Tuesday, July 31, 2012

Gold Medalist Sam (Round 2, Day 7)

If any of these were Olympic sports, Sam would be in strong contention for the gold medal in each one:

Nurse- and doctor-baiting/teasing/flirting: Sam has made a friend in one of the residents, Dr. L, and he spent the evening watching Olympics with her (and making her chase the paper airplane they were tossing back and forth). She even joined us on our walking laps. He chats with the nurses, he flirts with them, he listens to what they say and calls them out on it if they don't follow through...suddenly he is the polite, engaging, wonderful young man that I remember from about 2 months ago.
And wonder of wonders, he rested his head on my knee...
Lap-Walking: Wow. He completed 5 laps this morning, and when I suggested more this evening he balked. But then, he did it. He agreed...and he even did one above the negotiated number - and he was speedy! Plus, afterwards, he decided that we would hang out in the common space to watch the Olympics. We were joined by a handful of nurses and the on-call resident too...he was the life of the party! They laughed at his comments (like when one of the gymnasts hesitated on her bars routine, he said "maybe she has a boyfriend and she stopped because she was thinking about him." Where does he come up with this stuff!?) and they were impressed with his many, many (many) questions.
The Lap Counting Board
Question-Asking and Conversation-Making: Double wow. Question after question about everything. So much talking. Even when sitting on the toilet (too much information?), even when feeling pretty crummy - sick to his stomach and some painful stomach cramps - even then, he kept up a running dialogue. I loved every minute of it. Even if sometimes it gets a little overwhelming to answer question after question - thanks be to God.

Adapting/Growing Up/Being Resilient: Looking back just a few short weeks, I can't tell you how different Sam is now. Tonight he threw up (into a bucket, in the hallway, with the assistance of a handful of nurses) and then looked at me and told me that we were going back out into the common room to keep watching the Olympics. Totally unfazed. He isn't really eating...he's back on IV nutrition, but I think that Michael and I will get Calm Parent Medals for this one - last time it really freaked us out but this time we were much more comfortable with this as a "normal" part of the process. And we know that it isn't a permanent state of affairs.
There's the All-Around Gold Medalist himself.
Funny, quirky, witty, curious and all-around awesome kid.
I'm a lucky mama.

A Boy and His Bucket

It was an up and down night with Sam feeling nauseous and having to go to the bathroom every two hours. Through it all he was his loving and polite self. At 6am or so we just gave up trying for sleep and put on Star Wars: Episode 3. At one point Sam felt nauseous again, but was in good enough spirits to let me snap a photo with his trusty friend "Bucky."
Thankfully the nausea passed and the endless questions continued. Docs are looking into scheduling more consistent nausea meds and perhaps IV nutrition. I'm just looking into a nap later.

Monday, July 30, 2012

Superheroes abound! (Round 2, Day 6)

Sam lived up to his superhero powers today. He walked fifty laps while peppering his various walking companions with questions and random facts the entire time. With each lap he harassed Nurse L2 with tickles and wit as she fought back valiantly with her own tickles and wit.

Sam wore his new Chicago Bears slippers for every lap. I had to tamp down his anti-Greenbay Packers sentiments in fear of the staff giving him a tickle beat down. He seemed unafraid, but curtailed his taunts to his inner monologue.

Bubbie visited for a little and helped Sam open all his mail. My friends from Paris (France), Rabbi Tom and his wife Rabbi Pauline visited from camp. They took a video greeting of Sam for his brother David and then bid us adieu. Sam loved the Mini Eiffel Tower Lego set and keychain they brought with the pictures of their son at the real Eiffel Tower.

The afternoon saw nausea win a battle, but Sam rallied after a bit. Especially since he wanted to watch Spiderman 2 after watching Spiderman at lunch time.

Sam encouraged me to put up the SmugMug superhero photos and hand-picked the ones he liked best to go up. The wall and photos look AMAZING. J from Child Life got us some colored butcher paper and up they went. Thanks again to everyone in every picture. We love them.

All in all the highs of the day were too high for the lows to really get us down. Sam is safe in bed dreaming already healed as his spirit and body rest in preparation for another day filled with Sammy brilliance.

Some of the incredible pics-o-healing

Here are some of the incredible pictures we received from SmugMug (the full facial superhero make up pics are awesome!!) and our incredible friends and family.

Sam slept late, but woke up in an incredible mood with a huge smile. We went over morning questions left over from Star Wars Episode 2 ("why did Anakin's mom get sold?")

During rounds they said his numbers are still good for now (ANC 2500).
I will take as many good days as I can grab.
So we are looking forward to being unplugged in a bit and walking the halls of this entire facility.
Already healed and closer to home.
Infinite love and gratitude to you all.

Sunday, July 29, 2012

Round Two and the Crew's All Here (Round 2, Day 5)

Just because I know what to expect doesn't make it any easier driving north to see Sammy in his new room.

When I arrived Sammy was in great spirits, eating lunch with his friend Ben. Ben and his parents drove up to spend part of the day hanging out with Sam. The boys played with HexBugs and Hot Wheels and seemed to have had a great time when I rolled in.

After they left we got the PS3 in the room working and tested Star Wars Episode 1 just in case. On that note, Uncle Josh bid us adieu (SW Episode One has that effect on a lot of people). We then opened some incredible gifts from some incredible friends. Sam loved his new Chicago bears slippers, beach towel, pillow pet, bed chair/husband and some incredible games. (Phyl's note: Oy! Does he not realize that he's in PackerLand?!) One of his other new favorites is his stuffed Gryphon Hatchling he named Gryffindor.

SmugMug delivered some incredible pictures of some of Sam's many fans completely face painted as super heroes. The pictures are awesome to say the least.

We played the hot/cold game by hiding Sam's favorite new stuffed pets from ThinkGeek, Stem Cell and Bad Breath Germ. Fun was had by all as Rabbi Anne, Sam and I took turns hiding and finding the stuffed cell and gingivitis.

We had wonderful visits with Cantor Ross and his wife Malka and Bubbie. Jen Shaffer's good friend, Eric, stopped by on his second day of working here. He is a cancer survivor...who grew up and trained to be a nurse...and who came back to help the kids filling his old rooms on the HOT Unit. It was a very nice visit, hopefully the first of many over the next few months.

One of Sam's meds causes itching and a slight rash. We applied some cream to his legs and after we got ready for bed his nurse administered some Benadryl via IV. We watched Star Wars Episode 2 while waiting for the meds to help with the itching. I answered a lot of questions during the film.

My first impression of being back is that the new room has a better view and a better position, close to the nurses' station.

My second impression is that Sam's walking into the hospital on his own two feet gives him a whole different sense of power and sense of being here. He's playful and in a better mood. Knowing the nurses gives him a surer foot and a snarkier edge as both sides rib each other unmercifully. Nurse L gives back as good as she gets with her best frenemy. Sam does his best to hide his smile when she enters the room and was caught trying to tickle her today.

I find myself breathing easier this time around. I don't want to be here, but if Sam's here I don't want to be anywhere else. I am calm as he is calm. When he is good I am great because I know he's doing his best to handle all this biological and environmental chaos thrown his way.

The staff here all work their hardest to make us feel loved and safe and succeed on a daily basis.
Thank you all for your love, prayers and amazing generosity. Sam's health and good spirits are attributed to you all as much as to his own strength and the strength and good humor of those around us. May we all be strengthened each day to continue our journey on this path to the day when Sam walks away from these halls for the last time.

Already healed.

Saturday, July 28, 2012

Round 2, Days 3 & 4 - Rock the Socks

Every superhero has a gimmick, right?

Sam has his socks-and-crocs combo. Yep...you see it right here, people.... Combined with his awesome "stink-face" and adorable bald head, he's rockin' it.
Sam: "Seriously, mom? Are you taking a picture of me!? Let's go."
Zeyde (remember, he has a (k)new knee) got cleared to walk with just his cane, so he came to see Sam in the lobby of the hospital (secret sneaky mama trick to get Sam to walk downstairs) and they compared notes about hospital experiences. Sam was fascinated by his scar and how his knee was actually "replaced" (ew).

Sam is at this moment discussing knee replacement like a future M.D.
Sitting still wasn't in the cards, though, so he zipped off for a quick game of catch with Uncle Josh.
Rockin' the socks, right?
The chemo treatments are mostly run in the afternoon (there's a veerrry early morning (like 3am) run as well but we pretend to be asleep try to sleep through that one), so far Skinny the Pole is mostly off the case from morning until right after lunch. That has made it easier for Sam to get around, do stuff, enjoy himself, and then settle in for an afternoon rest. He still hates to travel with the pole, and the chemo definitely makes him nauseous and sometimes a little headachey, also itchy. We're not oblivious to the effects, but we're trying to pretend they don't exist...I think we're in the honeymoon phase of our hospital stay! (And I think it is progressively getting less and less fun to be in the hospital.)

Uncle Josh reported that our friends at ThinkGeek sent Sam a great package which include a small stuffed stem cell and bad breath germ. Who knew that these small gifts would give Sam so much to talk about! According to Josh: "He has proceeded to ask his nurses a dissertation of questions about where a stem cell lives: are they in your stomach? Can they really make anything?" I'm sensing, finally, quite a bit of interest in the biology and medicine after the last couple of days. My son, the doctor? A mama can hope, right? Maybe he will be the one to cure childhood leukemia once and for all....
Sam continues to flirt with the nurses (and try to make nurse L jealous...) and even when he's feeling sick to his stomach he continues to ask for "inappropriate" movies. Right now, Michael and I are looking through all of our DVDs and trying to decide which ones are most appropriately inappropriate for him! All suggestions welcome!

If you're keeping track - he did 7 more laps, making his lap total now 20. (I made him do the math over FaceTime.) Since we didn't quite make 100 on our first day out, we're going to do a cumulative accounting. 

Stay tuned for an update from Michael tomorrow, since he's headed up there to switch places with Uncle Josh. We are so amazingly blessed to have Josh in our hospital rotation. Sam loves him, they get along so well, and we are so lucky to have him in our lives!

Thursday, July 26, 2012

Spinning Donuts - Round 2, Day 2

There's a certain fraternity that grows up amongst the families on the HOT (Hematology-Oncology-Transplant) Unit. Many of us are long-termers, with month-long stays common amongst families with AML. And then there are other types of diseases and syndromes that cause various stays of various lengths.

On the one hand, it's a little comforting to know that behind the doors of the other rooms, battles are waging over walks and mouthwashes and taking pills. On the other hand, I wish we could all just go home. Behind the doors of the other rooms, there are kids feeling pain and sorrow, families hurting.

Every kid has a different diagnosis and every kid has a story.

But sometimes the stories are irrelevant.

Sometimes two bald heads spinning donuts with their remote control cars around the nurses' station is just right.

Meet B, another 6-year-old on the floor (in blue...Sam is in red, if you can't quite see him) and their cars. Their birthdays are just 6 days apart - almost exactly the same age. He's only here Tuesday-Friday this week.)
As we went into our room to eat our lunch, Sam remarked, "who knew that I would find a friend here?"

Our chemo is done in the afternoon, so this morning Sam was pole-free and totally interested in getting out and about. He decided to take on the task of 100 laps of the floor (the current record in one day is 85, held by a 13-year-old patient who spends an hour and a half walking each night) while driving the remote control car. We did about 13 laps before it got a little boring. (Then we changed the goal to see how many days it would take us to get to 100...22 is a mile.)

So we went downstairs to play catch. It was too hot outside in the Healing Garden, so we found a quiet-ish corner of the lobby and spent about a half hour tossing the ball back and forth.

(Vanessa gave Sam the ball, so we sent her this little video thank you since we were having so much fun.)

We blew bubbles and I satisfied Sam's craving for a donut with sprinkles by heading out to Krispy Kreme. The nurses benefited from this too, since how could I come back without a dozen or so for them as well? They say that they eat well when we are here, and anyone who knows my penchant for feeding people would not be surprised by this.

Chemo left Sam a little queasy but visitors brightened the afternoon....

And FaceTime. Wow, video-chatting on the fly seemed like science fiction once upon a time but what a life-changer. To have a window into the world of so many people that Sam loves is an amazing blessing. I can't imagine going through this journey without this technology
Sam and cousin Jack
As I write this, he is talking to a beloved friend and using that as a stall tactic for avoiding bedtime. Ah...some things never change!

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.

Wednesday, July 25, 2012

Camp Chemo Day 1

And, just like that...we're back.

Life at home was nice.
We rode bikes. We played. We hung out.

You know, six weeks ago we came to the hospital for the first time. Six weeks ago, this was a totally foreign place. Everything was new and uncomfortable. Our walls were bare. We had no idea what to expect. We didn't know how to handle things. We didn't know what to do. Sam was a wreck. He hated every minute of it. He hated his pole. He hated walking around. He hated every nurse and doctor and whatever-medical-professional who walked in the door.

And so did I.

Six weeks ago, walking into the synagogue felt like walking into home.
When I went there on Friday...it felt odd. Strange. Foreign.

Today when we walked into the hospital...I wouldn't say it felt like home, but it felt...comfortable. We knew what to expect. We were prepared. We brought posters and tape and scissors and comfy clothes and snacks. Sam knows everyone around us (except the new residents, but we will figure them out soon enough), and he bounded into the hospital, raring to go. Okay, maybe not raring. But definitely not kicking and screaming. There hasn't been a poke or a pain. It was a little like a homecoming.

Let me backtrack a little....the last few days at home have not been quite as much fun as we'd hoped. Sam ended up with a spinal headache from the lumbar puncture last Friday. Sunday and Monday were mostly spent laying down. We had hoped to visit David at camp, but we didn't. So instead, this morning, we made a little detour and headed up to camp before our hospital admission. One little hour of brotherly love before the incarceration admission.

What's a trip to camp without a ride on a golf cart!?
Worth every extra minute of driving, I tell you.

This is the way it works...we start in the clinic and then we wait....
 And wait...

Until finally....we got our room.
With a view!
Not only does our new room have a lovely view, but it has a better DVD player with a REMOTE (yay) and just a nicer layout.
Yes, that is a picture of Sam above with his new pole, named Skinny. You might recall that he hated the pole last time. Wouldn't go anywhere with it....complained about it all the time...wouldn't name it. This time...acceptance. I wouldn't call it love, but it is unbelievable to me how differently he is handling every single aspect of this experience.

Fish sticks for dinner (shaped like sharks...except for two that were shaped like dolphins, Sam said. He made me photograph the offensively shaped sticks in order to document for a complaint to food service about it. Seriously.)

We were warned that chemo is compounding. That means that the side effects can get worse with round 2. Lucky us. Poor Sammy did not keep all those oddly shaped fish sticks in his tummy for long. But thanks to a little Zofran, all was well again soon. Back to playing with his Hexbugs (how cool are those things - see first picture) and a remote control car.

Waiting for the Zofran to kick in
Sam volunteered to walk around the floor with his pole to he could drive the car. That was an amazing moment for me, since in our first round, he didn't want to go anywhere...I had to beg and plead and cajole. I know it's only day 1, but I am hopeful that at least some aspects of this stay will be easier than the last.

And so begins our second round of chemo...back in the hospital for another month-long stay. The lifeline of texts and emails and letters and packages and prayers and LOVE stretches from all of you to our little room in Wisconsin...and we thank you.

I read a quote today:

"Call it a clan, call it a network, call it a tribe, call it a family; whatever you call it, whoever you call it, whoever you are, you need one." ~ Jane Howard (anyone know who she is?)

We need it, and we have it.

Thank you for being our clan, our network, our tribe....our family.


In other news, people have asked to see this:
 Why yes, that IS a letter from the President of the United States. Sam now believes that this makes him famous. Thanks, Mr. President, you sure made a little guy VERY happy.

And in other famous news, welcome to readers of the ThinkGeek blog, who gave us a shout-out on Monday. We feel so blessed to have such a wonderful community around the whole world!

Same address, new room number:
Sam Sommer, E571 E582
Children's Hospital of Wisconsin
P.O. Box 1997
Milwaukee, Wisconsin 53201-1997