With his treatments starting so late in the day this round, I will be a day behind on updating.
We did speak with the doctor yesterday morning. He is mainly concerned with Michael’s counts. His WBC is at 2.4, platelets are still at 87, and his hemoglobin is at 12. These cycles are to run for 5 days of treatment and the 6th day to get his Nueslasta shot and go home. With Michael’s counts, the doctor has decided to cut this cycle to 3 days of meds, 4th day shot and go home which means I should be able to take him home Sunday. The doctor has ordered migraine medicine for his headaches. We will see if that helps.
The doctor just loved Michael’s hair. He had to come back into the room and take a picture of it to take back to the office. As we go for his walks, he gets all kinds of stares are some just laughing out loud.
Around 3:30 in the afternoon yesterday, they started him on his pre-meds. He began his chemo around 4:10 and wasn’t finished until around 3:30 this morning. On the first night, Michael did have some nausea, and was barely able to keep it controlled. Last night, he did have some nausea, but nothing like the first night. He is starting to feel the fatigue.
Please continue to pray for everyone who is suffering from this dreaded disease and other cancers. We will try to update again tomorrow.
Saturday, June 6, 2009
Thursday, June 4, 2009
Extremely Busy 2 Weeks ~
We have had such a busy time the past few weeks. First, let me apologize to everyone. I am so far behind reading everyone’s care pages / caringbridge sites; I hope everyone is doing ok. Michael and I have been praying for everyone even though we haven’t had the time to read and post.Michael has been working every hard on trying to get things done before coming in for chemo. We’ve had family in from out of town for the kids’ graduation. We had a great time with the family. It made for a nice few weeks. We spent some time at the lake. Michael had a chance to go fishing. It has been a long time since he’s been fishing. He also had a great visit with his mom. Just wish she could have stayed longer. It was nice to have her here with Michael.
I also had my brother come in from out of town. I was glad he was able to make it down with his family. We did get to meet his girlfriend’s 16 year old daughter. She is 2 years cancer free. She was diagnosed with Burkitt's Lymphoma. She and Michael hit it off from the beginning. You could see that connection. I think it was great for Michael to communicate with someone who had to go through what he has too. Plus she is just a great kid. Still can’t wait to meet the girlfriend and her other two kids. If any one is in Kansas City are this weekend, please stop by the Hyvee in Mission, Kansas, located on Martway. They have their own Alex’s Lemonade Stand on June 5th and 6th.
On Monday, June 1st, Michael and I got to watch both our children walk across the stage and receive their diploma. We are extremely proud of both our son and daughter. Yes, mom did cry. I think I cried for several times. Our son took off this morning for his freshmen orientation already down at Stephen F. Austin University. They just grow up so fast.
Michael decided that since he is going to lose his hair again to chemo, he wanted to dye his hair lime green. So, the night before graduation, Michael bleached out his hair and then dyed it lime green. Yes, doesn’t he look lovely? He sure gets all the heads to turn.
To check out more photos of the kids and Michael go to Michael's carepages website at http://www.carepages.com/carepages/HOPESforMichael.
This morning, we meet his PA at the Jackson Building and Michael was admitted to begin his 5-day chemo treatments again, green hair and all. The nurses just loved it. They did a chest X-ray before accessing his port to make sure it was still ok. Last week, he was taking care of our pig and was leaning against the fence and it slid forward against his port, causing it to move some. He also has been having headaches since he bumped his port. His port does look good and in place. He finally had his port accessed and his pre-meds started around 4:00 this afternoon. His counts don’t look that great. His WBC is at 2.3 and his platelets are at 87. They did go ahead and begin his chemo. This is the first time he will be receiving the Etoposide. Right now he is receiving his Ifosfamide. He did receive that one before. So far he is doing ok with the treatment. He does have some nausea, but he is able to control it for now. He still has 2 more doses of Mesna tonight and still has his post-hydration to get.
His doctor did call us around 5:30 this evening. He is very concerned with his blood counts and the headaches. He said he will be in first thing in the morning so we can come up with a game plan. He did mention the possibility of doing a brain MRI again for the headaches and possibly doing another bone marrow test to see if they can figure out why his counts are staying low. Michael does NOT want to do that one unless they can knock him out. The first time he had one of those, he said he could not stand the pain and he said he will tell the doctor no.
Ever since his last chemo back in January, his counts haven’t climbed back up to where the doctor would like them to be. They have been staying around 2.5K. Hopefully we will have better answers in the morning.
Michael and I are working on coming up with some fundraising ideas. As soon as we get somewhere with those ideas, we will let everyone know.
We ask everyone to continue to pray for everyone suffering from this dreaded disease and other cancers.
Friday, May 22, 2009
SCANS~
Just a quick update for everyone. I will try to update more later on.
Michael had all his scans on Friday May 15th. He had CT scans, MRI’s, and the also did a lumbar puncture for the spinal tap. He was down for a few days with the spinal tap.
We finally did talk with his doctor late Wednesday evening. The spot (or shadowing) where the tumor was is still showing on the MRI. It has not changed any from the previous MRI. They did the spinal tap and tested his fluid. IT IS CLEAR OF DISEASE!! They are saying with the surgery and radiation that the spot may stay. So at this point he is still clear. We are very happy to hear this.
So we will proceed as discussed at the first of the month. He will go in for his “in-patient” chemo on June 4th for 5 day and repeat every 3 weeks. We are not sure how many treatments he will have at this point; it will all depend on how well his body can manage the chemo this time.
Please continue to keep those fighting this dreaded disease and their families in your prayers.
Michael had all his scans on Friday May 15th. He had CT scans, MRI’s, and the also did a lumbar puncture for the spinal tap. He was down for a few days with the spinal tap.
We finally did talk with his doctor late Wednesday evening. The spot (or shadowing) where the tumor was is still showing on the MRI. It has not changed any from the previous MRI. They did the spinal tap and tested his fluid. IT IS CLEAR OF DISEASE!! They are saying with the surgery and radiation that the spot may stay. So at this point he is still clear. We are very happy to hear this.
So we will proceed as discussed at the first of the month. He will go in for his “in-patient” chemo on June 4th for 5 day and repeat every 3 weeks. We are not sure how many treatments he will have at this point; it will all depend on how well his body can manage the chemo this time.
Please continue to keep those fighting this dreaded disease and their families in your prayers.
Sunday, May 10, 2009
HAPPY MOTHERS DAY!!~
First, I want to say Happy Mothers Day to my mom. Mom, you are always there for all of us (me and my family, and my brothers and their families). But most of all, I can never thank you enough for all you have done for Michael and I these last 9 months. Anything we ask, you have done and then some. You have truly made it easier in dealing with all Michael and I have to go through. Mom, you are the BEST!!
Second, I want to say Happy Mothers Day to my mother-in-law. Even through you are many miles away, we thankful for everything you have done for us too. We can NOT wait until the end of the month. We are so excited to have you come down to stay with us for a few weeks. Michael is making big plans for ya.
Next, I want to say Happy Mothers Day to all you amazing women out there. Each and everyone one of us have a different story to tell about our children. And each child moles us differently to be the mothers we are. Each mother is special, but I have met some truly amazing mothers out there through carepages / caringbridge. Each of your stories not only tell a story, it helps those going through the same thing, but it also shows that each mother has no limits to care for her child. It shows that unconditional bond we have for our kids and nothing (not even cancer) can stand in the way for you to care for them. Even though I don’t know most of you that follow Michael, I am blessed to have the ability to follow your stories. You all give us HOPES to over-power this dread disease.
Just a quick update on Michael, we are waiting for the doctor’s office to set up all those scans. They are going to do multiple MRI’s, CT scans, chest X-ray, spinal tap, and a few more. If the scans come back good, Michael can wait until after our kids’ graduation to start chemo again. If they do find anything, they will put him in soon to begin. Michael wants to wait so he can spend time with his family when they come in to visit and so he knows he is be fine to go to graduation. His family will be here for two weeks and he doesn’t want to be in his fatigue stage while they are here. He is also worried about his counts if we start before they graduate.
I hope each mom out there has the best day of their lives today. Again, Happy Mothers Day to all you moms!!
Second, I want to say Happy Mothers Day to my mother-in-law. Even through you are many miles away, we thankful for everything you have done for us too. We can NOT wait until the end of the month. We are so excited to have you come down to stay with us for a few weeks. Michael is making big plans for ya.
Next, I want to say Happy Mothers Day to all you amazing women out there. Each and everyone one of us have a different story to tell about our children. And each child moles us differently to be the mothers we are. Each mother is special, but I have met some truly amazing mothers out there through carepages / caringbridge. Each of your stories not only tell a story, it helps those going through the same thing, but it also shows that each mother has no limits to care for her child. It shows that unconditional bond we have for our kids and nothing (not even cancer) can stand in the way for you to care for them. Even though I don’t know most of you that follow Michael, I am blessed to have the ability to follow your stories. You all give us HOPES to over-power this dread disease.
Just a quick update on Michael, we are waiting for the doctor’s office to set up all those scans. They are going to do multiple MRI’s, CT scans, chest X-ray, spinal tap, and a few more. If the scans come back good, Michael can wait until after our kids’ graduation to start chemo again. If they do find anything, they will put him in soon to begin. Michael wants to wait so he can spend time with his family when they come in to visit and so he knows he is be fine to go to graduation. His family will be here for two weeks and he doesn’t want to be in his fatigue stage while they are here. He is also worried about his counts if we start before they graduate.
I hope each mom out there has the best day of their lives today. Again, Happy Mothers Day to all you moms!!
Sunday, April 26, 2009
Dr. Appointment and his Next Steps ~
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.
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.
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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