The Sky is Falling!

Memphis has collapsed into pandemonium over the thinnest blanket of white that lasted long enough only for extremely fleet shovelers to find anything worth clearing from sidewalks. The snow is nestled in stalks of dead grass in little clumps.

It is barely too warm for any flakes to hold shape, though the gray skies have prevented the sun from shining through. On a sunnier day, the layer of flocking that has stuck to car windows would have started sliding down in the late morning. I actually saw somebody using a snow tool (that’s what sleeves were made for!) to clear his rear windshield.

The response to wintery precipitation here is amusing to us, though we Nutmeggers must seem like babies compared to Alaskans. On Wednesday, we ran into Ms. Angela, Colin’s speech therapist, whose husband asked if she would drive to work on Thursday if it snowed.

With a modified barium swallow for Colin scheduled on Thursday at 1 p.m., she was determined to make it. If not, Dad was going to go out and fetch her. The snow wasn’t even worthy of four-wheel-drive, though we found out that some schools have been canceled, in part because of the inability of the diesel school buses to start up in the cold.

Aidan has descended quickly into the general panic and exclaimed that school absolutely must be canceled since there was so much snow out there. We would be absolutely ashamed of him if it were not for his other fine qualities.

When You’re Up, You’re Up

The past 24 hours have been a whirlwind for Colin. His third (and final!) neurosurgery has now been set for the morning of January 13. In the time since he left the hospital after Christmas, he has improved by leaps and bounds. However, we have had the most dramatic wave of events in a single day.

On Christmas morning, we knew that he was slated for surgery sometime in January but had to wait for all of the details to be put in place. For one thing, Dr. Boop wanted to make sure that the endocarditis hadn’t gotten any worse (so do we!) and asked that the transesophogeal echocardiogram be repeated prior to surgery. This will give a good look into Colin’s heart and the “vegetation” growing in it, with the hopes that this will give Dr. Boop the green light and step down his anti-fungal regimen from I.V. fluconazole to a liquid we can give him “orally.”

The concerns over Colin’s heart set off a protracted haggling session among the doctors. The cardiologist didn’t want to do the test until Colin was sedated for the surgery itself. Dr. Boop didn’t want to wait until the day of surgery, so he asked that it be done at Le Bonheur the day before surgery, requiring an extra day of admission. Dr. Gajjar didn’t want to cut it so close to surgery, thinking that Dr. Boop will otherwise harbor some doubt about whether the surgery will take place. He also wanted it done at St. Jude, in part because he is well known to the anesthesiologists here (thus reducing the risk) and also because it really is an outpatient procedure, and the other plan would rack up a needless bill.

In the intervening days, we have enjoyed a vacation from the hospital and have finally transitioned into life with Colin as an outpatient. He left the hospital on Aidan’s birthday, the 26th of December, and has been getting wigglier and perkier by the day. It has been a strange kind of limbo, one that we knew would end abruptly with a readmission to the hospital for a risky and nerve-wracking surgery.

Since leaving, we have simultaneously been playing a waiting game for the next surgery and savoring every moment of Colin’s freedom and improvements. This balance is part of the “trick” of living with cancer or, perhaps more precisely, the trick of living in the present. It is high stakes Zen practice with the benefit of immediate gratification.

A Tough Act to Swallow

One thing we realized was that Colin had begun swallowing at least somewhat, since his secretions would magically disappear into his stomach. Given Colin’s well known passion for eating, Dr. DeWire pushed for the modified barium swallow. The test determines how competent (if at all) Colin’s swallowing is and what limitations we need to apply in order to feed him safely, such as texture and how much to give him. In a “normal” medical environment, it is unlikely that we would have gotten this test performed at all, given the impending surgery.

However, Dr. DeWire felt that it would give Colin some quality of life, and we have no idea whether he will be able to swallow after surgery. On the most basic level, eating gives Colin pleasure that we have painfully denied him for months. Even if he gets a week or less of eating, this will prove to him that he can do it again and give let him experience that joy again.

We came to the test armed with a battery of foods in varying tastes and textures, including yogurt, chocolate syrup, vanilla frosting, syrup from homemade peaches (thanks, Catherine!), and homemade chicken broth. Ultimately, it was the chocolate syrup that did the trick. Colin did not approve of the barium itself, which is used in x-ray fluoroscopy to show how he is managing food.

The result: Colin is swallowing! Amazingly, the swallow reflex seems to be working pretty well. He is having more difficulty managing the food inside his mouth and manipulating his tongue effectively. For this reason, we have to stick to nectar consistency foods rather than thin liquids and give him extremely small quantities.

For days, he has been pointing at the fridge and whimpering, and now we can actually pull something out and give it to him, though he mostly wants to just open up the magic box and survey the realm of possibilities. As was the case when he was an infant, he doesn’t want specially prepared foods; he just wants what we are eating. Ironically, this is less possible now than it was when he was little.

Needless to say, Colin is getting as much chocolate pudding, syrup, etc. as he is willing to eat until he has to go under the knife again. For one thing, this serves as good practice for the coordination of eating movements. It is possible that he passed in part because we have encouraged mouth and tongue movements by giving him a spoon dipped in juice or coffee (seriously, he likes coffee!). Although this was before the swallow study, everybody agreed it was benign and introduced little if any actual fluid into his mouth.

New First Words

After coming home, buoyant from the test results, we were playing with Colin on the floor when he started making funny little sounds. We have noticed vocalizations from him more and more and have tried to encourage him to make word sounds, but for the most part we have just heard him whimpering or yelling.

For whatever reason, Colin started making roaring sounds and repeating them over and over. When I asked him to say “mama,” he seemed to surprise himself a bit when it did it! We recorded a short video of him saying “mama” and roaring a few times as well.

As expected, Colin has not given us a repeat performance and will not show off his new trick on command. It doesn’t matter, since we know he did it and was quite intentional about it. On top of the successful swallow study, it was an unbelievable new step and a huge day for Colin!

Well, it’s not worth saying anything else, so I’ll let Colin speak for himself.

 

Neurosurgery: Round Three

There is nothing casual about neurosurgery, and Colin’s third venture into the operating room is at least as anxiety provoking as the last. After the considerable improvement we have seen, it is awful to think of him losing everything he has gained. At the same time, knowing that he has regained so much underscores how important it is that he have surgery so we can attempt to cure him.

Probably the worst risk is that of a brain stem stroke, which would not only incapacitate Colin but also possibly make it impossible to give him the radiation he needs to keep the tumor from resprouting. On the MRI, the tumor has interceded between the basilar artery and the brain stem, stretching the delicate feeders. It gives me palpitations just thinking about the black lines stretched thin through the gray mass of tumor on the MRI.

The tumor remnant is not large, but it is far from insignificant. The problem is that it cups the brain stem and all of the sensitive cranial nerves in addition to the blood vessels that feed the brain stem itself. Although the best results with ependymoma come with a gross total resection, a significantly reduced remnant will greatly increase Colin’s odds, which is the entire point of the surgery.

Although we would prefer that Dr. Boop remove the whole thing, we all know that this may bring intolerable risk. We have already spoken with Dr. Merchant about adjusting the radiation according to how much, if any, tumor is left over. So far, we are still planning on staying here in Memphis for radiation, but more detailed discussions will take place once the surgery is complete.

Colin gets admitted to Le Bonheur at 3 p.m. next Tuesday. Dad and Aidan are going back home over the weekend, and Dad will return here well in time for Colin’s big date. Aside from the fact that Le Bonheur’s ICU is a terrible environment for Aidan to be hanging around in, this is a great time for him to get the Christmas gift he really wanted, a return home to be with family and friends. His real wish was to go home for good, but this is the best we can currently offer.

Aidan will be going back to his school in Danbury while he is there, which he is greatly looking forward to. He will be visiting with family and friends and hopefully getting in lots of good playing time as well as getting showered with attention.

Believing in Miracles

Looking at Colin today, his recovery is miraculous. We have repeatedly heard how unexpected his rapid improvement has been in the time since he left the hospital. It is enough to make one believe in miracles, but I have to say that I remain unconvinced.

There have been too many people who have invested an incredible amount energy in getting Colin rehabilitated to think that this hasn’t made a difference. Perhaps more importantly, Colin himself has a strong spirit that expands far beyond his rapidly strengthening little body.

I do believe that Colin has fed on all of this love and attention, and he is now able to really express himself and pay back for that affection. His recovery represents unbelievable coordination at St. Jude, not to mention the hordes of people at Westchester and NYU who have helped Colin on his journey.

Colin’s improvement is miraculous not in any mystical sense but because of the actions and commitment of thousands of people who invest their energy in seriously ill children. Some have touched his life for minutes and others for weeks and months on end. There are people who have never met him who have helped him in one way or another.

As the calendar flips closer to his next surgery, we rely on the miraculous actions of even more legions of people to help Colin pull himself out of the darkness and find the little boy who got lost in the midst of a brain tumor.