I’ve received word that my Dad’s bone marrow transplant has failed and I'm feeling confused, and guilty, because I'm much calmer than I expected I'd be. I'm feeling a little blank. I'm just sitting here. I don't know what's going on. In the hours since I received the news that my Dad’s transplant has failed I’ve found myself recalling flashes, bits and pieces, of moments where I was 'rude' to him and by that I mean the usual little fights kids have with their parent. I deeply regret every moment I was angry at him.

My Dad has a rare form of cancer called Myleofibrosis, which means he’s got no bone marrow.  Bone marrow is a necessity.  Without it, a person has virtually no chance of survival.  A few months ago my Dad had a bone marrow transplant and things looked to be going very well, but after a visit with the doctors at Dana Farber in Boston yesterday, my parents were told that Dad’s transplant has failed.  What does that mean?  It means that time is not on our side.  The doctors are looking into every possibility and hope to get approval from my parent’s insurance company to go ahead with a more intense treatment that would include trying another bone marrow transplant.

I know things are out of my control, but I’m human and I’m selfish.  I want my Dad.  I’m struggling with knowing that there’s a glimmer of hope with a successful bone marrow transplant and frustrated with knowing it’s not worked.  My whole being is filled with so much sadness.  My Dad says he’s at peace, but I think he’s just faking it so that we don't feel so bad. He's always been like that. He doesn't want to admit his weakness. He’s the father of 7 kids and a husband to his best friend.  We need him.   I don’t want to not be able to hear his voice, to hug him, to go to him for advice.  The little kids need him to teach them how to drive, to teach the boys how to become good men, to be there to watch them graduate and get married and have babies. My Mom needs her best friend. My heart just aches.  Sure, the four of us older kids (Jeff, Brian and Beth are all in their mid to late 20’s) can step in and help raise the little kids, but what about my Mom?  If something happens to my Dad, there will be a void within my Mom that none of us kids will be able to fill. How do you begin to console someone going through something like this?  How do you begin to explain to a child that they’re going to be ok when their world is crumbling down around them?

The little kids (Sarah is 12, Charlie just turned 11 and Sammy is 9) know that Dad is sick, but I don’t think they know how grave the situation is.  And this is something we’ve grappled with.  How much should they know?  Do we shield them or do we tell them straight up what’s going on? There are so many questions running through my head.  So I did what most people do in a situation like this.  I started searching for answers.

If you or someone you know is in the same situation as my family and you’re struggling with what to share or not share with the kids whose parent is seriously ill, here are a few pieces of advice I found from the Cancer Research Foundation:

Kids might ask very difficult questions, but instead of brushing them off, try to find a way to answer them.  This might mean that you have to think about difficult issues that might not otherwise be talked about.  Sometimes as adults, we brush things under the rug, but not kids.  Kids ask hard hitting questions such as:

  • When will Mom/ Dad die?
  • Will they ever come back?
  • Who will take care of me if Mom/Dad dies?
  • Am I going to die?
  • Can you take me with you?
  • Why is Mom/Dad dying?

These questions can be heartbreaking to hear. But try to stay calm and answer them on the kid’s level. Try to be honest, open and use words that kids can understand.

It can sometimes help to answer by asking children what they think will happen. Always be as honest as you can and don’t be afraid to say that you don’t have an answer to certain questions. Make sure you listen to what they have to say and reassure them often about how much you love them. Tell them that they will not be left alone.

Need more?  The American Cancer Society offers THIS fantastic webpage that goes more in depth with advice on how to talk to kids about what their parent is going through.

If you'd like to learn more about our family journey with Myleofibrosis, please feel free to visit our website HERE.