Remembering days between diagnosis & treatment of Lorelei Decker's Hodgkin's Lymphoma

Remembering days between diagnosis & treatment of Lorelei Decker's Hodgkin's Lymphoma

I've been asked to write a 400 to 500 word story about Lorelei's cancer journey. HA! Knowing I had to keep it brief I tried to cover the first days with short phrases instead of full sentences and still couldn't get it below 600 words! Needless to say, this had to be scrapped so I could approach it from a totally different direction.

Just so it doesn't go to waste, here's what I wrote before I had to revise it:

On the morning of January 28, 2012 I kissed my healthy 17 year old daughter Lorelei on her forehead as she left for a busy Friday of her senior year of high school. And on February 9, 2012 I kissed this same sweet girl on the forehead as the nurse accessed the port in her chest to infuse her first dose of chemotherapy to kill the cancer that might otherwise kill her. Nothing can adequately describe the chaos and emotion of the eleven days between these.

  • Saturday Jan 28: Annoying cough. Visit to the after hours medical clinic for some cough medicine.  Chest x-ray. Seeing the doctor’s concerned face as he says the words “large mass” and “tumor.” CT scan at the hospital emergency room. The words “11 centimeter conglomeration of lymph nodes that likely indicate lymphoma” and biopsy. A question from Lorelei “So, Lymphoma. Does that mean I have cancer?” Frantic request for prayer posted to facebook. Flood of responses from caring friends.
  • Sunday: Church praying over Lorelei even before the biopsy and final diagnosis.
  • Monday: Appointment with surgeon who said it would be better to see a thoracic surgeon for biopsy.
  • Tuesday: Appointment with thoracic surgeon at 11:00am (arranged via a friend on facebook) who could see Lorelei was having a difficult time breathing so he scheduled her for immediate surgery (mediastinoscopy) at 4:00 that afternoon. Surgeon emerging from the OR late that night with the report of Nodular Sclerosing Hodgkin’s Lymphoma; “the kind of lymphoma one would want delivered to them on a plate” if one had to receive some kind of lymphoma on a plate. Relief. Then panic. Who to hire as an oncologist? How does a parent do that?  At 17, Lorelei is not a child but also not an adult. Who will address her future fertility questions? Will we have time to freeze her eggs?
  • Wednesday: Lorelei asks first “Mom, am I going to lose my hair?” followed by “Mom, will I ever be able to have a baby?” Call Oncologists all day and get discouraged because the one we think we really want won’t take her cuz she’s under 18.  Finish the day feeling defeated without a plan. Fall asleep crying but afraid to let Lorelei see mom fall apart.
  • Thursday Feb 2: Wake up and read Jesus Calling and feel like God is speaking directly to me. Spirits lifted energy renewed. Get a call from the thoracic surgeon that they’ve miraculously arranged for the oncologist we want to actually see Lorelei even though she’s too young. The oncologist’s nurse had already been praying for Lorelei (goes to our church) and didn’t know this young patient they had previously rejected was the same girl. When the surgeon shared her name the oncologist set an appointment to see her the next day!  
  • Friday: Meet with oncologist. Learn both chemo and radiation are likely but we still need to stage the cancer. No matter what she will need ABVD treatment and she’s going to lose her hair. 80 to 85% odds to beat this. Resist thinking about the 15 to 20% who don’t.
  • Saturday: Shop for wigs.
  • Sunday: Worship a wonderful God who has reminded us that every detail of this journey is on His mind.
  • Monday: Meet with fertility doctor to get script for putting Lorelei in to menopause since there’s no time to freeze eggs. Endure the financial pain of learning that insurance won’t cover the $900 medication she’ll need each month for the next year but decide to trust God to handle that detail. Prepare for battle with insurance company.
  • Tuesday: Surgery again to implant port.  Pulmonary function tests.
  • Wednesday: Echocardiogram and PET scan. Bone Marrow Biopsy.
  • Thursday Feb 9: Meet with oncologist. Cancer has not spread to belly and is not in her bone marrow; Stage 2 officially. Start chemo!

1 comment (Add your own)

1. Alexandre wrote:
Aw, I never heard about these cases till now. Very very sad. Where the heck were those great "agencies" that are suppose to save crihdlen in cases such as these? Naturally, we often wonder about other humans when they show their animal or primitive nature because to many of us it is simply startling. Sometimes when I see stuff like this I often wonder if it isn't a throw back to a simpler primitive form of thinking. Something along the line of only the strongest survive or a form of culling within the family unit. Twisted yes, but still very possible.

Wed, September 5, 2012 @ 7:04 PM

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