Nurse K was back in action and we were both thrilled for her smiles and energy to fill our day. She helped with the first bath of the day and put the final count down on the board (3 more to go!). At bedtime tomorrow we will be back to a "normal" schedule of bathing for this boy!!
Around midday Tante Anne and Roger arrived to visit for the day. Sammy was overjoyed. He immediately asked for chicken mcnuggets so Roger and I took a quick drive. We left Tante and Sam playing dominoes as we left to make the food run.
When we returned Bubbe had joined us and was enjoying Sam's energy and wit. With all these baths, linen changes and wardrobe changes Bubbe has been working overtime to help us keep Sam in shirts, britches and undergarments. We couldn't have done it without her and Zayde supporting us from so close by.
Sammy devoured his nuggets and was on fire all day (except with the multi-vitamin. That gave him fits and caused the brief amount of vomiting just trying to ingest it. Oh well).
Sam played charades with Tante and Roger. He showed them how to use his bow and arrows. He was overjoyed at the soap stone dinosaur Roger had brought him. He asked a million questions and made Tante answer a million questions. The conversation and energy just never seemed to end. Until Sam was hungry again of course. "More NUGGETS please!!" Who could refuse such a kind request? In the car once more we returned with food for Sam, Roger and Tante this time.
Sam ate like a champion once he got his feet under him and his nausea was held at bay. We Facetimed with Ima to wish her a happy mother's day and said hi to Solly who was splashing around happily in his evening bath.
When it was time to go there was sadness (adult onset exhaustion) and hugs for everyone. The company made five hours feel like one. After everyone left Sam was hopped up on adrenaline and a great company high. He wanted to walk, to play, to go outside (it was 41 degrees out. I nixed that one). We went downstairs for a walk. Sam stopped to look at the fish tank in awe. He tried to find the eel, but was disappointed when he couldn't. He wanted to know how to startle the puffer fish. I told him it probably wasn't wise to ponder banging on the tank, let alone doing it.
We came back up. Sam still didn't want to go into the room. We took the mini-hockey sticks and played in the long corridor between the HOT unit and the elevators. It is a perfect hockey rink because it's long, narrow and the ball can't really get away from us (unless someone came out of the HOT unit and the ball got away from me. I'm not saying it happened, but I'm not denying it either.) The corridor was a compromise considering Sam wanted to play hockey in the downstairs lobby since no one was around and it was a huge open play space when empty. I successfully convinced him that the upstairs corridor was our best bet. My charm and persuasiveness won the day and Sam had a great time passing the ball back and forth, only stopping the few times people came into or out of the HOT unit.
In the room we got ready for bed and Sam wanted to watch the Adam Sandler film, Jack and Jill (90 minutes I will never get back in my life. I love Adam Sandler and am not sure I can ever forgive him. I may need to watch 50 First Dates or Just Go with It again just to rinse the horror out of my brain). Nurse E clocked in at 7 and watched over our shoulder for a few minutes when checking in on us.
After the movie we prepped for our last bath for the day and Sammy negotiated for some final iPad time. He padded his time by claiming to be hungry and devouring two more peaches. Who can argue with a hungry kid with cancer at 9pm? Certainly not me. He brushed his teeth once more, hopped into bed. We talked for a little. I sang the Shema and sent my beloved Sam off to dream land.
It was a long day. It was a great day. Sam was magnificent. Nurse K, Bubbe, Tante Anne and Roger were magnificent. It is a great day when you only have to look at the clock to remind you to ask Sam what he wants to eat, or that it is time for his next bath. It is a great day when time flows like a river rather than a tiny streamlet. When you can make a day in a single box feel like a day at the circus, zoo, museum, ball park, hockey rink, game show, disney and the movies, then you've succeeded in banishing tedium and remaining reigning champs in the fight against boredom and cabin fever. Sam fought us all day when we mentioned doing laps because he was having so much fun having a captive audience in front of him. I'm not sure he sat down for most of the day since he was standing and walking around the room either during charades or when chasing down all his arrows. When you can fill a single day with all these things and don't leave the room from lunch time until 620pm you accomplished something magical. While thoroughly exhausted I still felt blessed being witness to such magic between a boy and my friends. Wonder and curiosity are to be encouraged and fed to insure the defeat of walls that have no choice but to try and box you in.
Thank you to all the blessings in my life.