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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.
Saturday, February 9, 2008
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
Monday, January 28, 2008
Meet Michael's new friend...
When Michael came home after his surgery last week, his big brother came by to visit him and he brought with him a new friend for our little buddy - a giant Baloo from the Jungle Book that is bigger than Michael! Michael was just awe struck when Brian walked in with it. It really made him smile and put a twinkle in his eye!
I am happy to report that Michael is still symptom free this week. It looks like they found the right regimen to keep Michael comfortable. I spoke with our nurse practitioner in Rochester today and she said she would make sure Syracuse has the details on what to give him when we start there this week. I will let everyone know how it goes. Keep Michael in your thoughts and prayers, JoAnne.
P.S. If you notice in the picture, Michael has a new haircut. His hair had finally grown back in enough after his surgery to be cut. Yeah!
Friday, January 25, 2008
The end of treatment number two...
Well, we just made it home from out latest trek to Rochester. Michael's blood tests and treatment took 6 hours on top of a stressful ride down and back. We hit heavy snow on the way down and a lot of blowing and drifting on the way home. It was a long day but everything went very well. And so far Michael isn't feeling any side effects.
They added 2 new anti-nausea medicines to the one he was already taking, so hopefully this week will be better than last week. They also "dripped" his Vincristine instead of "pushing" it so hopefully that will help with the terrible jaw and throat pain. Apparently, chemo drugs are easier to handle when they are administered slowly. The nurses had no problem accessing Michael's port and it worked perfectly. They couldn't believe that Michael wasn't apprehensive about them poking him with a pretty scary looking needle and didn't even flinch.
Michael enjoyed playing with all the toys they had in the treatment room. He also sat and made a Valentine decoration with a couple of other kids that were there for treatment. Next, he made me my own hospital bracelet that said "Mom" so I could be like him. Then he sat with me to watch a movie and promptly fell asleep. (They had given him some medicine to make him sleepy since they believe sleeping also helps the body adjust to chemo.) I did learn today that I need to pack a Treatment Day Bag with snacks, a favorite blanket and a few other misc items. It never fails to amaze Jeff & I what a great little boy we have.
As I am typing this, Michael and Daddy are pitching a tent in the living room to have a sleepover they have been planning all week. But, considering Michael took a 2 hour nap at the hospital and slept for the 3+ hour ride home, I am not sure how much sleeping he will be doing! I hope he does though since Jeff worked last night and we left as soon as he got home this morning. So, he is going on 36 sleepless hours with only a couple of cat naps.
Keep your fingers crossed that the nurses' attempts to make Michael more comfortable work. I will post in a couple of days and let everyone know how he is doing. Keep Michael in your thoughts and prayers, JoAnne
They added 2 new anti-nausea medicines to the one he was already taking, so hopefully this week will be better than last week. They also "dripped" his Vincristine instead of "pushing" it so hopefully that will help with the terrible jaw and throat pain. Apparently, chemo drugs are easier to handle when they are administered slowly. The nurses had no problem accessing Michael's port and it worked perfectly. They couldn't believe that Michael wasn't apprehensive about them poking him with a pretty scary looking needle and didn't even flinch.
Michael enjoyed playing with all the toys they had in the treatment room. He also sat and made a Valentine decoration with a couple of other kids that were there for treatment. Next, he made me my own hospital bracelet that said "Mom" so I could be like him. Then he sat with me to watch a movie and promptly fell asleep. (They had given him some medicine to make him sleepy since they believe sleeping also helps the body adjust to chemo.) I did learn today that I need to pack a Treatment Day Bag with snacks, a favorite blanket and a few other misc items. It never fails to amaze Jeff & I what a great little boy we have.
As I am typing this, Michael and Daddy are pitching a tent in the living room to have a sleepover they have been planning all week. But, considering Michael took a 2 hour nap at the hospital and slept for the 3+ hour ride home, I am not sure how much sleeping he will be doing! I hope he does though since Jeff worked last night and we left as soon as he got home this morning. So, he is going on 36 sleepless hours with only a couple of cat naps.
Keep your fingers crossed that the nurses' attempts to make Michael more comfortable work. I will post in a couple of days and let everyone know how he is doing. Keep Michael in your thoughts and prayers, JoAnne
Wednesday, January 23, 2008
Today was a great day...
Michael is feeling much better today and even went to daycare and school. Today is the first day since Friday that he has had any appetite at all. The nausea and vomiting stopped yesterday morning but he still had terrible jaw pain so he still wasn't able to eat much until lunchtime today. It's encouraging that he is back to his old self and we hope that maybe it means his body is adjusting and that the next treatment won't be as rough on him. His nurse practitioner said they are going to add a second anti-nausea medicine to Micheal's treatment this week to try to help him. We have to be in Rochester this Friday at 11 am for his second treatment. I will post to let everyone know how he does. Please keep Michael in your thoughts and prayers, JoAnne.
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