Monday, September 30, 2013

Sprung! - BMT +34

Yep! Today was the day!
Following Sam's biopsy this morning, it was decided that all the rest of the tweaks to his medicines and general care could be handled outpatient...and so we packed up and skedaddled!

His new little immune system is only 34 days old. So like a new baby, we will continue to be careful to limit his exposure to large groups of people and all the viruses and germs they may have. He might wear a mask, not necessarily to protect him, but to keep people away from him! (Let them think he has somethig terrible that THEY have to keep away from and it will work to keep him safe. Nice reverse psychology, huh?)

So what's next?
Many trips back to the clinic, to start. He needs some immunoglobulins this week (I am sure I will be able to explain that better after it happens) and regular check ups to confirm his lab results, etc. 

Many many kids are re-admitted in the first few months for fevers or infections, so we are hyper-aware of that possibility as well. The risks are many...the rewards are priceless. 

And of course there are the biopsy results. We are waiting for those as well. Hopefully we will have some concrete answers to the status of Sam's bone marrow by the end of the week. Are those SuperCells doing their SuperStuff?

Until then, we will rest and plan and find ways to keep our SuperSam super-busy and super-healthy! There's already been some out-of-the-hospital eating magic in the form of a peanut butter and jelly sandwich. Hooray!

Sunday, September 29, 2013

Super Bowl(ing) - BMT +33

Yesterday, Sam and I drove by a bowling alley. All summer long, we'd discussed bowling, but we never quite found a time to do it. He mentioned that he'd like to go bowling. Today.

"You know, mom, we went to the movies. Like a million people have touched those seats. Bowling can't be any worse."

How can you argue with that logic?

So we went bowling....all of us. (Have you ever taken a rowdy almost-3-year-old bowling?!)
Clearly Sam is building stamina, since he lifted a 6-pound bowling ball! 

One game was all it took, and then we managed to convince him to eat half a grilled cheese sandwich at a real restaurant. Woohoo!

Sam continues to get stronger. A few minor issues still remain....
Tomorrow is a big day -- will he be discharged or won't he? We don't quite know yet.
Like everything else....we wait and see....

We'll take lots of prayers tomorrow morning (more than usual, please) for Sam's bone marrow biopsy. We're going to learn more about how SuperMensch's 18 million stem cells per kilo are faring inside our own SuperSam....

One day at a time.
One step at a time.
One minute at a time....we move forward.

P.S. Since you're all always asking about the other kids, today was their first day of Sunday School (they missed last week for a family event) -- aren't they cute?

Saturday, September 28, 2013

Heart - BMT +32

I realized about 15 or 20 days ago that I had missed the opportunity to connect each day of BMT to a Psalm or explore the gematria of each day's number.

I've probably had other things on my mind.

But today is one of my own favorite number/word connections. The Hebrew letters that make up the number 32 are lamed and bet, which spell the Hebrew word "lev," which means "heart."

Oh, how this whole business has been a test of our hearts....our hearts which are filled up with the love of our family and our community, of all of you who continue to care for and support us....with the heart of our family sometimes here and sometimes there....hearts saddened for the friends we have made and lost....hearts full of joy for those who have completed treatment and live happy, healthy lives...

Today, the 32nd day of Sam's new life, we continue to be grateful for his progress and for the gift of each day.

Yesterday, Sam had one of his heart's desires fulfilled. All summer, he's been looking forward to September 27th, when Cloudy With A Chance of Meatballs 2 came out. The movie trailer was a family favorite all summer! ("There's a leek in the boat!") I was truthfully a little shocked that the doctors were okay with a movie for Sam, but I was not going to argue. So off to the movies we went!

We weren't sure how crowded the mall would be, so we decided to try a mask (it really didn't feel mask-worthy afterwards so it was only for a bit) and Solly wanted one too.
One of the things that we're realizing is just how much strength Sam will have to build up. Carrying the fluids and pump in his backpack is sometimes even too much for him. Since the tubes are connected to him, it's easy for someone else to help him out and carry the pack. Here's Yael, helping out...
I made them hold hands in case Yael decided to wander off with Sam's tubes attached to her back!
After the movie we went back to RonMac and Sam took a nap!

Today started out a little bit differently. Sam knew that his siblings were otherwise occupied today and his pass would be with just mom...and he had a few moments of feeling sad and crabby about that, as well as, I think, the aftereffects of the exhaustion of Friday. We both took a long nap for most of the morning and by 2 o'clock he was feeling a little more ready to go out. Unfortunately, it was still very sunny, so we only were able to spend about 20 minutes at the zoo. Also, Sam wanted to rest quite a bit while we were there...
Clearly we were underdressed. Who knew the zoo was black tie?
Sam asked to go to Starbucks, and what self-respecting mama would turn that request down? He likes those madeline cookies:
I can't tell you how hard it is to watch him be so tired all the time. We're going to have to work hard to build up his stamina and strength. I can't quite tell if it's the emotional impact of leaving the hospital, the physical requirement of the backpack, or some combination of both. I'm grateful that we've had these trial runs to help him acclimate to life in the "outside world." Most of today's outing was actually spent resting in our room at RonMac.

And so that's where we are, today, at the heart of it all....

Thursday, September 26, 2013

Count & Lift - BMT +29 and +30

Michael: Sam is counting the minutes. He is ready to get out of here. He knows he has to eat, but doesn't feel like eating. He tries new things and gets a few bites in before he is done or disinterested. Sam is doing great with his meds and swallowing his pills like a champion even as more pills are added as we wean him from IV meds. He doesn't even blink. He has his eye on the prize, sees where he wants to be on the other side of the window. I wonder if he dreams of the food he will eat outside just as he fights eating any food on the inside.

Phyllis: No kidding. The kiddo has been cooped up in here forever! Okay, just 40 days....I feel sometimes like we're on an ARK!

Michael: I promised to scare him with the scariest dinosaur movie ever. He was totally up for that (FINALLY!) so we watched Jurassic Park together. Sam thought it was amazing, not as scary as he thought it would be, and that the dinosaurs were out of this world ("Dad, why didn't they bring Samuel L. Jackson's arm on the helicopter with them?" "Um, Sammy, I think the dinosaurs ate it." "Oh, right, yeah, that probably happened.")

Phyllis: You showed him WHAT? Okay, fine. Hospital rules....

Sometimes they let BMT kids go out on a "pass" before they are fully discharged. They know that he's ready to be out in the "real world," but they're still monitoring how he does with the meds, etc. Also, they are reluctant to release a kiddo right before the weekend. So we're here....but Sam has already requested a pass...It doesn't matter how much time you get a pass for, out is out. And Sam can't wait to get out.

Michael: check out Sam's newly reduced IV pole -- just fluids and daily anti-fungals. He handles all the rest by PILLS.

Phyllis: Our kid is a rockstar. He takes after his dad.
Michael: Today we waited for our pass. We waited and waited and waited. The doctor said she would be here....and then she got caught in a meeting. We waited and waited. We even watched Jurassic Park. AGAIN.

Phyllis: We waited over at RonMac for the call too! We all wanted to go out on that pass.

Michael: Finally it was time. We got Sam all hooked up to his IV fluid backpack and he was ready to roll. He will need to be on IV fluids all the time, so this was also a practice-run for us. I was armed with his two o'clock meds and here we go....
With Nurse E, who helped get us all set up!

Mama + Sam
Phyllis: Sam totally wanted to go to the zoo. But because it took us an extra couple of hours to get out of the hospital and because it turned into a beautiful sunny day....well, our plans were thwarted. What's that, you say, how could sun thwart your plans?

Michael: Well, the doctors told us that we had to be extra careful about sun exposure because of the skin GVHD. It can make it much worse. So we nixed the zoo and went to....McDonald's for lunch!

Phyllis: He didn't each much more than a handful of fries but we were happy.

Michael: Then it was off to RonMac, for a relaxing family afternoon. I caught this rainbow on the wall of our room when we walked in -- a good sign for sure!

And then, like that, it was all over. Time to go back to the hospital.

Phyllis: There were tears. I was so scared that he would be upset going back in, and he was. But then I reminded him that it was an excellent practice at being out of the hospital!

Michael: Things were rough on our end too, so we had frozen yogurt to make us feel better:

Phyllis: Sam took a bath, he ate an orange, and things settled back into normal. I asked him what he thought about going out and he said it felt "weird." Also, he noticed how heavy the bag of fluids was in the backpack and how tiring it was (so I said maybe it was better that we didn't go to the zoo!). We also talked about the idea of "managing expectations" and that seemed to work for him!

He was clearly worn out from the day's activities but he continues to do well. He's still itching on his hands and feet, so hopefully they will figure out how to level his immune suppressants to make that go away....

He might be counting down the minutes, but it's nice to have a little lift-off every once in a while. This outing was just what we all needed to help everyone see the light at the end of this part of the tunnel. There is still a long road ahead of us, and we know that we're not there yet....but it's nice to be together as a family, to share ordinary moments and just hang out together.

Michael: How's the wifi over at the hospital, Phyl?

Phyllis: Terrible tonight but oh are things over at RonMac?

Michael: Everyone's asleep! Guess we should call this one a day?

Phyllis: Good plan, honey...good night!

Tuesday, September 24, 2013

Sam, Sunshine & Family BMT +28

Sam just keeps improving as the days go by. We enjoyed a great day with Nurse M keeping us company and even granting Sam's greatest wish: shrinking his IV pole down once again...
Uncle Harry, Bubbe, Zayde, Mommy & David all came to visit today. Sam didn't know what to do with himself. At this point he believes his parents are Clark Kent and Superman and can never be seen in the same place at the same time (clearly Phyllis is Superman/woman considering all she manages to accomplish in a single 16 hour period of being awake). It isn't often you have both of us in Sam's room without all the other kidlets bouncing around us and making us nervous (ok, really only Solly makes us nervous. We are waiting for him to pull the wrong cord or press the wrong button).  Sammy even asked for AND ATE spaghetti and sauce! You could have knocked us all over with a feather.
We tried to take this picture from afar so as not to disturb the EATING.
Sam was really himself today. He took his meds without a hitch. He sees the goal in front of him, so close he can touch it. He wants out. (Really he wants out by Friday because Cloudy with a Chance of Meatballs 2 is coming out.) He walked a mile with pluck and verve. He keeps me hopping as I have to distract him with stories of my sordid youth while he takes his pills. Really I mostly go through old comedy routines of Eddie Murphy, Bill Cosby and Jerry Seinfeld (minus Eddie's colorful vocabulary of course). Usually I just jump to the punchlines because Sam is getting that good at taking pills that I only have time for 2-3 sentences before he is done. 

David brought dinner and Sam's best medicine in himself. The two sat head to head talking, playing on the iPad, eating and watching some tv. They talked games, books, movies and television. Family is really the best medicine we can ever offer. Sammy eats up the time and the company as if it were his best meal of the day. It is a blessing to watch them together. 

The horizon always looks so close and yet so far away. Yet twice a day the colors are the most magnificent ever shown to our human eyes. I can see our outpost on the horizon, so close I can almost touch it. It looks beautiful and yet full of daily challenges and expectations. We will meet them all head on with courage and strength. Sammy can see the horizon. He is running towards it. He can taste it, smell it, feel it in his heart and in his lungs. He can sense how close he is to shedding these four walls (ok it isn't exactly a square room, and has six walls if we were all to count, and yet I digress). He has his goals and knows the expectations of his medical team. He is up to the challenges if it means living across the street, eventually living in his own room once again. One day at a time. One beautiful day, with our beautiful boy, and our beautiful kids, and our beautiful family at a time. We will all cross that finish line together. 

Monday, September 23, 2013

Moving Targets - BMT +27

Today was decidedly better. 

It didn't start out that way. Poor itchy boy declared that it was going to be a "terrible day" and he was going to spend it all in bed, sans clothing, itching. 

Dear Steroids, 
You make my kiddo crazy!
Go away.


Then finally, finally....a few anti-itch meds later...."hey, this day isn't actually so bad, mom!"

And all was well again. 
(His steroid dose is actually being weaned now that it has helped with the rash.)

Yesterday he ate four items:
A 100-calorie package of Oreo crisps
A 1oz bag of pirate booty
A small yogurt smoothie (3oz)
A pear

Today the nutritionist and I laid into him for some goals. And he agreed to eat all four of those items again today -- TWICE. And even better, when asked about his eating by another staff member, he ticked them off on his fingers and told her the plan -- like he owned it. Awesome. 

I wouldn't call it a high-calorie diet but it is so much better than nothing. 

My favorite part of the day was when he agreed to play video games in the common area. It's nice to see that he was willing to be out of his room and back to his usual social self again. 

So the plan is to revisit the immune suppressant drugs now that this GVHD seems under control. Daily they pull a "level" of the amount of the drug in his system so they can maintain a certain amount. That is, of course, the trick with moving from iv to oral. Now that he's back on iv his level was perfect. But it will probably be a tad too high tomorrow. The doctor and nurse practitioner each gave their prediction for his number and of course, I listened to their predictions and then chose 18 for my totally-uneducated guess. We will see tomorrow.... (10 is goal, by the way.) We need some consistent levels before we move back to oral and out the's a moving target, to be sure. 

So we keep plugging away at it with plans on the horizon....thanks for all your constant love and support. We couldn't do it without all of you. 

I type this from RonMac, where I came after a dinner time swap with Michael. I thought you'd all like to see tonight's music therapy session:

You will notice that Solly's idea of music therapy is playdough!!

Tomorrow is another day....

Sunday, September 22, 2013

Forward and Back - BMT +26

Unscratchable Itch by Shel Silverstein

There is a spot that you can’t scratch
Right between your shoulder blades,
Like an egg that just won’t hatch
Here you set and there it stays.
Turn and squirm and try to reach it,
Twist your neck and bend your back,
Hear your elbows creak and creak,
Stretch your fingers, now you bet it’s
Going to reach – no that won’t get it-
Hold your breath and stretch and pray,
Only just an inch away,
Worse than a sunbeam you can’t catch
Is that one spot that
You can’t scratch.

Poor Sam has spent most of the night and day itching. The rash grew and grew.
The doctors decided that it probably IS graft-vs-host and they put him back on a drip of the immune-suppressant to get his level back to one that would keep this at bay.

The rash has subsided considerably but the itching - OY! The itching!
He's gotten creative and he's using a marker to itch down his back.
He's got a really strong topical ointment and some steroids via IV.
This too should pass....soon, I hope.

Of course, now we are on the lookout for the GVH to spread, which it hopefully won't.

It doesn't seem like this skin irritation should cause such consternation but I have definitely been on edge for the last day and a half. It seemed like he was making such awesome progress. This feels like a step backwards, even though it's not exactly backwards. It's more of a twist in the road, a hairpin curve where you have to go back a little in order to go forward...

The pole is back to its former size. This walk did not distract him from itching.
Trying to distract by coloring

Saturday, September 21, 2013

Itchy - BMT +25

Sam had a great day on Friday, working on pill-swallowing and even "poked his nose" outside (okay, he took that literally thanks to Karen and didn't actually set foot outside!)

Check out the Incredible Shrinking Pole....
Actually, since I took this picture, the TPN has gone away as well. So it's just a bag of regular fluids hanging in place of that yellow stuff, which looks gross but is actually TPN, Total Patient Nutrition, which is a true lifeline around here.

He's had a small itchy rash around his neck, which they actually thought might be attributed to the aftereffects of the chemotherapy drug Thiotepa. That's the drug that required the scads of baths that Sam took way back at the beginning of this party. Even though we're a few weeks out, that is when those side effects can sometimes manifest. But unfortunately, the rashes spread around him a bit and then he spiked a small fever. What could this be? (It is less likely now that it's a Thiotepa rash.)

Well, one of the things that has departed from Sam's pole (at about 8pm on Friday night) is a drip of cyclosporine, an immune-suppressant that is, in essence, an anti-rejection drug. Starting last night, he switched to an oral form of this drug, known as Tacro or Prograf. Once he spiked the fever, they started to think that this might be a mild beginning of Graft vs. Host Disease (GVHD), and they started him on a steroid.

But the truth is, they just don't know YET. They will hopefully know more tomorrow, when we can test his Tacro level and see how it compares to where it's supposed to be. It's a bit of an art, making sure that his levels are appropriate to keep the GVHD from rearing its ugly head.


If you'll recall, one day I answered a bunch of questions about BMT and here's what I said back then:
By taking Sam to transplant with a significant leukemia load, we are actually hoping for graft-vs-host disease -- we want the graft (the new marrow) and the host (Sam) to have a little fight. We hope that the secondary front of this war will be graft-vs-leukemia -- we want the graft (new marrow) to fight the leukemia (ninja) hard. The slight mismatch (antigen A) between Sam and SuperMensch will encourage this even further.
So...maybe this is good. And maybe it isn't. And maybe it is the right time for it and maybe it isn't. And maybe it really isn't GVHD at all. And maybe it is.

And now you can see why I'm feeling just a little bit crazy today.
Because I hate not knowing the answers.

Sam is feeling just okay. He is a little uncomfortable (itchy rash!) and just feeling a little under the weather (fever). I'm hoping that the steroids they put him on will not only help with the itching and the rash (and the fever) but also give his appetite a little bump. Gotta look on the bright side, right? And even with the yucky feeling, he still managed to play chess and monopoly and learn a new page of Hebrew and even take a little walk around the unit...that's Sam for you!

In case you're interested, here is a picture of Sam's med schedule for today and tomorrow...
Yes, he ate a 1 oz. bag of Pirate Booty! Woohoo!
And that doesn't even count the IV meds that he's still on! We spend a lot of our time taking pills. I've discovered that the best way for Sam to take his meds is standing up, in the bathroom. It separates the pill-taking from the puke bucket and standing somehow makes it easier. The other key element? Distraction. Just as Sam picks up his water cup and pill, I start to tell a story. I'm currently telling some of my favorite stories in installments. I only have to talk from the time he picks up the water until he's swallowed the pill and maybe just a few more moments as he makes sure it stays down. So I try to stop telling the story right then so I have more of it to tell in the next installment! Even Sam's nurse got into it today, she wanted to hear the next bit of the story. Sam has already asked for some of his favorites, and luckily when Uncle Harry is here tomorrow, he's armed with The Ruby Story (thanks, Jerry!) that he will tell for the morning meds. (Let me clarify -- Sam has the pill-swallowing thing down pat. It's the pill-not-throwing-up that is the problem. Nausea is still a big issue and so we've separated out all the pills  and clustered them around the anti-nausea meds (also pills!) hoping to keep them in his tummy. It's working!)

So here's hoping for a few answers tomorrow and maybe a perkier day for Sam.

Thursday, September 19, 2013

Clicking -- BMT +23

Today was one of those great hospital days where it all just clicks...

A surprise visit from Officer Dale was a big hit with Sam!
Dale convinced Sam that he was the UNO World Champion and Sam was quite pleased, then, that he was able to beat him. Dale promised to show Sam his certificate (for being World Champion) next time he sees him....Sam was appropriately skeptical!

Then the fun got even bigger when another surprise (to Sam) visitor came, Rabbi Steve!
He had to join in the fun, and of course he had some silliness with the two bald heads....
Today was a big day, since Sam is now officially weaned off his morphine drip, and it was even removed from his ever-shrinking IV pole. You'll remember that he went outside for the first time about a week was quite an excursion because hospital rules require a nurse to go with Sam as long as he has the morphine drip. Today -- no drip, no nurse. It's not that we don't like our nurses, we love them! But there was something delightful about the freedom to come and go....and so we took Rabbi Steve to the Healing Garden in order to shake the lulav. Today was the first day of Sukkot, the Festival of Booths, and although we don't have a sukkah, we went outside to perform the mitzvah of lulav. Last night, Sam and I had a discussion about the Four Species, and so I was proud that he could answer all the questions that Rabbi Steve asked him about the willow, myrtle, palm and etrog! (And since I only had pictures to show him, it's nice when the learning clicks with the real thing!)
P.S. Also no mask! Sam's ANC is over 2000 and the hospital was pretty quiet when we went downstairs.
We are continuing to work on changing meds over to oral (only one IV med left, aside from the anti-rejection drugs which run on a continual drip) and eating. I'm trying all the best sneaky mom tricks I can find, but he's quite convinced that the food needs to taste good. I wish I could convince him that it doesn't have to taste good...but...have you met Sam!? But anyway, he has been drinking Carnation Instant Breakfast (not a lot, but some) and today he ate French Fries from McDonald's!
He still feels a little nauseous at times (and he's on scheduled anti-nausea meds to try and combat that) and he was definitely tired out after our walk downstairs today. But he's learning how to tell me when he feels sick, how to work around it to take meds and eat, and how to make it all come together...I think that pill-taking finally clicked for him today, he didn't throw up any of the pills and he was able to swallow them all on schedule. Yay! (I've figured out that if I tell him a random family story while he's taking the pills, it helps to distract him. I keep trying to come up with things that won't make him laugh because I wouldn't want that to mess up the pill-taking!)

Sam was supposed to start Hebrew School this year, and I know that he was a little jealous of his siblings' learning Hebrew at their school this year. So I promised that once we got into the hospital I would teach him Hebrew....truthfully, until today he didn't really feel up to much. And conveniently today, the Hebrew book that I've been waiting for arrived. Judi, our wonderful director of education, had given it to me when David was in first grade so that I could teach him the alef-bet, and now it's out of print. She did a lot of legwork to find a copy of it, and we are so grateful to the folks at Bloch Publishing who dug it out and sent it to her! Sam was so excited to begin, and he was so proud that he learned four letters and three vowels this evening!
It just clicked.

We're still here in the hospital but it's now starting to feel like he's ready to be out in the real world. Things are coming together, he's feeling well and has a lot more energy. It's only 23 days after his whole world changed, so I shouldn't expect too much of him, right?

Slow and day at a time....

Tuesday, September 17, 2013

CrowdSourcing - BMT +21

So things are just....going.
Sam is feeling pretty well most of the time.
Still fighting nausea.
Still worrying about pill-taking and eating.
Still doing laps and mouthwashes and all the other hospital fun.

And that's about it.

So I turned to my trusty online community and asked what they wanted to read about on today's blog, and so here are some of those answers....(aka Crowd-Sourcing)

1. Sukkot -- I'm sad to say that we aren't building our sukkah this year, obviously. But that doesn't mean that we won't have the joy of celebrating one of my favorite holidays. Of course, the kids will have the opportunity to dwell in the sukkah at their respective schools, and with some hope, perhaps Sam will too. In some ways, living in the hospital and at Ronald McDonald House is the ultimate in "temporary dwellings" and so perhaps we're constantly in a sukkah? I'm sure there's a nice sermon in this somewhere.

2. The Other Three -- Yes, the other three are doing quite well. I have now been to two back-to-school nights and learned all about first and sixth grades. There were mealworms on Yael's desk and this morning I got an update that one of them had shed its skin. I know that the big kids see this as a good place to be, and to them it is "just school," which is great. I've spent some time with both of them talking about how it is okay to miss our schools at home and it is also okay to enjoy the school they are in -- it's not disloyal to either and it's alright to like both. So I think that they do. They alternate between talking about new friends and also asking to go back and see old friends. Solly is also loving school. He was excited to show off his new shoes to his friends today. I think his favorite part of school might be the other kids his own size.

3. Laundry and Cooking -- Yes, we do both of these things over at the Ronald McDonald House, and it's so nice to have a space to do both. I wish that I could cook things that Sam would eat, but I know that time will come. I have to say that one perk of RonMac is that there are, just like in a dorm, a row of four washing machines. At home I only have one, so this is actually a little bit nice to be able to do multiple loads all at the same time. (And as I say all the time -- I'd give this perk up in a heartbeat.) We tend not to cook very much, though, since there are dinners almost every night. Sometimes the food isn't exactly to our liking but then we just heat something up in the microwave. But our accommodations are quite nice in that regard. Maybe I'll bake a batch of cookies or banana bread soon....

4. Educational ideologies -- (I am just going down the Facebook list, here, people.) Actually, I'm still happy that I'm able to work on the class on Educational Ideologies that I'm taking online. It's sometimes hard to focus on such academic material while sitting in the hospital or late at night at RonMac but it's actually nice to have something completely different to think about. Currently, I'm learning about the Sudbury Valley School, if you're interested.

5. What Sam Thinks -- I asked him what I should write tonight and he told me to take the night off. I told him that I would go and write "Sam says to take the night off" and he said, "but then you ARE blogging by writing that!" He agreed that today was mostly boring and that he played monopoly with Uncle Harry and did school and took a nap and that was about it.

6. Book and Movie Recommendations -- I know that Sam and Michael have watched some movies together but there haven't been many on my nights, for whatever reason. We have finished all the books in the Dragon in My Sock Drawer series (the next one comes out next week!) and we're currently reading George's Marvelous Medicine by Roald Dahl (thanks, Julie!). He's reading a different book with Michael. Sam likes to keep things orderly that way. Also, we watch a lot of SpongeBob. My favorite.

7. Pumpkins -- Did you know that our hometown of Highwood has held the title of Most Lit Jack O'Lanterns In One Place (or something like that)? Our annual Pumpkin Fest is very cool. Last year, there was a Pumpkin Run, and it benefited the Leukemia Research Foundation. This year, the Pumpkin Run will benefit St. Baldricks Foundation, which is one of the largest contributors to research for pediatric cancers. There's also going to be a St Baldricks shaving event!

Okay, I think I covered all the bases that you guys suggested....and that's what's going on up here on 5East today! Any other questions?

Monday, September 16, 2013

Steps - BMT +20

Every big project has its forward steps and backward steps.
We're definitely moving forward. (His numbers are great!)
Sam is doing really well. He's happy and moving around, he's very much back to his old self again.
His stomach? Not quite caught up yet.
And so that continues to be his challenge -- transitioning to oral medications (from IV) and eating.

Our doctors are over-the-moon happy with his progress.
The fact that his tummy hasn't caught up to the rest of him....well, that's par for the course they tell us.

So we have to let him set the pace.
We might have to slow down and let him feel ready. Or we have a few other plans that might help...and there are a lot of really smart people on the case.

 (Because even though I might think that since he is a pill-swallowing-food-consuming-rockstar, this should all be easy....but I know that there's more going on here than we think. Our doctors keep reminding us that his body has been through a really violent, destructive process. Even though he seems pretty well -- we have to respect the recent history....we just have to help Sam remember how to feel good, and remind him that he can do it.)

So in the meantime we read and we walk and we play Wii and we take naps and we watch SpongeBob and the teacher visits and hospital life just....goes on.

Uncle Harry took a turn reading to let Mom rest her voice.

Sunday, September 15, 2013

Engrafted! BMT +19

Three days of an ANC over 500 means that the SuperMarrow has moved in, completed the floor re-finishing, hung the curtains and unpacked the china. It has applied for its new driver's license and forwarded all the mail. As of today, Sam is considered to have "engrafted."


In honor of this milestone, Sam ate a Ritz cracker. And tried four kinds of cereal. (Froot loops kinda won. If by "won"
you understand that he ate more than 1 and less than 10 pieces of cereal.) And rejected a bunch of other foods. Oh well. We will keep trying. I'm proud of him every time he tries -- and even when he spits it out, I can't blame him. 

He's working on switching meds from IV to oral and weaning off some others. This is the primary challenge, along with figuring out if the nausea is actually caused by some of the medicines...

Sam's library stash was replenished by the Book Fairy aka Karen...and she got a hug for her trouble!

He walked 10 laps and played some hangman with David. 
(He did not eat that cheese toast. Sigh...)

On this lazy Sunday, Sammy's body continued to do its hard's a shot of the kind of quiet pole-lit night we're always hoping for...

What does this all mean for Sam? Well, it means he is much closer to discharge from the hospital but nowhere near the end of his journey. Still, Engraftment is a huge milestone and today is a day for rejoicing! Thanks for being with us along the way...

Saturday, September 14, 2013

L'Chayim! To Life! - BMT +18

The number 18 in Hebrew is equivalent to the word Chai (8th letter +10th letter of the Hebrew alphabet) meaning "life." How fitting that BMT +18 should fall on Yom Kippur, a day where we pray to be written in the Book of Life. What a blessed Shabbat and Yom Kippur. Spending the entire day with one of my kids just relaxing, talking, reading, playing and watching a film. It was one of the most relaxing Yom Kippur days I've ever spent. While I missed seeing all my friends and family I didn't miss the stress that goes along with preparing for the High Holy Days and living through them. Today Sam and I were allowed to just be, my job to tend to his every need and help his continual healing and development. His job to rest, nibble at foods as he reintegrates them into his life, play, talk, listen to me read him a book, and rest. It felt good to let go and allow time to simply flow around us.

At dinner time yesterday the hospital was almost quieter than I've ever seen it on a weekend. Almost deserted. It was a warm and quiet Shabbat where we simply watched a movie and then went to bed. A quiet night led into a quiet morning where we woke up slowly and then watched Now You See Me, Now You Don't a second time in order for me to explain everything Sam had missed the first time. It was still just as good the second time.

Sam confirmed that while the Marinol medicine made him hungry, and curbed his nausea, he hates the side effects. Point taken. Back to the drawing board. But when the munchies hit he did nibble strawberries, circle cheese and a few bites of hamburger. It was impressive just to have him asking for food let alone tasting it.

Sam's numbers are amazing. His ANC is 1036 and his platelets are holding steady at 116 (150 is normal). He's still battling bouts of nausea, but the doctors think that may just be withdrawal side effects as they wean him off of the morphine. 

In the good moments he's himself, inquisitive, fun, playful, funny and cheerful. He does his best to get through the pills and the time. Each day is just another day closer to being healthy enough to check out of this house of healing.

Small things that make staying with Sam a joy: We never fight about how much tooth paste I put on his tooth brush or the fact that I put it on (that would be Solly). He never asks me repeatedly to cover him (not even if he needs my help when he gets up to go to the bathroom in the middle of the night). (also Solly) And good night means goodnight, not the time to ask the thousands of questions he waited until bedtime to ask. (That is Yael.) Small things, I know, but something that brings a peaceful calm to the end of a day after doing our best to live fully through another 18 hours staring at the same four walls. To say Sam is resilient doesn't even begin to cover it.

In life I love to read t-shirts. They tell me where people are from or where they've been on vacation. They tell me what music the wearer listens to or what movies they love. They tell me what sports teams a person favors or even where they went to college. Tonight on the floor someone was wearing a University of Connecticut t-shirt. I asked my usual question, "Did you go to U-Conn or just wear the shirt?" And was surprised when the dad responded "I went there. Graduated in '92." I grew up in Connecticut. He was a year younger than me and grew up in New Jersey, near Rutgers. He was one day after diagnosis. It took doctors three weeks, and many doctors to figure out that his three year old daughter had ALL leukemia. He was glad just to have a diagnosis and be somewhere where people actually knew what was wrong with his daughter and how to begin helping her get well. I told him we were a year out from diagnosis and BMT +18. I told him the team here was the best and would take excellent care of his daughter. We shook hands, wished each other well and returned to our rooms.

I've walked over a year in my own shoes and yet still can't imagine what it is like to walk in his shoes. I count my blessings every day and know it can always be worse because I see how many of these rooms are filled on a daily basis, and see how many people I don't know on this floor compared to the people I do know here. It has been challenging enough caring for Sam and chaperoning him through his personal hell to this bright spot of BMT +18. Every good day is a day to be blessed. Our good and blessed moments completely outnumber all the bad moments. We could say we are lucky, but truly we know that saying we are blessed is way more accurate. Since I don't tend to meet too many dads on this floor I hope meeting someone whose child is doing well and talked about the excellent doctors gave him some peace of mind that everything might turn out ok and confidence that he and his family were finally in the right place they needed to be. It certainly made me hug Sam tighter after I sang him to bed knowing how far we'd come to get even to this day, this day of life and blessings, this day of being sealed in the book of life, this day of joy and comfort in each other's company, this day of peace.

May you all be sealed in the book of life and may you experience a year of sweetness filled with the blessings of being surrounded with love, family and friends.

Thursday, September 12, 2013

Busy - BMT +16

Today was one of those busy days that flew by!

First a little Wii...
Followed by finally breaking into some amazing art gifts (thanks, Debbie!) and an incredible long visit with the art therapist making prints. 

Then we had a special visit from Emma and her mom. Emma is a fellow patient with leukemia and she's spent a lot of her treatment time coming up with awesome gifts and ways to help other patients. What an amazing young lady she is. We keep running into each other all over town, not just at the hospital! Funny! Today she brought Sam a sweet gift basket with a special item picked out just for him. 
You can follow Emma's journey on her Facebook page and even help contribute to some of her great projects. Tell her we sent you...

And then while they were here we noticed a little drip....drip...drip from the ceiling. Yep. A small leak. Drip. Drip. Drip. 

After 26 days in room 585, guess what? Yes. A leak in the ceiling requires us to move. Wouldn't want any mold or whatever to get in. 

It was quite an undertaking with all of our decor (and today's art prints I had actually JUST finished hanging up!!!) and all of our stuff but with the help of Uncle Harry, Bubbie, Zeyde and a few of the hospital staff....whew. We did it. Pretty much a total replica of the previous room.

I said to the nurses as we removed wall decorations and rehung them in the new room: "This should be the worst thing that happens to us." Right?????

(In case you are interested, our room no longer faces east, but north. We overlook the emergency department parking lot and I think we'll be able to see the helicopters when they come in.)

Sam continues to have blood pressure issues so he's learning a lot about how the blood pressure machines work and a that. He even took his nurse's blood pressure today!

Sam tried four different foods today. He didn't actually EAT any but at least he tasted! Hooray! It's a first step. Yay!! (Well, does it count if you eat ONE goldfish cracker? They're so small! How about 2/3 of a pretzel? I don't know....)

So where are we, medically? Working on keeping his blood pressure down. That's a key element. There are a few meds that need to be weaned and some others that need to be transitioned from IV to oral. It's a process that we're happy to be undertaking, even though I'm sure it will have its bumps. But with a continued upswing in his white blood cells (1.4) and a lot of happy doctors counting all those little tiny growing cells (ANC of 210)....we're hopeful that our sojourn in this new room will be far shorter than the one we had in the leaky room.

So I tucked my boy in tonight and he snuggled down into his bed....knowing that the world is full of prayers for his healing, knowing that he is loved and blessed....thank you for continuing to be with us, to support us, to help us be with our family through all of these. We know that we are truly blessed, each and every moment.

A few housekeeping notes:

-- Our town's biggest festival is the Highwood Pumpkin Festival. This year, the Pumpkin Run is on October 19th, and it's benefiting the St. Baldrick's Foundation, one of the largest funders of research for childhood cancer. If you'd like to run, you can go here to register. If you'd like to donate to the St. Baldrick's Foundation in honor of Sam for this event, you can go here.

-- If you're local to Milwaukee or Chicago and you'd like to support the Milwaukee Jewish Day School, where David and Yael are in school, you can buy candy through me. (It's quite yummy, actually, and we're feeling so blessed to have this safe place for our children.) See this form for details and then email me your order at (or Facebook inbox me).

-- Tomorrow night begins Yom Kippur, so you might not hear from us for a day or two -- don't panic! (It's also Shabbat, so you might be accustomed to this regular break in our blogging.) I do want to point out that Saturday, Yom Kippur, is Day +18. I feel a sense of the holy as I consider that on this day we will pray for inscription in the Book of Life....and it will be the day numbered "chai" for Sam's transplant. As we enter into this moment, for all of us, we wish for you a g'mar chatima tova, may you be inscribed and sealed for good, for life, for health, and for blessing.