Carli's Page

Welcome to our webpage designed to keep people updated about our daughter/granddaughter/niece/friend Carli Newman. Carli was diagnosed with lymphoblastic lymphoma (non-Hodgkin lymphoma) on December 3, 2004. The tumor around her heart responded well to chemotherapy, and she completed her clinical trial chemo December 1, 2006. Carli was officially in remission--woohoo! On December 6, 2006, Carli was diagnosed with PCP pneumonia (Pneumocystis carinii). She was admitted to Children's Hospital for 4 weeks and spent her 6th birthday as well as her 4th in the hospital. She made it through 2007 monthly followup cancer free! She continues to enjoy good health through 2008 and into 2009.

Organizations that have touched our lives and so many others with childhood cancers:
www.rmhcseattle.org, www.candlelighters.org, www.curesearch.org,
www.leukemia.org,
www.terryfoxrun.org,
www.caringbridge.org,
www.livestrong.org


We invite you to contribute a great gift!

love builds up the broken wall
and straightens the crooked path.
love keeps the stars in the firmament
and imposes rhythm on the ocean tides
each of us is created of it
and i suspect
each of us was created for it
~Maya Angelou

Journal

Monday, June 22, 2009 2:47 PM CDT

South Whidbey Relay for Life, June 19, 2009 - Luminaria speech

Thank each of you for being here. I was asked to speak a bit from a caregiver perspective, but I will start with some background. Many of you here know my family's story.

The day after Thanksgiving 2004, I rushed my 3-year-old daughter to Whidbey General because she was struggling to breathe. This was her 3rd visit to the ER within the month and she was believed to have asthma. This time when a chest x-ray was taken, I was told, "You're going to Children's Hospital." When we arrived at midnight in the Children's ER in Seattle, the clerk asked "Did you fly?" I had driven, but I think any parent would understand how I got there so fast. I had no way of knowing we would be living in Seattle for the next 9 months. For our first week in the hospital, my daughter struggled to breathe while doctors debated about the type of pneumonia they believed she had. It was not until they drained a liter of fluid from her lungs that they saw a huge tumor surrounding her heart. She was diagnosed with non-Hodgkin lymphoma, and we were moved to the cancer floor of the hospital. Carli spent her 4th and 6th birthdays and Christmases in the hospital and endured 2 years of chemotherapy and complications.

Now 2-1/2 years after treatment, 8-year-old Carli is thriving and moving with joy and hope into her future. I, however, am recovering emotionally and socially with some symptoms of post-traumatic stress. I have been affected to the core of my being by my cancer caregiving experience. One way I look at it is the time I spent cancer caregiving was almost as long as my college degree.

How has cancer caregiving changed my life? At first my own health deteriorated (high blood pressure, weight gain, fractured teeth from tension in my sleep, lack of self care and loss of health insurance), but as time has gone on some of these things are shifting in the right direction.

Another way my life has changed is that I have become listed on the bone marrow donor registry and donate blood whenever possible.

Then there is advocacy. I currently volunteer for 3 cancer organizations. Like many survivors, the only thing I find I can do with my experience that eases my psychic pain is advocating for those on a similar or rougher road. I speak for those families who cannot act because their grief is too great. I raise awareness about those families who I know are setting foot on the strange planet of a children's hospital oncology floor at this moment around the country, just as I did for the first time 4-1/2 years ago. And I support parents facing their child's life-threatening illnesses and being forced to make "non-choices" to administer what I like to call HazMat treatments in order to save their child.

A nurse practitioner can tell a parent that what they are going through with their child on high-dose steroids and neuropathic pain from chemo is "normal." A grieving family member can applaud your efforts to care for their grandchild or niece. But being in the presence of another parent who knows exactly what it feels like to not sleep longer than an hour at a time for 35 days to deal with their child's ravenous steroid hunger, who knows what it is like to spend 4 hours a day trying to get their child to swallow medicine, who knows what it is like to not see a smile from their 4-year-old for an entire month - that is someone who can really reassure you.

Any parent has occasional nostalgia for their child's early years, and for me that nostalgia is accompanied by a profound sense of loss of innocence, my own included. I wish I never knew about the world of childhood cancer. But now that I do, my only choice is to act. Speaking out to congress, signing petitions, letters for better treatments, more research monies, these are my gifts. Gifts for Katie, age 11, Kaitlin, age 7, Ronni, age 9, and Joe age 20, who shared meals, fears, laughs and time with me and my daughter on her journey. Gifts for their parents who will never be able to give them a hug again. I light luminarias in their honor and thank them for helping me continue to be a voice for a better day.

I am grateful to Relay for Life for being one place I can come that holds my cancer experience and lifts it up in shared hope.

Hospital Information:

Seattle Children's Hospital
4800 Sand Point Way NE
Seattle, WA 98105

Links:

E-mail Author: eyesandhands@gmail.com

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Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.