Monday, May 4, 2009

Treats + Treatment

Before we get into the details of Pablo's new treatment, here are some more photo treats from our time at Silverlake Park this afternoon. It was just me and P, and it was a blast. Can't wait for Mommy, Polly, Grady and Fred to join us down there. Pablo was tearing it up! He was so happy to be on a self-propelled machine once again. Because of the potential for bruising and stuff, P hasn't been on a bike since a few days after Mother's Day 2008.

Pulling off a BMX trick, like his big bro the house

Arriving at Silverlake Park. When we stepped onto the grass, he said, 'Remember, Papa, I don't remember this place at all, so you have to tell me where to go.' He grew up at that park, but hasn't been there much in the past 350 days.

On break from the bike, making a sand angel.
A speed demon, like his brother + Papa.... Look at that form!

And now the treatment details....

From the four options Dr Mascarenhas laid out for us, Jo Ann and I decided on one of the chemo treatments. When we first started talking about our options, chemo was put on the back burner, because of Pablo's heavy doses of chemo over the past year. When Dr M went away to consider the best drugs to use with Pablo, chemo ended up accounting for 75% of the realistic options. The fourth choice was a clinical trial using antibodies. Jo Ann and I are willing to go to any length to put Pablo into remission, but the clinical trial was not one of those things. We need a versatile plan that we can stop at a moment's notice and replace with something more cutting edge or more probable—a better weapon against the thing growing inside our son's body—and can't be bound by the all-or-nothing rules of a clinical trial.

Jo Ann is our leader in the medical end of Pablo's treatment. I go into whiteout with the fine details of this stuff. After our treatment strategy meeting last week, she and Dr M spoke in more detail on the phone. Over the past year, Jo Ann had read about the drugs we're using within the Wilms' Tumor online community. Within minutes of getting home from that meeting, Jo Ann was reading online about each option, each drug, the side effects, the attributes, etc. She is so mercenary with this stuff, she simply hammers out ideas and throws them at me. I'm a good sounding board for her ideas, and vice-versa. If we were both running point on these threshold issues, it'd be a bit of chaos. I am proud and happy to say Jo Ann is the leader of our medi-strategy team.

The treatment itself is very simple: P will receive two chemo drugs once a week for three weeks. The treatment is given over two hours and will be given in the CHLA oncology clinic. Pablo's lungs will be X-rayed and CT scanned between weeks two and four.

Unlike Pablo's prior nine months of treatment, this plan will not involve hospitalization unless P gets a fever or there's some other complication. Pablo's quality of life was at the top of our list for any scientifically sound option going forward. He has spent more time in a hospital than anyone should. In gross terms, P has been a medical patient nearly one fifth of his life. That sucks—for him (most important), and for us (far less significant). What IS important is we want him to LIVE LIFE and not be f***ing trapped in a maze of blood counts and transfusions and all that.

Obviously, if Dr M could give P a cocktail of drugs that would provide the miracle we are praying for—something that would guarantee Pablo's total remission, we'd be happy to have him be in-patient for as long as it took. But such a thing is not in existence on May 4 2009.

So, until one of the many minds and hearts within the worldwide medical community rings Dr M and throws an idea at him that he has not thought of or heard of—some magical cocktail of drugs that've been in a secret research program—we are going with the two drugs stated here.

Bottom line: our field of vision has narrowed to the next four weeks. We have to harness our energy on the next four weeks. Both in P's treatment, and in our life with Pablo—the real, actual time we spend with him. We are in uncharted territory medically. There are no guarantees. There are no road maps. No stars for guidance. Just a big, blank sky. We can go any direction we want. The question, for us, is: which direction is the right one?

People talk about miracles. Everyone's got a story about someone who was saved using this special tea or that homeopathic method. None of that, we think, pertains to us. We haven't passed on any miracles this week. And in the absence of a miracle, Jo Ann and I have made the best, most informed medical decision we could. For a year, we have been dancing with an invisible opponent that has not responded to our earlier demands to vacate Pablo's body. We will be damned if we'll give up now. Forget that. Not a chance.

When we wake up in the morning,
the stage will be set: there is just it, and us.

Another perspective is: the tumors stop growing, we have Dr Stein remove them in due time, and Pablo never looks back. This is one of the possible paths. Happens all the time.

Of course, as all of this is developing and happening, we are following, as ever, the spiritual path, the holistic path, the path of faith. OF COURSE we are doing this. This afternoon, Jo Ann, Dr M and I had a long, long, l o n g discussion about the power of medicine and faith and how, there's great evidence that together they are a powerful force against cancer. Good thing Jo Ann and I are well versed in these things.

It's been a long day. That's all I got for now....


Heather said...

We love you guys and we enter this treatment plan with you,with great hope and unwavering faith.Faith in the two of you,faith in Pablo and his amazing fighting spirit and faith in One greater than ourselves.The heck with one day at a time,even one moment at a time,it is all about one now at a time.Sending you peace in the now.

SteveAudio said...

My wife & I talk about Pablo all the time.

I'll be working on the installation at the studio tomorrow, and every screw connection, every solder joint, every connector and cable is for Pablo. He'll be in my mind the whole time.

Anonymous said...

so much LOVE & LIGHT & PRAYERS & HEALING ENERGY headed your way.

my faith is unwavering...

Anonymous said...

I know this sounds completely corny, but since you guys are always on my mind, of course I thought of you all and Pablo when my son and I had a Lord of the Rings marathon this weekend. It was something Gandalf said to Frodo and it just hit me and I want to share it with you guys:

Frodo: I wish the ring had never come to me. I wish none of this had happened.

Gandalf: So do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given to us. There are other forces at work in this world Frodo, besides the will of evil. Bilbo was meant to find the Ring. In which case, you were also meant to have it. And that is an encouraging thought.

I don't know, it just seemed appropriate. Frodo and the others are fighting a battle that is unlikely to be won. Yet they fight on with all the good in their hearts and faith that it is all worth something.

I'm part of Pablos Army, armed with love and faith. I think of him everyday and always prey for his healing.

Anonymous said...

Pablo has been a constant in my prayers and will continue to be.

Love to all of you.

Anonymous said...

Your family continues in our thoughts and prayers and our faith, hope and love is with you. From Chicago

Anonymous said...

Pablo is lucky to have such wise parents.

Love to all,

MKPatrick said...

To loving life... Jeff & Jo two are the best possible people to make these thought-filled decisions for your dear Pablo. Sending you strength and light.
Infinite Love and Healing,
Mary Kay, Matthew, Luke & Amelia

Dawn: said...

Pablo's crazy fortunate to have chosen parents like you two. All my energy and love as you start this next phase.