Whose Blog Is It Anyway?

Depending on how long you have been following our little family saga here, you may or may not know that this blog was originally created by our sister-in-law, immediately following Andrew's cancer diagnosis in January, 2008. Its purpose in those early days, weeks and months, was simply to allow her to disseminate updates on Andrew--as he made his way through initial treatment--to family, friends and followers (who were spread across cities, states and even countries), as efficiently as possible. At the same time, it spared us the time and energy that would have been required to update all of those people personally and allowed us to concentrate on Andrew, Lucia and ourselves. It--and she--performed perfectly.

Of course, as time elapsed and Andrew navigated treatment and we got to know our "New Normal," we started to post here on our own. First, we used this blog to express our immense gratitude for the tireless support we received from people near and far, known and unknown. Since that initial post, we have alternately preached, complained, confided, explained, and simply chronicled the journey we find ourselves on. And, at some point along the way, this blog became "ours." But, just who "we" are is a complicated issue....

You see, this blog--or should I say our intention of this blog--is that it serve as an outlet, as a manual, as an archive, and possibly more, not to mention its original purpose: A source for people to follow Andrew's progress. We come here to express our emotions and fears of having a child faced with cancer. We come here to offer whatever medical insight and knowledge we might have gathered from our fight to other families that find themselves fighting Neuroblastoma in their child. We come here with our opinions and politics and guilt. We come here to make note of certain times and events and feelings, so that we not only remember them (it is astounding how much we forget/have forgotten), but so that Lucia and Andrew will be able to come here also and learn them in the future. And we come here to report on Andrew. We do all of this in the hope that this blog helps someone, somewhere, sometime--including ourselves.

It is in the spirit of the above--and in the interest of equal time--that I want to focus on Lucia. I attended a conference on Neuroblastoma last summer and one of the presentations that I was able to hear was by a psychologist who explained that a family that is confronted with pediatric cancer experiences something akin to Post-Traumatic Stress Disorder. Certainly, that's reasonable and understandable. What is interesting, however, is the impact of that on the various family members, once the family is through the "crisis" phase and able to get some distance from treatment (obviously, this is assuming a good outcome to treatment). Her research showed:

The person least affected (usually): The patient. This is usually due to a combination of age at diagnosis--for example, most Neuroblastoma cases occur at 5 years or younger; Andrew was not quite 3--and the treatment itself, which can impact the memory (a nice cocktail of chemo and opiates!). In short, they simply forget/don't remember. We can certainly attest to that: Andrew will point to a sizable scar in his shoulder where he had multiple surgeries over a couple of years to insert and remove his central line and ports and ask, What's that? And we'll say, that's the scar from where the doctors put in and took out your line and your ports. (Keep in mind, this is where he would get "accessed" for ALL treatment--chemo, transfusions, antibiotics, blood draws, nutrition, etc.--over a two-year period, oftentimes for weeks at a time.) And he'll say--blankly--Huh. And walk off and do something else and never ask or care about it again.

Other people less affected: The parents. This is mainly because we're older and (supposedly) more mature and have the coping skills and mechanisms in place that we can allow ourselves to let go as the initial panic and "wartime" mode start to fade. In our case, I know that we struggle with a fair amount of fear at all times, but I think we have gotten quite good at compartmentalizing that and keeping it within a certain bounds.

The person/people most impacted by a cancer diagnosis: Siblings.

How would I describe Lucia? I would say that she truly fits her name: She is light. And it applies in so many ways. She is cheerful and sunny. She is bright and clever. She likes to laugh and giggle and joke. She is outgoing and social and eager to try new things. She is even physically light: She had a soccer game today and her coach commented, as he watched her dribble the ball down the field, Look at the way she just glides. That is Lucia. She is buoyancy and grace. Except when she's eating.

Unfortunately, that is not all she is, because she is also a girl who--and I have made this comment before (in fact, before I really understood its significance)--is the collateral damage of her brother's cancer treatment. The result? An uneasy and uneven relationship with her brother (I won't even attempt to analyze her relationship with us), that pivots on deep-seated resentment, jealousy and anger. This is not typical sibling rivalry or older sister/younger brother dynamics (though we have that, too), it has a grit and aggression to it that most closely resembles contempt. To be clear, this is not something that she expresses constantly. To the contrary--and I'm sure this makes her feelings even more complicated and confusing for her--I think she actually likes her brother and enjoys playing with him. But, there will be some trigger that gets pulled and--BAM!--she uncorks the ugliness. And it's dark.

From our point of view, I think the part of this that is most disconcerting is the fact that we were cognizant of the potential impact of Andrew's treatment on Lucia from the beginning and were proactive in managing the situation: One of us always tried to stay with her, while the other was in the hospital with Andrew; we surrounded her with family and friends in an effort to shield/distract her from what was going on with her brother; we never forced her to go to the hospital to visit (she didn't enjoy going) and allowed her to be as involved as she wanted to be. In short, we thought we were making all the right decisions and playing out all the right moves. Imagine what it then feels like to have her reveal--through tears--that she didn't feel like part of the family while Andrew was in treatment (for two years!); it was us--Andrew, mom and dad--and her.

Toward the end of Andrew's treatment in 2009, we did encourage Lucia to see a therapist at the hospital. She went for a few sessions--at her age (at the time), it was largely therapy through play--but then felt that she didn't want to go. The therapist, for her part, thought she was doing well (enough) and felt that it would not be wise to force her to continue. So we let it go. In hindsight, perhaps Lucia's unsinkable personality of levity and ease and resilience allowed her to simply finesse her way through....

The other quirk in Lucia's personality to come out of this? Her attitude toward sickness and injury and doctors. Fascinating. I won't go so far as to call her a hypochondriac, it's not quite that. She won't feign sickness, but she plays up any sickness or injury that actually befalls her. So:

A splinter? I think we should go to the ER!
A headache? Do I need a brain scan?
A sore throat? Maybe I need an operation to take out my tonsils?

She wants so desperately to be sick--real, legitimate, hospital sick--and it's heartbreaking in its transparency, not to mention its "tragic" irony, namely: She is an uber-healthy kid! We understand that all of this is based in attention. And, of course, given our circumstances, we have to give all of these possibilities and suggestions sufficient time and merit and discussion, rather than simply dismiss them outright. Needless to say, Lucia is intimately familiar with the nurse's office at school. Meanwhile, Andrew? Never been.

Will it always be like this? With the disdain toward her brother and the obsession with serious illness (and we haven't even touched on our relationship)? I won't pretend to know that answer. But, as with many episodes in our lives, I think we cling to the hope that--if nothing else--the expression holds true: Time heals all wounds. Is Lucia OK? The short answer is, Yes. I truly believe she is fine. Or fine enough. Does she have a fair amount of baggage courtesy of this little odyssey of ours? Yes, she has that, too. Will she figure it out? Probably. Eventually.

I was talking to someone during the time when Andrew was in active treatment and she told me that she felt--she had a premonition (I will not get drawn into commenting on the merits of premonitions, I am simply relating a story)--that Lucia would end up making Neuroblastoma her life's work. In thinking about that in the context of this post, my only wish--in the event that the premonition come true--is that she choose to do so with clear perspective and for the right reasons. It would be noble--whatever "life's work" might mean--but it should come from pure and unambiguous motivations.

Before I go, I do want to remind everyone that September--in addition to being the start of school, the start of AYSO, the start of pro football, and so many other events and obligations and distractions--is Childhood Cancer Awareness Month. Please take a moment to think of the newly diagnosed, those in active treatment, those through treatment and those whose treatment failed them. In light of the above, think, too, of their siblings, who are suffering and struggling in a different way. A pediatric cancer diagnosis is a short, short stick for a family to draw--please show your support, especially this month.

As always, thank you.

Paul