We have finally figured out an enormously important piece of Colin’s complicated oncological puzzle. Now that the doctors here believe that his tumor has not metastasized, we can look at specific treatment plans. Here, they are recommending that we go straight to radiation as soon as possibly, ideally proton therapy.
Mass General received Colin’s pathology slides and we have gone through the process of making him a patient there. This means that they can see his case on Wednesday. Furthermore, they will by then have the latest scans in hand. This is tremendously good news but tempered by the fact that we may not end up going with that plan.
St. Jude still recommends going through chemo (and possibly second look surgery if the chemo does not take care of the tumor) before radiation. Although St. Jude notoriously favors radiation over chemo for these tumors, Colin’s age does play a role in the recommendation. Specifically for patients under three, who are more acutely sensitive to the effects of radiation, they say that it is important for the radiation to be as limited as possible (in order to reduce injury). Even a small tumor load such as his adds extra volume and also increases the risk of recurrence, in their opinion.
Interestingly, the Head Start event we participated in did instill in us the fear of God regarding radiation. While we were elated at the idea that we could avoid the chemo altogether, we also understand the St. Jude strategy. The older Colin gets, the less impact the radiation will have, bearing in mind that radiation is ultimately regarded as the cure (just not while there is any detectable disease).
For a moment, it seemed that our family’s journey through Colin’s treatment might be shorter than we had expected. However, we are unwilling to take the short-term gain of staying closer to home and being done with the primary treatment for Colin’s cancer but ultimately suffer long-term losses (recurrence/injury).
After all, the discovery that Colin’s tumor is localized means that his overall prognosis is much better. This underscores the importance of the complete removal of the tumor. It is possible that we will not have to resort to another surgery. His tumor is classified as the most aggressive type, so it is more likely to respond to chemo.
All of this remains to be seen, but we are again focused on doing what is necessary to get Colin ready to travel. Even if we went with the radiation-only strategy, we would ultimately have to transport him somewhere for treatment.
Today, he had his audiology test. This was both a test of his hearing and an exercise in his stamina to travel. The left ear works fine but the results for the right ear were “inconclusive.” We pretty much know that the ear doesn’t work, but perhaps there is a slim chance of some functionality.
The trip to the audiology test took place in a wheelchair (on Mom’s lap) and resulted in a journey through arcane, non-public areas of the hospital to a connected building. The appointment took place in a regular office visited by normal people off the street. It was strange and disorienting to be wheeled in there with a limp, bandaged child in a hospital gown.
There was a mix-up with transport that resulted in a wait that was too long for comfort, especially given the fact that Colin’s diarrhea is still chugging along. It was the knowledge that every minute that he sat in a dirty diaper attenuated his diaper rash that inspired Mom to try to wheel out of the office without the help of transport. This time (the first time was following a CT scan), Mom remembered to stuff Colin’s chart in the back of the wheelchair.
The staff started spouting some kind of rules about not being able to leave unescorted, which was sharply met with declarations about the fact that Colin has diarrhea from C. Diff and he is on isolation and they really don’t want him near the other patients in the office. This pretty much cleared the area and silenced any objections. Fortunately for them, the woman from transport arrived in the nick time, apologizing about bad orders that had sent her to a locked office.
The woman from transport was quite sweet and expedited the return “home,” but the entire experience underscored the difficulties of taking Colin out of an environment where details such as his tush can be attended to properly. Sitting up (more or less) for that amount of time constituted a big postural change for Colin, but we also got him sitting up in bed several times in order to strengthen his body and particularly his neck.
Physical therapy is crucial for Colin for his overall recovery, but it will also help prepare him for the rigors of travel, especially if the goal is to get him on a commercial flight. Doing so exposes him to a world of pathogens. Any sort of movement is going to be quite taxing for him, but it is the necessary next step. Taking care of the diaper rash once and for all will be tremendously helpful, since it won’t be so painful for him to sit squarely on his bottom.
To that end (so to speak!), he is receiving as much aggressive oxygen treatment (dry blow-by) as possible. We have switched from using wipes to washing the area with water from a peri-bottle and daubing off any remaining water. The Levy Butt Paste is used for times when we think that he may end up not getting cleaned up immediately, such as during the night.
Fortunately, the offending bodily function has been neither so frequent nor so profuse as to exacerbate the problem, and long gaps in activity have promoted healing. Today, Colin switched from Pediasure to a formula that is more nutritionally dense. Although the pediatricians feared that it might incite diarrhea independently, it certainly hasn’t made it worse and possibly reduced the frequency.
It does seem like we could run on at the mouth (har-har) forever about Colin’s diarrhea, but it is a serious issue because of the risk of infection from the open wounds, and it is a common problem for children on chemotherapy. We realize that we have gotten a glimpse at what the future may hold with even a moderate chemo regimen. Of course, there is much more than diaper rash that awaits.
We usually wait several days and consolidate a period of equivocating, deliberating, waiting, diagnosing and speculating into a single update. The recent spurt of posts may needlessly draw Colin’s supporters into the unpredictable drama of our decision making, but they are an honest representation of the questions we constantly ask and answer.