Wednesday, July 3, 2013

Ninja Leukemia

Sam and I have had many conversations in which we talk about his leukemia as "ninja." It is sneaky and stealthy and hides well. It is strong and hard to get rid of. He has renamed his leukemia -- it's no longer AML, he says, it's AMNL, the "N" for ninja. (Yes, I know that ninjas are often good guys but they are also often villains. Work with me, here, okay?)
The "truth is in the marrow" and the truth is that Sam's marrow still has significant leukemia cells.

The ninja leukemia hasn't gone away.

For those of you who are into numbers, he has over 50% leukemia load in his bone marrow. 

So what's next? A new plan of treatment, of course. At the moment the plan is for two drugs, used in combination, over a seven day treatment period. Unless things change, this will be done outpatient. These drugs are primarily used to treat adult AML, which is a far more common form of AML. As I've said before and I continue to say, we are in a very small minority cohort. There are not that many kids each year who get AML, and who continue in treatment the way that Sam has done. We are immensely grateful that he doesn't have any other significant health issues, which keeps our treatment options open. Ultimately, the goal is still bone marrow transplant, which is the only "curative" treatment for Sam.

This is the information we have today. On Friday we will have more details of the plan, including how it will work to do seven days of outpatient chemo (hard to do outpatient stuff on the weekends) and how oral chemo works. The details might change, but the final answer, that he isn't ready for transplant, won't change. (And before you might ask, yes, we are consulting with doctors all over the country, we are looking at alternative kinds of transplant, we are leaving no stone unturned.)

Sam is fine. He had an allergic reaction while receiving platelets on Tuesday. It was the first time any of my kids have had an allergic reaction to anything, and its relatively minor nature gave me a far deeper appreciation of my friends who carry epi-pens for their kids. Tightness of breath, hives all over his body, a spike in temperature and blood warranted a whole roomful of nurses making sure he was okay and a really scary hour for me. Benadryl worked quickly to reduce the reaction and he didn't need epinephrine. One of the nurses said to me, "wow, you're so calm." In retrospect, I appeared to be calm because I didn't know enough to be scared! (And he was talking, so my lifeguard training reminded me that he had an airway.) I don't think they'll ever start an infusion of platelets without my fear again. This one allergic reaction, however, doesn't mean that it would ever happen again, but he will always be pre-medicated before receiving platelets just in case. Luckily, we could laugh about it a couple of hours later with the nurses, as they pointed out that this is just Sam's way of keeping us on our toes. Riiiighhhht......
Sleeping off the Benadryl
So I repeat, Sam is doing fine. He feels pretty well. He ate three bowls of yogurt for breakfast! His counts are quite low, so we're hiding out at home for a few days while we wait to see how he feels and does with these low counts. On Friday we'll return to the clinic to finish up the platelet transfusion and meet with the doctors about the new course of treatment, which will most likely start on Monday. There's no reason to wait, there's no reason to let the leukemia grow.
This is not where we wanted to be. This is not what we wanted to be doing. Each day that his leukemia sticks around, it brings with it the possibility of infection and side effects. Each day is scary.

But we are not daunted by its ninja stealth...and we continue to march forward. Our doctors have plans in place, and they continue to give Sam the highest standard of care. We are scared but we continue to buoyed up by Sam's energy and delight in the simple things in life, like a new umbrella on a rainy day. We continue to be grateful that our family is together and that we have all that we need in so many ways.
This week we finish reading the book of Numbers in our Torah reading cycle. At the end of a book of Torah we say "chazak, chazak, v'nitchazek" -- "be strong, be strong, and let us be strengthened." The Torah tells us over and over again that we should not be afraid, and we should be "chazak v'ematz" -- "strong and courageous." And so we continue to be strong, to find the courage within us to move forward each day, to know that we are not alone in this terrible process. But the Torah doesn't promise that it will be easy. It just tells us to stick together and keep going...and so we do...
Not quite enough for a comb but he's close...


  1. We wish the marrow had a more appealing truth, but we are humbled and heartened by your strength and resilience, particularly Sam's. If only all our love and prayers could put this whole mess in the rear-view mirror! We have always been, and will always be, in your corner.
    The Kalmans

  2. Phyllis and family, I hope you can feel continued support from all of us. We read these updates hoping for better news, and know that there is little we can do to help. So here we stay, in these little comment boxes, sending forth love and support. Thinking of you.

  3. Sending your family so much love, from ours.

  4. Praying and thinking of all of you...

  5. Sending you love from Madison. Your posts are powerful and potent in their honesty. People may not know just how powerful they are until they confront a challenge in their lives and can look back to your words and feel a little less alone in this world.


  6. Sending love and hugs. No fair! That's all I can say!

  7. Sending love from Israel, I have been following and thinking of you. Refuah shlemah.

  8. Sending love and best wishes and gratitude for your inspiration. You guys and Sam are having quite a life. Your days must be gigantically rich. Your moments must be precious and savored. While no one would envy your situation it sure must teach you some important and useful lessons about what is important... like umbrellas! Thanks so much for so generously sharing. What an adventure!

  9. THe Dickson's have you in our hearts. THese posts are so powerful and leave me feeling hopeful. Sending love and hugs.

  10. Well, da##it!!! Not the news anyone wanted. But you go to war with the army you've got. Each piece of bad news, each day of treatment brings you closer to the victorious end. So wish it didn't have to be a long road for each of you. You are always in my thoughts....even yesterday at PetSmart. While buying dog food I saw a Superman toy for dogs....I considered it for Sam, realizing of course he's not a dog....weighed the benefit of a funny Superman dog toy...decided it might be too weird. While weighing the choice, a prayer for healing was said. Never far from my mind & always in my heart. May you all receive strength from what the rest of us are sending. Refuah shlema.....

  11. Chazak, chazak, v'nitchazek indeed. Thinking of y'all with much love and many prayers.

  12. Thinking good thoughts from Israel. Praying for a complete recovery.

  13. Sam, you are a real trooper and those ninjas better watch out! Keeping you in my prayers!

  14. I had an allergic reaction to platelets, too - and after that the premed plan worked every time. It IS scary. Boo on that! Love to you.