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 home...it'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.