Tuesday, April 21, 2009

Shell Shocked

Cushion kingdom: Grady + Pablo + Peter threw every cushion in the house into the stairwell, and jumped in. Major fun on a majorly strange day.

Note: Please read this as if it were yesterday. I wrote this entry yesterday. We decided not to post it until this morning.

I sit and stare at the blank screen.

For the first time in 11 months and four days, the words don't effortlessly flow from my fingers. Tears are the only thing that flow without effort today.

Since mid-afternoon, Jo Ann and I have sat in our bedroom with Peter and Brie—four people blockaded in a cosmic bomb shelter. We've wept. Cursed. Contemplated. Held one another. We've let the light in. We've stared at one another's souls. And we've wept more. The entire time we sat in our bomb shelter, bombs were going off above us. Pablo and Polly—later joined by Grady—pounded the floor above as an afternoon of cops n robbers reached epic heights.

Upstairs: hours of laughter and sunshine.

Downstairs: hours of sorrow and spiritual free fall.


This morning's CT scan revealed three spots in Pablo's lungs.

It's that simple. It's that complicated.

Dr Mascarenhas looked shell shocked when he walked into the exam room. I inherited Dr M's shock. Overall, our guard was down. Polly wasn't even with us to take Pablo to the playroom during the medical meeting part of the exam. For 11 months, Polly has been with us every time we've met with Dr M. But Pablo's been happy, scrappy, grinning and playful, so we had her stay home.

We walked into the room thinking the worst was behind us. But then the worst was right in front of us: the cancer has recurred. Dr M believes the spots are anaplastic Wilms' tumors. There is no way for him to know this for sure by looking at a scan. What if the spots are a few random bits of blob left over from his infection a couple weeks ago? Jo Ann asked him how certain he was, based on his experience. His answer: 99%. A full biopsy is not possible—Pablo's body is too fragile for a major surgery. And the recovery from a procedure that would cut his chest open would be just too intense for him or us to handle. The risk outweighs the medical and quality of life benefits by an order of magnitude of about 10.56 trillion.

There is one surgical option that could disprove the recurrence: a laproscopic biopsy. It's minimally invasive, and would not require his entire chest to be cut open. And one of the spots is positioned perfectly for such a procedure—it's on the rib side of the lung and could be easily accessed by Pablo's surgeon, Dr Stein. In order for this surgery to be an option, Pablo needs a couple other tests this week. We are expecting to have those scheduled by the end of today. This is our beacon of HOPE.

Dr M and Dr Stein have put time on hold Monday for the procedure.

I am shattered. Jo Ann is shattered. Grady + Polly: shattered. Pablo: smiling and just wants to have fun. Why doesn't the cancer in his body compute and go away?

But still, in the face of nine months of chemo and a round of radiation, the cancer has recurred. And there is very little, if anything, that Dr M and can do for Pablo. His body has taken all it can take in the way of treatment. We knew that if Pablo's cancer recurred in the two years following treatment, we'd be in a tough place. He's received elevated, aggressive levels of chemo over the last 11 months. It's not like his little body can take it forever. There is a potential clinical trial that Pablo can participate in. We won't know enough about Pablo's eligibility until early next week. It's complicated. It's not easy. And there is no guarantee it'd prolong Pablo's life. Jo Ann and I do not want Pablo to be a patient for the rest of his time on this earth. No way.

Pablo's life. I want to punch the screen again. My mouth is tasting metallic again. Why do I have to write those two words—'Pablo's life?' Why? Why can't my little boy just live his life? Why is his life going to end too soon? Why can't he get a second chance? I want to punch the screen so badly I am shuddering. The facts are the facts at this point. We have run out of moves. If the options are proven to be not viable for Pablo, Dr M estimates that Pablo has three to four months of life left.

Our dear friend and one of my guides in this world, Sean McFarland, came over after Peter and Brie left. He has been a friend of mine for nearly a decade, and has known about Jo Ann since I was thinking about asking her on a date.
Sean is someone Jo Ann and I have taken counsel with many many times over the years. He is my sponsor in recovery. Sean has known Pablo since he was in the womb. His own son, Dylan, is two months younger than Pablo, and we have watched our boys grow up together. On a moment's notice, in rush hour traffic, Sean drove all the way to our home in Silverlake from his office in Venice. He sat with us in our bedroom. He listened. He gave feedback. He told me to stop running the tapes. He always tells me that, and he's always right. And that's why I am not punching the screen right now.

Grady is so interested in what I'm writing that he's sitting next to me waiting to read my words. He came home from school, we broke the news to him, and he walked out of our room. He changed out of his school uniform and played with Pablo for five hours straight.

A minute ago, he was downstairs. I heard his voice. It said, 'I love you Pablo.'

Pablo's tinier, but surprisingly husky voice volleyed back: 'I love you too, Grady.'

There are no easy answers for our family today. I am out of hopeful, tuneful things to say. If you want to know the truth, I am f***ing sick of everything. I don't want to be in this world without my son. I don't want anything in this world without my son. I can't be hopeful about that. I can't.

The boys will sleep in our bed with Jo Ann. I will sleep at the foot at the bed in the orthopedic-prescribed Lazy Boy recliner that Acacia and Josh from our office picked up for me this evening. I got zero sleep last night. The back hurt too badly.

We love all of you.

We are all exhausted.

We are going to sleep.


Anonymous said...

Tuesday at exactly 9:00 a.m. I was totally focused on Pablo... imagining him enveloped in white light. I was imagining him hanging with U2's Edge at a concert. All good things.

And now this horrible news. I can't say anything because my life experience doesn't even come close to the idea of losing my child.

But I will pray for your continued strength. I will pray for Pablo that he can live out his life with his natural enthusiasm, love and sense of adventure.

With love, Jenefer

Anonymous said...

I am so sorry to hear this horrific news. Please don't lose hope. This is so unfair and wrong. Please ask the Wilms' group for advice. They are very knowledgeable and have helped our situation.
Debbie Zdrazil

Sara said...

Dear Jeff, Jo Ann, Grady and Pablo,

I am speechless and can't even imagine the pain you must be feeling. Please know we are here for you...beside you on this very difficult journey. May you continue to have the strength, courage and love to guide you through the next week. We are praying for a miracle.

All our love,
Sara, Nick, Simon and Cheyenne

Anonymous said...

I am sitting in class reading this in tears for a little boy and family I have never met. I have been following Pablo's brave fight and have been touched by the strength of your family. I will continue to pray for all of you.


Go Nicole Yourself said...

Thinking many positive thoughts for you and Pablo. With the spirit in your son, it's easy to believe in miracles, so that is what I'm choosing to do. I can't imagine what you're going through so we, your readers, will pick up the prayers for you.

Anonymous said...

Jo Ann,
Oh, my God, I am so upset right now. How can this be happening??? It is sickening...my eyes are burning, why Pablo? Why you guys, I really hate cancer! I am so sorry, truly, and wish you weren't going through this. I will storm the heavens for prayers, will ask God to be with Grady, and let his young mind deal with this all, and Polly, and to keep you all strong and to let a miracle happen, and....just let Pablo be the amazing little boy he is...
Travis posted on the list, I haven't been able to check my PC much, too overwhelmed here, but when I saw the post, I had to come here and let you all know we are praying for you. Know how many love you guys and love Pablo. He is an amazing little man, may God hold you all close to Him.
Here for you, anytime...
Jennifer and Hollyn

thepiersolfamily said...

Jo Ann and family,

I am just so sorry. We all know what we're up against but never prepared for it to actually happen. I was worried last night, but thought, everything must be fine- it's just too soon, it can't be back so quick. And then again I know first-hand how ferocious this monster can be. My heart breaks for you. I don't know what else to say- it is all so beyond words.

We love you all, our empathy goes out to you, and you are constantly in our thoughts.

The Piersol Family

Anonymous said...

We are creating the possibility of a miracle for Pablo. We will continue to hold him in our hearts & surround him with love, light, and health. We are here to do whatever we can to make sure you all are supported & surrounded by love.


The Kastners

Susan said...

Jeff and JoAnn,

Please know that the entire Bennett Direct team at Uncle Dean's office is sending love and good thoughts out West.

We are all so sad to hear of Pablo's news. Our hearts are heavy and we cannot begin to imagine how you all are moving through this.

We all hope that a miracle surfaces and our little pirate prevails once again!

Susan and the entire staff

SteveAudio said...

Mine & my wife's prayers are with you guys. We're wishing you the best the cosmos has to offer.

None of us knows how long anything will last; any of us could lose another at any moment. So rejoice in Pablo's great spirit, and live every moment of his life to the utmost. Maybe it will be long, maybe short, but it is, and will always be regarded as, a wonderful life.

And we'll be praying for a long life for P.

Anonymous said...

I am so incredibly saddened to hear this news. I have come to love Pablo and your family over the months that I have been following the PABLOg.

My prayers are with all of you.

Anonymous said...

our thoughts and prayers are with all of you.
sending lots of love and light.
xoxo- ellen, brian, and leo

Anonymous said...

Castelaza Family,
I am so saddened with this news, don't give up hope without hope you will not have a chance. Keep your spirits high, keep your hope high, keep your head high. Look at your son and try and feel like he does, he doesn't want to give up hope he is still happy. Follow his lead, don't give up...not just yet.
Your all in my thoughts and prayers.

Jessica and Donnie (fellow Wilms family)

Kerry Zeka said...

Jo Ann and Jeff,
The after schocks of your news has spread and is being felt here in Oklahoma. I am currently sitting in a hospital room with Sicily curled up asleep in the reclining chair with tears rolling down my face. I feel your shock...anger...frustration...panic...I'm feeling it! Like you, we were in an office yesterday having the "relapse" conversation with one of Sicily's doctors. Even though she is considered "clean," we are very aware of the "monster that could be lurking under the bed" once her treatments come to an end in June. I just wish I had some magic words of wisdom to share that could offer some sort of peace at this time, but I don't. I actually tried to break the rules and looked for a phone number to call just so I could personally connect with you and tell you how much I will be thinking and praying! This just sucks!!! It flat out sucks!!! If you feel the urge to talk to a stranger who is walking a few foot steps behind you on this journey, email me at kzeka@yahoo.com and I can send you my number or vis versa! Please hang in there, even if it's by the tiniest thread. You have a ton of people hanging on the other end trying to pull you guys back up!
All our love,
Sicily and her mommy, Kerry

Anne said...

How can this be? I am sick and so so sad. I love you all so much. I have been amazed by your strength for the past 11 months and know it will continue as you process this horrific turn. I am praying for a miracle.
I just want to hug you and tell what amazing parents you are to Grady and Pablo. You don't deserve this.

Anonymous said...

I am so, so sorry. You don't know me (I'm a radio dj & a fan of your record label), but I was very touched by Pablo's story. My life has also been affected by cancer and loss of a friend. I hope and pray that the outcome to your difficulties can be positive. Pablo, my young friend, my every thought and all my energy is with you at this moment.

Anonymous said...

to the bravest parents I know, I love you and am so sorry for this news.
there is a collective white light lifting all four of you up...it is huge and beautiful and every one of us that writes to you, reads your works, thinks of you, is loving you.


Anonymous said...

I don't know what to say other than to tell you how much we love your boy. We'll continue to hold you all in our hearts as this journey continues.


Maria said...

Jeff, Jo Ann, Grady - So so sorry to hear this devastating news. My heart and prayers are with all of you and especially with Pablo. If there is anything at all I can do to help in anyway please let me know until and in the mean time sending you all a lot of love and hope. . .

Tatiana said...

Didn't know you were in recovery. Me too. I lost three people last year... one of whom was my dad who died suddenly at 59 while my mom was battling cancer. This quotation helped me a lot:

"When you have come to the edge of all light that you know and are about to drop off into the darkness of the unknown, Faith is knowing one of two things will happen: There will be something solid to stand on or You will be taught to fly." - Patrick T. Overton

Godspeed to you guys. xoxo


Anonymous said...

I am a friend of Sicily Zeka in Oklahoma; a fellow Wilms Warrior. Although I do not have a child suffering through what you are going through, I see what the Zekas deal with. My friends son also is a Wilms Warrior at TWELVE. It was her carepage that brought me to your site. I may not know you but know that there are strangers out there that also pray for Pablo. Your family sounds like an amazing source of love and strength. One can only try to understand the heartache that you are experiencing. I will keep you all in my prayers. It will take all of your strength also to fight for him. Be strong.

Unknown said...

If you need anything let me know, doesn't matter if it is 4am and the little pirate wants milk and cookies. You have my cell number...

Matt (malo)

Anonymous said...

Oh, you guys, I am in total disbelief. We continue to send our prayers to all 4 of you. You are incredible models of love and strength and dedication. Pablo could not have asked for better parents.

All our love,
Stephanie and Pete

moll-o said...

We are devastated to hear this terrible news. We're praying for Pablo and those who love him so dearly.

Love from Germany,

Molly and Laney Böttcher

Jay Erdahl said...

Sweet Pablo. I'm sorry you have to deal with this crappy news. Prayers are with you and your family. This sucks.

Mom to Charlie

alexandra Wintersteller said...

I read your post with tears streaming down my face. It breaks my heart to think of what you are going through. Please don't give up hope. My father in law did oxygen treatments every three days and it bought him an extra year and a half -his western doctors were so impressed because he was given three -four months.
Jo Ann you are an amazing mother. When I would see you in the park, and we would hang out with the kids. You struck the perfect balance of being attentive and listening to Pablo's words, but you also gave him the space to do his thing. You talked about how important it was for you to stay home and just be a mother this time around - it was your dream to do that, and I am so glad you did. You have this great sense of mothering - you were calm, you could laugh with Pablo, but you also knew how to say no in a matter of fact way. I really admired your style then. Now that I have read everything you have been through, the way you handle all the meds, like a fully trained nurse - you are just incredible.
I will keep visualizing a bright white light surrounding you all. I will pray that a miracle comes to you. You are a family with such grace.
Thank you for writing to all of us - your words so painful to write and to read, but expressed in such a beautiful and raw way.
I send you my love and all the positive energy I can muster.
Alex Peter and Sasha Wintersteller

Anonymous said...

I came to know Pablo through a friends caringbridge site and have fallen in love with a little boy I have never even met. as I read you update this afternoon I am stunned and cannot imagine the way you are feeling right now. But I am a firm believer in miracles and I promise to pray everyday that Pablo is your own little miracle. My thougts and prayers are with you and your family.


caterinafmig said...

Hello my name is Caterina and was made aware of your sweet Pablo through Sicily Zeka's Caringbridge site.

Cannot even begin to fathom what you have gone through and are going through now. My heart truly goes out to you with this shell shocking news but will certainly trust and believe in God's sovereign love and goodness for precious Pablo and all of his family.

Jeremiah 30:17
"But I will restore you to health and heal your wounds," declares the LORD.

Psalm 121
I lift my eyes up to the hills-
where does my help come from?
My help comes from the Lord
the Maker of Heaven and Earth' He will not let your foot slip-
he who watches over you will not slumber.
Indeed, he who watches over Israel
will neither slumber nor sleep.

♥ ♥ ♥ ♥ *GOD LOVES YOU* ♥ ♥ ♥ ♥

In His Love,


C.O.L.E. (Caring Openly, Loving Eternally) Prayer Team

Tiwanna said...

I expected to check in today and see a celebration going on but I am in shock as I type this. I wish I had some wonderous, calming, all knowing knowledge to give you at this time but I don't. I don't think anyone does.

As I read the post, I looked at my feet and watched my son, 8 and healthy, doing homework and was very grateful. I was also mystified as to why Pablo, the sweetheart that he is, does not have such a simple thing as good health. A thing most people, including myself take for granted daily.

Thank you for the updates. I can't imagine how hard it was to type this entry. Pablo is touching hearts coast to coast. I will continue to keep him and the rest of you guys in my thoughts and prayers.

MKPatrick said...

Dear Jo Ann, Jeff, Grady and our dear sweet Pablo,

Our thoughts and prayers are with you. Praying for a miracle. We love you.
This sucks. Can't think.

Love & Light,
Mary Kay, Matthew, Luke & Amelia

Anonymous said...

Jo Ann, Jeff, Grady and dear, brave, amazing Pablo -- We are out here beaming light and love and hoping it wraps you in some form of comfort. Your journey has moved so many of us and your courage, generosity and utter strength is awe inspiring. You have indelibly touched so many of us.

You are a beautiful family. You are in my heart and in my prayers.


Anne said...

Do not lose hope. We are praying for you all. Neal, Anne, Natalia, Henry, and Owen Morris. N.O., LA

Anonymous said...

So sorry to hear the news. As I have followed your blog over the months, I so admired you as a family. You are wonderful parents with wonderful children. This doesn't seem fair. Prayers and thoughts from Hartland, WI are coming your way.

Lynn & Steve Meyer
Hartland, WI
your shirt tail relatives

Anonymous said...

We love Pablo's strength, and silliness, and hats. We are so proud of you as a family. All of our thoughts and prayers are with you.

With so much love,
Sarah and Doug (Polly's friends)

Paige said...

I will be sending every ounce of love and light I have towards you all, and especially towards beautiful Pablo. I am so, so sorry you are confronting yet another terrifying obstacle. If you want to run away to our crazy farm, chickens and horses await. Love, love, love to you all.

JT Griffith said...

Let's all focus on that beacon of HOPE!


Heather said...

I so love JT's recommendation:focus on the beacon of hope.And I am,it's just that I am sincerely pissed off right now.Just know I love you all.As I said on the phone Jo Ann,I am at a loss for words and action at the moment but know I am here.We are here.And yes I will continue to pray because quite frankly it's all I have for you right now.Kiss that kid for me and Zoey.We'll talk soon.

Unknown said...

I have no words at this moment. I am heartbroken, It is all beyond words. You are in my prayers, as always.

Lacey said...

A really pissed off Heather led me to the blog of your gorgeous boy. I'm am praying with all my might tonight for that beacon.

Anonymous said...

Our thoughts and prayers are with you. We have been following pablos progress through this blog. This is devastating. We love you jeff, jo ann, grady and plabo.
Stephanie and evan

Anonymous said...

dear jeff
my heart goes out to you and your little man. know this. harry and I love you both and are there for you whenever you need us. we look forward to seeing you as soon as it works for you. let me know what might be good times and we will make that happen. i want to hear that laughter from pablito for myself. we remain his abiding, #1 fans. please send our prayers and hugs to joanne and grady as well.
don and harry

Anonymous said...

Jeff and Jo Ann
My tears and sorrow are only a shadow compared to yours. I turned my pedals today in abject anger. I want my friends little boy to be well and I can not make that happen. Please let our higher power bring, at the very least, a sense of joy to Pablo and a comfort to you in his joy.
Damn it!
Greg Giesler

Anonymous said...

our hearts are open to your pain and healing, we walk with you as you need us to and continue to hold you all in our constant vigil for Pablo.
Love Susan David Hayden Parker Madison and Tennyson

Anonymous said...

Jeff and JoAnn,
Shock and sadness....I can not believe it came back. I am at work now and can hardly hold my composure. I had an uneasy feeling about his scans this week...but I thought for sure it was too soon. Do not give up hope. I still have it and so does P....look at his attitude and boundless energy.
I am here if you need me, always.
Much Love, Danica

Stephanie said...

There are no words of comfort, what could I possibly say, except Pablo will be in our prayers along with your family.I found your blog through Heather, Zoeys mom. Pablo is magnificent! Thanks to Heather I'm sure many more people now know about Pablo and will be praying for him. God has no limitations,we will be following. Prayers to you all, Stephanie and family

Anonymous said...

There are no words that I can say that will ease your worried hearts.

I am sure that you are taking in as much information as you can find to make an informed decision about the next step in your journey.

Our family is keeping you close to our hearts as you search for that next turn.

Kris Rech

Darker My Dudes said...

Jeff and Jo Ann and Grady and Pablo,
Our hearts and our thoughts and our everythings go out to you. It's heartening to see so much love here for Pablo and for you guys, and we hope that that - this sense that we're all in this together - will make all the difference, so that this is nothing more than a temporary setback. There's always hope, and we're holding tight on to it.

with love
will and tim and rob and jared and andy

heidi marie said...

i found your blog through heather at little wonders. your family and your sweet little pablo...who i must say made me smile immediately when his picture popped up first on the blog...are in my prayers. he looks like he has a very contagious smile. God bless.

Bruce Dundore said...

Jeff, I saw this for the first time today. Last I caught up, you were all happy at Coachella. I am sorry for the pain your are all going thru. If there is at all anything we can do, anything at all, please tell us. I don't want to intrude on your energies right now, but anything at all, and we're there.

Mashley Love said...

Jeff, Joanne, Pablo, Grady,

We are sending you so much love and aloha. please know that you are in our thoughts daily.

tons of hawaiian sunshine,
ashley lukens

Anonymous said...

I'm so sorry to hear this, that I have no words to explain how I feel, but I can only say that I love YOU guys (PABLO, Jo Ann, Jeff) and to Gray, I want you to know that no matter what you will always have my true friendship and love.

With love, Alonso Vargas