In the summer of 2010, our 5 year old daughter was diagnosed with Plexiform Fibrohistiocytic Tumor (PFHT). This very rare tumor belongs to the family of Soft Tissue Sarcomas. You can read more about PFHT on this link http://www.thedoctorsdoctor.com/diseases/plexiform_fibrohistiocytic_tumor.htm. It is a malignant, slow growing tumor that most often grows in the soft tissue of extremities in children/young adults. It is rare to metastasize, but commonly recurs.
I noticed a relatively large lump on the underneath of Lauren's upper arm (approx 1 cm). It was bluish/blackish in color and very odd looking. This was on the weekend and I took her to our family doctor the following Monday. Our doctor's response was the same as mine "what an odd looking little bump" and the following day we went for an ultrasound.
We were shuffled around and pushed aside for weeks, waiting to find a general surgeon who would perform a simple biopsy on our 5 year old. No such luck. This was in July 2010, and finally after numerous, tiresome phone calls, we got an appointment at a children's hospital for a mere consultation in December of 2010!! My heart sank and I couldn't understand how our healthcare system could make a child wait for so long for something that could potentially be very serious. We called our personal friend who is a General Surgeon and thankfully he performed the biopsy on Lauren within a few days of calling him.
Lauren had her first surgery in August 2010 for the biopsy. She was put under for this surgery and was an unbelievable little trooper. The first week after surgery passed and we got a call that the Pathology results came back inconclusive. The tissue sample was sent elsewhere to try to get a conclusive result. I knew from this moment that this was not a simple fatty cyst like we had hoped. Even before this moment, I knew this was something more serious. Call it mother's intuition...
Another week or so passed and we got another call. Lauren has Plexiform Fibrohistiocytic Tumor or PFHT. I was told not to worry, and that she would be in great hands, and that she would have an expert surgeon, and this surgeon is one of the best at Sick Kids...and that it was malignant. Once I heard that last word everything else was a blur. Our lives would change forever from this moment on. How could this be? How could our child have this? What exactly does this mean? I've been down this road before with my parents...who are obviously much older...and I know what it meant for them, but for our 5 year old?
After I got off the phone with our surgeon and friend, I called my husband, then I called my sister, then I called my parents, then I called my mother-in-law...and so on and so on. I'm sure you can guess there were many tears, sleepless nights and fear beyond belief until I knew and understood more what this rare, malignant tumor meant for our daughter. I read and read and found others in the world who's children have this very same tumor - 3 other families world-wide to be exact. I'm sure there are others, but these were the only ones I could find online. We formed our own little support group and their help has helped me beyond describable words. They gave me an abundance of advice from first-hand experience which was invaluable. They helped me formulate the right questions for our surgeon, and urged me not to allow mistakes to be made with this tricky sarcoma. Some of them wished they had the knowledge I have today, much of it through their help and experience. I pray for these children everyday who's battle may or may not be more difficult than Lauren's. Their parents are heroes, as are these beautiful children.
In October 2010, Lauren had her second surgery at Sick Kids to remove the tumor completely with the goal of clear margins. "Clear margins" means to remove enough tissue so the edges surrounding the tumor no longer contain tumor cells. The tissue removed was approximately 2 cm L x 1.8 cm W by 2 cm D. Lauren had two rows of internal stitches and I was impressed with her quick recovery and very few complaints.
Two weeks later we got the call from our Surgeon that the surgery was successful. They were able to achieve clear margins and the Pathology report confirmed this. Breathe.
Our story doesn't end here. Lauren will be closely monitored over the next 5 years. She is a healthy, active and very happy little girl and we will do everything in our power to keep her that way.
My intent for this website is to bring awareness of sarcomas, to tell our story, and to hopefully help others through our experience. I found my PFHT "family" through one mother's blog, and I hope others can find us easier and learn from our stories if I do the same. I have learned some very important lessons throughout this experience and I am trying to live each moment of everyday with an absence of fear and an abundance of happiness; love in my heart, intentions of gold, and faith beyond borders.
I noticed a relatively large lump on the underneath of Lauren's upper arm (approx 1 cm). It was bluish/blackish in color and very odd looking. This was on the weekend and I took her to our family doctor the following Monday. Our doctor's response was the same as mine "what an odd looking little bump" and the following day we went for an ultrasound.
We were shuffled around and pushed aside for weeks, waiting to find a general surgeon who would perform a simple biopsy on our 5 year old. No such luck. This was in July 2010, and finally after numerous, tiresome phone calls, we got an appointment at a children's hospital for a mere consultation in December of 2010!! My heart sank and I couldn't understand how our healthcare system could make a child wait for so long for something that could potentially be very serious. We called our personal friend who is a General Surgeon and thankfully he performed the biopsy on Lauren within a few days of calling him.
Lauren had her first surgery in August 2010 for the biopsy. She was put under for this surgery and was an unbelievable little trooper. The first week after surgery passed and we got a call that the Pathology results came back inconclusive. The tissue sample was sent elsewhere to try to get a conclusive result. I knew from this moment that this was not a simple fatty cyst like we had hoped. Even before this moment, I knew this was something more serious. Call it mother's intuition...
Another week or so passed and we got another call. Lauren has Plexiform Fibrohistiocytic Tumor or PFHT. I was told not to worry, and that she would be in great hands, and that she would have an expert surgeon, and this surgeon is one of the best at Sick Kids...and that it was malignant. Once I heard that last word everything else was a blur. Our lives would change forever from this moment on. How could this be? How could our child have this? What exactly does this mean? I've been down this road before with my parents...who are obviously much older...and I know what it meant for them, but for our 5 year old?
After I got off the phone with our surgeon and friend, I called my husband, then I called my sister, then I called my parents, then I called my mother-in-law...and so on and so on. I'm sure you can guess there were many tears, sleepless nights and fear beyond belief until I knew and understood more what this rare, malignant tumor meant for our daughter. I read and read and found others in the world who's children have this very same tumor - 3 other families world-wide to be exact. I'm sure there are others, but these were the only ones I could find online. We formed our own little support group and their help has helped me beyond describable words. They gave me an abundance of advice from first-hand experience which was invaluable. They helped me formulate the right questions for our surgeon, and urged me not to allow mistakes to be made with this tricky sarcoma. Some of them wished they had the knowledge I have today, much of it through their help and experience. I pray for these children everyday who's battle may or may not be more difficult than Lauren's. Their parents are heroes, as are these beautiful children.
In October 2010, Lauren had her second surgery at Sick Kids to remove the tumor completely with the goal of clear margins. "Clear margins" means to remove enough tissue so the edges surrounding the tumor no longer contain tumor cells. The tissue removed was approximately 2 cm L x 1.8 cm W by 2 cm D. Lauren had two rows of internal stitches and I was impressed with her quick recovery and very few complaints.
Two weeks later we got the call from our Surgeon that the surgery was successful. They were able to achieve clear margins and the Pathology report confirmed this. Breathe.
Our story doesn't end here. Lauren will be closely monitored over the next 5 years. She is a healthy, active and very happy little girl and we will do everything in our power to keep her that way.
My intent for this website is to bring awareness of sarcomas, to tell our story, and to hopefully help others through our experience. I found my PFHT "family" through one mother's blog, and I hope others can find us easier and learn from our stories if I do the same. I have learned some very important lessons throughout this experience and I am trying to live each moment of everyday with an absence of fear and an abundance of happiness; love in my heart, intentions of gold, and faith beyond borders.