Thursday, May 31, 2007

Day +85: "OK, Whatever..."

The lack of recent posts is not for lack of news, although I wish that were the case. The last few days have been a whirlwind of activity and they've also been some of the most difficult we have had to face in this journey so far. I usually don’t spend a lot of time trying to compose these posts, but this was a difficult one and after several re-reads I still don't feel I got it quite right. It seems the winds have changed once again.

To set the stage a bit we have been discussing with Keith’s doctors the options for follow-up treatment now that he has completed the usual protocol for his type of cancer and staging. With a clean series of current tests showing no evidence of disease (NED) or minimal residual disease (MRD) the standard of care is to administer a drug called 13-cis-RA or high dose vitamin A that is primarily used in cancer treatment to mop up the few lingering tumor cells that could still be lurking about. This treatment would last for approximately 6 months but is easily administered at home with a pill and under such a plan Keith could pretty much go about gradually resuming normal activities.

So to complete the overall picture and bring you up to date, Keith finished the usual series of standard ‘work-up’ tests beginning on the 17th through the 23rd of May and these diagnostics included a bone scan, a CT scan, a heart echo, a pulmonary function test, a MIBG scan, and a pelvic bone marrow aspirate & biopsy. The results of all these tests looked encouraging – that is all except one. The MIBG suggested that there were a couple of ‘hot spots’ that were cause for concern and required additional testing. So last Friday Keith returned to Stanford to have an MRI scan. We learned yesterday that the results of MRI seem to confirm the MIBG finding which is to say that his cancer apparently either has not cleared completely or has relapsed.

Obviously, this changes things.

We met yesterday with an orthopedic surgeon to discuss a bone biopsy at one of the spots indicated in the scan. It’s not completely clear right now whether the biopsy is absolutely necessary but if it is the procedure will happen next Monday sometime. In the meantime Keith’s physician team at Stanford is working quickly to confirm his eligibility to enroll in a phase II clinical trial. Further chemotherapy is not considered an effective treatment option anymore.

If you are a glutton for medical terminology punishment this link to the study brief should do the trick: COG-ANBL0322. As I understand it the basic approach here is to introduce a special monoclonal antibody that is designed to seek out and bond to neural cells and specifically neuroblastoma tumor cells, tagging them in a way that allows the body’s own immune system, enhanced by Interleukin-2 to destroy these cells. Despite the sometimes difficult and frankly unknown side effects of this regimen, it seems to us like the best possible course for Keith right now. This effectively means months of additional treatment with regular inpatient stays at the hospital and many more tests – assuming he responds favorably to the treatment. We are not facing the moral dilemma we would have faced if Keith’s tests all came back clean – that is whether to have put Keith through the misery of a similar clinical trial or essentially to have done nothing and hoped we had done enough. No, the only choice here is to move on to the next treatment option.

Of course it was a difficult conversation to have with Keith and didn’t take long for him to process the implications of this news. It would mean that the carefree days of summer that he had been anticipating and deserving of would probably not happen – at least not this year. His mind raced: What about school in the fall? What about my friends? What about just being normal again? He was angry at us, he was angry at the doctors, and at one point he simply stated that he’d had enough. No more. Enough.


It was a difficult moment for all of us and he of course was right to be upset. Still, after struggling with the severe disappointment of this news he soon composed himself, calmed himself down, processed the options, projected the outcomes and ultimately resigned himself to the necessity of more treatment.


With more guts and courage than I could ever muster Keith said “OK, Whatever. There doesn’t really seem to be a choice.”

15 comments:

Allison N. said...

Hey there Keith, I am sorry to see that you will have to remain in "cancer fighter extraordinaire" mode for longer than we all hoped. You are one tough guy and I know you will keep doing what you need to do in order to banish this cancer for good. Hang in there! We are all thinking of you every day. Love from, Allison

John Fiero said...

Keith:

I looked over the description of who is eligible for this special treatment and I saw no restrictions related to cayenne pepper, ice cream, Scharfenberger chocolate, garlic, or the big favorite at our house -- barbeque. So, I say go for it in standard Keithanator "Yeah, I swam in the finals of the OMPA" fashion.

Let the cheering begin.

Anonymous said...

After all you've been through, what a huge bummer to have some hot spots. I'm thinking of you, Keith, and you all, Josie, Steve and Scott. Miss you at the book shop Josie but know you are where you need to be. Thanks for your fabulous posts, Steve. Eases my mind to know how you all are, for better and worse.

Keith, looking forward to having your invaluable insight into the workings of cells and the immune system in 7th grade science. I want you in MY class :-)

Love, Sue Boudreau

Sam said...

Keith,
You have more courage than I could ever ever have. Not ot mention such a fighter.
Your Cousin,
Sam

Linda Bemis said...

Steve, you did a good job of writing what I know must have been a difficult post. Thank you.

My heart goes out to all of you tonight.

God Bless you all,
Linda

Anonymous said...

Thanks for all the information you passed on last night. It must have been difficult to put it all into words and to try to explain to everyone the latest developments. As always, Steve, you did a fantastic job and we thank you for keeping us all informed, not to mention educated!! We are all thinking of all of your family and keeping you in our prayers.

Keith, I look forward to hearing what gourmet foods are tempting your appetite these days!!

With love, Marilyn Stoddard

Anonymous said...

Tonight was the first night of the school play, and I couldn't help but think of Keith (aka Drake) the whole way through. So many things have changed in this one year. Let them change again so that by this time next year Keith is 100 percent his truly amazing self.

Stay strong.

Lori Patel

karen said...

What to say... everything feels so trite. From personal experience, I know what it feels like to have the "medical rug" pulled right out from underneath you. You dare to feel like "normal" is around the corner, but, no, it's not. I know how deflated I felt, and I wasn't going through the kinds of treatments and hospital stays that you are. I guess all I can say is that you have proven to be extraordinarily resiliant and courageous throughout this ordeal, and I hope you can continue to call upon these strengths as you confront this next challenge. You definitely know how to fight the good fight.

Love from all of us to all of you.
Karen Goore

Anonymous said...

Wish we could do more, like move heaven and earth, to help you, but please know we are with you in mind and spirit always. Love, The Lierles

Anonymous said...

Keith,

It appears the finish line is a little further away than you hoped, but you will cross it and win the battle. You have what it takes......you are so very strong with an amazing family and community behind you. There are so many of us continuing to pray for you.

Keep fighting. It won't be long before this part of your life is just a memory.

Love from the McCollom family

Tamara said...

I BELIEVE in the POWER of the KEITHANATOR!

Wow Keith, you have overcome such an incredible odyssey, and I know you will summons the strength and courage to continue on.

Thank your dad for being such an eloquent writer and for keeping us all so well informed.

You are all in my daily thoughts and prayers. Love, -Tami

Anonymous said...

Hi Keith: This is just another bump in the road...hang in, as you will be diving on the Barrier Reef soon. Cancer stands no chance against the Keithanator and his support system. Anyhow, I think that cancer cells are allergic to whitefish pate....which only proves that cancer cells are stupid. We are cheering for you. XXOO The Huntings

Anonymous said...

Hey kiddo,
This really stinks (not the word I really wanted to use, but this is a family-friendly posting.)
You can do it...another hurdle, but not unbeatable.
Know that you are in our thoughts and prayers and if there is anything we can do, we will be there.
Also, best to Steve, Josie,Scott, and Kirby.
Go Keithinator!!!
The Mottiers (Devin's family)

Anonymous said...

Hey Keithers, we're thinking about you and your family all day every day. You're an amazing boy and an inspiration to us all. Stay strong, buddy... you can do it!
We love you, U. Jack, A. Judy, J.J. and Genna.

Julie Whitsitt said...

I am back! Sorry I have been away for a little while. I would love to say "I was in the South of France" but actually I was either at work, Safeway, Park Pool, Wagner Ranch, or somewhere not as exotic. I lost my way in rememering what was important - the Kelley Family. I let the hussle and bussle of kids, work, school, etc. get in the way of checking in. In that regard, I talked my husband getting me a laptop computer. I went for the simple MacBook and just LOVE it. I went to Park Pool today and worked on swim team stuff, my e-mails, and other worthless items before I got home. I was sooo excited. Who else but me would get excited that I could do more work on the run. Today was 5th grade "Field Day" at school. I worked from 10:00 am until 3:00. It was basically just one big recess. We tried to have "games" but they just played kickball in the dust all day and had pizza and ice cream. There were nervous tears thinking of what they are leaving. I was sad, knowing that my last drive of two kids in one place was over.
I saw your brother at swim team the other day. We need to make sure he get some sunscreen on before he goes outside. No tan for Scott. The coaches are being really tough so far. Lots and lots of laps for them. Trevor has only been in the pool for one day so far. He has either had too much homework or another sporting event. I am really looking forward to summer so I don't have to drive all over. I am not sure I can say this summer is relaxing with trying to keep track of 289 swimmers - but I am sure I can manage with my new computer (just kidding).
I am sorry I did not keep in touch over the last few weeks - I think about you every day and want the best for you and your family.
More fun stories to come.