Tomorrow, we plan on bringing Colin home again. After much planning and deliberation, St. Jude found another home health care agency to provide nighttime nursing. We met with three of the staff, including one of the nurses who would be taking care of Colin.
Following chemo, he was especially weak and tired, but every day he has improved. He is also suffering negligible amounts of pain and no evident nausea. On Thursday, he sat up quite a bit of the day, did PT and OT, and played in the play room. In bed, he rolled onto his stomach and tried to push himself onto his knees!
Unfortunately, Colin has also been plagued with diarrhea which only abated when we cut his feeds significantly. This is presumably the result of methotrexate, which often causes mucositis. Given his predisposition for diarrhea, this wasn’t very surprising but was also very frustrating and threw off his electrolyte balance.
As we have gradually increased the rate of his feeds, his diarrhea has not returned and, though his GI tract is not working perfectly, it has improved enough for us to see the light at the end of the tunnel; we did not want to bring him home with uncontrolled diarrhea.
With big improvements all around, we were ready to bring Colin home on Thursday but discovered that one of the nurses from the home health agency, the one who visited in person, resigned from the company. Oops!
The best laid plans of mice and men…
Although we are a bit frazzled from our earlier experience with having Colin home, we also feel that we understand his medical needs much better than we did a month ago. The home health agency will have their act together on Monday, and this represents a prime opportunity to bring Colin home before he becomes neutropenic and (likely) makes another trip here for a neutropenic fever.
Thus, we are asking for an early discharge tomorrow to get him settled. The boys will enjoy being together and Aidan will get a respite from visiting St. Jude.
We also continue to discuss the plans to go to Jacksonville. They are only now about to send the first child who is being treated there under this protocol. It is a near certainty that Colin is the most complicated child they will have encountered, as we are queued up to be either No. 7 or 8 (some of this seems to depend on whether one of the children needs the radiation or not; not all automatically have radiation, and it depends on the diagnosis and other factors).
Fortunately, St. Jude has hired a nurse practitioner to act as coordinator, and she will be coming to Memphis to learn the “St. Jude way.” We will get a chance to meet her and have her get to know Colin who, even as he improves, continues to be “our complicated boy.”
We sense that Colin’s matrix of issues will get less complicated as the weeks roll by. Already, his level of activity has improved his lung function and kept him off oxygen entirely for days. Overall, Colin is much stronger and more alert, even if he has been weakened by chemo (one of the side effects is peripheral neuropathy, which definitely can make the limbs weak temporarily).
All of these factors make us much more confident in our ability to manage him comfortably (for him) at home. Even so, the perils of life with a trach continue, and nighttime does make us nervous.
We realize that discharge from St. Jude is not like typical discharge. Here, we are expected to bring Colin back to the hospital on a daily or near-daily basis for appointments and/or treatment. He will receive more chemo on Saturday (an IV push of vincristine) and has daily rehab-related and medical appointments.
When he comes home, we will administer a shot of G-CSF every day. This is a rescue drug that helps stimulate the bone marrow to produce more blood cells. The protocol calls for an IV administration every day, but the shot is easy enough to give and saves Colin and us from an hour sitting in the med room.
On Monday, Colin is scheduled to have his G-J tube replaced with a shorter one. We surmise that his counts will be too low for them to want to follow through with it, but they prefer to keep him in line for it.
We also discovered that Colin’s next big milestone is the MRI that takes place on the 22nd. Dr. DeWire, Colin’s (lady) fellow, is unguardedly excited about this, as he is clinically doing so well. However, upon cross examination, she said that for brain tumors, there is no special correlation between clinical performance and tumor progression. This would be more common with metastatic disease.
Therefore, Dr. DeWire’s optimism may be misplaced; only the MRI will tell us what we need to know, which is whether the chemo is working or at least not failing. That said, while Colin’s spine looks clean in scans, with a moderately aggressive grade of tumor, the possibility of metastasis looms darkly.
One realizes that there are conversations that the doctors have outside of our earshot that they do not freely share with us. This doesn’t mean that they won’t answer a pointed question, but sometimes it’s difficult to ascertain which questions to ask to tease out the difficult responses.
Some of this is fairly moot, as Colin’s current treatment plan is well understood for the moment. Yet we still want to understand his disease better, and not in the general sense of aggregated statistics on ependymoma. Much of what we discover here that is valuable relates to the broad institutional experience with ependymoma.
Colin is very lucky in many regards. While treatment for his cancer is far from a slam dunk, it no longer resides in the realm of extreme improbability. We have always appreciated this from a theoretical sense, but we continue to observe the drama of cancer treatment swirl around us.
There is a small interfaith chapel on the first floor that hosts a prayer binder. Here, people write many things, most of them very predictable. The most simple prayers include a name and an affliction, not necessarily related to cancer. Jane Doe: broken neck. Julie Schmo: alcoholism.
Some of the prayers are in other languages, but the content is clear enough despite the language barrier. We anecdotally hear of other patients through the doctors, stripped of identifying information. However, here in the pages of the prayer book, their stories gain another measure of life.
One mother asks for the salvation of her child but, more touchingly, to be a better person. In an immature hand, there is a painstakingly scribed thank-you note for letting a certain child into heaven. There are more thanks given for clean scans, and also more desperate notes decrying a lost baby or another one that is losing its battle.
Hope is ever present here, but there are still facts and medical realities that, even when not definitive, are bad omens. In particular, we have befriended a lovely young lady who is always cheerful and asks fondly after Colin. This last week has been tough for her on several planes, but in particular she let us know that she heard not-good news from her clinic.
We don’t need to know the specifics of her case to get the drift and feel her desperation. Despite her spirit and the loving and constant support of her mother, this new information is a blow. It is hard to smile and tell her encouragingly, “You have to push through,” but it is the closest thing to kindness, honesty and compassion that I know of.
Again, the specifics of her case are irrelevant because the sentiment remains the same. Knowledge is limited and you can beat the odds. The prevailing sense is that, without will and conviction, it is impossible to do so. Thus, one needs to be encouraging and not dour yet also acknowledge the difficulty of the moment. It’s okay to feel the desperation, if only as a blip in the continuum of hope and optimism that has surely carried her so far so well.
There is a teen art gallery that recently celebrating a new reveal that included a piece from our friend. It is a simple painting, a clear and bright rainbow, and a meticulously decorated pale pink butterfly in one corner.
I imagine her passing by her own art in that well worn hallway. On some days (recent ones perhaps), it may glare at her with painful irony. On most, it is a beacon: “This is why I am here, and this will carry me forward.”