Day 626

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We are all settled in up here on the seventh floor.

It was painful to leave our house this morning. Michael and I spent a lot of time just holding each other, listening to the boys laughing in the front yard. I baked a loaf of sourdough and left it on the cooling rack for Michael and Banyan to come home to. We called the charge nurse to tell her we were on our way, picked up our family’s favorite bagels, and hit the road.

Banyan was extremely thoughtful today, going way above and beyond to help, and to make Benjamin feel good. He grabbed two wagons from the lobby and met us at our cars. A bald eagle flew by as we loaded up. We wheeled our belongings to registration, then up to 7 South.

Dr. Moore found us almost immediately as we were unpacking our things. This alone was reassuring. He told us he didn’t have the results of Benji’s bone marrow aspirate yet. All signs point to a relapse of Pre-B Cell Acute Lymphoblastic Leukemia, but without the aspirate, they can’t be completely sure it’s not another kind.

Michael and I were very comforted to hear that Dr. Moore and Dr. Tabori had been in contact. Dr. Tabori recommended a complete body PET scan. He wants to be sure there is no other activity that might change their recommendations. I am assuming this scan will happen in the next day or two. Dr. Grana is on the floor tomorrow, and we expect to have a detailed conversation with her once the aspirate results come back. This information will determine the treatment path that our team wants to take, but they will run the plan by Dr. Tabori first, to be sure each medicine is examined through a CMMRD lens.

All of this means that Benjamin will not actually start chemotherapy again until later this week, possibly Wednesday or so. Dr. Moore assured us that this delay is not putting Benji at additional risk. This is such an unsettling feeling, knowing cells are just replicating in his body abnormally right now. But we understand the need to be absolutely sure what we are dealing with, and to solidify our plan in light of so much new information.

Dr. Moore said that reinduction for relapse of leukemia is a lengthy process that requires more monitoring than an initial induction phase. He said we should expect to be here for about a month. He also said that Benji’s brain MRI results came back. They’re perfect. A great piece of news to hear.

Dr. Moore made us feel reassured, not only by his careful process and collaboration with Dr. Tabori, but by his compassion. It’s something we’ve wanted to see from him for quite a while. He saw one of the One Blood posters with Benji’s picture on it in the hospital. He told us he took a picture of it and texted it to Dr. Oshrine, saying, That’s our guy! Such a simple gesture meant the world to me. When he left our room, I hugged him. We’re in this together.

The nurses came in to access Benjamin. We knew one of them, the other was new. The  new nurse attempted the access and failed. For the first time ever, Benji’s port did not yield blood return, and he was in serious pain. The needle was removed and Michael and I worked with Benji’s breathing to calm him down. Once he was calm, Michael stayed with him, and I sat on the couch to avoid passing out.

An x-ray ruled out any obstruction or damage to Benji’s port, so the nurse we knew tried the access again. Benji pushed through his understandable fear. The access was successful, the blood return immediate. We all exhaled.

Benji’s blood count showed platelets at 9,000, below the threshold for transfusion. Six units were ordered. His leukemia blasts are still present but not increasing. His hemoglobin, ANC, white blood cells and uric acid all looked great. The nurses hung fluids from his IV pole, and once the platelets arrived he received a much needed transfusion (thank you, donors).

After the transfusion, we were left alone for much of the afternoon. With Benji not starting treatment yet, there was little to be done. We moved rooms to one with a bathtub. We hung rainbow stars and prayer flags. We watched movies and football. We went to the game room and played air hockey. Michael brought Benji one of his favorite meals from a local place. Benji is totally himself right now. His spirits were high, so as crazy as it sounds, we enjoyed this day.

When Benjamin was diagnosed, we had such little processing time. We had no idea what anything meant or how to page a nurse or where the comfy blankets were or anything. This time, we had space to get a little more grounded. The CMMRD diagnosis planted the seed that this could happen again. We had time to sit with those fears completely. We never thought it would be this soon–I truly didn’t believe relapse was Benji’s story–but it happened. And rather than being thrust into a 7th floor room right then, we had more than a full day to prepare. It has made a difference in the depth of our breaths and in the presence of our moments. I’m grateful for that. We will need to be deeply rooted as we move through this new territory toward Benjamin’s healing.

 

8 thoughts on “Day 626

  1. Oh, in such a heavy time this post if full of really good news. I am glad you are off to a good start! Super high five for getting Tabori on the team already, and knowing you got the golden boy poster child right there is good, good stuff. That’s our guy, they said 🙂 Brain scan clear! Eagles overhead! Super brother on deck! Really, so good to hear it was a good day. xxoo

  2. Just know that my heart goes out for you all! I love y’all dearly and my thoughts and prayers are with you daily!

  3. I love that the picture at the top of this page is upside-down. I feel like while there is so much love and so much positive energy, it symbolizes just how your lives have been turned upside-down. I’m holding you all in my heart and sending you love from Florida’s east coast.

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