Home Sweet St. Jude

Life doesn’t offer real do-overs, but there are times when an experience follows the parallel track of something that has come before. Returning to St. Jude after less than a week at Le Bonheur, I had the feeling that I was given the opportunity to completely repeat the past but improved in every way.

Rewind

When we arrived in Memphis in August, Colin was a dormant puddle of a boy lost in the middle of posterior fossa syndrome, cranial nerve deficits, and a difficult hospitalization that subjected his vulnerable body to numerous infections. He rolled through the front door of St. Jude on a stretcher, brought by a Le Bonheur ambulance from an air ambulance flight because we had no other way of getting him here. We entered the unknown but welcoming environment of St. Jude, grateful for the opportunity to be here but complete strangers to our new home.

On January 27, only five days after the definitive and perilous surgery to cure him of cancer, Colin again pulled up to the front gate at St. Jude strapped into the back of a Le Bonheur ambulance. Recalling the past difficulty in getting through the gate back in August and at the time impotent to help, I asked one of the paramedics, “Do you have his medical record number?”

Indeed, they had been given a cover sheet with full information. She smiled at me. “You’ve done this before.”

What a Difference Five Months Makes

I had overheard our assigned room number before we left Le Bonheur. There was some chatter about whether they were expecting us, so I resolved to reduced any delays on the other end. From the ambulance, I called the 2 South-East nurse’s station (I could tell it was East rather than West by the room number), which is programmed into my cell phone. Cheryl, one of the nursing assistants, answered the phone.

“Hi, Cheryl. This is Colin’s mom. Do you know who has him today?”

I could hear Cheryl call the question out at the nurse’s station: “Who has Colin?”

“It’s Gena,” she answered.

“Great. Let her know we’re on our way.”

The most unfamiliar aspect of our trip was the fact that we came in through the isolation clinic, which is used for patients with infectious diseases in order to protect the vulnerable patient population here. For all of Colin’s popularity with the Infectious Disease doctors, outside of the C. Diff he arrived with, he never contracted anything contagious during his treatment.

When we backed into the entrance, Colin was sitting bolt upright because he refused to lie down in the stretcher, and had spent the whole ride enjoying the view out the back. I expected him to cringe or whine at the familiar sight of the St. Jude campus (and thus the threat of further hospitalization), but he squealed with delight when the doors finally opened.

As we made our way through the first floor, people looked at us as they always do when paramedics come through with stretchers. At this hospital, which serves the bulk of its population on an outpatient basis, somebody sick enough to require this kind of transport tends to attract attention.

However, in the scheme of things, Colin is quite fit and has far exceeded even the most optimistic predictions. Although we have not tested his walking skills, he has on several occasions gotten on all fours, and at every turn, he has proven how strong he is. Just ask anybody who has had to restrain him for a flush of his shunt!

Neurologically, we expected some setbacks in the improvements we had seen, most particularly with swallowing and the right vocal cord. Colin’s right eye does not completely pull to the side, and the facial droop is more pronounced than it had been before surgery. Although these nerves were not explicitly manipulated, the area was exposed, and it’s not surprising that there were some effects, hopefully fairly transient.

The Big Question

As for the swallowing and vocal cords, it is difficult to say exactly what the status of those functions is. Before surgery, the swallow reflex was good but Colin was having problems manipulating food in his mouth. Now, his mouth and tongue are still moving, and we originally suspected that he wasn’t swallowing. He has made some audible vocalizations, weaker than before surgery, and had not started speaking again as before.

However, Colin managed to pass the bedside swallow evaluation based on the process of elimination. We gave Colin his current favorite food, ketchup, and watched his trach intently. Nothing red came out his trach, so after a while, we had to assume that it went down the only other available tract, his esophagus.

The speech therapist was unable to verify that she saw him swallow, something that is difficult at best in a small child with a trach. Given the fact that he has been coughing up copious secretions, we think that he is aspirating at least to some extent.

However, it is possible that this region is working better than we might assume at first blush because of the after effects of multiple sedations with intubation. Although Colin has a trach, they did put an endotrachial tube in his throat for both the big surgery and the shunt revision, and this can cause irritation that increases secretions from the lungs.

The speech therapist who evaluated Colin at Le Bonheur was baffled by Colin’s case. She has never seen a child go through a surgery as radical as his and retain the amount of functionality that Colin has. In particular, Colin’s cough reflex is incredibly strong, and he forcefully clears his airway, particularly when awake. This is a good sign, yet not independently definitive.

Loving on Bacon

The night before surgery was Colin’s last hurrah with food, so we ordered up many of his favorites, although Le  Bonheur would not give him bacon as part of its policy to protect children under the age of three from choking hazards. His last meal was momentous since it marked the assumed end of his adventures eating for some time.

However, with the blessing of the speech therapist at Le Bonheur, Colin has resumed his “eating,” with us monitoring carefully to make sure that he doesn’t endanger himself. We know that his swallowing is certainly less competent than it had been prior to surgery, but the fact that there is any apparent functionality is astounding.

Colin sometimes gets overenthusiastic with the food and shoves pieces in his mouth. He ends up whining for our help to fish out stray pieces and at least realizes that he can’t eat like normal when these things happen.

When we returned to St. Jude, which has a more relaxed approach to bacon, he happily sucked/gnawed on it while we nervously looked on, at the ready to retrieve errant pieces. The relative resilience of bacon, the very reason that Le Bonheur does not provide it to young children, is (next to the strong savory flavor) the very property that makes it the ideal food for Colin to “love on.”

One of the Southern expressions we have become enamored of here is to “love on,” which embraces any overt affection. It is especially appropriate to describe Colin’s attachment to food and our penchant for ordering items that he can’t really eat and can hardly taste but can still love on. He will hold a slice of pizza to his lips and close his eyes, as if to absorb its essence without partaking of it corporeally.

Many children with swallowing deficits end up having such strong oral aversions that they lose the impetus to eat. Not so for our Colin, and the willingness of his medical team to allow him full access to food even though he can’t really consume it serves his continued desire to eat by mouth.

Familiarity Breeds the Opposite of Contempt

Although we found a great staff at Le Bonheur, here they know and love Colin and understand our role in rehabilitating him. The whole bacon situation might be alarming in the hands of the ignorant, but our team understands and encourages this unorthodox behavior.

Going from one institution to another always brings a degree of uncertainty. We are unknown quantities to each other, and the most difficult aspect of the transition was not so much losing the comfort of familiarity as it was losing the functionality.

To a large degree, I have failed to appreciate how our months here have demonstrated that we are active and educated in Colin’s medical case. Here, the staff is more likely to listen when we contribute our opinion because they know that we understand the medical issues and can communicate ideas and questions.

Even though both Dr. Gajjar and Dr. DeWire are out of town until next week, I am more comfortable being at St. Jude because I know that we can get things done here. Part of this is our familiarity with the system and part of it is because we are not some random family from off the street.

It’s great to be back here where everybody who stops in and sees him marvels at how wonderful Colin looks. While we enjoyed showing him off before surgery, now it is even more miraculous. Not everybody who knows him here realizes how important and aggressive the surgery was, so that part of his narrative is even more astounding.

The path here has not been without anxiety, but perhaps that makes the return to St. Jude even more sweet. After Colin’s shunt revision, he did much better, but then we were concerned that he seemed lethargic and that his sleeping heart rate remained unnaturally low.

On Monday night, Colin would wake up and open his eyes and his heart rate would pop up, but he would immediately fall back asleep, heart rate plummeting. The same happened even after a flush of the new shunt valve, which was working like a charm.

Ultimately, we found nothing wrong and concluded that his heart rate was low either as a residual effect of the hydrocephalus from the shunt malfunction or because of the surgery’s manipulation of Colin’s puny brain stem. Now, we know not to panic, but only after another disquieting night.

Tonight, it is easier to rest, knowing that Colin is stable enough to return “home” to St. Jude. Once we get a good handle on his current baseline, we expect to go back to Target House and start planning his radiation treatment. Although we have left open the possibility of going to Florida for proton therapy, the chance of that coming together is slim to none.

Despite Colin’s improvements, his primary team is not comfortable sending him to another group of doctors to manage, and it would be hard to get him in the queue for treatment in Jacksonville.

More to Be Thankful For

We are also happy that we finally felt comfortable enough to finalize Aidan’s return to Memphis. Although he misses home dearly and has enjoyed his visit, he also misses us. Being separated from him has been difficult, yet it would have been worse to have him here as we managed one thing and another.

The concerns about the shunt malfunction were alarming but served as an excellent education for us on that subject. In this case, the valve was clogged with blood and debis from the surgery, so flushing wasn’t going to do the trick. However, we know more about how they work generally and what diagnostics can be performed. It’s the kind of thing you hear about but don’t fully understand until you go through it.

One other thing that happened a lot while we were at Le Bonheur is that people asked us where we were from and, after we answered, they would often say, “You’re far from home.” We do get the question when we are here at St. Jude, but not nearly as frequently, and there are a lot of people from much further away here.

If somebody asked me to pick a place to spend six-plus months of my life, I would never have voluntarily selected Memphis. Our experience here has been primarily focused on Colin’s treatment, and we have met many wonderful people through St. Jude.

Through the course of Colin’s surgery, we really feel that our circle has grown wider as we have been touched by so many wonderful people who have been supporting us here in Memphis. We came here as strangers not just to St. Jude but to this city, yet there is now a group from Aidan’s Montessori school that has arranged to bring us dinners every evening.

On a practical sense, this is wonderful and amply appreciated, but it also exposes us to the kindness and generosity of people here. It’s like the difference between taking a chartered trip to a foreign country or living in another family’s house as an exchange student.

We are thankful for all of these new friends who have come into our lives and those who have stumbled in through other ways. Of course, we are as always thankful for the support of our family and friends everywhere. We are very lucky that we have been able to make the choice to send Aidan home where he has not had to personally experience the rigors of surgery. As well as things turned out in the end, it was no walk in the park and not the best thing for a sensitive six-year-old.

Sometimes, it is difficult to recognize milestones and relax because there are so many things that can happen along the way. Returning to St. Jude, making the parallel journey to the unique place that is St. Jude but no longer strangers in a strange land, we are nothing but grateful and relieved.