Colin has made some big leaps ahead, and we can now really see the strength of his determination. He vehemently resists activities and treatments that he does not like and resents being subjected to uncomfortable procedures.
Unfortunately, we had to put him through two of those today. The first was the upper GI study, essentially a repeat of the one that had been performed in New York before the G-tube placement and Nissen fundoplication. This time, the purpose was to determine the status of the fundoplication, which appeared to be fine.
The radiologist determined that it was in place and normal, and she didn’t detect any reflux during the time of the test. Of course, much of this means nothing, but we are certain that the Nissen is intact and that Colin is simply vomiting through it.
The last time Colin went through the test, he didn’t complain much about it, but this time he resisted being placed on the x-ray table and being turned this way and that. He is compliant once he settles in, but he has to hold somebody’s hand and get physical reassurance, which is easy enough to do.
Colin was quite upset when he could only select one of the available rewards. He did really earn it, but their stocks had dwindled down. He rolled out with a new little car.
All of this vim and vigor is good news, and it serves as a reminder that we have to tell him what we are going to do and ask him to help rather than impose everything on him. For example, during the day, he wears a humid-vent on his trach. It is much easier to ask him to tilt his head up so we can secure it rather than pushing him around. People are often surprised that he happily complies with the request.
Colin enjoyed the vengeance of “suctioning” his nurse today with an oral suction catheter (clean, never used on anybody). This is now among his playthings. Medical play is important for children and is a wonderful mechanism for them to gain some control in this environment.
The second procedure, which was shorter but much worse, was a scoping by the ENT to see how his vocal cords are. This is the first time that Dr. Thompson has himself done it, and we were grateful for the opportunity for him to look himself. He reported that Colin’s right vocal cord is totally paralyzed still (but expects it to recover over the next two years). The left, however, is more than compensating for the deficits on the right. He also warned us that this is likely to lessen through the action of vincristine, one of the drugs Colin is taking.
The nerves in this region are amazingly robust, and the body will eventually recover. Fortunately, we have the tools to support Colin’s health in the meantime.
We are obviously anxious to get the trach out as soon as possible, but with better management, it shouldn’t be as scary as it has been. Also, we have better strategies and a better understanding of the secretions and Colin’s ability to manage them.
As for the GI consultation, the doctor suggested that Colin have a G-J tube inserted to replace his current G-tube. This is a simple procedure done through fluoroscopy and can be done here. We didn’t realize that this tube provides two different ports, one into the stomach and one that wends into the jejeunum. This means that we could theoretically start feeding Colin in the stomach even with the J-tube. This also means that our assumptions about the G-J tube being a complete impediment to switching to solid feeds were incorrect.
With so many different things to research and understand, it is not surprising that we would get things wrong, but it is disappointing. It is difficult at best to keep track of all of the various issues, but this underscores how impossible it is to have a good understanding of the totality.
We are also changing Colin’s anti-emetic strategy and will be operating under the assumption that he suffers from nausea even when he is finished with chemo. We are reducing the Benadryl dose to make him less sleepy when he gets it so he can continue his therapies. The ativan dose for breakthrough nausea is also being lowered so we are less reluctant to order it.
Also, Colin is persistently complaining of jaw pain, which may be TMJ. He now has an order for IV morphine at very low dose intended to treat this very quickly. He can also receive morphine by mouth, which we may continue to do for other forms of pain.
Overall, the medications are not knocking him out any more, which is good for his therapies. Better management of his symptoms keeps him functional, and we still feel that PT is the most important vector for Colin’s improvement. For his part, he is participating with relish.
Today, Colin tried to walk and support himself on a table (he can’t quite do this reliably) and also wanted to walk across the room. His left leg is capable but his right is not and we have no idea what his balance is like. The recovery of strength in his legs and trunk is amazing.
Generally, he holds his head straight unless he is quite tired, in which case he lists along his entire body, not just the head. This is a stark contrast with a few weeks ago, when we were constantly pushing his planetoid head up with our fingers as he sat up.
Colin is sitting up independently for baths and other activities. He can grab and manipulate toys and, much to Aidan’s chagrin, pull his brother’s hair. Otherwise, Aidan loves the attention when Colin swats at his face or picks his nose (PT, or “picking therapy”).
Many of the ladies around here get blown kisses, and Colin makes audible kissing sounds. He loves greeting people and is happy to say thank you and please — his lips move but there is no sound.
Colin’s improvements have brightened everybody’s spirits and Aidan seems less anxious. We can only hope that the tumor remnant is shrinking with chemo. The last thing he needs is more surgery, especially when we are seeing such wonderful progress.
The doctors have all left for a big meeting of the Children’s Oncology Group (COG). Dr. Gajjar is taking over the brain tumor studies for COG, which is one reason the meeting is mandatory for him. Dr. DeWire has also gone with him, so we are bereft of our main doctors until next week. We are not alone in this predicament, as we had heard of impending physician absences from parents at other institutions.
St. Jude is closing in on research on ependymoma that will bring more information on the different forms. They are still trying to get tumor samples from NYU that will help analyze Colin’s tumor and both give us information and contribute to future understanding of this disease.
Colin will be inpatient at least through next weekend when he gets the next three chemo drugs. We cannot be discharged until they find a different agency to send a properly qualified nurse. Also, the home health equipment agency is revising our equipment.
As we inch along in some respects, Colin is progressing swimmingly. He is getting much more aware of his surroundings and situation. When bored, he jiggles one of his legs and impatiently pushes the button that opens his DVD player. He demands one toy or another in the play room, often “browsing” through the various selections in order to find just what he likes. This short attention span seems to be more from an effort to play with everything he can get his hands on than inattention.
The more we see Colin’s personality, the more easily he grabs the hearts of the staff here. He is both a guy’s guy, high-fiving and guffawing with an America’s Funniest Home Videos sense of humor at mock injuries, and a shameless flirt with the ladies.
So often, one person or another walks in and comments at how Colin looks like a different child from the one who first arrived in Memphis on an air ambulance. His ballooned chin has deflated significantly under the steroid taper, and he physically holds himself much more competently. He moves with purpose and intention and more often than expected can achieve his desired goal.
Everybody says that children are resilient and bounce back from adversity, yet we had not seen a real upswing for Colin in so long that we had become accustomed to the idea that his recovery would end up being gradual. There is nothing predictable or reliable about this process, and we continue to be humbled by the necessity of submitting to the universe.