Day 34

We finally got the results of Benjamin’s bone marrow aspirate this morning. It was not the news we wanted to hear. We were looking and hoping for a Minimal Residual Disease number smaller than 0.01, or one cell per 10,000 still infected with leukemia in the marrow. Benjamin’s MRD number was 0.03. This means that he has been bumped into a higher risk category, and his chemotherapy will take a much more aggressive road than we’d been planning for.

Dr. Moore, our oncologist at initial diagnosis, was on the other end of the call. He told us that he too was frustrated with the results, as Benjamin has been responding so well to treatment. However, there are positives to remember as we try to catch this curveball. Dr. Moore reminded us that MRD detection, a relatively recent phenomenon, is what allows oncologists to treat and cure leukemia patients appropriately following the induction phase. It will enable them to give him what he needs to obliterate the 0.03% of leukemia cells left in his bone marrow. And judging from MRD numbers among the moms’ groups I’ve joined, we are still in very good shape with a 0.03%.

Michael and I talked about getting a second opinion, but quickly dismissed it. The Children’s Oncology Group is solidly together on these numbers. Should we request another bone marrow aspirate, we’d be putting Benjamin under undue stress, the marrow would go to the same cytology lab his just came from, and we’d be playing with time we don’t feel we have. We need to accept these numbers and act on them quickly. We know the cells are there. We have to trust that this is Benjamin’s path. It’s not the one we would have chosen, but it’s the one that now leads to his cure. So we take our first steps.

For me, the first steps are research, research, research. Without it, I feel lost. I was in such shock from our call with Dr. Moore that I didn’t write down what he told us–no medication names, time periods, nothing. I called the hematology / oncology nurses twice today, asking for calls back to give me what I needed to begin this process. I went through the motions of our day–middle school tour, homeschool, nature trail picnic, teacher visit–but until I spoke with the nurse tonight, my head was spinning. She rearranged my spinning and gave me marching orders.

So, our Consolidation Phase now shifts to a 56 day protocol. We’ll have a meeting Friday with Dr. Oshrine to map out exactly what these 56 days will look like. We do know that we will be at All Children’s for four days next week and four days the following week, helping Benjamin through a rigorous regimen of new medications. Monday, he’ll get Cytoxin intravenously, and the heavy hydration that accompanies it before and after. Tuesday, he’ll have another lumbar puncture and intrathecal methotrexate, along with his first intravenous dose of Cytarabine, often called Ara-C. Wednesday and Thurdsay he’ll also get Ara-C, and for four days next week as well. Should all go smoothly, each of these eight days of chemotherapy can be done on an outpatient basis, and Benjamin can sleep at home each night. We do have to watch for things like neutropenia and anemia in the second week, at which point transfusions may be necessary. After Friday’s meeting, I’ll know more about what the six weeks after these next two will hold. At the end of the 56 days, Benjamin will have another bone marrow aspirate, and MRD will be ascertained again.

This was the hardest day for Michael and me since diagnosis. Looking at some of the long term effects of these stronger medicines and dosages is unavoidable and frightening. But Benjamin’s face looking up at us as we were on the phone with Dr. Moore told us clearly what we must do. We will not be using the words “high risk” in this house. We will not label our boy, we will take care of him. We will dive in to more research, and work with these new medicines. We will focus on keeping him happy and strong.

Benjamin and I got into our car today to bring our picnic to a local nature trail. We flipped on the radio. Gillian Welch was singing, “Hard times ain’t gonna rule my mind no more.” And when the song was over, the programmer said, “Sometimes, you just have to stop thinking and ACT.” We will strap our boots on and walk this path and celebrate mightily on the other side.


22 thoughts on “Day 34

  1. “Nothing in life is to be feared, it is only to be understood.
    Now is the time to understand more, so that we may fear less.”
    – Marie Curie

    Love you, your strength and your courage. You got this.

  2. much love, hugs, and kisses to all of you. been thinking about all of you all day. our attitudes are so important. I will strap my boots with you and walk to the highest peak until we get to the other side. I know I am so far away, but know you are in my heart everyday, all day. peace, blessings, and forever healing. ❤️

  3. Not the news any of us were hoping to hear from you today, but I have complete faith that the path to healing Benji will get brighter. You are in my thoughts and prayers continuously. Xoxo

  4. Prayers are powerful and on the way. You are amazing parents. For this your son will persevere. Please let me know if you need anything. I’m a phone call away 586-206-2517. Use me!

  5. Sorry it wasn’t the results you wanted but you seem to be accepting and are getting ready for the next battle. While dealing with my issues I found that research relieved a lot of fear. I love this quote: life is the toughest school. You never know what class you are in, what exam you will have next and you can’t cheat because nobody has the same questions. From the notebook of life.

  6. I will be praying for your sweet Benjamin. I will also be praying for his doctors and nurses and that they are on their game. I will pray for safe travels to and from and last I will pray for you and Michael that when you finally lay your heads down at night that you will be able to sleep deep.
    God bless you Laura you are an amazing mom.

  7. Laura dear: Benji looks very thin in this sideways picture accompanying this latest message from you. Hard to understand with all the eating you say he’s been doing.

    So sorry the medical test result wasn’t what you and Michael had hoped for. As I wrote recently, “Hope for the best; expect the worst.” So, it goes, unfortunately. Life is a bitch, but it’s better than the alternative, as there is no alternative.

    Nice to see a loving note to you from my dear friend, Colette, below. As I recall, she first told me of Benji’s illness.

    I send you my love. Sonia

  8. Each of you are in my thoughts, my healing prayers and thoughts! You have a loving village behind you to give you strength! XO

  9. Unfortunately, the disease does not always cooperate with our wishes and throws those pesky curveballs at us. But we just have to be ready for it and slam it out of the park. You all CAN and WILL do it! Remember that patience is a virtue and everything about this disease takes longer than we think it will. Peace and love to all of you.

  10. Laura,
    I will spend more time in prayer and sending positive thoughts Benji’s way as he fights through this next difficult phase of treatment. It may seem like a strange thing to say, considering all he is going through, but he is so blessed to have you, Michael and the huge family and friend support that he has. This positve energy will see him through.

    Devi Wronske

  11. I have been anxiously awaiting your news and am so sorry that it was not what we all had hoped for. My thoughts and prayers are with you as you redirect your efforts.
    Sending much love to the four of you, Kitty

  12. Laura, we pray for strength for all of you as you experience these next few difficult weeks. Please know that he is in our thoughts and prayers. xo

  13. My heart goes out to all of you, I know how disappointed you must be. However, the prognosis is still good, just will take a stronger will and a longer period. I wished there was someway I could help you. I keep you in my thoughts and prayers always. Love You Guys! Aunt Donna

  14. Hi Laura,
    Fellow momcologist here … I’ve been reading (and all caught up from the beginning) since you shared your Day 27 post. I’m sorry to hear the MRD was higher than hoped. So close! But in the face of a ninja like ALL, we do what must be done. Your grace in responding to that news is admirable. I love the quote your friend Rachel posted – so very applicable. I think of you often and will be following the story of Brave Ben. xo (My Jax was diagnosed April 10 of last year and we are now in first cycle of LTM.

Leave a Reply

Your email address will not be published. Required fields are marked *