When A Child Dies

By Jody Cline, Kerry Chellsen’s Mom

When Kerry first was diagnosed in July 2000 with a rare pediatric cancer at age 23 she absolutely refused to believe that she was going to die.  She focused on her treatment and dreamed of what she would be doing when she would recover.  Her attitude was very positive.  However, as her mother I had a premonition from the very first diagnosis of cancer, before we even knew what type it was that this would be fatal for my child.  Perhaps it was fear.  Kerry’s belief was contagious and soon I was hoping that she would in fact be one of the rare patients who recover from desmoplastic small round cell tumor or DSRCT. 

Despite Kerry’s focus on the future, she also believed in living to the fullest throughout her treatment.  She didn’t let her extensive chemo treatments defeat her.  She was active in the young adult’s group at the hospital and planned trips and special activities for her “good week” between chemo’s. 

Kerry had seven rounds of high dose in-patient chemo followed by tandem stem cell transplants.  Nine months after diagnosis she had no detectable cancer in her CT scans.   During this time two of the friends that she met in treatment died.  She talked a little then very hypothetically about what she would want if she was ever in their situation and at that time she very much wanted to be in the hospital when (if) she died.  That was where she felt safe. 

Kerry was cancer free for 9 months, unfortunately her cancer recurred and she began chemo treatments again.  Although treatment was more difficult the second time through, she still held on to the hope that she would recover.  Slowly, however, she became less dependent on the hospital setting and felt more comfortable at home with me doing much of her care.  By this point we had experienced many aspects of her care (IV TPN and IV Antibiotics, Dressing Changes, GCSF Injections, and of course daily oral meds and mouth care) outside of the hospital.  I believe she grew to feel that she could be safe at home and did not need to be in the hospital setting.  During this second course of treatments, Kerry’s cancer continued to respond until January 2003.  Although she continued with treatments, her cancer was not responding.  Finally in March it began to become clear that she would lose this battle.  I was very afraid as her parent and looked at what loomed ahead as a long dark tunnel with all sorts of possible scary things that would happen to my child along the way.  I was so afraid that I would not be able to protect her from agonizing pain, from a nose bleed that wouldn’t stop, or some other horrible event.  As a parent I felt very afraid. 

Although Kerry held on to hope, she began wanting to be free of being in the hospital so much and wanted to be able to be at home.  We began planning with her doctors how this would be possible.  It helped that by this point I had a great deal of experience giving care at home and felt comfortable administering IV medications, and giving injections.  I began to see that we could plan a way for Kerry to make the journey through end of life without horrible pain.  Her needs could be addressed. Kerry’s doctors were particularly attentive to her comfort and desires.  She had a severe problem with abdominal ascites which was causing constant nausea, pain and vomiting.  A plan for surgery was developed to insert a shunt with a pump to help route the excess fluid back into her bloodstream.  This was far preferable to Kerry than the alternate solution of an NG tube.  She always cared about how she looked and we knew that having an NG tube would be awful for her.  Kerry’s doctors tried many approaches and listened carefully to her reports about how she felt.  They adjusted pain medications as needed and tried new combinations until we found a solution where her nausea was contained and she was alert enough to be able to visit with friends and family.  

Kerry had most of her treatments at City of Hope in Southern California although we lived in Oregon .  When Kerry decided that she wanted to return to Oregon , she was given a portable morphine pump so she would be able to tolerate the plane trip home.  We flew back home to Oregon on May 9^th, 2003 .  Kerry’s friends visited her daily and we had great support through home nursing.  Kerry was not ready to be in hospice care, and was allowed to continue with home nursing although the difference was probably a technicality.  She did receive TPN since she had stopped eating until her kidneys could no longer handle that much fluid daily.  During Kerry's final two weeks at home the visiting home health nurse came three times a week and stayed about one hour each time. The home health nurse did portacath needle changes and drew blood for labs. The other care was provided by our family.  I was primary caregiver, but we all took turns helping with Kerry's comfort.  She had two younger sisters living at home at the time and her Grandmother and Aunt Katie came to help too. Kerry was able to get up and use the
bathroom with help until the day that she died.  

One difficulty that arose fairly quickly was that Kerry was under the care of our family doctor in Oregon and I believe he was not equipped to supervise her care.  When he was reluctant to make pain medication adjustments that both I and her home health nurse felt were needed, I decided to have Kerry see an oncologist in Oregon .  He was very supportive and I did wish I would have planned that Kerry be under his care as soon as she came to Oregon .  Making a change of doctors at that point was very difficult for me especially since our family practice doctor was most unsupportive and accused me of trying to keep Kerry alive past what was appropriate by continuing with the transfusions that her doctors at City of Hope had ordered.  He had not seen Kerry in person since we arrived in Oregon and I don’t feel he knew her wishes.  He was basing his belief on something other than personal experience with Kerry’s desires.  Kerry told the home health nurse very clearly that she was not ready for hospice and I was truly trying to fulfill her wishes as she approached death.  The new doctor, the oncologist, saw Kerry on May 22^nd and told us that the end would be very soon.  Kerry was still alert and on the ride home from the doctor’s office she said, “I don’t care what he says, I’m just going to keep floating along and enjoying life!” 

I called family and friends and so began a weekend of visits over Memorial Day Weekend.  Kerry seemed to enjoy all the activity and was coherent until the afternoon on the day of her death.  The home health nurse who visited that day was very caring and supportive.  I never felt afraid of what was happening.  It wasn’t a dark tunnel after all.  In the afternoon Kerry slipped into sleep and died very peacefully at 11:39 PM as we were gathered around her, sitting on her bed and talking about how much we loved Kerry and how she had touched each of our lives.  It was truly a perfect death, if there is one.