Thursday, July 26, 2012

After Two weeks Off...Back to the Grind

It felt good to let go of the writing for two weeks and focus on watching Sam thrive at home as a healthy, slightly grumpy at times, 6 year old curmudgeon. While I was a bit on eggshells regarding keeping him healthy he was like a bull in a china shop wanting to touch everything and do everything. Sam was amazing. Phyllis made sure the doctor spoke in front of me saying all the things Sam could do.I of course asked, "So you mean I don't have to put him in a bubble, wrapped in a box and lock him in his room?" "No, you can let him play, see his friends and even go to a movie as long as it is an early show and not a sold out show."
  I held my breath and did as the doctor proscribed. It was fine. Sam had a great time. We enjoyed seeing him running around with his brothers, sister and friends. We stayed firm when he begged "Can I please wrestle and play bucking bronco with Uncle Josh?" "Um, no. I'd rather you not be thrown from your horse or unplugged violently in a reckless Greco-Roman moment. Please refrain from wrestling and horseback riding your uncle."
"I never get to do anything." Yes Sam, we are awful and strict parents who let you wear pajamas all day and black socks with your crocks out of the house (I've got no picture of this but picture shorts, a t-shirt, black socks with neon green crocks. He's like an elderly, retired six year old "We've got to hurry or we'll miss the early bird special! Get off my lawn you rascally kids!").

   Sam loved playing on the iPad with his brothers.
David and Sam built one of Sam's incredible Lego gifts together in the basement. Sam discovered that he actually likes the puzzle quality of building Lego sets.
One day an incredible gift arrived all the way from a friend living in Japan!
Not to be outdone by the Vice President, President Barack Obama and his family sent a very nice letter and signed picture wishing Sam strength and a speedy recovery.

Not to be outdone by the President of the United States, Stephen Colbert sent an incredible gift package with a hand signed tote, a hat, a t-shirt, a red "Wrist Strong" Bracelet and a really cool puzzle. I'm not sure when Stephen and the President started their war of one-upmanship, but Sam didn't seem to mind the healthy competition between friends as long as he benefited.

And then our friends at ThinkGeek got into the act. Somehow they heard about Sam. On Sam's bone marrow biopsy day he received an incredible gift box of ThinkGeek gear from a friend. A few days after that, ThinkGeek mentioned Sam on Twitter to their 200,000+ followers and included a link to our blog. For a few weeks now I've quipped, "Is it healthy for a blog about healing to go viral?" Needless to say Sam loves his Superman socks with their red capes.


Before Sam went back to the hospital yesterday we had a rip roaring game of hide the baby in the couch.
And yesterday morning Sam headed north once more to vanquish his biological foe. He overshot the hospital by an hour in order to visit his brother David at Olin Sang Ruby Union Institute one last time before starting his second month-long journey through treatment.


I loaded his iPad up with bug games, Teenage Mutant Ninja Turtle comic books and movies, and anything turtle, frog or dinosaur related I could find. Sam fell in love with a gift of Hex bugs at the tail end of his last round of chemo so I also sent along a surprise Hex Bug Habitat he had wanted.

Last night was really strange as I took in the quiet of the house on my way upstairs to bed. I had no one to talk to as I lay down for the night. Each room only held one small sleeping child. If there ever was such a thing, there was too much quiet. I lay down knowing that more than likely only one very small child would wake me up before the dawn (which he did with relish (and mustard) at 4am - OMG!). In the morning Sammy's ear to ear smile was missing. His "Wake up Daddy!" could only arrive via FaceTime. Strange what a difference two weeks makes.

The night before Sammy went north he was grumpy and angry. Once he arrived in Milwaukee and saw his new room he seemed much more upbeat and positive about the coming month. He FaceTimed me with glee four or five times throughout the day just to check in on me, and make sure I was doing OK at work. I hope his time home gave him the strength he needed to see there would be light at the end of every month where he gets to go home and sleep in his own bed surrounded by his family. I hope his spirit continues to soar despite his current Milwaukee mailing address.

Our undying gratitude continues to flow out to all of you our family, friends, congregations, supporters and new friends who we haven't even met yet. Your letters and gifts astound us. Your desire to be part of this healing process and part of the strength that holds us up is humbling. We don't have enough words. My hope is we can pay it forward a hundredfold when all is said and done. Whether by creating our own foundation or by supporting one of the many incredible foundations working to make Sammy one of the last children to battle this disease. May all our prayers be answered towards Sammy already healed and may that healing spread to all the others in need of health, strength and support. I extend my infinite love and gratitude to you all.

5 comments:

  1. Hmmm....Hide the baby in the couch may become a new game in my household. And those socks may have to fit into my wardrobe some how.
    Sam....we will all try to keep you company for your short stay at the hospital. They got rid of the nasty stuff already, and now we got to make certain it stays away. Be strong! How could you not be strong with that cool outfit from Japan.

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  2. OMG, those socks are fantabulous. Much love to you all. #alreadyhealed

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  3. I think the grumpy and angry is a good sign, of spark and spunk - though I can appreicate those are tough times to parent through. Obama, Colbert - and what have you heard from Romney? Nu, he hasn't chimed in? Sending wishes for healing and fortitude from the Miller family.

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  4. The socks and pics make me laugh. Your beautiful words make me furklempt. We will be there to offer prayers of healing and send love to all of you.

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  5. Hide the baby in the couch sounds like a great game! I'll have to play it, but maybe not until he can hold his own head up. (Also, I would be way more excited about the Colbert swag than the note from the President!)

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