevers and the chemo and the hospital visits and the infections and the rashes and the fear all over again.

I met the Barr Family at the beginning of their cancer journey with Sarah because my heart was completely opened to this world of childhood cancer by my husband, who happens to be a childhood cancer survivor. When Jay was a cancer patient he attended a camp called Camp Sunshine from the age of 10, and even when we met in college he was still returning every year to be a camp counselor. He felt like it was his home, his second family because they had gotten him and his family through some of his darkest days. It’s this amazing place that allows kids to meet other kids going through the exact same thing – and even when they are bald or sick or scared, they get to come to a place and laugh and forget all of that. Camp Sunshine does the same for moms who need other moms to relate to their tears and frustrations, or siblings who need the attention that is sometimes scarce at home.

Jay brought me into this world of Camp Sunshine – this place that literally wraps their arms around every member of a family dealing with a childhood cancer diagnosis and says “I’m here, let me love you.”

Every mom that hears the words “your child has cancer” – well, they are heroes in my book. Jay’s mom, Barbara, said that when Jay was first diagnosed she went into shock, next she was numb, and then she went on autopilot. “When your child is sick it is amazing how sharp your mind gets at remembering anything involved with his illness, my sharp mind was a God thing!” Everything got put on hold including careers, plans for a third child, and a move to San Francisco. This really changed the course of all our lives. “I do recall Jay saying that he enjoyed the extra time we had together. We really didn’t have ‘extra’ time, but we did more things together as a family, like playing games and we formed a very strong bond.”

The really tough times were when Jay was starting his treatments. What do you say to your 10-year-old child when you are on the way to treatments and he is throwing up in a towel and he asks you, “Mommy, am I going to die?” Barbara says, “At one point when he was crying and yelling at the doctor not to do the LP I said, ‘I wish I was the one on the table.’ Jay looked right at me and yelled, ‘No you don’t’ but the nurse looked at him and said, ‘Yes she does.’

Heather’s story of finding Sarah’s cancer touched my heart so much and she tells it so beautifully I’m just going to use her words:

This whole journey started Sunday afternoon, August 9th, 2009. We had been out-of-town that weekend having fun with family and friends. Sunday afternoon I was trying to get the kitchen back in order, as it was a disaster. Sarah sat down at the table to have a popsicle and sweetly asked me if I wanted to have one with her. I told her I couldn’t because I had so much work I needed to do.

At that point, I felt very clearly that God said to me, “Have a popsicle with her!” I felt badly that my first response was to keep working rather than stop for some sweet time with my daughter, so I thought to myself, “Yes Sir!” and I promptly got a popsicle and joined her. I knew at that point that I wanted to just enjoy the moment with Sarah – so I pulled up a chair by her, rubbed her leg affectionately, and told her, “I will have a popsicle with you, sweet girl!” It was in that moment rubbing her leg that I rubbed right over the “lump.” I thought maybe it was just the way her heel was pushing on her leg – as she was sitting cross-legged, so I had her stand up so I could check it. I could still feel it when she was standing up. It was pretty big for something she had never felt and we had never seen. You know the rest of the story from there – but I know I needed to have that popsicle with her because God was directing me to find the tumor that day.

Sometimes all of us need to have a popsicle! The purpose of your “popsicle time” could simply be to stop and smell the roses for a few minutes, to make some new memories with those you love, to rest and stop working, or a time to talk and learn new things about your kids you never knew. This “popsicle moment” in my life was because God was directing me to something specific, and we are so grateful that He showed it to us before it had spread to anywhere else!

I share these stories with you because September is Childhood Cancer Awareness Month and cancer is still claiming too many little lives. More children die of cancer than any other disease – accidents are the only things that take more children’s lives than cancer. And yet the government and most large cancer organizations give less than 4% of their funding to childhood cancers. That’s craziness! Us mamas need to stick together in this fight, whether we have a child fighting cancer or not. Whether we know a child with cancer or not.

There are SOOOO many ways to join the fight against childhood cancer:

CURE

Rally

St. Baldrick’s

Alex’s Lemonade Stand

Camp Sunshine

Heather says that there are three things she tells moms when they find out their child has been diagnosed with cancer:

When I meet new moms going through this, I usually share things like this with them:

• You just became a “card carrying member” of a club you never wanted to be part of – but you will see that this community is amazing! We have met incredible people that we never would have met if we had not walked this road. The cancer moms I have met have become some of my closest friends. They understand what we are going through in ways that others cannot. They will be there to support you and hold you up through this!

• Let go whatever you can! A lot of new things will be added to your plate in this fight, so give up whatever you can, and don’t worry when other things (like housework, laundry, etc.) get behind! It will always be there and others can help you with some of that. Just take care of your kids, your family, and yourself!

• Don’t look too far ahead! God gives us strength one day at a time. In this situation when I imagine what the next three months might look like and how hard it might be, I am overwhelmed because I don’t have strength for the next three months right now. You have to take it one day at a time

And for those of us just trying to love someone going through this fight, she has advice for us too:

One thing I have experienced and have heard from many others in our situation or just in hard situations is that sometimes people who “try to help” or “try to comfort” actually end up hurting you. One example could be when they say “I know how you feel” and then compare it to something that you think doesn’t compare at all. It feels a little like insult to injury when you need comfort and support to instead feel hurt from the attempts. There are many more examples of the wrong things to say – but the bottom line is that anyone going through a hard time can be hurt more by our words. I am certain that I have said the wrong things, or neglected to do things I could/should have for others before I walked this road – simply because I didn’t know what would be the right thing to say or do.

You guys, my heart hurts every single day for these little warriors and their moms and dads and brothers and sisters who watch them suffer and feel like there is little they can do. In truth, there is so much we can do. We can love, we can pray, we can donate, and we can give of our time and talents, and we can raise awareness.