Julie still remembers the fear she felt when her son Kaden was diagnosed with leukemia. Now that he is in remission, she's sharing some of the wisdom she gained along the way. Here are her five tips for those weathering the journey of childhood cancer.
Have a bad day
Take each day, one day at a time. You'll have good ones and otherwise. And you’ll have too many sleepless nights to count. A good friend told me to "have the pity party, but when you go to bed, end the party – just like all other parties. Wake up the next day and start a new day."
Don't judge yourself
Your emotions will range wildly across the spectrum. There were times when we even felt "lucky," whether it was our diagnosis or cure rate, a smooth month of treatment, or access to a unique experience through the hospital or another generous charity.
Don't let yourself judge (or feel judged for) your feelings. I was given good advice early on: You can't control the feeling, only what you do with it.
Leverage child life
Child life specialists are some of the world's most special humans. Take care to find the person who can fulfill your family's needs. This will be one of the most important relationships for your children – all of them.
Child life specialists came to every camp, every school, every sport team my kids went to for the first two years of treatment. They are great and can make all of the kids comfortable with a quick 30-minute presentation.
Take extra intention with your other children. They are terrified and jealous (of the attention, missing school, gifts, etc.) all at the same time. This journey impacts their childhood – in many ways more than it affects the child with the diagnosis. I always say that one sibling gets the physical burden of cancer and the other bares the emotional burden of cancer.
My daughter couldn't understand why we didn't "worry about her when she was sick" like we did about her brother. In that moment, I realized how different her perspective was. She was worrying about every little thing not knowing why it couldn't be cancer.
Don't expect normal
Normal may never come. Your "new normal" that the staff talks about may never come. We never felt "normal" during treatment, and there are still days that are not normal. It's amazing how fast my mind goes to the worst with every bruise, every sniffle or headache and every early bedtime or nap. But in spite of that, life will still be really good – even great.
There is a special perspective on life you all will gain from this. Life is sweeter than before on the other side.
Learn more about the resources our Center for Cancer and Blood Disorders team provides for patients with cancer and their families.