This is the first post in a series of posts I am going to write to explain why we have made the choice to homeschool Beaudin and Jude. It’s loaded and full of space that is clear as mud. I keep waiting to have a clear, concise post to detail why we’ve made this choice, but really the choice was never clear nor concise. It was hard, impossible, perhaps more complicated than stepping in to cancer treatment in that it was something we choose. Having to open up the painful door of “What caused this?” while saying “good-bye” to a school we deeply adored. There have been hours and hours of tears sobbed over this decision. We didn’t choose cancer, but we have to wake-up every day and choose how to move forward with cancer as our reality, and that perhaps, is that hardest part of all.
It was genetic, which helped dissipate the panic of how exactly my son had gotten cancer. Genetics. That makes so much more sense. Not that a genetic disposition isn’t of concern, but it helped explain why Beaudin, a child who was “never sick” ended up with Leukemia.
He was 6 years old at diagnosis and strong. I can count on my hand the number of times Beaudin has had a cold. He has never had the flu. He has had two episodes of fever his entire life. He has had productive bowel movements daily. He has never had a vaccine, nor an antibiotic, never had any pharmaceutical for that matter. He always had a healthy appetite, and we’ve generally avoided inflammatory foods like dairy and gluten. We’ve always focused on healthy fats and lots of raw vegetables.
Then let’s talk about his toxic load. It was low, I may say as low as possible in this society. We used coconut oil instead of diaper rash cream, stainless steel straws instead of plastic. I handmade potty training underwear so we didn’t have to use ones lined with plastic. We use homemade sunscreen, and would never use bug spray. We don’t wash our hands after playing outside, and don’t require shoes either. We have a full house water filter that reduces the fluoride and chlorine in our water supply, and expensive air filters throughout our house to mitigate potential air quality issues. All of our sheets and mattresses are organic, and our cleaning products: all combination of vinegar and essential oils in amber glass jars. Our leftovers are stored in glass and our fresh organic produce is soaked in vinegar water to remove traces of pesticide. We pack in healthy snacks to birthday parties, and turn down anything with food coloring. We turn our Wi-fi off at night and have put in measure to reduce the signals in our home. We’ve mitigated EMF pollution, and purchased the lowest EMF appliances. We have a Squatty Potty and sleep on grounding mats.
You name it. We’ve done it.
This detailed history of our toxic load is not to boast. It is to detail how much focus and attention we have put into these details of our life. Not because we thought they would protect us from cancer, explicitly, but because we were convicted that this was stewardship of our bodies, and our planet.
And in spite of it all, Jude was born sick. Jude, not Beau. Jude.
He is Beau’s younger brother and doesn’t get much airtime around here. But here he is, cute as hell:
At 3-weeks old we took him to the ER because of his labored breathing, and really he didn’t get better. He had chest congestion/ breathing issues for years after that. He went to specialist after specialist, being diagnosed with “croup” 4 times and having 6 episodes of 103+ fever before he was two. We were told, “He is just one of those sickly kids.” He was allergic to all kinds of food and spent a good majority of his younger years with bright red, blistery eczema on his cheeks.
He often had diarrhea and loose stools, and we’d often remark- how do we have two kids with such different bowel movements (Is this weird? Assessments of bowel movements has always been a part of our health care.) After many (MANY!) tweaks to his diet, and a rebuilding of his microbiome (a la the G.A.P.S. diet) things started to slowly improve. It was a long road to recovery, but he was much better than he ever had been. However, anytime a cold hit our family, Jude was the first to go down and the last to recover. Anytime a cold was passed around school, Jude was sure to get it. He was healthier than he’d been, but he was still not solid.
All of this set the stage for why hearing that Beaudin had cancer was so confusing. Yes, a cancer diagnosis is hard for ANYONE. But the complexity for us, was that it was laced with:
“Beaudin?? Seriously? He is the healthiest kid I know!”
“Wow, if anyone, I’d have thought it’d be Jude.”
“If you guys can’t prevent cancer, why bother!!”
And more, many more. Loads of commentary on how none of this made sense. Some of these thoughts from friends, some from ourselves. How could this be happening…. to Beaudin….?
To process my grief, I began explaining Leukemia to people using the analogy our Fellow had shared. “It’s a one-two punch. One being genetic disposition, and two being an activating event.” I repeated in over and over, because hearing that it was genetic was healing.
Betsy, there is nothing you could have done differently. Nothing. It’s genetic. That’s ‘in the womb’ level science, genetic code. There is no altering that. Look forward.
For a full year, I rested deeply in the genetic nature of Beaudin’s Leukemia diagnosis. It helped soothe the pain of how this could have happened to our healthy, low-toxic load, son. Every night as I would lay in bed, wondering how this had become our life, I could stop myself from spinning out in the “what could I have done better” spiral, because I knew we couldn’t change his genetics.
Betsy, there is nothing you could have done differently. Nothing. Look forward.
Last month we were at Beaudin’s monthly clinic appointment and had our physical examination with the Attending. Normally, we see our Fellow, but he was out of the office and so the appointment was a bit different. We began a conversation about how Maintenance Therapy is a weird “new normal” because you have so much time to consider the bigger picture. I casually mentioned to her, “Yes, but what has helped me is knowing the whole one-two punch thing. Knowing that his Leukemia was a genetic inevitability.”
She stopped me. “Well…no, that’s not how it works.”
What? Yes it is. I am sure it is. I am absolutely positive that that is what I heard in that small room with buttercream yellow paint and the tacky wall stickers that said, “Hope, Peace, Love.” I am sure of it. I know it. This isn’t my fault. It’s genetics. I AM SURE THAT IS WHAT HE SAID IN THE BUTTERCREAM YELLOW ROOM. He told me this wasn’t my fault. I heard it. I know I heard it….. I think….. I think that’s what he said…The walls were closing in on me and he told me it wasn’t my fault.
“Well, you’ve got the “one-two punch” phrase right, but it’s not genetic. We know there is a genetic component in patients with other genetic abnormalities, like down syndrome, but in a child like Beau, there is no genetic variable. None.”
But. That’s not how I heard it. That’s not….. what I needed to hear…..
“The one-two punch for Leukemia in kids like Beau is a long standing chronic immune suppression, the first punch, followed by an activating event, the second punch. Something, in his environment, that was holding down his immune system, mildly, over time, that allowed the activating event, the second punch, to take hold.”
6 thoughts on “The comfort of a genetic, one-two punch”
[…] This is long. Like, I should probably divide it in to a couple posts and add in some pictures, long. But I am not going to spend the time doing that. Those we read through will care more for the details than the format. It may help to review this post here. […]
[…] This is long. I should probably take some care to edit it in tight, add some picture, what have you, but I am not going to spend the time doing that. Those we read through will care more for the details than the format. It may help to review this post here. […]
[…] “Oh, so they don’t have anything to do with this,” I thought, “because the other doctors, in the buttercream room, just promised me that this wasn’t my fault, that this was genetic. I am sure of it. He said it in that interior room with the decals.” (you can read more about that mishap here.) […]
[…] survival rates have gone from zero to upwards of 85-90%. Some may say, like our doctor too us, in the buttercream yellow room with the tacky stickers told us at diagnosis, that 1.) 94% survive without incident and 2.) It’s harder on the […]
[…] we had unknowingly put Beau somewhere that had caused this. I’ve written about that at length here, here, and here. What if Beau’s survival math wasn’t about chance as much as it was […]
[…] mold in the water damaged building where he attended school. I have written about that in detail here, here, and here. However, I need to go back and consolidate those posts as they were written when I […]