Wednesday, August 20, 2008

Good Times Bad Times

The only thing I can think of right now is, 'How do I write this? How do I relay this information?'

I know the only answer is that I have to sit down, open the computer, and start typing. The information I have to relay to you will come out. And then I will hit the PUBLISH POST button and it will all be over.

So, here goes....

About an hour ago, Dr Mascarenhas summoned me and Jo Ann to the conference room–the same small white room where we conferred with him months ago. That was the first day we'd met him. Seems like years ago. I figured the location of the meeting today was a formality, because there were a lot of people in our room.

Dr M had just reviewed pathology tests from Pablo's right side tumor. He spoke to one of his colleagues about the results, and rushed to the fourth floor to see us.

He started out by telling us the good news: the margins are good. This means that the thin rim of tumor Dr Stein left on the kidney when removing the tumor is not carrying living cancer cells.

He then introduced something we were not expecting: bad news. Bad news was not on the schedule for today. For this week. This month. Not for the rest of Pablo's life. But there is bad news. Or, to put it another way, less than great news. The biopsy from six weeks ago was misleading–a risk we always knew about–and the tumor was not entirely dead. In the Wilms' Tumor world, this is called unfavorable histology. I will explain more about this tomorrow, when we have some perspective. You are on this journey with us, so I am pushing this very difficult post out of my fingertips and out to you. I made a commitment to myself to document this process on the Pablog. This is a very tough post to write. So, right now, I just want to get this post over with so I can be with Pablo and our family.

This means we have a new treatment plan. The chemo regimen will be much stronger–an entirely new cocktail of drugs–and, once Pablo recovers from next week's surgery, he will start a course of radiation. Five days a week, he will get a blast of radiation on the tumor bed on the right side. We do not know the duration of the radiation course. As soon as we do, I will let you know.

Dr Stein also removed a swollen lymph node. A basic round of pathology shows no cancer in the node. Dr M has ordered further tests to be sure.

If the left tumor is dead (favorable histology), it will simplify the next phase of treatment by simply becoming a non-issue. If it turns out to match the left side's unfavorable status, it too will receive radiation. The amped up chemo regimen will remain in place regardless of the histology on the left side.

To bring you up to date on Pablo himself: he is doing well, but has been in and out of pain throughout the day. A big goal for today was to pass gas (funny for those of you who know how much he likes to drop the bombs). Around 4 p.m., he cut some serious cheese. So that's good. Dr Stein came to see him, and sent us downstairs to get an Ultrasound. He is concerned that the kidney is leaking, based on the distension of Pablo's abdomen, and his swollen feet. The leak is a risk we are aware of, and may require the installation of a drain. If this has to happen, it will go in tomorrow.

I wish I had something clever or funny to say at this point in the post. I do not.

So, I will click the PUBLISH POST button, and see you tomorrow.


Anonymous said...

Hi Jo Ann and Jeff, I read your entire blog on Monday and caught up with the rest tonight. It's beautiful and brought tears to my eyes. I really miss Jo Ann and I think I'm in love with Jeff! Your family is amazing and I have enjoyed reading up on everyone, Harry, Patricia, Grady and Jimmy. I can't imagine what it's like for the two of you or what it's like for your precious 5 year old. Pablo and all of you are in my prayers. And I got y'all on a good ole fashion rosary prayer list in Morgan City. LYOB Donna

MKPatrick said...

Dear J,J,G & P,
We're here...with you every step of the way. The prayers continue, the love and light continue down the bumpy road.
Perfect Health & Love,
Mary Kay, Matthew, Luke & Amelia

Unknown said...

I have a special place for all of you in my thoughts and my heart - I took a deep breath when I read your post tonight. Gather yourself, and tap into all the love and light that surrounds your family. It will help you through.

Prayers and love for all of you every day,

Lynn Rush

Anonymous said...

Keep your collective chins up, we're all out here thinking of you and sending every ounce of love and positivity we can your way. Much love to you all. The Nolans xoxox

Jackson said...

Dear Jeff and Family, I've been following your story for some time, I love your writing's on Pablo. I'm so sorry for the news but he's a tough little guy!!! My little man to was diagnosed with Wilms stage 5 unfavorable in the left kidney and we to had the same surgery however we went back in and removed the entire left after finding that it was indeed unfavorable, didn't want to risk any lingering bad cells floating around. He's treated at Childrens in D.C., Dr. Dome is his primary doctor.(he is the guru for Wilms and if you need to get a hold of him e-mail me and I'll give you his #'s) I guess I'm telling you this because Jackson has been off treatment for 8 months now and he's finally back his normal self. (a side note watch out for the vincristine, keep them muscle's moving, swimming is great threapy for them) If you need any one to talk to who's been down this road just e-mail me, I'm also a part of a great support group on line just go and join the one for Wilms. I'm so sorry my heart goes out to you right now, I remember the pain. Try to stay positive!! You can read more on Jacksons adventure's at Praying for you'll to have some peace.
Cheri and Family

Anonymous said...

Jeff & Family,
We know how hard it is to stay positive through this journey that chose you. There were many times through our daughter's battle with leukemia at CHLA that we received news that left us numb and in disbelief. At one point we were called in to a conference room and told that even if Kelsey had a bone marrow transplant, there was very little chance of her surviving. We found a way to gather ourselves and searched out other opinions. We eventually moved her to City of Hope in Duarte and chose to do the bone marrow transplant there. Kelsey started Alemany High School this Tuesday and is a week away from getting her driver's permit. Stay strong and don't be afraid to get opinions from as many experts as you can.

Our love and energy go out to Pablo and your family...

-The Burkes