Thursday, May 21, 2009

No Title

Tuesday morning: Pablo in the sites of the X-ray machine at the CHLA day hospital.

Tuesday, Pablo and I arrived at CHLA day hospital at 8:20 a.m. Jo Ann took Grady to school in La Canada, and raced to meet us. We were at CHLA for Pablo's scheduled chest X-ray, and to do the third and final dose of chemo in this round. The chest X-ray comes before chemo on these days, so that Dr M has time to review the image while Pablo is still in the day hospital.

As Pablo was lining up in front the X-ray machine, Jo Ann walked in. If there was an ounce of air in that room, I couldn't find it. Jo Ann and I both looked terrified as the tech pushed the buttons on the machine. Without a lead apron, I stood in the X-ray room so that Pablo wouldn't be alone. Jo Ann stood in her usual position—behind the tech, looking at the monitor. She wanted to see what was up. She always wants to see what's up. No way to wait hours or even minutes for the results. Jo Ann and I have been around the radiology monitors enough to know what a clear organ looks like, and what tumors look like. I saw her face and I knew. What appeared on the monitor Tuesday morning was clearly larger than what we'd seen two or three weeks prior.

Jo Ann called Polly and asked her to come to CHLA right away. We knew we'd be in yet another heavy meeting with Dr M that day, and not just a casual physical exam of our darling little child. I could feel my heart drop into low gear. I could feel my lungs barely moving. I could feel my brain telling my face to look OK, to look happy. Pablo sees our faces. Our lungs and hearts are a bit easier to conceal. Jo Ann looked as concerned and pained as a mother could ever be. She carried this child in her womb for nine months. She did a wonderful job caring for our son in utero, and had a glorious birth. Pablo literally flew out of her like a football on first down. It was a sight to see! Jo Ann is stunningly good at being a Mother. She puts nothing above this privileged job. And both of her sons know it. Her husband knows it. We love our son Pablo equally. I know that. But I also know that Jo Ann carried him inside her. She nursed him until he would no longer take her breast. To this day, Pablo finds the deepest comfort in the world by nuzzling into Jo Ann's bosom.

So you can imagine the depth of Jo Ann's sadness on Tuesday. My sadness was equal to hers, but I did not carry my son in my belly for nine months. This is not a figurative illustration. This is real.

From the X-ray room, we went upstairs to see Dr M. We were told to go to room 571. When we walked in, Jo Ann said, 'We're in the bad news room.' As soon as Dr M walked in, we knew that our casual observation over the tech's shoulder was correct. He told us that the tumors had grown 50%. Our hearts were already pumping the bare minimum amount of blood. Our lungs were already shallow. There was nowhere to fall. We were already on the ground in the bad news room. Dr M knew it.

We did not do chemo on Tuesday. We are not sure that we will ever do chemo again. The new regimen of chemo that we'd been doing was clearly not having an effect on the two remaining tumors in Pablo's lungs. Clearly not killing the tumors in Pablo's lungs. The tumors have grown 50% in the face of toxic s**t that is meant to kill them. But they aren't answering the door. So we stood up, walked out, and took our son to have a CT scan of his chest (for a precise image of the tumors), and an ultrasound of his abdomen (to verify that the original home of his cancer is still clean, and it is). And then we went home. That's Pablo's favorite place.

From that moment, we have been searching the world for the next step in Pablo's treatment. There is a gun to our heads today. The tumors are growing fast. And they are in the lungs. You get it. Dr M will continue to be our guide. He is a compassionate, learned and egoless doctor. He's exactly what we need on this journey. Dr M has been a source of comfort and clarity for the past year. That's one-fifth of Pablo's life. We are searching within CHLA, and without. We have to look everywhere. We are searching western and eastern medicine. We are searching treatments that utilize lazers, rays, prayers, chants, flowers, plants and seeds. All of it. We are pursuing and learning more about the spiritual, natural and nutritional aspects of cancer and how to take guidance on those topics to help Pablo's body use its own resources to kill the cancer. We don't know where the miracle will come from. But we will kill ourselves looking for it.

We are working with an oncological consultant. He, like Dr M, is a hero in our story. These guys are like Harrison Ford and Bruce Willis written personally by Joseph Campbell. Pablo is the kid on the edge of the skyscraper. And Dr M, our new onc consultant and future docs and thinkers are the heroes rushing in to save him. Friends of ours have gifted us the consultant. Amazing. Can you imagine the size of their hearts? Just amazing. The world keeps putting more pavement in front of us. And we keep trucking along. We are lucky. We are in pain and full of questions and fear and anger. But we are using our luck and our faith to purge all of that toxic crap by the minute. Our biggest challenge is to stay in the moment. In the moment, we can face the fight. Future tripping is poison to us.

At the end of all this, there is a question that keeps ringing in my head: What do the cancer cells want? What is the brain telling the cancer to do? And, my favorite: Why?

I want to punch the computer screen. But you already knew that.


MKPatrick said...

The miracle is out there. We need to find it.
Love & Light,
The Patrix

Anonymous said...

Jeff, Jo Ann, Grady & Pablo:

We will not give in or give up. We are constantly thinking of Pablo & praying for him. You have our support & anything else you guys need-that goes without saying.

We are creating space for a miracle to show up.

All our love & support,

The Kastners

Anonymous said...

You are continuously in our hearts and prayers. If there is anything you need even if long distance do not hesitate. There is power in prayer.

Our thoughts always,
The Grahams (NOLA)

Anonymous said...

Sorry about this bad news...damn those cancer cells.

Eckhart Tolle writes: "You can always cope with the Now, but you can never cope with the future -- you do you have to. The answer, the strength, the right action or the resource will be there when you need it, not before, not after."

Love to all, Jenefer

Dawn: said...

God. I love you guys. All of my prayers, energy, light, and healing thoughts are directed towards you.

Tiwanna said...

I am just getting caught up on the lastest news in Pablo's battle. I am sad but still full of hope for you guys. The sleeping angel from Wed's post should not have this happening to him. All I can do is continue to think positive thoughts for Pablo and all his family, immediate and extended. He is so special but EVERYONE already knows this.

Love & Support

Anonymous said...

As a mother of two precious boys, my heart is breaking for JoAnn, for both of you, for Grady! I'm in tears. Always thinking of you guys and Pablo and preying for the healing miracle for that darling, sweet, boy of yours. Not a day goes by that I don't send a positive thought or a preyer upwards asking for that miracle to appear. In fact, I find myself doing it several times a day. I will continue to send all my love, positive thoughts and preyers your way. Thank you for sharing your beautiful boy with us. His smile is something else!

Anonymous said...

You might want to check out Yeshi Dhonden. From time to time he visits California -- he's the Dalai Lama's physician. About 13 years ago, my friend, Diane had AML. Thru my regular doctor, Larry Freeman, MD in Palo Alto I got her to see Yeshi when he visited Larry's offices (Larry also has a degree in Tibetan medicine--but it's too esoteric to practice in the west.) Anyway, Diane saw Yeshi about a month after her initial diagnosis. He told her to continue chemo, take some Tibetan herbs and stop eating a list of foods...I think it included watermelon -- too yin, apparently. Diane did fine -- worked on her blackbelt during chemo. Free and clear and healthy after 13 years.

Problem is that he's based in Dharamsala, India.


Les Popoviches said...

Keep fighting, keep hoping, keep the fun levels way, way up there for Pablo, stay strong, don't give up. Never give up. Believe... and fight!

I came across this joke a few days ago and thought that maybe Pablo might enjoy it: Two cannibals were eating a clown. One said to the other:"Does this taste funny to you?" :)

Jeff, Jo Ann, Grady and Pablo, we send you our love, strength and support.

The Popoviches

chad said...

Thinking of you guys and sending positive energy your way.

Anonymous said...

Your courage at this time is amazing. Keep fighting - there has to be a cure out there!!!! The UK has a slightly different treatment plan than the US, all WILMs kids here are referred to the national wilms oncology team - paediatric oncologists who meet regularly in order to beat this disease with guns blazing. It may be worth you contacting them....I know your doctors are amazing, but sometimes there is something in the pipeline that we don't yet know about. Sending love and prayers from Liverpool, England.

Susan Madruga ( said...

Hi Jeff & JoAnn,
We are a waldorf family who met you a few years back at a look-in. There are quite a few families now at PWS who have been seeing this amazing healer, Dr. Wolf. She practices Raphaology, which uses plant medicine(herbs) color therapy (light), high enzyme nutrition (food) and interactive diagnostic therapy (testing organs through their pressure points on the feet). She's had positive results with cancer patients. It's worth going to see her. It's not invasive or scary for Pablo. It's a very different approach to fighting this disease, but I think when you are looking for a miracle, you have to explore things that are different. She has a few offices that she sees patients at, but
I know she will be in the Sunland office today (5/22) because I have an appointment with her this evening. Ginger gelber has an appointment with her as well, and if yoi like, you can take our appointments. I believe you know Ginger from PWS, so feel free to contact either one of us if you're interested in discussing further.

Here's her info:

Dr. Morning Wolf
Natural Healing Arts Center

My heart goes out to you and your family-

Susan Madruga

Scott & Cathy said...

All our best thoughts are with you guys.

Anonymous said...

We enjoyed hearing about Pablo and Isabella from Susan. Our thoughts and prayers continue to be with you each and every day.