Magic {day 19}

While I wish the title of this post meant that magically we had been whisked away from the hospital...it doesn't. 

It does mean that Auntie Liz came to visit and brought Sam a magician's hat!

They spent quite a bit of time figuring out the tricks that she got for him at the Very Big Toy Store in New York. It was so great to see her and give her a big hug. 

This update will be short before Shabbat. Sam is taking a little afternoon nap, which is a nice prelude to a day of rest!

Already things have been busy today with some school FaceTime:

And there was also big excitement in the mail -- a SpongeBob drawing from dad's friend Jay, who is one of the animators:

We are expecting a fun and quiet weekend with our friends visiting from California (mom is just as excited to see them as Sam is!) and wishing you all a Shabbat Shalom!

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

Laps & Laughs {Day 17}

While cloudy and rainy outside, it was sunshine and laughter inside all day. Sam woke in a great mood ready to hit the ground running. His energy never ceases to amaze me. His spirit and drive urge me on and keep me thinking one step ahead of him. After morning instructions and acquiring some no-slip socks (a small blister from yesterday's laps put the crocs on the sideline) we whipped through thirty laps. Two-thirds of the triplets saw us walking and joined us on our quest while their third rested and worked on his own healing in his room. They added some extra conversation and laughter to our laps. Laps finished, we adjourned to the central table to color and draw. 

Sam loved seeing Bubbe and Zayde walk through the door. Left alone to their own devices they immediately got down to their old mathematical antics. They loved playing the new dice game while I waited for another friend downstairs who was coming up for a visit.

After everyone left, close to dinner, Rabbi and his wife from Chai Lifeline dropped in with gifts for the whole family and Chinese food. We had such a nice visit. Our family has appreciated their support from the first months last summer when Sam was admitted to the hospital. Sam tried the Chinese food (impressive), but of course requested a Filet-O-Fish sandwich pronto. Whatever gets him to eat is worth the extra effort. 

The days seem just to blur into each other. Sam has no immune system, but that doesn't seem to slow him down at all. In CancerLand this is all so normal. He's in a safe place where the medicines and chemicals work to cure him and keep him alive. Eating is an olympic event and walking a mile is like running a marathon. And yet it all flows so casually. One minute into the next, morning into afternoon, afternoon into evening. Our favorite nurses in and our favorite nurses out. Math, geography, languages, dragons, SpongeBob, Full House, Fairly Odd Parents, the topics and entertainments keep us sharp and company throughout our day. 

Everyone talks about Sam's courage and spirit. None of this would be possible without it. His light keeps us charged and upbeat in the face of the daily medical grind. He has to drive the course because he is living this. He and I both know it could be worse. Every now and then I hear a story of someone having a much worse day than Sam and wish them healing and health as I give thanks for all my blessings and those showered upon Sam. In his humor and light demeanor Sam is a clear example of the good in all this and his ability to handle whatever is thrown at him. May it always be so. May our laughter always make our days seem like minutes and may all prayers comfort everyone sleeping here each night. Thank you all for your neverending love and support. 

Day of Healing {Day 16}

I would start with "I swept in during the dark of night..." but really, yesterday I strolled in much earlier than expected around 6:45 pm to Sam and a table of kids doing puzzles and asking questions when they needed help. As already stated, bath time was fun and uneventful, even if I wish I never had to draw another bath. Yet I know there are so many more baths that will need to be drawn. I look forward to the baths, months from now, without a central line or aquaguards, or even a hospital room. If I can't dream of times to come then I might as well not dream at all...

Sam slept well through the night while allergies woke me in the middle. Thank goodness for allergy meds. Sam woke for a moment in the morning and then crawled back into bed where he rested quietly until almost time for class. While he slept I ordered him a banana for breakfast.

We both got out of bed ten minutes before his tutor arrived. He ate his breakfast and then he and his tutor tucked into reading and math. Sam read to her beautifully. His reading skills continue to get better and better. I was quite impressed.

After rounds we lit out onto the floor and proceeded to do laps. Sam was up for the challenge so we walked 31 laps before 11 am, almost 1.3 miles straight out the gate. Most of the time I tested Sam's mental math skills since he had to figure out all the answers in his mind. We worked on addition with three numbers, multiplication, and division. We talked percentages and fractions a bit and I taught him how to figure out the square root of a few numbers and what it meant to square a number. When I ran out of math questions I started in on Harry Potter trivia. I tested Sam's knowledge of the characters, their animals and best friends. Sam impressed me with his ability to remember most of what he knows about Harry Potter. We had a fun time chatting away the laps and keeping our minds keen.

Afterwards, we returned to the room for some drawing and a pre-lunch snack. Judi and Max dropped in because Max had an appointment at the hospital (quick healing Max) and Max drew an amazing freehand picture of a frog that Sammy loved. A little after that Bubbe and Zayde arrived with a much cherished (and devoured) fish sandwich. They kicked me out of the room to avoid getting the Hospital Twenty (similar to the freshman fifteen, but much harder to work off).  While I was at the Wisconsin Athletic Club across the street, Zayde and Sam played math games, even one that included rolling dice and creating math problems from the roll of the dice. They had a great time together.

Bubbe and Zayde left with dirty laundry in hand a few minutes after my return. Sammy felt a little nauseous a bit after that so we stayed around the room. Sammy drew a lot of pictures today.

 Sam's version of a Whangdoodle

Sam's most intricate drawing of the day with animals above and animals underground

 Just before bedtime the music therapist showed up and asked Sam if he'd like some music. The movie was quickly paused and shut off with a resounding "I'd love music!"

Sam loved playing the drums, large and small and played the beat to whatever songs the therapist sang. Then they played a song game where Sam had to play certain beats when she sang certain words to "In the Jungle." It was a great end to a mellow and satisfying day of healing. Every morning the docs talk about how Sam's immune system is still non-existent and yet the boy we spend the day with is inquisitive, funny, snarky, hungry and occasionally a little nauseous. He is a marvel. He gives me strength. He gives me hope that all this is working and he can handle anything we throw at him towards his eventual bone marrow transplant and a long life of health.

Every moment of the day was blessed with Sam's shining spirit which is the strongest thing helping all us adults get through this ordeal. Thank you to all of you who help make the days go quickly and all your prayers that fill our lives with warmth and love. Together with the cards and all your support they continue to help us tackle each day, one at a time, as the sun rises and sets.

Last Chemo {Day 15}

Did you know that sometimes the chemo protocols start with Day 0? No one could quite explain to me why the first day of our inpatient stay and chemo protocol was called Day 0, as opposed to Day 1. So while we here on our blog are sure that we've been in the hospital for 15 days, today was only Day 14 of our chemo protocol. Whatever works for these medical people....whatever gets my kid where we need to go...

Day 14 was a BIG DAY! It was the LAST day. Woo hoo!

It was totally uneventful, as you can imagine:

It was so uneventful I almost missed taking this picture of it! Sam is watching a movie.

The rest of the day was too. There were math games with Zeyde...

Crossword puzzles with Bubbie...

Laps with Mom....

Headstands in bed... (yeah, I like that you can see the "Fall Risk"yellow wristband he's wearing while doing a headstand in his bed. Oy vey.)

Dinner from a local Mexican place was well-received by Sam, who pronounced it "just like Tacos el Norte" and therefore perfect. (Milwaukee's Mexican restaurants clearly have a high standard to live up to -- we've yet to match Curry Hut but thankfully we can somewhat replicate our favorite local Mexican joint!)

And Sam was thrilled to see Dad when he came up late this evening! So thrilled that they decided to take a bath for old times' sake! Okay, just kidding. A week without a bath was enough to make for a slightly stinky Sam. And the conversation went like this:

Sam: I said I wasn't taking a bath for 18 days!
Me: But I didn't agree to that.
Sam: You said I didn't have to take a bath for a loooong time!
Me: Good point. A week IS a long time to go without a bath. Do you want to do it now before Dad gets here?
Sam: No, he got really good at it. He likes it!

This was not true, as evidenced by the look on Michael's face when I told him that Sam needed a bath tonight! Oh well. A bath was had and I can tell from this picture that they sent me that it was not so bad...

And now the waiting begins. His counts have almost completely bottomed out and we are now just in the "awaiting counts recovery" phase. They tell us this could last quite a long time -- we just take it one day at a time....

Remembering {day 14}

A year ago today was a memorable day. It was, like today, the last day of Sunday School. It was also the day of our spring piano recital.

And I clearly remember that it was the first time that Sam told me that his legs hurt.

May 20, 2012.

He wasn't diagnosed with leukemia until June. But on that day, this odyssey began. I remember saying, "don't worry, I'm sure you're fine" and "maybe a bath will make it feel better" and other things that didn't really work and barely make any sense any more.

I woke up this morning remembering that day.

Sam on May 20, 2012

This year, Sam is in the hospital. We are on a path that I don't think I could imagine in my wildest nightmares last May. But we're doing okay. Sam is doing okay. The road is incredibly rocky. We are not even nearly at the end of the journey. It feels more and more like a grueling marathon.

But we're doing okay.

I never imagined the love and support that would flow our way. Not because I didn't believe it was possible, but because I just couldn't envision the myriad of ways that all of you would come together to lift us up and carry us along in this river of fire. It has been the greatest blessing, and we are so very grateful. Thank you.

--

Today was uneventful for Sam.
We spend a lot of time keeping him occupied. In between snacks and drinks and walks and books and movies and such...I think we're doing quite well. Weekends are quiet in the hospital, so we can go downstairs whenever we want.

 The weather was spectacular, so we spent at least an hour today in the Healing Garden....well, healing. And hunting for bugs and checking out the newly planted flowers. We took a long walk (almost half a mile, I used a pedometer app to check it out) over to the cafeteria of the adjoining adult hospital (Froedert) for dinner. The Children's cafeteria isn't open on the weekends. It was a nice little outing for us, even though Sam only got cereal and yogurt!

We love all the book and movie suggestions. Tomorrow we'll play games and write notes and do puzzles and stack states and countries....and we are ready.

In other news, this happened in our family:

So proud of my David for chopping his hair off in honor of Sam and raising money for the MACC Fund along with 7 other boys from our synagogue. There were also about 10 kids who donated hair to Locks of Love. It was a pretty amazing day.

And so it goes... {day 13}

A quick update....Friday and Saturday were nice quiet days for Sammy. He was sad to say goodbye to his buddy B who went home today after he finished his chemo (but yay for B and family!) and he spent the day hanging around with Uncle Josh and eating McDonald's (you're shocked, I know.)

Tomorrow is the big day for David's buzz cut. Click here to donate to support the great work of the MACC Fund: http://teammaccfund.kintera.org/faf/donorReg/mobileDonorPledge.asp?ievent=426280&lis=1&kntae426280=737FED0E002D42139B8A789BCD0F60AC&supId=379026846&team=0&scWidth=320&extSiteType=

All our love to all of you....