Tuesday, June 12: Dana Farber and more info on ALL

Up at the crack of down - little girls get themselves on the bus - Ryan and I are off to Boston.  We didn't receive the patient instruction packet e-mail but we have an appointment time and a doctor's name, so we're off.  Thanks to Sara Carpenter whose hubby and mom are both receiving care at Dana Farber, we know got some guidance about parking, etc.

On arrival at Dana Farber, we found a parking space deep in the garage (how deep does that thing go?!), then went to the 8th floor where we were given a itinerary for the day.  Wow - these guys have their act together!!  Appointments with registration, lab and physicians.

First stop: new patient registration on Floor 2.  A pleasant greeter directs lost newcomers to the right area.  The usual info was recorded (what, no forms to fill out?), Ryan was given a "blue card" with his patient number in bar code to bring each time we come and a bracelet for the day.  He was asked to participate in a study where any extra blood, CSF or other specimens can be studied to create a databank of info for leukemia research - he agreed to participate. 

Then lunch - the registration staff noted that we had 30 minutes before our lab appointment and suggested we grab lunch in the dining pavilion on the 3rd floor.  The food was great.  And Ryan wasn't the only baldy in town.

Off to the lab for 9 vials of blood to be drawn.

The back to the 8th floor to meet Dr. Steensma and the oncology fellow, Justin.  A "fellow" is a physician who has completed medical school and residency (specialty training) and is training as a sub-specialist - in this case in oncology. 

Justin came into the appointment having reviewed Ryan's records from Albany Med.  He asked appropriate questions about the symptoms leading up to the diagnosis, Ryan's past medical history, how he tolerated the chemo so far, how he is feeling now.  He asked whether we were there for a second opinion or to transfer.  We told him we were primarily there for a second opinion and also of our concerns about going forward with an oncologist with whom we couldn't communicate. 

Justin gave us an overview of leukemia and specifically of Acute Lymphocytic Leukemia, and of the standard general treatment plan.  It was like coming out of darkness. 

(DISCLAIMER:  although I am a retired physician and I am sharing details which I think may be helpful to friends and relatives following this blog and to other patients who may read this someday, I am not by any means an expert in oncology.  I hope my background will enable me to take what I am learning as a mother with a medical background and translate it into understandable terms.  In my descriptions to follow I am very much paraphrasing from memory what I learned and I am not directly quoting the physicians.  Any attempt to extrapolate what I say and apply it to another patient would be a mistake - medicine will change over time as more knowledge is gained, and patients need to be treated individually.)

Dr. Justin's Description of ALL:
-There is a factory in our bodies that makes blood cells:  red, white & platelets
-In the factory, the cells grow and mature and are sent out to do their jobs
-Sometimes a cell will mutate into an abnormal cell that never matures but remains a teenager forever.
-This cells reproduces, making lots of teenage cells that never mature
-The teenage cells behave badly, and over run the factory, crowding out the mature cells and the red cells and platelets.
-The "induction" phase of chemo is to destroy as many of these immature cells as possible, and is usually successful in getting rid of most of them, but even though a look into the factory (the marrow biopsy) shows no more of the cells, oncologists know that there are always more hiding under the furniture or in the closet waiting to come out again later
-the "consolidation" phase of therapy is to go after those remaining hiding cells

Dr. Steensma was running behind, so we had a few hours in the exam room.  After running out of reading material, I made phone calls to the insurance company to clarify the co-pay situation from yesterday.  And found out that the CT scan done with the marrow biopsy hadn't been pre-certified by the oncologist's office and needed to be certified within 24 hours.  Phone calls to the Albany Med radiology department, billing office, etc.  Unable to get through to the oncologist's secretary whom everyone agrees is the person who needs to get the pre-cert.  I swear dealing with all of the nuances of Ryan's care could be a full time job...........

Dr. Steensma arrives - asks and answers more questions.  Gives us an outline - including showing us a powerpoint slide with a graphic of what lies ahead.  More light on the subject!!  Yesterday's discouragement vanishes as a logical and clear plan is revealed.

We learned that ALL patients fall into 3 groups: 
1) Those with negative prognostic indicators - genetic markers that tell the oncologists that the cancer will be aggressive and less likely to respond to chemo.  These patients will need bone marrow transplantation earlier because it will be harder to suppress their cancer with chemo.  Ryan is not in this group.
2) Those with positive prognostic indicators - genetic makers that tell oncologists that they are likely to get a "cure" (or prolonged remission) with chemo alone.  Ryan is not in this group.
3) Those with neither negative nor positive prognostic indicators - the larger group in which Ryan's tumor falls.  These patients will respond to chemo, but often have relapses - this group has an overall 50% chance of a "cure".  They may or may not benefit from Bone Marrow transplant.  The medical jury is out as to whether these patients should undergo transplant.  There are significant risks inherent in transplantation.  Yet many of the patients do receive marrow transplants after completion of their consolidation chemo.

Brief Overview of Management of Acute Lymphocytic Leukemia:

1) Induction Chemotherapy:  Intensive multi-drug chemo regimen for a month designed to kill of the bulk of the leukemia cells.  Month 1.  Usually requires hospitalization.  Check!  We've completed this step.

2)  Consolidation I : divided in IA, IB & IC - designed to "mop up" the straggler cancer cells and put patient into prolonged remissions.  Some of this is in-patient and some out-patients.  Months 2-6.

3) Central Nervous System (CNS) Treatment:  Follows Consolidation I and includes intrathecal chemo (injected by spinal tap into the cerebrospinal fluid) and radiation of the brain and spinal cord.  This is designed to minimize the risk of cancer recurrences in the CNS - the brain and spinal cord - tissues which aren't treated adequately with IV or oral chemo agents since they can't cross the blood-brain barrier, a natural protective mechanism which prevents many substances from getting into the brain - essentially the brain's "firewall".  White cells can cross the BBB because nature needs to be able to send in WBCs to fight infection, etc.  So cancer cells can cross the BBB and grow in the brain unaffected by the barrage of chemo reaching the rest of the body.  ~Month 7.

4) Consolidation II - More chemo.  A few more months, roughly months 8-12.  After this step marrow transplant may be considered in Ryan's case.  So his siblings will get tested through Dana Farber's Transplant Service.  As it looks right now, they have about a year before one of them may be called on for actual donation.

5)  Maintenance Chemo.  Long term oral with some intermittent IV treatments for 2 years.  Designed to prevent relapse.

Whew..........

That's a LOT of treatment.  And a lot of time.  As Dr. Steensma concluded his description, he looked at Ryan and said that he knew it was a lot to face.  Ryan just shrugged and said, "It sucks."  We all kinda of chuckled and agreed that that's the bottom line.  Ryan's ready to tackle it, and we once again feel like we have the leadership it will take to get this done.

We got the name of a local oncologist who has worked with the Dana Farber leukemia team.  My mission for tomorrow is to get an appointment with him.  Lots of prayers that he will accept Ryan as a patient.  Barring that, I'll make the drive to Boston as often as I need to in order to get what Ryan needs.  Much more convenient to do it locally.  But we'll do whatever we need to do.

And we feel blessed to have health insurance (however confusing it may be to sort it all out sometimes) which covers all this, including mileage to Dana Farber, meals for the trips, parking expenses, etc.

What a roller coaster.  I am beginning to realize how much this will need my time and support, and how much I will need to organize my home and family so that everyone gets what they need.

Ryan is frustrated at his weakness and lack of stamina.  He'd really like to exercise and get his strength back but we're both slowly coming to the realization that although he needs to try to maintain his muscle tone, this is not the time to be doing much cardio, etc.  He will need to let his body put all its energy into healing and surviving the chemo.  We will all need to focus on getting enough rest and nutrition.  And we're all learning that what seemed important 2 months ago is quite trivial now.  We're adapting to new living arrangements, new "normal", new levels of love and acceptance.

Today's trip gave us a new dose of reality, yet at the same time the understanding of what lies ahead enables us to feel some sense of control (as if there really is any).  And the professionalism and compassion of those in charge has given us renewed hope and comfort.

Realizing that ultimately God is in charge gives us hope as well.  We are learning to heed the promptings.  Ryan and I have both been concerned for several weeks about the assigned outpatient physician.  And in the past 24 hours, the Lord has not only confirmed to us that those feelings were correct, but has given us another path.

We're preparing for the next battle in Ryan's war.  When we started this blog, a friend suggested the title - and although I liked it, somehow "Private" Ryan didn't seem to fit.  In my mind, I didn't want to trivialize the horrors of D-Day and what was suffered there.  But I keep finding so many parallels:  "D"iagnosis Day, 50% chance of long-term survival, the prospect of more battles if you survive the last one, etc. 

I'm just a spectator.  Ryan has to face all this fear, pain, discomfort and uncertainty armed with nothing but our collective love and his faith.  I want to scream and kick and more.  Ryan is calm and patient and faithful and brave.  How proud I am of him.

---Barb