And if that was God’s plan, God and I have bigger issues to discuss. And you cannot tell me that my 14 month old being hit with the worst type of life-threatening leukemia and having to undergo painful treatment and months of isolation was meant to be. Even if something good does come out of this, once again, it shouldn’t have been.

Often this comes in a religious context.

Something good with come out of all of it.”

Instead: Say it to your spouse or family.

Because I can’t hear how my tragedy caused you to appreciate your life more.

Even if you felt/feel this (as we often do when we hear about tragedy hitting a friend or family member), please don’t say it to me.

“Thank you for helping us see how lucky we are.”

Instead: say, “I am sending you strength.”Ģ.

And yes, you would be able to do this too.

These words were hard to hear because I did not want to be strong.

“You are the strongest person I know/ I would not be able to do what you are doing.” These were the lines that (while well-intentioned) were the hardest to hear.ġ. Now that I’m emerging, I’m able to share what I found least/most helpful. Many times in the last three years I was a person in crisis. None of which I could easily address, because my husband and kids were counting on me to hold the family together. In addition, my hair started falling out from the stress, and I was dealing with my own slew of medical problems, trauma and grief. During Andrew’s relapses as he appeared to be dying, I held him all day everyday, as I was the only person who could comfort him. I became Andrew’s 24 hours/day nurse, responsible for all of his medication/IVs and lines. Once Andrew was released from the hospital, we moved into a 3 rd floor two bedroom apartment so as to keep him safe from outside germs and stay close to the hospital. There was no time for sleep (let alone using the bathroom and showering). My days were filled with trying to comfort Andrew, entertain him when he was awake, hold him down as he was screaming during blood draws and meds, dealing with his nausea and vomiting, talking to doctors and nurses walking into the room 24/7, dealing with medical emergencies/decisions constantly, and talking to social workers/psychologists. I usually saw my husband a few minutes a day. I saw my older kids one hour a day at best. For over three months, I lived in a hospital room 6-7 nights per week. I lived in isolation or semi-isolation with Andrew for 11 months straight. From the Saturday morning when we went into the emergency room, I left my full time job, never to return to my office. While Andrew was undergoing chemotherapy and a bone marrow transplant, living in a hospital isolation room, here is what was happening with me.

But I write this in hopes that this will benefit at least one other person (and the people who love them) who has been, or will be, in crisis.īy crisis, here is what I mean. My disclaimer is that this is based on my own experiences, and what was helpful for me may not be helpful for someone else. This is my attempt at answering that question. Even today, nearly two years after Andrew’s passing, people ask me what was most helpful. But there were also things people said or did, however, that were (unbeknownst to them) somewhat hurtful. So much that people said or did was greatly helpful and gave us comfort at a time of immense pain and fear. We received meals, holiday gifts for my older kids (3 and 5 years old at the time), calls, texts, Facebook messages, and the list goes on.

Back in December 2014 when my 14 month old son Andrew was diagnosed with AMKL, an extremely rare, aggressive and deadly form of leukemia, so many people reached out and came to our aid to try to make the nightmare a little more manageable and a little more tolerable. Over this journey, there have been times I have felt supported by an army, and times I have felt completely alone.

It was my life for the first 11 months of my son’s cancer diagnosis, and then the last 4 months after his second cancer relapse, until his passing. Sounds like a horror movie, like a movie thriller. Absolute terror running through my veins. So sick to my stomach that the thought of food is sickening.

Hearts in motion