Colin has done well through the methotrexate. They have been monitoring his blood levels and he has been clearing the chemical effectively, no doubt facilitated by the tremendous amount of urine output. It’s a good thing his kidneys are working well!
This morning, Colin started receiving leucovorin, the rescue drug for methotrexate. This is administered to protect his organs. Over time, they will also look for changes in his brain, since methotrexate is also neurotoxic.
One of the purposes of the constant monitoring of his blood levels is to understand how he metabolizes methotrexate; this affects both the leucovorin dosing and possible adjustments in subsequent courses. Children have even greater variability in clearance of these chemotherapy drugs, so it is important for them both to keep an eye on it and to understand it better and improve future treatments for other children.
Colin has been suffering from apparent headaches which are well controlled with Tylenol. This may be our last hurrah with Tylenol for a while; once his white blood cell counts are down, he will no longer be able to take it, since the Tylenol could mask a fever, an important sign of infection during neutropenia. Morphine becomes the pain management drug of choice at that point.
The myelosuppressive drugs begin on Saturday (two on Saturday, one on Sunday). Until then, we are looking forward to Colin perking up and working on PT and other rehab activities. Now that the trach is in place and healed, he has regular “play dates” with Kerri, the physical therapist.
This afternoon, the ENT resident came by and removed the sutures holding in Colin’s trach and then inserted a fresh one. This process created a tremendous flood of gooey secretions that were probably held above the cuff of the trach. This cuff can be inflated with air but was empty. Even empty, it sticks out somewhat and can hold back secretions, especially when they are as viscous as they were in Colin’s case.
The bad part of this was the obvious discomfort for Colin in handling the sudden flood, which he basically shot out of the trach stoma with strong coughs. The good part is that it forced him to improve his trach coughing skills. He now effectively coughs and clears quite a bit of goo.
The new trach is a different style called “tight to shaft.” This means that the cuff is integrated into the shaft of the trach, so it doesn’t protrude much at all. While the original trach acted as a pseudo-cuff, even when uninflated, this one does not hold back secretions at all unless the cuff is filled (this kind uses sterile water rather than air).
This means that Colin is having to actively cough much more, but he is also learning how to clear the trach. If it is too much for him to manage, we can simply fill the cuff with a specified amount of water and it will hold back those secretions. These can be removed by deep suctioning through his mouth. Hopefully, he will be able to swallow again himself and this won’t be necessary.
The chemo drugs tend to make Colin salivate quite a bit because of the nausea (sometimes, it seems like we could suction him for hours without taking a break at all). Therefore, we will have to monitor him, but the trach gives us additional management options that keep his lungs safer.
We are having to learn how to maintain the trach and all of Colin’s new appliances. There is a person who trains caregivers on using the feed pump. We already have our own pump with a backpack so Colin can be on the go. However, one of the nutritionists stopped by today and switched Colin to small bolus feeds. Instead of running the feed through the pump, we pour it into a big plastic syringe and let gravity fill his belly.
Colin thought this was very funny! We tried it for the first time this afternoon and told Colin this was his dinner. It was nice to see a smile on his face, partly after enduring much agony through both the replacement of the trach (bear in mind this involved the removal of sutures plus the trach switch) and reaccessing of his port.
They change the needle on Colin’s port once a week, on Mondays. The dressing is reapplied several times during the course of the week. The needle switch has been an enormous ordeal since the port first went in. Last week, it required the interventional radiologist to come in after hours; this week, the nurse struggled with it again. This time, she used a longer needle and packed the gap with gauze, since the port is so deep that even a one-inch needle (typically they use 3/4-inch) ends up flush to his skin and is quite irritating. The wings of the last needle (there are plastic wings that secure the needle against the skin) from NYU dug into his flesh and left marks that are still healing.
Today, I found out that the nurse can put in a standing order for the interventional radiologist to always place Colin’s needle, as long as we do the switch during normal working hours. We will do this and switch from chloro-prep, which has alcohol, to betadyne. The chloro-prep seems to be irritating his skin and the nurse had to leave a patch out of the dressing in order to let it heal.
Fortunately, we don’t have to deal with the needles at all, but it is agonizing to watch Colin suffer through this every week. He gets quite upset about of whole thing, more so than about any other part of the ordeal. Although the surgeons were quite pleased with the placement of the port, its location under fat and muscle makes it much more difficult to access. They should probably talk to the nurses about what makes for a good port placement!
Colin’s reward for all of this fussing was a trip outside. He got to point to whatever direction he wanted to venture in. For a while, we sat and he looked at the clouds in the sky and the trees. St. Jude is located in the midst of urban blight, but the campus itself is lovely and well kept. There are plenty of flowers and trees, everything in neatly manicured beds.
There is a grounds project installing new “In Honor Of” stones in the walkways near the entrance. These are dedicated to patients (survivors and fallen warriors alike, though usually it’s hard to tell which they are by the inscription), staff, or whatever else people can say concisely.
Today, we discovered that the plan is to get Colin “home” as soon as possible after Labor Day. Given that he will be undergoing fairly rigorous chemo over the weekend, it’s unknown how long it will be until he can leave the hospital. Also, we all have to feel comfortable with our ability to care for Colin.
It’s a fairly scary prospect, but we are practicing and learning all the time. Both of us have to get checked out on every caregiving skill, including CPR, before he leaves. The CPR training is mandated by the trach and is a good idea anyway. One thing we learned at the PICU in Westchester was that many of the parents whose children survived their initial traumas (whether medical or accident related) had performed CPR.
Colin’s care is especially intense at the moment, given the chemo — lots and lots of diapers and serious concern about mucositis and skin breakdown from the methotrexate. Oral care that is normally just a part of daily hygiene becomes heightened in importance and one doesn’t want to skip doing it. All of the little things add up.
By the time Colin goes home, he will be receiving a normal amount of fluid and will probably have a weakened immune system but will otherwise be relatively normal. The steroid dosing continues to taper and he should be ‘roid-free when he is discharged.
Outside of the hospital grounds, Aidan had a good first day of school. His assignment for the week is to make a new friend every day. Between this and generally good and helpful behavior, he will earn a new Nintendo DS game at the end of the week. All of this will hopefully help quell his anxiety about being the new kid and, thus, an abject freak.
Dad’s birthday yesterday was not “normal” but not without festivities. We managed to procure a mediocre (tolerable cake, nasty frosting) but nice looking cake adorned with Oreos (Aidan picked it, if you couldn’t already guess) and ordered Indian take-out. The hardest part was eating in front of Colin, who is still upset about losing his noshing privileges.
Even without Colin at home, managing life at Target House and the hospital is much easier than it has been at either previous facility, with one exception. We, and especially Colin, miss our friends and family. In addition to losing the direct support, we all are isolated here in the world of St. Jude.
It is a wonderful world, but it is a surreal one for us. We look forward to making new friends here and returning to our old ones as Colin passes from one phase of his treatment to another. There is a separate anxiety about leaving active treatment and being left alone with Colin’s brain, with or without tumor. As always, we have to live in the now and appreciate it for what it is: both boys are doing well and things are looking up.