Yesterday, Andrew and I (and his parents) traveled to Memorial- Sloan Kettering Hospital in New York City to meet 2 doctors for a second opinion of Andrew's diagnosis and treatment. Dr. Carol Morris, Orthopedic Oncologist and Dr. Lenni Wexler, Peds Oncologist were both very helpful in, again, walking us though the treatment process and Andrew's diagnosis. Since Andrew's case is so rare, there are only about 300 cases per year of Ewing's and far less of those are adults, you can image that everyone wants to have him under their care. Some Sarcoma doctors may go there entire career and never run across an adult case that they get to treat. With that said, we feel comfortable with the decision that Dr. Thornton has made at Johns Hopkins and he will be continuing his treatment under her care.
Andrew will begin his 3 day hospital stay on Monday June 29th in Reston Hospital in Virginia under the daily care of Dr. Felice and the overall care of Dr. Thornton at Johns Hopkins. The option of surgery and/or radiation or a combo of the two, will be discussed and revisited around weeks 9-12 of his treatment. A decision will be made then about how to proceed.
As you can imagine we are all very exhausted and hope to take the weekend to sleep and get ready for the long week ahead. Linda and Pete (my parents) will be coming to stay with us from Sunday to Wednesday of next week and then Andrew's parents, Gwen and Steve, will be with us from Wednesday through the weekend. We are very lucky to have supportive parents, who just happen to be teachers and have the summer off (or in my dad's case have every day as Sunday -- Mr. Retired), who are able to help out.
We really appreciate all of our friends who have also offered to help in any way needed. We promise to take you up on your dinner offers and movie nights once we get this treatment started and can better predict Andrew's schedule.
But for now, I bid you adieu ......
Wednesday, June 24, 2009
Wednesday, June 17, 2009
WE ARE.......
I guess if Andrew has to have cancer, I'm glad that he has Johns Hopkins as a hospital and Dr. Katherine Thornton on his side. Dr. Thornton is young, outgoing and optimistic that with a lot of hard work will be able to beat Andrew's cancer.
Since Dr. Thornton is located in Baltimore and we live in Northern Virginia, she and our oncologist in Reston, Dr. Felice, have decided to work together so that Andrew does not have to travel to Baltimore every time he needs treatment. That is more of a relief than I can ever express especially after making the drive yesterday. I felt like cancer was going to be the easy part of situation -- the driving was going to be the scary part. (HAHA, I'm a bad driver, I know. I learned my driving skills from my mother!!!)
Andrew will begin chemo treatment some time next week (probably Thursday) after he gets an EKG, Chest CT and full spinal MRI. They are the last tests that need to be done so that treatment may begin.
His treatment will be broken up into a few section by both the Chemo treatments itself and the surgery that will interrupt in the middle. In total with the Chemo-Surgery-Chemo regiment, it will take about 49 weeks to complete. If anyone's counting that's about one year from now, or right around Andrew's 30th birthday!!!
The treatment will go as follows:
3 days in the hospital receiving the chemo regiment: vincristine (Oncovin®), dactinomycin (Actinomycin D®), cyclophosphamide (Cytoxan®), and doxorubicin (Adriamycin®).
then 21 days off
then a 5 day regiment (Monday - Friday) of outpatient (about 2-4 hours a day) of : ifosfamide (Ifex®) and etoposide (VePesid®, VP-16)
then 21 days off
and complete the cycle again.
After 4 full chemo cycles or 12 weeks -- Andrew will have surgery to remove the leftover tumor and any infected bone.
No chemo during recovery but soon after he will begin the regiment again
3 days in the hospital
21 days off
5 days outpatient
21 days off
3 days in the hospital
21 days off
and then for the rest of the time
every 21 days he will have the 5 day treatment until complete.
When he is finished and given a clean bill of health, which I know he will, he will only need to have scans 4 times a year for 2 years and then bi-yearly after that until the 5 year mark to make sure he's clear. Dr. Thornton is optimistic that we can beat this cancer and that Andrew and I can live a very normal life -- if you call our life normal!!!
Of course now that I've told you all of the good news, here's the catch: with the extremely high level of chemo Andrew will be receiving, he will be more susceptible to catching diseases that his body would usually be able to fight off. With that said, we appreciate all of the support and offers for visits but we will need to limit them and ask everyone to not be around Andrew or myself if you have come in contact with other people who may even have even just the common cold. We will also be vigilante's with hand washing and sanitizer when you enter any house we are in and are around us.
Andrew and I feel very lucky to have caught this disease in an early stage and are committed to winning the battle. I have recently found myself saying that Andrew is "Surviving Cancer" and not just "beating" it. The more positive the better.
Thank you all for all of your love and support .....
WE ARE ...... SURVIVING CANCER!!!!!!
Since Dr. Thornton is located in Baltimore and we live in Northern Virginia, she and our oncologist in Reston, Dr. Felice, have decided to work together so that Andrew does not have to travel to Baltimore every time he needs treatment. That is more of a relief than I can ever express especially after making the drive yesterday. I felt like cancer was going to be the easy part of situation -- the driving was going to be the scary part. (HAHA, I'm a bad driver, I know. I learned my driving skills from my mother!!!)
Andrew will begin chemo treatment some time next week (probably Thursday) after he gets an EKG, Chest CT and full spinal MRI. They are the last tests that need to be done so that treatment may begin.
His treatment will be broken up into a few section by both the Chemo treatments itself and the surgery that will interrupt in the middle. In total with the Chemo-Surgery-Chemo regiment, it will take about 49 weeks to complete. If anyone's counting that's about one year from now, or right around Andrew's 30th birthday!!!
The treatment will go as follows:
3 days in the hospital receiving the chemo regiment: vincristine (Oncovin®), dactinomycin (Actinomycin D®), cyclophosphamide (Cytoxan®), and doxorubicin (Adriamycin®).
then 21 days off
then a 5 day regiment (Monday - Friday) of outpatient (about 2-4 hours a day) of : ifosfamide (Ifex®) and etoposide (VePesid®, VP-16)
then 21 days off
and complete the cycle again.
After 4 full chemo cycles or 12 weeks -- Andrew will have surgery to remove the leftover tumor and any infected bone.
No chemo during recovery but soon after he will begin the regiment again
3 days in the hospital
21 days off
5 days outpatient
21 days off
3 days in the hospital
21 days off
and then for the rest of the time
every 21 days he will have the 5 day treatment until complete.
When he is finished and given a clean bill of health, which I know he will, he will only need to have scans 4 times a year for 2 years and then bi-yearly after that until the 5 year mark to make sure he's clear. Dr. Thornton is optimistic that we can beat this cancer and that Andrew and I can live a very normal life -- if you call our life normal!!!
Of course now that I've told you all of the good news, here's the catch: with the extremely high level of chemo Andrew will be receiving, he will be more susceptible to catching diseases that his body would usually be able to fight off. With that said, we appreciate all of the support and offers for visits but we will need to limit them and ask everyone to not be around Andrew or myself if you have come in contact with other people who may even have even just the common cold. We will also be vigilante's with hand washing and sanitizer when you enter any house we are in and are around us.
Andrew and I feel very lucky to have caught this disease in an early stage and are committed to winning the battle. I have recently found myself saying that Andrew is "Surviving Cancer" and not just "beating" it. The more positive the better.
Thank you all for all of your love and support .....
WE ARE ...... SURVIVING CANCER!!!!!!
Monday, June 15, 2009
Medi Port Today
So I have to admit, Andrew was a model patient today. He had a single Medi-port inserted under his right collar bone. The port will allow him to more easily receive Chemo when the time is right. The procedure itself only took about an hour. He came trough it with flying colors and even a smile on his face. He is only now experiencing a minor amount of pain and discomfort where the port was inserted. This pain is usual and will subside over the next few days. He will be able to resume regular activity in about 7 days -- you know, installing tile floors, mowing the lawn, moving furniture .. etc. etc.....
Tomorrow is the big day. The day we go to Johns Hopkins to talk to Dr. Thornton about Andrew's treatment options and when he will begin the regiment.
Cross your fingers and send good thoughts our way.
(picture is of Andrew before procedure)
Good-nite and Good Luck...........
Sunday, June 14, 2009
Many Thank you's
Andrew and I are completely overwhelmed with the love and support we (and our families) have received over the past few days. We are also very grateful for all of the prayers that were said today in all of the Uniontown, PA churches in honor of Andrew. We know that all of you stand strong behind us as we go through this difficult time in our lives.
Tomorrow Andrew will be having the Cath-port inserted into his chest so that he is ready for treatment when it begins. Wish us luck because all of you who know Andrew are well aware that he is a terrible and dare I say, demanding patient. A day in the hospital with Andrew can seem more like a root canal without Novocaine. (Humor really is the best medicine.)
But in all seriousness, keep all of the love and support coming.
All our love,
Amy and Andrew (and Winston)
Tomorrow Andrew will be having the Cath-port inserted into his chest so that he is ready for treatment when it begins. Wish us luck because all of you who know Andrew are well aware that he is a terrible and dare I say, demanding patient. A day in the hospital with Andrew can seem more like a root canal without Novocaine. (Humor really is the best medicine.)
But in all seriousness, keep all of the love and support coming.
All our love,
Amy and Andrew (and Winston)
Friday, June 12, 2009
June 13, 2009
(The news that I am about to post will come as a shock to most of you who we have not had the opportunity to call personally.)
Hi Everyone. Andrew and I have decided to start this blog for our friends and family to track Andrew's progress with his treatments. On June 11, 2009, Andrew was diagnosed with Ewing's Sarcoma / Peripheral Primitive Neuroectodermal Tumours (PNET). For those of you who don't know what Ewing's/PNET is, please allow me to explain:
Ewing's sarcoma / Peripheral Primitive Neuroectodermal Tumours (PNET) of bone is a type of cancer usually found in children and young adults. The peak incidence is between ages 10 and 20, it is less common in children under 5 or in adults over 30. Ewing's s can occur in any bone in the body; the most common sites are the pelvis, thigh, lower leg, upper arm, and rib. The tumor is composed of small round blue cells. Ewing's sarcoma can also arise in soft tissue (extra-skeletal).
There are different stages of PNET/Ewing's. Andrew's cancer is localized in his hip.
So I am guessing that most of you are asking yourself the same question -- How did this happen? Some of you may remember back to October 2008, Andrew began to complain about a dull pain in his left hip. After returning from his firm's annual golf trip with the pain still continuing, he went to see an Orthopedic surgeon to discuss his situation. But by the time of the appointment, the symptoms had subsided and he was feeling better. This went on and on with several more visits to the doctor until about the April time frame. In April, after the doctor had exhausted all of his options of what it may be, he recommended that Andrew see a specialists who dealt with nerves. The nerve doctor prescribed a special pelvic MRI for Andrew so that she could see all of the nerves in his back/hip region. After review of the MRI by both of his doctors, we were recommended to Dr. Felice, our Oncologist, for an appointment the following day.
Dr. Felice and his staff wasted no time scheduling bone scans, more x-rays and other tests for Andrew the same day. By this time it was mid-May. It was determined that Andrew had some abnormalities and pockets of fluid in his hip. After seeing a special Orthopedic Oncologist who confirmed the abnormalities, a biopsy was scheduled for June 3. The biopsy was done at Reston Hospital and sent to Johns Hopkins University Hospital for the final diagnosis. On June 11, 2009, Dr. Felice met with Andrew, his parents and I to discuss the finding of the Small Blue Cell Tumors that are in Andrew's hip and the course of treatment from here.
Andrew will be having a Cath-port installed in his chest wall on Monday June 15, where the Chemo will be administered. On Tuesday June 16, we will all be traveling to Johns Hopkins to meet with Dr. Thornton, a Sarcoma Specialist, to discuss the treatment options for Andrew.
Andrew and I are well aware that this news may come as a complete shock to most of you -- as it has to us and our families. We are also well aware that some of you may not know what to say to us or how to help. Please know that it is ok not to know what to say.
We hope that with this site we can let you know Andrew's progress, post recent pictures and receive notes for Andrew to read. It is important to keep our spirits high during this time and remain positive and open to all treatment options available to us. We appreciate any and all support and encouragment.
Until next time ......
Hi Everyone. Andrew and I have decided to start this blog for our friends and family to track Andrew's progress with his treatments. On June 11, 2009, Andrew was diagnosed with Ewing's Sarcoma / Peripheral Primitive Neuroectodermal Tumours (PNET). For those of you who don't know what Ewing's/PNET is, please allow me to explain:
Ewing's sarcoma / Peripheral Primitive Neuroectodermal Tumours (PNET) of bone is a type of cancer usually found in children and young adults. The peak incidence is between ages 10 and 20, it is less common in children under 5 or in adults over 30. Ewing's s can occur in any bone in the body; the most common sites are the pelvis, thigh, lower leg, upper arm, and rib. The tumor is composed of small round blue cells. Ewing's sarcoma can also arise in soft tissue (extra-skeletal).
There are different stages of PNET/Ewing's. Andrew's cancer is localized in his hip.
So I am guessing that most of you are asking yourself the same question -- How did this happen? Some of you may remember back to October 2008, Andrew began to complain about a dull pain in his left hip. After returning from his firm's annual golf trip with the pain still continuing, he went to see an Orthopedic surgeon to discuss his situation. But by the time of the appointment, the symptoms had subsided and he was feeling better. This went on and on with several more visits to the doctor until about the April time frame. In April, after the doctor had exhausted all of his options of what it may be, he recommended that Andrew see a specialists who dealt with nerves. The nerve doctor prescribed a special pelvic MRI for Andrew so that she could see all of the nerves in his back/hip region. After review of the MRI by both of his doctors, we were recommended to Dr. Felice, our Oncologist, for an appointment the following day.
Dr. Felice and his staff wasted no time scheduling bone scans, more x-rays and other tests for Andrew the same day. By this time it was mid-May. It was determined that Andrew had some abnormalities and pockets of fluid in his hip. After seeing a special Orthopedic Oncologist who confirmed the abnormalities, a biopsy was scheduled for June 3. The biopsy was done at Reston Hospital and sent to Johns Hopkins University Hospital for the final diagnosis. On June 11, 2009, Dr. Felice met with Andrew, his parents and I to discuss the finding of the Small Blue Cell Tumors that are in Andrew's hip and the course of treatment from here.
Andrew will be having a Cath-port installed in his chest wall on Monday June 15, where the Chemo will be administered. On Tuesday June 16, we will all be traveling to Johns Hopkins to meet with Dr. Thornton, a Sarcoma Specialist, to discuss the treatment options for Andrew.
Andrew and I are well aware that this news may come as a complete shock to most of you -- as it has to us and our families. We are also well aware that some of you may not know what to say to us or how to help. Please know that it is ok not to know what to say.
We hope that with this site we can let you know Andrew's progress, post recent pictures and receive notes for Andrew to read. It is important to keep our spirits high during this time and remain positive and open to all treatment options available to us. We appreciate any and all support and encouragment.
Until next time ......
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