Happy Mother’s Day

Mother’s Day is billed as an opportunity for fathers and children to express their gratitude for the other 364 days a year that mothers devote to their families. However, I see it as yet another day to appreciate the two beautiful children that I have had the privilege of taking care of and getting to know these past six-plus years.

The plan was to get on a plane on Sunday and be home for a late Mother’s Day reunion with the fam. Colin, on the other hand, had other plans and had decided that he hadn’t quite gotten his fill of Memphis.

Oh, So Close

Saturday morning, we planned a final lab check to make sure that Colin had recovered from the insult of chemo; his ANC was booming again at1,700, and he looked good to both of our doctors, who were there to give us official clearance for take-off.

I expected the farewell to be more momentous, but I really couldn’t think of anything else to say to Dr. Gajjar besides “Thank you.” I know, kind of lame. I would say as much to somebody handing me a bag of fast food through a drive-through window, yet not with the same meaning. He and I both know that Colin’s journey isn’t over yet, and our departure from Memphis isn’t really a terminus. The final determination on whether this course of treatment worked will likely not come for some time.

We have also been lucky to have such a smart, thoughtful and dedicated fellow in Dr. DeWire. She’s taken great care of Colin and always gone the extra mile for him. It is exhausting to work with these children, not because of the kids or the day-to-day work but because the mortality rate for pediatric brain tumors is still so high.

Grief, Impotence, and Inevitability

The recent weeks have brought unwelcome news on a number of patients in the clinic, several of them Dr. DeWire’s. We were stunned to find out about another boy in Colin’s protocol, one who arrived days after we did, who died suddenly, evidently due to leptomeningeal spread of his disease. Sadly, it is not the first child who was on the protocol who has died during our time here. This past week, another of Colin’s peers who has improved greatly and is doing well now has a tumor on the spine, an ill harbinger for a very fast spreading cancer.

It is hard to not develop a special relationship with the families we went through treatment with. We understand the protocol and its effects and commiserated through it for months. I have to forgive myself for getting distracted by feeling the pain of those losses and shake thoughts of survivor guilt out of my head; after all, we are not out of the woods. It is unfair to compare cases, since every situation is different, and the diagnoses in all of these cases differ.

As difficult and complex emotionally as it is for us as parents, inside-outsiders as it were, to hear of this news, it is something that the doctors must live with every day. There are periods of bad runs where several patients die in a week, and these are more somber days in the clinic. As we have noticed in other situations, Colin’s vitality is itself a tonic to the emotional drag of a constant cycle of loss.

In oncology, some patients inevitably die. In neuro-oncology, this is even more true and, with younger patients, it is especially so. While the doctors must be excellent physicians, they also have to learn how to integrate the uneven flow of loss and triumph with the practice of medicine. Perhaps that is the hardest part, though competence is always paramount.

As grateful as we are for the possibility that Colin may be cured, we are also grateful for whatever time he gets to grow and flourish. Our worst case scenario is now as good as I had hoped for soon after he was diagnosed.

Many Happy Returns (Maybe)

Perhaps the doctors just don’t want to hear any of this and are happy to see Colin being a playful little boy and are happy to know that he will come back in two months to get scanned, and we will go to the Star Trek room and discuss whatever good, bad or neutral results there are.

Colin, for his part, threw everybody for a loop by sliding downhill through the course of the day. At a Target House pillowcase making event, I remarked to our friend Katie, another mom here, that Colin looked a little pale. She gave me a Madonna smile in response. You may not be making that flight tomorrow.

Rather than pack concertedly, I spent most of the hours of the early evening assessing Colin’s condition and watching his heart rate climb. I reset the alarm limits on the pulse-oximeter. An hour after he consistently topped 160 bpm, his temperature reached call-the-hospital territory and we arrange to return to the hospital to get assessed. I brought my emergency hospital bag since I assumed an admission to the hospital, given our relatively low threshold to bring him upstairs since I was handling him alone.

The shuttle was not operating on Saturday night, so they called a cab, which didn’t have a wheelchair lift. The trunk seemed to be entirely occupied by an unsecured spare tire. I folded the wheelchair and really don’t know how the driver managed to get the trunk closed, though I heard repeated slamming and (presumably) some rearrangement in the back.

Of course, there was no car seat, so I buckled up and held on to Colin. At the same age, Aidan always delighted in opportunities to drive unsafely. In particular, his favorite part of any vacation was not a beautiful resort and swimming pool but the jaunt on a rental car shuttle. Colin was not equally impressed by this situation, perhaps due to his illness. I only hoped that the relative shortness of the trip would outweigh the inordinate peril of driving on Poplar.

Unexpected Sympatico

The driver was a true African-American, dark skinned with the kind of lanky physique that I usually associate with people born outside of the U.S. He was friendly though seemed a little distressed by the medical equipment, and he asked if I needed the suction bag in the back seat. His English was heavily accented and difficult to understand, but it turns out he was eager for conversation.

Was Colin here for surgery? This seemed an odd question, and I tried to guess the conversation he was trying to have, so answered vaguely that he was going to the hospital because of fever. Well, I was completely off-base, since the driver managed to explain that his brother had a trach after suffering a traumatic spinal cord injury after getting rear-ended at a red light in Memphis (on a side note, not a very encouraging morsel of information as I clutched Colin in the back seat).

It turns out that the driver wasn’t freaked out but that he felt a kinship with us that he struggled to communicate. An immigrant from Somalia, his brother is paralyzed and was in the hospital for some time after the accident. During this time, the nurses taught him how to care for the trach. I am guessing that pantomime and broad gestures counted for a lot, since his medical vocabulary regarding trach care was woefully lacking.

During the ride, the driver was concerned as Colin gurgled that he needed suctioning, and I explained that he would cough, which he did on command. I marveled at how this man was thrust into a situation where he had to care for a medically complicated loved one in a world where his communication skills were halting at best.

He moved the brother to Minnesota, where four other brothers live. There, he has round-the-clock nursing care and they are able to keep him at home. He obviously misses his brother and seemed eager to show off his suctioning knowledge.

This conversation made the perilous ride to St. Jude less worrisome, only because I was distracted, not because we were any safer. Once at the hospital, we bid warm farewells and I scooted into the medicine room to have our little man looked at.

Redefining Mother’s Day

There was little question that Colin would get admitted, assumptively delaying our plans to leave for home on Sunday, Mother’s Day. Humans love symbolism, and I was sucked into the superstition of wanting to have both boys together at home, even if late in the day.

Forget idealized pictures of burnt pancake breakfasts and charmingly awkward hand crafted gifts. It is easy to leave such notions behind when one of the brood is looking as puny as Colin was that night. I could force myself to believe that it is important to be together and be disappointed if it doesn’t happen or I could believe that my Mother’s Day wishes are fulfilled by knowing that both children are being properly cared for.

Clearly, cancer elicits thinly veiled coping strategies. Quite honestly, I would have crowed about our reunion if it had actually happened.

On Sunday, Dr. Gajjar arrived and announced a new plan that he had been contemplating all night for Colin: test him for immunoglobulins and plan to give him IVIg (intra venous immunoglobulin) to boost his immune system. He believes that we have been inadequately treating this infection (a culture of trach sputum — yuck, right? — came back positive for a gram positive cocci) with antibiotics, and we need to “tune him up” before returning home.

Once we get an identification on the bacterium and sensitivities, we’ll treat him accordingly with antibiotics and hopefully stop the cycle of returning to the hospital. As for returning home, we will reassess mid-week, if that gives any idea of how much longer we will be in Memphis.

Colin improved overnight but woke up producing a tremendous amount of secretions. All that work is exhausting, so he took a long nap. However, while awake, he was eager to draw with crayons, cut paper with scissors (finally, a constructive use for the reams of paperwork needlessly foisted on us when we are admitted), and play with cars and food. 

I got a lot of hugs, even though he didn’t really seem to understand it was Mother’s Day. No matter. He has taken to tapping my shoulder with his hand when he hugs and has developed a strong grip, often clasping the back of my neck.

When Katie visited with her son Drake, dropping off dinner, Colin stole Drake’s nose with relish, though just as happily returned it so Drake could avoid that particular disability. It seems clear that Colin misses his brother and tried roughhousing with Drake over the edge of the crib. Yes, I would have enjoyed seeing Colin attack Aidan and getting my requisite hugs and kisses from my no-longer-little-boy today, but Drake served as a good proxy for Colin’s purposes. Though a teenager, Drake is patient with Colin and the two seem to share a sense of humor at a fundamental level.

Colin Lets Us Know

The big lesson of these last weeks is to embrace the fact that Colin lets us know when something is wrong. He looks pretty lousy when he feels poorly, and he has been reliably spiking fevers to make sure we get the message. My rule of thumb is, if Colin doesn’t care whether he’s in the hospital, that is exactly where he needs to be.

On Saturday, we swung up to the second floor to let our friends know that we were definitely leaving this time. Really. We had already done so the previous week, announcing our planned departure for the following Tuesday.

A lot of people give us quizzical looks. Weren’t you supposed to leave? Yes, but Colin wasn’t ready yet is my standard response. I think everyone here has tired of saying goodbye, since we seem to pop our heads around the door at any minute. We haven’t worn out our welcome; we’ve worn out our farewell!

Shhhh, Don’t Tell

If you do manage to overlook the iconic burnt pancakes and fragile crafts aside, every day is Mother’s Day. As a mother, perhaps it’s best to keep the secret so you can cash in on the massage gift certificates and so forth. But we all know that we get paid every day for the best job in the world. The salary isn’t terrific, but the fringe benefits are unparalleled.