Helen Garner's page

Welcome to Helen Michelle Garner's Web Page. It has been provided to tell people about our little girl and her journey with cancer.

December 17, 2003 - December 10, 2004

Helen and her twin brother Robert were born on December 17, 2003. All seemed well with our beautiful babies until Saturday, March 27, 2004. Helen was nursing and at 11 a.m. she stopped and I realized her left eye and foot were twitching and her arm was limp. We ended up in the Joplin emergency room and she was given phenobarbital to stop the seizure. A CT scan was done and it showed a buildup of fluid in her brain. Helen and I were flown to Children’s Mercy Hospital in Kansas City. They kept us until Tuesday night and sent us home with follow-up visits and a diagnosis of communicating hydrocephalus. Helen’s team of doctors didn’t think the pressure was enough to have a shunt put in but would keep checking. On May 5 the pressure was more severe and surgery was scheduled for May 13. Within a couple of days Helen started becoming worse - the vomiting increased, she was more irritable. We left for Kansas City on May 12 and life hasn’t been the same since. Her surgery went well on the 13th but her spinal fluid was tested and tumor cells were found. On the 14th Helen had an MRI which showed a tumor in her right cerebellum. On the 19th Helen underwent her first of many spinal taps and a bone marrow aspiration to check and see if were dealing with leukemia or something else. On the 21st we were told that Helen had ATRT (atypical teratoid rhapdoid tumor) and we were given less than a 10% chance of survival and that they would understand if we wanted to just go home and have hospice care. We were not giving up that easily and had in fact already make arrangements to see a neurosurgeon in Memphis.

We left for Memphis on May 24, met with the doctor on the 25th and Helen was admitted that afternoon to LeBonheur Children’s Hospital in Memphis and scheduled for surgery. Helen’s tumor and its two offspring were removed on May 28. On June 2 she officially became a patient at St. Jude Children’s Hospital and we will forever be grateful to the staff there for the time that we had with our little angel. The prognosis was still slim but they were willing to try if we wanted to take a chance. Helen’s was admitted to LeBonheur on June 4 for a shunt replacement and then was an inpatient for the first time at St. Jude the following week. The month of June was a tough one. Helen was feeling the effects of her 3 surgeries so close together and the pressure of the tumor cells which were coating her brain and spinal cord and she just didn’t feel good. But on Monday June 28 as we were sitting in her hospital room (she had been admitted the week before for fever) she laughed at something as she was sitting in my lap. It was the first time I had heard her sweet little laugh in a month and it surprised me at first. From there she just kept getting better and better and we all enjoyed some happy times with our little princess.

In August we had good news - no new tumors and a reduction of the cells in her brain and spinal cord. So we started on a new 10 week round of treatments. But towards the end of October Helen started having bits of pain while she was sleeping and worry set in that the next MRI would not be good. On November 4 our fears were confirmed. But we were still willing to try. We had to wait for at least 3 weeks before they could enter Helen in another study and during that time Helen suffered more seizures. On December 2 after a CT scan before a new chemo treatment was to start we were told that it wouldn’t work - the disease was just too much. Helen and I rode by ambulance home on December 8 and we lost our precious girl just two days later.

Journal

Friday, August 15, 2008 7:58 AM CDT

I know it's been a long time since I have updated. Life has been a little on the crazy side this summer. Darryl's secretary was on maternity leave during the month of July which meant he needed free temporary labor. Since she went into labor which was stopped at the end of May, it also added to a craziness in June because I knew she could go into labor and it wouldn't be stopped at any poing. With grandparents helping Robert didn't have to go to the office every day but he did go part of the time and we are still not wanting to be very far away from mommy at any point and time. Moving on...

The Olympics are on and I've been watching as many events as I can. I cannot believe it has been 4 years since I last watched the summer games from our apartment in Target House while we were in Memphis. I remember one of the days that Helen had a radiology procedure done - I can't remember exactly which one but she was kicking those little legs (which would be the last body parts to stop moving whenever they sedated her - when they stopped, she was out!). I was in the room until she became sedated and talk turned to the games. It was during the swimming part of the Olympic games - one of the nurses said, we've got us a future Olympic swimmer here with the way she can kick those legs. What a way to give a parent hope that my child will beat this disease. They wanted to believe it too - they want these kids to win the fight for their lives - that is one of the many things that sets St. Jude apart from other hospitals - they all care and want these kids to win. I wish Helen could be here and watching the swimming and gymnastics, Robert is watching some of the events with me. The other night while watching the swimmer, the announcer called Michael Phelps Superman, and that of course, got Robert's attention. Robert says that Michael is really Aquaman though since he can swim like he does. Robert will also watch the gymnastics some, what he does watch he likes and says he might like to learn how to do that. I thought he might, he is always doing moves that he likes to show off. So hopefully I can get him into a gymnastics class at some point in the future.

This is long so I'll update soon about our trip in May to Disney.

Thanks for still checking on us.
Love, Nancy

Hospital Information:

Home:
13113 Marina Del Rey
Neosho, MO 64850
417-451-7751

Links:

E-mail Author: n-garner@sbcglobal.net

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