The weekend was a blur, with several visitors and the excitement of a pending move “upstairs” to the regular pediatric area. Saturday morning represented Colin’s 48-hour challenge for the drain, which he passed with flying colors. His intracranial pressure remained good during that period and he received a conditional thumbs up to leave the PICU, pending a rapid MRI.
However, the MRI did not take place until late afternoon on Saturday. This was followed shortly by the removal of the drain, which was a minor procedure performed in the room with a mild dose of fentanyl. Colin finally lost the turban/gauze chapeau that we had all become accustomed to and we could see his shaven head.
The drain represented a dangerous risk of infection and was the only thing keeping us in PICU, aside from the fact that there were no beds available on the third floor. The possibility of the move represented a drama throughout Saturday and into Sunday, but on Sunday Colin was treated like a non-ICU patient and was finally allowed to venture outside of the unit for something other than a diagnostic test or surgery!
We loaded him up in a little red wagon and toted him around outside. He looked fairly uncomfortable — still somewhat backed up despite some clearly insufficient offerings to the diaper gods. Even so, it was good to drag him into the sun, which was fortuitously unveiled for the occasion.
It turns out that he preferred a different vehicle, which was essentially the kind of molded baby seat that some grocery carts are armed with mounted low on a sturdy and fairly maneuverable cart. The baby faces the operator and there is a large net bag hanging from the handles. We loaded that with an approximately Colin-sized monkey that has been treated for a similar ailment and sports dressings accordingly. The head gauze is not as expertly applied as it is from the hospital staff (this is entirely Mom’s fault), but it serves the purpose.
Colin got to venture into the famous third floor fire truck, which has an area that is accessible even by wheelchair. While he enjoyed all of this, he was not delighted as we had hoped. Physically, he looks well and has excellent color. His appetite, combined with the steroids, have added some bulk to his midsection (he has gained 1.1 kilos during the course of his stay). He looks like a frog, legs splaying out from a bloated middle.
We have wondered how much of Colin’s voracious appetite is related to the steroids and how much to boredom. Perhaps this is some kind of projection, but it is strange to watch him eat so compulsively, especially when he is watching sports (he does love baseball!). One of the nurses said she has never seen a kid eat during the course of a procedure (the removal of a drain). He just sat there blithely crunching away on potato chips. (It’s for the salt, folks.)
We assume that the fluid retention/weight gain from the steroids, notorious digestive setbacks, lack of physical activity and the discomfort related to the various procedures have taken their toll on Colin’s spirits. Furthermore, it is difficult at best to get restful sleep in the hospital, especially in the ICU. Our hope is that we are observing environmental effects that will reverse at least to some extent by a trip home. His passion for taking trips in his new ride seem to be related to efforts to get Dad to spring him from the joint.
Colin’s hospital-constrained freedom does include the removal of the last peripheral IV (the one in the life port is available for the periodic infusion of IV medications and blood draws). It is nice to see his limbs free, even if they do show some signs of wear and tear from the various IV access points. The bruising on his little wrists is sad to see, though the result of a clinical necessity.
On Friday, Colin did some physical therapy, which was primarily to get him accustomed to applying weight to his various limbs (upper and lower) and shifting weight between them, with the idea toward walking again. This is something we can continue at home prior to the next surgery.
So as not to allow the ample discussions of Colin’s GI complaints to dissipate unresolved, here is the summary for the previous three days: Friday was extremely stressful, with anxiety over the drum-tight tension in his belly culminating in another enema. On Saturday, the doctors elected to prescribe Mirolax, which did not have any sort of effect until later in the day. The entire time, he has been taking Colace stool softener. The frustration of giving him so many medications to help in this arena is exceeded only by the discomfort of feeling (or even being in the presence of) his belly.
However, Sunday we had a breakthrough with two fairly modest creative works followed by a third voluminous one immediately following his first trip outside in the red plastic wagon. Although medically facilitated, these were at least not enema-induced. Looking relaxed and comfortable for once, he almost promptly fell asleep.
With the question of whether we would ever make it to the third floor hanging in the balance, we realized that our biggest concern was returning him to a healthier and more natural environment. Obviously, this will be beneficial for the whole family and it will provide a better test to see whether his apparent blueness is more situational or (possibly) neurological.
Also, we have been discussing our expectations and goals for the upcoming surgery. We feel that the group in Denver, which neither of the neurosurgeons and the chief of oncology do not have a particular relationship with, could potentially add valuable information to the case.
There are relatively few ependymoma cases each year, and even fewer that are extensive like Colin’s. That means that even a significant center of treatment and research, such as St. Jude, may not get a case like this in the course of a year. Dr. Tobias did not, in fact, see anything like it during his year there in Memphis.
On Friday, Mom collected all of Colin’s relevant medical records from the labyrinthine corridors of the Westchester Medical Center. The slides were the creepiest, packaged in a sealed padded envelope. We’re not even sure how they reproduce them, so there is a feeling from the solidity of the package that one holds the very culprit in one’s hands. The fear of facing the enemy has been too great for us to consider unsealing the envelope. If we do send these to Denver (it’s not clear to us whether they will be useful or desirable), we may not resist the temptation to take a peek.
All of the imaging (MRI and CT scan) is presented on a nicely labeled CD. It seems quite sterile and innocuous, but we know how awful the images inside are. Yet the images are the reality, or at least the reality we faced at the moments prior to surgery. They will perform a new MRI right before the next and perhaps we will again sit down with the surgeons and squint at the vague splotches of tumor that look a lot like the vague splotches of things that are supposed to be there.
Dr. Tobias mentioned that the tumor can change between surgeries, starved to some extent of its blood supply. Dr. Jayabose has told us that the same is true for chemotherapy. We can only hope that the effects of the two will make the third surgery, which must be quite aggressive to give Colin a reasonable prognosis, a degree safer.
It is all very nerve wracking. The risks the the surgery are associated with the basic unconscious reflexes of living. As we look at Colin’s mood, it also is apparent that there are other neurological risks that we face, both with treatment and the progression of the tumor. Scanning through some of the academic literature, one article from the team at St. Jude notes survival rates as differentiated by the length of time to treatment. Longer delays correlate to poorer outcomes, and one cause of such delays is “parental indecision.”
We cannot afford to give that risk to Colin. He certainly deserves better, though he also deserves to be given every chance to have a childhood in the midst of this agonizing process. We continue to seek that balance, just as we feed off of the immense support we have received from all quarters. Thank you all for both the vocal and quiet well wishing. Thanks also to all of the people who do not know us and have never even met our family.
On Tuesday morning, we plan on having a conference with the surgeons and oncologist. There, we will plot the treatment plan, schedule the next surgery, and strategize the parameters for Colin’s return home. Here’s to looking at the ground we are standing on rather than the very hazy horizon: Colin is doing well and we are all looking forward to bringing him back to where he belongs.