Michael and I went to his doctor’s appointment on Friday. His counts are ok; his white count is at 2.4K. While we were at his appointment, we did not get to see his PA this time. I think this is the first time we’ve missed her. We asked Michael’s nurse where she was. She was over at the Jackson building admitting another patient and that she was going to be sad that she missed Michael because she tells everyone that Michael is her baby. He is like that, has all the women calling him their baby…
After having a good discussion with his oncologist, our next step now will be more chemotherapy. These rounds will also be inpatient. The doctor did say there are a few other options but due to the amount of travel time we would have going back and forth, he would feel better with impatient chemotherapy. These rounds will only have 2 chemotherapy medications instead of 3. He will still get the ifosfamide, but will now begin receiving etoposide. He will continue with all of the preventative meds as well. His oncologist wants to start pretty soon. He said he will do all the “staging” the first day he admits him and then begin the chemo that evening. This will allow us to have all the scans.
He told us to go home and work out a schedule. We have some pretty big dates coming up that we want to make sure Michael is at the high points. Both our beautiful children will be gradating high school June 1st, which means we will have a few weeks of family and friends coming in from out of town. We also need to work around our son’s freshman college orientation in June.
Michael’s feelings on all this, he is done. He doesn’t want to do any more right now. Radiation really didn’t have many side effects on him. He has had 2 “good” weeks, well better weeks, even though he has been having pain in his legs and back, he has been able to enjoy being out in the shop around cars. His hair has started to grow back. He just wants to go back to a normal life. He wants to work on cars again, he wants to be able to do things he could do a year ago. Over the last 8 months, so much has changed and as he says “I am done”. When he says this, I just give him time and then we will discuss our next step that we will fight together. If you know Michael, he is a fighter, but he also does not like being down for any amount of time. He always has to be up and going.
The doctors concern is that Michael’s counts have not climbed up where he would really like them. We will have to closely monitor his counts. His other concern is he is not sure how long his body will be able to take the chemotherapy. Our goal the first time was 6 treatments, but he stopped him at 5.
Michael and I still have a lot of discussing to do. We will update you when he has made his decisions.
Sunday, April 26, 2009
Tuesday, April 14, 2009
YEAH ~ DONE WITH RADIATION!!!
On Monday, Michael received his last dose of radiation. He didn’t feel that great after treatment. He said this treatment took a little longer than all the rest. He would have finished up last week, but he “skipped” his treatment on Thursday last week. Instead, on Thursday we took our son down to Nacogdoches, Texas (about a 3 hour drive) to check out Stephen F. Austin State University. We got a chance to check out the campus and to meet with his financial aid officer. Our son received his acceptance letter back in January and will be attending this fall. It is a beautiful campus located in East Texas. I guess this really means that youngest is finally growing up. The trip was a little much for Michael to handle. He was extremely tired by the time we got back home.
We had a lovely weekend. The kids helped their younger cousins (ages 4, 2, and 2) color eggs on Friday with grandma. Not sure who had more fun, the smaller kids or my kids. We woke up Sunday morning and attended Easter Service. Our son and his high school jazz band director played instrumental for the church choir. His director played his Trombone while he played his Trumpet for one hymn and then he played his French horn for another hymn. Between the choir singing and the two playing the horns, they all sounded amazing. I always love to watch and listen to him play any of his instruments. Then we came home and the kids hid eggs for the younger ones to have their Easter egg hunt. Again, I think the big kids had more fun.
Michael will have about 2 weeks to rest before we get to go back and see his oncologist. Hopefully we will have a “game” plan of what will happen next. Michael is getting stronger each day. He still has fatigue set in at times, but he knows when to stop and rest.
Please continue to pray for everyone. There are many others needing our continued prayers in their journey fighting cancer.
We had a lovely weekend. The kids helped their younger cousins (ages 4, 2, and 2) color eggs on Friday with grandma. Not sure who had more fun, the smaller kids or my kids. We woke up Sunday morning and attended Easter Service. Our son and his high school jazz band director played instrumental for the church choir. His director played his Trombone while he played his Trumpet for one hymn and then he played his French horn for another hymn. Between the choir singing and the two playing the horns, they all sounded amazing. I always love to watch and listen to him play any of his instruments. Then we came home and the kids hid eggs for the younger ones to have their Easter egg hunt. Again, I think the big kids had more fun.
Michael will have about 2 weeks to rest before we get to go back and see his oncologist. Hopefully we will have a “game” plan of what will happen next. Michael is getting stronger each day. He still has fatigue set in at times, but he knows when to stop and rest.
Please continue to pray for everyone. There are many others needing our continued prayers in their journey fighting cancer.
Saturday, April 4, 2009
Radiation Week 4
Michael has not had a very good week. His headaches have returned. He has also been having abdominal pain. They did say this may happen due to the location on his back when they adjusted his dosage this week. Next week they will be doing more adjustments and increasing his dosage even more. At least he will have the weekend off. Hopefully he will feel a little better tomorrow so we can enjoy the beautiful day. It’s supposed to be in the 80’s tomorrow here in Dallas.
We went to see his oncologist on Thursday. We had a nice long talk with him. We went over everything from beginning until now, his treatment plan, his surgeries, his appointments with his other doctors and what they had said, even his job status and if he will be able to return to work.
On his treatment, Michael was able to do 5 of the 6 chemo cycles they wanted to do in the beginning and he is currently doing his radiation. The next step would be to do possible chemo again. With Michael’s cancer, he is a little on the “rare” side. Ewings Sarcoma is generally a bone cancer. Michael’s was inside the spinal fluid entangled in his nerves. None of our doctors and those they have been discussing his case with has seen anything like this. Right now, they are trying to base his treatment plan as if it was located in a bone and if he was younger. Yeah he is older than the “norm” to have Ewings, but I have always said he is a kid at heart, and I can now say in the spine too.
The doctor wants us to finish up his radiation; right now he has 6 doses left, rest for a week or two, and then we will meet back with him on the 24th. Before that, he will have meetings with all of the other doctors (his radiation oncologist, neurosurgeon, etc), as well as meeting with the doctors down at MD Anderson. Both Michael’s oncologist and his radiation oncologist have been discussing his case with some doctors down there all along. They are the ones that created Michael’s treatment plan.
At this point we are not sure if the radiation oncologist will have any more scans scheduled after we finish radiation. Michael’s oncologist did say he may end up sending us down to Houston to speak with the doctors down there before we decide what to do. This will be one of the items we will discuss on his next visit.
As for work, the doctors still have Michael off work until May 1st. This time was to allow chemo, radiation, a few weeks to recover from radiation, and depending on what we decide on our next appointment. If they decide no more chemo and if they feel he will be able to the work, and then they may let him go back on May 1st. That was the plan when we left the doctor’s office yesterday.
Michael’s employer does have in their medical leave policy that after 6 months of being on medical leave, they could possibly terminate your employment. Michael has been off work since August 20th (which is right at 7 ½ months right now) when his problems in his back and legs got real bad and he needed to use a cane to get around. Since the first of March, he has been talking back and forth with his corporate office on trying to extend his time. They called him today and have decided to terminate his employment. They said that they have allowed him enough time and can no longer keep him employed. They did say that they do have a “6-month” re-hire policy that will allow him to keep his status if a position is open at that time.
We will just have to play it by ear on his job. I just keep telling him all I worry about and want is for my husband to fight this and to become healthy again. I know we will overcome this as any other obstacle we have come across in our lifetime. I just want to make sure that he takes his time and we take every step to make sure we do over-power this dreaded disease.
We do want to thank everyone for their kind messages, prayers, and support. That does bring us “HOPES”. For those of you that don’t know the meaning of “HOPES” in “HOPES for Michael”, it stands for “Helping Over Power Ewings Sarcoma”. We also want to say thank you for visiting Michael’s page. Please continue to keep Michael and all those in our Ewings family in your prayers.
Melodie
We went to see his oncologist on Thursday. We had a nice long talk with him. We went over everything from beginning until now, his treatment plan, his surgeries, his appointments with his other doctors and what they had said, even his job status and if he will be able to return to work.
On his treatment, Michael was able to do 5 of the 6 chemo cycles they wanted to do in the beginning and he is currently doing his radiation. The next step would be to do possible chemo again. With Michael’s cancer, he is a little on the “rare” side. Ewings Sarcoma is generally a bone cancer. Michael’s was inside the spinal fluid entangled in his nerves. None of our doctors and those they have been discussing his case with has seen anything like this. Right now, they are trying to base his treatment plan as if it was located in a bone and if he was younger. Yeah he is older than the “norm” to have Ewings, but I have always said he is a kid at heart, and I can now say in the spine too.
The doctor wants us to finish up his radiation; right now he has 6 doses left, rest for a week or two, and then we will meet back with him on the 24th. Before that, he will have meetings with all of the other doctors (his radiation oncologist, neurosurgeon, etc), as well as meeting with the doctors down at MD Anderson. Both Michael’s oncologist and his radiation oncologist have been discussing his case with some doctors down there all along. They are the ones that created Michael’s treatment plan.
At this point we are not sure if the radiation oncologist will have any more scans scheduled after we finish radiation. Michael’s oncologist did say he may end up sending us down to Houston to speak with the doctors down there before we decide what to do. This will be one of the items we will discuss on his next visit.
As for work, the doctors still have Michael off work until May 1st. This time was to allow chemo, radiation, a few weeks to recover from radiation, and depending on what we decide on our next appointment. If they decide no more chemo and if they feel he will be able to the work, and then they may let him go back on May 1st. That was the plan when we left the doctor’s office yesterday.
Michael’s employer does have in their medical leave policy that after 6 months of being on medical leave, they could possibly terminate your employment. Michael has been off work since August 20th (which is right at 7 ½ months right now) when his problems in his back and legs got real bad and he needed to use a cane to get around. Since the first of March, he has been talking back and forth with his corporate office on trying to extend his time. They called him today and have decided to terminate his employment. They said that they have allowed him enough time and can no longer keep him employed. They did say that they do have a “6-month” re-hire policy that will allow him to keep his status if a position is open at that time.
We will just have to play it by ear on his job. I just keep telling him all I worry about and want is for my husband to fight this and to become healthy again. I know we will overcome this as any other obstacle we have come across in our lifetime. I just want to make sure that he takes his time and we take every step to make sure we do over-power this dreaded disease.
We do want to thank everyone for their kind messages, prayers, and support. That does bring us “HOPES”. For those of you that don’t know the meaning of “HOPES” in “HOPES for Michael”, it stands for “Helping Over Power Ewings Sarcoma”. We also want to say thank you for visiting Michael’s page. Please continue to keep Michael and all those in our Ewings family in your prayers.
Melodie
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