My Treatment History to Date:
Monday, 12/8/2008 I spent all day meeting with my doctors at CHOP
Tuesday 12/9/2008 I had a 4 hour surgery, which included a surgical biopsy of my tumor
Wednesday 12/10/2008 Tests and scans
Thursday 12/11/08 Tests and scans and official diagnosis of Ewing's Sarcoma
Friday 12/12/2008 Began first treatment of Chemotherapy
Sunday 12/14/2008 Finished the chemotherapy treatment
Monday 12/15/2008 Discharged and went HOME!
Thursday 12/18/2008 Went to CHOP to check my broviac lines
Saturday 12/20/2008 Went to local ER with a fever, and transported to CHOP in a SNOWSTORM!
Tuesday 12/23/2008 Discharged from CHOP-- Home for Christmas
Monday 12/29/2008 5 day in-patient chemo treatment
Saturday 1/3/2009 Discharged from CHOP and went home
Monday 1/5/2009 Clinic visit and blood transfusion
Tuesday 1/13/2009 2 day in-patient chemo treatment
Thursday 1/15/2009 Discharged and went home in time for mom's birthday dinner.
Thursday 1/22/2009 CHOP for CBC
Friday 1/23/2009 Local ER for evaluating chemo side effects
Monday 1/26/2009 Clinic and 5 day chemo
Friday 1/30/09 Finished chemo and discharged
Wednesday 2/4/09 Clinic and blood transfusion
Monday 2/9/09 Clinic, and 2 day chemo
Wednesday 2/11/09 finished chemo and discharged
Tuesday 2/17 Clinic, CT and Pet scans
Wednesday 2/18/09 X-ray, MRI, and Bone Scans
Monday 2/23/09 Clinic and next scheduled 5 day chemo
Friday 2/27?09 Blood transfusion, finished chemo Round 6 and discharged
Monday 3/2/09 Meeting surgical teams at CHOP to find out the plan
Monday 3/9/09 Report to CHOP for typing
Tuesday 3/10/09 Surgery
During my surgery my surgeon cut just above the growth plate of my ilium (the big wingy bone) below that is
my pubic bone. Then he cut where my ilium meets my spine and my "butt bone" and took out the entire ilium
and 20% of the muscles. From there he attached a piece of tape from the top of my femur to a bone below it to
stop my leg from drifting up as much as it would 'cause with no hip bone my leg would go into my intestines (not
good!). Then when I am about 14 they will go back in and stop the growth of my left leg so that both legs will
be an even length. Two days after my surgery I was put in a cast going from my right ankle to the middle of
my stomach. I will be in that for 6-8 weeks. The pathology report came back with 100% clean margins which
means I will not need radiation.
Wednesday 3/18/09 Discharge
Monday 3/22/09 Clinic and 2 day chemo
Wednesday 3/24/09 Finished chemo, transfusion, and discharged
I am half-way through chemo!!
Monday 3/30/09 CBC at local hospital
4/4/09 MY BIRTHDAY!
Monday 4/6/09 Post surgical check-up with Orthopaedics, Clinic, and 5 day chemo
Friday 4/10/09 Finished chemo and discharged, home for Easter!
Wednesday 4/15/09 CBC at local hospital
Thursday 4/16/09 Went to CHOP in the middle of the night with fever, but the fever was gone by the time we got there at
2:30 am., so we just hung out at CHOP until my 8:00am appointment for a transfusion. Transfusion and went home that
Friday 4/17/09 Went to CHOP in the middle of the night with fever again, this time admitted in ER.
Friday 4/17/09 Got my cast off and brace on
Saturday 4/18/09 Discharged and home late afternoon.
Monday 4/20/09 Clinic and didn't make counts, so chemo delayed, sent home. Trying again tomorrow.
Friday 4/24/09 Clinic and 2 day chemo
Sunday 4/26/09 Finished chemo and discharged
Sunday 5/3/09 Local ER with fever, neutropenia, received antibiotics and transfusion then transported to CHOP
Tuesday 5/5/09 Discharged and went home.
Thursday 5/7/09 Clinic and didn't make counts, so chemo delayed, sent home. Trying again on Monday.
Monday 5/10/09 Clinic and 5 day chemo
Friday 5/15/09 Finished chemo, but not discharged. Staying for in-patient Physical Therapy.
Saturday 5/23/09 Discharged from Seashore House and went home.
Tuesday 5/26/09 Clinic and Chemo
Monday 6/1/09 Clinic and transfusion
Monday 6/8/09 Clinic and 5 day chemo
Friday 6/12/09 Finished chemo and discharged
Thursday 6/18/09 CHOP for x-ray, ortho clinic, oncology clinic, transfusion and platelets.
Thursday 6/18/09 I TOOK THE BRACE OFF!!
Monday 6/22/09 Scheduled chemo... didn't make counts. Trying for Thursday.
Thursday 6/25/09 Chemo and discharged
Thursday 7/2/09 CHOP for transfusion
Thursday 7/9/09 Clinic and 5 day Chemo
Monday 7/13/09 Ortho clinic, finished chemo and discharged
Monday 7/20/09 Clinic
Monday 7/27/09 scans and tests
Monday 8/3/09 Pet scan, Oncology, and Orthopaedics appointments to see if I made it to remission. Maybe a transfusion too.
There were two areas of concern showing up on my scans, so my doctors said to go on vacation and come back in three weeks
for another scan to see if it changes.
Saturday 8/8/09 Left for Seattle
Saturday 8/22/09 broke my femur in a restaurant in Seattle, ambulance, ER, and admitted to Seattle Children's Hospital
Sunday 8/23/09 Casting-- I now have ANOTHER spica cast.
Monday 8/24/09 Discharge from Seattle Children's Hospital to catch my flight home to NJ.
Tuesday 8/25/09 CHOP Orthopaedics for exam and x-rays
Thursday 8/27/09 CHOP Nuclear Medicine for PET/CT to try again to see if I am in remission.
Friday 8/28/09 CHOP Oncology meeting to review scans. The scans were inconclusive again, so next scan in two months.
Tuesday 9/8/09 CHOP Orthopaedics, x-rays, CT scan
Monday 9/28/09 CHOP Orthopaedics for x-rays, clinic and cast removal, Oncology Day Hospital for broviac removal.
Monday 10/26/09 CHOP scan & clinic day: Ortho x-rays & Clinic, Oncology Clinic, x-rays, PET, CBC & CT
Next clinic and scan day isn't until January, but before then I will be down to CHOP for Youth Advisory Council Meetings every
month and some Ortho clinics for my hip and femur.
Tuesday 1/26/10 CHOP Surgery on my toe. Dr. D had to move the nail bed. You can loose your nails from chemo, and I think
the new toenail that was trying to come in went down instead of up. I got badly infected in December and again in January.
Should be fine now after the surgery heals. I go back for check-up on it in two weeks.
Friday 2/5/10 CHOP Onco 6 Month post treatment scan & test day with clinic. Results: scans unchanged
Thursday 2/11/10 CHOP Ortho Post-Op check up on my foot with Dr. Dormans and the stitches will come out.
Friday 4/30/10 CHOP Onco 9 month post treatment scan & test day with clinic. Results: scans unchanged
Monday 6/30/10 CHOP Ortho Clinic
Monday 7/19/10 CHOP Onco 1 year post treatment scan/clinic day. Results: scans unchanged
Tuesday 8/24/10 CHOP - Dexosan for bone density evaluation.
Monday 10/25/10 CHOP Onco 15 month post treatment scan/clinic day. Results: scans changed
Thursday 11/4/10 CHOP Ortho Clinic to meet with Dr. Dormans about scan results.
Monday 1/24/11 CHOP Ortho Clinic with Dr. D for check-up on my hip and femur
Monday 2/7/11 CHOP Onco 18 month post-treatment scan and clinic day.
I still have PT every week, and think that I will be going for a realy, realy loooong time.