"Neutrophils are a type of white blood cell. The absolute neutrophil count is commonly called the ANC. Neutrophils are key components in the system of defense against infection. An absence or scarcity of neutrophils (a condition called neutropenia) makes a person vulnerable to infection. After chemotherapy, radiation, or a blood or marrow transplant, the ANC is usually depressed and then slowly rises, reflecting the fact that the bone marrow is recovering and new blood cells are beginning to grow and mature." (This definition was found on the internet.)
Okay- now that you all have had your biology lesson for the day, I will explain what this means to Michael. We went to Syracuse for his treatment today. He was supposed to go back to getting both drugs after 2 weeks of only receiving the one. The nurses accessed his port and drew a blood sample. While we waited for the blood tests to come back, they started giving Michael his pre-meds for nausea.
Then Dr. Kennedy came to tell us that although his overall white cell count looked to be in acceptable ranges, his neutrophils were too low to receive chemo this week. They should be over 1,000 and Michael's were 540. She also said if they go below 500 and Michael comes down with any sort of infection, he will have to be hospitalized. The good news is that this is not uncommon and his counts should come back up on their own by next week.
One of the people that reads this blog has experience with adult chemo patients and got a message to me that I should ask about the dangers of the long term antibiotic that Michael is on. (Thanks for the heads up!) Specifically - would it kill the "good" bacteria in his digestive system and cause all sorts of problems? I talked to Dr. Kennedy about that and she said that Michael is on a very low dose and shouldn't have any problems. But, if he starts to show some negative signs, she would have us give Michael active yeast cultures (like those found in yogurt). I asked her if it would be a good idea to try to get him to eat yogurt regularly now and she said "yes". So, that is what we are going to do.
Keep your fingers crossed that Michael doesn't come down with any infections and that his neutrophil count rises. I will keep everyone posted. In the meantime, please keep Michael in your thoughts and prayers, JoAnne
Friday, February 29, 2008
Thursday, February 28, 2008
Michael had a fun day...
Michael had fun today. He went to daycare this morning and then on to school. He had his picture taken today for the school yearbook since he started school late and wasn't there when they took pictures in the fall. I wet his hair down this morning and it looked very thin and there were a lot of bald spots. Fortunately when it dried, the bald areas weren't very noticeable.
When Michael got off the bus this afternoon, he and I went back to my work for a surprise. My boss's son-in-law is a commercial photographer and was recently in Las Vegas photographing a New Holland trade show. (For those of you that don't know everything there is to know about heavy equipment like everyone in our house does - New Holland makes tractors and construction equipment.) He gathered a whole box of goodies for Michael and they arrived today. There was a neat calender, a hat, some tote bags, an awesome toy bulldozer, a whole box of tractor key chains and some misc stuff. Michael was thrilled! He is going to take the box of key chains to school Monday to share with the other kids.
When we got back home, Michael had some dinner and then Uncle Jeff and his son, Michael, came to pick him up. Then the 3 of them went to a PeeWee wrestling practice. Michael had a great time. (And, Jeff and I got to go on a dinner date for the first time in many, many months.) When Michael got home tonight, he had fun showing Daddy the "moves" he learned. It was pretty funny.
Tomorrow is back to the full chemo regimen. I hope Michael does well with it. My Great Aunt Florie ( a very special lady who is very, very dear to all of us) sent Michael a package last week full of all sorts of goodies. She included a video of "Stuart Little 2". We'll take it with us tomorrow so Michael can watch it during his treatment. I will post again to let everyone know how it goes. Please keep Michael in your thoughts and prayers, JoAnne
P.S. Jenny is coming home this weekend to meet with her wedding party and pick out bridesmaid's dresses. Michael always loves when his sister comes home so he should have a great weekend.
When Michael got off the bus this afternoon, he and I went back to my work for a surprise. My boss's son-in-law is a commercial photographer and was recently in Las Vegas photographing a New Holland trade show. (For those of you that don't know everything there is to know about heavy equipment like everyone in our house does - New Holland makes tractors and construction equipment.) He gathered a whole box of goodies for Michael and they arrived today. There was a neat calender, a hat, some tote bags, an awesome toy bulldozer, a whole box of tractor key chains and some misc stuff. Michael was thrilled! He is going to take the box of key chains to school Monday to share with the other kids.
When we got back home, Michael had some dinner and then Uncle Jeff and his son, Michael, came to pick him up. Then the 3 of them went to a PeeWee wrestling practice. Michael had a great time. (And, Jeff and I got to go on a dinner date for the first time in many, many months.) When Michael got home tonight, he had fun showing Daddy the "moves" he learned. It was pretty funny.
Tomorrow is back to the full chemo regimen. I hope Michael does well with it. My Great Aunt Florie ( a very special lady who is very, very dear to all of us) sent Michael a package last week full of all sorts of goodies. She included a video of "Stuart Little 2". We'll take it with us tomorrow so Michael can watch it during his treatment. I will post again to let everyone know how it goes. Please keep Michael in your thoughts and prayers, JoAnne
P.S. Jenny is coming home this weekend to meet with her wedding party and pick out bridesmaid's dresses. Michael always loves when his sister comes home so he should have a great weekend.
Wednesday, February 27, 2008
We may have a future olympic swimmer on our hands...
Michael started swimming lessons at our local YMCA tonight. I have included a picture (left). It isn't the greatest picture but it was so warm in the pool area, my camera lens kept fogging up.
Michael did great! He had a lot of fun and I think he is going to be a natural. He acted sad when it was time to leave and his instructors thought something was wrong until he said he just wanted to keep swimming. We have been trying to get him into lessons since he was a baby but this is the first time they offered them at a time we could make. They have always been weekday mornings, when we are at work.
We have some hopeful news. According to the parents in my support group, children on the same protocol that Michael is on have a tendency to have their hair thin but not fall out completely. Although it is not a guarantee, it is encouraging. We thought once it started thinning it wouldn't stop until it was all gone and that isn't necessarily the case. Michael's sister, Jenny, is getting married this summer and we are looking forward to having some nice family pictures taken. (I know in the scheme of things, that is not that important but it is something little we are looking forward to.)
There is some exciting news, too. The Make A Wish Foundation has offered Michael a wish and we have accepted. We have been assigned 2 wish granters and they will be contacting us to set up a time to come and talk to him. Jeff & I have no idea what he will wish for but we are sure it will have something to do with construction trucks, fire trucks or trains. We are very happy for him and anxious for him to tell us what he wants. I will keep everyone posted on the process.
I understand I made quite a few people nervous when I didn't post last weekend - I promise not to do that again. I was just very down for a couple of days and everytime I started typing, I thought my posts were depressing so I would erase them. I promise not to scare anybody again. In the meantime, please keep Michael in your thoughts and prayers, JoAnne
Sunday, February 24, 2008
Sorry for the delay in updating...
It has been a very long couple of weeks and we are all very tired - most of all Michael. Jeff worked quite a bit of overtime the last couple of weeks. And, when he was home with Michael, I stayed at work to get some things done (it's that time of year for us accountants). Michael has been lethargic and has had very little appetite. Quite often, he just lays on his bed or in his chair and he isn't even interested in having the TV on. We've spent a lot of time sitting in his new chair reading books the last couple of weeks. Amazingly, his spirits are good though. We thought he might become cranky and whiny but he hasn't. He is just quiet. And we wish we could get him to eat a little bit more as he has lost 2 pounds.
We went to Syracuse Friday for Michael's treatment as usual. We can always tell went it is treatment day - that is the day we get up and it is snowing. It has either been snowing or blowing during every trip we have made to Rochester and Syracuse since November and it is starting to wear on our nerves.
Michael is right at home at the hospital now. He knows his way from the parking garage to unit 5C where his treatments are. He even knows which buttons to push on the elevators. When we enter the unit, he goes right over and opens the toy cupboards to get out the toys he likes. They have a Playmobil toy hospital set that he likes to play with. Or sometimes he builds something with the Lincoln Logs. The other thing he likes is a Hotwheels race track and toy cars.
Then when they call his name, he follows the nurse without even waiting for us. He tells her his date of birth (how they identify patients), takes off his shoes and gets on the scales. Then he stands with his back to the wall so she can measure him. Next, he climbs into the chair and pushes up his sleeve so she can take his blood pressure. As soon as the cuff deflates, he takes it off. He very openly tells the doctors and nurses anything that is bothering him each week. Like this week, he had a small scratch on his scalp and he made sure the nurse saw it. If he knew how to drive the car, he wouldn't need Jeff & I there at all!
Then we go to an exam room to see Dr. Kennedy. They were running behind this week, so the nurse said she would get the stuff to access Michael's port while we were waiting. As soon as she left, Michael unbuttoned his shirt, removed the bandage covering the numbing cream on his port and wiped it clean. We joked with Dr. Kennedy that Michael was starting without her and she laughed and said he did a great job. She also asked him to sing her the "Hot Chocolate" song he was singing the week before (which of course he did).
Dr. Kennedy talked about the treatment plan again. Starting this week, Michael goes back to receiving both chemo medicines, Carboplatin and Vincristine. That is what will happen for the next 4 weeks and then he will have a 2 week break. At that time, he will have his next MRI. Hopefully, it will show that this treatment plan is working (no tumor growth). If not, we may have to decide if we need to try something else. The problem is the other 2 options are the chemo that can cause secondary cancers and radiation. Both of those options are as scary as the disease they are meant to cure and scare the daylights out of us.
I guess that is why I didn't post until now. (Actually I logged on a couple of times but couldn't collect my thoughts enough to type). Jeff & I have spent the last couple of days trying come to terms with the fact that the future is still so uncertain for all of us. We have been so busy the last month and a half going through the treatment routines that we hadn't really thought much past each upcoming Friday. Now we realize the next MRI will be here before we know it and we are just praying for good news.
After the next MRI, Michael will go through 8 rounds of 4 weeks of treatments with 2 weeks off (about 46 weeks). The first 3 weeks, he will receive both drugs and the fourth week he won't get the Vincristine. Dr. Kennedy said the Vincristine toxicity can build much faster than the Carbo which is why he will only receive it for 3 of the 4 treatments. And, Michael is already experiencing the effects of the Vincristine. He didn't have any reflexes on either side this week.
Also, Jeff & I thought it looked like Michael's hair was getting thinner but we weren't sure. We expected to see clumps of hair falling out and we didn't. (Sometimes in the oncology unit, you will see clumps of hair on the floor and it just breaks your heart.) We asked Dr. Kennedy what she thought and she said it is definitely thinning. But, she referred to a little girl that was in the unit that day and was at the end of her year of treatments. She said the little girl's hair had started thinning in the beginning but then her body adjusted and she never lost anymore of it. Let's hope that is what happens with Michael! I am not sure how he will take it if he realizes he is losing his hair.
Michael's Uncle Jeff and Aunt Dee (our friends and neighbors) gave Michael a St. Nicholas medal this week. St. Nicholas is the patron saint of children. He likes wearing the medal because we told him that it was to protect him and he likes that.
As we were leaving the unit this week, Michael saw the nurse that usually takes care of him in the treatment room. He asked if he could talk to her and I said sure. He went to the window and waved to her and she came right out to see him (and his socks). He told her that he had gotten his medicine and we were on our way home but that he would see her next week. Like I said at the start of this post, it is amazing how comfortable Michael is with all that is going on. Please keep him in your thought and prayers, JoAnne
We went to Syracuse Friday for Michael's treatment as usual. We can always tell went it is treatment day - that is the day we get up and it is snowing. It has either been snowing or blowing during every trip we have made to Rochester and Syracuse since November and it is starting to wear on our nerves.
Michael is right at home at the hospital now. He knows his way from the parking garage to unit 5C where his treatments are. He even knows which buttons to push on the elevators. When we enter the unit, he goes right over and opens the toy cupboards to get out the toys he likes. They have a Playmobil toy hospital set that he likes to play with. Or sometimes he builds something with the Lincoln Logs. The other thing he likes is a Hotwheels race track and toy cars.
Then when they call his name, he follows the nurse without even waiting for us. He tells her his date of birth (how they identify patients), takes off his shoes and gets on the scales. Then he stands with his back to the wall so she can measure him. Next, he climbs into the chair and pushes up his sleeve so she can take his blood pressure. As soon as the cuff deflates, he takes it off. He very openly tells the doctors and nurses anything that is bothering him each week. Like this week, he had a small scratch on his scalp and he made sure the nurse saw it. If he knew how to drive the car, he wouldn't need Jeff & I there at all!
Then we go to an exam room to see Dr. Kennedy. They were running behind this week, so the nurse said she would get the stuff to access Michael's port while we were waiting. As soon as she left, Michael unbuttoned his shirt, removed the bandage covering the numbing cream on his port and wiped it clean. We joked with Dr. Kennedy that Michael was starting without her and she laughed and said he did a great job. She also asked him to sing her the "Hot Chocolate" song he was singing the week before (which of course he did).
Dr. Kennedy talked about the treatment plan again. Starting this week, Michael goes back to receiving both chemo medicines, Carboplatin and Vincristine. That is what will happen for the next 4 weeks and then he will have a 2 week break. At that time, he will have his next MRI. Hopefully, it will show that this treatment plan is working (no tumor growth). If not, we may have to decide if we need to try something else. The problem is the other 2 options are the chemo that can cause secondary cancers and radiation. Both of those options are as scary as the disease they are meant to cure and scare the daylights out of us.
I guess that is why I didn't post until now. (Actually I logged on a couple of times but couldn't collect my thoughts enough to type). Jeff & I have spent the last couple of days trying come to terms with the fact that the future is still so uncertain for all of us. We have been so busy the last month and a half going through the treatment routines that we hadn't really thought much past each upcoming Friday. Now we realize the next MRI will be here before we know it and we are just praying for good news.
After the next MRI, Michael will go through 8 rounds of 4 weeks of treatments with 2 weeks off (about 46 weeks). The first 3 weeks, he will receive both drugs and the fourth week he won't get the Vincristine. Dr. Kennedy said the Vincristine toxicity can build much faster than the Carbo which is why he will only receive it for 3 of the 4 treatments. And, Michael is already experiencing the effects of the Vincristine. He didn't have any reflexes on either side this week.
Also, Jeff & I thought it looked like Michael's hair was getting thinner but we weren't sure. We expected to see clumps of hair falling out and we didn't. (Sometimes in the oncology unit, you will see clumps of hair on the floor and it just breaks your heart.) We asked Dr. Kennedy what she thought and she said it is definitely thinning. But, she referred to a little girl that was in the unit that day and was at the end of her year of treatments. She said the little girl's hair had started thinning in the beginning but then her body adjusted and she never lost anymore of it. Let's hope that is what happens with Michael! I am not sure how he will take it if he realizes he is losing his hair.
Michael's Uncle Jeff and Aunt Dee (our friends and neighbors) gave Michael a St. Nicholas medal this week. St. Nicholas is the patron saint of children. He likes wearing the medal because we told him that it was to protect him and he likes that.
As we were leaving the unit this week, Michael saw the nurse that usually takes care of him in the treatment room. He asked if he could talk to her and I said sure. He went to the window and waved to her and she came right out to see him (and his socks). He told her that he had gotten his medicine and we were on our way home but that he would see her next week. Like I said at the start of this post, it is amazing how comfortable Michael is with all that is going on. Please keep him in your thought and prayers, JoAnne
Friday, February 15, 2008
We're half way through the first round...
Today was Michael's fifth treatment out of the ten that make up his first round. He only received Vincristine today so it should have been a quick trip but it wasn't. We arrived on schedule at 11 am but the pharmacy hadn't sent up Michael's treatment and it didn't arrive until 10 minutes to 2 pm. Considering we sat in a small exam room with no lunch for over 2 hours, Michael was wonderful. At one point, he was just singing at the top of his lungs. I could see into the hall and all of the nurses were coming down and standing outside the door listening to him. They thought he was just adorable.
Dr. Kennedy agreed that Michael's port was injured and not infected so he can stop taking the antibiotic they gave him in the ER. They had no problem drawing blood from the site so he didn't dislodge anything. She said that there was probably some blood that was forced out of the port when he hit it. She also said the blood could follow the catheter which is why it appeared as a red line.
Apparently, Michael developed an ear infection between our visit to Dr. Swan yesterday and today so he is on another antibiotic. He is also anemic and Dr. Kennedy wants to treat him with vitamins with iron and not iron supplements because they could upset his already sensitive stomach. She said anemia is common among chemo patients so she wasn't surprised. Michael is also starting to experience some side effects from the Vincristine. His reflexes on the right side of his body were greatly diminished. Again, this is expected and will go away when he is done with chemotherapy.
Next week is the Vincristine only again so hopefully Michael won't have any nausea for a couple of weeks. We went for a late lunch today to one of Michael's favorite restaurants, The Spaghetti Warehouse. He ate a whole bowl of spaghetti, a meatball, a small loaf of italian bread, a pint of milk and a cup of vanilla ice cream so he definitely felt good today.
When you are going through something like we are experiencing, you meet some wonderful people. Kohl's Department Store sells teddy bears and donates a portion of the money to children's charities. Somebody bought a huge bag of them and dropped them off at the oncology unit today. Every child that had a treatment today got one to keep. There was also a bin of hats that a group of women knitted for the kids and everybody got to pick one of those also. It's the little things like that that make it bearable for the kids. And you can't understand the positive impact these little acts of kindness have on the recipients until you experience it yourself. I know I didn't but my life is now forever changed by the people that have reached out to our little boy.
Dr. Kennedy agreed that Michael's port was injured and not infected so he can stop taking the antibiotic they gave him in the ER. They had no problem drawing blood from the site so he didn't dislodge anything. She said that there was probably some blood that was forced out of the port when he hit it. She also said the blood could follow the catheter which is why it appeared as a red line.
Apparently, Michael developed an ear infection between our visit to Dr. Swan yesterday and today so he is on another antibiotic. He is also anemic and Dr. Kennedy wants to treat him with vitamins with iron and not iron supplements because they could upset his already sensitive stomach. She said anemia is common among chemo patients so she wasn't surprised. Michael is also starting to experience some side effects from the Vincristine. His reflexes on the right side of his body were greatly diminished. Again, this is expected and will go away when he is done with chemotherapy.
Next week is the Vincristine only again so hopefully Michael won't have any nausea for a couple of weeks. We went for a late lunch today to one of Michael's favorite restaurants, The Spaghetti Warehouse. He ate a whole bowl of spaghetti, a meatball, a small loaf of italian bread, a pint of milk and a cup of vanilla ice cream so he definitely felt good today.
When you are going through something like we are experiencing, you meet some wonderful people. Kohl's Department Store sells teddy bears and donates a portion of the money to children's charities. Somebody bought a huge bag of them and dropped them off at the oncology unit today. Every child that had a treatment today got one to keep. There was also a bin of hats that a group of women knitted for the kids and everybody got to pick one of those also. It's the little things like that that make it bearable for the kids. And you can't understand the positive impact these little acts of kindness have on the recipients until you experience it yourself. I know I didn't but my life is now forever changed by the people that have reached out to our little boy.
Thursday, February 14, 2008
There's been a change of opinion...
When Michael woke up this morning, the line that was a bright red last night had turned more of a brownish red (kind of like a healing bruise). We began to suspect that it wasn't an infection of his port but an injury (actually Jeff thought it was a bruise last night). Michael had said last night that he fell and hit his port but we didn't think he hit it hard enough to cause the bloody line. Also, if someone hugs him a little too tight, he cries that it hurts his port. We didn't think he could injure it without some distress. The line also showed up within minutes of him saying he fell and we thought that a "bruise" would take longer to appear.
I talked to Dr. Swan this morning and she didn't think that was possible that it was anything but an infection and wanted to see it for herself. Michael and I went to her office this afternoon and she agrees it looks like a bruise. She said she wouldn't have believed it if she hadn't seen it herself! She also checked with the lab at the hospital while we were with her and there are no bacteria growing in his blood culture - which is a good sign.
We are anxious to go to Syracuse tomorrow to have the doctors and nurses there tell us what they think. And Dr. Swan wants us to keep giving Michael the antibiotic until Dr. Kennedy examines him tomorrow and gives us her opinion. They will also access the port to draw blood and that will reassure us that he didn't dislodge the catheter. Dr. Swan also wants us to talk to them about giving Michael iron supplements through his port since his bloodwork shows that he is anemic.
Michael is enjoying himself with his big brother tonight (as you can see in the picture above). Brian came over to "borrow" our garage so that he could install a remote car starter for a friend of his. I don't know if Michael is being a help or a hindrance but he is certainly enjoying himself.
I will post again tomorrow night after we get home from Syracuse and let everyone know what Dr. Kennedy says. Keep Michael in your thoughts and prayers, JoAnne
I talked to Dr. Swan this morning and she didn't think that was possible that it was anything but an infection and wanted to see it for herself. Michael and I went to her office this afternoon and she agrees it looks like a bruise. She said she wouldn't have believed it if she hadn't seen it herself! She also checked with the lab at the hospital while we were with her and there are no bacteria growing in his blood culture - which is a good sign.
We are anxious to go to Syracuse tomorrow to have the doctors and nurses there tell us what they think. And Dr. Swan wants us to keep giving Michael the antibiotic until Dr. Kennedy examines him tomorrow and gives us her opinion. They will also access the port to draw blood and that will reassure us that he didn't dislodge the catheter. Dr. Swan also wants us to talk to them about giving Michael iron supplements through his port since his bloodwork shows that he is anemic.
Michael is enjoying himself with his big brother tonight (as you can see in the picture above). Brian came over to "borrow" our garage so that he could install a remote car starter for a friend of his. I don't know if Michael is being a help or a hindrance but he is certainly enjoying himself.
I will post again tomorrow night after we get home from Syracuse and let everyone know what Dr. Kennedy says. Keep Michael in your thoughts and prayers, JoAnne
Remember when I said...
Remember when I said that one of the reasons we chose the internal port instead of the external one was because there was less of a chance of infection? Well, we found out tonight that less of a chance of infection doesn't mean no chance of infection. When Jeff took Michael's shirt off him tonight to put his pajamas on, he noticed a red "line" that followed the path of his port's catheter under the skin that wasn't there when I got him dressed this morning.
I immediately called the oncologist on call in Rochester and she confirmed what Jeff & I suspected - that it was a sign of an infection in his port. She told us to take him right to the emergency room to have blood cultures done and to get an antibiotic infusion. So off we went. (BTW- The first thing Michael wanted to know was where the play room was in this hospital.)
My next call was to Dr. Swan. She called the hospital for me to see if there was anybody there that had experience accessing the type of port Michael has - which there wasn't. That told us that if it became necessary to access the port for any reason, we would have to go at least to Syracuse. Then she told me what types of tests the ER doctor should do, which he did.
The blood tests showed that although Michael's counts were down slightly and he is a little anemic, they were good enough that he should be able to fight off this infection. And after examining him and conferring with the oncologist in Rochester, the ER doctor said that the infection isn't severe. For one thing, it's not a systemic infection or he would have a fever, which he doesn't. He was a little puzzled though because he thought the infection should be near the access site and it is up at the other end of the catheter. He said actually he has never seen anything like it (go figure!).
The doctor thinks with oral antibiotics and close monitoring, Michael should be fine. We sure hope so. We don't want him to have to have the port removed and an external one started. The ER nurse (who happens to be a good friend of ours) drew a line around the redness as it was tonight and said to watch and make sure it doesn't spread beyond that mark. If the infection seems to get larger, that could be a sign of cellulitis, which would not be good.
One thing that was very nice tonight was that the ER nurses were concerned about keeping Michael away from the other patients that could be contagious with all sorts of nasty germs. They immediately isolated him and put him in a private room off the beaten path. They even gave Michael a mask to wear. He brought it home with him so now when he plays "doctor" and gives us our treatments, he can look the part, too.
For now, it is another medicine and close monitoring. They will know more about the type of infection it is in a couple of days when the blood cultures come back. I will call all of the "team" tomorrow, Dr. Korones (Rochester), Dr. Kennedy (Syracuse) and Dr. Swan (Watertown) to update them and see if there is anything they would like to add to this latest development. And I am sure Dr. Swan will want to see him which Michael will love! We don't know yet if this will affect his ability to receive chemo this week. I guess the oncologists will have to make that call.
I am just glad that he should be able to go to school tomorrow (actually it is tomorrow already) so he won't miss the Valentine's Day party. He still hopes every day that they will have a sledding party again so that he can go. I will post when we know anything new. Say an extra prayer for Michael tonight, JoAnne.
I immediately called the oncologist on call in Rochester and she confirmed what Jeff & I suspected - that it was a sign of an infection in his port. She told us to take him right to the emergency room to have blood cultures done and to get an antibiotic infusion. So off we went. (BTW- The first thing Michael wanted to know was where the play room was in this hospital.)
My next call was to Dr. Swan. She called the hospital for me to see if there was anybody there that had experience accessing the type of port Michael has - which there wasn't. That told us that if it became necessary to access the port for any reason, we would have to go at least to Syracuse. Then she told me what types of tests the ER doctor should do, which he did.
The blood tests showed that although Michael's counts were down slightly and he is a little anemic, they were good enough that he should be able to fight off this infection. And after examining him and conferring with the oncologist in Rochester, the ER doctor said that the infection isn't severe. For one thing, it's not a systemic infection or he would have a fever, which he doesn't. He was a little puzzled though because he thought the infection should be near the access site and it is up at the other end of the catheter. He said actually he has never seen anything like it (go figure!).
The doctor thinks with oral antibiotics and close monitoring, Michael should be fine. We sure hope so. We don't want him to have to have the port removed and an external one started. The ER nurse (who happens to be a good friend of ours) drew a line around the redness as it was tonight and said to watch and make sure it doesn't spread beyond that mark. If the infection seems to get larger, that could be a sign of cellulitis, which would not be good.
One thing that was very nice tonight was that the ER nurses were concerned about keeping Michael away from the other patients that could be contagious with all sorts of nasty germs. They immediately isolated him and put him in a private room off the beaten path. They even gave Michael a mask to wear. He brought it home with him so now when he plays "doctor" and gives us our treatments, he can look the part, too.
For now, it is another medicine and close monitoring. They will know more about the type of infection it is in a couple of days when the blood cultures come back. I will call all of the "team" tomorrow, Dr. Korones (Rochester), Dr. Kennedy (Syracuse) and Dr. Swan (Watertown) to update them and see if there is anything they would like to add to this latest development. And I am sure Dr. Swan will want to see him which Michael will love! We don't know yet if this will affect his ability to receive chemo this week. I guess the oncologists will have to make that call.
I am just glad that he should be able to go to school tomorrow (actually it is tomorrow already) so he won't miss the Valentine's Day party. He still hopes every day that they will have a sledding party again so that he can go. I will post when we know anything new. Say an extra prayer for Michael tonight, JoAnne.
Monday, February 11, 2008
This week is just like last week (so far)...
Michael had a great day Saturday but was sick to his stomach both yesterday morning and this morning (just like last week). Unfortunately, Dr. Kennedy said that that will probably be the pattern every week. The only difference this week was a low grade fever all day yesterday that broke mid-morning today. He also ate very little yesterday and just wanted to cuddle on the couch all day. But I'm not complaining about that part at all ! I talked to the oncology unit in Syracuse and they said not to worry unless his temperature went above 101- which thankfully it didn't.
The picture to the right is Michael and his stuffed kitty, Charlie, in a new chair that we ordered for his room that arrived today. Now we have a comfy place to sit each night and read our books together. We can also sit and cuddle quietly with Michael when he isn't feeling the best. As always, please keep Michael in your thoughts & prayers, JoAnne
The picture to the right is Michael and his stuffed kitty, Charlie, in a new chair that we ordered for his room that arrived today. Now we have a comfy place to sit each night and read our books together. We can also sit and cuddle quietly with Michael when he isn't feeling the best. As always, please keep Michael in your thoughts & prayers, JoAnne
Saturday, February 9, 2008
Day 28 of Michael's treatment plan...
As scheduled, we went to Syracuse for Michael's fourth treatment yesterday. First, we saw Dr. Kennedy, who Jeff and I really like. She's very caring and actively involved with us in Michael's care. She definitely stays on top of things. (She reminds me of Michael's pediatrician, Dr. Swan, who we love so much.) I have to say, she gave us a little scare though.
She asked us if Dr. Korones had mentioned an infection that chemo children are very vulnerable to (which he hadn't). She went on to tell us it is a terrible infection that is very difficult to treat since the child's immune system is already compromised from the chemo. She said that the bacteria usually settle in the lungs and cause severe pneumonia and that the children usually wind up in ICU on a ventilator. For a minute we thought she saw some sign of the infection in Michael !! But what she was telling us is that children on chemo should be on antibiotics for the entire time. And she noticed Dr. Korones had made notes about it in Michael's records but hadn't given us a prescription. Whew !! So, now Michael has to take an antibiotic twice a day, 2 days a week.
Michael had the same great nurses as last week and they remembered his socks. Michael's Aunt Denise and cousin James live in Alaska and sent him a couple of boxes of goodies from there. Included were a whole bunch of socks that say "Alaska" and are bright colors with pictures of things such as moose and bears. Michael loves wearing them and has enough to wear a different pair every day. The nurses told him that they can't wait until next week to see the next pair.
Michael was out of sorts yesterday. He was disappointed that he had to miss a sledding party at school to go for his treatment. He was also really apprehensive and cried when they were accessing his port for some reason but once they were done, he was a little better. Dr. Kennedy looked at his blood and thought his counts looked awfully low so we had to wait for the official results from the lab to see if he could receive his chemo. Everything came back okay and they we able to start the treatment.
Michael wanted to go to the waiting room and play with the toys instead of just sitting in his little cubicle (I can't say that I blame him) so that is what we did. He had a lot of fun with a big bucket of Legos. But, after he received his Benadryl (which makes him sleepy) we coaxed him back to his room and we took the Legos with us.
We put in a new Disney movie Michael received called 'Snow Buddies'. It was just released this week and a good friend of ours, Kathy, bought it for Michael to watch during his treatment. Kathy is one of the most caring and considerate people you could ever hope to meet and we are fortunate to have her in our life. She volunteers at her local library and has story hour for the kids once a month. She always brings Michael whatever craft she has for the kids and he loves doing them.
When the Benadryl started working, Michael got very tired but fought going to sleep so he got a little difficult to deal with and a little whiny. Also, the unit officially closes at 4:30 pm so the Child Life Specialists came and took the Legos back and he didn't like that. It was after 5 pm when we left the hospital and Michael said he was hungry so we stopped and had some dinner. Then he feel asleep in the car and we were able to just put him to bed when we got home.
So far Michael is feeling good. (Jeff & I thought he got awfully pale during his treatment this week.) He is eating scrambled eggs for breakfast and his appetite seems better than last week. For the next 2 weeks, Michael only has to receive the Vincristine. That is the drug that is pushed not dripped so it will only take a couple of minutes. It also doesn't cause the nausea so he won't have to have the 4 anti-nausea drugs. It is the drug that is dependent on good blood counts though so hopefully they won't go down any more this week. I will keep everyone posted. Keep Michael in your thoughts and prayers, JoAnne.
She asked us if Dr. Korones had mentioned an infection that chemo children are very vulnerable to (which he hadn't). She went on to tell us it is a terrible infection that is very difficult to treat since the child's immune system is already compromised from the chemo. She said that the bacteria usually settle in the lungs and cause severe pneumonia and that the children usually wind up in ICU on a ventilator. For a minute we thought she saw some sign of the infection in Michael !! But what she was telling us is that children on chemo should be on antibiotics for the entire time. And she noticed Dr. Korones had made notes about it in Michael's records but hadn't given us a prescription. Whew !! So, now Michael has to take an antibiotic twice a day, 2 days a week.
Michael had the same great nurses as last week and they remembered his socks. Michael's Aunt Denise and cousin James live in Alaska and sent him a couple of boxes of goodies from there. Included were a whole bunch of socks that say "Alaska" and are bright colors with pictures of things such as moose and bears. Michael loves wearing them and has enough to wear a different pair every day. The nurses told him that they can't wait until next week to see the next pair.
Michael was out of sorts yesterday. He was disappointed that he had to miss a sledding party at school to go for his treatment. He was also really apprehensive and cried when they were accessing his port for some reason but once they were done, he was a little better. Dr. Kennedy looked at his blood and thought his counts looked awfully low so we had to wait for the official results from the lab to see if he could receive his chemo. Everything came back okay and they we able to start the treatment.
Michael wanted to go to the waiting room and play with the toys instead of just sitting in his little cubicle (I can't say that I blame him) so that is what we did. He had a lot of fun with a big bucket of Legos. But, after he received his Benadryl (which makes him sleepy) we coaxed him back to his room and we took the Legos with us.
We put in a new Disney movie Michael received called 'Snow Buddies'. It was just released this week and a good friend of ours, Kathy, bought it for Michael to watch during his treatment. Kathy is one of the most caring and considerate people you could ever hope to meet and we are fortunate to have her in our life. She volunteers at her local library and has story hour for the kids once a month. She always brings Michael whatever craft she has for the kids and he loves doing them.
When the Benadryl started working, Michael got very tired but fought going to sleep so he got a little difficult to deal with and a little whiny. Also, the unit officially closes at 4:30 pm so the Child Life Specialists came and took the Legos back and he didn't like that. It was after 5 pm when we left the hospital and Michael said he was hungry so we stopped and had some dinner. Then he feel asleep in the car and we were able to just put him to bed when we got home.
So far Michael is feeling good. (Jeff & I thought he got awfully pale during his treatment this week.) He is eating scrambled eggs for breakfast and his appetite seems better than last week. For the next 2 weeks, Michael only has to receive the Vincristine. That is the drug that is pushed not dripped so it will only take a couple of minutes. It also doesn't cause the nausea so he won't have to have the 4 anti-nausea drugs. It is the drug that is dependent on good blood counts though so hopefully they won't go down any more this week. I will keep everyone posted. Keep Michael in your thoughts and prayers, JoAnne.
Wednesday, February 6, 2008
It's report card time...
Michael brought home his second report card yesterday and his Dad & I are very proud of him. He made improvements in many categories and maintained the ones that he had already done well in. In addition, his teacher wrote the following wonderful comment:
"Michael seems enthusiastic about learning and he's widened his circle of friends. He's very caring and protective of those closest to him. It warms the heart to watch that."
We're glad that there doesn't seem to be any of the learning or social problems we were so worried about just a few months ago! In fact, Michael & I have started working in some learn to read books that Jenny picked up for us. Life for us may not be what many 4 year olds and their families have, but then Michael has experienced extraordinary things for his young age.
Before bed last night, Michael brought out his play medical kit. He told me it was time for my "treatment". He scrubbed my tummy where my "port" was until it was "squeaky clean". Then he used his play syringe to draw some of my blood. After he checked my blood, he proclaimed that it looked good enough for me to receive my treatment. He looked at my "chart" to see what the doctor had ordered and then he gave me my medicine with his syringe. He told me it wouldn't hurt and I could take a nap while I received my medicine if I wanted. After I had gotten all my meds, he removed the needle and put a band-aid over my boo-boo.
So, although Michael knows about things that children shouldn't have to know about. And although he has a vocabulary that would rival a first year medical student, he is still just a little boy at heart. And he amazes us more and more each day. As always, please keep Michael in your thoughts and prayers, JoAnne
"Michael seems enthusiastic about learning and he's widened his circle of friends. He's very caring and protective of those closest to him. It warms the heart to watch that."
We're glad that there doesn't seem to be any of the learning or social problems we were so worried about just a few months ago! In fact, Michael & I have started working in some learn to read books that Jenny picked up for us. Life for us may not be what many 4 year olds and their families have, but then Michael has experienced extraordinary things for his young age.
Before bed last night, Michael brought out his play medical kit. He told me it was time for my "treatment". He scrubbed my tummy where my "port" was until it was "squeaky clean". Then he used his play syringe to draw some of my blood. After he checked my blood, he proclaimed that it looked good enough for me to receive my treatment. He looked at my "chart" to see what the doctor had ordered and then he gave me my medicine with his syringe. He told me it wouldn't hurt and I could take a nap while I received my medicine if I wanted. After I had gotten all my meds, he removed the needle and put a band-aid over my boo-boo.
So, although Michael knows about things that children shouldn't have to know about. And although he has a vocabulary that would rival a first year medical student, he is still just a little boy at heart. And he amazes us more and more each day. As always, please keep Michael in your thoughts and prayers, JoAnne
Tuesday, February 5, 2008
And now the rest of the story...
I mentioned in my last post we were at a very nice hotel but I didn't give many details. It was a beautiful, brand new hotel and there were only a handful of guests and we think we know why. The hotel was in the middle of nowhere. It was in a small town on Wenchell Road. In this town there is also a Wenchell Drive (which we found first) and Wenchell Lane (which we found second). So after 40 frustrating minutes of driving around, we finally came upon it in the middle of some farmland. There was NOTHING around it (though we did see plans for a theme park being built next door.) But, it was a very nice hotel and it had a pool so we were happy.
Almost immediately after I posted Friday night, things took an unexpected turn. Michael had fallen asleep and Jeff & I were settled in watching TV and having a glass of wine when *poof* - the power went out. We looked out our window to see if it was just the hotel or if everyone around us was without power. There weren't any buildings across the street so we couldn't tell. So I went down to the end of the hall but there was nothing outside those windows either. The other end of the hall was the same way. Now it hits us just how isolated we are.
I met some other guests in the hall and they said it was just our hotel and that the young girl at the front desk didn't know what to do so she had called the manager, who was on her way to the hotel. So we watched out the windows for the next hour waiting for the manager to arrive when we see a car slide off the snow covered road leading to the hotel. We figure this HAS to be the manager. The poor woman gets out of her car and makes the trek down the road, up the driveway and across the parking lot in the cold and blowing snow.
At this point, Jeff turns to me and says "I think I saw a horror movie once that went like this." We both got laughing and made a pact not to open the door to anybody in a hockey mask carrying a chain saw. Then we nervously double checked the lock on the door and waited for the power to come back on. After about 2 hours it did come back on and we enjoyed the rest of our stay. Michael went swimming the next morning after breakfast and then we headed home. We will go to MOST on one of our next trips.
Michael gets anti-nausea medicine for 24 hours after his treatments so he was fine on Saturday. Unfortunately, Sunday wasn't as good of a day. He woke up nauseated and vomiting so we gave him his medicine all day Sunday. Then the same thing happened yesterday and he wasn't up to going to school. He hasn't had much of an appetite all week either.
I'm relieved to say that today is a better day though. He ate breakfast and is now at Robin's house. I will talk to the nurses this Friday and see what they think. The only thing I noticed last Friday was that Syracuse doesn't give as many fluids between the medicines to flush Michael's system. I will ask if that could make a difference. Or perhaps it will just be like this with some good weeks and some bad. I guess time will tell. Keep Michael in your thoughts and prayers, JoAnne
Almost immediately after I posted Friday night, things took an unexpected turn. Michael had fallen asleep and Jeff & I were settled in watching TV and having a glass of wine when *poof* - the power went out. We looked out our window to see if it was just the hotel or if everyone around us was without power. There weren't any buildings across the street so we couldn't tell. So I went down to the end of the hall but there was nothing outside those windows either. The other end of the hall was the same way. Now it hits us just how isolated we are.
I met some other guests in the hall and they said it was just our hotel and that the young girl at the front desk didn't know what to do so she had called the manager, who was on her way to the hotel. So we watched out the windows for the next hour waiting for the manager to arrive when we see a car slide off the snow covered road leading to the hotel. We figure this HAS to be the manager. The poor woman gets out of her car and makes the trek down the road, up the driveway and across the parking lot in the cold and blowing snow.
At this point, Jeff turns to me and says "I think I saw a horror movie once that went like this." We both got laughing and made a pact not to open the door to anybody in a hockey mask carrying a chain saw. Then we nervously double checked the lock on the door and waited for the power to come back on. After about 2 hours it did come back on and we enjoyed the rest of our stay. Michael went swimming the next morning after breakfast and then we headed home. We will go to MOST on one of our next trips.
Michael gets anti-nausea medicine for 24 hours after his treatments so he was fine on Saturday. Unfortunately, Sunday wasn't as good of a day. He woke up nauseated and vomiting so we gave him his medicine all day Sunday. Then the same thing happened yesterday and he wasn't up to going to school. He hasn't had much of an appetite all week either.
I'm relieved to say that today is a better day though. He ate breakfast and is now at Robin's house. I will talk to the nurses this Friday and see what they think. The only thing I noticed last Friday was that Syracuse doesn't give as many fluids between the medicines to flush Michael's system. I will ask if that could make a difference. Or perhaps it will just be like this with some good weeks and some bad. I guess time will tell. Keep Michael in your thoughts and prayers, JoAnne
Friday, February 1, 2008
We're snug as a bug...
Michael had his first treatment in Syracuse today. It went well. And so far - no side effects. We are settled in at a very nice Syracuse hotel tonight (and we are warm and very comfy). There was a bad winter storm both at home and here today so we decided to make our trip a mini-vacation and wait out the storm since we drove through it all to get here today - heavy snow, sleet, freezing rain and finally plain rain.
Michael has been swimming already and we just came back from a nice dinner. The hotel has a breakfast buffet in the morning (and Michael loves breakfast buffets). Then, weather permitting, we are going to go to the Museum of Science and Technology (MOST) tomorrow before we head home. They have a new exhibit on caves that we would like to see.
As far as Michael's treatment today, there are some things we really like about Syracuse and some things we prefer in Rochester.
The treatment area in Rochester is a nicer setup. It is a large toy and craft room. Here they have cubicles with a recliner and a TV with VCR & DVD player. Michael was upset there weren't a lot of toys to play with like Rochester but watched a movie and then took a nap. There are toys out in the public waiting room but it would be hard (but not impossible) to play out there and receive his treatment.
We liked the staff's routine here though. The nurses sit right in the room and give the next medicine as soon as one is done. In Rochester the nurses don't stay in the play room and just come and check once in a while to see if he is ready for the next drug. Since Michael gets a total of 6 different medicines, the quicker they get the next one hung, the quicker we can leave.
Keep your fingers crossed that Michael has another great week. I will keep everybody posted. JoAnne
Michael has been swimming already and we just came back from a nice dinner. The hotel has a breakfast buffet in the morning (and Michael loves breakfast buffets). Then, weather permitting, we are going to go to the Museum of Science and Technology (MOST) tomorrow before we head home. They have a new exhibit on caves that we would like to see.
As far as Michael's treatment today, there are some things we really like about Syracuse and some things we prefer in Rochester.
The treatment area in Rochester is a nicer setup. It is a large toy and craft room. Here they have cubicles with a recliner and a TV with VCR & DVD player. Michael was upset there weren't a lot of toys to play with like Rochester but watched a movie and then took a nap. There are toys out in the public waiting room but it would be hard (but not impossible) to play out there and receive his treatment.
We liked the staff's routine here though. The nurses sit right in the room and give the next medicine as soon as one is done. In Rochester the nurses don't stay in the play room and just come and check once in a while to see if he is ready for the next drug. Since Michael gets a total of 6 different medicines, the quicker they get the next one hung, the quicker we can leave.
Keep your fingers crossed that Michael has another great week. I will keep everybody posted. JoAnne
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