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BY KATHY LATOUR | MARCH 11, 2011
The National Comprehensive Cancer Network is holding its annual meeting in Hollywood, Florida, this week, and, as is their tradition, they begin with a panel on caregiving moderated by ABC newscaster and melanoma survivor Sam Donaldson.
This year's panel comprised nine individuals, including Jill Snow, wife of Tony Snow, who died of colon cancer and was the former White House Press Secretary for President George W. Bush; Jai Pausch, wife of Randy Pausch, PhD, acclaimed Carnegie Mellon University professor and author of the internationally best-selling book, The Last Lecture, who died of pancreatic cancer; Liz Scott, the mother of Alex Scott, who died at 8 of neuroblastoma after creating Alex's Lemonade Stand to raise funds for research into childhood cancer.
The panel was too large to get into any depth, but I couldn't help but think that for many of the hundreds of oncologists and oncology fellows in the room, it was probably an eye opener to hear some of the pearls dropped in the discussion. For example, Liz Scott recalled how they were told their daughter had cancer. The Scott's had taken Alex to the emergency room when she was 9 months old, knowing something was wrong. After hours of waiting, a woman came out and gave them a box of tissues and told them the doctor needed to see them. Others talked about getting the message about how bad the cancer was from body language, when doctors would not meet their eyes.
Jai Pausch wondered why doctors didn't tell her that there might be a time when Randy would ask to die. She had no preparation when, near the end of his life, Randy told her he didn't want to be a horror show for his three small children. Jai was caring for Randy at home, and he told her that he wanted her to give him an overdose of morphine to kill him.
Jai said she told him "no" because they had three children and who would raise them when she went to jail for killing her husband. The audience laughed. Jai did not.
I think I felt the strongest empathy for the mothers on the panel as they talked about their children and how they tried to protect them and communicate with them. For some, such as Jill Snow, it was a challenge keeping the media at bay and trying to keep the children up to date but not frightened. Jill also offered one piece of wisdom for the oncologists in the audience when she talked about her exhaustion, and, when it became apparent Tony was going to die, she found herself with no emotional strength to tell her children. The oncologist, she said, asked if he could help by telling the children. She agreed and watched as he explained very sweetly that their father's heart was very tired of fighting and was going to stop soon.
Despite the fact that there was little time for questions and the panel was too large, I am so glad NCCN honors those who have become known as "the other survivors."
Donaldson was, as always, a great moderator, moving things along and offering quips and quotes, such as this one in response to one of the panelists talking about their life plans when they got the news.
"If you want to hear God laugh," Donaldson said, "make a plan."
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BY KATHY LATOUR | MARCH 8, 2011
It is not supposed to be. No mother is supposed to outlive her child. It seems that the planet is off its axis when this happens. How can it be? And yet it is. Last fall the CURE staff learned that Delaney LaForest had entered hospice at her home in Indiana. Delaney is a remarkable child. Diagnosed at 6 with Ewings sarcoma in the eye orbit and sinuses, she had received massive radiation to keep her alive. We met Delaney, then 13, at the Extraordinary Healers Award at the Oncology Nursing Society Meeting in May, 2009. Delaney's mom Renée wrote the winning essay about Delaney's oncology nurse, Chrissy Wilson. The San Antonio event was a break for Renée, sister Emilie and brother Josh, and we were thrilled to provide it. This family had been through a lot.
Then cancer came calling again. Delaney complained in April, 2010 of a sinus infection and, when it wouldn't go away, Renée took her for scans. But she told me that Delaney already knew the cancer was back. This time it was a sarcoma in the nerves, one that is recognized as induced by radiation. The family was devastated, but Renée says that she wouldn't have done anything differently because the radiation and chemotherapy drugs saved Delaney's life and gave her eight years she would not have had otherwise. Delaney entered hospice in fall of 2010.
As she has moved toward the end, Renée says Delaney remained the very special child we had all come to know with a personality much older and bigger than her years. Right now the goal is for her to live to March 13 and Delaney's 15th birthday. But it will be close. The reason I wanted to write about this is to share with you one child's view of death that I hope will touch you as it did me. In her Caring Bridge note this week, Renée told us that Emilie, who will be a senior, was having a hard time one night last week and was upset with her mother when she went upstairs to bed. I'll let Renée tell you the rest.
When I finally went to bed around midnight, I was shocked to hear whispering in my room... Delaney in her spot, with Emilie next to her. The sweetest voice I've ever heard saying ... "Emi, it's ok... don't be sad... I'm going to a better place where I won't be sick and hurt anymore. I'll go and prepare a place for you that is beautiful so you can be with me and grandpa one day."Renée said the two girls spent some more time together saying goodbye.
It doesn't seem fair that children have to die, but maybe it's to teach us about life. I know that's what Delaney has done for me.
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BY KATHY LATOUR | MAY 17, 2010
Last week we held an annual event that coincides with the Oncology Nursing Society annual congress. This event honors extraordinary oncology nurses chosen by our readers, who write essays about why we should choose their nurse for the honor. Each year the CURE editorial staff struggles to choose which of the essayists have told the story of their nurse and their "above and beyond" the best.
The event is a celebration of nursing with food and a celebrity mistress of ceremonies. This year actress and singer Ann Jillian filled the role by entertaining and inspiring the nurses as she spoke from the heart about her own cancer experience before helping to hand out the crystal awards given to each nominee as their nominator read his or her essay to the hundreds of assembled oncology nurses from across the country.
This year winner Valerie Bosselman wrote about Dorothy Wahrman, the nurse who cared for her daughter Megan during a recurrence of adrenal cortical carcinoma when Megan was in her mid 20s. It was a gut-wrenching essay about a mother's worst nightmare, the death of a child, and you can read it in the summer issue of CURE.
She wrote of the presence of Wahrman during Megan's chemotherapy and how the nurse was able to transcend the typical nurse relationship with a sixth sense of when Megan or Valerie needed her. Indeed, Valerie wrote of Megan's final hours in a hospice facility and how Wahrman showed up just before they induced a coma to help manage Megan's increasing pain.
She didn't call, she just showed up--at exactly the right time to bid this young woman goodbye.
When Valerie left the stage, I felt strongly that Megan was with her mom at that moment, inspiring her and motivating her to tell the assembled nurses how much their love and care means to those going through the cancer journey.
After the celebration Valerie and I talked about the feeling we both had, and Valerie told me that this award and the ability to tell Megan's story helped her feel some relief and that something positive could come from such a tragedy. She is now working on a book about Megan's journey.
For those of us at CURE who were honored to be there while Valerie read her winning essay, it affirmed our role in the lives of those with cancer and the people who care for them.
It was a very special night and one that no one who was present will forget.
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BY KATHY LATOUR | DECEMBER 4, 2009
In my 23 years as a college professor, I often spoke of my cancer experience, which made me the go-to faculty member for students who learned a family member had been diagnosed with cancer.
Often the students came to me in distress, having just received the phone call about the diagnosis – usually followed by a parent telling the child that they didn't want to call them and disturb their studies and to please keep working and not come home.
What this usually meant for the student was significant psychological pain and distress. They often wanted to go home to be with the family during this time and needed my help in finding a way to convince their parents to agree.
It was a hard question for me, particularly as my daughter moved on to college and I began to understand the need to protect her life from my life so she could focus on the job at hand.
But, ultimately, I have to agree with the students. How can they be expected to study when someone they love is suffering? Just the not knowing was so distressing to a number of my students that they couldn't go to class, much less concentrate. I think that if a parent imagined getting such a call, they would realize how absurd it is to tell a child that someone has cancer but they shouldn't worry.
Cancer is a huge, life-changing event for a family, and the power of the experience in a young person's life should not be underestimated. What is a semester at college, which can be repeated, compared to the learning and self-understanding that comes from being with your family in such a stressful time.
What is more important? Sophomore English or being present to feel the life changing experience that is a family in distress.
Life isn't just about going to class. Learning isn't just about tests.
Of course, every family has its own dynamics, some of which make the experience easier -- or harder. But it will all come down to communication. Ask your child what he or she wants to do and then let them know what you feel. Find a compromise, work out a solution that everyone agrees to.
Also remember that in step families, a child may view the stepparent like a parent, adding a complication to an already difficult situation and often putting the child in the middle.
I remember one young woman who was so distraught about her step mother's cancer diagnosis that she could barely function. She wanted desperately to go home to be with her father and stepmother but had been raised by her mother, who also paid for her college. She was terrified of hurting her mother, but wanted to be there for her father and stepmother.
I encouraged her to talk to her mother and be honest with her about the conflict she felt, which she did. Her mother was very supportive of her need to be with her father and worked out transportation for her to visit. The crisis brought them all closer in the end.
Adolescence and young adulthood are a hard time for children to cope with cancer. They are trying to separate from the family but still need the connection for their own sense of security – often in ways even they don't understand.
The only thing a parent can do is be honest, listen, and not try to protect them from life
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