Thursday, August 22, 2013

BMT Day -5

So Sam likes monsters. He likes big monsters, small monsters, flying monsters and creepy crawling monsters, so what would be a stay on the HOT unit be without a MONSTER med pole. Of course I'm not sure he was thinking Monster Trucks when they upgraded his med pole, but he is now the proud owner of one of the most well equipped Monster Med Poles ever.

While it was a raging storm of darkness and torrential rains outside, Sam and David played as if the rest of the world didn't exist. They played monopoly on the iPad (Sam is a horrific loser. He is still picking up on the fundamentals of the game and doesn't always listen when I tell him to manage his money closely). He did manage to beat me the first game out this morning and enjoyed that thoroughly. No I didn't take it easy on him. I take it easy on no child of mine. Beat me on your own merits or prepare to suffer defeat. He played well and the dice favored him this morning and me this afternoon. 

Throughout the day Sam and David also played Infinity Blade 2 and Plants vs. Zombies 2 together (OMG such an amazing game). David read stories to Sam and told some of his own stories too. They played cards and talked without a care in the world. It was a joy to behold and priceless when at nearly 7 pm Sam quipped after his third bath, "It feels as if this day was the shortest ever." 

Sam enjoyed receiving some lovely packages from more of our amazing friends. Books, and art supplies and an amazing Star Wars Origami book left Sam and David grinning from ear to ear. 

Just before dinner time came the whole family came to see Sam and reclaim David. Sam loved seeing everyone and was saddened when he bid them adieu. 

Sam rolls in his days as if this is all just a walk in the park. He's back on three baths a day, his nausea is stronger due to his six radiation treatments the first three days of this week. He's on plenty of anti-nausea and it almost does the trick. And yet his good moments are great and his bad moments are only blips on his radar screen. With David here I just sat back and watched them together while getting a little computer work done. 

David and the family are really the best medicine we can provide for Sam. The fact that at any given time the rest of the family are only just across the street at the Ronald McDonald House means that Sam's people are never more than a few minutes away. Being inundated with the hustle and bustle of all the siblings and having his favorite David in the world so close keeps a sense of normalcy at hands reach for Sam. No longer are we just a moment of FaceTime away, but rather we can be wholly together on a daily basis so that Sam is reminded of the greatness of those moments and of the noise and drama that can occur as well. Last year Sam would build up this utopia that was home and family in his mind. Some of his homecomings would be a bit of a let down because his siblings weren't perfect  and often threw their normal tantrum at bedtime. He had been away so long he had forgotten what bedtime was like. It was overwhelming for all of us. 

Now with us all just across the street he sees the love and drama on an almost daily basis so far. This allows him to appreciate the quiet when everyone leaves while allowing him to see that we are all right here with him for this experience, wherever it may lead us. 

After the last two weeks I don't need any excitement for a long time. I would appreciate it if every other nose in the family would stay intact. I expect people to rise and sit carefully and with grace for a long time coming. I suppose having a family is never a dull moment no matter what, and these last two weeks have certainly proven that. 

My infinite gratitude continues to go out to all the generosity and blessings that have been sent our way. You make all of this possible. We couldn't do it without you. Thank you to all those who are able to give time and body, allowing Phyllis and I to keep certain appointments and meetings that must be kept. Thank you of course to all the family and friends who are able to visit and to all the letters and emails sent filled with love and prayers to remind us of how many hearts we are held in. You give us strength in the moments when we need it the most. 


  1. Posts like this one fill me with gratitude -- for you, for Sam, for your family, for this window into your incredible struggle. I hadn't thought about what a difference it would make, having family so near by. I am so glad that y'all have that.

    I am holding Sam so tight in my prayers. Every day.

  2. We meshaberached him at the Board meeting tonight. I pray for Sam every day. Already healed, already healed.

  3. Starting wearing a hamsa 2 months ago for Sam. Everyday, throughout the day, I hold it and pray for Sam and the family. Holding you close in my heart, thoughts and prayers.
    WIth much love,

  4. Having the people you love nearby is excellent medicine indeed! Thank you for keeping us up to date, and know that you are in my prayers.