Monday, August 26, 2013

Milestones: BMT -1

I don't know when it started happening but we sometimes say "let's go home" when we mean "let's go to the Ronald McDonald House, our home-away-from home."


When we first came to Milwaukee, it did feel a little like a homecoming. I mostly know where things are. I know how to speak the language (bubbler, anyone?) and I'm always running into someone I knew from growing up.

When we decided to enroll the kids in school, I had no idea how many people we would know in their new setting. People from so many parts of my being at home.


But it's not home.
No matter how homey we make it.
No matter how many times we slip up.

But the old adage, "home is where the heart is," is so very true.
We are all together.
We are all in this together.
One room, two rooms, however much space we have....

Today two of the kids started school. Another one starts on Wednesday.
They know it is temporary. But it's still real.
Everything about this is bittersweet. What an incredible blessing for my family to be together in Wisconsin. We feel so welcomed and embraced by the Milwaukee Jewish Day School and Gan Ami Preschool communities and we are so very thankful to everyone who has made this possible for us. We miss our friends at Oak Terrace and Northwood and Lutz...but we know that we will return as soon as we are able.

But it is bittersweet. I'm a total sucker for the first day of school. I love the newness, the possibilities, the potential in a brand new year. I love the sharpened pencils and the shiny new folders. I love the ritual of beginning....(I just realized that I pretty much repeated the paragraph that I wrote last year when Sam began school.)

Last week, I watched on Facebook as my children's classmates in Highwood started school and I didn't feel sad, because I knew that my kids were still going to school. But today...I felt the heavy weight of the fact that instead of joining my children on the first day of school (that honor went to the Abba), I stayed with Sam while he had his PICC line in. A different kind of beginning, don't you think? Something new, something challenging, not quite a sharpened pencil....I am not quite sure how to answer when people ask about my kids -- yes, I have a second-grader. No, he's not enrolled in school quite yet...but these coming days and months will give him so many more years to have first-days-of-school, right?
Now he's all ready. Four lumens, prepared for tomorrow's Big Event.
Today was considered a "rest day." No more chemotherapy, but he did start a continuous cyclosporine drip. This is the main drug that will prevent rejection of the incoming bone marrow, and I am sure I will tell you more about it in the future. 
In the meantime, Sam hung out with Grandma today. He also got special permission to have her bring him some thin crust Lou Malnati's pizza, his favorite. Then he realized that his taste buds just aren't what they used to be...and that made him a little bit sad. But not too sad to eat four pieces. Woo hoo!

Sam and Grandma sharing their dragon games
Today was The Big Day for SuperMensch, Sam's donor. Today he finished up his course of filgrastim, to stimulate his blood production, and he underwent the procedure to extract his cells for Sam. I understand that he didn't have the marrow extraction (surgical), but instead had his peripheral blood stem cells removed. This is a lengthy process that requires him to sit very still with IVs in both arms. (Want to know what it might be like for SuperMensch? Here's a video.) This method of collection allows them to properly deplete the donated blood of its T-Cells in order to prepare them for Sam (remember, it's a T-Cell Depleted transplant, so you gotta deplete!) -- the processing is being done now and will be done by late afternoon or early evening tomorrow.

I am sure our SuperMensch is home by now, and resting. I hope someone brought him an awesome dinner and that someone else is tending to all of his needs. I hope that he posted something amazing on his Facebook page like "Today I saved a life" and I hope that everyone clicked "like" and wrote things like "LOVE THIS!" and that someone bought him presents and that people throw confetti at him when he goes back to work or school. I hope he takes tomorrow off and tells people that he deserves a vacation day because he GAVE LIFE TO MY KID.

Sam's transplant will actually take place sometime in the evening, when the cells are properly prepared. I know from most people around here that it can actually be very "boring" -- but how on earth can we be bored by this amazing event? Tomorrow is Day 0.

We are ready.


  1. I am so happy that you have arrived at this moment full of hope.

  2. Sam - You have my total support for whatever that is worth. My wife has leukemia and was due for a BMT this summer but it was delayed because she picked up a virus. She's doing great though on the chemo. I hope you are strong and powerful for the new year.

    PS - I'm a rabbi too.

  3. Good luck, good luck! Praying for you and thinking of you.

  4. On November 16th, I will be 8,030 days (give or take a day or two) post-BMT (autologous for Hodgkin's). Hang in there-it gets better ;))

  5. I spend much time during my day thinking about Superman Sam & holding healing thoughts & prayers for him. Today almost all my thoughts were for Mr Donor, SuperMensch as you so correctly call him. He has earned his place in whatever heaven he believes. I echo your thoughts that people in his life fete him: great food, confetti, extra vacation days.

    And glory to the researchers & doctors who brought you to this place. What number of miracles have occurred for this very special time in Superman Sam's life. LIFE!!!


  6. Time to rock this thing. Praying you all can rest well tonight.

  7. Dear SuperMench...I wish I could send you yummy cookies and milk. Thank you for saving a life.

    Dear Superman Sam, I wish you nothing but peace and health. You are my hero.

  8. Sounds like the start of an awesome film - SuperMensch and young Superman Sam - perhaps never to meet, but always to be connected ... an awesome film with a fantastically happy ending!

    Feeling the awe and hope of these important days ... and continuing to send all our best wishes and prayers --

    Stephanie, Aaron & Eli

  9. Wishing you such big luck and love from California. What an amazing family and how lucky to have such an amazing SuperMensch. Here's hoping this is what Superman Sam needs to be on the road to good health!

  10. Phyllis & Michael & Sam & family--I'm sending much love to you all from afar, and cheering you on. Wishing you a new year of much health, sweetness, and only good things.

  11. Home is where the family is.
    Refuah Shleimah

  12. So much good "jew-jew" going your way!!

  13. holding Sam and all of you in my heart, especially tomorrow

  14. Wishing SuperSam and SuperMensch all the best!

  15. Sending all my love and holding all of you very close in my heart on this most momentous day.

    Onward and upward!

  16. Sending prayers for refuah shleyma to Sam and wishing your whole family a happy and HEALTHY new year 5774.

  17. My prayers are with all of you. The timing of the transfer of cells, just before the New Year is beshert and a message. It is a new year and a new beginning of health for Sam. May 5774 bring your family much joy as you celebrate Sam's return to good health.

  18. I as well as my family members had Sam in mind in our prayers all day today. I said chapter 119 in Tehillim for the letters of his name.
    The new year should be filled with only joy and good health for all.