One foot in front of the other

I'm starting this blog as a way to communicate some basic info to friends and family, all of us that care about C and want to understand what's happening and provide support in our own ways.  Ideally I could start at the beginning, which was only about a week ago, but there's just too much.  So I'll dive in at this point, and what's already happened may come out in bits and pieces.

I'll set this blog up so that various family members can contribute, including Chuck, but you might be mainly hearing from me.  I don't mean for this to be my personal journal - what's happening is not about me - but I'm sure there will be some evolution that I can't predict right now.  The point is that C is sick, there is a battle ahead, we will be relying on the support of everyone with the desire to help, and that can happen best if there is some central place to follow what is happening.  This can be that place.

Please post comments - this is one way to share your thoughts with C and the rest of us. Forgive formatting errors and such in the blog at this point - we'll get it sorted out. At some point soon we will also be gathering info on the kind of help anyone can provide.  There will be many ways to help and we'll get that organized.  And the posts won't be so long in the future - there is a lot to say at this point, but it won't be so long-winded in the future.

Here is where we are right now.  C has been diagnosed with Alveolar Rhabdomyosarcoma.  We'd never heard of it either.  This is a disease that mainly strikes children, but does occur rarely in adults of all ages.  Rhabdo, or RMS, is the most common sarcoma in children (about 40%), but sarcoma only accounts for 3% of childhood cancers.  (I hope I'm getting my facts right - our information intake has been pretty massive lately.)  So Rhabdo accounts for a little over 1% of childhood cancers, and it is far rarer in adults.  You get the idea - this is RARE.

C was lucky in the sense that his tumor is in his sinus, so he had symptoms.  Many times RMS shows up in other areas where it can go undetected.  He had some congestion in February and went in to see a doctor.  He was put on antibiotics, then ended up at another doctor, then more antibiotics, and they eventually suspected this wasn't sinusitis.  A biopsy was taken and we got the terrible news about a week and a half ago.  At this point no scans have shown any spread of the cancer elsewhere. That is very good news. There is a small amount of additional info to gather, but so far, so good.  There is a tough battle ahead, but it is not without hope.

Being thrust into this is a massive shock to C, as well as the rest of us.  We have had invaluable help from friends who, unfortunately, have experience with cancer.  Jeff Castelaz got us hooked up with his son Pablo's doctor, Leo Mascarenhas at Children's Hospital of Los Angeles (CHLA), who as luck would have it is one of the experts in this disease (he's a co-chair of clinical trials in RMS, for example).  Connecting with Dr. M has been a godsend, it's as simple as that.  He has accelerated C's diagnosis and care in absolutely critical ways.  He met with us on short notice, answered every question, got C appointments for additional scans and surgery, answered still more questions and hooked us up with the adult oncologist (Dr. Chow at City of Hope) that we will meet tomorrow.  Under normal circumstances all that diagnostic work would not have started until this coming week, but we have it all in hand.  We literally can not thank him enough (though we will keep trying).

That's where we stand.  C is making huge adjustments to this radical change of course, his support group is doing homework, scheduling, logistics, and communication.  We are all preparing for whatever comes down the pike.  Many have gone before us, and we are relying on their experience (The Livestrong organization, for one, is more than just yellow wristbands.  They are an incredible resource to patients and the people around them in all stages of care.)  So now we'll see what is thrown at C, and we will see how we can help him fight this fight.  What we can guarantee is he will not fight alone.


Here are a few photos from this past week.

Picking up scans on CD - the process of getting info where it needs to go is pretty hands on - not what we expected.

The hard data.

Waiting. Lots and lots of waiting.

Meeting with Dr. M, getting information no one ever wants to get.

After our meeting with Dr. M Charlie wanted a margarita. We found a spot near Jeff C's office and hunkered down to debrief. Jeff C. would appreciate the butterflies.

Visiting with Jeff at Dangerbird HQ to thank him for connecting us with Dr. M.

Jeff shared some photos of Pablo a friend gave him recently.

Jeff said to C: "I've never stood IN your shoes, but I have stood next to them."

Another debrief in a park on Sunset with David, C, Clare and Lizanne.

David and C.

Heavy use of mobile devices.

As we sat in the park C had been staring at this painting - he asked for a picture before we left.

Dr. M was able to get C in for diagnostic tests at Children's Hospital - every single person we contacted said, "Why are you HERE?" C was like Gulliver in there.

In recovery, even the apple juice is tiny.

A favorite picture of C taken by David. Out on a backpacking trip, caught in a freak snowstorm, totally unprepared for the change in the weather, embracing it. This picture symbolizes all of this for me - change, acceptance, hope.