On January 3rd, 2006 Steve McNitt, a Licensed Clinical Social Worker at El Dorado County Mental Health, married to his wife Susie of twenty years, father of Noah McNitt (then 12) and Caleb McNitt (then 10), received some heartbreaking news about his son, Caleb.
Caleb was diagnosed with Acute Mylogenous Leukemia (AML), which is generally regarded as an adult form of leukemia. They were told to expect some “near death experiences”, and that the survival rate for children is about 50/50. From then the McNitt’s life radically changed, with trips to the hospital and doctors office as common as a trip to the grocery store. The first bout of AML had Caleb in the hospital for one hundred and sixty one nights, including eight weeks in ICU. He had four rounds of chemotherapy, multiple operations, and more blood transfusions than they cared to count. Given the aggressive nature of the cancer they were told if Caleb could stay cancer free for three years he would be out of the woods. Each year had diminishing medical needs and increasing hope. At the end of the three years they threw a huge party.
And he was cancer free… for twelve days.
Caleb relapsed. He needed more chemotherapy, full body radiation, and a bone marrow transplant. He had to be moved to Stanford University for the treatments and spent another one hundred days in treatment.
At the forefront of Steve’s life was ensuring that Caleb stay alive, but not just living…but LIVING.
The following is an excerpt of Steve describing this time:
It is impossible to have a “normal life” when you are in the hospital so many days. But we tried to do all we could. We had meals as a family as often as we could. And although it was sitting on hospital beds, eating fast food, hoping that we were not in the way of the nurses or the x-ray techs, it was a form of urban camping! I don’t recommend it, but we adapted to our environment and had adventures nearly every night.
And we tried to laugh! We had fun questions for the doctors and nurses to answer each day to earn some chocolate. We played games, we learned to use our surroundings for fun, we made balloons out of the exam gloves, we put up a Nerf basketball hoop on the bathroom door, we put up pictures of sunsets, and we prayed each night for healing, peace and other families on the floor.
And we knew that to keep our sanity we would have to make friends with the nurses. And the nurses were free entertainment in their humor and creativity in Caleb’s treatment. We asked about their lives to help forget about the mundane nature of ours. We looked at the pictures of their family and pets… and it helped us think about what was outside of those walls where normal families were living. And the nurses taught us secrets like where we could sneak onto other floors and take showers. I can tell you there is NOTHING more humiliating than being a man and sneaking onto the maternity ward to take a shower in one of the empty rooms!
Our lives grew into a “new normal”. Although exhausting, I got used to driving the fifty mile round trip after work to have dinner with the family. Noah got accustomed to getting scooped up and brought down to see what progress his brother made, and what new toys his brother might share. Susie’s “new normal” meant spending nights in a bed that was too small, woken up at midnight by the new nurse coming on shift, at 4:30am by the x-ray tech, and having her heart and imagination race when annoying alarms went off.
Although it was a short season, the intensity of it made it seem like slow motion, the way a car accident seems to happen over the course of minutes not milliseconds. It truly made us stronger, more thankful, and put perspective on our lives. When I thought about things going poorly for me, my new motto was: “If that is the worst thing that happens to me this week, that is still a pretty good week!”
I’m honored to know you Steve. Your devotion and loving spirit are like a cool breeze on our hot summer days in El Dorado County.
Tell us how you coped with the stress of having a child with a potentially terminal illness? What specific coping skills worked better than others?
It has been said that you can live fourteen days without food, seven days without water, but not a minute without hope! The only way we COULD have survived was to have a heaping dose of hope. We originally looked to our doctors for this, but they could only give us a 50/50 chance. There was a lot of doom and gloom from them. They would probably call it “reality”, but we did not need reality, we needed informed hope. We looked to our friends for hope, and they ALL told us it would be okay. Of course we did not listen to them, after all what do THEY know?
We had to turn back to where we had found hope before Caleb got sick, to God. We leaned into the promises of God to “never leave us” and that there was a hope of Heaven (if the unthinkable did happen). We found comfort in praying to a power MUCH greater than ourselves, and our doctors. We know that other sincere people pray and their loved ones don’t make it. I am not sure why Caleb survived and others did not, but I am glad he did. I am not sure if we nudged God into a place where he spared Caleb’s life, but I do know that we had peace beyond all understanding along the journey.
The other way we coped was through laughter. After all, laughter is good medicine. We got to know the nurses (this is KEY to any long-term hospital stay: make the nurses like you and WANT to give you attention). We did this through asking them questions, giving them candy, pulling pranks on them (like when I lured one in and Caleb shot her with Silly String), and helping them pull pranks on us. We told jokes, made fun of each other, drew targets on the windows and shot sticky things at them. We did the best we could through connections and laughter.
In the words of that great philosopher, Jimmy Buffet: “If we couldn’t laugh we would all go insane”.
I keep tearing up through this interview. I feel like my problems are very manageable! And, your perspective is A-MAZ-ING!
How did your relationship change within your family? All too often the stress of illness in the family can tear people apart. In your case, it seems to have had the opposite effect:
Early on Susie and I knew that no matter what happened to Caleb we would still be together, so we adopted a “no regrets” attitude. We agreed to not judge each other, to try and support one another, and to allow each other to grieve, rest, play or escape as needed. We had worked so hard to get Caleb through adoption that we had practice going through hard things.
With all the stress of the illness, the regular household, your other child, your own needs, and inexperience in dealing with something of this magnitude sheds light on how easily a couple could break up (and we watched a few as they separated, divorced, or blamed each other). However, we were committed to being committed.
I think it was hardest on our relationships with our other son, Noah. His needs were secondary, but we tried to keep some semblance of normalcy. We still did things with Noah, but it was never enough and it was disrupted by the needs of Caleb’s illness. We have good relationships now, but I think we will always wonder if Noah felt ignored (he says no).
It’s a tremendous balance, and when I see you with Susie, the love is SO evident…
You are involved with the local high school’s Young Life, and, from pictures I’ve seen, I don’t know who had more fun: you or the kids! How do you make time for all of your commitments?
A few years ago Caleb asked me if I would help lead the local Young Life group. I initially said no, I did not want to cramp his space. But later when we talked I thought, how often does your fifteen year old ask you to spend MORE time with him? I could not pass it up! I have had fun getting to invest in the lives of the young people in our area. So many of them are craving commitment, boundaries, and unconditional positivity. I try to give them that. I can tell you that having gone through all that we have as a family has focused our priorities and given us clarity on some things. We care more about each other and less about our cars, careers, and fixing our house (unfortunately that one shows). We make time for people, because they are what matter the most. And, if we were all honest, we would say that we do not know how long we have them in our lives, so let’s celebrate the people that we have and love!
How is Caleb’s health now? Do you think you’ll ever fully relax or does the threat of his cancer resurfacing hover in your mind?
Caleb is healthy for now. Last year he completed his first Sprint Distance Triathlon (swim, bike, run). This year he competed on his high school swim team. He is off of all of his medications, and only goes to see the oncology team every six months— Woot Woot! All that having been said, we are learning to live with the threat of cancer. Most of the chemotherapy drugs he was given can cause other forms of cancer (cool side effect, eh?) So, relapse is something we dread, but we know itis a possibility. It makes us live more in the present, which seems like a better way to live. I mean, there are parents today who will get a phone call that their child has been hit by a car… they are not prepared for that news, who could be? In our case we know that we are likely to outlive Caleb. We know it is a possibility, but we try to stay in denial as much as possible, otherwise we will drive ourselves crazy!
I don’t know if that’s denial, as much as courageous acceptance.
What would you tell families and couples going through a child’s illness…pearls of wisdom, red flags to look for, things to avoid, and such?
When you fly on an airplane they tell you to put your own oxygen mask on before you put on your children’s, that way you can both live. When you are going through something hard remember that to take care of yourself in order to be good for those around. Take every situation with humor, even if it is awkward. Find hope… keep looking until you find it, then grab hold of it.
Steve, thank you so much for your time. Truly, this is an example of Radical Compassion, Devotion, and Parenting. I’ve not only gotten to know you more completely, but you’ve shaken some things in me, and given me new perspective. Bless you and your family! You are a lovely human being, and I continue to wish Caleb a full, happy, and healthy life!