Tuesday, December 21, 2010

A Teen-Ager Who Just Wanted to Live

 I was called by my supervising physician and advised to walk across the street to Children’s Hospital and pick up the medical records of a new patient coming into the leukemia clinic.  I retrieved them and brought them over for him to read.  The following day we saw our new patient, a 16 year old teen-ager with acute lymphocytic leukemia. 
I meet her in the leukemia clinic on the 7th floor.  She had gone through a lot of chemotherapy to try to treat her leukemia. 
She had relapsed again after going into remission.  This was her second relapse.  And Children’s had advised her and her parents that they didn’t have anything left to give her to try to induce a second remission.  So she had discussed it with her parents and wanted to come see us across the street in hopes that we could do something for her.

We had come a long way with treating cancer, especially leukemia.  Sixty years ago it was a fatal disease, and now today over 50% of the patients are cured of their acute lymphocytic leukemia.  Our knowledge of what happens on the cellular and genetic level which allows a normal cell to mutate into a cancer cell has vastly improved.  We are now able to follow a normal cell as it transforms into a malignant cell.  This change involved gene activitation, immune system dysregulation and finally mass reproduction of the malignant cell. 

“Good afternoon, I’m Sharon, I’m one of the physician assistants who works in this clinic.  You must be Lisa?”
“Glad to meet you.  After I see you, I’ll take you down to see Dr. Anderson, the physician you were referred to.  I’ve read through your  Children’s records and I just want to review them with you to make sure that I haven’t missed anything.   Okay?”
“You were first diagnosed with leukemia when you were 11 years old.  The induction chemotherapy was high dose alpha interferon, followed by vincristine and methotrexate, is this correct?”
“How long did you stay in remission?”
“About three years.”
“And when you relapsed, what did they use to put you back in remission?”
“Vincristine, L-aspargarine, and Ara-C.  I stayed in remission for about 18 months and then relapsed again.  That’s why I’m here.  I’m hoping that Dr. Anderson can put me back in remission for good this time.”
“Well, that’s what we plan on doing.  Now let me explain what will happen to you once we admit you for your chemotherapy, how we’ll be doing your bone marrow biopsy and the like.”
“Once I finish with going over everything with you and answering your questions, I’ll take you down to Dr. Anderson’s office and let you meet him.  After that I’ll take you up to the in-patient floor where the nurses will start your admission process and then call the bone marrow biopsy nurses to come up and do your biopsy.”

The best chance of going into remission from acute lymphcotyc leukemia is after the first course of intensive chemotherapy.  If a patient relapses after this, their chances of having a long lasting remission or even a cure drops off quite a bit.  That is why after a patient achieves a second remission, they are referred for a bone marrow transplant, which then gives them the best chance of a long term cure.
But going through a bone marrow transplant is not easy, nor is it inexpensive.  Bone marrow transplants require at least several weeks in the hospital as the patient undergoes intensive chemotherapy, whole body radiation and then waits for their bone marrow to regenerate itself after they have received their donor’s bone marrow cells.  After this the patient has to stay on anti-rejection medications and hope that they don’t end up with having to deal with nasty fungal infections in the meantime.

Over the next several weeks, we were able to get Lisa back into remission with a different chemotherapy program.  After spending several weeks in the hospital, we discussed with her the option of having an allogenic bone marrow transplant.  We knew that would be her best option of going into remission and staying in remission. 
After finding out that her family members were not a suitable match for her, we widened our search by putting her on the national bone marrow donor list.  Unfortunately there wasn’t an immediate match there either. 
We continued giving Lisa out-patient maintenance chemotherapy to maintain her remission status, as the national bone marrow registry kept coming back with no matches for Lisa.
I continued to see Lisa in clinic and took care of her, following her blood work results, addressing her infections, and keeping her encouraged about our national bone marrow donor search. 
Eleven months after I started seeing Lisa in clinic, she came in for her usual follow-up, and I could tell something was wrong.
“Sharon, I just don’t feel good.  I have a fever of 102 F this morning and I’m so weak.  What’s wrong with me?”
“Well, we’ll figure that out shortly, Lisa.”
I ordered stat labs on her, did a quick physical exam and started writing up her admission orders. When I saw her blood results I knew that we were at the end of the road with her.  Her blood work came back with 99% blast cells, there wasn’t a single platelet or normal cell in the midst.  This told me that her bone marrow had totally transformed over to abnormal leukemia cells and there was nothing we could do.  I quickly finished writing my admission orders and then paged Dr. Anderson.
I advised him of Lisa’s blood work and he told me to have her admitted to the intensive care unit.  He would meet with her and her parents there. 
I went into the clinic exam room and sat down to talk with Lisa and her mom.
“Lisa, your blood work came back and you’ve relapsed again.  Dr. Anderson wants to have you admitted to the intensive care unit and he’ll be waiting for you there to talk to you.  You don’t have any white blood cells in your blood work which are able to fight off an infection and that’s why you are running a fever.  I’m really sorry.”
“I’m sorry too.  I really hoped something could be done for me.”
“Dr. Anderson is probably waiting for you and your mom by now in the intensive care unit, I’ll take you there.”
I took Lisa in a wheelchair down to the ICU, where Dr. Anderson meet her and her mom.  I could tell by the look on his face that he didn’t have anything else to offer her.  He sat down and told both of them that he would make sure that Lisa was made comfortable and that she wouldn’t suffer.  He also told her it that it would probably be only a few hours,  maybe a day or so and her suffering with leukemia would be over.
Lisa cried very quietly and silently accepted her fate. 
Within a hour, Lisa was lying in one of the ICU beds, an oxygen mask on her, with a morphine drip going.  Her father by that time had arrived and both of her parents were holding her hands as she over the next few hours quietly slipped from this life to the next. 
Lisa’s mother invited me to her funeral, and I decided to attend.  There were a lot of other teen-agers there.  Her youth pastor stood up and gave the eulogy, talking about how Lisa had encouraged other teens, shown them how to have courage in the face of adversity and in the end had won the final battle, for she was now in heaven enjoying her new found health and happiness.

As medical providers we generally don’t attend our patient’s funerals.  Lisa had been my first patient who had died on me while I was working in the leukemia clinic.  There would be others, but she was my first.  My supervising physician told me that he never forgot his first patient who died under his care from leukemia.  He says patients who die stay with you and make you work that much harder on your research to find a cure for such a devastating disease.  I couldn’t have agreed more with him.  I’ve never forgotten Lisa, and having taken care of her has made me a better provider as I remember how important it was to give her the ‘human touch’ every time I saw her.  Lisa always told me that she appreciated the fact that I wasn’t afraid to hug her.
I kept in touch with Lisa’s mom over the next year.  Her parents went through a very rocky period with their marriage, now that Lisa was gone and her mom no longer had to be concerned about taking her to all of her physician appointments, watching over her chemotherapy programs, and all.  It took a year for Lisa’s mom to finally be able to clean out her daughter’s room and give some of the things away that Lisa cherished.  It was during this time that I received a call from her, asking me to come over and have tea with her. 
When I arrived the following Saturday, Lisa’s mom met me at her front door.  We spent several hours together, remembering Lisa and sharing our tears with each other.  Then her mother took out a gift wrapped small package for me to open.  Inside was a journal book and a new calendar for the upcoming new year. 
“Lisa and I knew you always liked to write, and spent time writing in your personal journal books.  So when I came across this journal book, it reminded me of you, but the front cover reminded me of Lisa.  She always loved floral gardens and bending down to smell the blossoms.  And here on the front cover of the journal was a little girl smelling the floral blossoms.”
“Thank you for thinking of me and sharing a part of Lisa with me.  Every time I write in this journal I’ll be remembering her.”
I thought of Lisa and her mom frequently over the next year as I used the calendar I had been given and wrote in the journal.  I never saw Lisa’s mom again and always hoped that she had moved on to live her life the way she wanted to. 


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