Colin has been at the center of a whirlwind of activity. He has continued to improve following the installation of the shunt. However, on Thursday morning, we noticed that his heartrate was unusually low (in the 50s). More alarmingly, it wouldn’t budge even with stimulation, such as moving, PT, suctioning, etc.
Even though there was a full MRI scheduled for the afternoon, he went for a stat CT scan in the morning. The imaging showed that his ventricles have decreased, which means that the shunt is working. Also, the pseudomeningocele by the old incision has not collected additional fluid, indicating that there is not excessive pressure in his head.
They also ordered up an EKG, which was performed but not interpreted. The general assumption was that there really was nothing wrong with his heart; there hasn’t been so far, and he’s had a number of EKGs before. Endocrinology weighed in that there is nothing under their purview that would cause the low and unresponsive heart rate.
Instead, we got a lot of looks indicating that the only logical cause of the change was a change in the tumor. This added extra weight to the already considerable anxiety about his MRI. The 3 pm MRI turned into a 5 pm MRI that was also late. With one thing and another, he wasn’t out of the test until after 7 pm.
The neurosurgery resident bopped in with a spring to his step. “The MRI looks good.”
On Friday morning, we heard even more good news: the area of suspected disease in the cervical spine appeared smaller on the imaging. If nothing else, this means that there was not “explosive” spread of disease. The news was a tremendous relief and served as permission to Mom to take Aidan on a Ronald McDonald House outing to New York Trapeze School.
As it turns out, this was a great adventure for Mom, but for Aidan… not so much. He ended up being the first one up the ladder. He bravely made his way to the top, then clung to the metal struts at the top and gradually melted into tears. They lowered him gently to the net and congratulated his bravery, but he was not anxious to make a return trip.
Aidan’s emotional collapse was pathetic, adorable, and genuine. At least in this one thing he had the ability to say no, succumb to fear, and descend into safety. In other areas, he has utterly lost this power.
For Aidan, the latest demonstration of his impotence is our decision to transfer Colin’s care to St. Jude Children’s Research Hospital in Memphis. While we had come to the realization that we needed to explore treatment options beyond NYU, we had not seriously considered taking him to Memphis. It seemed too far and the chemo too vague a treatment to travel such a far distance to pursue. From what we gathered, our next step had to be chemo, yet there is no clear idea on what protocol to use or what “works.”
Even so, we felt it important to continue our communication with the team there. After all, even if it wasn’t right to go there now, it might be at some point. They asked if we would be available to speak with the oncologist, who opined that he was not convinced of the metastasis, based on the scans. Also, given that the delay in treatment resulted from complications unrelated to his condition (Colin passed the deadline for consideration in their protocol), they would be willing to make an exception for him and extended the offer for treatment.
The treatment there will require a minimum of four months of chemo, possibly more. How the plan progresses depends on how he does, but the important point is that they have a clear idea of what to do now and how we should act depending on how the tumor responds to treatment.
There is no doubt that St. Jude is the major center for ependymoma here in United States, probably the world. Whereas we are unusual in the RMDH here (Dad described meeting another ependymoma parent in the sea of neuroblastoma as “aliens” meeting unexpectedly), we will find other ependymoma parents in Memphis. The aliens will be traveling to Mars, where Martian doctors know how to handle their specific medical problems.
Perhaps one of the most compelling aspects medically is that the doctors there do not believe that harsher chemo is more useful for patients like Colin and have designed a regimen that is better tolerated. This is really intended to help children get old enough to better withstand radiation, not avoid it altogether.
All of this appeals to us intellectually, based on the research we have done on ependymoma and the relative success of various treatments. We wouldn’t be comfortable not doing radiation at all, and embarking on a difficult chemo course would only serve to add to his travails rather than be medically useful.
Given the focus of research (specific chemo protocols, trial options), we did not sufficiently appreciate the totality of what St. Jude offers. The facilities are quite beautiful and they offer free housing to families. The cost of travel is also included, with certain restrictions. Although this was not the basis for our decision, it is certainly all helpful in allowing us to create a more normal environment for our family while we are in Memphis.
Although we will be beyond the reach of our support network, we will be in good hands. Also, we will certainly need help when we return.
Before then, we just need to get Colin down to Memphis. The coordinator said that we would fly once Colin is up for a commercial flight, but the doctors here would like to get him down as soon as possible. We’re not really sure what this all entails, but Colin is certainly improving quickly and may even be up for a commercial flight relatively soon.
He no longer requires an IV for medication (they do use it for blood draws) since everything he gets can be administered orally, and he is back up to his normal rate for feeds. Although he is on continuous feeds now, they will start transitioning him to intermittent, which would make the trip easier to manage logistically. They do make backpack pumps where he could receive nutrition during the entirety of the trip, but it would be easier to maneuver him (and probably more comfortable on his end) if his stomach got a rest.
The decision to go to Memphis felt very much like the decision to come to NYU. Although it was sudden, it was precipitated by a feeling that change was impending and necessary but without a clear sense of what to do. Similarly, we were leaning toward a particular conclusion, in this case Memorial Sloan Kettering and at that time Dana Farber, but were swayed by confidence and expertise.
Of course, we will miss all the new friends we made here in New York. The staff here has been wonderful, understanding and caring. We will also miss the staff and other families from RMDH.
Colin and Aidan will both meet new friendly faces and make new friends. There is a Montessori school close to the hospital and we hope that they will be able to accommodate Aidan there, though their school year begins on Monday. Otherwise, we will work something out, but it is painful to see his world so thoroughly disrupted. We have told him that his brother is the one who got cancer, but cancer affects the entire family.
As we rush about organizing things and making arrangements, making sure paperwork is in order and medical details will be attended to, Aidan is too often brushed aside. Sometimes, he obediently climbs up the ladder, but other times he looks down and feels helpless. Watching him struggle is painful, but it is a good and necessary pain because Aidan’s emotion is genuine. It would be worse if we never saw that side of him, since it would be there even if hidden in the umber of his good nature. It is really what we all feel in this situation but expressed more purely, less warped by the demands and obligations of our adult experience.
Somebody asked why St. Jude is located in Memphis. I can only turn to Paul Simon for the answer:
In Graceland, in Graceland
I’m going to Graceland
For reasons I cannot explain
There’s some part of me wants to see Graceland
And I may be obliged to defend
Every love, every ending
Or maybe there’s no obligations now
Maybe I’ve a reason to believe
We all will be received
In Graceland