Monthly Archives: July 2011

pretty good

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Dr. Sharma left me a voicemail yesterday afternoon, “Nothing scary,” she said. “The scan looks ‘pretty good’ and encouraging, nothing new, just some post-operative changes.” She then went on to say she would not be in this week because of some family issues, and asked to schedule for next week.

I paused and thought, “Pretty good? That’s like what, a B- or a C?” So I called the oncology clinic to see if I could talk to someone about the scan, and reschedule. Of course, I did not mention that they again did not honor my request and called me early with the news. Oh well.

No one was able to immediately talk to me, but by late afternoon another doctor called me back. He said, “Well, I don’t know what you and Dr. Sharma discussed, so I’ll just read you the report.” He went on to read that there were no new masses found, and the “post-operative” change had shrunk but apparently there was a bit of fluid. The “post-operative” change should continue to be monitored. Hard for me to interpret that, but I’m guessing that’s more like a C or C-. Like academic probation? I was tempted to ask for a copy of the report, but decided to hold off until next week when we can discuss with Diego’s doctor. No new masses means he passed, right?

I guess, all things considered, passing is pretty good.

purple heart

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Diego’s purple heart bead arrived in the mail a couple of weeks ago. On Diego’s last trip to Kaiser we had tried to get it from the clinic but the child life specialist, aka “keeper of the beads” was not there. The bead is part of Diego’s courage necklace, which has been donated bead by bead over the past 12 months by the Beads of Courage project. This purple heart bead represents the end of cancer treatment.

Treatment ended nearly 9 months ago, why the delay? Well, life gets busy. Over and over again I’ve vowed not to get too caught up in work and the day to day grind, to not lose sight of what’s important but inevitably things fall through the cracks. In this case, it was the final bead. In my defense, I had tried repeatedly to get the beads on numerous occasions but the “bead keeper” wasn’t in. While treatment officially ended on November 2nd, we were waiting on that final bead for Diego’s port removal. Then, the additional tumors things put things sort of up in the air. But with our decision to remove the port we drew the line in the sand that he was, in fact, finished with treatment.

When we put the final beads on the necklace today, it was clear to me that Diego has already moved on. He remembered what some of the beads represented, but not others. And as he goofed around while I tried to carefully feed the string in the small holes for his third strand, it became clear to me that this necklace may always hold more meaning to me than to him. And, I’m okay with that. I hope he forgets it all, the 5 surgeries, the chemo, the 2 bowel obstructions, the radiation treatments, and combined 2 months of hospitalization. I wish I could.

So the urgency of stringing that bead today is because tomorrow is his big scan. I say “big scan” because it may truly reveal whether the dead tumors found in the Spring were a relapse or not. The post-op scan he had 3 months ago was clear, but no one really knows how quickly these tumors grow. The Wilms tumor list serv hasn’t had too many encouraging stories of late, so I’m really holding my breath on this. As mothers, I think we always look to our instinct, but honestly, once you’ve been through this kind of thing you realize that you’re instinct is probably only right 50% of the time. What does my gut tell me? I have no idea. He *seems* to be doing really well, but he’s reverted to nightly bed wetting over the past month. I don’t know how normal that is. I mean, he’s 4 and half, not fourteen, so…normal?

So yeah, I’ve told the clinic that I don’t want the results until Diego’s Tuesday follow up appointment. Sooner might be better, but really who wants to jump every time the phone rings?

holding our breaths

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These past few months have really been great, and mostly full of blissfully normal moments.

Diego’s next scan is coming up in about 10 days, however. As time grows closer, I feel a bit like a child knowing summer vacation is coming to a close. We really don’t know what will happen at the next scan, but we have to prepare for the worst. There is a higher likelihood of finding more cancer, unfortunately, as his case hasn’t exactly been text book. This means I need to consider how to figure that work-life-chemo balance once again. Things feel really great right now, I keep trying not to think about the good times coming to an end. Even if we have to go with Plan B, it’s not like the good times are “over” they will just not be the same. I guess I’m hoping that if I put it out there that I am prepared then, like having an umbrella on a sunny day, nothing will happen…

But whatever does happen, getting that Broviac removed was the best decision we’ve made all year. It has given us a chance to live like a care-free normal family. I hope we get much, much more of this.