Jenni DeWitt is a Nebraska mother of two little boys, married to the love of her life. a cold day in February in 2012, her worst fear came true when her youngest child was diagnosed with Leukemia. He was admitted to Children’s Hospital and began his chemo therapy.
Jenni has just published a memoir, Forty Days: A Memoir of Our Time in the Desert of Childhood Cancer, an honest peek at the first forty days of her son’s illness, and everything that went along with it. She was kind enough to do an interview with Her View From Home.
How has your son’s diagnosis changed the way you view the world?
I used to be afraid of absolutely everything. I would try to plan and prepare. I use organic cleaning products and cloth diapers. Anything I could do to try to control the situation and keep my kids safe. Now I understand just how much I am not in control, and somehow there is freedom in that. The control is in the much more capable hands of God, and I am free to lean on Him.
Do you feel it has changed your entire family’s perspective on the world for the better?
Cooper’s illness has definitely changed our family’s perspective on the world. Now we know just what a blessing those everyday moments are. They are so easy to take for granted. However, when they are ripped from you for a while your eyes are opened. You understand what a blessing it is to be home together, to drop the kids off at school and pick them up – simple things like that take on a whole new light.
Did he seem to understand what was going on with him when he was diagnosed and while he was sick?
Cooper was only 2 years and 3 months old when he was first diagnosed. He could barely talk, and he was still in diapers. He didn’t understand what was going on. He just knew that it hurt and it was scary.
I can not even imagine what you have been through as a mom, but know sometimes we just go into things with faith and love guiding us. Is that what you feel got you through?
Sometimes the anticipation and fear of a hard event can torment us just as much as the event itself. Since Cooper’s diagnosis was so sudden, we did not have many moments of dread leading up to the initial bad news. We were thrown into the mix like someone who jumps from a sinking ship, and we really only had one choice – swim. We knew a lot of friends, family, and complete strangers were praying for us. On the really difficult days, God’s presence was almost palpable in the room, He felt so close. People often tell me, “I don’t know how you do it. I could never handle it.” The truth is, I couldn’t handle it either. It’s God who gets you through things like this, if you let Him help you.
Do you have any other children? If so, how did they feel during the first 40 days?
We have an older son, Anthony, who is three years older than Cooper. He was five-years-old and a preschooler when Cooper was diagnosed. We were absolutely amazed at how well he handled the situation. We were lucky enough to have two sets of grandparents who took turns taking care of Anthony, and he was thrilled with all the extra time with grandparents. He was too young to grasp the gravity of the situation, and that was a blessing.
Cooper and his favorite blanket, Greenie
I know when there are things happening to take us away from home, as a parent, we can feel pulled in multiple directions. How did you handle that? What did you do to keep some normalcy and routine in your lives?
There’s not a lot of normalcy or routine when you are in a medical crisis. You pretty much go into survival mode – doing what you need to in order to survive the day or the next moment. We live two hours from Children’s Hospital so there was no running home at night to throw in a load of laundry or sleep in our own bed. We basically moved into the hospital room. We had a bathroom, a mini fridge, and a washing machine down the hall. We learned how little you actually need to live.
Did you have to work at all while your son was in the hospital? What about your husband?
I worked at the local hospital, and my husband is a teacher. We were fortunate enough to be able to step away from our jobs in order to care for our son. Our employers were incredibly supportive and understanding. My husband was an assistant basketball coach, and he did slip away to coach at the district finals and state games on the days Cooper was feeling well enough that he could leave for a few hours.
Was it difficult on your marriage? What about after your son came home?
When you are under so much stress and have severe sleep deprivation, all of your character flaws have a way of bubbling to the surface. I can say with absolute certainty that I was not overly lovable many times. It made for some funny stories in my book Forty Days, but it was also a challenge and strain on our marriage at times. Still, the fact that my husband stuck by my side supporting and loving me, has served to strengthened our relationship in ways I can’t even explain. He is the only person in the world who has been through this experience with me every step of the way. We are like soldiers who fought side-by-side in the same war, and that has a way of building and strengthening a relationship. It’s been such a blessing to have each other to lean on.
How is your son now?
Cooper is doing well right now. He is actually still on treatment and is scheduled to conclude in June of 2015 as long as things keep going well. His treatment plan is one of the longest cancer treatments that there is at three and a half years. The first nine months were extremely intense. They would hit his body hard with chemo, wait for it to rebound a little bit, and then hit him hard again. His immune system was weak, and so he was not allowed to go out in public at all during that period of time. Once that was complete, he started on his current phase of treatment called Maintenance. He takes oral chemo every night at home. He also takes a few other medications to help his body deal with the side effects of the chemo. Every month we go to Children’s Hospital where Cooper receives IV chemotherapy, an IV antibiotic to help his body avoid pneumonia with his weakened immune system, and a blood product which also strengthens his body against infection. Every third month he also gets a spinal tap where they inject chemotherapy into his spinal fluid. Hearing this, you might picture him as appearing very weak and sick. Fortunately, that is not the case. If you met him on the street, you would never guess that Cooper is still undergoing cancer treatment. His hair has grown back, he goes to preschool, and he loves to pretend to be a ninja with his brother.
Justin, Anthony, Cooper, and Jenni DeWitt
How have the dynamics of your family changed?
Our family used to be one of those busy families. We were gone almost every weekend attending many activities and events. Since Cooper’s illness we have slowed down. At first it was by force, as we could not take Cooper out in public. But, during that time, we learned the value of slowing down and enjoying those simple moments together. Now, even though Cooper is able to re-enter society, we find ourselves staying home more. We make time to be together as a family. It’s been really great.
What is the release date of your book and where can we find it?
I have written a book about the intense first forty days after Cooper was diagnosed. It will be released on Cooper’s fifth birthday, November 12, 2014. You can purchase a digital or had copy of Forty Days on Amazon at this link: Forty Days and you can view other books I have written here: Jenni’s books on Amazon. A portion of all sales from Forty Days will be donated to childhood cancer research.
In Forty Days Jenni DeWitt tells the story of her family’s journey through the nightmare of childhood cancer. With raw honesty, quick wit, and humor she reminds us that even on the darkest days we can still see the light. For more enlightenment from Jenni, check out her inspirational blog and Cooper’s Caring Bridge.