Today, among other things, the family went off to a Ronald McDonald House outing for GiantKids (children with cancer). The event took place at Camp Kiwi, which also happens to be close to home and provided an opportunity for Dad and Aidan to crash at home for the night.
Much of the focus of these types of activities and groups is for children to be children, even if they happen to be children with cancer. They have every reason to enjoy their lives and continue to live positively in the moment, even (especially) when facing arduous treatments.
We have always valued Colin’s quality of life very highly and weigh his concerns as a child heavily in our judgement of the best treatment. We are very fortunate that there is hope for a cure for Colin. The surgery here was key in providing him with a chance.
However, it is impossible to not realize that cancer is scary because it is so often fatal, and in a statistical sense, Colin’s prognosis is not great. This is a tough cancer to permanently conquer in the best of cases because of the prevalence of recurrence, and his age, the extent of the tumor, and the possible metastasis add to the difficulties.
To know these facts and live with them is not the same as functioning without hope, but it would be foolish to ignore the possibility that we could subject Colin to treatments that would ultimately not serve him well. In the quest for formulating a treatment plan for him, we continue to consider whether we are pursuing the right path without adequately attending to alternatives.
That said, all of these efforts may come to a grim conclusion. With so much focus on the treatment plan and short-term decisions related to the G-tube, it is easy to push aside thoughts of a relentless progression of the disease.
When we were at Maria Fareri, Dr. Tobias mentioned that in his conversations with the neurosurgeons at St. Jude’s, they mentioned that they had one recent young patient with an extensive ependymoma who had a complete resection but suffered a brain stem stroke and then a recurrence of the disease.
Through an ependymoma parents newsgroup, we found out that one of the parents lost their son, a three-year-old boy, last week. It appears that this child was the boy at St. Jude’s who suffered the stroke. This family’s tragic story is a gripping reminder of the realities of this disease and the choices that we face as parents.
Our comments about their plight are no judgment, as their story is different from ours in many ways that are apparent from their recounting. However, it was chilling to have heard the briefest reference to this child, more in the clinical sense of a case at the other hospital, but then learn more of the actual people involved and their journey. Unfortunately, their son’s tumor was insanely aggressive, unresponsive to chemo, and based on the brain stem itself. When the tumor recurred, it did so direcly on the medulla. Clinically, it is easy to wonder whether this also has some bearing on the damage caused by the surgery, but the more salient issue is the pain his parents endured after the stroke robbed their son of so much of his functionality.
This is not to say that he did not experience joy and pleasure, which he clearly did, even after debilitation (he was in the process of recovering at the same time that the tumor also returned). Not to put too fine a point on it, his parents had little choice but to pursue the surgery. Clinically, he was doing quite poorly and another factor in the stroke may have been related to damage from the pressure of the tumor itself.
In some respects, Colin’s case is not much different. Especially under the pressure of clinical deterioration, the most recent surgery was an absolute necessity. We were extremely fortunate in both the skill (and judgment) of the surgeons and the winds of fate that he did not suffer worse deficits. With the exception of hearing, we expect him to recover most if not all functionality in the affected areas.
This in itself is a miracle, but it is not miracle enough to cure him of this cancer. In the absence of a clearcut path of action, we have greater luxury to contemplate these issues and absorb important lessons from the experiences of others.
We have not yet asked for an actual concrete prognosis. If anything, we have demurred on the issue because of the known lack of statistics and information regarding Colin’s condition. For now, the frustrating comfort of this is that we view him as an individual case with customized treatment and leave it at that, but this perspective may change. We are far from this destination and hopefully will never reach it though it looms in the distance.
Another lesson we have gleaned is that Colin’s overall condition and robustness matter tremendously. He has survived two brain surgeries with modest neurological effect (this is a parent’s inexperienced opinion, not an expert professional one). With some rehab, this leaves available more treatment options than he would have with a serious injury like a brain stem stroke, for example.
We have so much to be thankful for and are grateful for Colin’s health and happiness. His recovery from this surgery has in some ways been better, perhaps in part because it has more adequatly addressed the discomfort of his squished and squeezed brain and perhaps because he has already once experienced the cycle of surgery/recovery and knows that he is destined to return home again.
Today in itself was a logistical miracle, as Aunt Betsey was able to bring Bella the cat to New York and hand her off to Latoya, who will be fostering her. Then, Aunt Kirstie and Uncle Tom came to stay with Colin while Mom took Cousin Simon and Aidan to the RMDH event. In the meantime, Dad took the train back to the car and went home to pick up unopened mail, etc. He was then able to make it to the RMDH event. Then, Uncle Steve came to sit with Colin while Aunt Kirstie and Uncle Tom went back up to get Simon in the evening. Mom came back on the bus by herself to return to the hospital while Dad and Aidan went home for the night, planning to return in the morning. Phew!
Unlike most of the families at RMDH, we live quite close to New York, though not close enough to avoid keeping house locally. It was very strange to end up so close to home on an outing that for many people was likely their first visit to that part of the country. Rather than an adventure into new (and wilder) territory, it was a trek closer to our native climes.
Life at home seems quite foreign now. We may have to buy second-hand medical equipment just to sleep soundly at night. Just kidding, really. Seriously, we won’t miss it, nor will we miss the weird (this is being kind) sleeping accommodations or the bathroom door that is absent a lock. That last bit is nearly inhumane for anybody enduring an extended stay, but we have found the best bathroom on the floor, which is nearly a secret refuge and partly kept that way because it is beyond the locked confines of the unit.
Monday, Colin will have the G-tube installed and we will have more detailed discussions about the treatment plan, the shunt, and rehab. Mom and Dad are both visiting facilities on Monday and have plenty of homework on related and unrelated matters.
In the meantime, we will be able to enjoy a less doctorful day (not entirely doctorless, but that would be entirely disorienting). Colin has been enjoying the interactions with his various visitors quite a bit. Even non-verbally, he seems competent to order them around and demand to take a stroll around the floor or visit the playroom.
Another key milestone was the reappearance of his old friend Duckie! After Colin gave away his beloved duck to another patient who was in pain, we anticipated that the recipient, an older teenaged girl, would return it upon discharge. When we realized that this wasn’t going to happen, we went to some lengths to track down a replacement from Kohl’s.
Colin has three wonderful benefactors who have all gone out of their way to replace Duck. Bonnie and Kate from the Ithaca Kohl’s purchased the last two ducks in the store and shipped them to us at RMDH! At the same time, Trudy, a manager at Kohls.com, located one at a store and sent it to us here. We are deeply touched by the kindness of others expressed to a little boy they have never met.
There is a deep sadness to the illness of any child and a special injustice to the affliction of cancer, which otherwise seems reserved for those who have set more footprints on the earth. The very worst situations do bring out the very best in others. We are honored and privileged to experience that grace.