James's Story
Birthday: May 12, 1993
Location: Pennsylvania, USA
Diagnosis Date: Jan 2008
Type of Sarcoma: Biphasic Synovial Cell Sarcoma
Tumor Site: Right Arm - Below Elbow
Age at time of Diagnosis: 14 years
Hospital:
Childrens - Pittsburgh
Oncologist:
Dr. Wollman
Surgeon:
Dr. McGough
Diagnosis Experience:
James was complaining for about a year about a bump on the ulner part of his right arm. I
(his mother) just assumed it was a cyst...so I did nothing about it until he begged me to
get it checked. November I took him to our local pediatrician - who assumed the same as I
that it was probably a cyst and sent us to a surgeon to have it looked at. We went to the
surgeon in Nov 07 and had him look at it...he assumed the same as us...probably a pulled
muscle..advised us to watch it for a month and come back to have it re checked. We
did...it had not grown but was still bothering James - after the doctor told us what
we could do...Ultra sound it - or a couple other options - he was unsure if that would
tell us what it was - he asked James and I what we wanted to do. I said if we go through
all of that (testing) we will end up taking it out anyway right - he agreed so James and
I decided to skip all the testing and just have it removed. (Still thinking it was just a
cyst). Jan 3, 2008 - James went in for outpatient surgery. The Doc. came to talk to us
after and told us what it looked like - how big it was and that he had no idea what it
was. He sent the sample to Children’s to have it tested. We scheduled our 2 week check up
with the doctor and went on our merry way. Jan 10th, 2008 - Our two week check up appointment -
two doctors walk in the room and close the door...my heart started beating very fast. The
doctor came right out with...'The test results came back with a rare form of cancer - it
is biphasic synovial sarcoma and sent us to Children’s Hospital. We called his dad from
the doctors office and had the doctor give all the details to him - needless to say. we
were both shocked. James just thought it was cool - he had something rare - didn't care
about it at all. I, on the other hand, had to drive him back to school without breaking
down in front of him. I did pretty well. The surgeon’s office called children’s for me
and set up our meeting with Dr. Wollman. We went to see him the next day - he explained
to us that he wanted to look at the pathology report again and have James set up for CT
of the chest, abdomen, and pelvis and an MRI. It was probably a week before we had those
test done - and another week before the doctors presented the case to the cancer board.
All the tests came back clean - and the decision was to get a clean margin of tissue
around the original site. We set up an appointment with Dr. McGough at Shadyside and he
informed us of what they will be cutting and how he would try to save mobility of the
hand and thumb. Surgery was scheduled for Feb. 28th, 2008. Everything came out fine. He
could move his hand and fingers. Dr. McGough came to talk to us after surgery and told us
he saved the nerves and he should have full movement with no difficulties. THANK YOU DR.
MCGOUGH! We scheduled the 2 week check up with the surgeons office and went on our merry
way. We removed the bandage after 3 days. They did it at James' Dads house...and sent me
pictures because I wanted to know how much tissue they removed from his arm. It was horrible!
It looked like a caterpillar (1'wide and 4' long) was sitting on top of his arm...you
couldn't tell if you were looking at his arm or his elbow. This was the first time James
showed even a little bit of emotions. He told me it was the ugliest thing he ever saw.
March 10th, 2008 - back to Dr. McGough's office for his check up and the lab results from
the resection. Stiches were removed (James was more worried about getting the stitches
removed than the whole darn surgery) but he did it. And did a fine job. Test results came
back - the margins were very close and there was evidence of tumor in the tissue. So the
next step was radiation of the infected area. Dr. McGough and Dr. Wollman were going to
chat about the test results - present his case to the cancer board and determine a course
for us. Tuesday, March 18, 2008 - Dr Wollman wanted to see James and talk about the test
results...but he also wanted us to get another CT of the chest before we went to his office.
We did the CT and went to his office for our appointment. Dr. Wollman does his check up on
James and sits in a chair facing Gene (James dad) and me. James is laying on the bed still.
Dr. Wollman tells us that they went over James' case again with the cancer board - and the
radiologist re checked the first CT and found 3 spots on James' lung - they were missed the
first time. (my heart sank and my eyes started to fill up - and James was looking right at
me. I turned my head to the window and gained control). The spots were still there on the
CT they took that day. They are small - probably a pea size - but he wasn't sure if they
would be able to biopsy them. We would have to wait until Dr. Wollman talked to the
radiologist and they checked to see if they had grown from the first time until now. Two
days went by...nothing, Gene finally sent a message to the doctor and asked what he had
found out. They decided they would not put James through the biopsy - just watch the spots
to see if they grow. (More waiting) If they grow they will know it is definitely the cancer.
James arm heeled nicely. (Although it's not pretty) - he started radiation on March 31st -
and has to go for 6 weeks straight...high powered..5 days a week. Not scheduled for another
CT until May 1st. Keeping our fingers crossed and praying praying praying!!!!!!!!!! Funny
how a little bump can turn into all this.
May 1, 2008:
Our scheduled doctors appointment.
James had his first CT since the dx of the spots on his lungs.
The CT came back with no changes from last month.
April was THE LONGEST MONTH OF MY LIFE. I am so relieved
that there was no change. James is scheduled for his next doc.
appointment on the 29th of May and is scheduled for an MRI of his
right arm and another CT of the chest on the 13th of June.
He has been going to radiation every day for the past 5 weeks (mon-fri)
and should be doing his last treatment on the 15th of May. He is handling it very well.
No side effects yet...his scar is breaking open in some places...but I guess that is
normal for this treatment.
Thank everyone for the prayers and generosity.
I will update this if any changes.
Updates
July 29, 2009:
July 30th was his last scans.
The nodules on his lungs are 3mm and 5mm
The doctors still do not feel the need to have them biophsied (sp?)
After reading his reports over the past year. I noticed that the left lung went from
4mm to 5mm. I am inquiring to get a second opioion from cleveland clinic.
The arm scans were no evidence of desease just some irregular bone marrow from
radiation.
Next scans are scheduled for oct 27th with childrens hospital.
I will update if I get information from cleveland clinic.
March 23, 2009:
James will be getting his next scans on the 24th of March. We will update the site with his test results as soon as we get them.
In the meantime...we have been informed that Make-A-Wish will be honoring James' wish - we will be going to New York on April
2nd so he can meet and greet with Sr. James Paul McCartney. James is very excited!!
I am so excited for him. He has taken this whole situation with a grain of salt and deserves this once in a life time opportunity.
Thanks to the Make-A-Wish team for helping to make this all happen.
January 5, 2009:
James had his last scans done on the 23rd of december. We were very pleased to hear he is NED in
his arm and the nodules on his lungs are without change. He has had a very good year! The only thing
I asked for at christmas was to receive clean scans and to be able to relax and enjoy the holiday
season. January will be one year since all this has occured - we hope and pray that 2009 will be all
clean scans. Can you move him from going through to survivor. Merry Christmas to all and hope that
2009 will be a clean year for all!
September 30, 2008:
James had his scans this week and everything came out the same...the nodules are still there...but
they have not grown and no evidence of disease in his arm. Next scans are Dec..23rd.
June 28, 2008:
We had our first 3-month scan - MRI showed no evidence of disease and the CT showed no changes.
James handled radiation very well. No side effects and (although it took mom to apply the burn
lotion correctly) he healed after about a week when treatment was finished. His arm looked like
what I might cook for dinner at times (burnt hot dogs) but now it is tannish in color and is
healed completely.
Make-A-Wish is coming to talk to him on Tuesday. He wants to have a sweet "16" party and have
nickelback play at it. He is hoping they let him play on stage with them.
He is not scheduled for another CT/MRI until September. We'll just enjoy our summer until then!
Keep praying
:: James at his confirmation with his Sponsor :: |
:: Off to New York to Meet Sir Paul McCartney :: |
Click Here to Return to Faces of Sarcoma Home Page
