Saturday, January 12, 2008

Clear as mud

Here is what we've learned so far:

Last Friday, Jan 4th, Dr. Wexler sent me an email stating he and Dr. Chen (via email) have concurred that surgery was the logical next step for Nick after reviewing the latest PET scan but before meeting with his surgeons and review of the latest MRI scan. On Thursday, Jan 10th, he finally called Lee and I to say: "After meeting with our surgical staff, it has been decided NOT to do surgery." He wouldn't answer any questions, as to not misrepresent or put words into others' mouths. He did state there is not significant evidence of disease to warrant a life-altering and disfiguring surgery. He kindly referred us back to Dr. Chen for further treatment options. Fine.

Yesterday, we heard from Dr. Karen Albritton. She was incredibly thorough during our 45 minute call. She (and Dr. Grier and Dr. Rhabar) also agree with Wexler that there just isn't enough evidence of tumor recurrence. The offer is still available if we still want to have an "aggressive biopsy" rather than the full surgery, although they cannot weigh any benefits to having this done.

She has also communicated with Dr. Chen this week as the Boston radiologist has found a suspicious nodule above his teeth in his gums that is about 1/4" by 1/2" that has grown inbetween the Nov and Jan MRIs, altho it doesn't show up on the PET (not active). Dr. Chen asked her if she thought more chemo would be appropriate; the answer is - could be.

Bottom line is to first, get a needle biopsy done of the nodule. If it is negative, we may take a breath of relief and just monitor Nick with follow-up scans to see if a tumor presents itself. If the biopsy is positive, we're in big, big trouble and will consider alternative chemo drugs. She said it is similar to antibiotics; if penicillin doesn't work, another antibiotic may help. If Nick relapses next month, it won't be because of we didn't do surgery or didn't have more chemo - it's just the rhabdo cells flippin us the bird and saying "bite me". She also said our surgeon doesn't need to do the biopsy (they like to take things out with scalpels) - a radiologist can do it. Dr. Albritton sent me the two MRI pictures so we could see exactly what she was talking about. She is a wonderful person and let us know she would be available next week should we (or Dr. Chen) have further questions or consultation, just to give her a call.

This Monday, Dr. Chen is presenting Nick's case to the tumor board and we have a meeting with her on Tuesday morning. I think we are going to go ahead with the biopsy and see what unfolds. I don't have a bad feeling about the results, mainly because the nodule doesn't appear to be active.

Unfortunately, this battle is going to be a continual journey of tests, waiting for results, treatment changes, more scans, etc. It is not an exact science, it is not black and white. Because this cancer is so rare, there isn't enough data to determine a proper protocol. We are going to help best we can in getting Nick's diet radically changed (can you hear Kelsey groan?).

In the meantime, Nick has grown enough hair on his head to get another mowhawk - maybe he should have more chemo... He is going to call his counselor at the Univ of Utah and see if he can start a week late (using a "CHIP" - Cancer Has Its Privileges" card). He is feeling and looking great (except the hairdo).

Thanks to all of you for your prayers! We are so humbled by the love and support, it is amazing. One more thought; just as I'm ready to fly back to NY to personally strangle Dr. Wexler for not responding in a manner I anticipated, I have read in my online rhabdo support group there are several newcomers, as well as veterans with relapses, where infants and toddlers are battling this horrific cancer. And Dr. Wexler is their only hope. These little ones are having major organs removed; chemo treatments that make them so sick, they will truly never fully recover, even if they beat the cancer; parents with little or no outside support, living in a strange, overwhelming city away from home - so as proper perspective resurfaces in my life, please extend your prayers to all the others that so desperately need it, too.

God bless these wonderful pediatric oncologists, God bless our families and friends and may God bless you.

Lori

3 comments:

Chris Ulvin said...

Dear Lori,
May God bless you, Lee, Nick and Todd and clear the mud. Love and prayers, Chris

Obsessedwithlife said...

Like I said before, Dr Albritton is wonderful and I'm happy you feel the same!

I'm going to keep up the prayers. I know what you are going through. The third time I had cancer they were confused about what to do with me and many other times over the course of my journey. It's very crazy. I am pulling for you all!

Rachel

Obsessedwithlife said...

Re: your question-"did you try experimental chemos? If so was it any different than the chemo from your first diagnosis."

Answer: by the way, face paint works great on bald heads, if need be ;).

So, to answer your question, the first recurrence I had, we did somewhat of an experimental course of action but it was typical sarcome drugs used differently than the first time followed by an autologous stem cell transplant. The third time I was sick, my Drs searched the world for clinical trials, etc. but I didn't qualify for any. I have to say the second time I had chemo it was harder on my body unfortunately.

Hope that answers it but if not, you know where to find me.

Rach