Tracie – Tumour
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This is Tracei.
She is a respiratory therapist in a trauma hospital in Virginia. Her ma and pa broke up when she was a baby and a few years later, her mum remarried a pastor. She lost contact with her dad because their family kept moving around the country from parish to parish.

How did you become homeless?
My step-dad who was a lovely man, was a travelling pastor and somehow got into crack, then got my mum into crack. Soon afterwards my family of seven, my parents and four siblings lost contact with church. We went from living a faily normal life to wondering at times when our next meal would come. Over the next ten years we continued moving from state to state, living in abandoned homes and going from shelter to shelter, 18 total.

Was it scary?
I remember one time when my step dad’s dad had to kick us out, we walked about two hours on foot to a shelter in downtown Philadelphia, we must’ve either arrived too late to be admitted or there wasn’t enough room. We ended up sleeping right next a dumpster beside the shelter with rats. I was afraid then, that sure made one long night. One other time was when my mum and siblings were staying at an anonymous women’s shelter in Virginia, we’d been only there for a week when my mum’s addiction overrided her will to make curfew. I was so afraid of missing it because we’d get kicked out so I begged and pleaded with her to leave so we could make it back in time.

How did you get your life together?
Social services took us and all five of us were taken in by a new church. I get goosebumps thinking about how generous people can be. I was able to live a normal life and be a child again, which was challenging at first. I also met the love of my life – my now husband Wesley – who is God fearing and  one of the sweetest, honest, hard-working man I know. He was my first junior prom date and the first guy I could talk to on the phone when I turned 16.

 

I finished high school and went on to get two degrees. My biological father and I were reunited when I turned 18. Initially I was angry with him because I didn’t understand why he didn’t find me, but I now know that my parents saw to it that we were untraceable due to us relocating so many times.

My dad has been such a vital part of my life since we reunited. He’s held me together after losing the desire to want to live after the unthinkable happened, we lost our first baby to stillbirth. We now have a beautiful 18 month old ‘rainbow baby’ boy who’s officially an international traveller. My dad is the reason we’re here now, and making sure I have nothing to worry about. He has four children, me included and we all think the world of him. He’s such an awesome dad.

 

One good thing that came from my horrible childhood was the fact that God enabled me to remain determined to turn catastrophe into triumph. I remember we were living in a hotel and most of the time only had coffee and sugar as dinner because it was free in the main lobby. About nine years later, I joined a club in high school where I was able to be part of a team that helped to children in need. I remember driving up to the church and crying my eyes out in the parking lot once I realise this was the very same church that kept my family from being hungry during the holidays. It was such a cathartic moment.

 

One other time was when I took a weekend to volunteer at the local union mission by organizing the food pantry. 15 years prior, the union mission took my dad, 4 siblings and I in for a short period of time (my mum was in jail at the time). The union mission only housed men, but they made an exception for us. I often get overjoyed at the thought of giving back (tears are rolling from my face even now). I decided that day to make volunteering with my husband and child (dren) a tradition.

 

Wow man I would probs not speak to my parents again if that were me.

I totally forgive my parents and remain in contact with them. As I look back over my life, I can honestly say that God had His hands on me and I wouldn’t be in the healthly frame of mine I’m now if it weren’t for Him.

 

How did you find out about the tumour in your leg?
I noticed an achy pain in my butt 10 yrs ago, but ignored it. Three years after that I got it checked and was diagnosed as having Desmoid tumour which are rare and benign but grow aggressively into soft tissue and nerves affecting around 4 million people a year. Some grow into the abdomen, others grow into the extremities. Mine is in my left hip.  It got to the stage it was hurting so badly that I couldn’t sit down or cross my legs. I just wanted it gone, so chose to operate. They took it out (10cm) along with some butt muscle. I went through 4 months of bedrest and 1 year of physical therapy.

Then you thought you were fine after that?
With the exception of the alignment issues post-surgery, I thought it was all over with. I had to skip a couple of routine MRI’s because but my insurance wouldn’t cover it. Then I got pregnant so couldn’t get the next check. I lost my baby a few days before she was due, on Valentine’s Day. When I finally got the MRI we saw that the tumour had come back.

I changed my diet which seemed to keep it at bay but I got pregnant again and after I had Wesley Jr, it grew like crazy. I look like I had a third butt. It was huge and irritating and kept growing until it was 1mm away from my sciatic nerve – I would’ve had to get my leg amputated.

Did you get it removed?
Not this time because surgery increases the chances of recurrence by 50-60%, radiation could cause a cancer, chemo has not been known to be all that successful, and anti-inflammatory drugs only has a 20% chance of stopping the growth yet alone shrinking it.  We wanted to make a well-informed decision this time. We travelled everywhere from NYC, to San Francisco. We even packed up our 6 week old baby and drove to Philadelphia to attend the annual Desmoid Tumor Research Foundation meeting where we learned of a non-invasive procedure called HIFU, which heats and destroy the tumour without destroying surrounding tissue. My insurance denied HIFU because it was considered investigational.

So why did you come to Melbourne?
There’re only three doctors in the world who can treat this rare tumour with HIFU and Dr. Andrew Dobrotwir is one, who happens to live in Melbourne. Which by the way is a beautiful place. He was able to destroy 90% of my tumour which is by far the most he’s ever gotten from a tumour my size, this was ground breaking. What’s best is I had a 95% chance of getting a skin burn and I didn’t get any burns at all.

The procedure took a few hours and l felt like a burn for about 10 of the 20 seconds during each sonification/burn. Afterwards they scanned it and Dr D came running out jumping up and down because he so excited – we got 90% of it. They may be writing a medical journal about me because the tumour was so big and the procedure was so successful.

Dr. Dobrotwir suspects the remaining 10% of the tumour to shrink overtime.

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