Holding Breath

I saw a few people this weekend who strongly suggested that I should write a blog post.
Because I haven't lately.

And I spent a lot of time over Shabbat thinking about why I haven't wanted to write a post.

I think it's because I'm simply holding my breath.

I realized that I felt that if I wrote down how well Sam is doing and how well he seems to be feeling and just how....ordinary...our lives are feeling -- that it might all change in a blink.

It still can. Trust me, I know how easily it can all turn in a moment.

But I'll say it:
Sam has been doing well.

His chemotherapy appointment was moved from Tuesday to Wednesday, which was a minor change due to the supply of one of the chemo drugs. Remember, Sam is on a slightly unusual protocol now, so this isn't a drug that they stock normally. So Wednesday it was. His labs on Wednesday suggested that a transfusion of both whole blood and platelets would be warranted before the weekend, so we decided to come back on Thursday to get that over with. Two long days in clinic and we were done for the week! Sam is always begging for a visit to the zoo, and I rewarded his blood day with five minutes visiting the penguins. (The zoo is only about 3 minutes from the hospital, and as soon as we walked into the zoo, the skies opened up in a pouring rain. So he had to be content with literally five minutes and the penguins!)

We're watching for fevers, we're watching for bleeding or bruising, we're watching for anything that might be just off....and it hasn't materialized. But of course, now that I've written all of this -- who knows what is going to happen? Am I superstitious enough to believe that I'm able to jinx his health just by writing it down? Probably not. Should I tie a red string around his wrist? Probably.

It is almost Sunday, and we have to get to Tuesday. On Tuesday we will find out, as the doctors say, that the "truth is in the marrow." Whether or not the chemo has worked in any way, whether his remission status has changed, whether there is any kind of significant change in his leukemia....these will be decided on Tuesday after his bone marrow biopsy. I'm expecting (hoping for?) a short day in clinic, since he's scheduled for a pretty early appointment. We'll still be holding our breath.

We're still hanging out at Hotel Maison de Casa House. Trying to keep everyone occupied and happy, while paying attention to the unique demands of a low ANC and the need to offer regular opportunities for anti-nausea meds and keep the anti-fungal meds as scheduled, plus clinic visits, blood draws, snacks....you get the idea. It's actually a little tricky to remind the other kids that yes, something is in fact wrong with Sam. Because it all seems so "normal." Sure, he's a little crabbier than usual, and sure, we hover over him a little more than we ever did. For the most part? It's hard to tell the difference between Sam and any other kid at the park. He's even growing back some hair so instead of Baldy, we might call him Fuzzy.

At the Before-the-4th of July Parade -- we stayed far from the madding crowds, though.

Sam and I negotiated the mask for the Butterfly Room -- it just felt too enclosed...

In truth, I feel pretty helpless. There's nothing we can do to avoid a fever or infection (other than keeping him out of large crowds, but most infection risk comes from within him), there's nothing I can do to encourage the chemo to work better. There's nothing we can do to know the answer and there's no way we can plan beyond Tuesday. In fact, I keep declaring that there's a black hole in the calendar after July 2nd. It just doesn't exist as far as I'm concerned. I know the world will keep on spinning, I know that we'll get up on July 3rd and drink coffee and read the newspaper and....yes. I know all of that. But in terms of planning? I can't. I simply can't see past the next step. (And of course, I'm always remembering that no matter how happy we'll be to see Sam into remission, what it means is that we then begin the very long road of bone marrow transplant...)

These lyrics spoke to me this week....perhaps because my standard answer when someone asks me "so how are you doing?" is "I just keep putting one foot in front of the other."

you do your work the best that you can
you put one foot in front of the other
life comes in waves and makes its demands
you hold on as well as you’re able
you've been here for a long long time
hope has a way of turning its face to you
just when you least expect it
you walk in a room
you look out a window
and something there leaves you breathless
you say to yourself
it's been a while since i felt this
but it feels like it might be hope
(Sara Groves-- yes, I know she wouldn't usually be in my orbit)



P.S. People have asked about the other kids. They are doing as well as can be expected. David is headed off for six weeks at OSRUI and he can't wait to go. I know that camp is so very good for his heart and soul. Yael is attending day camp at the JCC Rainbow Day Camp in Milwaukee. We feel so blessed to have this opportunity to send her to this camp that both I and my brother attended when we were kids! (Okay, I went to Camp JCC and Harry went to Rainbow Day Camp -- now they're merged!) She is loving the attention, the activity, and the structure (as well as the bus ride!). Solly is...Solly. He just likes to make sure that he gets his chocolate milk, his occasional visits with Dora the Explorer, and has his favorite stuffed monkey. Plus he likes to take stock of where every member of the family is and he would like to wear his pajamas all day.

Back to Bubble

There's really not much to report. The doctors continue to be pleased that Sam is having minimal side effects and...so far...no infections or fevers. I feel as though typing that is just asking for trouble, but it is so far the truth. We are scheduled for more chemo this week and a biopsy on July 2nd to see what's going on with the darn leukemia that really needs to find a new address...we just keep trucking along...

Long days of chemo last week led us to a short clinic visit on Friday and a lot of resting and playing for the last couple of days. On Saturday, Sam begged for a "special outing" and since the weather wasn't too sunny or hot, I agreed to a trip to the Milwaukee Zoo.

Yes, he wore his black socks and carried his security-bucket everywhere. Except when he was eating popcorn. Then guess who had the privilege of carrying it? (Thanks to the dose of Zofran he took before we left, he didn't need to make use of it!)

Sam informed me that I'm a good zoo companion. I am good at map-reading, I am interested in the animals, and I help him read the animal facts. Yes, this is the review that I received as we drove away from the zoo. I promised to put all of this on my resume.

We've played a lot of Sorry...He was FULL of energy tonight, which I hope means only good things.

Karen taught Sam to play Crazy 8s and I'm sure I should say thank you to her, but can you see this evil expression on his face? Yep. That's what it's like to play cards with a trash-talking seven-year-old.

Tomorrow the rest of the family returns from their sojourn to Green Lake and Sam (and I) can't wait to have everyone back together. I do believe that the proprietors of Hotel Maison de Casa House are bracing themselves...

Leaky Bubble

I like being in that bubble I talked about...but spending seven-and-a-half hours at the hospital on Tuesday led to some leaks in the bubble.

Sam was a trooper. And a trouper.

I actually looked up the meanings of these words because I couldn't decide which spelling was correct. And I decided that he was both.

The OED gives these definitions of the colloquial uses:
trooper: A brave or stalwart person.
trouper: A reliable, uncomplaining person; a staunch supporter or colleague.

MOM! Stop taking my picture!

He was brave and stalwart, and he didn't complain very much....in fact, he tried to convince them to do his lumbar puncture and bone marrow aspirate while he was AWAKE. I know this was due to a little bit of anxiety about the waking up from anesthesia. But he was totally serious and spoke to the nurse practitioner calmly and frankly, adorably. He was charming and friendly. He had a few moments afterwards, as the nausea kicked in, when he was...um...less charming. But we'll go with it.

But the real leaks in the bubble came with the bone marrow biopsy results.

It isn't bad but it isn't so good either.

He's still not in remission, and he's still not ready for transplant. So they're going to add one more kind of chemo into this cocktail (daunorubicin but in a format to protect his heart, for those keeping score at home) and then...keep trying.

It's not the news we were hoping for. But they continue to feel that we're on the right track.

So we continue in our outpatient bubble. We spent two very long days in clinic getting chemo and now there's a little chemo-respite until Tuesday. (Even though we have a clinic checkup on Friday.)

Thank you for your calls and emails and texts and messages and posts. They all mean so much to us, and help us to know that we are not alone....we keep moving forward, one foot in front of the other. Leaks and all....

Happy Bubble

I realized that there hasn't been an update in a while. That's because we are in a happy little bubble of not knowing what's next but knowing that Sam is happy and feeling well. Having his siblings and family around is frankly, the best medicine. 

He runs around outside and even though he definitely gets tired more quickly (and a little queasy when he runs around too much), he is having fun being "normal."

(Yes, that is a bug house. Sam loves bugs.)

And so we continue to wait. It's hard to think about how I'm going to balance the other kids' desire to go swimming with Sammy's inability to do so right now...today we were near the pool and it was a perfect day for swimming. But I made up excuses so Sam didn't feel too badly....

What's next? Biopsy and lumbar puncture on Tuesday, along with chemo. More chemo Wednesday. Then....well, it all depends on the results. 

Until then? Sam is putting notches in his figurative belt every time he can beat Zeyde at chess:

We will just keep enjoying the bubble....

Interpreting

The first time they sent us home from the hospital, last July, we were petrified. They were sending us home with this kid who had not seen the outside world in almost a month, with these central line lumens dangling from his chest, and with the knowledge that his immune system was fragile at best. We had instructions for how to flush his lines, and they armed us with the HOT unit phone number and a short list of Things To Watch For.

"Have fun!" they said cheerfully as they tried to push us out the door.

"Wait a minute!" I said.

I dragged one of the nurse practitioners into our room and I asked her a series of questions, with both Michael and I hanging on every answer:
Can he go out to eat? (yes)
Can he go to the park? (yes)
Can he go to the movies? (yes, if it's not a very busy first-day-the-movie-is-just-released kind of theater)
Can he ride his bike? (yes)
Can he go swimming? (no. I threw that one in even though I knew the answer.)
Can he go to visit camp? (yes)

We were relatively surprised by the answers, but we just took a lot of deep breaths and plunged in.

When they released Sam this time, I didn't run through the list. (We have done this before.) But I did mention something about staying home to one of the nurse practitioners and she said, "We don't want you to seclude yourselves at home. He can go out, just be careful."

Ah...."be careful." Never before have those words been so open to interpretation.

I knew bringing Sam home this weekend that his ANC was under 200. But frankly, I still don't know what it is. We know it's Low. He has, in essence, almost no immune system.

On Saturday, we went out.
To lunch.
To a park.
To the library.

I kept looking over my shoulder, nervously worried that we might run into one of our oncologists....who happen to live in the neighborhood. What would I say? Would they scold me? We washed our hands a lot. Maybe they would catch us in that act and forgive me.

And then today, we went to clinic for Sam's chemo and checkup. Dr K came in and said, "how's it going? I expected to see you around town!" So much for my worries about getting caught!

Updates from Hotel Maison de Casa House:

The proprietors have been lovely and accommodating. They both cook and clean up. Amazing!

 The menu is varied unless you're Sam. Then you get mac and cheese for as many meals as you want.

We might have even gone out for frozen yogurt.
I might have looked over my shoulder a few times....

I am now a skilled deliverer of IV medicine for Sam. This is the coolest thing. It has a little vacuum bubble inside, and once activated it pushes the medicine into Sam at the proper rate over the period of an hour. And he just walks around with it. He could put it in his pocket and go out for frozen yogurt. If one thought that was a good idea. (It's a little like nursing a baby. We haven't yet started doing it in public.) I guarantee you that when we go back in-patient Sam is going to request this method of medicine-giving in lieu of the big ol' pole. (It's not really an option.)

I swapped one grandchild for another and David accompanied Sam to his chemo and clinic visit today.

 Sam never fails to find a way to be silly with the mask or other medical implements.

Photo credit: Karen

And that's where we are. We have another visit to the clinic to check in on Friday and a bone marrow aspirate and biopsy scheduled for next Tuesday. There's nothing to do except wait...and wonder...and hope and pray that this new regimen is the right one...so in the meantime we'll try to enjoy the outdoors and the parks and the library and even some trips to eat out and....it's all okay.

One Year Later

I told the story at the beginning.

I always imagined that June 12th would be a painful, terrible day for us.
The day they told us that Sam has leukemia.

But today is a hard day too. Today is the day everything was set in motion.
June 9, 2012: the day we took Sam to the emergency room in Wisconsin for the MRI that would forever change our lives.

The day that the ER resident said, "I spoke to the oncologist on call."

I don't remember hearing much after the word "oncologist."

I do know that last night, when Sam and I had a very brief visit to the ER (all is fine, just a little over-worried mama checking out a low-grade fever and crabby Sammyness), we were put into the SAME ROOM we'd been in....I tried not to lose it.

We've come so far.
And yet we're nowhere and everywhere all at once.

A year has gone by, and Sam's body is still locked in a war with itself.
He is brave because we tell him that he is.
He is wise because we ask him questions that no one should have to ask a seven year old.
He is funny because we don't want him to see us cry so we try to make him laugh.

Our lives are not what they were. No matter where we go along this path, we are all forever scarred by the past year and the years to come. Michael and I, David, Solly, Yael and Sam...all our friends and family....we will never be the same.

We were supposed to be in Florida this week, watching sea turtles hatch and visiting the happiest place on earth.

Instead we're headed in for chemo and consults with doctors who have scary titles.

A year ago, Sam "graduated" kindergarten.
Who knew that his blood and bone marrow were already rebelling against him?
I search these pictures, looking for answers that aren't there.

Kindergarten graduation day

I took this picture below a year ago, wondering what it was like to have my kid's blood pressure taken...I have most definitely lost count of the thousands of times this cuff has been wrapped around his arm....and I don't know whether to laugh or cry about the fact that I see this picture and think about how this green cuff is now too small for him and I remind the ER staff to use the blue cuff (larger size) because it gets a better reading. Because that is what comes to mind and it is...real.

June 9, 2012

A year later we are stronger and wiser. We know what questions to ask (sometimes) and we know how to navigate the systems. But we are still worried and scared, we are still waiting and wondering.

But a year ago we never imagined the outpouring of love and support we would receive. We never imagined how our communities (real and virtual) would rally to support us through prayer and food and love and gifts and financial assistance. A year ago we never imagined that we would grow to love our nurses and doctors and consider them to be a part of our family. We never imagined that we would make friends with other parents with sick kids, that we would laugh and cry with them, and celebrate and mourn. We never imagined how the HOT unit would come to feel like a place of safety, how driving into the hospital brings us just as much comfort as fear. We never imagined how many good times would be interspersed with the bad ones. We never imagined how much knowledge we would acquire and how much we could hold onto and how much we could let go of. (We never imagined how many lasagnas we would eat and how much coffee we would drink.) We never imagined what how much our family could sacrifice and miss and yet gain and grow....

It's been a year of our lives. The journey is far from over.
But we're still here. And for each day, we continue to be grateful.

Hotel Maison de Casa House

Sam has a good time shooting water at the nurses and doctors with medical syringes. Isn't that what everyone does in the hospital? (Actually, Uncle Josh texted me to confirm that, in fact, I really let him do this. He was a little incredulous that MOM says okay. I am a little incredulous that I am the one who allows it! But the staff really don't seem to mind and it gets Sam running around...)

Yael and I arrived at the hospital to great fanfare! Turns out the fanfare wasn't for us, but for four members of the Milwaukee Brewers and Bernie Brewer, who were visiting patients and generally spreading good cheer around CHW.

This is Jeff Bianchi, my dad's favorite new Brewer. Luckily, my dad was in the room when Jeff came in, so my dad could actually talk baseball...how cool that these guys come and visit.

And then, like that....we were outta there.
That's right! Sam was discharged with strict orders to return for any uncertain medical events.

For many reasons, we have decided to stay at my parents' house, which is MUCH closer to the CHW Emergency Room than our own house. Also, I noticed that the highway is going to be closed from 11pm-5am for a few days. Detours in the middle of the night? No, thank you.

Busting outta here! (but waiting for the valet first)

When I was a kid, my dad would send me letters at camp that looked like newspapers. He'd write "columns" about all the goings-on at home. There was always a "Dining" section in which he'd detail the menu at Maison de Casa House...yes, the sense of humor is actually a hereditary thing, people.

So we've checked into Hotel Maison de Casa House. They have great coffee and the food is cooked to order, especially if you're a grandchild (I brought a spare along just to keep things interesting). And while there aren't nurses to check Sam's temperature at all hours of the night, I did bring my forehead thermometer along. Tomorrow the home-health nurse will arrive to teach me how to give IV anti-fungal drugs. As I said to the doctors, I'm always looking to learn new skills.

Sam is feeling well. That is good -- it makes me happy and it helps the whole thing feel a little less crazy! We're hoping for a nice quiet weekend with a return to the clinic on Tuesday for the next dose of chemo. Wishing you all a sweet and healthy weekend with a lovely Shabbat Shalom!