Saturday, April 6, 2013

Dad & Dinosuar Eggs {chemo day 5}

After a nice, warm welcome and a little intake of a "Dinosaur Egg" (aka Donut Hole) from Tom's Pastry in Highwood, Sam has been resting most of the afternoon. I arrived at around noon today, took notes from Uncle Josh (my brother, Sam's uncle), and took my place next to a very-glad-to-see-me Sam.

He's exhausted, was nauseous and now is resting. He was so excited to receive some incredible candy apples, iTunes cards (his favorite), games, books and books on CD. He loved the dragon poster I made him and put up some of the early Alien art that Eric Winter had sent us in the fall. It is quiet. All we hear is the sound of the constant clicking from one of his devices administering his meds and the airflow in the room.

Passover's over, but I feel like we got left with one of the plagues. I've been writing this in my head all week as I try to stay between ok and completely numb. Questions in my head just keep tumbling over each other of why this plague returned when everything was going so well. Now, really, I know there are no answers. I tell my friends, to comfort them, that there are no answers and I know in all my soul that there are no good answers. We are dealing with microbiological warfare on a galactic scale that few if any of us can comprehend. 

We watch movies where swarms of aliens overwhelm the good guys and our brains can't really fathom the numbers of enemies we see on the screen. We just check it off as a lot. Well from month four to month five of remission, Sammy's nemesis went from zero to too many in no weeks at all, enough to put extreme pressure on his knees again, trying to go from inside to outside of his bone marrow. 

How does a seven-year-old tell you "Dad, the pain is the same as last time. Take me to the hospital now"? As parents, we don't want to be "Those Parents" running him into the hospital every time he gets a small bruise or a runny nose. So we wait and see if he improves from Tuesday to Wednesday to Thursday's "ok it's-serious-enough-moment, let's get x-rays again to make sure he didn't really break something," to Friday's regularly scheduled appointment where the doctors tell us everything we fear and nothing we want to hear. 

And our world falls in on itself. The walls seem closer. I am crushed as I watch him fight his inner beasts in a real world struggle once again. 

In his darkest moments, curled up next to me on our couch,  Sammy would squeeze my heart as he pleaded "I just want to go home." "You are home," I would answer. "No, I mean my real home." I have no answer for that. I have no answer for my 7-year-old who wants to go home before a time of illnesses and hospitals and cancer. A home where there is no pain, just joy, play, school, siblings, friends and our perception of normal. 

I receive so many Why and How questions. I continue to answer "Whose kid would you give this to if it wasn't my kid?" or I fall back on the 5-year-old girl, Jacyln Santos-Sacramento, who was run over and crushed to death this past summer and remind them that it can always be worse. My son is fighting the good fight surrounded by an incredible medical staff, friends and family. Two families and many communities will feel Jaclyn's loss for all times. There are really no whys and no one wants the gritty details of the hows. 

How about we are a most blessed family that has access to the #4 ranked Children's Hospital in the nation. We have one of, if not THE top bone marrow transplant specialists in the country (WORLD) who has become a personal friend as much as he's become Sammy's transplant doctor. How about the fact that we are blessed with a match within our family and not struggling against time to find a willing donor somewhere in the rest of the world (GET SWABBED! You could be the match that saves someone else's life).

When friends ask questions and I answer that "I am doing ok," or "I'm hanging in there," I mean it. I'm not just brushing them off. I also answer "Do I have a choice?" Because the answer is, "No, I don't have a choice." This won't go away. Sam needs me now, more than ever. This too shall pass. We all know what the bad outcomes are, but are most fortunate to have so many good options of positive outcomes possible to help us visualize our way through this. I'm not putting my head in the sand. I'm not running away to far away destinations where I don't have to shoulder my responsibilities (although Vegas does sound really nice right about now). 

So I am here reporting for active duty for my day one on Team Sam. This is life. Messy happens. We always hate it when it happens to someone we love, but guess what? It almost always happens to someone we love or to ourselves. I signed up for this when Sam drew his first breath, smiled his first smile and called me "DaDa" for the first time (ok, not all on the same day). No one said this would be easy. Some days, raising my own kids, I am amazed my parents didn't just sell me to science as I remember my own childhood behavior. So despite all the days I would sell my kids to science they somehow still wake up most days with a smile that reminds me why I keep them.  

Sam will get through this. We will all get through this. There will be some amazing days and some not so amazing days. We will pray that the amazing days always outnumber the not so amazing days. So remember that you all give me the strength to be as strong as I am for Sam. Your prayers, hugs, love, food, homes, children, spontaneous play dates, and evenings of laughter keep us sane and keep us focused. I couldn't do any of this without all of you. So understand how important your job is in helping me be able to do my job. Even struggling, I am the most blessed human I know.

With infinite love and gratitude, 


  1. Rocking that mohawk!!Love you guys...and sending hugs and prayers.

  2. Shalom, Michael. Prayers for Sammy and love to all.


  3. Praying for your whole family. I registered for the Be The Match program two years ago and hope some day that I can help someone.

  4. I've been registered with Be The Match since the late 1990's and made sure my contact info is current. I'm also donating blood tomorrow morning. Tonight my kids asked me why I'm going to get poked tomorrow when I could choose not to. I said that it IS a choice, and I choose this because people don't get to choose whether to need blood, and saving a life is one of the most important mitzvot we can do. I hope that when they get old enough, they will choose to donate, too.

  5. Hang in there and let the love of and support of all of us, in the myriad of ways we can give it, wash over you like a blanket. Love you all.
    Auntie Liz

  6. Oh, Michael, I am thinking of y'all and holding y'all in prayer. My (smalltown, western Massachusetts, Reform) community included Sammy on our mi sheberach list again yesterday. And we got into a conversation about Nadab and Abihu where I found myself saying: maybe this piece of this parsha is about our continuing struggle to make sense of the incomprehensible. We want to say it's because they broke the rules, and that if we all follow the rules we'll be safe, but we know that tragedy happens, sickness happens, and they could happen to any of us. All we can do is love one another, and care for one another -- when there is health, and when there is sickness; when we are broken, and when we are whole.

    And Sammy, that photo looks awesome. I *love* the new hairdo. Go you.

  7. Prayer and so much love for Sam and your family, Michael.

  8. My heart goes out to you and I pray for your dear Sam and Phyllis and you and your family every morning and evening. Thank you for being in my life and for being my Rabbi. I've only known you for this short time and I know in my heart of hearts that you have the strength and courage to get yourself and your family through this. And that God will be at your side every inch of the way.

  9. Refuah Shleimah
    Your post is included in Shiloh Musings: HH #403 The Cyber-Threat Edition.  Please visit, check out the other blogs, comment, share and join the community of jbloggers if you haven't already.

  10. Dear Sam,
    Great haircut! Sending you and your family hugs and prayers from NYC.
    ~ Jane.