Saturday, March 30, 2013

The Post You Didn't Want To Read

Alternative titles:
Hello, Cancer, My Old Friend Enemy
Welcome back to Cancerland
Relapse: Cancerland, Chapter 2
This Sucks Sucks Sucks

Michael and I spent quite a bit of time coming up with titles for this post that we didn't want to ever have to write.

We are absolutely heartbroken to report that Sam's leukemia has returned.

Remember that "false alarm" from a month ago?
On Tuesday night, during the second Seder, Sam told us he was in the same kind of pain.
Considering that they had visited Pump It Up that day, we were relatively unconcerned...

Until the pain kept him up all night. And by him, of course, I mean him and his parents.

For three nights. An x-ray on Thursday morning at Highland Park Hospital revealed no fractures (whew) so we waited until our scheduled checkup on Friday to go up to Children's.

By 5:30am on Friday morning, we were toast. So Sam and I packed it up and left for our appointment quite a bit early. They were incredible, and took us into the clinic way before our scheduled time.

Frankly, I took one look at our doctor's face as he came in to tell me about the blood test results and I knew what the answer was.

"There are some cells on the smear that we don't like. We'd like to do a bone marrow biopsy to be sure, but we believe that the leukemia has relapsed."

Relapse sounds a lot like collapse, which is pretty much what I felt like doing.

So we waited around all day for the biopsy...I will spare you the saga of keeping Sam from drinking and eating for the whole day.

The biopsy results were exactly as we'd feared.
Leukemia, relapse.

There's something interesting about this relapse business. It's not quite the same as when we came in the first time. That time, we were totally scared, overwhelmed and felt, as a friend said, like we'd fallen down Alice's rabbit hole. This time, the rabbit hole is more familiar and it's populated with people we have come to know, love, and, most importantly, trust.

Our people came out of the woodwork. Nurses and nurse practitioners and doctors came to see us as we waited. We felt cared for and protected. I think that last time I felt like it was "us" against "them." Now I know, with the utmost of certainty, that we are all on the same team.

The team is already in place.
The learning curve will, for the beginning at least, be gentle.
The HOT unit is still there, we're hoping for an east-facing room.
(See? We know what rooms are the "good" ones.)
As I said to Sam, we know how to make hot chocolate, we know the code to the secret elevators, we know how to work the televisions. What more do we need?

Sam is, understandably, incredibly upset. I have no words for the task of explaining to my 7-year-old that the cancer is back. So I chickened out and made the doctor do it.


Some details, a plan, a treatment....

They sent us home for the weekend. Hospital weekends, especially holiday weekends, are pretty awful.   (They said a few days won't kill him. Terrible cancer humor, but laughing is what keeps us going.)

So we headed home, to return to CHW on Monday.

To insert a new central line.
To start chemo.

Our new challenge: the treatment for the relapse of AML is, ultimately, bone marrow transplant. We don't know exactly how or what that will be like for our family, but I am quite blessed to know that we have some perfect matches within our own family. This does not mean that YOU should not be on the bone marrow registry. Do it in Sam's honor - don't wait. I canNOT imagine being told that your child needs a bone marrow transplant and NOT having the luxury, as we do, to have family donors. More on this later as we learn more from our doctors. It is new for us and frankly, very scary. But we have the BEST doctors in the country on the case. Seriously. People come from all over the country for a bone marrow transplant in Milwaukee.

This is the beginning of the second chapter of our Cancerland journey.
Thank you for being there with us.

76 comments:

  1. Sending only love your way. And please give Sam a big hug from me. XOXO

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  2. Oh, I am so sorry. I am so, so sorry.

    I'm glad you have people in your corner; I'm glad you have people you trust; I am pulling for y'all and praying for y'all and thinking of y'all with all of my heart.

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  3. My initial reaction involved words that are not publishable, so instead I will just send you all so much love and prayers.

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  4. Thinking of all of you! Sending love, prayers, hugs, and strength!

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  5. Oh, Phyllis. I saw the title of this post on my FB feed and tears came to my eyes. I'm so sorry you are all going through this again and I am thinking of all of you.

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  6. Words just fail to express how sad and scared and angry we are. We will continue to pray for you, love you unconditionally, and will be there to feed, house, drive, babysit, amuse, or sit quietly with you. Sam is what awesome looks like. Sam will beat this. (I know you don't need my saggy old marrow, but I've been on the registry for a few years) We love you all and will get Sam his very own Tandoor Lamb next time we go to Curry Hut.

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  7. Oh Phyllis. I'm so sorry about this TEMPORARY setback. Sending you huge hugs and prayers.

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  8. Right there with Jrotem, although I can add the part, "This sucks." We are praying for you and let us know what else we can do. Darn it.

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  9. Oh Phyllis, my heart skipped a beat when I saw this in my Facebook feed. Sending lots of hugs, thoughts, and prayers to all of you.

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  10. Learned about your blog from @TheAngelForever. So sorry to hear you have another battle with cancer coming up. Sending lots of positive thoughts for Sam and all of your family.

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  11. Becky just told me, and it breaks my heart for all of you. Know that you are in my heart and in my prayers. <3

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  12. Hi, friend of Amy, here, and fellow survivor. I'm so sorry it came back. Please tell Sam we are thinking great thoughts for him in MN!!

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  13. I do not know you and yours but I send love and prayers and strength. May G-d keep you all strong.

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  14. Sending strength and hugs. Will be praying for little Shmuel Asher ben HaRav Pesach Esther. May he find complete healing soon.

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  15. I said a really bad word...out loud...when I read this! I'm sad to hear this news. I wish I had more to give you than prayers, love and healing vibes. I'm sending them all your way.

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  16. Thinking of you all and sending Sam blessings for a Refuah shleimah

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  17. May you all of you find the strength to face this again and may we again know the joy and relief of Sam being healed and cured.

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  18. Dear Superman Sam, I think you're pretty awesome. You are super-brave, and super-loved by a whole lot of people. Like a WHOLE lot. I live in Detroit and your friends told me how special you are and how much they love you. I'm so sorry your leukemia came back. But you know what? It was gone for a while. And you were stronger than cancer. You still are. That's why we don't call it super-cancer; but we call you Superman Sam!

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  19. Sending virtual hugs and lots of love. Know that thousands of people, whom you know and those you don't know, are praying and pulling for Super Sam.

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    1. Saw this on Facebook, on one of our local Rabbis post and was drawn to read it which generally I do not do. Seeing your post made it even more personal. My thoughts and prayers go out to this family. And I will be tested as a bone marrow donor. (Love to Marianne)

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  20. I'm so, so soooo sooorrrry to hear this. Refuah shleimah and may G-d give all of you strength and health and good humor to cope. Sam's name hasn't left my T'hillim list.

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  21. My family sends all of our positive energy to Sam and your family.

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  22. Sending so so much love and prayers.

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  23. I'm sorry to hear this. Wishing your family strength and healing. I will keep you all in my thoughts.

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  24. I have no words...just know that your prayer network is back up and running (although I doubt it was ever down). I'm so sorry that you all have to go thru this heartbreaking setback. Your Oak Terrace family is behind you all the way!

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  25. How awful. Sad sad sad. Looking forward to seeing Sam ring the bell AGAIN!

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  26. UGH!! I am so sorry to hear this. I know Sam will kick cancer's butt again.

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  27. Thinking of you all and wishing you strength and love.

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  28. Sad to read this news...sending xoxo from NYC to all of you!

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  29. What happens if you turn into toast during Pesach?

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  30. BAD word. BAD word. BAD word. BAD word.

    And hugs and love and anything else you need.

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  32. I know your story through the many, many people who have shared your tale (including lots and lots of friends at URJ Camp Kalsman).
    1) This totally sucks and I am so sorry.
    2) You are going to get a match and get your blood cells all changed up like transformers and fighting soon, I can feel it! You are going to WIN this because you are Superman Sam.
    3) I was thinking of YOU Superman Sam (and your whole family) when I got swabbed in February for the registry during the URJ Youth Engagement Conference. There were LOTS of people at that table shoving those giant q-tips in their mouths and promising to help. I hope one of them is YOUR match, cause you are going to beat this.
    Sending lots of prayers and love to you and your family.
    Dorothy Kahn
    Youth Director at Temple Beth Am

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  33. Dear Superman Sam, you are indeed, amazing. My fondest well-wishes for a refuah shlema. Audrey Pessin Jung.

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  34. Sending lots and lots of positive thoughts and strength to all from the East Coast

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  35. I am so sorry to hear the news.....you are in my prayers....let me know if you will be in Wisconsin again

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  36. Oh yuck. Heart breaks. So many unrepeatable thoughts. So I just send my love and prayers.

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  37. A refuah shleimah to Superman Sam and strength to you all.

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  38. My heart is heavy, and with yours.

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  39. I'm so sad to read this post... Please know that I'm thinking of you and your family. Stay strong and hope, hope, hope! Sending you hugs and wishes for a r'fuah sh'leimah.

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  40. Sending love and healing wishes from our Nashville Temple community to your whole family. We believe in you, Superman Sam!

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  41. Sending prayers for a complete and speedy recovery.

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  42. Thoughts, prayers, and hugs.

    *Already Healed*

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  43. Sending lots of love and prayers! We pray every week for Sam at Sinai Reform Temple and now, we'll just have to pray even harder! Big hugs!!!

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  44. My prayers for Sam's complete and speedy healing are with you! I know it's not any consolation, but I know how much you're helping others by sharing your experience, strength, and hope!

    Sam IS super. He's a hero, and so are his parents,...even though they might not feel like it right now.

    May HaShem bring Sam and you out of your personal Mitzraim!

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  45. Love you all. Sending hugs and healing from London and glad we for to chat the other night. xoxoxoxox
    Auntie Liz

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  47. I had enjoyed peeking back at this page every now and then just to see that nothing was going on. I am sure none of Sam's fans were expecting to be here again. This time we need to crank up the prayers even higher. We are all on board again and I know I am speaking for everyone that loves you and Sam. We will get through this. Already healed!

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  48. Sending healing prayers and love your way!

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  49. Dear Superman Sam,
    You are a Super Guy with a Super Mom and Super Dad and a Super Family. I am sending you a super-sized serving of prayers, love and hugs. You are special to so many of us and we know you will be well soon.
    Rabbi Leah


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  50. never ever ever wanted to read this post
    sending hugs and love and prayers

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  51. Sending nothing but healthy and healing prayers your way..and how blessed he is to be surrounded by so much love and support. I was an anonymous donor to an 8 year old, nearly 20 years ago, and it remains one of the most profound experiences in my life. Love to you all.....

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  52. I've never met you, but I cried real tears for your family this morning. With our daughter in the midst of treatment for ALL, I can't even imagine how devastating this must be. But how wonderful that you have a good team in place, and that you know you're in the best hands as you begin this part of your journey. I will be keeping your family in my thoughts, reading your updates, and sending love and strength across the miles.

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    1. As will the rest of our family...

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    2. Jane- Love and prayers sent for your daughter.

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  53. Praying for Sam and the rest of your beautiful family.

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  54. All my love and prayers to Sam and your family. God bless and keep you healthy and safe.

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  55. Sending love and prayers to Super Sam and his whole family!

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  56. So sorry to read this post that you didn't ever want to write. Adding Sam back to my misheberach list and holding all of you in my heart as you travel the BMT path.

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  57. I know Sam will fight through this and I am praying for a quick and full refuah shelema. Be strong. You have so many people rooting for you. It's just a little kryptonite. Superman always win!
    Cecelia Ellis

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  58. I am so sorry to hear this disheartening news. I will keep Sam on our mish'berach list and all of you in my heart.

    Scott Sperling

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  59. Sammy, you have never left my prayers and I will continue to pray for you. A Superman like you will be well again soon. Love to you and your strong beautiful family.

    Franny Bananny.

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  60. Phyllis and Michael,

    I am saddened to see this disheartening news. I am glad to read that your surrounded by an amazing team to see you through this set back. Wishing Sam a speedy road to recovery. You are all in my thoughts.

    Laural Gordon

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  61. Phyllis and family,
    I am so sorry to hear about Sam's relapse and we are sending our love and prayers to you!
    The Sondells

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  62. Sending love and strength your way!!!!!!!!! from a friend in binghamton, sophie

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  63. Please, please, please know that you are in my prayers! I am in utter shock right now! Love, Robyn Strauss

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  64. This stinks. Thinking about you.

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  65. Phyllis and Michael,

    We're so sorry to hear your news ... We're sending you our love and support!

    The Coskeys

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  66. Just as in the Superman comics, sometimes villains are wily and elusive - and seem to get the best of Superman. BUT we know that he is stronger, smarter and ultimately triumphant! Cancer will be no match for Sam....but in the meantime you have many, many fans out there cheering you on. (And booing the villains cancer......) I remain, an Omaha fan!

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  67. I don't know why I decided to check in today, after a long time away. I am so sorry to hear about Sam's relapse and am praying for a complete recovery and much strength to all of you. You guys are amazing parents and an inspiration to so many. Best wishes.

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  68. Hi, Sammy! I'm Toni, remember, we talked in the temple and I told you I'm your friend and you said "Hi, Toni". I'll be so happy to meet you in the temple pretty soon!
    Toni Stavrakova

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  69. Refuah Shleima. I was devastated to read the news. Hashem should give Sam have a complete recovery soon, and all of you the strength to get through this. Thank you for posting Sam's complete hebrew name. I will keep him in mind in my prayers.

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  70. Oh Phyllis my heart sank upon reading this. It's reassuring that you have an excellent team. Refuah shlemah. Shabbat shalom, Hannah

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