Community rallies around Lovis

Three-year-old Lovis has diffuse intrinsic pons glioma, or DIPG, a brain stem cancer that is usually terminal within a year of diagnosis.

Lovis is currently at home with her family after receiving chemotherapy and radiation at the IWK, but is scheduled to return to hospital later this month. Her parents want their ill daughter to retain her privacy, but are extremely moved by community support.

A successful BBQ was held last week outside the Royal Bank in Wolfville and Thursday, July 30 there will be a benefit concert at 7 p.m. at Festival Theatre. Proceeds will help cover the cost of medication, treatment, care and frequent commutes to the IWK Hospital in Halifax.

Community making concert happen “What a generous and caring community we live in,” says organizer Karin Nakamura. Musicians who have volunteered to perform so far include: Heather Kelday, Sarah Pound, Daniel Heikalo, Cathy Arsenault, Sophie Berubé, Peter Williams and friends.

Acadia University has donated the use of the theatre. Printing of posters and programs has been secured at no cost and a good deal obtained on the necessary technical support and equipment.

A silent auction will be set up before the performance and during intermission. They will include: tickets for Deep Roots concerts, a night at a Grand-Pre inn with a meal at Restaurant Le Caveau.

Local grocery stores, a café and a bakery are donating refreshments to be sold at the concert, Nakamura added.

Stephen Wilsack, of Innovative Computer Systems, has offered to produce a DVD of the concert as a keepsake for the family. Sarah Pound and another volunteer put up posters from Grand-Pre to Coldbrook.

Volunteers help family at home

Meanwhile, Nakamura says a volunteer network, coordinated with Nancy MacLean, is allowing the family to spend quality time together. A support team has taken over the lawn and garden care on a rotational basis. “We also have a ‘Rabbit Lady’ who is looking after the bunnies and ensuring the cage is cleaned regularly,” Nakamura said.

Food captain Lisa Mitchell has been marshalling meals in Halifax and at home and a volunteer repairman is looking after fix-it needs.

Others donated stimulating and fun activities for Lovis and her sister. Vehicles have been loaned, drives contributed and a cell phone arranged.

Nakamura says the family, “has told us how moved they are by the overwhelming outpouring of love and support shown them by their friends and community. Your kind deeds have allowed them to remain focused on the children.”

Tickets for the July 30 concert will be sold at the door for $15 and $12 for students and seniors. Children under five will be admitted for free.

What is diffuse intrinsic pontine glioma?

DIPG (diffuse intrinsic pontine glioma) is a rare form of brain tumour that usually strikes children aged four to 10. Symptoms include: unbalanced walking; double vision; inability to close the eyelids completely; dropping one side of the face; and difficulty chewing and swallowing. Unfortunately these symptoms usually worsen rapidly as the tumour grows.

Lung cancer has a survival rate of 80 per cent if caught in the early stages. Breast cancer typically has an 80-90 per cent survival rate. Leukemia has about 50 per cent survival rate. But less than 10 per cent of DIPG children will live longer than 18 months after diagnosis.

DIPG is one of the most resistant of all cancers to chemotherapy treatments. The brain stem controls our vital functions: face muscles, upper body movement, balance, nausea, swallowing, heartbeat and breathing.

It is impossible to remove a tumour in this area, even with the latest surgical techniques, because the cancer cells grow in between and around the brain s