Tuesday, May 8, 2012

Day 1

Monday, May 7th


It started with feeling tired and weak and having severe headaches in March.  What seemed like a common complaint in a stressed tired college student.  Last weekend he had trouble catching his breath after walking up a single flight of stairs, and his heart rate doubled from his resting heart rate.  That set off a few alarms.

On the moring on Monday, May 7th, Ryan went for a medical evaluation and we requested blood tests.  A few hours later, we had a call saying that he had leukemia, and instructions to go immediately to Albany Medical Center ER.

We all felt like we'd had the air sucked out of us.  LEUKEMIA?  But he's young and healthy.  But he just got married.  But he's got his whole life ahead of him.  This can't be.

The ER Staff was excellent.  They immediately started doing all the things necessary to figure out what was going on and start the long marathon which will conprise most of Ryan's life for the forseeable future.

Leukemia is a cancer of the blood cell-producing tissue in the bone marrow.  Normally we have a WBC (White Blood Cell) count of less than 10,000.  Ryan's WBC was 280,000.  Normal hemoglobin (the oxygen-carrying chemical in Red Blood Cells or RBCs) is 12 - Ryan's was 7.   His platelet count was also low - indicating that his marrow is overgrown with abnormal cells and not able to produce adequate RBCs and platelets.

Additionally, when cells die, they release potassium ("K") - because of the huge number of abnormal cells dying in his blood stream, his potassium was 6.1 - approaching the level where K can cause cardiac arrythmias.

Ryan sat stunned, repeatedly answering the same question to a steady stream of physicians at various stages of training.  I went into professional mode - block out all the emotions and do what needs to be done.

We were relieved to meet Dr. Rauch - an oncologist whom Tim knows professionally and has a reputation as a superb physician.  He explained the above lab results and the risk of "sludging" of blood in capillaries due to the thickening of the blood with so many extra cells.  The effect would be similar to having multiple tiny clots throughout the body and could cause damage to organs, including the brain.

The treatment to reduce the cells is called "phoresis" - a large catheter was placed in Ryan's neck and passed into the Superior Vena Cava - the large vein bringing blood to the heart.  The catheter has 2 chnnels - one to take blood away from his body into the machine, and the other to return his fitered blood back to his body.

The blood goes into a centrifuge which separates the blood into its various components.  Depending on what need to be removed, setting on the machine selectively direct it to remove a particular layer, having little inpace on the other components.  In Ryan's case, they removed the WBCs (2.5 liters of them), leaving the RBCs, platelets & plasma.  This procedure circulated his entire blood volume twice, and reduced his WBC from 280,000 to 131,000.

To treat his anemia, he received 2 units of washed RBCs.  And started the oral chemo -hydroxyurea - which will help to kill of the bad cells.  And the meds to prevent a major side effect of hydroxyurea treatment called gout, where uric acid crystals form in the joints causing a remarkable painful athritis.

Then finally around 2 am, he got to his room for a short & sleepless night.   

3 comments:

  1. What a blessing that he was in NY with his parents, who are docs to help him out. Also what a blessing that he can stay there and have the support structure of his family. Thanks for the info, we are here for you guys and willing to help in whatever way possible. I am so grateful that he has been so blessed thus far!

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  2. Thanks, Paul!! We truly feel the love and prayers uplifting us.

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  3. Hi,

    I'm Vreni's Mom. We live outside of Boston and would love to see you all. We'd be happy to host anyone that needs a place to stay or to come to Boston for a visit or anything else that might be useful. My husband is also in a clinical trial in Boston at Beth Israel so we are down there frequently, and can somewhat relate. Vreni can give you my email. Please, let me know what we can do. I'm sure you can find my phone number so feel free to call.

    Thinking of you,
    Amy

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