Family and Friends {Day 8}

Sam had some turbulence during the night (nothing a little anti-nausea meds couldn't handle) and then rested until morning where he woke up bright-eyed and bushy-tailed. Nurse S took amazing care for us throughout the night as he always does and will do tonight. Nurse E was amazing yesterday, so caring and loving to Sam, always so attentive. And today we had the tower of power, Nurse LA, talking Sam up and getting giggles and phrases from him where most people only get monosyllabic answers. Watching the two of them interact is like watching the Odd Couple live together. True love has never been so apparent.

It was a day of adventure with many friends and family visiting. Sam's in-house tutor stopped by and looked at all the math he had been doing with Zayde and me yesterday. Then Bubbe and Zayde showed up just as Phyllis and the kids arrived downstairs. I went to help Phyllis bring the kids up while Bubbe and Zayde entertained Sam for a bit.

Everyone played so nicely enjoying Sammy's amazing spirit and health for the day. Then close to lunch all family members packed up and headed out for a day at the museum. Where they discovered Z really is for Moose!

A few more boxes arrived with some incredible thoughts of love and hilarity. An amazing cookie bouquet, more amazing mustaches, a yodeling pickle, a see-through frog anatomy puzzle and an incredible box of snacks and games.

As we walked out to play some video games, Sam was sidetracked by the amazing Art Therapist who intrigued Sam with the idea of creating his own mask. The three of us talked about Sam, our favorite colors, what we like to paint, draw, create and Sam calmly painted a beautiful mask.

Just as we were finishing the art, Sammy's first grade teacher from Oak Terrace showed up to spend an incredible afternoon talking, teaching and learning with Sam. Sam loved showing Ms. M. all the math and Spanish he had been doing the last few days. The two created a plan for his future work and laughed throughout the time they spent together.

The hospital Chef sent up his entry in the Mac-n-Cheese contest, but Phyl's won out in the end. Chef got Sam to try a few bites before he declared it good, but too cheesy (is there really every such a thing?!! I tried it when he was done, it was good, but definitely too cheesy and buttery compared to Phyllis' famous Mac-n-Cheese. Doc M already has her order in for a future pan to be delivered. Phyllis certainly has her cooking work cut out for her).  Sam thoroughly enjoyed the twizzlers from the large box of snacks, and the cheez-its, the Famous Amos cookies, and is currently chowing down the Pringles. HUGELY successful Snack Box!!! I have to say this is one of the best intake months of chemo for Sam. I think he knows he doesn't have to starve himself and the anti-nausea meds are working their magic.

Towards the end of the day, Dr L stopped by from her dermatology rotation just to hang out. Sam recounted all he had accomplished during the day and showed off his beautiful mask. He impressed her by downing three servings of The Famous Mac-n-Cheese. 

And then we settle in for the night. Brushing our teeth and swishing, shedding the day's clothing for PJs, a last drink of water, some anti-itch cream, and the Shema to sing us gently off to bed. 

The city view is beautiful and silent from up here at night. It is a view of the whole city, the outside world, so close and yet so far away. I know we will get there again, all of us, as a complete family, someday. But up here, you live moment by moment, a minute at a time, an hour at a time, each conversation and project a stepping-stone closer to the end of the day. Each visitor and friend a shining burst of light adding such color to our days. As the lights go dim, and the ambient light fills our room I breathe just a little in amazement at how fast and slow it all seems to go. Thank you for all your blessings in our lives and all the prayers you bathe us in each day. We feel them. They hold us up. They shower Sam with strength and a fortitude even he didn't know he had. They make it possible for us to carry on and be there for you too, and for our caregivers. With all of you supporting us you make each day go a little quicker and seem a little brighter. 

With infinite love and gratitude you I thank you for blessing our lives. 

Bad Night, Worse Morning, Great Day! {Day 7}

After a great day yesterday, Sam spent a restless night fighting a rash caused by his treatments. His skin itched a lot while his nurse and doctors tried to figure out an antihistamine cocktail that might gain him some rest. He spent the night groaning and itching. I spent the night praying. Rest was not to be ours.

Sam seemed to wake up in good spirits at 7 am and then crashed into a my-life-sucks tantrum around 8:30 am. It was agreed during rounds that he should receive blood today since his tantrums are usually an indication that he needs some help maintaining his counts and his good spirits. After rounds I gave Sam a little bit of perspective as he complained how he is the only one in his family to be sick. I asked him if this hospital was empty. I asked him if he saw little kids the size of Solly and smaller on his floor. I asked if this building was empty. I helped him see that while this sucked, he was not the only kid going through this. I explained that hospitals, like this one, are filled with sick and healing children throughout every major metropolitan city in this country. I talked about countries that don't have hospitals like this where children get sick and die simply because they can't get clean drinking water. I explained that not everyone has siblings that are perfect matches to help them get better. I held up his blessings and I held up some of the scourges of life on this planet. With tears rolling down my face I held up a mirror of reality so that he might see the difference between life sucking temporarily and what real unfairness looks like in this world. I'm not sure if it was my speech or my tears that quieted him down. Maybe the meds just kicked in and the itching just stopped.

(ok that's only sort of what he looked like this morning. 

Really that is just a great face he made when he lost a point during our amazing Wii tennis match)

And then Bubbe and Zayde arrived with some superfood for Superman Sam. (We ran out of mac and cheese.) We ate, and talked. Sam wasn't thrilled with the lack of math problems he received in his homework from school. First I created a few pages of math problems. Then I had him write me a story in Spanish. When my math problems didn't prove challenging enough Sam had Zayde create another page of math problems and when those were done and Bubbe and Zayde had to go, Sam had me make a more challenging set of math problems just like Zayde's set.

While waiting for blood to arrive to help Sam's counts and hemoglobin Sam had rebounded so much that he was up for some Wii tennis. First he played by himself. Then when he was ready to crush his dear old dad, he invited me into the game. Connors and McEnroe would have been proud. Sammy was so joyous you would have thought his evil twin had taken his place briefly this morning. But this is how it goes when you've been away for five months and forget symptoms of a body's progression through chemotherapy. It is what it is.

In the midst of our major tennis matches downstairs called to inform me that the mail delivery person was simply coming directly to our room to drop off the 23 packages that arrived today. You all really know how to make a little guy feel loved (or at least showered in gifts and prizes to try to distract his geographical awareness from remembering that he is living in the hospital once again). And let me tell you it worked.

Sam devoured his gifts as if he'd never received anything before in his lifetime. He was like a kid on his birthday or Erev Chanukah. He got amazing books and gadgets from Rabbis all over the land. He got a wonderful D.A.R.E. kit from Chief Rotella of the Upper Saddle River Police Dept. with pictures of their really cool D.A.R.E. Truck. Some of my other kids still have D.A.R.E. shirts from when Asst. Chief Cuozzo was D.A.R.E. cop in Orange, CT. Battle of the Departments! I feel a softball tournament  in our future to raise money for cancer! NJ vs CT perhaps? I know training for Marathons is more Chief Rotella's style but departments joining forces to battle cancer can't be a bad thing. Support your local officers!

It also helps to know a famous young adult and children's books author. My friend, Erica Perl, sent two signed copies of her incredible books for Sam to enjoy. It was so warming to think of a friendship reunited after 28 years being honored in such fashion (THANKS NeFTY! Still paying dividends after all these years).

But really, gift after gift, they were all so incredible. We know it isn't all about gifts, but Sammy still takes such pleasure in both receiving the gifts and in choosing what presents he will share with the rest of the kids in the hospital. He could clearly tell that the girl books were meant for both his sister, Yael, as well as for girls here in the hospital also trying to get better (He was pretty sure the glitter nail polish set was for Solly's pink toe nails). His mother was sure that the Michigan T-Shirt was for some other family in an entirely different state. 

This incredible collection of t-shirts of all superman shapes and sizes (socks and a hat too!) came all the way from DENMARK!! Sam is excited to share the clothing with his family and other kids in the hospital. 

One large box contained almost 100 individual books and items for Sam and kids here at Children's Hospital. 

When emptying the box it seemed like Hermione's handbag in Harry Potter 7, bottomless. It had room for everything needed. Countless books and games for boys and girls of all ages. It was incredible to behold and so overwhelmingly generous.

And upon completion of unpacking everything Sammy dug in to build a wood model airplane (once the nurses procured a screw driver for him).

This took us into early evening, to dinner time, movie time, a happy, go lucky Sammy who seemed to lose all his cares about being in the hospital once again. A gracious, rambunctious and funny kid, the furthest place away from the unhappy tantrum throwing kid who greeted me this morning. 

He was comfortable for the first time in days. At ease with himself and all the nurses. Giggling, playing and just enjoying the amazingness of it all. He was my son, back from the brink chemo often takes him to. Back for a day of being grateful he is loved by friends and family alike. So thank you, all of you (you know who you all are! Yes, you, the ones we probably told gifts weren't necessary, but you ignored us anyway). Thank you with my eternal gratitude for being so amazing, so generous and so loving. The names didn't track with Sammy who didn't recognize most of them. But they meant the world to Phyllis and I who can't believe sometimes how truly blessed we are to have you all in our lives. 

Thank you. 

My best friends...Mac & Cheese {Day 6}

It was a rough night. Sam fell asleep at 7:30 pm for what I thought was the night, and then woke up bright-eyed and bushy-tailed at 9:30 pm. He was very frustrated at 11 when he still wasn't tired. I was frustrated with the whining. "Sam, accept that you aren't tired and let's move on from there to plan all the mayhem and madness we might experience!"

We read Z is for Moose (MY NEW FAVORITE BOOK EVER!) and watched a little screen. Finally at around midnight Sam was ready to try once more and a small bribe didn't hurt to give him incentive to close his eyes and relax. He grumped here and there throughout the night, but I just rolled over since none of his grumping needed immediate attention. I was amazed when, at 8:30am, he piped up in his sweet voice "Hello, is anyone else awake in here?" Usually I would pray to sleep late, but for Sam it meant that his body was recovering if he was awake so late and up so early without being exhausted. He didn't even need a nap all day (no, I did).

His best friends in the world in the hospital, his mama's Mac & Cheese, sustained Sam all day. From breakfast, to snack, to lunch, back to snack and finally to dinner, Sam asked if his two best friends would dine with him all day. Sam ate like a real trouper and kept it all down. Real good signs even though he claimed to be too nauseous to walk around the unit.

Grandma came mid-day and Bubbe and Zayde arrived a little while after. Sam worked with Grandma drawing a book together. Sam has become an incredible freehand artist. He was very disappointed when some of his pages ripped when he tried to remove them from his book. This turned into thirty minutes of tantrum hell as a hunger crash accompanied this set back. With food and some incentive, I was able to coax Sam literally back to the drawing board. He preceded to render Eric Winter's vision of a snail just by looking at a copy of Alef is for Alien.

Sam never ceases to amaze me. The Gargantuan continues to frustrate him as he tries to draw the alien from Gimel is for Gadol. 

I was told I was remiss for not including the "Hair today goon tomorrow" photos except for my favorite mohawk shot yesterday. I claimed artistic license, but was called out on the fact that I just plain forgot to include them. 

Here of course is my favorite image of Sam and how I think his hair should look all the time, even when he accepts his diploma from Harvard Law School someday (a father must dream!). 

The shearing continued of my young sheep as his glorious hair fell to the floor. Sam didn't believe me, but in five months no scissors touched his hair and it grew to the longest it's ever been in his life. It came in wavy and curly and allowed him to play with it and style it when it was wet.

A picture from the curly-hair-days not too long ago...

He took such joy in being able to play with it and make it do his bidding.

And yet his soul shines whether bedecked with hair King David would have been jealous of or shorn like a fresh recruit for the Navy Seals (he truly believes he will grow up to be a Ninja if he watches enough of Disney XD's Kickin' It on Netflix ...Netflix has truly saved us on this endeavor. Sammy turns down almost every movie I bring back from the HOT Unit's secret closet. I swear he wants me to bring him Disney/Pixar movies that haven't been made yet as if I have some super powers to do such a thing.) 

Sammy's Howie Mandel sense of humor is always en fuego when he's up for it. He is a comedian, an actor, a singer and a dancer on his best days. And of course Uncle Josh could not go unscathed. Payment must be made for Sam's locks to fall from his head uncontested. The price, all of Josh's facial hair in exchange for Sam's peaceful acquiescence (better than arm hair like last time). 

A small price to pay when victory is so close at hand:

Sam's imagination and grasp of the world astounds me and leaves me speechless. He brightens our world almost every day (except when he's throwing a raging tantrum about not being able to sleep or due to accidentally ripped pieces of art work). He serenades me right now with his victory song as he crushes the legions of soldiers in Stick War 3. I wish you could all hear his victory song. Until I really thought about it just now, he's been singing for about fifteen minutes straight while playing. He's also reading all instructions out loud to himself. 

And thus day 6 draws to a close. I am hoping Sam sleeps better tonight than he did last night. No itching or rash today. One less nausea med than yesterday. One day further along in the latest chemo regimen, and one day closer to the all powerful Bone Marrow Transplant. Dr. M and I had a wonderful conversation today. I assured him that I only sleep well at night because I know that he is part of our family's team. During this travel through hell, Sam, my family and I are always surrounded by what we believe to be the greatest angels ever trained in medicine. And so we rest for one more night in Base Camp Milwaukee blanketed in all your love and prayers.

Dad & Dinosuar Eggs {chemo day 5}

After a nice, warm welcome and a little intake of a "Dinosaur Egg" (aka Donut Hole) from Tom's Pastry in Highwood, Sam has been resting most of the afternoon. I arrived at around noon today, took notes from Uncle Josh (my brother, Sam's uncle), and took my place next to a very-glad-to-see-me Sam.

He's exhausted, was nauseous and now is resting. He was so excited to receive some incredible candy apples, iTunes cards (his favorite), games, books and books on CD. He loved the dragon poster I made him and put up some of the early Alien art that Eric Winter had sent us in the fall. It is quiet. All we hear is the sound of the constant clicking from one of his devices administering his meds and the airflow in the room.

Passover's over, but I feel like we got left with one of the plagues. I've been writing this in my head all week as I try to stay between ok and completely numb. Questions in my head just keep tumbling over each other of why this plague returned when everything was going so well. Now, really, I know there are no answers. I tell my friends, to comfort them, that there are no answers and I know in all my soul that there are no good answers. We are dealing with microbiological warfare on a galactic scale that few if any of us can comprehend. 


We watch movies where swarms of aliens overwhelm the good guys and our brains can't really fathom the numbers of enemies we see on the screen. We just check it off as a lot. Well from month four to month five of remission, Sammy's nemesis went from zero to too many in no weeks at all, enough to put extreme pressure on his knees again, trying to go from inside to outside of his bone marrow. 

How does a seven-year-old tell you "Dad, the pain is the same as last time. Take me to the hospital now"? As parents, we don't want to be "Those Parents" running him into the hospital every time he gets a small bruise or a runny nose. So we wait and see if he improves from Tuesday to Wednesday to Thursday's "ok it's-serious-enough-moment, let's get x-rays again to make sure he didn't really break something," to Friday's regularly scheduled appointment where the doctors tell us everything we fear and nothing we want to hear. 

And our world falls in on itself. The walls seem closer. I am crushed as I watch him fight his inner beasts in a real world struggle once again. 

In his darkest moments, curled up next to me on our couch,  Sammy would squeeze my heart as he pleaded "I just want to go home." "You are home," I would answer. "No, I mean my real home." I have no answer for that. I have no answer for my 7-year-old who wants to go home before a time of illnesses and hospitals and cancer. A home where there is no pain, just joy, play, school, siblings, friends and our perception of normal. 

I receive so many Why and How questions. I continue to answer "Whose kid would you give this to if it wasn't my kid?" or I fall back on the 5-year-old girl, Jacyln Santos-Sacramento, who was run over and crushed to death this past summer and remind them that it can always be worse. My son is fighting the good fight surrounded by an incredible medical staff, friends and family. Two families and many communities will feel Jaclyn's loss for all times. There are really no whys and no one wants the gritty details of the hows. 

How about we are a most blessed family that has access to the #4 ranked Children's Hospital in the nation. We have one of, if not THE top bone marrow transplant specialists in the country (WORLD) who has become a personal friend as much as he's become Sammy's transplant doctor. How about the fact that we are blessed with a match within our family and not struggling against time to find a willing donor somewhere in the rest of the world (GET SWABBED! You could be the match that saves someone else's life).

When friends ask questions and I answer that "I am doing ok," or "I'm hanging in there," I mean it. I'm not just brushing them off. I also answer "Do I have a choice?" Because the answer is, "No, I don't have a choice." This won't go away. Sam needs me now, more than ever. This too shall pass. We all know what the bad outcomes are, but are most fortunate to have so many good options of positive outcomes possible to help us visualize our way through this. I'm not putting my head in the sand. I'm not running away to far away destinations where I don't have to shoulder my responsibilities (although Vegas does sound really nice right about now). 

So I am here reporting for active duty for my day one on Team Sam. This is life. Messy happens. We always hate it when it happens to someone we love, but guess what? It almost always happens to someone we love or to ourselves. I signed up for this when Sam drew his first breath, smiled his first smile and called me "DaDa" for the first time (ok, not all on the same day). No one said this would be easy. Some days, raising my own kids, I am amazed my parents didn't just sell me to science as I remember my own childhood behavior. So despite all the days I would sell my kids to science they somehow still wake up most days with a smile that reminds me why I keep them.  

Sam will get through this. We will all get through this. There will be some amazing days and some not so amazing days. We will pray that the amazing days always outnumber the not so amazing days. So remember that you all give me the strength to be as strong as I am for Sam. Your prayers, hugs, love, food, homes, children, spontaneous play dates, and evenings of laughter keep us sane and keep us focused. I couldn't do any of this without all of you. So understand how important your job is in helping me be able to do my job. Even struggling, I am the most blessed human I know.

With infinite love and gratitude, 
M

Better {chemo day 4}

Today was better.

Thank GOODNESS.

Sam woke up and asked for a banana. Progress!
Then he asked for yogurt and cereal. Woo hoo!
(I love the way these simple food items can make not only me, but our whole team of nurses, doctors and nutritionists cheer. I love how they all feel so invested in Sam's well-being. I'm kinda in love with our new resident who doesn't know us from before but can tell that the rest of the team cares so deeply...so he does too.)

Sam tends to get a little bit "stuck" in the way that he's feeling and not test out the possibility that he could be feeling better...so when I said it was a good idea to go for a walk, he said, "no, it will make me feel yucky." How do you convince him....maybe it WON'T make you feel yucky this time and it's worth a try?!

Answer: a lot of cajoling.

But it worked. He is feeling much better, he told me. Whew.

Sam was testing out the grown-up-size exercise bike on the floor.

Uncle Josh is wrangling Sam as only he can, and since I left they've told me that it's possible that there will be a shaving party tonight in room E584. I await the pictures from these two crazy characters. Sam's price for head-shaving may be Uncle Josh's beard....poor Uncle Josh.

Might I remind you (and him) that Sam had planned to shave it all off anyway?

Desperately trying to make a glove-balloon bigger than the one Rabbi Steve made. It's good for his lungs!

In case you are new around here or maybe you forgot, you won't hear much from us over Shabbat....so we'll be back on Saturday night with more adventures from Cancerland.

Peeking Through {day 3}

sunrise from the 5th floor

 Sam had a less-sleepy day today. He was still feeling pretty crummy and under-the-weather, but he perked up when Rabbi Steve came to visit. After all, Rabbi Steve doesn't give up. He finally got Sam into position for a rousing game of Glove Volleyball. Our friend Matt served as referee to make sure that there was no cheating, and let the record show that Sam crushed the good rabbi.

 He was feeling so perky after that, he ate a few bites of banana and agreed to take a walk! Progress, I thought.

It was short-lived. That one little lap was a little too much for our hero today.
He landed back in bed, where he stayed, albeit awake, for the rest of the afternoon.
It did help to open a package with some funny glasses:

 We've been working on his anti-nausea meds, and hopefully we have those under control now. It's a combination of keeping the nausea at bay while not making him too sleepy. There are other meds that are available to us, so we're just going to wait and see what tomorrow brings. Unfortunately, oncologists are experts in nausea management.

 A whole bunch of wonderful sweets came into our room today, but none tempted my little guy. He did like the silly string that the art-cart-man delivered. Oy. In case you're wondering, silly string does wash out of your hair. Not that any got into my hair today...oh wait.

 One of his perkiest parts of the day was this FaceTime with Solly. Solly was so excited to tell Sammy that he was using Daddy's iPad for the experience. Sam was trying to explain back to him that he, too, was using an iPad. Can you believe that both of these children will never know life existed before this was possible!? It is one of the best blessings: to have them, at the drop of a hat, be able to communicate with each other even when so far apart.

It wasn't a great day for Sammy but it wasn't really a bad day either. My sparky little guy is peeking through...I can't wait for him to re-emerge with his usual energy level.

 P.S. Sam knows about the stories that have been sent to him but he's mostly been too sleepy to read his email. Don't worry, he will have plenty of time to listen and watch! He's looking forward to it! Thanks to everyone :-) It was all Michael's idea and we are all so excited that you all loved it!

Oh So Sleepy {chemo day 2}

Sam had a bit of a rough night. The nausea kept him restless and uncomfortable, along with the fever that we believe is caused by one of the chemotherapy drugs. (I say that "we believe" because just in case it is an infection, they started a course of broad spectrum antibiotics and took cultures to check.)

So he spent most of the day sleeping. And resting. And sleeping some more.

His body is working superhard. This is the first time since last June that he's had leukemia in his body...and that must be why he's so tired and sick. That's what I keep telling myself, anyway. The medical people tend to agree with me.

It's just hard to recall how full of energy he was in the previous rounds. I'm waiting for his spark to come back.

But today was mostly spent resting.

I offered some distractions like books, movies, games....he wasn't much interested. A few times he perked up with a smile -- some not-so-funny jokes that I lamely tried to tell...he listened to a story on video sent by a friend....

Grandma read a few stories and tried to get him to play DragonVale. You know Sam is under the weather when you can't get him to talk about dragon-breeding.

Sam always likes his baths, so I suggested we try that this afternoon and he agreed. It didn't quite make him as comfy as I think he hoped it would, and he quickly got back into bed. Which is where he is right now...the nurses and doctors seem a little unconcerned, I think this is a "normal" reaction to this kind of leukemia relapse.

And so we rest, snuggled into our little nest on the 5th floor...hoping to sleep off the chemo, which has six more days ahead of us. I like quiet. I really do. But I'm realizing how much I miss my bouncy, high-energy Sam who resists bedtime. I know he'll be back.