Monday, April 1, 2013

Here we go again

Everyone who sees us gives us a little sad smile.

Relapse SUCKS.
I think it might suck more than the initial diagnosis. I will have to consider which one has more suckitude. I will work on some higher-level vocabulary, too, okay?

There had been such joy, such exuberance, such hope for a future filled with normal counts.

Crashing down....and let me tell you, it landed the hardest on Sam. The kid is ticked off.

And yet...he was a super gem of a kid today.
He said please and thank you and he told me that maybe he could be the top of the lap-counting board this month. He hasn't exactly been happy to see anyone, but he hasn't been yelling either.
As I type this, he's remembered that Sponge Bob is usually on tv in the pre-bedtime hours.
He's drinking one of my famous hospital-hot-chocolate-concoctions. (It might contain a whole carton of whole milk.) The routines are the same. The hand-washing. The beeping IV pumps. The parent badge is slightly new and improved. Hey, it's the little things, right?

Today was a spinal tap, complete with a triple cocktail of intrathecal chemotherapy (that's drugs inserted directly into the spinal fluid to combat any stealthy leukemia that might be lurking in there). If you'll recall, Sam has had some trouble with the headache that often follows a spinal tap, so I repeated over and over our mantra to increase fluids and use a really small needle.

Along with the spinal tap, since they like to sandwich these things and put him under as few times as possible, was the insertion of his new central line, with its two lumens, or tubes. Totally tubular!!! (oy...laugh or cry, people, laugh or cry.)

His platelets were a little low, so they ordered a dose of those before they would do the procedures. Platelets help with blood clotting, so they're relatively useful when having surgery performed on you.
All of that led to a verrrrrrryyyyyyy long day spent waiting for the procedure, which finally got underway about 2:30pm, and went very well. So far so good on the headache.

The staff were so impressed with his fabulous head of hair, and how tall he has gotten in just the few short months since they saw him last.
nurse, pole, hospital bed...yep, we're back.
We're in an east-facing room. I like to think it's because we asked....
the view from here
So we're open for business. Full-body chemotherapy inserted through the brand-spanking-new central line begins tomorrow. There will be a new drug added into the ones Sam has had before. I'm sure that beautiful hair will be gone before we know it. Sigh. Hair grows back. (Speaking of hair, he was going to cut it anyway.)

Sam loved all the mail let's try this again:
Sam Sommer, E584
Children's Hospital of Wisconsin
P.O. Box 1997
Milwaukee, Wisconsin 53201-1997

It totally brought him so much light each time the mail delivery came, so thank you.
Michael and I both felt such love over the last few days -- to see the Superman pics on Facebook totally filled us up with the blessing of our community of family and friends far and wide. Thank you.

P.S. New chapter, new blog header....if you're reading in an email click over to check it out! #whatmamabloggersdo


  1. Words fail me. But I'm so moved and impressed to hear that Sam said please and thank you even under these circumstances (y'all are clearly raising him right!) and so glad that the spinal tap went as well as it could. Glad you got a room with a view. The little things.

    Holding y'all in prayer, with so much love.

  2. I'm so sorry to hear about the relapse. Your spirit is such an inspiration, and I am continually impressed by yours and Sam's positive attitudes. Sending thoughts and prayers to room E584 and the whole family.

    (Friend of Barrett's, and a supporter of Superman Sam :)

  3. While you look to the east, know that blessings and prayers are being sent your way from the west (coast) Sam (and you) have worked your way into my heart -- it's more than the "chicago" connection - it's the way you all have walked this road that is so inspiring and real. If Sam wants anything special from LA, let me know and I'll see what I can do!

  4. G-d willing this time will be the last and he'll have a long, long full life.

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  6. Sam truly is Superman but hopefully this adventure will soon have a happy ending. I wish I could do more than pray, send hugs and be a friend....

    Tj Feldman-Halpern

  7. Sam- I want to know if you are planning on naming your new pole?
    Huge hugs to you and your family from Miami Fl.
    Your Super fans are all gathered together again cheering you on!

  8. All things good, Superman Sam. I am thinking about you lots and sending lots of prayers and good thoughts from Florida.

  9. Bless those in need of healing with r'fuah sh'leimah,
    The renewal of body, the renewal of spirit,
    And let us say, Amen

    Sending our best from a URJ Camp Eisner Family on Long Island, NY. Rooting for Sam (again).

  10. Wishing Sam a Refuah shleima and may it be very quick too!
    We are sending tefillot from Ramat Beit Shemesh