Day 366


One year ago today, Benjamin began his treatment for Acute Lymphoblastic Leukemia. January 2, 2015 was “Day 1.” He had surgery to place his port and he received his first dose of chemotherapy. It was the first of 294 doses of chemotherapy this year, given by spinal injection, intravenous tubing, intramuscular shots, and pills. Benji has also had 106 doses of steroids, 234 doses of antibiotics, 19 blood and platelet transfusions, 54 nights in the hospital, and 176 trips over the Sunshine Skyway.

So, we are officially in the second year of treatment. Two years, four months, and two days to go. It sounds like a long time, but I know with such certainty that we can do this. Glitches will happen, but our mighty team can handle them. Benjamin was due to take his weekend antibiotic today. I had called the pharmacy to have it refilled yesterday, but apparently the automated phone system didn’t work during the holiday. The prescription wasn’t ready when we arrived. A few months ago, this would have sent me into a proper panic. Today, Michael and I tag-teamed the pharmacist and walked out with the medicine within minutes, only amending Benjamin’s schedule by a few hours.

With this recent confidence, I have been observing myself occasionally feeling something like relief. Like parenting through leukemia feels “easy” now. The feeling doesn’t last long; I remind myself where we were three months ago, and I remind myself that one missed dose or one unlucky exposure could send us in a very different direction, and fear reclaims its place opposite relief to balance the scales. During these “cancerversary” days I have also been reading old journal entries, scrolling through early text messages, going through all of the photos on my phone again. They shock me every time I see them, yet I keep going back. Benjamin has been through so much.

Even tonight, I felt the lump of reality rise up in my throat as we were discussing the possibility of dessert after seeing the new Star Wars movie with our family (which was excellent, by the way). I was explaining for the millionth time to Benjamin how glucose and fructose feed cancer cells. In the context of the sugar conversation I actually said to him, “You have leukemia, Benjamin!” I immediately regretted saying it. It hung in the air like Eeyore’s cloud. “Don’t you think I know that, mom?” he said. Of course you do. 

I feel the constant dichotomy of wanting to help Benjamin feel like a normal kid, yet honoring and respecting the magnitude of the path he is conquering. Bringing the rainbow stars to the kids on the seventh floor felt like one small but very positive way to do this. I’m still working out the details, but I’d like to make a window star for any child with cancer who requests one. I can also honor him by placing his long term needs in front of his short term desires. While it’s tempting to give him the _________ (fill in the blank with sugary substance) because hey, he has leukemia, it is my job to make sure his body is as well equipped as possible to thrive during these next twenty-eight months of treatment. I can do this.

I don’t have expectations for year two, but I have intentions. I intend to learn much more and be much more diligent about detoxification practices. I intend to share what we have learned with more families who are further behind us on the path. I intend to remind myself that if I can write every single night for 365+ days, then I can use that same discipline to accomplish other beneficial tasks in my life, like yoga, meditation, reading, sleep.

Speaking of writing, this space has served me more powerfully than I can possibly express this year. It is my record keeper and my therapist and my friend. It is where I put things back together again after they all fall apart. Putting it here, in a public forum, keeps me somehow more accountable than putting it in my spiral notebook. If you have read one entry or read three hundred and sixty six, I am grateful.

I am grateful. 

Going through the texts and the photos and the fundraising pages and the social media shares from one year ago has been deeply humbling. I didn’t really absorb the magnitude or the reach of the circle of light surrounding Benjamin as it was happening. I couldn’t have; I was in another world. But seeing it all now just reinforces for me the power of love, and the incredible fortune our family has received at the hands of it. We will pay it forward the rest of our days.

I am grateful. 

I can’t possibly say enough how thankful I am for my husband and my family. I am very aware that my ability to be so present for Benjamin’s highest good is possible because of the strong ropes of support that have been woven around us. It is rare and it is precious, and not everyone who spends nights on the seventh floor enjoys such a safety net.

I am grateful.

One year down. One year closer.

I am grateful.


4 thoughts on “Day 366

  1. I am grateful that I’ve started my day for 366 days reading your beautiful words.
    And yes one year down, one year closer! Surrounding you all with love, light and abundant health. ❤️

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