Business as usual? (Not so much)

Ok, apologies for being somewhat delinquent in posting an update. For the record, my ambition going forward will be to post about once a week, time and meaningful developments regarding Samantha permitting.

After the first few days of pills, things settled down in our house considerably on the chemo front. This is a pretty straightforward protocol – four days of anguish with the oral meds, then relatively unobtrusive injections (requiring a 4 hr Dana Farber visit) at the beginning of weeks 3 and 5, then start again after the end of week 6. Repeat 8 times. If you still have your hair at the end, you win a prize.

There have been a number of great highlights in our house over the past couple of weeks. Shortly after the last blog entry, I went to pick the kids up at school, an all-time first for me. Mikki smiled with glee and skipped down the hallway, and Sammi literally jumped into my arms and gave me a full body hug I still remember two weeks later. We had the joy of dancing on the streets (literally) with the girls and our friends at Simchat Torah, taking the family for a bike ride on a sunny weekend fall day, watching the pride on Sammi’s face as she demonstrated her mastery of our backyard trapeze (which her older sister hasn’t quite gotten the hang of yet), and a double dose of apple picking in Maine with some good friends this past weekend. But for the brain tumor, life is good.

Many of you have asked how Sammi is doing. The reality is that the doctors won’t know anything meaningful about the tumor progression until her next MRI in December. Physically, she seems fine. We tend to see her right sided weakness in accentuated terms these days, but it’s hard to tell if it’s really getting worse at this point or if our concern about it just makes us more aware of her pre-existing deficits. This morning I noticed she was dragging her foot a bit more than usual as she walked down the hallway to her classroom – is that because she’s tired from being up too late last night (which tends to accentuate her deficits), or is it an indicator that the tumor is growing and doing more permanent damage? It’s impossible to know.

In terms of the medication itself, she’s on a relatively low dose and chemo is cumulative – which is to say that it builds up in her body over time, so the most visible side effects including extreme nausea, fatigue and potential weight loss problems will tend to be more acute later in the year. More challenging right now is managing to keep a healthy mental outlook through all of this, and each member of our family is struggling with this challenge in our own way, with varying degrees of success. While the rhythm of everyday life has reverted to “normal” and we’re getting done what we need to get done, on a more fundamental level I think each of us is fraying a bit at the seams, and it’s starting to show on the margin in various forms of physical and mental exhaustion.

Mikki has acted out a few times recently. It’s hard to know how much she understands at age 8, and we don’t want to scare her by over-explaining, but she’s perceptive and clearly in tune with our level of concern. We also perceive some increase in resentment over the usual sibling rivalry stuff. No doubt she hears many of our friends asking after Samantha and wonders why they don’t ask about her. She also reflected some bitterness that a lot of people in school (well meaning, no doubt) have asked her about her sister and she “doesn’t understand what’s so special about Sammi.” She also reports feeling overly criticized at home and has several other recurring beefs – we struggle a bit with trying to sort through what is normal for an 8 year old girl vs. something symptomatic relative to the situation in our house. We’re keeping an eye on this and trying to make sure she feels listened to and loved. In the meantime, do us a favor when you see Michela and try not to make a fuss about Samantha either to her or in front of her (alternatively, please don’t overcompensate by making too much of a fuss about Michela either).

As for the patient, Samantha varies from being a charming, engaging 5 year old to acting like a slightly overindulged child in search of greater control over her life (and who can blame her?). It’s hard to find the right balance of having a soft hand with her on age appropriate behavioral issues while retaining a semblance of respect for elders, control and discipline in our household. Mikki and Ali notice, and complain when we have a double standard for Sammi, so we try hard to have consistent rules. I think this is a challenge for all parents, and in our case we probably over compensated last time around by being too lose with every day discipline with all of the kids. We often find ourselves letting things slip because we’re too tired to enforce a rule or because we don’t want our kids, in our limited time with them each day, to feel like we’re constantly harassing them with negativity. That said, we don’t want to end up raising spoiled brats either.

In Maine last weekend, for example, we went geocaching and Samantha fell asleep in the car on the way. We left her and Cindy in the car and proceeded on the short hike to the buried treasure. After selecting their prizes, Mikki and our friends kids eagerly sifted through the geocache box to choose something Sammi would like. Upon arrival back to the car an hour or so later, Sammi was just waking up, horrified at having missed the excitement and resolutely disappointed in the toy selected on her behalf. She proceeded to throw a fit which would make Eloise (you know, the one who lives in the Plaza) proud.

Our friends, eager to help, suggested all of the logical solutions to this problem – we could go geocaching again the next day, buy her something at a local toy store, find something at their house to give her as a present. There were no shortage of readily available alternatives to appease her. On the other hand, perhaps this was a “Blessings of a Skinned Knee” type parenting moment, where Samantha would be better off in the long run to learn to live with a little disappointment – e.g., you don’t always get what you want, nor should you (moreover, you absolutely can’t get what you want by being rude to your parents and throwing a sh*tfit). In this case for us the later path was the obvious choice, but there are interactions like this on a daily basis and we find it increasingly hard to decide where to draw the line, especially now that she’s back in treatment.

The medication issue has become particularly acute. Because the chemo suppresses her immune system, she is at high risk of getting pneumonia and has to take a prophylactic dose of oral antibiotics every day. We struggled with this mightily during her first course of chemo, but ultimately found a form of Mepron which comes in a flavorful banana tasting, but permanent clothing staining, bright yellow liquid. She was on this med for over a year last time and, once she sets her mind to taking it, can get it down with no problem. Lately, however, she has been acting out at bedtime when it’s time to take it. A couple of weeks ago, she ran away from me crying, hid under the dining room table and screamed at the top of her lungs “I don’t want to take my meds and I don’t care if the tumor keeps growing.”

I thought that was the low point until tonight, when she was literally kicking and screaming about if for 20 minutes, despite the promise that I’d take her to the Wiggles concert if she took it quickly, and the threat that I’d leave her home if she didn’t. In the interim, while we all responded to Samantha's tantrum in different ways, each of the four adults in the house at the time as well as both Ali and Mikki got agitated over the fuss. She ultimately took the medicine, got to the concert 25 minutes late, had a great time, then on the way home told me that she hoped I would die. What a great way to end the day.