Nico had a lumbar puncture (LP) on Tuesday and by our standards it went fantastic. If you have read previous posts, you know that we were starting to feel like combat veterans from our experiences in the OR. After the last OR trauma, I asked our doctor if we could try the LP in clinic again. It never felt like we had given sedation in the clinic, versus anesthesia in the OR, a real chance. The only time we tried an LP in clinic, Nico received more than one type of sedation, and he is known for reacting paradoxically when he gets more than one of anything.

Jeff took the day off of work to be there. We were not anticipating this would go well at all. I went over the scenario from our first LP at this hospital over and over in my mind. Would I have to decide whether to restrain my conscious 4-year old while someone inserts a large bore needle into his spine, or go back to the OR where a calamity of serious (potentially damaging) problems have occurred?

Nico was given an oral medication that is not intended to make him sleep (just woozy). After about 20 minutes, Nico acted very drunk. He kept raising his eyebrows, babbled something incoherent and then belly laughed. At one point he lifted his hips off the table and roared with laughter. We realized he was peeing on the exam table, and he found it hilarious. At that point, just as he merrily lay into a puddle of his own urine, the practitioner arrived to perform the LP. It seemed so critical to time this at exactly the right moment, and the moment seemed right. So Jeff and I sprang to the head of Nico’s bed, threw a blanket over him and his urine-soaked sheets, and started to point out to Nico this completely bizarre contraption in the corner of the room. This machine looked like something out of the 1970s film Sleeper. It had speakers on the top, nylon threads protruding from the side, and the center was a giant clear tube filled with liquid that constantly erupted bubbles and plastic balls out of the top while changing colors. Nico was intrigued. There was a “it hurts” moment, but no tears were shed, and the whole thing was over less than 15 minutes later.

The practitioner seemed just as surprised as we were. He had commented, “Well, maybe he’ll surprise us” before he started. After the procedure was complete, nurses showed up in our treatment room and congratulated us. Our doctor stood in the doorway giving us thumbs-up. Jeff and I were elated. We changed Nico’s clothes while he continued to trip out on the pediatric version of Pink Floyd’s The Wall. About a half an hour later, Nico had the munchies, snacked, and we were on our way out the door by lunchtime. This is unheard of and has never happened for any appointment we have ever had at this hospital. We stopped by the cafeteria to pick up soup and roll (what he eats every time we are there), and as we rolled out he vomited all over himself. Immediately after soaking the second set of clothes in vomit, he casually looked up at me and said: “I still want that dinner roll.” I kid you not, he was even hiccuping.

We left the hospital with a bag of clothes saturated in urine and vomit and a little boy wobbling out the door wearing only a pair of underwear and his tennis shoes. I will take a toddler frat party over the alternative any day. Jeff and I felt like we should be handing out cigars and patting everyone on the back. It finally went OK.

I attempted to update this site a few times over the past month. I just could not write about anything because I was still processing it. There is a lot to write, so I will chop it up into different posts.

Our current and past treating oncologists are very optimistic and compassionate men. Both also agree almost entirely on Nico’s treatment plan. Each has a very different lens, however, and even though we are almost two years into treatment, we are learning some things for the first time. Some of it has been hard for us to process or accept.

Nico’s ability to walk, run and climb is very labile. He is clearly impaired, however, and the length of his impairment each month is increasing. For about two weeks after the monthly dose of Vincristine, he falls often, runs with a limp, avoids climbing and acts moody and sluggish. He crawls (rather than walks) up stairs for about two weeks a month. He can climb upright if he holds onto a handrail for a week, and then he seems to recover the week before his next dose. He compensates for the numbness and pain in his left foot by galloping instead of running. An outside viewer would not necessarily notice, but it is obvious and painful for Jeff and me. A few weeks ago Nico told me, “My foot does not listen to my leg.”

When I brought this up several weeks ago, the clinic’s physician’s assistant explained that regardless of the neuropathy, the chemo continues monthly. The only time the dose is reduced is when kids require around-the-clock narcotics and cannot walk without assistance. He also added that I should expect Nico to get worse. This statement has kept me up at night. I wonder if my child will be able to walk by the end of treatment.

The past month, I used a lot of oxycodone and fretted about whether I was adequately controlling Nico’s pain or just needlessly medicating a three-year old with narcotics. In our case, our doctor thinks that physical therapy would be useless. Our oncologist said that eventually these side effects (from Vincristine) reverse, but that it can take years after the completion of treatment.

Of course we are grateful for the reversible nature of these problems. Of course we are grateful that this treatment exists even with the side effects. But Jeff and I watch our child suffer regularly. At the beginning of treatment, I used to tell myself that it was the only life our son really knew, and that he was therefore able to accept this better than Jeff or me. I do not believe that anymore. People know when they are suffering whether it is the only way of life they know or not. Jeff and I are very unsure about how to handle what are clearly behavioral issues related to an exceptional amount of trauma. But we are trying to find answers.

I am not able to just accept any of this. Maybe I am wrong, maybe I am right, but doing nothing feels like we are giving up. I keep thinking about Bryan Fletcher, an Olympic athlete that had childhood leukemia. He endured seven years of treatment (surviving relapse and a stroke) and went on to be a premier athlete. So I am attempting my usual end-run around things.

It is hard to describe this experience, but Jeff describes it as “the West watching Russian fascists dismember Ukraine while muttering the fatalist refrain of ‘nothing can be done’. We do not believe that, and we are not going to let Nico lose his mobility and fledgling independence without a fight.” I am instituting my own PT, and enrolling Nico in as many non-competitive activities as I can (as long as he still thinks it is fun). This requires that I sometimes sit with a frozen smile on my face as he struggles with activities that would normally be easy for a child his age. It requires that I clap and cheer when I want to cry, and that sometimes I just look away.

The “easy” part of chemo is not easy at all. We are coping with some of the side effects of chemo that were less obvious during frontline. We were so focused on survival that the non-life-threatening stuff was less of a concern. The boiled down message to us from clinic is: be grateful a treatment exists, it could be worse, so endure. We do not have any other choice, so I guess we will.