Friday, September 28, 2012

999* is so nice

What we've been up to....

Sam took his own blood pressure when the home health nurse came to visit.
FOUR kids at my breakfast table!?
A little hula-hooping...
Back to school!

Yesterday, Sam said, "I think I miss some people at the hospital and I can't wait to go back."
Me: "Really?"
Sam: "Um, NO!" {laughs hysterically}

Today Sam said, "I think I eat a lot more here than at the hospital."

He does homework and chores and does friendly battle with his sibs.
Last night they were chasing each other around the house.

A slice of normal life.
Before we go back into Cancerland.
I wish I could throw away our tickets.

*999 is Sam's ANC as of today. How nice is that? Biopsy on Monday....wishing you a Shabbat and weekend full of peace and blessing!

Sunday, September 23, 2012

According to Plan!?

It's quite remarkable when things go according to plan.
So remarkable that it's nearly unheard of in Cancerland.

Saturday was Day 25.
In Round 2, Sam went home on Day 25.
I didn't exactly make a plan, but I imagined that perhaps day 25 was the magic day.

Who knew!?

(Well, our nurse practitioner seemed quite certain since she did all the prep work with me on Friday and said she was pretty sure it would be Saturday or Sunday.)

Sam's counts jumped by 100 overnight! From an ANC of 64 on Friday morning to 160 on Saturday morning. After a little discussion/negotiation/conversation with the resident (who was questionable about our home-going status) and the attending physician (who was certain that we were going home - so glad SHE was in charge) and then a little medicine-planning and organizing and packing and prepping...

We went home.

Just like that.
 It was exhausting.
He slept the whole way home!

And now, here we are...ready for a nice long time together before our return to the hospital for Round 4...Round LAST.

Things seem kinda....normal.
A little baking (that's what we Sommer people like to do)...
If I had a plan, it would look like this:
Monday - back to school for Picture Day!
Yom Kippur....I'm not sure yet what Sam will do.
Build our Sukkah.
Dwell in our Sukkah, perhaps a day or two early .
Eat a lot of macaroni and cheese, bagels, and whatever home-flavored food tastes best.
Monday - Bone Marrow Biopsy and Lumbar Puncture with many precautions taken to avoid spinal headache (more on that when it happens)
Friday, October 5 - Readmission for Round LAST. Round FINAL. Round Get-Us-To-Remission-Forever.

But I don't have a plan.

(Round 4 will probably not be 25 days. First of all, wouldn't that be weird? Second of all, if you'll recall, I don't like to read ahead. But I've heard that sometimes that round is longer. So I'm not getting my hopes up. Really.)

But still....
you gotta believe.

Things will be hopefully quiet around here for a little bit. And that's the way I like it.

Thank you for all that you've done for us so far and all that you continue to do.
We are unbelievably blessed.

Thursday, September 20, 2012

Free With Purchase!

Like a party favor or toy at the bottom of the cereal box, you get a lot of free! extras! with leukemia.

Like fusobacterium necrophorum.

Try saying that 10 times fast.

I have a nickname for it but this is a family-friendly blog.
Use your imagination or name it whatever you'd like.

It's just one of those bacteria that live in your mouth.
And mine.

And when your immunity is low...and you have a few loose causes infection.

So now we have a name for the bug that is infiltrating my Sam.
And there are antibiotics that will stomp it out.

But seriously? This is one time I would have been happy to read "Sorry, you did not win. Please try again" on my soda cap.

Otherwise, it was a pretty mild day. Way better than yesterday.

Sam discovered that Thinking Putty works to create "magical illusions" like this one:
Plus we had a surprise visit to x-ray, since, surprise! You need a chest x-ray when you have our new little friend, fusobacterium necrophorum. (Have you tried saying it 10 times fast yet? Here's another chance!)

So we got a little ride down to x-ray, a short wait, and then a quick picture of Sam's insides. (I won't comment on the fact that it was the same x-ray room we'd been in back on June 9th...but the thought did cross my mind.)

I won't make you wait for three hours to get the results. (If you want, feel free to step away from your computer for 3 hours and then come back to read the next sentence to get the full experience.)

Luckily, the x-ray is clear and so the course of treatment is just antibiotics.
Whew. I'd hate for our party favor to come with its own party favor.

So...we wait. Do the ANC dance for us, ok? Today was 60. We know it goes up and down...but we're hoping to go home SOON.

Until then?
We're just embracing the motto on this t-shirt, which Sam got from the Jessie Rees Foundation - Never Ever Give Up (NEGU). It looks like they do some pretty cool things to help kids with cancers and Sam was pretty into his NEGU shirt today when everyone asked him about it.
One day at a time here in room E582.
Stay tuned....

Wednesday, September 19, 2012

Ups and Grumps

Oh what a day of ups and downs it was.

Things started very well. Sam has an ANC of 36!
(This, of course, made me burst into tears and then spend a few minutes teaching our nurse practitioner about gematria. Because, you know, that's what I do.)

Remember how I said we were on two different antibiotics (vancomycin and cefepime)? They added a third today (tobramax), because one of the bacterial cultures came back positive (which, while "normal in Cancerland," is not actually positive. I mean, honestly, don't you think they could rename some of these things. Just like the Pain Team should be renamed the Anti-Pain Team. But I digress...). So now we're on three antibiotics.

Stay with me.

A little later, one was dropped, since he'd been without a fever for 24 hours. Which is good, since that one takes an hour to run (vancomycin, if you're keeping score). So, we were down to two.

Until just a little bit later, like, um, 2 minutes after his "final" dose of vanco finished, guess what? Another fever! So....welcome back, vanco!

Then we got the cultures back. Turns out it is another bacteria? So we added flagyl. If you're keeping score at home, now we're at four antibiotics.

Then finally, the lab came to its more final conclusion (I say more final because I frankly have no idea what tomorrow will bring) so now we're back to two. But I've totally lost track.

Haven't you?

(I know this sounds like total medical incompetence, but it's not. They get a preliminary lab result which leads them to one family of antibiotics and as they get more clear results - which take time - they narrow it down. Better to be safe than sorry, which is totally true. These bacterial infections are actually the whole reason we are here in the hospital awaiting counts recovery instead of relaxing at home.)

But none of that medicine switching is what made the Grumps part of the day for the kiddo. Sam just wasn't himself. Maybe it was the fevers, maybe it was the fact that it's been 22 days, maybe he missed the family just a little bit extra today...whatever it was, Sam had a lot of ups and grumps. Some of the moments were great, but he was really touchy. I definitely walked on eggshells today, not sure how he was going to react to things. Normal things. Things we do all the time. He just wasn't very happy...oy.
Only a 6 year old boy would think that toilet candy is funny....
FaceTime made Sam feel better today
Art is good therapy! There was a lot of art today.
Today was one of those days where I just didn't know what to expect. If you'll recall, Sam hates his IV pole. He refuses to go out while "hooked up" and he will barely even walk to the bathroom when connected. Except today. "Let's go!" he said. And then I said, "sure, when you're done being hooked up." And he got mad at me. "No, now!" he said.


Turns out, he figured out how to "ride" his pole like a scooter. (Then he got mad at me when I tried to take a picture. He actually made me delete the picture I took. Which was better than this one....)

And then there were moments when he just laid in bed and stewed about how mad he was to be in the hospital. And perhaps he didn't feel well. Which is to be expected, right?
Over and over...I said to myself...."This too shall pass."

Sooner rather than later would be preferable, though.
I'm just sayin'.

Tuesday, September 18, 2012

Day 21 - Wait. Wait. Wait.

We are simply waiting.

Sam's is still neutropenic, which means that his ANC is basically zero. He has almost no immune system at the moment, yet he is still pretty energetic and

Except over Rosh HaShanah he spiked a fever, which, as you'll recall, is "normal" here in Cancerland. It has a plan - they say it every morning on rounds: "if he spikes a fever, we will culture him [doctor speak for draw blood and see what grows from it] and give him cefapine and vancomycin [doctor speak for serious antibiotics]." So...the plan was put into place. Sam actually "grew" a bacteria in his culture so they added a third antibiotic. (The nurse-practitioner actually told me she was surprised he had a bacterial infection since he is so "well-appearing.") It's not quite like putting a kid on a z-pack for strep throat, though. Now they check his blood for the antibiotics to make sure that they're working and then tweak the dose. Fun stuff.

Gives us something to do, I guess.

Since we're mostly just waiting.

Have I mentioned how much waiting we're doing? Waiting for the counts to rise. Any day now? Counts? Ya hear me? We're waiting....feel free to rise. Tomorrow some poor lab tech is going to manually comb through Sam's blood (I would imagine a microscope is involved and probably not an actual comb) to look for blasts and neutrophils and whatever else he or she is trying to find. Hopefully the search will not be in vain and tomorrow is the day!

Until then....a lot of elevator-riding and catch-throw-bounce and homework-cajoling and movie-watching and fruit-by-the-foot-eating and antibiotic-administering.

Flipping through the movie choices at the Family Resource Center
Things are so neatly labelled in Cancerland. Isn't that nice and organized?
Isn't fruit by the foot attractive?
Homework. He isn't quite sure how much fun this is.
Playing catch. In the hall. With a fever. Like the ball? It came in the mail. By itself. Who knew!?
Did you know that September is Childhood Cancer Awareness Month? I do now.
But it does seem odd that here on the cancer unit we are not always acknowledging Cancer Awareness. I mean, honestly. Do you expect me to believe that one. single. month. is going to go by in my life forever in which I am not totally aware of childhood cancer? Yeah. I didn't think so. You too, huh? Yep. I knew it.

But that doesn't stop them from decorating. I guess a good decorating scheme is hard to pass up. And yellow is a nice color. ("celebrating" just doesn't seem to be quite the right word for it. But they made such nice signs.)
Even Sam looks good in yellow:
I hear stories every day that make me feel lucky.
Lucky that so far....waiting is our biggest annoyance.
Let's keep it that way.
Thanks for the love and the prayers.

Friday, September 14, 2012

A Sweet New Year

Thanks for being the shoulders on which we stand.
Thanks for lifting us up and sharing our burden.
Thanks for laughing and crying with us. Sometimes both at the same time.
Thanks for the mail and the packages and the pictures.
Thanks for the fundraising and the organizing and the meal-making.
Thanks for the prayers.
Thanks for the pure love.
We feel it.

From our family to yours, wishing you a sweet, happy, HEALTHY year of blessing.
Here's hoping that 5773 has way less hospital stays and way more mustache-wearing.
L'shana tova - Happy New Year!
May we go from strength to strength.

P.S. Things might be quiet around the blog for the next few days....between Shabbat & Rosh panicking, k? Catch ya in 5773!

Thursday, September 13, 2012

Keeping 'Em on Their Toes

In our general attempt to keep people on their toes, Sam requested hummus from the food service.

"We don't have it. Wait, I think we have it in the dining room."

A while later, hummus arrived.

In the morning, we called and asked again. I was sure that they would say, "We don't have it." I was prepared. But actually, hummus was again procured from the food service.

And so brunch....

Today was Sam's photo shoot with Flashes of Hope. This is a really cool organization that brings professional photographers into hospitals (and probably other places) to take pictures of kids with all their beauty. So far, we had missed all the other photo shoots, but we were here and available for this one. They set up a whole photo studio (and makeup too...Sam rejected that idea), and Sam came complete with props - his nerf swords, cape, and of course, mustache. Yep, that's right, people. We've recorded that mustache for posterity. The photographers loved him. He was such a (kosher) ham - he jumped right in and started posing, and he didn't even wait for them to tell him to do things, he tried to run the whole show! (Afterwards, they told me that he was the most spirited kid of the day...that's my Sammy.) These are just my shots from my phone, of course, the volunteer photographer had a much fancier camera. We will get prints and a CD in a few weeks....

*Note (I haven't done this much, but maybe I should!) - anyone who wants a cool project - it would be so neat to provide the Flashes of Hope Milwaukee Chapter with a whole box full of either washable or give-away-able photo props like mustaches, hats, feather boas, capes, chalkboards, what else? If you're interested in taking on a project like this, let me know and I will put you in touch with the right people in the hospital. It would be so cool if we could set them up and keep it stocked. I'm sure someone out there wants a good project, right?

And in the spirit of keeping everyone on their toes, a little sword-fighting on the way back to the HOT unit after the photos:
Medical stuff:
Sam is just rolling along with no immunity. He is eating better, though (6 Fruit by the Foot packages!?) I'm sure there will be a report of some small rising counts tomorrow, right? Today he had a low-energy day (I know, it doesn't look like it from these pictures!) and his hemoglobin was low. Near the end of the day, he started having trouble taking deep breaths. Nothing too major, a little like a small asthma attack. But he doesn't have asthma. That, combined with low hemoglobin, a little crabbiness, a slightly elevated heart rate, and a few higher-than-normal-but-not-quite-fever temperatures....all added up to a blood transfusion. Which is, of course, "normal."

And my little Bears fan didn't care so much about the game, he wanted to watch Sponge Bob. Who could blame the kid?

Wednesday, September 12, 2012

It's The Little Things

Day's the little things that make us happy.

Little thing #1:
Coffee creamer in the "nutrition room" AKA coffee-getting-place. We have been out of coffee creamer for days and days. Even the nurses are annoyed. But I know better than to go out and buy some. That is when it magically shows up. So I waited it out and was rewarded this morning. Yay! The vanilla goes first....then we reluctantly use the hazelnut, which is good but not as good....and then we settle back into the ordinary half-and-half until more coffee creamer shows up. It's a vicious that annoys coffee drinkers enough that we have been known to check out other floors' coffee-getting-places to see if they have been restocked sooner than we have.

Little ok, Big Thing #2:
A visit from Dad. It happens to, ahem, be busy season in rabbi-land. So when dad came up for a visit today, it was a special treat for Sam. Dad, it must be told, spent the whole last week figuring out as many tricks and secrets of DragonVale as he could so that he could share them with Sam. "I'm so impressed, Dad!" is what he said. And he meant it. I was impressed too.
Little Thing #3:
Dad's turn to be impressed as Sam read in Spanish. Woo hoo!
Little Thing #4: Simply wonderful weather and fresh air in the Healing Garden. Sam found a few kids to play with and he had a great time running around in our evening walk. Oh thank goodness for fresh air.
Counts are still at the very bottom. Not rising yet.
Waiting....waiting....waiting....waiting....tapping foot impatiently.

Tuesday, September 11, 2012

It's Always Something

Day 14. Halfway through? Who knows. We just keep on truckin'....

I decided that it was a good idea to take Sam to the hospital cafeteria for lunch. I thought that maybe a combination of many choices in front of him and an eating-atmosphere would encourage a good solid meal. Plus, we can eat outside in the lovely little patio. I took Sam into the cafeteria, and showed him all the choices available....and here's what he selected:

that diet coke you can see is NOT for Sam. Guess who drank that!?
Seriously? All the french fries you could possibly want and Sam picked a pickle, cheese, and fruit. Oy. He is so not taking advantage of this. He will regret these silly choices when he is old and watching his cholesterol. "Oy, when I was six, I should have eaten all the french fries I could have!"


After lunch, we had a super-exciting video chat session with Sam's music class. They shared a sweet song that they had learned about Sam's monkey and took turns singing it, playing the xylophone, and making the monkey dance. Sam loved it.

 Things were relatively quiet the rest of the day. There was some homework and drawing. One of the nurses suggested that Sam draw a picture of himself sword-fighting against cancer.

(I cannot get this picture to rotate! Sorry.)
While we were sitting out in the play area drawing, a lady walked by with her musical instruments. Yes! It was the music therapist! We were not on her schedule (why not!?) but we convinced her to add us in. She didn't arrive in our room until almost 9pm, so we had a really short session, but Sam loved it. We are now on her schedule for next Tuesday.
Please, Sam, do NOT take up percussion.
Right before the music therapist came, our nurse found a very small pinprick-size hole in one of Sam's central line lumens. This necessitated a call to the Central Line Team, who said it needed to be repaired immediately, and someone would be there by 10pm. (We are relatively strict about bedtime but once we heard this, we knew we'd have to stay up late.) It's always something, right?

At about 9:30, she came to repair Sam's line, and that was a very interesting experience! I was a little nervous that it would involve some kind of surgical procedure (that is how the line was put in initially) but the small break was close to the end, so they could just cut it off and put on a new end. Everything related to the line has to be sterile, so that was a little nerve-wracking. Luckily, they seem to know what they are doing!
Sam was a trooper but by the end he just wanted to go to bed. Me too! (That's why tonight's update is so late!) Whew. It was certainly an adventure that we are hoping to never repeat. I asked if we caused it, and she said no, sometimes it just happens, and it probably (hopefully) won't happen ever again.

As you know, Sam has become a huge fan of the game Draw Something. It is a great tool for learning to spell! Our friends at Zynga heard about Sam and sent him a Draw Something t-shirt, which he was so excited to wear tonight to bed. (I must admit, Zeyde and I were a little jealous of this little bit of swag, since we play too!) Thanks, Zynga! Here's my little rockstar:

Boring is good. We just want boring. Here's hoping for boring days ahead....

Monday, September 10, 2012

#10on10 Day 13 in Room E582

I did this last month, and so here we are again, on the 10th of the month, with 10 pictures. Okay, I'll admit. There are 11. Bear with me, math isn't always my best subject.

8:30 am - morning hand-washing (and I remembered that it was the 10th so we could do this silly project!)
 9:30am Miss Theresa, the hospital teacher, was here. She and Sam worked on math and other fun things using her fun school iPad apps.
10:30am A little jaunt around the hospital
11:30am Sam's kindergarten teacher, Ms. E, came to visit! (I totally messed up the time but she still found us!) We showed her the Healing Garden and shared some books outside along with some sword-fighting.

12:30pm Opening mail and checking out the Spiderman stickers
1:30pm Doing schoolwork with Ms. E - that was awesome for me - he was such a rockstar student (and she was a rockstar teacher with him today)! (Also, he totally won't read in Spanish for me but he did for her. Isn't it annoying how kids will hold out on their parents!?)
2:30pm Bubbie and Zeyde came to visit
3:30pm A mouth-check. Chemo can cause mouth-sores so they check pretty regularly. I think he has a molar coming in, which is causing him a little annoyance. He was also eating a scone, and he wouldn't stop chewing long enough for her to check him out! It's hard to say "stop eating" when we are spending so much energy trying to get him to eat!
4:30pm Since they heard there were a few rabbis hanging around the hospital, the idea was floated for a daily campus minyan (the Medical College of Wisconsin and Froedert Hospital share the same campus as Children's Hospital). Since then, Michael and I have been taking turns (when we are here) leading a brief service at 4:30pm, Monday-Thursday, in the hospital chapel. I have asked Sam to join me almost every time but today was the first day that he came with me! And would you know one came to minyan today. So Sam and I "did synagogue" (his words) - he was the rabbi and I was, well, the kid. It was hilarious to watch him run through a bunch of the songs we usually sing at Sunday School (I wish I had video of him saying things like, "good job, everyone! now repeat after me!") and he put a prayerbook on every seat, while saying to me, "It's fun to be the rabbi, mom!" So this is where you get 2 pictures instead of just one. He was fascinated by the different religious items in the chapel, like the kneeler and baptismal font. I also pointed out where our prayerbooks were kept and the Muslim prayer rugs. There's a very large Bible open on a table, and I don't think he had ever seen such a big book. At bedtime he told me that this was his favorite part of the day. {heart melt}
Name that tune? Anyone?
"it's fun to be a rabbi!"
5:30pm Finally a little downtime with DragonVale.

Actually, that's 10 hours of our day, but of course, there was a little more. Huge burst of energy at about 7pm and then finally he is down for the night. I've seen the labs, I tell you that his numbers are very low. One of the nurses told me that he is the most energetic kid she's ever seen on this floor! I am so thrilled with all of his energy and non-stop-go-go-go....but man, I'm exhausted! He wasn't very interested in exploring during our first round of chemo, he was confined to his room for the second round, and now here we are, third round - he is totally comfortable in the hospital, confident in his routine, and so far...handling all the side effects without too much trouble. It's only Day 13 and so we have quite a few left to go. May they all have this day's energy and spirit.

Thank you for your continued support. Sam and I talk about it all the time - he still marvels that there are people who don't know him who are praying for his healing. It means so much to us.