I wanted to let everyone know that Ryan had a CT scan of the head and chest, chest xray and a
bone scan. We were doing scans to see if the chemo we are on now is working and if we needed to
change our plan of treatment. We got great news yesterday. All of Ryan's scans were clear. We
had microscopic disease after surgery and we still may have that but on the scans we saw no visible
tumors. Our new plan is to do 3 more months of chemo (Gemzar and Taxol) and possibly some
radiation and then if the next set of scans show nothing we will be done. NO MORE CHEMO!!!! I
am so excited. It will be around mid March before we are completely finished but things are looking
good.Ryan is so excited. All he has talked about is going to High School next year and of course
playing basketball. The look on his face yesterday when we got the news was just priceless.
Prayers are working.
September 26 2004
Ryan completed his first full round of chemo on Wednesday. He is having a rough time. It has
made him really sick. He has been very nauseated and having a lot of pain in his legs. He goes
back to the doctor on Tuesday to check counts. The chemo finally hit him on Friday and he has
been sick ever since. He told me though that I am not to tell Dr. Palmer because the sicker the
chemo makes him the better it works. I know Dr. Palmer will get a kick out of this.
September 16 2004
Ryan completed his first round of chemo yesterday. He did very well. So far so good. He is
healing very well from surgery and is anxious to play basketball. He was a little nauseated but did
well and slept through the 5 hour chemo.
September 10 2004
We got the pathology reports back and they were not good. Some of the margins are showing
active disease. Several of the tumors removed on the diaphragm showed disease as well. In
Ryan's lung where we thought there would be nothing the biopsies showed microscopic disease. All
large visible tumors are gone but we still have microscopic disease. We saw Dr. Palmer and will be
beginning a new chemo regimen on Wednesday the 15th. Ryan took it better than I expected. He
doesn't like doing nothing and we have been off chemo for a few weeks and he is anxious to "do
something"!
September 01 2004
Ryan had surgery on the 24th of August. The plan was to remove the chest wall tumor and do
some exploratory surgery and remove anything else we found. The surgery took about 5 hours
and he did very well. He came out of surgery off the ventilator and we just got home from the
hospital yesterday afternoon. During the surgery they removed a piece of 2 different ribs on his
back as well as the tumor. Then they looked at his lung where we had 2 tumors and found nothing
but they biopsied these areas anyway. When they first went in there was a lot of scarring and they
had to remove a golf ball size piece of lung just to get into the chest wall because the lung was
stuck to his rib cage. They then looked at the diaphragm where we had tumors also but nothing
was showing up on the scans. This was the shock. There were several tumors and they ended up
removing 2/3 of his diaphragm. They sent everything to pathology to have it looked at and we got
the results yesterday. Several of the tumors they took are still showing microscopic disease
including the lung. One of the rib bones was involved also. I don't yet know the whole deal
because we don't meet with the Oncologist until Friday. We will be starting a new chemo regimn
possibly next week. All of the large visible tumors are gone but we still have disease to deal with. I
will update again this weekend.
Machelle
July 28 2004
We got the results from last weeks scans and there is still a tumor remaining. Now we have
something new. A golfball size hematoma has appeared which Dr. Palmer believes came from our
last biopsy. We discussed having surgery and met with Dr. Patel who will be our surgeon on
Monday 26th. The surgery is very high risk since Ryan has a lung disease. We discussed
everything and Ryan has decided he wants to go ahead with the surgery no matter what the
outcome may be. He is ready for this to be over with. They plan to go in and ressect the entire
tumor which is on Ryans chest wall on his back and this will include removing anywhere from 2 to 6
ribs. Dr. Patel will also explore the other sites where he had tumors to make sure they are gone.
He will also remove anything suspicious that he may find. We have tentatively scheduled the
surgery for August 18. The surgery will be anywhere from 4 to 8 hours long. It will be a very nerve
wracking day for us.
June 2004:
Ryan is doing well. We had new scans and a biopsy. Everything is looking better every scan. Dr.
Palmer has decided since we still have a few microscopic cells, we are going to do 3 more months
of chemo which will take us to August which is our 1 year mark, We will continue the same chemo
and then re-evaluate in August and possibly do surgery and some radiation. He has grown 3 cm in
the past couple months and is so excited about this. His weight is basically the same even though
we stopped the Megace. He is really excited that this is almost over.
April 2004:
Ryan has done a few rounds of his new chemo now. There were not many side effects. His counts
stay up and Dr. Palmer has allowed him to go back to school for a couple of hours a day 2-3 days
per week. He still has his hair and is now assistant coach for the basketball team he would have
played on. He feels great most of the time. He does get tired and has stomach aches and
headaches at times. His life is more normal now. He got his report card and had all A's. We had a
CT and there were no major changes but there had been a large sac of fluid around the tumor on
his chest wall and the fluid has decreased which is a good sign we are making some progress. Dr.
Palmer said we will discuss surgery again down the road. On May 4 and 6 we are going to have
another CT scan, Chest xray, echo and EKG. This month Dr. Palmer increased Ryan's dose of
Temodar to see how he would tolerate it and so far so good. His counts dropped just a little but not
much. We will discuss increasing it again after this round and also get another biopsy some time
next month or early June.
March 2004:
We decided on a new regimen of chemo. Dr. Palmer doesn't want to even attempt surgery at this
point. The new chemo is Irinotecan and Temodar. He will take the Temodar at home for 5 days
every 28 days. The Irinotecan will be given in the clinic. We will go to the clinic for 2 hours a day
every day for 2 weeks with a week off. The side effects are mild. Diarrhea being the worst. We will
do a couple rounds and get another CT scan to check the progress.
February 2004:
We got the results of all of the tests Ryan had and things are good. His pulmonary test showed that
his lung disease has probably stopped progressing. This means that it is as bad at it will ever get.
His lung functions normally but is smaller and there is some restriction but it works like it should.
Also the Echo showed that there was some improvement from the last test. We also had a PET
Scan which showed some chemotherapy changes but no tumors. We are going to do a biopsy
soon to see if we still have disease. Ryan is doing good. He is worried because we have not been
doing any chemo while doing the reevaluation. His hair is coming back also.
January 31, 2004
We went to see Dr. Palmer about some of the scan results and the PET scan we had
looked really good. There was some stuff that showed around his neck that could mean
something is going on in his lymp nodes but both doctors said it could have been because
he had played basketball the day before the scan. Sometimes this will cause things to
show up as "hot" on the scan. We had a CT on Friday just to be safe. Now our plan is to
get the remaining results on his kidneys, the CT on Friday and probably do biopsies next
week. We are also waiting on the recommendation from the Pulmonary doctors in Denver
as to whether we can go ahead with surgery or not. The echo we had last week was better
than the one in December also and the EKG was normal. He is doing well. I think he
picked up a little stomach virus this week. He wasn't feeling good this morning. But other
than this he is doing well. He is ready for the Super Bowl tomorrow. He helped me put an
entertainment center together today and laughed at me all day.
January 28, 2004
Ryan went to Denver to the Children's Hospital on Monday. They did a Pulmonary Function
test. He saw Dr. Kerby who is a Pulmonologist. She said that Ryan's lung disease has
probably gotten as bad as it ever will be. His lung, even though it is diseased is working
well. We are sending her all of Ryan's scans so she can review them with her colleagues
and give us a recommendation on surgery. We also had the PET scan yesterday. It went
well and hopefully we will have the results on Friday. All we have left now, is the 24 hr
Creatinine test for his kidneys and possible biopsies. Once everything is done we will talk
about our new plan. Ryan is doing great. He is playing basketball every day and he feels
great.
January 23 2004
Today we saw the Radiation Oncologist. Next week we plan to do a PET Scan which will
show us if there is live tumor remaining. We hope to have this on Wednesday. Then shortly
after this we are going to do multiple biopsies to the tumors. Once these are complete and
we have the results we may be able to do surgery and/or radiation. Our news today was
that we can do some radiation but the timing needs to be just right. We will have a busy
week but hopefully lots of good results.
January 21 2004
We are in the process of getting Pulmonary tests, echo, EKG and a consult from the
Radiation Oncologist on what Ryan's status is at this time. We just found out that Ryan is
not a surgery candidate at this point because it is too risky. Dr. Palmer is in the process of
revising Ryan's chemo regimen. We will also be doing multiple biopsies at some point. It
seems that everything is on hold at least for another week until we have results from the
testing.
Machelle
