On Wednesday, Colin was scheduled to repeat the swallow study, though it was widely thought that he would likely fail. Melissa, who did the first swallow study, sensed this and asked to visit him clinically before conducting a study. She suggested that he needed at least a week before retesting.
However, we realized that the question wasn’t whether he could now competently swallow, which he certainly couldn’t, but whether he would do so quickly enough to avoid the G-tube. Subjecting him to the study now would needlessly expose Colin to radiation and put him through a process with a risk of aspiration.
Instead, we could simply decide that the G-tube would help him receive tube feedings more comfortably than the current NG-tube. The procedure to insert it is relatively simple and easily reversible. Doctors of the various disciplines agreed that Colin’s recovery of his swallowing function would take some time and that the G-tube is a good solution to help him in the meantime.
Furthermore, it is not uncommon for chemotherapy patients to require tube feedings in order to receive nutrition while feeling awful. The oncology dietician described the G-tube as an “insurance policy” to bolster Colin’s nutrition during treatment.
Colin will get the G-tube placed before starting acute in-patient rehab, though it is not clear exactly when that will be. Today, he also had the lumbar puncture (spinal tap) performed and a CT scan of his head to compare the ventricles with earlier scans.
The results of the spinal tap should be in within a few days as the fluid is tested for the presence of cancer cells. While we agree that it is important to perform the test, it’s unclear how much of an impact it can possibly have in the treatment plan, since it can only confirm the presence of the disease, not eliminate the possibility of metastasis or even suggest that.
The doctors will assess Colin’s CT scan. Clinically, he shows no signs of hydrocephalus and has actually in many ways improved since the surgery. Most dramatically, he has stopped grabbing at the back of his head. Generally speaking, he is less irritable, though he does express the desire to leave the hospital and sometimes complains about being returned to his bed.
The Head Start III chemotherapy protocol is shockingly harsh, involving the destruction of Colin’s bone marrow and replenishment through autologous stem cell recovery, meaning that they harvest his own stem cells and use them to regrow the marrow. While we recognize the need to address the metastasis, we feel that there may be other good treatment options for him that would be less toxic.
Namely, the intrathecal radioimmunotherapy program at Memorial Sloan Kettering could be quite useful as long as he does not have any chunks of tumor. We need to discuss the feasibility of reducing the size of any physical tumor in his system through chemo (this assumes that the tumor will respond to chemo, which it often doesn’t with ependymoma).
Much of our reluctance to dive into Head Start III is based on the results of work using the earlier protocols for ependymoma, which were not promising, to say the least. But if he does at least initiate Head Start (beginning the protocol does not mean that he is absolutely required to continue), he needs to begin the chemo within 42 days of the surgery.
Within that window of time, the doctors want to conduct a more definitive post-operative MRI as late as possible to minimize the effect of surgery on imaging. Blood and swelling in particular can be difficult or impossible to differentiate from disease.
Today, opthalmologists assessed Colin’s papilledema again and did not see any evidence of it, much as expected. Placing a shunt to manage hydrocephalus is a much more involved issue than the G-tube, since it can create long-term dependence and carries many more risks.
Considering the value of avoiding procedures during chemo that might disrupt the protocol is valuable, but it cannot utterly drive other decisions. The G-tube is much less onerous a device than the shunt, so it was much easier for us to opt to have that procedure performed sooner rather than later.
Not having a concrete treatment plan is both unnerving and paradoxically reassuring. The team here is interested in making the best decision for Colin, and this is not a situation where there are pat solutions. We appreciate the equivocation on the issue of metastasis as well as the consideration of smoothing the path to treatment.
One amusing effect of the ophthalmological exam was dilation, which is necessary for proper assessment. The opthalmologist taped a note to the wall indicating the application of dilation drugs so that anybody conducting a neurological exam would not become alarmed by the dilation and lack of pupilary response. Even so, Dr. Magill (rehab) became concerned and initiated an inquiry regarding the half-life of the medication used, which was longer than anybody had expected.
This incident underscores the importance of the coordination of information. With so many different practice areas involved in Colin’s care, it is impossible for all of the information to be managed efficiently. We serve as an important hub and can facilitate or hinder the process depending on what information we have.
For example, today Colin was scheduled for an upper GI study related to the placement of the G-tube. However, nobody informed us or let us know anything about the utility or requirements (i.e. sedation) of this study. When Colin was in recovery from the mild anesthesia related to the lumbar puncture, we were told that he was to wait in the day surgery area for the upper GI study. However, since we were unaware of the study or what it was used for, we did offer resistance to the idea of sticking around, especially when the day surgery nurse wanted to send us back to the general pediatric floor. His concern was that we be monitored by a team that knew us well, not one that had just met us in the short time around the procedure. Thus, we went back to the floor and missed our opportunity for the upper G.I. study.
Also, the CT scan, which we went out for not long after the spinal tap, ended up being more involved because we were taken to the wrong floor by mistake and the person who was supposed to receive us didn’t realize that we were waiting on a different floor. Because waiting is a natural part of the process, we did not question the delay in getting the CT scan. Plus, Colin had fallen asleep and was comfortably resting in Mom’s arms.
Overall, Colin continues to improve and enjoys new activities every day. He seems reluctant to initiate play with new items but can often be encouraged if somebody else uses them. He started using a shape sorter and some other toys in the play room.
The continued flat affect makes it difficult to figure out if he is actually enjoying himself, in the absence of an actual half-smile (the right side of his face doesn’t work properly). The most reliably means of communication is finger squeezes, which he administers with surprising vigor.
Colin independently turns his whole body from side to side and has started using his right hand in objection to procedures that he doesn’t like that require the restraint of his left hand. The fine motor skills are not there at all and even gross motor is not fully in play, but he can certainly wave that arm around.
Colin can also be quite fickle in his interactions with people here. He still loves Martha the best and can be coaxed to do just about anything in order to see her. Sometimes, he refuses to high-five somebody he doesn’t know well, though this is also a gesture he tends to be fairly free with.
We cannot believe what an incredible patient Colin is. He has stopped trying to remove the NG tube and even volunteers to have his mouth suctioned for excess secretions, (presumbly) knowing that it may be uncomfortable but ultimately makes him feel better. He definitely can be reasoned with in a lot of circumstances and always should be explained what is happening, as he clearly understands and benefits from communication.
Over the past several days, we have been lucky to have evening visitors to stay with Colin while the rest of us spend time together as a family. This has facilitated some firefly catching in Central Park as well as a wonderful performance for children by a New York clown/magician couple, Sammie and Tudie (their clown stage names, not their real names). The Ronald McDonald House does have some great events for the kids, and Aidan now knows some of the children from the day camp there.
Evening meals up at Ronald McDonald house have also been a good opportunity for Colin to see familiar people who want to play with him and simply spend some time together. Given his unhappiness about his incarceration here and our inability to even take him off the floor (at Maria Fareri, we were able to take him outside when he was on the general floor), this is a big boon for him.
Even with the treatment plan on hold, Colin’s progress trudges on and we are considering the decision to put him into acute in-patient rehab. The Rusk center next door offers the opportunity for him to be followed by the various practitioners here at NYU, so it is an obvious good fit. Also, the therapists who have been seeing him from there will be able to continue to work with him. However, the decision is not set in stone and we need to find out more about Blythedale and the children’s hospital in Hartford before moving him.
The questions continue, many unresolved. The current holding pattern is a busy one, with a steady traffic of practitioners at the bedside and trips around the hospital for one test or procedure or another. I am almost surprised when I hear other children of Colin’s age fuss and cry, as he is unnervingly cooperative. His complaints about going outside are almost reassuring that he still has distinct preferences to express. The unanimous consensus is that he is a better patient than most, if not all, adults. This observation has earned him many admirers here at the hospital, not the least of whom are his parents, who have watched him endure so much and who know that he has a long road yet ahead of him.