We went to his appointment on Monday, had his blood drawn and asked the doctor about a few “side effects” to see what we needed to do and if they were “normal”. The doctor put him on an antibiotic for the “red bumps” on his face and neck area, and gave him what they call “magic mouthwash” which he will take before he eats to help with the tenderness in his mouth. He did talk to the doctor about some hip pain, but all thought it was “normal”. His counts are low, which this is the time they are suppose to be, so he needs to be extremely careful with any exposure to germs, illnesses, etc.
As we were heading home, his back and hips were hurting a bit more. By Monday evening, the pain was to the point of him taking some of his “pain medicine”. I gave him second does later in the evening and it still did not ease the pain. By this point, the pain was the exact same pain he was experiencing before the surgery to remove the tumor. We both began to get scared thinking the tumor might already be coming back. He called the oncologist late that evening (I am sure we woke him up). He told me to take Michael to the ER and he would call in some tests and meet us there.
We checked into the ER, and they finally ran a CT scan about 3:00 in the morning. The ER doctor did say the CT scan was clean and that Michael’s oncologist was on his way in to admit Michael for further testing. His doctor showed up, talked to us for a bit and admitted him back into the Jackson building. He did get to see Michael in pain and how the pain affected him. The oncologist ordered a MRI on him and said he was going to contact Michael’s neurosurgeon and have him look into this as well.
Michael went down for the MRI early Tuesday morning. The MRI did show that his nerves where they removed the tumor was swollen and inflamed causing the pain. We spoke with his neurosurgeon and he suggested putting Michael on a “nerve” medicine to help keep the nerves calm. He did say that what might have caused this is from going from doing nothing (the first few days he came home from his Chemo treatments) to somewhat overdoing it (going and spending the evening at the kids’ competition). With the medicine and certain exercises he must do everyday, he should not experience this again.
Michael’s oncologist wanted us to speak with a radiation oncologist to discuss a possible change in the treatment plan. We met with him today, discussed what Michael was experiencing. He will still need to discuss everything with the oncologist first, but it sounded like he would like to get a few more chemo treatments in, redo the tests we did yesterday and see if we wanted to do the radiation before normally planned (which would be after the 6th chemo treatment).
Finally at 6:00 this evening, they discharged him from the hospital and we were able to finally come home. He actually feels pretty good as we are able to keep the nerve pain under control and not having him too medicated.
He is still scheduled to go back to the oncologist on his normal Monday appointments. That will be the day we will discuss his next treatment time and if they will decide to change any of the plan.
Wednesday, October 29, 2008
Sunday, October 26, 2008
His First Week Home after Treatment
Sorry for not updating sooner, but his first week home has been very tiring for all of us. The first few days, he was extremely tired and did have some nausea. He really didn’t start eating until Wednesday evening and then it wasn’t much. His head is tender to the touch and the inside of his mouth is becoming more sensitive. His senses (smell, taste, etc) have changed. He is having some other side effects, but I think they might be manageable for him.
The first few days home, he really didn’t want to talk to anyone or have anything to do with the babies (our 2 Dachshunds DeeDee and Squiggy). Thursday evening, he actually talked to some people on the phone and laughed for a long time. I have decided that a few days after he gets home, I will have some call him to make him laugh. They always say laughter is the best medicine and after being on the phone for a few hours laughing, he actually started to feel a little better. I would say that they first few days home were pretty miserable for him. But by Thursday, he started to pick back up. He just has to take things in moderation now.
Both Rebbecca and Michael are in marching band again this year and went to their district UIL competition a few weeks ago. While there, they received a superior rating which meant they got to move on to the next level which would be area competition. They had their area competition yesterday. Out of 21 High School Marching bands, 10 bands get picked to go to finals that evening. From that, the judges only pick 4 bands to move on to state competition in a week in San Antonio. The Kaufman Lions Marching Band (the kids’ school) did make it through preliminary competition yesterday to the finals last night, but did not place in the top 4. All the kids are very sad.
Michael actually felt like going with me to what the kids perform yesterday. We planned it to get their right before their performance and did. We watched their performance and stayed through final performances. Today, he is tired, but was glad to go watch the kids. We are very proud of their performances, but sad they didn’t get to make it to state.
Tomorrow we go back to the oncologist and get his blood work done. We will go there every Monday.
The first few days home, he really didn’t want to talk to anyone or have anything to do with the babies (our 2 Dachshunds DeeDee and Squiggy). Thursday evening, he actually talked to some people on the phone and laughed for a long time. I have decided that a few days after he gets home, I will have some call him to make him laugh. They always say laughter is the best medicine and after being on the phone for a few hours laughing, he actually started to feel a little better. I would say that they first few days home were pretty miserable for him. But by Thursday, he started to pick back up. He just has to take things in moderation now.
Both Rebbecca and Michael are in marching band again this year and went to their district UIL competition a few weeks ago. While there, they received a superior rating which meant they got to move on to the next level which would be area competition. They had their area competition yesterday. Out of 21 High School Marching bands, 10 bands get picked to go to finals that evening. From that, the judges only pick 4 bands to move on to state competition in a week in San Antonio. The Kaufman Lions Marching Band (the kids’ school) did make it through preliminary competition yesterday to the finals last night, but did not place in the top 4. All the kids are very sad.
Michael actually felt like going with me to what the kids perform yesterday. We planned it to get their right before their performance and did. We watched their performance and stayed through final performances. Today, he is tired, but was glad to go watch the kids. We are very proud of their performances, but sad they didn’t get to make it to state.
Tomorrow we go back to the oncologist and get his blood work done. We will go there every Monday.
Monday, October 20, 2008
Day 5 – He gets to go home!!
We talked with his oncologist this morning. He said right now his blood counts look good and he needs to get a shot and we can go home!! We will have to go back to the office every Monday to have his blood drawn and meet with the oncologist in two weeks.
Before we left, he got his shot (to help regenerate the white blood cells / bone marrow) and finished up his other preventative medicines. They did say that one of the side effects from the shot is his bones will hurt. We did get home this afternoon and he is resting. He is extremely tired and week today. He does have nausea again.
I don't think either of us expected it to be like this. I mean, we did our research, we had others tell us what to expect; but until you go through it, or watch your loved one go through it, you really can’t describe it. From what we here, he will still feel down for a few more days. I will say that the nursing staff we had in the hospital is very good at explaining things to us.
He will get to be home now for 3 weeks. When we go back to the oncologist on the 3rd, we will discuss the next treatment date.
Before we left, he got his shot (to help regenerate the white blood cells / bone marrow) and finished up his other preventative medicines. They did say that one of the side effects from the shot is his bones will hurt. We did get home this afternoon and he is resting. He is extremely tired and week today. He does have nausea again.
I don't think either of us expected it to be like this. I mean, we did our research, we had others tell us what to expect; but until you go through it, or watch your loved one go through it, you really can’t describe it. From what we here, he will still feel down for a few more days. I will say that the nursing staff we had in the hospital is very good at explaining things to us.
He will get to be home now for 3 weeks. When we go back to the oncologist on the 3rd, we will discuss the next treatment date.
Sunday, October 19, 2008
Day 4 of First Chemo Cycle
Today the fatigue really set in. He very week and had some nausea. This is the last chemo treatment in this cycle. You can see where this has taken a lot out of him. We will meet with the doctor in the morning and see what the schedule will be for the next few days. I do know he had said something about giving him a shot tomorrow but not sure if they will let him come home tomorrow or Tuesday.
I will try to give a better update tomorrow.
I will try to give a better update tomorrow.
Days 2 and 3 of first chemo cycle
Someone did ask if the cancer had spread. No. All the results came back good from the bone biopsy, bone marrow, bone scan and the CT scan.
Day 2:
Yesterday was an alright day for him. They like to begin them at the same time every day so he received his chemo treatment in the afternoon. The whole process each day will take several hours so he wasn’t done until late yesterday evening. At least they were able to control his nausea.
Day 3:
He is feeling more fatigue each day of the treatments. This evening he looked very tired. They are still keeping the nausea under control at this point so that is a good thing. He will get one more round of the chemo meds tomorrow. If all goes well after that, he should be able to go home Monday or Tuesday.
Day 2:
Yesterday was an alright day for him. They like to begin them at the same time every day so he received his chemo treatment in the afternoon. The whole process each day will take several hours so he wasn’t done until late yesterday evening. At least they were able to control his nausea.
Day 3:
He is feeling more fatigue each day of the treatments. This evening he looked very tired. They are still keeping the nausea under control at this point so that is a good thing. He will get one more round of the chemo meds tomorrow. If all goes well after that, he should be able to go home Monday or Tuesday.
Friday, October 17, 2008
Back to the Hospital (October 16th) - First Chemotherapy Treatment
We arrived at the hospital at 7am. We met with the doctor and he went through the entire process. He will be getting 3 different meds for Chemo; one he will get the first day only, one he will get on the first and second day, and one he will get for the first 4 days. On the 5th day he will get a shot that will help with the blood counts and then he should be able to go home. Each drug does have different side effects that we will have to monitor. He will also be getting some preventative medicines throughout the treatments that should help to keep some of the major side effects not be as bad.
Around 11:00am they did take him into surgery. They implanted a port into his chest. The port is a catheter that they place into the jugular vein through his chest which allows them draw blood, place IV’s, and where he will get his chemo. He came out of recovery around 3:00. They began his Chemo treatment around 5:00 and it lasted until about 9:00. He did get very sick afterwards.
Around 11:00am they did take him into surgery. They implanted a port into his chest. The port is a catheter that they place into the jugular vein through his chest which allows them draw blood, place IV’s, and where he will get his chemo. He came out of recovery around 3:00. They began his Chemo treatment around 5:00 and it lasted until about 9:00. He did get very sick afterwards.
Michael's Decision
After lots of consideration, Michael is going to begin the treatments. We will go to the Jackson Building of Presbyterian Hospital in Dallas the morning of Thursday, October 16th.
Please keep us in your thoughts and prayers.
Please keep us in your thoughts and prayers.
Second meeting with Oncologist (October 9th) - We know a little more!!
We met with the oncologist again. We discussed lots of things with the doctor and had a lot to think about. As he stated, this is a pediatric bone cancer. We need to treat this cancer very aggressively with lots of chemotherapy. He has seen where there are a few documented cases similar to Michaels (location of the cancer and his age), but not many. He is going to treat this cancer as he would a kid. He did give us the option of going to Houston to MD Anderson and meeting with an oncologist that specializes in sarcomas.
Each Chemotherapy treatment cycle will consist of 1 week in the hospital and three weeks home. He will get chemotherapy for 5 days while in the hospital and then go home. We will do this for 6 cycles. After that, they will begin radiation and then re-evaluate. At that point they may or may not decide to do another 6 cycles of chemo.
He did say that all the tests they ran earlier (bone biopsy, bone marrow, bone scan, and the CT) did come back good. So that means only the tumor that was in the spinal fluid was it. He asked us to go home, think about what we wanted to do and call him again in the morning.
Each Chemotherapy treatment cycle will consist of 1 week in the hospital and three weeks home. He will get chemotherapy for 5 days while in the hospital and then go home. We will do this for 6 cycles. After that, they will begin radiation and then re-evaluate. At that point they may or may not decide to do another 6 cycles of chemo.
He did say that all the tests they ran earlier (bone biopsy, bone marrow, bone scan, and the CT) did come back good. So that means only the tumor that was in the spinal fluid was it. He asked us to go home, think about what we wanted to do and call him again in the morning.
More Testing (October 6th)
We went back to the Hospital to have his bone scan and CT scan done. This process took all day.
First meeting with Oncologist (October 2nd)
We did find out it is called a "Ewing Sarcoma". This type is generally found in younger (10 - 20 years old) people and usually in the extremities and is generally a "bone" cancer. It is not always in the bone tissue, but can be in the muscle tissue and can "rarely" get in the nerve sheath. They say this is very rare because of the location and with his age. We are doing what they call "staging" gathering all the information they can before we do decide on a treatment plan.
They did do a bone marrow test today and also took biopsy off the bone. Yes, it was very painful for him. Monday I will have to take him back to the hospital for more testing. They are going to run a bone scan (which takes about 4 - 5 hours) and do a full body CT scan to include all the parts they didn't get last month.
Every Tuesday they have what the doctor referred to as a "sarcoma" conference. The Doctor with take Michael's case, present it to them and discuss it. It's a team of oncologists, orthopedic surgeons, and a bunch of other medical professions involved in cancer here in the Dallas area.
We will go back to see the Oncologist next Thursday to follow up with the testing and the meeting. At that point we may discuss treatment or the may send him down to MD Anderson in Houston and have them do a workup for a second opinion.
Generally the way they would treat this is with Chemo, Radiation, and then possible removal, but they had already removed it. Right now he is not real sure what treatment options they are going to go with. He did say he does want to go after it progressively.
They are talking possibly both Chemo and Radiation but due to the rarity of this (his age and the location of the sarcoma) they are not real sure if the Chemo will even get to the effected area. He did say it is likely it could come back if we do nothing.
Please keep us in your thoughts and prayers!!
Initial Diagnoses of the Tumor
We did finally get some information (not enough) on the tumor. They say it is not-benign (cancer but not sure what level yet) and that it is a type of sarcoma (a malignant tumor that begins growing in connective tissue such as muscle, bone, fat, or cartilage. Sarcomas may occur in any part of the body, and are typically fast-growing and quick to spread). They still are not real sure what it is and have sent it off for further testing. They have now referred him to an oncologist. Right now the oncologist is going over his entire case history with both doctors before we can get in to see him. We are hoping to get in next week to see what we will do from here. I do know they said he will need further testing.
Michael actually feels pretty good now that they removed the tumor and it is not messing with his nerves. His pain level has drastically dropped and his walking is getting steadier each day. As for the news this week, well we will have to see. We were hoping for the best and now it looks like the road is getting longer to travel.
I will keep you updated as we know more. Please keep us in your thoughts and prayers through this time.
Michael actually feels pretty good now that they removed the tumor and it is not messing with his nerves. His pain level has drastically dropped and his walking is getting steadier each day. As for the news this week, well we will have to see. We were hoping for the best and now it looks like the road is getting longer to travel.
I will keep you updated as we know more. Please keep us in your thoughts and prayers through this time.
Tumor Removal
Some of you may know or may not know. Some may only know part of the story so I may repeat myself on parts of it.
Earlier this year (around March / April), Michael was having problems with his legs and hands and we went to see our new family doctor at the time (our old family doctor had to retire and become Mayor of Kaufman). He said it was arthritis, which I have seen arthritis and knew it wasn’t that. We did know, or at least we felt, it was not related to his two back surgeries back in 2006. So not liking that answer, we found ourselves a new family doctor.
Going to this doctor and talking with his PA, they felt that this was a bigger picture with something possible like MS or Lupus and wanted to eliminate all things. They did a complete blood workup and sent him for a brain MRI and then sent us to a neurologist specializing in MS. The brain MRI showed he did have a brain (joke with us) and that it looked very healthy. The neurologist ruled out MS and said it was carpal tunnel syndrome. Knowing Michael, he got frustrated with doctors, and went on with the pain and discomfort. The symptoms he has was not all the time, they would come, stay for a bit, and then get better.
Mid-August, the symptoms got pretty bad. At this point, his legs would jerk, causing his back to hurt where the fusion is from his surgery. He had weakness in his legs. He then called his orthopedic surgeon and scheduled an appointment. It did take about 1 ½ weeks to get in to see him and we saw him on Tuesday August 26th. At times, Michael had to struggle to walk. The doctor took one look at Michael and admitted him to the hospital for testing. He said that he looked worse than both his surgeries put together.
They began running all kinds of tests on Wednesday and found a tumor located inside the spinal cord in the fluid and it was entangled with his nerves and called in a neurosurgeon. By Friday he was not able to walk at all. Friday August 29th, he went into surgery to have the tumor removed. They surgery lasted 6 ½ hours. They neurosurgeon did say he able removed the entire tumor and only 3 nerves were damaged and un-repairable by the tumor. We will have to wait and see what they are and how it can affect him. They did s end the tumor off for testing to see what it is. They told me it could take several days to see what it is. They had him in ICU from Friday evening until Monday afternoon due to the fact that they had to open the spinal cord and drain the fluid. Wednesday he was able to get up and actually walk again. They let us go home on Thursday September 4th.
All he is able to do right now is sit, stand, and walk. No lifting, bending, twisting, etc. He has been off work now for over a month and we don’t know if and when he will get to go back. We do go back next week sometime to the neurosurgeon to see if he will be able to begin doing more. His orthopedic surgeon is staying on the case as his primary doctor.
Earlier this year (around March / April), Michael was having problems with his legs and hands and we went to see our new family doctor at the time (our old family doctor had to retire and become Mayor of Kaufman). He said it was arthritis, which I have seen arthritis and knew it wasn’t that. We did know, or at least we felt, it was not related to his two back surgeries back in 2006. So not liking that answer, we found ourselves a new family doctor.
Going to this doctor and talking with his PA, they felt that this was a bigger picture with something possible like MS or Lupus and wanted to eliminate all things. They did a complete blood workup and sent him for a brain MRI and then sent us to a neurologist specializing in MS. The brain MRI showed he did have a brain (joke with us) and that it looked very healthy. The neurologist ruled out MS and said it was carpal tunnel syndrome. Knowing Michael, he got frustrated with doctors, and went on with the pain and discomfort. The symptoms he has was not all the time, they would come, stay for a bit, and then get better.
Mid-August, the symptoms got pretty bad. At this point, his legs would jerk, causing his back to hurt where the fusion is from his surgery. He had weakness in his legs. He then called his orthopedic surgeon and scheduled an appointment. It did take about 1 ½ weeks to get in to see him and we saw him on Tuesday August 26th. At times, Michael had to struggle to walk. The doctor took one look at Michael and admitted him to the hospital for testing. He said that he looked worse than both his surgeries put together.
They began running all kinds of tests on Wednesday and found a tumor located inside the spinal cord in the fluid and it was entangled with his nerves and called in a neurosurgeon. By Friday he was not able to walk at all. Friday August 29th, he went into surgery to have the tumor removed. They surgery lasted 6 ½ hours. They neurosurgeon did say he able removed the entire tumor and only 3 nerves were damaged and un-repairable by the tumor. We will have to wait and see what they are and how it can affect him. They did s end the tumor off for testing to see what it is. They told me it could take several days to see what it is. They had him in ICU from Friday evening until Monday afternoon due to the fact that they had to open the spinal cord and drain the fluid. Wednesday he was able to get up and actually walk again. They let us go home on Thursday September 4th.
All he is able to do right now is sit, stand, and walk. No lifting, bending, twisting, etc. He has been off work now for over a month and we don’t know if and when he will get to go back. We do go back next week sometime to the neurosurgeon to see if he will be able to begin doing more. His orthopedic surgeon is staying on the case as his primary doctor.
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