When you were diagnosed, one of my biggest worries, for us both, was your fear of needles. You had so much fear over them that even the most simple blood draw would require many adults holding your body against your will. Actually, I recall a moment early-on, one of the first times we met Ricardo, when he mentioned that we would have to do weekly blood draws for the first couple of months and that detail felt worse than most of the details of cancer thus far. “How would we possibly survive this?” I wondered.
Over time you grew, slowly but surely in your bravery around blood pokes. Most of that confidence built upon the foundation that sweet Deb laid for us. I still feel so thankful that we found her, don’t you? Can you imagine if we hadn’t? She was so kind and so tender to us during that scary season of adjusting to being poked and prodded on the regular. Sometimes when Selah is feeling scared I tell her, “I will give you my bravery.” and I think that is just what Deb did for you. She was a gift Beau, I never want you to forget her.
Once the needle trauma was able to be placed on the back burner, you began to complain often, post-lumber puncture, about how crappy the marshmallow medicine (propofol) made you feel. I figured it was the chemo administered during that procedure rather than the marshmallow medicine itself. But you insisted it wasn’t the chemo. One day, when Dr. Eisenman was doing your pre-procedure check, you told her how much you hated the marshy medicine and she asked if you wanted to try an L.P. without it. I was shocked. I remember I sat in the corner of the room, nervously texting daddy, “Eisenman has floated an L.P. unsedated. Wide awake. Oh my gosh. I think he is going to take the offer.” I was full to the brim with a slurry of fear and pride over the idea of you actually doing it. She explained how still you would have to be, and you, rather nonchalantly actually, told her that’d be fine.
Do you remember Dr. Eisenman? We haven’t seen her in a while. It was her last shift at clinic that day. She was moving to another hospital in the area and had to leave our team. It felt hard to say “goodbye” to her and yet this offer felt like a parting gift. Sometimes I wonder if that ‘last day on the job’ energy is why she offered it up to you. I am still not sure. I think she felt confidant in part because that day the head of the Leukemia department was on the schedule for L.P.’s. This isn’t common as routine L.P.’s are more often done by a P.A. So perhaps, Eisenman knew you’d have the best of the best.
Or perhaps she just knew this was what you needed.
Because you were unsedated and we all weren’t entirely sure how things would go, I joined you in the procedure room. The procedure itself went off without a hitch, as is the norm. My job was to keep you calm, or something. You curled into a fetal positioned ball and watched something on your iPad. You turned the volume up annoyingly high and as I methodically told you each and every step the doctor was taking, you informed me that you couldn’t hear [your show]. I smiled and continued to explain everything they were doing, knowing that you had said, “I can’t hear,” but had meant “Ok, they can go ahead.” I crouched down next to the hospital bed and whispered, “It’s ok, deep breaths.” I was in awe of how brave you were that day. My boy who just months earlier was hyperventilating for an hour over the idea of a tiny blood poke to the back of his hand was choosing to lay completely still while they placed a 3″ needle into your spinal column.
From that day on, you said you never wanted marshy medicine again and went on to do your L.P.’s unsedated. There was one time where the P.A. attending the procedure room couldn’t access you on the first try and had to poke a couple times to get it right. This upset you, obviously. “Do you want to go back to marshy?” I had asked. You looked at me, incredulous, “Mom, no. I never want marshy ever again.” After that we decided that if you were going to get your L.P.’s done awake, we would ensure that you had one of the top doctors in the clinic. I don’t fault the P.A. who herself has likely done hundreds of L.P.s because normally the patient is sedated and the stress of a wide awake 8 year old is surely unique. But I felt sure that a doctor with thousands of spinal taps, instead of hundreds, under their belt would be a better fit. We were right.
From then on, we secured Dr. Maloney as the only one who would do you L.P.’s. In hindsight, I think this is part of why we got to know her so well which ended up being the greatest gift. She really held our hand through relapse, didn’t she. Instead of a 5 minute post L.P. check-up as would have been normal for the attending, we were allowed a good amount of conversation leading up to, during, and following the procedure. She was also so proud of you Beau, remarking each and every time on how she still just couldn’t believe how easy you made it. The propofol nurses would always say the same thing.
Once I was using the restroom down the hall, next to the propofol nurse work station and I over heard them talking about how they couldn’t believe you. “Oh, yeah, the kid in pre-op 2, he straight rocked it,” I heard our nurse gush. It felt like an exhale. The word pride comes to mind, but it was more than that. You had listened to your body, advocated for yourself, and then were brave enough to show-up and do the hard thing. It’s all I want for you, Beau.
This past week was your last L.P., inshallah, with Dr. Maloney. I hadn’t planned to come to the visit with you. After our last appointment I had told your dad that I needed a break, I needed him to take you. I always feel that way walking out of the hospital on clinic days, like any one-way ticket out of there is one that I’d take. I wonder if you feel the same?
The night before the appointment I started doing the math. I realized it would be your last L.P. at Children’s. Your last L.P. with Dr. Maloney. Your last procedure of this treatment. (withholding all that will come with CarT) Suddenly, I couldn’t imagine not being there. I texted Meemaw and, despite my 11th hour ask, she graciously agreed to be at our house the next morning at 6am to watch Jude and Selah. Meemaw always shows up for us, Beau.
It felt like the day should have gone down with some sort of pomp and circumstance, but really it felt rather normal. I was glad to be there with daddy. The three of us being in that clinic room reminded me of diagnosis when we all snuggled into one small inpatient hospital room and hoped for the best. When we are all at clinic, I remember that we are all in this together. We have always been such a team.
It wasn’t until I saw the chemo in the bag on the desk that it hit me: this would be the last time we put chemo into your spinal fluid. It’s been particularly hard to come to terms with that detail of treatment and I think it’s part of why I walk out of clinic so exhausted. Not because so much has happened, especially not to me!, but because so much has gone unspoken. A neurotoxin has been administered straight into your spinal fluid upwards of 20 times and in those moments no one stops to grieve how impossible that feels. I’m sorry it has to be this way, bubba. I looked at the bag and let out a sign of relief. “Let this be the end,” I thought to myself.
The procedure itself went off without a hitch, as is the norm. You curled into a fetal positioned ball and watched something on your iPad. You turned the volume up annoyingly high and as Dr.Maloney methodically told you each and every step she was taking, you informed her that you couldn’t hear [your show]. She smiled and continued to explain everything she was doing knowing that you had said, “I can’t hear,” but had meant “Ok, go ahead.”
She told us that on her way in to clinic that morning she had seen the clinic anesthesiologist in the elevator. When she mentioned she was headed to an L.P. before morning rounds, he was concerned because it wasn’t on his schedule. She told him that it was an unsedated one, on her “star kid.” And he couldn’t believe it. “I know, right? He’s so brave. Wide awake!” she told him. She laughed as she told the story, proud I think of both herself and you. You didn’t acknowledge her saying it, but I often wonder if you hear the things they say about you. I hope you hear them, but more than that I hope you let them settle deep inside.
As the appointment wrapped-up up, Ricardo handed me our next month-long, at-home oral chemo schedule. I mentioned that we’d stop oral chemo, per CHOP’s directive, before leaving for Philly. He casually took back the schedule and crossed off the handful of days that we wouldn’t need to take the listed doses. That was it. The end of 2 years of chemo therapy casually crossed off with red ink.
It was weird saying goodbye. Normally it is a “See you in a month,” or “We will call you this afternoon with results.” But this goodbye was a send off. “No news is good news.” sprinkled with, “keep us posted!”
I wondered what it was like for them, to send off their brave patient into the great unknown. Probably far less that my mind imagined because to survive the life of a pediatric cancer team I think you plain and simply must disconnect from some parts of the story. But nonetheless the room felt full of expectant emotion. Dr. Maloney said something about, “This is the next right step.” and I at once ached that she hadn’t said something more along the lines of “This will work, I promise!” and ached that she loved us so well to not fluff us up with falsehoods.
I think this is the next right step Beau. And I am sorry it has to be this way. You know that, right?
As we left clinic we walked by the End of Treatment “Survivors” bell. I saw you look at it and wondered what you were thinking. At every visit we talked about the day you’d ring the bell as we walked by it, leaving clinic. The day in March 2021 when we’d have the nurses gathered round, cheering as you rang.
Today we didn’t say anything. I still remember the first time I heard the bell ring. It was inpatient in February after diagnosis. I walked into the hall and watched the nurses line the corridor as a mom and dad hoisted their child up to ring the bell. Everyone cheered. I wept. It was everything. We will get there, Beau, we will.
In Philly you will have a handful more L.P.’s and you’ll have to do them sedated because they will also check you hips (note for the reader: bone marrow biopsy). I’m sorry you will have to have more marshy medicine, but you won’t have to have more chemo and I think it’s a trade worth acknowledging.
I wouldn’t wish a single second of this on you Beau, but lately I have been wondering who you would even be without cancer. You are so brave, so attuned to what you need and how you are going to go about getting it. You advocate for yourself, you push back on things that make you feel poorly, you look for your agency in every situation. I’d like to believe we could have raised you up to be all those things without the cancer catalyst, but sometimes I can’t be sure.
The other night I handed you your nightly oral chemo.
“Beau, you are almost done with at-home chemo, can you believe that?” I said handing you the pills and a cup of water.
“Beau, will you miss chemo?” Jude asked, meaning cancer, not chemo. Have you noticed that he has interchanged the terms from the beginning.
I could tell the moment held a lot for you by the way you shifted and looked back at me. Considering a life where this detail which currently felt so big, would cease to exist. The conversation devolved into Jude asking if you’d miss the screen time (since that is what Jude equates to cancer) and me trying to get an answer out of you that was thoughtful, but not forced.
“Do you think you’ll miss having leukemia?”
“Kinda,” you answered as though surprised with yourself.
I felt the same way.
I don’t know what the next steps will look like Beau. I don’t know how much time we will have to ‘miss chemo’. But I do know that either way, with Leukemia or without, I feel like it is one my greatest life’s work to have been with you through this. I think we are both better for it.