A few days after Father’s Day last year, Sally felt better and they let us take her outside for a walk, her first time outside in 10 days.

Hi all – Today is Father’s Day, I can’t tell you how happy it makes me to have all five of us home together, I am in a jovial mood today, Sally and I got out for a walk and Daddy/Sally coffee date yesterday. I’ve noticed more people giving her questioning looks, my first assumption being that she’s grown so her baldness doesn’t look normal anywhere. We’re totally fine with that, it means she’s getting bigger which is something chemo delays. Although some say it may just be that folks in our neighborhood recognize our little celebrity. Either way, it was great being out with her on Father’s Day Weekend. Last Father’s Day, having the five of us home together this year wasn’t guaranteed. The night prior was perhaps the scariest moment we had in those early days.

Nicole and I were awoken to the nurses in our room, who asked us to get up and wait outside. We watched in horror as a team of medical staff worked on Sally, who we were told was breathing irregularly and wasn’t getting enough oxygen. They performed an X-Ray and sucked out mucus that had built up. After 20 minutes we were allowed to come back into the room.

The next morning was Father’s Day, totally forgetting it until I walked out of the room and the nurses all wished me a Happy Father’s Day. I remember one of them saying, “Don’t worry, this will be the worst Father’s Day you’ll ever have, we’re going to get her better Dad.” So far, she has been right, and hope she will continue to be.

Parents are often put in challenging positions when their child is diagnosed with cancer or other life threatening conditions. One, most often (but not always) mothers, usually take over the “head nurse” duties and have to live and sleep the disease their child is battling. The other, mostly fathers like me have to put on a strong face and head to work to support the family and keep that health insurance going. It was very difficult for me those first few weeks of treatment to go back to work. My daughter was struggling and I couldn’t be there to help her, that role falling to Nicole. It was hard to let go, I often sent texts asking for updates, mostly to the annoyance of my wife who was busy focusing on doctors and chemo and Sally. Sorry honey 🙂

This divide and conquer can cause tension between Nicole and I as she lives and breaths Sally’s treatments, whereas I only experience it when I’m not at work. I’m not at the hospital so I hear news second hand and mostly only get hands on with her meds over the weekends. We try to counter this by being better with communication, Nicole telling me about their day at the hospital and me trying to prompt questions so that we’re on the same page. I keep charts of Sally’s blood tests, treatment and how she feels at work on my wall so that I have an idea of what’s going on and forces me to understand where we’re at. Being on the same page is something we constantly have to work on, and have nowhere near perfected yet.

Managing work stress with the constant stress of having a child battling a life threatening disease is difficult. I have days where I can focus and plow through work, and days where I stare at my computer and only think about Sally, wishing I could be with her while she goes through this. Sally used to say DaDa and MaMa before she got sick, but now only says MaMa, referring to both Nicole and I. Part of that is that she spends to much time with Nicole now, who is with her 24/7. I know she is in the best of hands with Nicole, who does a far better job being Head Nurse than I could ever do, but still brings sadness that she doesn’t say my name anymore. It’s something we work on with her, but it brings guilt that I’m not always there for her.

Both Nicole and I work hard to communicate how we’re feeling so that we can be strong for the boys and Sally. We’re in uncharted territory and there’s no road map for this. We do our best and make mistakes, but try to learn from them so that we continue to be on the same page.

Happy Father’s Day to all the dads out there, be sure to squeeze your kids extra tight today. For those who are less cub from this awful disease, please know that our thoughts are with you and think of you daily.

Please keep Sally in your thoughts and prayers. She began the new cycle on Thursday with a spinal tap of chemo and a bone marrow sample drawn. We were supposed to skip the oral chemo this cycle to give her body a break, but doctors changed their minds and have us giving her a smaller dose. Nicole and I are OK with this, we were nervous about cutting it out altogether. So far so good, Sally has just been very sleepy, we’ll see how her blood tests look tomorrow when we bring her into MSK.

For now, I have to go open my cards that the boys have been working hard on all morning and enjoy our family.

Gotta go eat this food portrait of me that Nicole just made for me.

Matt