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 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.


  1. What a welter of emotions. I'm glad Sam got to go home (however briefly), glad you got some Shabbat at home with family. And I'm sorry that you continue to wander in such an unfamiliar wilderness, with so many fears and dangers around you. I am keeping Sam's doctors in my prayers, that their judgement should be sound and their treatments both gentle and successful. And we continue to pray for Sam here at my little shul.

    Thinking of y'all.

  2. You're right, no one knows how this will go. And thank God most of us have no direct idea of what you're going through...so if hope and (virtual) hugs and prayers and unconditional support and love is what helps, then that's what you've got. Blessed are the healers.

  3. All I can offer is (((hugs))) and prayers. May he be blessed with a refuah shelemah, and soon!!!

  4. Oh Phyllis, you are an amazing mother. Sending prayers that are filled with hope to Sam, your entire family, and his medical team to get those "ninja leukemia" to leave his body.

  5. Sending big hugs to you all, and prayers and positivity to you all, Sam, the doctors, nurses, and medical staff!

  6. Sending love and healing prayers to your family. "Data-based hope" is a pretty strong statement and it sounds like your are in great hands, as all that CV reading reminds you.

  7. Data-based hope is a good thing! Sam is on the misheberach list at Congregation Beth Torah and we all send our prayers and love to the entire family. If you think he'd like to see his name on the official list, I'd be happy to send one of the Shabbat programs.

  8. Can not imagine the stress & fear that must attack you at sneaky times. Sam may have ninja leukemia but parents have ninja fear. Our prayers are not just for Sam, they are also for both of you & the entire family. As a Nana, I pray also for Bubbe & Zayde. Their fears are similar, their helplessness multiplied...they cannot fix Sam & they cannot fix your concerns & worries. Each of you remains in my heart, my constant thoughts & my daily/nightly/morning/noon & evening prayers. Hang on, you're in for a bumpy ride. You're not on the ride alone....I hope that helps.

  9. While I don't know you personally, I am friends with several of your congregants including Mark and Jean Burnstine and Leslie Bond. Sam and your family are in my heart and on my lips when I sing the Mishebeirach. Thank you for sharing your journey so openly. Healing prayers coming from St. Louis.
    ~Carol Cohen

  10. hugs and data-based hope for you all.

  11. Hope, hope, HOPE!
    We have prayers and hope for all of you. Sammy, Yael, Solly, Bubbe and Zayde too! We admire your courage and wish we could lift some of the burden from your shoulders and mind. How you keep putting one foot in front of the other gives strength and inspiration to everyone. All we can do is send our love and prayers. Feel our hugs!

  12. Thinking of you, as ever. Sending strength and support across these here interwebs...

  13. In my experience, there is a great deal of art in with the science of medicine. Art is about expression, emotion, communication, and love. You have these in full measure, both within your family and in all of us that hold you in our hearts and thoughts every day. Your love and support give Sam the strength to carry on....we hope our love and support will help you as well. If I could carry you across the finish line I would do it in a heartbeat. As always, you have our friendship, our prayers, and our unconditional love. xoxo

  14. They say that there is more than one way to skin a cat......even a cat as sneaky as AML! The world of medicine is filled with stories of drugs meant to work on one disease and being used and effective on another.....I am sure that your doctors are reading everything they can get their hands - and eyes - on! And....you have a whole world of friends and people you don't even know about who are searching, as well. Sam's Nebraska Fan Club is cheering him on - and his parents and family and doctors and nurses, too! We are sending good vibes and prayers to you!

    Jane Rips

  15. Sending you strength and hope and courage and support and, most of all, xoxo from NYC. Holding you all close on this bumpy ride.

    ~ Jane.

  16. Your (and Sam's) hanging-in-there is also persistent, it seems to me. Good for you, amid all the uncertainty and fear. May it be way more persistent than the darn AML. So many, many folks sending you all love and hugs and good thoughts and prayers and hope and more love.... Sam is foremost in my heart and mind today.
    Love, Liz

  17. Rabbi Sommer-thank you so much for sharing your story. It is heartbreaking and uplifting at the same time. You are an inspiration. You, Michael and the kids' committment to family and life is incredible. Keep it up. We think if you often. XO Eliza & Jason

  18. Keeping you in mind in my prayers. God should bring Sam a full recovery, and you all the strength to get through the process.

  19. How many people read this -- hundreds? thousands? And we all want to do something. So we all care and love and pray and hope and mentally give you lots of hugs and hope all that helps you keep standing and strong.

  20. I am sending huge amounts of hope and prayer your family's way. I share your feelings of frustration when people say "it's going to be OK" since there is no way to be sure -- in spite of all the prayers in the world. But I hope that all the love around you buoys you and helps keep you strong.

    Thanks for the medical details, too. As a fellow traveler, I am always interested in those. Clio has a possible MLL rearrangement, too, but her cytogenetic tests were a little funky and inconclusive. So she's being treated with a more high-risk protocol just in case. (And she has ALL, not AML, so it's something of a different ball of wax, I think.)

    It's wonderful that Sam is so positive and strong. Kids are amazing.

  21. Love, hugs and hope to all of you and those caring for you. May this journey continue to have ample moments of peace, joy, family togetherness and love to keep you nourished and strong enough to face the challenges in between. You are in our prayers, on our minds and in our hearts. We continue to be in awe of Sammy's bright smiles and tenacious spirit thank you for sharing.

  22. So many of us are standing with you. I marvel at strong, amazing and funny Sam is. Sending, as always, prayers hopes and good thoughts.