Thursday, May 30, 2013

Surprise! {day 25}

We started our day with the Presidents.

Before the biopsy, waiting for anesthesia....
And after, finally eating!
And then...surprise!
"Hey, Sam, want to go home???"
And so....we were off....home. For the weekend at least.
Check out this happy backseat:

Tonight, we saw this:

Certainly a rainbow is a sign of hope, a sign of blessing, a sign of the promises that God makes to bless and keep us, to protect and guide us. Blessed are You, our God, who remembers the covenant...

Biopsy results are still pending. I hope to have something to share before Shabbat but it might not be until afterwards. 

Wednesday, May 29, 2013

One Step at a Time {day 24}

Rabbi Shari came to visit us this morning. She challenged Sam to a little friendly competition. She is a serious walker and and she wears a pedometer. She loaned him her spare (yes, she has a spare in her purse) so he could see if he could walk 10,000 steps. Together they walked....quite a few. I can't even remember. I couldn't keep up let alone get a picture of this craziness! (You can sponsor her birthday walk in the Avon Walk this weekend here.)

For the rest of the day, Sam worked on some multi-tasking:

Halfway there!
 He discovered that he could lay on the bed and move his legs, and the pedometer would register. Yeah. accurate are those numbers? Well, if he's moving, I'm happy. So we'll call it a day. Sorry, Shari...

Around lunchtime, Rabbi Steve came to visit. We are actually certain that we're winning for "most rabbi visitors in a week" -- especially if you count Mom and Dad!

Rabbi Steve likes to make an entrance:
"I'm just lion around," he said to Sam....yeah. He did.
Sam continued to be his feisty, cantankerous self. He definitely made Dr. K chase him around the room a bit to do the stethoscope-listening-thing. We can't complain about his energy level, right? We can't complain about much at this point. Sam is eating, drinking, moving, talking, he even started to learn the Presidents thanks to Teacher Teresa. (Once you've moved beyond Stack the States and Stack the Countries, the next game to try is Presidents vs. Aliens. Have a good presidential chart handy.)

Okay, so we CAN complain about the continued uncertainty of his labwork. The whole thing continues to concern our medical team, and today his ANC had a little dip down to 60. The bone marrow biopsy is officially scheduled for tomorrow morning....and hopefully we will have some very concrete answers, but most likely not until Friday. 

No matter what the results are, we know that we are not at the end of our journey. We are still very much in the middle, even somewhat near the beginning, depending on how you look at it. The doctors are being incredibly attentive and answering every question I throw at them -- even the ones to which they just have to say, "I don't know." I do know that they have contingency plans and ideas and options. The only way to go is forward. And so we keep on step at a time.
10,000 steps! *at 9:35pm...finally!

Tuesday, May 28, 2013

In the Wilderness {day 23}

I'm standing right outside Sam's door, talking to one of the doctors today.
Sam comes racing by.
"Mom! My spider is sick! I need a mask so I can operate!"
He holds the spider up:
"His counts are rising but his platelets are only 2 and he needs blood!"
And so he proceeded to operate....
(At one point he came out to where we were standing and said, "I don't think he made it. He died." And of course, I was already into rabbi-grief-counselor mode. "Oh, honey, that's so sad," I said. The doctor, however, had a different response: "No way! Go back and revive him!" And then Sam came back and said, "He was just sleeping without breathing. He's better now.")

Perhaps this is a sign he's been in the hospital too long.
Or maybe the fact that he made his own plates out of staples and paper...
Or that he ate pizza for breakfast. (Or wait, does that mean that he's getting ready for college?)
Or that we've been here long enough that the nice people who bring the stuffy-animal gig remembered him....
Or that a really quick visit from a friend was a nice distraction...
No matter how you cut's been a long time. It's starting to wear on Sam. He's not really being mean or angry, he's just overly silly and feisty and cantankerous. He isn't interested in walking laps or much else. He spent a LOT of time today using a stapler (oy, thank goodness he got platelets today) and creating large scale art installations. Packages were a great distraction, but our little patient is way less patient with everything and everyone. Sigh.

Which brings me to the question that I know is on your long are we going to be here?

Sam is on this medicine:
I'm sure I'm breaking any number of hospital rules by posting this.
It stimulates bone marrow growth, and helps to increase counts quickly. Sam's never been on this drug before, but it's part of this new protocol. So yesterday Sam had an ANC of 72 and today it was up to 95. Woo hoo!

But there's more. The sample today showed blasts. What does this mean? Well, frankly, we don't know. The doctors looked at the sample and agreed that there are immature cells present. Are those immature cells leukemia? They don't know yet. This medicine that got his counts going so quickly can also cause the body to "throw off" cells at all stages of the cell-life-cycle and so these might just be little baby healthy cells. Or they might not.

The only way to tell for certain is with a bone marrow biopsy, which is now scheduled for later this week. I don't know yet when we'll go home but we're hoping that it is soon after the biopsy. It is much earlier than we ever imagined we might go home on this protocol, but the uncertainty of today's lab results casts a wide shadow over the usually exciting experience of "rising counts."

I asked one of the doctors if now was the time to panic.
He said no, no panicking yet....just worrying.

Trust me, I replied, worrying is already on my agenda.

So the results are worrisome but inconclusive. Hopefully we'll have a conclusive answer soon, maybe even before Shabbat. We're in new and unfamiliar territory, and frankly, I don't much like it here. I prefer the nice cozy woods we were in before. Now I feel like we're out in the middle of the wilderness, wandering and afraid. But as I type this, I know that I only need to scroll back to the top of this post to see my Sam, in all his sparky and snarky glory, doing surgery with chopsticks on a rubber spider...and I know that our wandering in the wilderness is not done alone....he leads and lights the way.

Monday, May 27, 2013

Traditions {day 22}

Today we engaged in all the Good, Solid, American Memorial Day traditions:

Apple pie (not pictured) and donuts for breakfast:

A picnic for lunch (are bagels traditional?):

A parade:

Playing with the plagues -- wait, wrong holiday. Also, snakes are not a plague...purists.
Pizza for dinner:
Yep. Totally normal. Right!?

The foggy weather outside might have been a bummer for most of your outdoor Memorial Day parties but it fit in just right with ours...silver linings, people. Silver linings.

I might have some news on Sam's counts tomorrow. Ah...the waiting game...

Sunday, May 26, 2013

Quiet Holiday Weekend {day 21}

Although Sam did spike yet another fever overnight, it was so much quieter than Friday night. (And he was nice enough to spike the fever at about 5am, just in time to let me catch a glimpse of the beautiful sunrise outside our east-view room. Always a bright side, right?)

We were very sad to say goodbye to our friends from California this morning. We only had a few minutes, long enough for the boys to make a little hospital-bed-fort and watch a few minutes of SpongeBob. (Seriously, that yellow sea creature is haunting me.)

The rest of the day was relatively mellow. Sam is still running a low fever, so he's feeling just a little lower energy than usual. That didn't stop him from some serious multi-tasking. Here he is flushing his own lines while reading a brand-new library book:
The hospital is very quiet and empty on this holiday weekend. I can't help thinking back to last year's Memorial Day party at our house...Sam was on the couch, in quite a bit of pain, as we still didn't know what was wrong with him. We still thought it was "growing pains." It wasn't all bad -- he had times when he wasn't in pain (its status as "intermittent" was part of what perplexed us all). We went to the pool; it was the only time all summer that Sam got to swim.
Memorial Day swimming 2012
It's very strange to look back and remember so very clearly this time last year. I think that for the next few months, I'm going to be thinking back, reminiscing, and feeling the weight of each "anniversary." Last night I finished our family photo album from this past September through November. It was so very strange to see the pictures of Sam's line removal, of his birthday, of our Thanksgiving celebration that was so very full of thankfulness. To look back and relive those moments of happiness helps me to know that we will again celebrate. To look ahead to this year's birthdays and Thanksgiving and believe that we will celebrate.

I was asked recently to look 2 years in the future. I definitely didn't know how. Frankly, I can barely look 2 minutes into the future! But we just keep putting one foot in front of the other, living one day, one minute at a time, and know that the calendar will come 'round again. Each day will always have its memories. Each day will always have its good moments and its bad and downs.

So we continue to be here, supported and loved by our family and friends, blessed to have the benefits of amazing medical care and secure in the knowledge that Sam is truly in the best of hands...

Saturday, May 25, 2013

Why We are Here {day 20}

Friday afternoon and evening were amazing. Sam spent many hours with his friend Jake, while I had the delicious pleasure of grown-up conversation with my friend (Jake's mom), Kimberly. Jake had a bone marrow transplant over 200 days ago and he's doing great. In fact, so great that he had his central line removed today! Hooray for Jake and his whole family. What an incredible milestone. You might remember that Jake was at our bell-ringing ceremony last January and I said "soon by you" -- here they are, so happy to see him healed.

About 1:00am last night (Friday into Saturday), the nurse woke me up to let me know that Sam had spiked a fever -- 102.8. She had, as was protocol, alerted the resident on call. When he came in a few moments later, there was an immense concern about his blood pressure. Not only was he feverish, but his blood pressure was quite low, and they checked and rechecked, using a manual machine in addition to the automated one that is usually used.

I was, you can imagine, wide awake.

But Sam was too. We turned on the lights so the doctor and nurses could work better, and Sam was...well...chipper. He cracked a few jokes. He answered questions. He gave us little smiles. He even corrected me when I said something about the time. "It's one in the morning, Sam," I said. "No, mom, it's actually 1:25am," he replied. Right.

I sat on the end of his bed and watched as the room filled up with nurses as they pumped Sam with some rapid fluids to get his blood pressure to rise. I watched the resident check and recheck his BP and I learned quite a bit about what goes into blood pressure numbers and what we want and don't want.

And I heard the letters ICU. A lot.

We have a saying in our family: "They don't put FINE people in the ICU." I told the doctor that I'd prefer that Sam be "just fine," and therefore not over there (it's on the same floor, the opposite wing). He agreed...and while we were worried for quite a few hours, and even had a visit from two ICU staff people to do an assessment of his blood pressure, we stayed put on the HOT Unit. (While ICU stays are actually common for HOT unit patients, we are so extremely grateful that we've never needed that kind of care for Sam.)

Finally, after what I believe was about 1500mL of saline pushed into Sam at a pretty rapid pace, his blood pressure began to stabilize. Labs were drawn, cultures taken, urine samples sent, antibiotics added to the cocktail he's already on. (Now he's on 3 broad-spectrum antibiotics, if you're keeping score at home.) At about 3:45am, we started getting consistently normal readings. And he lost patience with us as he started to feel better and rolled over and went to sleep. I waited for a few more "normal" readings (taken every 15 minutes at that point) and then I, too, went to sleep.

The staff were calm and efficient. They were remarkable in their ability to be calming and purposeful in their work. Truthfully, I wasn't even totally sure of the implications but I knew that this had the potential to be Very Bad. I just....prayed. I couldn't help but think of a prayer that is said only in the evening...

Hashkiveinu Adonai Eloheinu l'shalom....v'hamideinu malkeinu l'chayim.
Help us, O God, to lie down in peace....and help us to rise to life.

Everything bad seems worse at night. Awakened from sleep, I was so comforted by the nurses and doctors who don't sleep. Who are fully awake and present in their work when I can only find it within myself to sit and breathe and pray.

The morning was a tad rough. Sam was super grumpy and tired, and didn't really come out of his sleep-deprived-foggy-funk until at least 10am, when we watched James and the Giant Peach while eating a nectarine. The rest of the day was a little sleepy. Both of us napped. The nurses and doctors were extra attentive to his temperature and blood pressure...and we kept extra fluids running all day.
This is why we are here. His immune system is totally wiped out. Fevers are expected but always a source of concern. Infections are a worry. Fungal infections, skin infections, line infections, mouth infections....heck, you name it, it could be a source of infection. We just put our trust and faith in the skill of our doctors, in their vast experience that helps them not to say "wait and see" but to act as fast as they can in the best ways they know how. There are no trips to the emergency room because we are right here, with attentive and aware and incredibly fine medical care at our fingertips. And this is why we are here.

And so we wait. More days of zero counts are ahead. Keep us in your prayers....

Friday, May 24, 2013

Magic {day 19}

While I wish the title of this post meant that magically we had been whisked away from the 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 a former writer and artist on that show:

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!

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

Wednesday, May 22, 2013

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.