I have been struggling with the loss of my son. People often ask how our family manages, how I even get out of bed in the morning. I have had physicians over the years declare that we must have a very strong faith, words that sounded curious to me partially because they come from medical folks, but mostly because we are not affiliated with a specific denomination.
What I can say with certainty is that regardless of your church membership, losing a child will give you spiritual pause. My conversations with God over the past month have been filled with questions and confusion. I had every confidence in traveling to Houston, that MDA was where we needed to be. Every sign, every single breadcrumb pointed to Texas. I prayed throughout the clinical trial process last fall, that if this was not the path that we should be on, to please make it very clear, very obvious, because God knows, I am not so smart.
While we were in Houston over the holidays, I knew that Brent's road to recovery would be exceptionally difficult. But neither Brent nor the rest of us have ever been afraid of hard work. And I kept thinking about the medical flight that showed up, one that I didn't even know that we would need. Brent miraculously got to Houston, and the cells were right there. His life was in a precarious balance, but our faith was not.
Since Brent has died, I am haunted, perplexed with what I am supposed to do with this experience. What was the point of his struggle? I haven't been afforded the luxury of being quiet and still, as some have urged, with Lauren finishing up chemotherapy. But I wonder during my quiet moments, why we needed to be in Houston, if not for the cells.
A dear mutant friend of mine offered to take me to see Joe Biden speak in Washington DC. Mills is a nurse with the Navy in charge of executive medicine. Among other people, she arranged care for Joe Biden's son, Beau and security for the Vice President and his family to visit him at Walter Reed. As a thank you to his son's caregivers, tickets to this event were offered, and I got to be Mills' +1.
I have not had time away for myself since Mother's Day, when I went to Sloan Kettering to visit our friend Gabby, while she was dying from breast cancer. So, I carved out some time for self care, and drove to DC on Sunday. I had hours alone in the car to think, and to cry some. I had conversations with God. While I have no doubt that there is purpose in all of this, I am super curious to know what it is.
Patience, we have long established, is not my strong suit.
I have followed the progress of the Cancer Moonshot from its announcement. As I would read research developments with my coffee each morning, I would share interesting and exciting things with Brent as he started his day. We spoke admiringly of how Joe Biden used his painful experience to help others. The Moonshot investment was incredibly encouraging and it was established just at the time that immunotherapy began to explode. I really thought that Brent and Lauren would ride the crest of that giant wave.
Joe Biden is on a book tour, sharing his experience with grief, having lost a son to cancer, a son full of goodness and promise. Beau was also in a clinical trial, hoping to ride the same crest. I went to the event thinking that hearing Uncle Joe speak might be helpful to my soul...because while we might seem like very different people, I could certainly relate to his disappointment.
When we got to the venue, Mills revealed that we had the opportunity to go to a 'meet and greet' where you can get your photo taken with the Vice President. I slipped a photo of Brent and Lauren out of my purse, because I wanted to share with him how much the work that he does has mattered to us. I struggled emotionally as we approached, and my dear friend introduced us. I could hardly speak for my overwhelming emotions.
When Joe Biden learned that Brent had recently died, and that Lauren was in treatment, the meet and greet line abruptly halted. He wrapped his arms around me and told me that he truly understood what I was going through, having lost two children. He murmured kind words and assured me that I would get through this. He held my hands in both of his and looked at me with eyes that I recognized...ones filled with understanding, and deep with grief. Mine were filled with tears, so it was a little blurry.
He called over to his assistant and asked that I be given his personal cell phone number--and Mills's eyes widened. The Vice President said that he wanted me to call him if I needed anything, even just to talk. It was rather surreal, thinking about how often our family discussed the important work that this man was doing. But at the end of the day, Joe Biden is simply a parent who knows what it is like to lose a child. There is no escaping this.
We took our seats in the theater to listen to the chat between Jay Cohen and the Vice President. As they began to talk about the book, I heard Joe Biden describe meeting me, our loss of Brent, and of Lauren being in treatment. The book, he said, was written to help folks with loss. An hour later, Jay Cohen brought our family up again...it was the strangest feeling, sitting there in the audience, anonymous among thousands, yet not anonymous.
As I drove through the mountains yesterday in particularly bad weather, I thought about what I will talk about when I reach out. (Mills keeps messaging me, urging me to make the call) I feel a kinship with Joe Biden, in faith, in loss, in determination to do something good with it all.
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Uncle Joe should send me his dry cleaning bill, because I think that I might have snotted on his sleeve.
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April, 2018
I forgot that I had written this blog post in February- the persistent snow in April feels the same even if other things are much different. Lauren has finished treatment, but another tumor was removed from her leg. The pathology was reviewed by MD Anderson, who determined that it was osteosarcoma, although this is a most unusual picture of metastatic disease. I waited anxiously during her PET scan, furiously playing words with friends and looking at my phone for distraction.
I couldn't pray in that moment, feeling overwhelmed by all that we have gone through over the past six years, and especially the events of the past six months. I was done petitioning God for guidance. I asked for no breadcrumbs. I was sort of throwing the bullshit card because, well, we needed a break, and clearly we weren't getting it.
It was then that an email response arrived from Biden's Cancer Initiative, suggesting a couple of advocacy groups that I might work with. That seemed like a rather big breadcrumb. And while I still could not pray, I did make a promise: I will do the work.
Lauren's PET was completely negative. Her lungs were clear. It was an isolated met in her skin, which is absolutely not how this disease works. It is unsettling to have a child who does not follow conventions and rules. I think that it is unsettling for physicians as well.
June, 2018
I return to this story of Mills and Joe Biden.
I went to Mill's retirement party over the weekend, which was sort of like going to a wedding without a groom. I should mention that this is the first time that I have been in a large group where people don't already know our story. Socializing is kind of awkward.
"How do you know Jennifer? Did you go to college with her? Are you in the Navy?" Different shades of the truth always lead to the same end: I am a mutant friend. We met online in a support group. Mills is an amazing cancer friend. LFS.
Follow up question--so you have had cancer then? Nope. Sigh. My kids.
Inevitable follow, to the follow up question--How many children do you have? This feels like a trap, a trick question. I have four. Two affected. One died. It is a party, why am I talking about this? There were several non-cancer-y guests who went on to share some pretty cancery stories with me, which somehow made it less uncomfortable. We talked about the challenges of illness, to be sure, but also the good that can come after loss.
I am keeping that promise that I made, and am doing the work.
To my credit, I do not cry during this retirement party. At the pre-party, the night before, I met Mill's mother, who has lost both her husband and son to cancer. The majority of our 'mutant posse' was there, helping me to spill some wine and tears. Plenty of both.
But at the retirement party, I could focus on celebrating my friendship with Mills and my other dear friends there, rather than how sad I am about Brent and our friend Gabby who died from breast cancer last summer. There was a whole lot of laughter, which I know honors both of them.
Back at home, my brother shared our story with a friend of his, who runs Senator Sherrod Brown's campaign operations for Medina County. He called me up out of the blue to offer tickets to a fundraising event. Joe Biden would be speaking at the dinner.
I very much wanted Lauren to meet the Vice President, and picked her up from Flying Horse Farms oncology camp a day early. I was stunned that the Vice President remembered me, months later, as I came up to introduce Lauren. (This is an amazing gift that politicians have) Ever kind and gracious, he offered encouragement to Lauren, insisting on a photo of just the two of them.
Neither one take a bad photo.
December, 2018
I have been mentally stuck, not writing very much. Our long year of grieving is coming to a close. I miss my son, but am channeling that energy, working to change the things that did not serve him well. I have seen some progress in both legislation and policy, something that I am proud to be a small part of, adding my voice to the chorus. There is power in the collective.
Last night, I read that Joe Biden had another stop on his book tour in Montana. He was interviewed by Bruce Feiler, who I had skyped with for two hours back in April, as part of his own book project. He is a best selling author, who also happens to be a 10 year osteosarcoma survivor. He was also a patient of Dr. Healey, the brilliant surgeon who worked tirelessly and successfully to save my son Brent's leg, back when he had his first cancer.
Missoula Current article
It is odd to me, how the world has become so much smaller, and more interconnected. I am very glad that I am tangled up with the sort of people who are using their time, their talent and the platform that they are afforded, to make good things come of their struggles.
I am trying to do the same, just fumbling my way through.
