Day 180

Late last night, I read an article about Gia, a little girl from our community who was diagnosed with Acute Lymphoblastic Leukemia. She began her treatment at All Children’s as well, but transferred up to Boston for T-Cell gene therapy. She will need a bone marrow transplant for long term survival. The police department in the town north of ours was hosting a “Be the Match” day at their station to try and find potential donors for Gia.

At first, when I told the kids what we were doing, Benjamin asked if he could stay home. I looked up and he had tears in his eyes. After talking to him for a few minutes I realized I hadn’t explained the situation thoroughly. He thought we were going to the hospital.

I felt terrible, and tried to give a better explanation of how the bone marrow donation process works (a process I don’t fully understand myself). I told Benjamin were were going to the police station, NOT the hospital, and that we didn’t even have to cross the Skyway. I told him that the little girl was only three, and she wasn’t responding to treatment as well as he was. I told him that he and his brother couldn’t be bone marrow donors, and all I had to do was get my cheek swabbed to see if I could be a match for her. His demeanor completely changed. Before we got in the car, he ran in his room and picked out a toy to give to Gia. Then, it was my eyes that held the tears.

The first person I saw when we walked through the doors of the police station was the mother of another little boy with leukemia. We’d met when Benjamin was first diagnosed. We hugged each other close. Her son looks fantastic. We quickly learned that so many people had turned up to see if they could be a match for Gia that they had run out of test kits. We took the paperwork home to fill out, and we will be getting our kits in the mail. It is so easy to do. Learn more at bethematch.org.

The afternoon was devoted to dusting off the warm clothes, finding the bug spray and water shoes, and packing Banyan’s foot locker for camp. Benjamin seemed to be trying to get my attention in less than constructive ways. Finally, he said, “It’s not really fair, you know,” and then marched away. I found him a few minutes later lying on my bed.

Benjamin refused to tell me what he meant by the statement. I guessed it out of him. It’s not really fair that Banyan gets to go to camp and you don’t? It’s not really fair that you can’t go to Wisconsin to pick him up? Both of these were correct. Before Benjamin was diagnosed, he was looking forward to another Wisconsin vacation, this time with his good buddy. They’d be checking out the camp for next summer together. Now his camp dreams are on hold for a bit. Benjamin said, into his pillow, “Everything is not really fair.”

I agreed with him, and cried with him, and told him he was right. It wasn’t fair that he got leukemia. But I reminded him that he was doing such a good job with his treatment. I told him that before we know it, we’ll be up in Wisconsin again, hearing the loons on Plum Lake sing their lullaby. He’ll dream about the days when he will be a camper, and we’ll wonder which little cabin will be big enough to hold our sweet boy’s dreams.

One thought on “Day 180

  1. Laura dear: I didn’t find your answers to Benji’s saying, “It’s not really fair.” satisfactory. He is so bright to be realizing that and able to express it to you. There must be some book that gives some suggestions as to what to say when a child says this.

    Just about everything in life is not fair: one is born to caring parents, as Benji was; others are not. One is born to wealth, another to poverty. One is born beautiful or handsome, one is born unattractive. I was born in Germany where the Nazis were out to kill me because I was Jewish, Benji was born in the US where no one is out to get him. Yesterday my trainer at the Y told me she works with someone–a man of about 31–who was doing something and he fell and is now a paraplegic.

    Nothing about life is fair and if he expects it to be he will be disappointed throughout his life. All any of us can do is take stock of what it is we do have, rather than what we don’t, and try to make the most of that. You can go pretty far doing that.

    I take it you realized your sons are now 7-11.

    Love,

    Sonia

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