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, June 26, 2009 7:07 AM CDT

The final total - $1,318.65 - raised in your memory for the trike-a-thon. I'm so proud of your brother and your friends. I've ordered the prizes and now we'll plan our Wondertime party. We love any chance to be together.

Robert picked out the cake this year for Father's Day and my birthday. Since they were back to back this year - daddy and I shared the cake - it was an Indiana Jones cake - complete with IJ and the boulder he's running away from. Robert had 2 small pieces with lots of icing and the toys and daddy and I shared the rest.

We only shared one Father's Day with you and mommy didn't do very much to make it special. I wish I had. You were still so sick and daddy didn't want to move you around so we just laid low that day at the Ronald McDonald house. I think I did lots of laundry and daddy just laid around with you and Robert. On my birthday, you were admitted to the hospital with fever from an ear infection. Then on the 24th - it was a Thursday, daddy moved us from RMH to Target House, it took him most of the day. The staff was really good to mommy that day. The child life specialist sent a volunteer in to help mommy for a little while and she played with Robert for a little while and maybe took him out and about on the floor. The nurses and aides were really good too. We were in the room right across from the station, so if they could one or both of you crying someone would come in and check and see if they could help. We met Miss Beth that day when she came by with the happy cart. She was in college then, a pre-med major with a dream of becoming a doctor on staff at St. Jude and her dream will be coming true next year sometime. She was a big part of our lives the rest of the summer, until she had to leave and go back to school.
She and mommy just reconnected on Facebook, hopefully this time we won't loose touch.

Robert and I are off to Miss Shari's today, I hope to scrapbook and Robert wants to play with spiky-haired Luke - he has to separate his friends name Luke out. I'm sure you and Hannah would have had fun playing girl things on our trips to visit there. Tomorrow we'll go to a birthday party for the other Luc and Olivia too. A bug hunt and the tea party - which would you have preferred? Hopefully the tea party - that is what I would have wanted to share with you, lots and lots of tea parties, we could have used the tea set I used to use with Tamara and Susan when we were little girls - now we are all in our 40's and still keeping in touch.

The power of friendship is important - thank you to all of those that still check on us. You coninue to help us on this journey that pediatric cancer forced on us. The journey of life without Helen.

I miss you baby girl,
Love, mommy

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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