About Amanda and her family

Amanda is a beautiful 18 year old girl, diagnosed in October 2001 with Alveolar Soft Part Sarcoma (ASPS), a very rare cancer that feeds off her blood as it grows into deadly sacks. Amanada has the only known case of this type of cancer in Canada and among 20 reported cases internationally. Only one percent of cancers are sarcomas and Amanda's type of cancer in her lungs and thighs is only one percent of all those. Because it is so rare, there has been little research conducted on this type of cancer.

Last summer (2001) Amanda found a lump on her thigh. Initially, a clinic doctor dismissed it as natural fatty tissue. It wasn't until the growth was removed and tested in the fall, that it was diagnosed at alveolar soft part sarcoma (ASPS). In December 2001, lumps in Amanda's lungs were removed. But in January 2002, just two weeks after the surgery, the tumours returned to Amanda's lungs. As the family was told by the specialist that it could take 5 to 10 years before a relapse, this was devastating news. And in the midst of her treatments, Amanda lost her grandfather to cancer in April.

Amanda and her family returned to North Bay in erly June as there is a 6 month limit for families staying at the Ronald McDonald House in Toronto. Amanda has been participating in a clinical trial which required her to travel to Sudbury 3 times a week for chemotherapy and once a month to Toronto for testing. This has been extremely hard not only on Amanda, but also her family.

Amanda's parents drained their family savings (including their son's college fund) to be at Amanda's side last fall over a duration of 8 months in Toronto, and eventually had to close down their roofing business. Both parents are struggling with their own health issues -- Mike from a badly injured knee and Janette from angina. (Mike is waiting for approval on the Ontario Disability Support Program.)

Ever since their return to North Bay, Mike and Janette have had to struggle to keep a roof over their head, a vehicle on the road (their vehicle is at a garage because the family does not have the funds to pay for repairs yet), food on the table and a telephone line (it was disconnected by Bell Canada in August because of an outstanding debt.)

It's heatwrenching to watch the challenges this young girl and her family have had to endure along with the frustration of having to depend on our "social safety network" to help. It's been one continuous battle with bureaucracies and agencies (and their staff's voice mails) who have reached the limit of what they can offer this family because of limited funding dollars.

The grace and the dignity with which Amanda and her family, parents Janette and Mike Minderlein, along with twin brother Matthew, and her 19 year old brother Jeffery, is a testamont to the love this family holds for each other as they have struggled for appropriate access to medical services for Amanda and the survival of their family.

This is an average Canadian family.

Ask yourself what you wouldn't do to support your child through a life-treatening illness?

Amada was quoted in the North Bay Nugget (August 20, 2002) in an article by Dave Dale, as saying that:

"Fighting cancer is like being trapped in a mystical novel laced with drama and suspense... a world in which wizards are doctors and heroes just want to survive."

If you are in a position to help Amanda and her family,
please consider a donation to the Amanda Fund at
Canada Trust or Caisse Populaire.

ASPS is a malignant soft tissue tumor. Malignant soft tissue tumors are divided by the oncologists into rhabdomyosarcoma and "all others", or "non-rhabdomyosarcomatous". They do this because apparently these two groups behave differently from each other. Rhabdomyosarcoma (of which there are many subtypes, including, confusingly, alveolar rhabdomyosarcoma [don’t mix this up with ASPS – they are completely different]) seems to respond to chemotherapy in a better way than non-rhabdomyosarcomatous tumors. Source