There feels like so much to write and yet nothing to say. I’ve tried to write this update a couple times and find myself all over the place. There is a lot happening on the schedule and even more emotionally. I want to capture it all.
Things have been very busy here. We hit the ground running.
Joshua (my husband) and Jude were able to join us to settle in to Philly over the weekend. We enjoyed all the donuts Jude could talk us in to, some sight seeing, and time together as a family without a 3-year old setting the tone. For example, unpacking suitcases I found scissors and glue Jude brought, because why not, and I just casually tossed them onto the desk in the kid’s bedroom. I thought, “How relaxing, to have scissors and glue and no concern that they will be used recklessly by the toddler.” It was nice to have this break. (And already, I miss her terribly. Because that is motherhood.)
Anyhow, we dropped Joshua and Jude off at the hospital on Sunday evening and as we drove away I felt the shift in my body. Vacation was over, it was time to get to work. Beau turned on the Hamilton soundtrack (our favorite) and we drove back to our apartment singing at the top of our lungs. We also stopped at Target to pick-up some household items and I said “yes” to everything Beau wanted including, but not limited to Doritos, which he had never tried. Well, he is now in love and requests “the cheese Doritos” at every opportunity.
Anyway, to prepare his body to receive his Car T cells next week, he receives 4-days of lympho-depleting chemotherapy to, basically, kill off his healthy cells, making room for the t-cells to proliferate. The chemo would also could kill off any cancer, but as Beau’s levels of disease are so low, that is not as likely. If chemo would solve this problem it would have done so already…
Actually, after Beaudin’s last lumbar puncture in Denver, we got word that his blasts (immature cancer cells) were at 0%. They haven’t been at zero since November. True to form, that news was hard to hear. Picture, if you will, signing your kid (and family) up for a new therapy that will radically shift your life for a while and perhaps forever, with a host of unknowns and fine print, only to get a call from the doctors with the results, “there is no measurable cancer in Beau’s body!” Cancer is so dumb. There I was in our laundry room, getting Selah’s shoes on for school thinking to myself, ‘I wish he just had a little cancer left. That would make this easier to agree to.” Who thinks that!!!
It felt like an impossible way to go into this grand experiment, with no disease. Luckily, a conversation with our doctor (who I adore more and more with each conversation…) later that day eased the tension and confirmed that we were still making the right choice. There were 0% blasts in Beaudin’s spinal fluid, from that sample, on that day. The same results we’d gotten for 1.5 years prior. It doesn’t mean the cancer is gone. It means its back to hiding, really, really, well. It’s still there… somewhere.
So, back to Philly. Monday and Tuesday Beaudin received two chemotherapies, fludarabine and cyclophosphamide. The latter is known to be very hard on the kidneys/bladder and, as such, requires 3 hours of post-chemo saline hydration. Aside from the long days, Beaudin handled to chemo decently. He did feel “chemo-y” (nausea) by end of day two which we were able to manage with zofran. We haven’t had chemotherapies that make him feel super crummy in a while. It brought back all the old feelings of poisoning your child’s innocent body that I had been able to put behind me for a while with seemingly meaningless nightly oral chemo and a quarterly L.P. the last year or so. Last night Beau feel asleep before me and when I went to give him the cliche”mom wipes hair off forehead and kisses sleeping child” goodnight kiss, he was drenched in sweat. Soaking. His body was detoxing all the crap we have pumped through it for the last 72-hours. I cried. It didn’t help that I had just gotten a video of Josh from Selah in which she was upset that “Mommy wouldn’t come home.” The video taken in hopes of connecting with me (She really does not like FaceTime and so I sent her a simple video of me reading a book, and this was her reply), but it was just heart-wrenching.
We are all doing to best we can and the best we can last night looked like me weeping into my pillow that we are apart, that Beau’s body is detoxing so hard his pillow is wet, that Joshua is such a good dad to Selah, that I miss her so much. I needed to get to bed, yet I couldn’t sleep (which is not common for me). I laid there, staring at the ceiling crying and thinking, “I want a new life.” In the past when I have thought this, I have always imagine me, thin, young and on a glorious beach somewhere (sorry Joshua, but I am alone…) I daydream about is like a true fantasy. But not last night, last night I laid there crying and picturing a new life. The life I am desperate for. The life where I am at home, with my husband, and with my three healthy kids. I want that new life.
Beau slept restlessly and at dawn woke up asking, “Mom will a nightmare affect my L.P.?”
“No, sweetie. Are you ok?”
“Yeah,” he rolled over, “I have just been having terrible nightmares all night.”
I have to wrap this up because we need to head over to the hospital for our very early check-in. Today Beau will have his baseline bone marrow biopsy and lumbar puncture (L.P.) and then his final dose of intravenous chemo aka, through his port. (The L.P. itself will not administer chemo, but only check for disease. He is all done with chemo into his spine, remember.)
Holy moly, last dose of chemo. hopefully ever, let it be so. Wow. Ugh. This is cancer, or maybe more so relapse. Not realizing that today could be the last dose of chemo ever. Not asking for prayers about a bone marrow biopsy of lumbar puncture because they seem so routine I forget to mention them.
The sun hasn’t risen yet. It’s dark in the apartment. I am drinking a Nespresso coffee and looking out over the big city, slowly coming to life. Yesterday I read the passage from a book I was gifted by a fellow cancer mom that I thought I would share here to conclude.
This is the trick to stay well, isn’t it: To feel the sun even in the dark. To not loose the truth of things when they go out of view. To grow just the same. To know there is water, even when you are thirsty. To know there is still love, even when we are lonely. To know there is still peace, even when we are suffering.Mark Nepo, The Book of Awakening.