Loocie's Sarcoma Journey Thoughts, Feelings & Snippets.

[the H team]

I BELIEVE IN YOU!

[the H team]

[the H team]

[the H team]

[oscarandme]

Thought this would make you smile... I am so glad to hear day one went well, rest little one and don't ever forget that we are here cheering for you and sincerely care and thinking of you and wish we could be there to hold your hand. We are behind you one by one with positive thoughts, prayers, virtual hugs, vitual hands holding yours and all tucked into your big beautiful heart and cheering in the background and here to read and listen and share tears and laughter with you. Be strong little one and we are thinking of you fondly as always.......

[electric_viking]

My prayers are with you, Loocie.
I'm here for you.
Sending big Viking hugs your way.

[gracesmommy]

thinking of you always loocie *hugs*

[coyote00]

Good morning Loocie. Thought I would drop by with some flowers and wish you a wonderful day

[Natalka]

My prayers continue for you, and I send you HUGE hugs!

[SillyLoocie]

Neurofibromatosis, my goodness what a tongue twister! A disease, a disorder and something I had never heard of until 2000. I was turning 42 that year and was finally getting some answers to why I had been living with jarring, jolting, electrifying, non stop pain. I had been living with this pain as my constant companion for so long that it almost defined me. Walking was such an effort, as the pain was in my right calf and foot, but I had no choice but to keep on going.

When a MRI revealed I had a potato sized tumour in my right posterior tibial nerve, I was dumfounded. In February of 2000, I had the tumour removed at St. Michael’s Hospital in Toronto. Finally relief, and I thought that was it and my life could continue. Not so fast though. It was malignant.

I was referred to the Peripheral Nerve Clinic at Mt. Sinai Hospital where I was told the tumour would most likely grow back. The word amputation was mentioned to me for the first time. I sobbed with fear and the realization of certainty that I had no control over this. Low and a couple of beholds later, I was back to square one with this “thing”. In just two short years, I found myself facing the loss of my right leg below the knee. So, in June 2002 the surgery to amputate my leg took place. Living without a leg was a whole new world. I was very depressed, frightened and had to grapple with coming to the acceptance that this was my life now.
How dare NF-1 intrude into my life and mess it up. Soon I was fitted with prosthesis and I was on a path of independence learning to walk on my new leg. It has been nearly 12 years now and functioning with my “leg” is just part of my day to day life.

Fast forward into 2012, it was May and a whole new mess of problems. I had been having more pain in my left hip this time. My walking became painful. CT Scans, MRI’s and more doctor’s appointments then I can recall. This time, once again I was facing a very complicated surgery due to a MPNST in the area of my left iliac & pelvis. I was in for more surgery and a 9 week stay in hospital and rehab. It was a painful time for me, physically and mentally.

I spent several months in a wheelchair, then taking small steps with a walker, then bigger steps and eventually crutches. I underwent 33 radiation treatments that were completed in December 2012. I had hoped that was the end of it..... BUT……….

I am now living with the recurrence of this in both lungs – the metastasis of my MPNST…..so my story continues….

One of the reasons I am here & laying this all on the line, is because it is my sincere hope that something good comes from my experiences with this disorder. If I had have known I had NF, things could be very different for me right now. Maybe I can get people googling to learn a little bit more about NF....because.....Just imagine having a medical condition that many doctors have never heard of: one so diverse and unpredictable, that no one can tell you which symptoms you will have, and when? This is a way of life for those with neurofibromatosis. Often misdiagnosed, or not diagnosed until complications arise, people with this disease also face very limited treatment options....

Neurofibromatosis (NF) is three distinct disorders: NF-1, NF-2 and Schwannomatosis. NF causes tumours to grow on nerves throughout the body. It can lead to blindness, bone abnormalities, deafness, disfigurement, loss of limbs, learning disabilities, and excruciating, disabling pain. Sometimes, it can lead to cancer. NF-1 affects one in every 3000 people, and is more common than Cystic Fibrosis, Duchenne Muscular Dystrophy and Huntington’s disease combined.

THERE IS NO CURE.

Thank you for taking the time to read this post & thank you too for your support. It helps me in so many ways.

xxx

[GoJays]

[GoJays]

[VeeVee]

Sending you happy and healing thoughts Loocie. Thank you for sharing your story.

[McSkier]

[McSkier]

Your strength , courage and selflessness in sharing your story...so brave, so caring........
Loocie we walk with you and beside you and are here for you as you choose and need.....
giving you all we have, with all our love.