Goals - BMT +15

Dr. M had a conversation with Sam today about goals.

Goals for feeling better.
Goals for eating.
Goals for ***going home***

Yep. Those words were said.

Not today. Not tomorrow. Not even this week.

But it's on the horizon.
Way way way off where we can just make it out in the distance....a tiny speck on the horizon....

White Blood Count: 1.2
Hemoglobin 11.6 (in all fairness, he got a unit of blood yesterday to support the recovery)
Platelets 116
ANC of 168
(Just think, in previous rounds of chemo, these would have been phenomenal-going-home numbers. BMT is a whole new ballgame.)

Being silly with the pulse-oxygen monitor

Some things in our way....well, his blood pressure continues to be a little bit of a problem. The combination of steroids and anti-rejection drugs can do that to a body. It's a peril of medicine, right? Each one helps and hurts, and the doctors have to weigh out the benefits of the helping with the hindrance of the hurting...(so far, the fungal problem has not come to fruition. Whew!)

Also, eating. As I've said before, Sam complains that everything tastes bad. (We appreciate all the input from those of you who have experienced similar things...) Now it has become a place where Sam can exert some control. I'm sincerely hopeful that as we start to wean him off of some of the other medicines, like for pain and nausea and fever-reduction, he will actually feel hungry and compelled to taste and try different foods. The doctors are not concerned about this, they say it's completely normal. Of course, as a mom, I'm desperate to feed my kid! But I listen to the doctors on this one, since I know they know what they're talking about. It also helps that he's on IV nutrition, so we're not worried for his health in that way. Still, it's an important part of his recovery. We are currently compiling lists of foods to taste and making charts....

Medical stuff out of the way, we're just working on keeping Sam happy and active. There was a lot of Wii played today with Dad, and a special delivery from Adam of some cool Nerf guns and a bow and arrow set. It provided quite a bit of entertainment today! (Thank you!)

This was after David taped the target to his own chest and let Sam shoot at him! Thank goodness it's Nerf.

Sam also learned a cool math magic trick from a set sent by a friend (thanks, Jill!), and he used it to bewilder and amaze his nurse....

...and then his brother.

And then, in one of my favorite moments of the day, amidst a massive Nerf battle between the brothers, in walks Dr M, of the shofar fame yesterday. Today he joined in the battle....(on Sam's team, of course...oh, and they're not aiming at me, the photographer, but at David.)

There was a whole kerfluffle when David sent a (Nerf) dart right at the doc and he retaliated with a water syringe...and then the Bears/Packers business got involved because David was using a Bears pillow as his shield....and then it really got out of hand....

Um, yeah. That happened.
(His platelets are GREAT. Oh, and Dr M. didn't actually shoot...whew!)

Tonight's Epic Nerf Battle confirmed for me One Important Thing:
We spent a lot of time debating whether or not it was a good idea to keep the whole family together, to uproot our kids from their schools and their friends, and to bring them here to Wisconsin. We agonized over the decision....and tonight, as I watched the boys play and laugh and scream with delight...as I watched Sam, full of energy and excitement, and David, totally at ease with the whole situation.... I was able to say this (with tears in my eyes both from laughter and well...all of it):

Best. Decision. Ever.

And that's where we are today.

Body and Soul - BMT +14

So you know how we usually write posts about how crazy low Sam's numbers are and how amazing he feels? He's usually the kid with the low ANC running around leaving us all bewildered. 

So it seems that things are a bit topsy-turvy over here in BMT-land. Sam has incredible numbers. White blood cells and platelets abound. He's a crazy rockstar and his docs are thrilled. (WBC .7, platelets of 132 -- I know, right?!)

He feels like a big ol' crummy mess. Still running fevers, still nauseous, still just not Sam. 

And our doctors get it too. 

Let's go back a step. 

Many of you have asked me about the fungus stuff. For the record, Sam does not have a visible fungal infection. But with a continued period of neutropenia, he is always at risk for one. Any unexplained fever has the potential to be a fungal infection (amongst other things) and so our doctors act accordingly. As you know, Sam is allergic to one med and has a pretty strong reaction (not considered an allergy) to the second. So there's a third. Last night they administered that drug, and its side effect was terribly scary hallucinations. So for now -- he remains only on the original prophylactic anti-fungal drug (which we like more and more!) that he's been on for months. If he shows a sign of a true fungal infection, they will make the choice of which drug to give him. Aside from the bad drug options for Sam, a fungal infection would just be BAD. So if you're looking for a specific focus for your prayers -- this would be a good spot. 

Sam's negative reaction to last night's drug made us somewhat desperate for a good day. But he spiked a fever this morning and the decision was made to administer steroids again. It's still not clear what is causing this but it is possibly Graft vs Host Disease (which we want a little bit) or, as Dr M says, it could still just be "cells talking to each other."

I wish they would just simmer down and get to making their new home nice and cozy. Hush, little cells....it's gonna be alright. 

Ok, so you've got all that?

Even in the midst of it all, we had a long talk with our docs today about how wonderfully Sam is doing. So in the spirit of "aim high" I used their happiness as an opening to ask to have his PICC line removed. It hasn't been used much and it really annoys him to have the line in his arm. The dressing change yesterday was particularly traumatic. And guess what? No more PICC! Part of that decision was medical -- any open line is always a potential source for an infection to get in. But part of it was emotional. We are trying so hard to keep Sam happy and focused. Hopefully this will help him feel like he's making the great progress that the docs see. 

And then this happened: 

Three rabbis and a doctor walk into a room. No joke....

Here are two guys who are dedicated to raising Sam's spirits. Body and soul, baby. They had a shofar-down over Sam's bed and got him to smile, giggle, and even throw down a few taunts. Yes, Dr M actually blew the shofar in Sam's room. Yes, Michael and I nearly fell over laughing. And yes, it raised everyone's spirits. 

So where are we?

In the roller coaster of this, we are somewhere between high and low. Trying to put it all together to make a healthy, happy Sam. Day by day, hour by hour, minute by minute....

Skele-Gro - BMT +13

Remember in the second Harry Potter, when Professor Lockhart accidentally removes Harry's arm bone instead of repairing it? And then Madam Pomfrey gives him a medicine called Skele-Gro and she says, "growing bones is a nasty business. You're in for a rough night, Potter."

Yeah.

So apparently growing bone marrow isn't something that works overnight...
And it's a nasty business.

Sam is doing a-MAY-zing at his engraftment. 
He has a WBC (white blood cell count) of .5 and his platelets and hemoglobin WENT UP which is unheard of. ("Unprecedented" and "ahead of the game" were the words the doctor used.) Go cells go!

But he still has some other miscellaneous and somewhat mysterious ailments, in particular the high fevers and a repeated pain in his side. So they threw some steroids at it and we're holding onto a wait-and-see-attitude. He felt much better today but still pretty lousy, so most of the day was spent in bed, sleeping and resting. His temp stayed down (yay steroids!) and kept his blood pressure and heart rate at mostly normal levels too. 

A visit from the hospital teacher actually perked him up! (See, this is the Cancerland version of a back-to-school picture.) He really likes her, and I know that he actually enjoys learning even though, like most kids, he's not a huge fan of homework.

So today was a way better day than yesterday but it still isn't up to Sam's usual standard of well-feeling. Today the doctor said to me, "not only will we take it one day at a time, we might even take today 6 hours at a time." I'm totally good with that. I don't mind reassessments and course corrections and audible calls (how 'bout those mixed metaphors?) as long as I know that the doctors are up to their usual stellar standards. I continue to appreciate that no matter how miserable my little boy is, he is doing really well by the measure of the day and with all that's going on. He might not be cracking jokes or even so many smiles, but he's still a little bit snarky and he is still Sam....and for that we are truly grateful. 

Twisty Ride - BMT +12

It wasn't the best day.
Sam's continued fevers bought him a CT scan this morning. His extended neutropenia leaves him open to all sorts of infections, but in particular, they are worried about fungal infections in the lungs and/or sinus cavities. Remember, he's been on an anti-fungal medicine every day since he was released from the hospital in June, and he's basically been neutropenic (low counts) since then.

The scans came back mostly normal, with  just one tiny spot that may or may not be a problem...and the continued fevers with no other obvious cause suggested that some broader anti-fungal coverage might be in order.

Well, it turns out that Sam is allergic to the anti-fungal drug they gave him. He reacted with some tightness of breath and discomfort -- so they quickly stopped the drug, which helped him right away.

If the first drug was Pepsi, we moved onto Coca-Cola. But apparently, Sam doesn't like Coke any more than Pepsi, since he responded pretty badly to that one too. (This time, there were rigors (shaking) and a super-high fever, as well as a lot of vomiting, even though there's nothing in his stomach.)

So...I think we're going to look for a Plan B in terms of anti-fungal coverage. We'll stick with the original medicine, and tomorrow I'm sure there will be a discussion of what to do next. Luckily, they always seem to have a plan C...D...E...

Scary? Doesn't even begin to describe it. 
Before all of this, the doctor told me to "buckle my seatbelt."
Have I mentioned that I hate roller coasters? I get carsick with the least twisty-turny road.
We're good at looking at the upside of every day, and its been rare to have days like this one for Sam, where he's really quite sick and uncomfortable all day. I'm trying...today was hard, no question. He's still pretty miserable and it is hard to watch him like this. Even SpongeBob couldn't perk him up or the chance to kick my butt in Monopoly.

On the upside, his white blood count went up to .3 -- so that's something to cheer about. So even though he feels like a garbage truck ran over him, his cells are doing their thing...

Here's hoping that Monday morning brings a perkier Sam.

Movement - BMT +11

Sam has always been, um, how shall I say it, a bit picky about what he will eat in the hospital.
(He isn't, as a general rule, that picky of an eater outside of Cancerland.)

It wasn't so much that his tastebuds were really affected before, but more that certain foods just appealed to him and others did not. Okay. This I can deal with.

On Friday afternoon, I said, "I'm going to have an apple."
And Sam said, "me too."

And then I almost fell over. Because he hasn't expressed any interest in food in over 10 days. So I cut up an apple. Then I presented it to him and I photographed the experience, since I was so excited:

Scrrrrreeeeccch. I came crashing back to earth as that one bite was all he took.
"It doesn't taste right," he said.

I checked. It was perfectly fine.
I'm sad to say that it is Sam's tastebuds that seem to be impacted. (Darn radiation)
Now we have to figure out just what it is that will taste good. He still isn't really hungry, he hasn't expressed interest in eating. I ask all the time. (Did you think I wouldn't?) But Dr. M has also told me (a few times, he knows my Jewish-mother-tendencies toward feeding) that until Sam wants to, we shouldn't force the issue. He says that Sam's body will know when it's ready. Since he's usually right about these kind of things, I'm going to have to trust him. (Oh, and P.S. I ate the apple.)

Otherwise, it was a pretty quiet Shabbat. It was gray and rainy and Sam did exactly what works best on a gray and rainy day -- he napped.

Okay, he probably slept all day because he was running a fever from Friday night through most of Saturday....we're hopeful that it is not a sign of infection, but rather an early sign of engraftment. What does that mean? Engraftment is the magical process of the donor cells finding their way into the empty spaces in Sam's marrow and moving themselves in. (Remember how I said they were picking out paint colors? Some cells like fancy paint styles which take longer to procure, and some prefer to have the hardwood floors refinished, which takes longer than simple paint and carpet. We don't mind if the cells are particular, hopefully it means that they're just forward-thinking never-want-to-remodel-again type cells. Or maybe they got a good contractor and things are moving along quickly?!) Anyway, this can take a while, and frankly, I'm not sure that the doctors even know exactly how the cells find their way to the right spots. The first sign of engraftment is a very gradual and tiny rise in White Blood Cell (WBC) counts.

Until yesterday his WBC counts were >.1 -- that little "less than" symbol was super important yesterday....BY ITS ABSENCE. Yes, he had a WBC of .1 on Friday, and it was .1 again this morning. But a repeat blood test this afternoon indicated .2!

So small.
Tiny, really.
So fragile and delicate.
And so fraught with potential danger.

But it's there. It's something.
It's a move forward. 

Now, it's totally possible that these numbers could bounce around a lot. They look for trends, for something they can really hang their doctor coats on. But I'm good today with just this tiny bit.

Once his fever broke on Saturday afternoon, Sam was pretty chipper and he took a bath, watched some television, and even took a walk (9 laps!) around the floor.
Not bad for a kid with a WBC of .2, right!?  

Yontif on the HOT Unit - BMT +9

Yontif is yiddush for Yom Tov, a good day, a holiday, in this case Rosh Hashanah. And it was a good day for the most part. Sam had many great moments where he felt fine and was his rambunctious self.
I thought it would be a quiet Rosh Hashanah with just Sam and I, but was pleasantly surprised when I was able to watch a friend lead services on the west coast after Sam went to bed last night and while he napped during lunch time. I caught the majority of both services and both sermons (Thanks Rabbi Cohen & Temple Beth Sholom for making your live streaming available to everyone!). Oh, how I love modern technology. Phyllis, the kids, Bubbe, Zeyde and Grandma were all in Chicago to celebrate at Am Shalom with our Chicago family. Phyllis was grateful to be on the bima with her other family. Our whole family was embraced by the multitudes. Sometimes being seen is enough to let everyone know that with all their love and support we are still doing well. It is important to be able to go home, even for a moment, to be reminded of what you are trying to accomplish, trying to get back to. 

Sam woke ready for fun and amusement.

(I couldn't resist a shot of this funny "ready for the day" morning face!)

Exercising was just as funny, but a serious necessity when confined to a small room and a single floor. We get our ground game on when we can and sometimes just exercise in bed when that is what he's able to do. 

After exercise we talked some, brought out the old drawing pad and began dreaming big. For the last few days we've been story boarding and designing video games we'd like to create.  We have several in the works, some worth exploring down the road when all this is behind us. Sam is excited, but doesn't understand my programming limitations since he of course thinks that I can do anything. We decided today to create a game where Alien Horses ride rockets to race in space. Sam had fun drawing the images of what he imagined the aliens looked like and what he wanted the rockets to look like. But so that no one got confused he made sure to write above them "Not actual size."

Sam is about where he should be post transplant. He is sleepy, a little nauseous once in a while when the meds don't quite overlap and the pain in his throat and tongue is slowly subsiding. The doctors and a dermatologist checked a slight rash, but found it was just a heat rash possible caused by the heat pad we used to comfort his neck the other night. Needless to say we are not using the heat pad to sleep with tonight. He is a combination of happy go lucky and grumpy, but still mostly happy. We played a wicked game of Monopoly: Here and Now edition on the iPad. Before the nausea returned Sam pulled himself out of a cash slump and rallied to bankrupt me in the end.

Sam slept through his nausea through the later part of the afternoon. This allowed me to complete Sam's homework assignment for me. For several days now Sam has asked if I've learned how to use GameSalad to create a prototype for our video game yet. I've been a little busy. A week ago Eric Winter sent us some images from his new ABC book, All for Beating Cancer. Using the app GameSalad, I insert Eric's dinosaur as the "Boss" in one of the game templates to show Sam that we were making progress in creating our own game app.  He was pretty excited to see that it worked. I mean who wouldn't be excited to see a huge "Boss" Dinosaur flying at you shooting missiles while dodging said missiles and defeating said "Boss" Dinosaur. Very basic, but very exciting to see. We can't wait to show the rest of the world Eric's new book being published with all proceeds going to fund cancer research. Eric has brightened our world since the very first drawing he sent us of Superman Sam and Mega Turtle battling cancer a year ago. We will have to ask for some illustrations of crazy frogs next since in the end Sam wants a game about  flying frogs. You've heard of test dummies? This was our test dinosaur.

And so it goes. A new year to fill with as much sweetness as we can amidst the bittersweet of not knowing what the day to day will bring. We count our blessings more than we curse our challenges. What choice do we have? We celebrate the new year with family and friends, bathing in their blessings and well wishes and sending love and blessings back. Apples and honey for Rosh Hashanah, to remind of us always of the sweetness all our year should be filled with. May we all be written for a sweet and healthy new year. 

Covenant - BMT +8

When we found out in April that Sam would be receiving a bone marrow transplant (and we didn't know how long it would take to get to this point!), we started to talk about ways to mark the occasion. Prayers, of course, at the moment of transfusion. But what else? What would sufficiently mark this enormous change in his body, this new beginning, this "fresh start" for his cells?

Well, we reasoned, if "day 0" was his new day-of-rebirth, and if he were "like a newborn," wouldn't people want to know his name? And, of course, a baby doesn't usually get his or her name until the 8th* day, the day of the covenant. (***don't worry -- we won't do any of that OTHER 8th day stuff!)

There is a Jewish custom to alter someone's name when they are in a life-threatening medical situation. The superstitious explanation is that this is meant to "fool" the Angel of Death, who presumably has a name of a person to "find." But there are so many other reasons to change one's name! I know of people who changed their names when they got to rabbinical or cantorial school, people who changed them for Aliyah to Israel, people who wanted their names to symbolize something different about themselves. Many people change their surname when they get married or to symbolize a partnership. In the Torah, God changes Avram's name to Avraham and Sarai's name to Sarah. Yaakov's name is changed to Yisrael. There is a teaching in the Gemara that changing one's name makes one an entirely different person.

Okay, so going back to this life-threatening medical situation name-changing affair. It's very typical to add a Hebrew name, rather than change the name entirely, and it's often the custom to choose the name Chayim, meaning life. This was nice, and good. Except that our decision to change Sam's name wasn't made in an emergency situation, and we had some time to consider. And while he was and is in a life-threatening situation, we thought that there was just a little more to it. Our decision was in some ways a meeting of the health and symbolism-of-change ideas. So we gave SAM the option of a few names, carefully chosen for their meanings (and including Chayim, by the way), and he chose....

Uzziel
which means "God is my strength"

I couldn't love more that he chose a name filled with power and strength, that yes, I know, he liked the way it sounded, but I also know that he likes the idea of being strong and tough. And is he ever....

Shmuel Asher Uzziel ben haRav Michael Aharon v'haRav Pesah Esther

(he might have the honor of one of the longest Hebrew names EVER!)

So as we start this new year, this Rosh HaShanah of 5774, this birthday of the world, so too do we renew the covenant that we made for Sam at his birth, asking for him to be brought to a life filled with Torah, with good deeds, and with loving companions.

L'shana tova u'metukah.
A good and sweet year, a year of HEALTH and blessing.
From all of us to all of you....

*If you're being technical, you would note that a Jewish baby born on a Tuesday (like Sam's cells and, by coincidence, Sam himself), the brit milah would take place on the following Tuesday, the 8th day. But since the doctors already have a counting system in place, we decided that "day +8" made much more sense to be "the 8th day." Please, don't think too hard about it.

One final P.S. I know that many of you may not read this until after Rosh HaShanah and that you may have said Mi Sheberach for him using his "original" name and that now you're fretting. But please don't. Please know that we believe in the intention of prayer far more than the details and semantics. I might be superstitious but I know darn well that the Angel of Death and the Holy One are neither fooled nor even interested in what we call Sam....I know how much more this all means to us, the living and the prayerful. Prayers for Sam in any and all means are welcome and appreciated.