Monday, February 16, 2009

No Go Fo Chemo/Anger Is An Energy

We just got a call from CHLA. Pablo's platelet count is 62K and not 75K, which is the minimum for chemo. We're gonna go back in tomorrow. We are at the point in the journey where the body starts slowing down its recovery from all the chemo and the other drugs we have to give Pablo to protect his lungs, heart and immune system. Those drugs all kick the s**t out of P's bone marrow and the body's normal regenerative process. (Please accept this oversimplification—I'm not a doctor and either are you lol.) This is the essence of kicking someone's arse to make them better. Like many good things in life, it's counterintuitive in the extreme.

Anyway, when we do start this week, it'll be the final round of Doxorubicin (Red Devil). Then two weeks of outpatient Vincristine. After that, we wait for Pablo's counts to come back up—we have typically had a 10 day delay at this juncture. Once Pablo's blood counts are in the zone, we have either one or two more rounds of the four day chemo cocktail—Carboplatin, Etopicide, Cytoxan and other fine products.

A bit of explanation on the optional second round: Jo Ann has been rallying Dr M and I on the idea of adding back in the amount of chemo that is written in the original protocol. We have had intense conversations about this with Dr M and at home. Jo Ann did an informal poll of other Wilms' Tumor families she's in touch with online. All of the kids who have the same diagnosis as Pablo whose parents responded to Jo Ann got the equivalent of that final round. We're talking quantity of chemo, not number of weeks. The quantity issue is the threshold issue in Jo Ann's passionate discussions with Dr M and I on this topic.

I have said in many posts that the type of cancer Pablo has renders chemo . It's not like playing Asteroids where you frantically tap the 'shoot' button for 15 minutes, and all the little asteroids before you blow up one at a time, leaving a black screen. Chemo with Wilms' Tumor is prophylactic. You're killing an invisible enemy without even the psychological aid of blood markers, which are common with other cancers. That kind of stat chasing would actually make treatment (from our perspective) a lot easier. Everyone likes a scoreboard.

So, when we get into these discussions with Dr M, or with one another, we are debating how to fight an invisible enemy in a way that won't cause more harm to Pablo in the short- or long-term. And, really, we are talking about Pablo's chances of survival. We are talking about our amazing, beautiful, passionate, bright little boy's survival. he's jumping on the sofa right now. I'm looking at him. And I writing words contemplating whether he will be here in a year. And how the WORLD we are supposed to make the RIGHT DECISION about how to cap his treatment.

I can't get my head around it. You might think I'm a deep guy or have a gift for expressing myself, or you might even think I'm a jerk. No matter what, none of those things helps me to understand which lever to pull in the voting booth. Both directions could be wrong. Both could be right. There's a Public Image Ltd song called 'Rise' that will be the soundtrack to this part of my book when I write it. The lyrics and their powerful sentiment are coming up for me as I tap out these words. The operative line is 'I could be wrong, I could be right.' There's another perfect line in the song that John Lydon sings as a mantra—'Anger is an energy'—that fits me quite well right now.

We went to baby Luke's memorial yesterday. I am going to write a full post later this week on the memorial, and our time with John and Laura. I expected to find acceptance and peace, and I did. But something else came up for me as well: anger. I am so f**king angry at this disease. If you want to know why (other than the obvious), check this out: Lance Armstrong was retired from racing for 1,274 days. His retirement ended when he started his first race back last month in Australia. In those 1,274 days, 27.5 million people died from cancer worldwide. Lance has those numbers emblazoned on the tubes of his bike. One of those 27.5 people was my brother Scott. I want Pablo to be one of the people who rides his own bike and shares his story of survival. I want Pablo to ride beside me, like our hero Lance, to show people that cancer has two outcomes. And one of them allows you to stay upright and fly.


Heather said...

Wish I had the easy answers for you on this one.Each day we try desperately to balance our medically fragile children and the quest of keeping them alive.And then there is living life.Quite the tight rope.I thank you for allowing me to sit with you and Jo Ann yesterday.Companions on a journey that no one should travel.I have such I myriad of emotions from yesterday coursing through my mind and body.I too need to process them.Surreal as I stood there,as no one should have to,discussing our children's mortality.The scary part ... how effortlessly it has become.We didn't make the cut with numbers either today.Torn between elation and getting on with this nasty business.Privileged to walk beside you.

Anonymous said...

I don't know how to say all the things I want to say to you. You write beautifully, about a horrific circumstance. Your family has touched my heart. I am the mother of two young boys and we have been following your blog. My heart is with you and your family. Our heart is with you and your family. Lance Armstrong is one of our families heros, as well. In fact, my son just did a presentation on him at school. It was great. We are sending all the good wishes and love to Pablo for a full recovery. I SO hope he beats the tar out of this crapy disease and someday rides next to you healthy and strong. I cried so hard when I read of Lukes passing and the unimaginable strength and grace his parents have. I'm wishing all of you love, peace and healing.

Anonymous said...


Home stretch, Pablo, Jeff, Jo Ann and Grady. We are all with you -- praying, cheering and breathing with you. You can, you will.

Much love.