Thursday, June 4, 2009

Bubble Baths + Battle Plans

ItalicDave Cooley gave us a bottle of the world's best bubbles. This pic proves the 'best' part. Pablo and I have developed a nightly ritual we call Crazy Bubble Bath or 'ceeb' for short. Don't know what's in these bubbles, but they are relaxing, they last forever, and they swallow up all our Lego guys....

Our house has become a repository for acronyms: combinations of drugs whose initial letters have been arranged by the national oncology board to create some sort of a memorable name; federal drug codes, which are used when the actual product name is too difficult to pronounce (to wit: IPILIMUMAB and CIXUTUMUMAB); and my fave, RAD-001, which is the a/k/a for Affinitor, a name most people with a fully developed tongue are not challenged to pronounce.

Other terms swimming around the airwaves at our house: stereotactic radiosurgery; radiofrequency ablation; PTEN pathways; PPAR meds; a viral therapy that shares a name with a British beer (Newcastle), was developed in Hungary (Hungary?) and is being used to great effect at an institute in Isreal; differentiation, dedifferentiation, pro-differentiation, phyto differentiation; and heaps of amazing facts about how cells behave when confronted by agents that promote anti-inflammation and anti-angiogenesis. We've even been schooled on the black market for cancer drugs and the vast differences between Phase I, II and III clinical trials. We've become well acquainted with the term 'first in human' trials—as in, 'the last person who got this drug was a rat.'

Most of all, we talk about treating Pablo's disease on four different fronts: physical, spiritual, nutritional, and medical. Up to about seven weeks ago, we relied heavily on the medical aspect. At this moment, Pablo has not had any medicine injected into his body for weeks. And he is stronger and more active and happier than he was even before his diagnosis. We are strengthening P's temple—and the city walls that surround it—so he can endure the next phase of this battle. This four-front battle plan is working. It combines all that we truly believe in, all that we practice (or have practiced) in our lives here on Redesdale Avenue. It makes sense to treat Pablo's cancer in a whole, rather than partial, way. Believing that the body can cure the body is a harmonious, simple notion. So simple, so devoid of medi-techno babble that it is viewed with suspicion in today's society. Some days, Jo Ann drags me back to this world, kicking and screaming. That's when I want to run for the false security of a medical-only plan.

We're putting the finishing touches on the plan for the next phase. Not ready to talk about it here.


Jo Ann and I have mini conversations throughout each day, discussing this theory or that...probabilities...the latest update we've received from Dr M, Pablo's surgeon Dr Stein, or one of the growing team of doctors we are consulting with. The other morning the phone rang and it was a doctor from the National Cancer Institute in Bethesda. She heard about Pablo and had a treatment idea for him. While Jo Ann had her on the phone, she ran all our options by her, gleaning valuable perspective to throw into the mix in our discussions with Dr M. You can't imagine the power of the team we've assembled. Jo Ann, being an executive producer by profession, is in her element in this environment. Charged with her most challenging and most meaningful task ever—saving her son's life—she is spinning 50 plates at a time, getting answers to questions that haven't yet been asked, receiving calls from secret area codes regarding drugs that are far from their eight-page ad spread in People magazine.


¶ This morning, the phone rang: it was a collection agency. We're late paying a $250 invoice at CHLA—an invoice that Jo Ann has intentionally not paid as the hospital and our insurance company sort out details relating to our yearly deductible. I'm laughing as I write this. 250 bucks? At this point, Pablo must be the Million Dollar Kid. I haven't added up the cost of his treatment, but it must be well over a mill. I dig that somebody in the accounting department pushed a piece of paper into a file. Totally. But, still, with the pressure of Pablo's life on our minds and in our hearts, laughing at that phone call is the lightest way to look at it and let it go.


¶ The kid didn't flinch when we eradicated sugar, dairy and wheat from his diet. He totally gets it. He also didn't flinch when he had to start swallowing four pills every morning—whole food supplements whose chief aim is to get his body back in line with itself so it can kick his tumors in the teeth. Kind of brings a new level to 'I did it—all by myself!—that excited proclamation kids all over the world say every day. P and Jo Ann just figured out a way to integrate one of his fave toys into the exercise. Here's what they do: P puts the pill on his tongue, swallows some water, and Jo Ann counts off, clicking the trigger of P's silver cowboy pistol until the pill goes down. Pablo being the offspring of two fairly competitive people, he tries to best his own trigger click record as each new pill hits his tongue. It's hilarious to watch this. And it works, so it's a humorous miracle. No prophet in history has mixed humor with miracles. Wait—does George Burns playing God in a movie count?

7 comments:

Carlina said...

carlin has to count! also, good luck on the quadruple front attack. im a huge proponent of the nutritional approach. i've seen that alone work miracles in the past.

Shay Raviv said...

Good luck with the treatments! You are all amazing people.

LYNN said...

How blessed is Pablo to have Jeff and Jo Ann as parents - you two are truly inspirational. Best of luck with your new 4 front approach - onward to healing and good health!!!!

update said...

Loved seeing Pablo at the park. Fyn said he saw him in McDonalds out of the corner of his eye on CHLA visit but not sure if that was real. You guys are an extra strong bunch of people.

Ashleigh Parker said...

Your Pablo is a precious child. Many prayers sent his way for a complete healing. please contact the Make A Wish foundation and get Pablo submitted to have a wish granted. It's a wonderful organization for children with life threatening illnesses, and will surely aid in lifting him up spiritually with a special wish of his choosing. Btw, A parent can refer their own child.
Here is the link:

http://www.wish.org/refer

Anonymous said...

Sounds like a wonderful plan in process. I love the nutritional approach, with eliminating the sugar especially. Sugar feeds disease. Aloe juice is very healing to the body. I find that massage quite healing too, you can learn techniques like reflexology (massaging points in the feet that correspond to different organs in the body) It is quite effective. Since Pablo appears to enjoy playing cops and robbers with his guns, you can have him play a game involving mental imagery , by concentrating on an image of his cancer cells being blasted by his toy guns! Best wishes to all.

chad said...

You're terrific parents fighting hard for your wonderful little boy. You have an army of supporters sending positive thoughts and love your way, envisioning a happy, healthy Pablo for many, many years to come!