Saturday, June 29, 2013

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, 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.

Saturday, June 22, 2013

Back to Bubble

There's really not much to report. The doctors continue to be pleased that Sam is having minimal side effects 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...

Wednesday, June 19, 2013

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 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 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....

Sunday, June 16, 2013

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 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....

Tuesday, June 11, 2013


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 in the meantime we'll try to enjoy the outdoors and the parks and the library and even some trips to eat out's all okay.

Sunday, June 9, 2013

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.

Friday, June 7, 2013

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 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!

Wednesday, June 5, 2013

Ruling Out

Well, it all seems somewhat right that we're here in the hospital. Sam keeps spiking fevers (mostly at night) and so the doctors are glad to keep him on antifungal and antibiotic drugs.

In addition, this extended period of neutropenia (translation: long time with low counts) leads them to be concerned about the cause of these fevers. Since all of the cultures have come back negative, we are pretty sure it's not a blood infection. So today they did a CT scan to rule out....anything. I'm quite a fan of "ruling out" bad things, and the CT scan wasn't too stressful for Sam at all. The only really stressful part was waiting for the results, which, thankfully, were clean. (As I said to one of the doctors today, I'm quite glad that someone was able to "look inside" of him today.)
Can you see Sam's bright green Crocs?
Despite the fevers, Sam started the new chemo yesterday and continued today. He didn't have any immediate reactions, which is good, and aside from some nausea and other intestinal discomfort, he's doing alright.
We're hoping for a couple of fever-free nights (and days, of course) and perhaps we can consider doing a little outpatient time, probably closer to the hospital than to home. I must admit that there's a certain comfort in being in the hospital. Having someone monitoring Sam pretty much all the time makes me feel safe and secure that we would catch any problems quickly. Unlike kids who do most of their treatment outpatient, Sam has had an already-long period of neutropenia (low counts), which can create more possibility of danger. So while the treatment is usually done outpatient, the patient doesn't always start out as low as Sam did. This is all a very convoluted way of explaining that I don't know what's going to happen next. I do know that I plan to be comfortable with the decisions that we make with the doctors, and I do know that we plan to make those decisions together...and I so appreciate that they listen to and respect our concerns.

Aside from all of the medical stuff, Sam is doing well. Aside from some nausea, he's eating and drinking and moving. Not a ton of laps, but plenty of activity nevertheless. There's been a lot of large-scale art creations going on in our room, and we've watched quite a few movies. And of course, the yellow sea creature has been present in our lives.
Why yes, that IS a butterfly net that Bubbie thought Sam would enjoy. There weren't any butterflies to catch. But that didn't stop our hero!
Eating his mama's famous Chemo Mac and Cheese
Sammy and Sammie enjoying the Healing Garden today!
I know that many of you enjoyed our recommendation of Z is for Moose, and so here's another one. Today Sam got a package from David Biedrzycki, an artist and author. His son, Al, is a friend of our friend Tess! (I love all the connections in our world...) David has written and illustrated a number of books about bugs and dragons -- can you imagine how much fun Sam had with today's package?

(This package actually arrived today during Sam's chemo, when he was really crabby about having to be hooked up to not only his pole but also the pulse-ox machine for the whole time. Distraction welcomed!)

This was one of our favorites in the stack:
Thank you to David and Al (and Tess) and to everyone who has ever sent Sam a package or an email or a card or a note or whatever. It brings such light and joy into each day, and it gives us all such a life. Thank you thank you thank you.

Tuesday, June 4, 2013

Hope is Good and Real

Oh, where to begin...
I could start with Sam's brief stay at home. He went to school all day Friday. There was a lot of lovely family togetherness (and some not-so-lovely normal bickering...but you won't see pictures of that, just use your imagination).
Shabbat at's a good thing.
Kitchen table art with Grandma
Notice how we only go out to almost totally empty restaurants?

Movie night -- this was the 3rd of the Back to the Future movies
On Thursday, before the discharge, we got the news that the biopsy wasn't exactly what we'd hoped for. The doctors wanted to wait until Friday, when the genetic information about the leukemia would be available, before formulating the next steps of the plan. So we waited along with them, but we were glad to be discharged. Friday, Saturday, and Sunday each brought different phone conversations with the doctors. They were wonderful at answering the myriad of questions that I threw at them. I know that at the beginning I said not to read anything discovered through Google. But, similar to how I feel about Rabbi Google, I'm learning how to decipher Dr. Google and in particular, Oncologist Google. (I have learned how to use very specific search terms to find the studies that these treatment plans are based upon.) So I had a lot of questions. They are patient and honest with us. (I will put medical details at the end of this post for those of you who won't have your eyes glaze over.)

Sam feels and appears well. His energy level at home was good, a little lower than normal. And I'm sure you'll believe me when I tell you that for Sam, "a little lower than normal" just basically brings him to where the rest of us are!

On Sunday night at about 9:00pm, he spiked a fever of 101.5 at home. Michael and I took his temperature six times. Then I took my own temperature twice to make sure that the thermometer was working. It is hard to believe but this is the first time in nearly a year of treatment that Sam has spiked a fever and required an ER visit for it. I called the HOT Unit and they asked, well, ordered us to go to the ER. We arrived at the ER at 10:45pm and the decision was made that, although his ANC was 390, he should have IV antibiotics. So at about 4:00am, we were moved back upstairs to the HOT Unit, room E583 (sound familiar? we had just vacated it a few days earlier. There hadn't even been an interim tenant).

Through it all, Sam has been well-seeming. That is supremely helpful to our outlook. He doesn't LOOK or ACT sick. I keep pointing it out to the doctors, who tell me that his strength and energy are an asset to his healing, but of course, the whole lack-of-remission thing is just as frustrating and puzzling to them as it is to us.

There had been talk about doing Sam's next round of chemo in some kind of outpatient way. This scared us a little, since we haven't ever experienced outpatient chemo. And the late-night long drive to the ER solidified that fear and made it very real. It sounds weird to say this, but the admission on Sunday night made the decision easier; by being admitted, we didn't have to decide about the chemo's location. We are here for at least a bit. Once he stops having fevers (he had another one overnight Monday-Tuesday), then we can talk about going home.

It's a little strange to have things be more indefinite and uncertain than ever before. Our rounds of chemo have had a certain rhythm to them. This one is different. There's an urgency, now, too. We won't wait another month to do a bone marrow biopsy. The plan is to have one in about two weeks.

Scared doesn't even begin to describe the way that I'm feeling now.

I latch onto Sam's lack of fear. I know that his lack of fear is mostly related to his lack of knowledge and understanding of what's going on, and I'm very grateful for that. He knows that the "ninja leukemia" isn't going away, but I don't think he feels much different. He feels that being in the hospital is a terrible injustice (and it is) but he also understands that there just isn't an option...and so he makes the best of what he has. Movies, pie for breakfast, drawing, iPad games, books, chatting with visitors (yesterday we had two different wonderful friends come by because their kids had appointments at the hospital...!)

So the hospital routine begins, but we don't know how routine it will be. Today is Tuesday, he is getting his first dose of chemo at 9:00am....ish. Then school with the wonderful hospital teacher, Miss T....and then I think I'm going to sneak away to Bubbie and Zeyde's house to make macaroni and cheese. I told Sam I would talk someone else through making it and he was adamant that it's only good when made by my hand. Flattering but annoying....especially since he also told me that he doesn't want me to leave him! Make up your mind, kiddo.

So that's where we are. A lot of breathing and reading and talking and praying is going on right now. Yael graduates from Kindergarten on Thursday and David graduates from 5th Grade on Friday. Then we move into some kind of summer-mode....In five days, we will be at the anniversary of the first time the word "oncologist" was said in relation to Sam and his diagnosis. The calendar is moving and we are just letting it swirl around us as we wait for the new treatments to do their work.

It is hard for me to hear people tell me "I know this will work" or "I know he's going to be okay." I know that you want to believe these things. Trust me, I do too. But we don't know. No one does. We do have a lot of hope. So tell us about your hope and your prayers. Tell us about your love and share your stories with us. (And we may or may not respond to your emails and texts and messages and calls, but we are reading them all.)

We have a strong faith and belief in the hands of our doctors as they were given such ability and skill and knowledge. We know that we will continue to persevere. We know that we will continue to be together, and we know that we can count on all of you to provide the incredible support that you have so far...thank you.

Medical details for those so inclined:
Our doctors are Dr. K (oncology), who has a PhD/MD from the University of Cincinnati, and Dr. M (bone marrow transplant/oncology), who has his MD from the University of Wisconsin. We are in excellent and experienced hands. They are good doctors and good men. There are more people on our team but these two are in the lead. I read their CVs on a regular basis to remind myself of their skills (that's not a joke, I really do). And I look them in the eye every day and see that they have exactly the same goals that we have.

Sam has persistent refractory AML with an MLL relocation, which is incredibly difficult to get rid of, especially on relapse. There aren't a lot of kids who get to this point, especially without any major health issues. We are lucky but in a very small minority. That means there aren't a LOT of studies or a lot of data, but they are relying on what we have, and the data tells them to do the following. There's only one "curative" treatment option -- bone marrow transplant.

(And for those of you who have asked, the MLL relocation is a genetic aspect of the leukemia itself. It wasn't relevant to the initial treatment but has a huge impact on relapsed treatment. The research is small but still telling.)

They are planning on using two drugs that are typically used only for ALL, the other kind of childhood leukemia. This is a documented and studied but out-of-the-box treatment for refractory AML. The drugs are methotrexate and aspariginase. At this moment, the plan is for Sam to get one dose on Tuesday and one on Wednesday, and then repeat one week later, with a bone marrow aspirate and biopsy 14 days after we start. That will tell us if this is working at all. If it's not working, or if it's somewhat  working, they can add in one more drug that Sam's already had, called daunorubicin. Then we keep going with this protocol. One of the doctors told me that he has "data-based hope" to give to us. These treatments are "well-tolerated" according to the doctors. 

In terms of goal, we are no longer aiming for "full remission." At this point, there is a discussion about how much leukemia can be tolerated in order to achieve the desired results of the bone marrow transplant, and how to best get there. I believe that this is because, frankly, there are not infinite treatment options available and we know that BMT is the only real curative treatment. There are still MANY options and treatment plans in the works, just not infinite ones. We keep moving forward. We keep up the hope.

Sunday, June 2, 2013


Refractory: resisting control or authority; resistant to treatment

Our doctors refer to Sam's leukemia as refractory...and persistent.

It has not gone away. It continues to resist the treatments that have been thrown at it.

But we, and perhaps more importantly our doctors, are equally as persistent.

A new plan is in place. It is different. Very different. And yet, the goal is the same.

We work to get him to a place where we can put the transplant into action.

We don't have all the answers yet.

But we have faith and trust in the medical team that we have in place.

Our journey has many miles remaining...we begin this week.