Thursday, May 23, 2013

L'Chaim - To Life {Day 18}

In Judaism, 18 is a magical number. The two letters, Chet and Yud, correspond to the numbers 8 and 10 adding up to 18...chet and yud together spell "chai," which means "life." So in the history of Judaism, Hebrew and Gematria this number and this word always symbolize good things. So this is our 18th day on the HOT unit and it was filled with life, living, friends, family, love and good fortune.

Sammy woke in good spirits ready to attack the day. (Platelets never hurt to start a day. We also got blood today to help with his low hemoglobin count before he hit his angry phase) We got in sixteen laps before it was time for his morning lessons. His reading continues to improve everyday and I sit spellbound while he reads to his teacher in the mornings almost until there is no time for math. You would think this is on purpose, but we all happen to know that Sammy LOVES math too. He also loves playing educational iPad games with her, but the reading has truly taken center stage during his daily lessons.

Afterwards we shot right back out the gate and clicked off another 15 laps to post up another 30+ laps day, fourth in a row. Sammy has walked so much this week that his crocs rubbed a sore in one of his big toes and he spiked a small fever, but spiked nonetheless is spiked. He's now on broad spectrum antibiotics for his fever and an specific antibiotic for the sore on his big toe. At least this time I know where the sore came from and how it got there (unlike last month's random leg sore), but it is still scary to think that his body cannot defend itself from a simple walker's sore. We even discovered a small random mouth sore where Sammy must have bitten his tongue by accident (KEEP SWISHING!!!)

We fight the good fight every day. Microorganisms are opportunistic, but our doctors and nurses are swift and confidant and on the ball. We opened and put together the really cool Nerf hoop Chai Lifeline left for us yesterday. We had the most amazing fun having Sammy take shots from bed while I fetched the ball and commented in silly languages. I swear he almost snarked his water several times up his nose while drinking and laughing. I was worried I was going to cause the kid to either choke or puke on his bed. I simmered down a bit, told him not to laugh while drinking and timed my jokes for when his water straw was far away from his lips. But really, if I could have recorded the hilarity for you folks at home...or bottled the fun to sell... you could all experience the pure joy we had of just being silly and throwing the ball around the room and watching it bounce off the various corners, angles and objects the many times it just didn't make it through the net. Truthfully I thought chasing the ball down might get really annoying, but Sammy took such glee in the whole operation that all my annoyance was just to ham it up to make him laugh some more. Priceless.

By midday Sammy was a bit worn out from all the laughing, walking, jumping and playing. He decided he was a cat and pretended to take a cat nap for the ten to fifteen minutes before Bubbe and Zayde arrived.

Bubbe and Zayde arrived with two of the most important things all day. A bag of plums and a Filet-o-Fish sandwich with fries from McDonalds (I am AMAZED there isn't a small McDonalds in the lobby to save all the parents the trips back and forth to get some of the only food many sick kids will eat some days. I know they can't build it at the Ronald McDonald House, separation of For Profit/Non-Profit etc, but it would be pretty cool if they had a functioning McDonalds there that delivered!! Just say'n)

I went to the gym while Zayde and Sam got down to their math antics. When I returned they were deeply ensconced in a book Sam was reading to Zayde. Bubbe was ready to leave, but Zayde really wanted to find out what happened at the end of the book. Sam read on in order to make sure Zayde didn't leave without the mystery solved of what happened to all the animals in the end. Everyone likes some good literary resolution at the end of a fun book. 

You would think that this would all be enough for the day. It did slow down for a bit as we lazed into the late afternoon, drawing and reading, resting and talking. Sammy Facetimed for a few minutes with one of my oldest friend's son talking about Dragonvale and the hardships of breeding the perfect gem dragons. Both boys owned different types of tortoises and talked about their similarities and differences.

Then after a dinner of McDonald's chicken nuggets the evening activities really took off. Sammy's HOT unit buddy from last year, Jake, and his mom had flown in from San Francisco for one of Jake's clinic visits. They settled in at the Ronald McDonald House, got some picnic supplies and walked over to spend the evening with us. It all got crazy from that point. Once Jake had checked out all his old haunts on the floor he and his mom settled in to hang out with us. Big hugs all around like family returning after a long absence. It is here my photojournalist credentials fail. I was so involved in the conversation and in enjoying their company that I forgot to take a single picture.

The boys talked and played. They worked on Minecraft together on the iPad. Jake's mom and I caught up and even Nurse M came in and hung out to see her old friends and former patient, staying way past her shift just to spend time with us all before she really had to go. We spread the picnic repast on the small side table and the boys sort of grazed on cheese, crackers and fruit while the adults ate the grown up food. Nurse E, one of our favorites, checked in on us every now and then. Time flew. We blew past visiting hours without blinking. Before we knew it, it was bedtime and everyone had to go and get ready for bed.

Despite minor setbacks like the fever spikes and the antibiotics for the sore on his toe, this day was stellar. You couldn't ask for a day filled with more fun and blessings. It made the setbacks seem minor and trivial (which they never really are). Sam just seems to handle it all in stride. And I sit here and type in the darkness of bedtime (thank God for backlit keyboards!) wrapped in that wonderful feeling of having lived another day enveloped by the love and compassion of my family, my friends and my medical team that help make all this healing possible.
We are truly blessed and grateful every moment for all of it.
Thank you all for making this doable.
L'Chaim - To Life


  1. Thank you for sharing so much of your journey. You are all amazing, especially Sam!!

  2. What an amazing family. How I wish you all a good Shabbat.

    Adrienne Rosenblatt