Friday, December 28, 2007

We had a very nice Christmas...

Christmas 2007 turned out to be a very nice, but quiet, holiday. Jenny and Ralph were home for a couple of days. Jenny made our big dinner (which we had on Christmas Eve since Jeff had to work Christmas Day). Everything was delicious. My Dad and Jeff's Mom came for dinner and Jeff's Dad drove through some pretty heavy snow from Rochester to spend the day with us. Brian had to work Christmas Eve but had breakfast with Dad, Jenny, Ralph Michael & I Christmas morning.

Michael had a wonderful Christmas. He just loved opening presents! When asked what his favorite present is, he says "all of them". He got some Lego's that make construction trucks and they seem to be his favorite so far. His Thomas the Train stuff seems to be a close second.

Big brother Brian has finally flown from the nest. Today he moved into a 4 bedroom house with 3 of his friends. He seems really happy and ironically, I think I have talked to him more since he moved out then when he lived at home!!

The question of looking into St. Jude's Hospital for Michael keeps coming up from family and friends so I thought I would comment on it here. I actually did research it right after Michael was diagnosed and he isn't eligible to go there at this time (which is a good thing). In order to be accepted to St. Jude's: 1.) you have to have had already received treatment that didn't work and 2.) they have to be doing a study at the time of the type of tumor that you have. While my research shows that they were doing trials on tumors with Michael's traits, he hasn't had any failed treatment regimens. So, hopefully he will never be eligible to go to St. Jude's!! It is a little comforting to know though that a place like that exists (just in case). They definitely work miracles.

If you had signed up for email updates when we first started this site and have stopped receiving updates, you need to sign up again. Apparently the feed we were using before was bought out by another company and is no longer working. I will post again after we go to Rochester next week. As always, in the meantime, please keep Michael in your thoughts and prayers. JoAnne

Wednesday, December 19, 2007

We've received some bad news....

Michael, Jeff & I went to Rochester on November 28th for Michael's 3 month MRI. We went down the night before and stayed overnight at a hotel. We had a nice dinner in Oswego on the way down and the hotel had an indoor pool. We did our best to make it a mini-vacation and a positive experience for Michael and it apparently it worked. He wants to know when we can go back!

He wasn't apprehensive at all when we went to the hospital for his tests. (Even though he made sure everyone he came in contact with knew he was only there for a couple of hours and he was going home that night.) Dr. Korones came to see us while we were in recovery and was cautiously optimistic that the tumor was unchanged. Unfortunately, he was mistaken.

Dr. Korones called tonight and after conferring with Dr. Pilcher and the radiologist, they have decided that Michael's tumor has in fact grown. Based on that information, they are recommending we start chemotherapy after the holidays. Though we don't have the fine details (I have found there is only so much your mind can process at one time) we do know some things.

Michael will receive treatments once a week on an outpatient basis. Dr. Korones has some colleagues in Syracuse that could administer the chemo for us so we don't have to drive to Rochester every week. We don't know how many weeks of treatment he will need yet. Michael will have to have a semi-permanent port put in his chest to both receive his treatments and for a site to draw blood. This is a surgical procedure done under anesthesia.

We don't know about any side effects or how Michael will feel yet. We also don't know the specific types of drugs they will use. Jeff wasn't home when Dr. Korones called and I thought we should hear those details together (plus as I said, there is only so much you can handle at one time). We will be going to Rochester to see Dr. Korones on January 3rd and will get all the details then.

One thing Dr. Korones is adamant about is that he still believes Michael is curable and treatable. He also still thinks Michael is in the majority of kids that beat these things. He said he has seen and heard of kids with worse prognosises than Michael that are living full, happy lives. He understands that we are having a hard time believing that, but hopes we will be convinced when Michael graduates from high school. I've never wanted anyone to be right about something so much in my entire life.

This whole thing has seems to be more complicated then we originally were told so we have decided to get a second (and possibly third) opinion. I have spoken to Children's Hospital of Boston and they have agreed to do a consult with us. They are going to look over all of Michael's records (MRI's, pathology reports, surgical notes, oncology notes, etc) and then their pediatric brain tumor "team" will give us a call. At that time, they will tell us if we are on the right track in Rochester or whether they would like us to travel to Boston to discuss other treatment options. Children's Hospital of Boston is tied to Harvard Medical School and has one of the best and largest Pediatric Brain Tumor programs on the east coast. We hope to hear back from them in the next week or two.

After Boston is done with Michael's records, we may send them to John Hopkin's University in Baltimore. They have the premier pathologist in the country when it comes diagnosing types of brain tumors in children. I haven't talked to them yet, but it is my understanding they also due initial consults over the phone.

In the meantime Michael is doing very well. Today we had a reminder that even though Michael has healed physically from his surgery, he still remembers what has happened. He had a dentist appointment and although he has never fussed about having his teeth cleaned, today he did. He refused to sit in the chair and told the dental hygienist it was because he doesn't want anybody to hurt him anymore.

He is really warming up to school. (And Dr. Korones said he will be able to stay in school during chemotherapy.) He has even made a couple of new friends. We got his first report card a couple of weeks ago and he did excellent on everything but coloring (he never did like to color). I went over his report card with him and told him what Mrs. Adams had said. He must have really listened because since then he has really tried and his coloring has improved 100%! One thing Michael does LOVE to do is sing. Every night on the bus he serenades the bus driver, Debbie, and the kids all the way home. And I think Jeff & I have Jingle Bells burned into our brain. We started teaching him other songs just to keep our sanity!

For now we are just going to enjoy the holidays with our family. Jenny & Ralph will be home Sunday morning and will leave Christmas afternoon. Jeff's Dad will be coming for a couple of days also. Jeff has to work Christmas Day but has Christmas Eve off, so we are doing our dinner then (Jenny & Ralph are cooking for everybody). Then, Jeff's sister Debbie will be home from Kentucky on the 27th and will be staying through New Year's.

Michael is so excited about Christmas (as I am sure you can imagine). He is still adding to his Christmas list even though I am done with my shopping. But, I'm sure he won't be disappointed on Christmas morning. He has bought presents for everybody and even has them all wrapped. He had his school Christmas party today and was very excited when he got home. This Friday night we plan on going on our annual trip to the Christmas lights display at Upper Canada Village. (The picture to the right is the church in the village lit up for the annual festival.)

Michael has started going to a new babysitter, Robin, one or two mornings a week and she is having a party for the kids tomorrow after school. He is excited because he will get to walk to her house after school with the "big" kids. It was quite an adjustment (and a little rough) for Michael to start at a new daycare but there was just no way we could work him going to a babysitter outside of his school district without me leaving work a couple of times a day to transport him to and from school. The bus picks Michael up at Robins house on the days he goes there and then Jeff & I make sure one of us is home to get him off the bus at 3:45.

He still talks about his old babysitter, Patti, and we hope to make plans so Michael can see her over Christmas vacation. He has a Get Well poster on his bedroom wall that Patti and the kids made for him while he was in the hospital. It has all their names and handprints in paint and pictures of Patti's dog, Jasmine and her 2 cats, Indie and Charlie.

I know this is a long post but it has been a while since I updated. I guess I was waiting for news to post and didn't think it would take this long. As always, I am asking everybody to keep Michael in their prayers and I will keep posting as we get more information. We hope everyone has a Merry Christmas, JoAnne

Monday, November 12, 2007

We went to see Dr. Korones...

Well, we were finally able to schedule an appointment and see Dr. Korones (Michael's oncologist) in person. We made the trek to Rochester on November 1st. Michael was excellent on the way down but we hadn't told him he was going with us to see Dr. Korones until we got to the hospital (he thought he was going to stay with Grandpa). He got very upset when he saw the hospital and begged us not to take him in there. But, by the time we found a spot in the parking garage, we had him laughing through his tears. We were actually early, so we went to the cafeteria to grab a snack and relax before making our way to the Pediatric Oncology Unit.

Our meeting with Dr. Korones was a bag of mixed emotions. He immediately noticed Michael's new glasses and asked us about the eye exam we had done. We explained to him that the opthomologist had stated that she didn't beleive Michael's vision problems were related to the tumor. We told him that we found that hard to beleive and asked him what he thought. He did some simple tests on Michael to check his peripheral vision. Afterwards, he said that he agreed with that assessment since there would have been deficits in Michael's peripheral vision if there was damage to the optic nerve from the tumor.

We then talked to Dr. Korones about some concerns we had like tremors Michael was experiencing in his sleep and the large amount of hair growing on Michael's legs. He thought the tremors could be because Michael's Tegretol (anti-seizure medicine) levels weren't where they were suppposed to be. He also told us because of the location of Michael's tumor (near the pituitary gland which controls hormones) it was possible that he was experiencing precoscious puberty (or the early onset of puberty) which would cause him to become hairy. Both of those conditions could be checked with simple blood tests which we had done before we left the hospital. We are happy to say, we spoke to Dr. Korones today and all of Michael's blood tests came back within normal ranges. Yeah!!

Now for the disconcerting part of the visit. Dr. Korones showed us the MRI done the day after Michael's surgery side by side with the original MRI. There is a lot more tumor left then we were originally led to beleive. (In fact the original tumor is much larger than we originally thought.) The portion remaining is about the size of a quarter. Dr. Korones then told us we had 2 options:

Option 1.) We could start chemotherapy now. He stated he has collegues in Syracuse (much closer to home) that he would be comfortable with administering the treatments. That would involve going to the hospital once a week to receive the treatments. The doctors would put in a "permanent" port under Michael's skin to give him the medications and draw blood to test.

Option 2.) We could watch the tumor to see what it does. He stated that the majority of these tumors never grow and no further treatment may be necessary. His only concern is that if it does start to grow, Michael's optic nerve is in danger of being damaged. But based on the pathology report, it should grow slow enough that they could treat it before it causes damage.

Jeff & I chose Option 2 - Watch and wait (as nervewracking as that is). Dr. Pilcher had said that he didn't need to see Michael until the end of December (4 months after surgery) but Dr. Korones said that Michael should have his next MRI 3 months after surgery or the end of November. They are trying to schedule everything for November 29th. Dr. Korones did stress again that he still believes Michael's tumor is "treatable and curable". Jeff & I have already decided that next time we see Dr. Korones, we are going to ask him to explain exactly why he feels that way.

So until then, we are taking life one day at a time. Physically Michael is doing great. His hair has grown enough that he almost needs a haircut!! When you see him, you would never know that he is fighting a brain tumor and that he had surgery a couple of months ago. He is full of energy and constantly on the move. He is inquisitive and is learning new things everyday. He is still our little chatterbox.

Emotionally, we have some concerns though. He is still going to school but we are worried he is not interacting with the other kids. He doesn't know any of the names of the kids in his class and never has any stories about playing with them. We went to pick him up early one afternoon and the class was on the playground. Michael was sitting on the edge of the playground just swinging his feet back and forth, looking pretty lonely. We knew he couldnt' play on the equipment but we were hoping maybe he would play with the kids, just not on the equipment. It was pretty heartbreaking to see.

Michael has also become a terrible homebody. He puts up a fuss whenever we talk about going anywhere. He tells us he is going to miss Chance (our dog) and Midnight (our rabbit) and he just wants to stay home. This weekend we finally made our annual trip to Pixley Falls (something Jeff & I have done every fall since we started dating). Michael complained on and off all day that his stomach hurt and asked when we were going home. I think since his hospital stays, the only place he feels safe is home and we are at a loss how to make him feel safe again. With the crazy shifts Jeff & I were working to keep Michael out of daycare, this was the first weekend Jeff had off in a long time so we haven't had the chance to do many things as a family since the surgery. Hopefully that will change now and with time Michael will enjoy life again.

Next Sunday, we are driving to Binghamton to see the Playhouse Disney Live show. It will have all of Michael's favorite characters in it. He will see Pooh, Tigger and Darby from "My Friends Tigger and Pooh". Manny and the tools from "Handy Manny" and Leo, Annie, Quincy and June from "Little Einstiens".

In the meantime, our little buddy is just counting the days until Christmas! The other night he saw a star in the sky and Daddy told him to make a wish. Michael wished the next day would be Christmas. In fact he has not one but TWO wish lists on the fridge that we make changes to almost daily. He has the entire family excited for Christmas as we know Michael is going to be a lot of fun this year. But before Christmas, we are praying for good news on the 29th. We will keep everybody posted. Please keep Michael in your thoughts and prayers. JoAnne

Friday, October 12, 2007

Dr. Korones called...

Michael's oncologist, Dr. Korones, called earlier this evening. There had been some miscommunication between him and Dr. Pilcher's office. Dr. Korones had been told that they were able to remove all of Michael's tumor during the surgery and based on that information, he had decided to hold off on chemo and radiation. Based on a conversation he and I had several weeks ago (during which I told him that was a contradiction to what we were told by Dr. Pilcher), he spoke again with Dr. Pilcher and Dr. Pilcher verified that he was unable to get all of Michael's tumor. (BTW - this is now one of those "panic days" I spoke about earlier this week.)

Dr. Korones is now waiting for Dr. Pilcher to review Michael's records to let him know if Michael is in any danger if the tumor starts growing again. If there is any chance of danger, they will start more aggressive treatments now (probably chemo since radiation can devastate a 4 year old's brain). If not, he is comfortable waiting until December to see what the remaining tumor actually does. (Michael's next MRI is tentatively scheduled for December 20th.) He said this evening that sometimes this type of tumor not only stops growing but actually shrinks. (Let's hope that is the case with Michael.) He reiterated that he still believes that Michael has an excellent chance of surviving this ordeal.

Dr. Korones & I agreed that it might be worth a trip to Rochester before December to talk face to face and to go over Michael's MRI's and pathology reports in person. Someone from his office will call next week with an appointment for the following week.

Also, the other day I signed up to participate in a program called CompassionNet. It is somehow associated with our health insurance but isn't really a part of our insurance. Our case manager, Laurie, came to the house the other day and we talked for quite a while. They provide emotional support, financial assistance with travel expenses, education and can act as liaisons on our behalf. Basically, they will help with ANYTHING we need. When she left, she spoke to a nurse practitioner in her office named Susan. It was Susan that actually called Dr. Korones to remind him we were waiting for some answers which is why he called tonight.

Laurie & I also discussed our option of getting a second opinion. If Jeff & I decide to go that route, CompassionNet will help us set it up and help cover the costs of traveling. She & I discussed the best choices in Michael's case and agree that Boston General would be an excellent choice. Jeff & I just have to make a decision.

For those that don't live close by, the tank top Michael had on earlier this week has given way to long sleeves and jackets. When Michael got off the bus this afternoon, he complained that the cold wind was hurting his head. It looks like his incision is going to be very sensitive to the cold (at least for a while). As much as Michael hates hats, I think he is going to have to get used to wearing one. We will keep everybody posted on any new developments. In the meantime, keep Michael in your thoughts and prayers. JoAnne

Monday, October 8, 2007

Michael's New Glasses...

We just got back from picking up Michael's new glasses and he wanted to share them with everyone. Dosen't he look handsome (and grown-up)? Michael is very suprised at how much different everything looks and Mom is very surprised at how strong his glasses actually are.
School is going well. He has today off for Columbus Day and tommorrow off for superintendent's day but is looking forward to going back. Wednesday they are having a disaster drill and have to walk to the firehall. Michael should enjoy that. By the way, did everybody notice that it is the middle of October here in the north country and Michael is wearing a tank top? Amazing! Keep Michael in your thoughts and prayers, JoAnne

Wednesday, October 3, 2007

Michael's First Day of Pre-K......

Well it has been 6 weeks since Michael's surgery and he is doing very well. He was released by his surgeon to start Pre-K on Monday. He is going right to our local elementary school. The bus comes to the house at 12:20 pm and brings him back home around 3:55 pm.

According to Michael they learn "lots of things at school because that is what you do at school." They learned their numbers yesterday. When I pointed out that he already knew his numbers, he said he knew that but he had never learned them at school before. They also go outside for a while each day and they have snack. He's not allowed to play on the playground equipment but so far he doesn't seem to mind. He wasn't too sure about school at first but seems to be settling in. He has a new friend named Jessica, she is in his class and rides the bus with him. Today he gave her a hug before he got off the bus.

We have been working with Michael everyday in some pre-school and kindergarten workbooks that he received as gifts after his surgery. We haven't seen any memory deficits or learning disabilities (thank God). He did have to have a school physical a couple of weeks ago and did very poorly on his eye exam. We took him to an opthomologist last week and he has to have glasses. He was VERY upset at first but when we went tonight to order them, he was pretty cooperative. He even asked when we could go back and get them. (Okay - I'll confess. He still wasn't happy about wearing glasses so I bribed him with a tractor. Hey whatever works. He's had to endure so many changes the last couple of months, I hate to see him upset.)

His hair is growing back nicely. There are just a couple of spots along the incision that are still bald but they get smaller every day. Michael is not self conscious at all when people ask him about his head (surprisingly it's usually adults and not children). He tells them his nose felt funny, he went to the hospital and he had an operation. The doctors removed the bad thing from from his head and now he feels better. Thankfully, he is still seizure free.

Since he stopped the steroids and the swelling in his head went down, his appetite is back to normal. He has gained 9 pounds since his surgery. I didn't realize how thin he got over the summer. He is a SOLID little boy now. If you didn't see the scar on his head, it would be easy to convince yourself that is was all a bad dream.

But, unfortunately it is not. A mother in a support group I belong to said something that summed up life for us these days. She said some days she wakes up feeling normal and knowing with certainty that her son is going to be just fine. And then other days she wakes up in a state of sheer panic, worrying that she isn't doing enough or she will miss something or make the wrong decision. (Fortunately, so far Jeff & I don't have those kind of days at the same time.)
We are just waiting for December to have the next MRI and to see the specialists again. Until then we are still trying to learn all we can about Michael's tumor and the best possible treatments. We will keep everybody up to date of any changes. In the meantime, remember to keep Michael in your thoughts and prayers. JoAnne

Wednesday, September 5, 2007

Our new routine...

Michael is doing better than we had ever expected. He is off all the medications except the anti-seizure drug which he will have to take for a year or two. (But we would like to get him off that as soon as possible as this particular drug can affect the liver.) He took the last of the steroid Monday so he has had quite a bit of swelling on the side of his head the last couple of days. He has also complained of a headache for the first time since we left the hospital so we assume there is some internal swelling too. I spoke to the surgeon's office and they said to raise his head while sleeping and it should go away in a couple of days. They also reiterated what a fantastic recovery he is having.

Michael is still eating almost non-stop! Part of that is from the steroids but I also read an article that said brain swelling can also increase appetite. We can't keep bananas, Rice Krispies, Popsicles or ice cream in the house. He has gained 5 pounds since coming home from the hospital (for a total of 8 pounds since the seizures stopped). He looks wonderful. He had gotten quite thin since all of his symptoms had started. He is eating breakfast for the first time since he was an infant. No matter how we tried, he just wouldn't eat in the morning. I wonder now if that was due to the slow growing tumor, if even before the morning vomiting started, he just didn't feel good when he woke up.

We went to an open house at our elementary school yesterday where Michael will hopefully be going to Pre-K in a couple of weeks. At first he didn't like school or the thought of going there. By the time we left an hour later, he didn't want to leave! He said tonight that he likes his new school and he can't wait to go (yeah!!). He is already making plans for what toys he would like to take in for show and tell and which books he would like to share with the other kids. None of his classmates seemed to pay attention to Michael's lack of hair and his large incision (phew!). I think by the time he goes to school, his hair may actually hide his scar.

The surgeon's office told us today what milestones to look for to gauge when we can send him. She thinks by October 1st he could go with some restrictions. They don't have formal gym class so Michael would just have to stay next to the teacher or play inside if they go out to the playground. Of course by October, there probably won't be too many outside play days left. He still has to be careful about getting hit in the head (for 6 months or the end of February) but we want to get his life back to normal as quickly as we can as safely as we can.

For now, Jeff & I are working opposite shifts since Michael can't go to daycare (the doctor's were pretty insistent about that). For instance, this week I worked 7 am - 3 pm and Jeff worked 4 pm - midnight. When Jeff works midnight - 8 am, I will work 9 am - 5 pm. And, when he is on days - ugh, I don't want to think about that. I am very lucky that my bosses are good to me and are very accommodating. Jeff has to work a double tomorrow (8 am - midnight) so I will be home all day and then I will work extra hours Friday (Jeff's day off).

I think Michael & I may go to the zoo tomorrow. He has been spending a lot of time watching TV & movies and the zoo would be a way to get him moving. That way we can get some safe, quiet exercise. I have to admit, I am getting to spend a lot more time with Michael since all this started and I guess that would be the one good thing to come out of all this.

Michael told me to night he likes being home a lot better than being in the hospital. I hope that means his stays there are becoming a distant memory. He has started to ask questions about his illness, which is like the Michael we know and love and is definitely a good thing. Thanks again to everyone for caring about Michael. JoAnne

Thursday, August 30, 2007

The stitches are gone...

We made the trek to Rochester today to see Dr. Pilcher (just in time as he leaves tomorrow to perform brain surgery on epilepsy patients in Cypress). Michael's anxiety level on the way down was very high. He cried most of the way and just kept asking if: 1) we could come back home today, 2) if there were going to be any needles and 3) if they were going to give him any medicine. Once we got there he settled down though.

Sue, Dr. Pilcher's assistant, removed Michael's stitches (all 65+ of them). Michael relaxed after Sue said she would do her best not to hurt him and assured him there would be no needles. He laid perfectly still and didn't make a sound. Sue said that in her 10 years of removing stitches, Michael was the best patient she had ever had. We were VERY proud of him.

Then we talked to Dr. Pilcher. He is very happy with Michael's progress and stated again with how happy he was with the surgery. Michael still has a ridge where the incision is. Dr. Pilcher said that will go away in a couple of months when the internal stitches dissolve. But, at the rate his hair is growing, the scar will be covered before that.

The pathology reports still says the tumor is benign but they changed the classification of it. They now say it is Astrocytoma, grade II and not a Gangloiglioma. It is made up of Astrocytes, which occur normally in the brain. Michael just had an abnormal growth of his. Grade II means it is fairly low grade (or slow growing). Some of these tumors can progress into the more dangerous high grade tumors so Michael will have to have regular MRI's to watch what the surgeons were unable to get. Dr. Pilcher hasn't ruled out trying to treat the portion still in Michael's brain in a couple of years if it moves to a safer position. We will just have to wait and see what the remaining tumor does.

For now it is just rest and recuperation for our little boy. He has to go back to Rochester in early December for an MRI and a meeting with Dr. Pilcher and Dr. Korones (the oncologist). Dr. Pilcher suggested we keep Michael out of pre-school for a couple of months until his skull and brain can heal. Although we agree with keeping him safe, he is a social little boy and loves to play with other kids so we will take it one day at a time for now. Thanks again to everybody for caring, JoAnne.

Tuesday, August 28, 2007

We've settled in...

Well, we are finally back into a normal routine at home. Michael is back to himself. He had a good day yesterday until dinner time. Then he complained his stomach hurt and was out of sorts until bedtime. Today he was wonderful all day. He played with his toys and did a couple of crafts. He seems to know his limits. He squats to pick things up as he says it hurts his head to bend over. It also hurts if he laughs, sneezes or coughs. The doctor says this is normal because doing those things increases the pressure in the head.

We were kind of concerned because Michael wouldn't talk about his head, his incision or his hair. If you tried to talk to him, he would get upset and go in the other room. Today he talked about it and even asked some questions. His hair is starting to grow back already so I think that makes him feel better.

We went to see Dr. Swan today. Michael was apprehensive and kept asking if she was going to do anything to him or give him any medicine. We had to reassure him that she just wanted to see him. She came in the room and put him right at ease. Michael gave her a big hug. He said she is his favorite doctor (ours too) and that she is pretty.

Next step is to have the stitches removed Thursday. We know he isn't going to like gong back to Rochester. Especially since Dr. Pilcher's office is right in the hospital. Hopefully that will be the last thing he has to endure other than periodic MRI's. I'll post here Thursday night and let everyone know how it went. JoAnne

Sunday, August 26, 2007

We're finally home!!

We got home around 3:00 pm. Michael was awake but very quiet and somewhat grouchy on the way home. We were afraid that coming home wasn't going to make him feel better but we couldn't be more wrong.

Michael has now gone to bed but the transformation this afternoon was amazing! He's been eating non-stop, talking like a little chatterbox and his stomach doesn't hurt anymore. He sat and played with his toys for a little while this afternoon. We have large mirrored doors on the closet in our entrance way and I was concerned he would be obsessed with looking at his head but he hasn't looked at all. We always knew Michael was a great kid but now we think he is truly amazing. He went through more this week than a lot of adults have gone through in a lifetime and he did it with courage I didn't think a 4 year old could possess.

When we got home, people had decorated the house with balloons and yellow streamers which was nice. We also found out that big brother Brian had shaved his head like his little brother. Chance was happy to see us and Midnight was all riled up. It is great to be home.

Dr. Swan (Michael's pediatrician) wants to see him tomorrow and we have to go back to Rochester Thursday morning to see Dr. Pilcher (the neurosurgeon). While there, Michael will get his stitches removed and we will get to see his last MRI and get the final results of the pathological tests on the tumor.

I was looking back at some of the posts I made this week and saw all the typos. Sorry about that. I was posting from the hospital and the system there isn't very good. It is through the TV and it is hard to read the screen and next to impossible to navigate with the keyboard and mouse. I also noticed that I had never posted about the pediatric oncologist that sees all Dr. Pilcher's brain tumor patients that we had met with.

It was a very positive conversation. He said (& I quote) "I think we are done with Michael". He doesn't think Michael will need anymore surgery, chemo or radiation. He also said that in his experience with children as young as Michael, he doesn't see a lot of lasting side effects. We have been worried about memory loss and learning disabilities and he said not to be. Although Michael is left handed, he uses both his left and right hands comfortably and he thinks that is proof that Michael's brain has already mapped paths between the two sides and will make up for any deficits the tumor has caused. Like I posted earlier, they think Michael was born with this tumor and that his brain had adapted to it. We got a lot of good news this week and this was some of the best.

Thanks again to everyone that cared enough to follow Michael's progress through this page and to those that posted comments. With all the good news we got this week, everyones thoughts and prayers must have worked! Thanks, JoAnne

We're going home!!

We're just waiting for neurosurgery to sign the papers so Michael can go home (we've been waiting since 8:00). Michael is a little tired so he should sleep all the way home. He's still a little weepy but we are sure he will be better in his own surroundings!!

We'll keep posting here for a while for the family & friends that don't live nearby.

Saturday, August 25, 2007

Day four post-op..

Michael had some setbacks today so we are still in the hospital. He woke up this morning and had a terrible headache and had an episode similar to his seizures. When the spell was over, he said the headache was gone.

Shortly thereafter, he started crying that his stomach hurt. He hasn't eaten very much today and has drank even less. What he has eaten, he hasn't kept down and he has slept all day except for about 90 minutes. He is also complaining that his right eye hurts and the light is giving him a headache. We even took him outside and showed him a construction site complete with a crane and he didn't perk up.

The doctors don't seem concerned but we decided to stay one more night since the hospital is so far from home. Unless Michael gets worse, we are going to come home in the morning and see if that makes him better. We will post when we know for sure. JoAnne

Friday, August 24, 2007

Day three post-op...

Michael had a great night. He woke up a couple times but was quiet and went right back to sleep. He even had a bowl of cereal at 2:00 am (and I thought we were done with 2 am feedings).

When Daddy got here and Michael had had some breakfast, we went for a walk down to the play deck. Michael practically ran down the hall and was kicking a ball back and forth with Jenny. It was good to see him so full of energy and nerve wracking at the same time. I guess we will spend the next couple of months holding our breath, afraid he might fall and hit his head.

After that, we took one of the kid carts outside and went for a walk. Unfortunately, instead of satisfying Michael's need to go outside, it made him want to go home all the more. He spent quite a bit of the afternoon crying to go home until they gave him something to sleep (which he is doing now).

Now for the update from the doctors. We are going home first thing in the morning!! In fact, Michael is doing so well, they wanted to send him home today but Jeff & I weren't comfortable with that. We have to come back next Thursday so Dr. Pilcher can remove his stitches but I think Michael will be glad to get home. He is worried about Chance (the dog) & Midnight (the rabbit).

I will post tomorrow and let everybody know if we do go home.

Thursday, August 23, 2007

Day two post-op...

As Dr. Pilcher predicted, today was not one of Michael's best days. He got very little sleep last night. He was very uncomfortable, irritable and inconsolable. It didn't get much better with daybreak. He got his appetite back and actually ate a good breakfast then they told us he was having an MRI under general anesthesia this afternoon and couldn't eat anymore.

Around 1:30 pm Michael was begging to eat and asking us why we were letting him starve to death. It wasn't a pretty scene and tensions were pretty high. They finally took him down around 2:20 pm and he was gone until 5 pm. When he came back up his bandages were gone and Jeff & I almost didn't recognize him. His mood was a lot better and we actually saw quite a bit of "our" Michael.

They shaved his entire head, which is actually better than them just shaving a patch. The incision is a LOT bigger than we expected and the right side of his face and his is swollen terribly. I talked to Michael's nurse and she told me to expect the swelling to get worse before it gets better.

Michael can feel the ends of the threads of his stitches and keeps trying to pull at them. We told him tonight (in very simple terms) what the doctor did to fix him. He cried a little. He hasn't seen himself in the mirror yet and we want to keep it that way as long as we can. We're hoping he will be better able to handle what he will see when he is feeling better.

Tomorrow we hope to take him out on the playdeck as he asked to go outside all day today. We should also find out the results of the MRI. We don't expect there to be much news since it was done mostly as a base for future MRI's.

Michael has been sleeping quite peacefully for about an hour. A good nights sleep will be good for him. Thanks to everybody that has posted comments or emailed. The support of our family and friends has really made a difference. I'll post again tomorrow. JoAnne

Here are some more pictures

Michael had a good morning - he had eaten two bowls of cereal before Brian and I made it to the hospital this morning. Unfortunately, he had an MRI scheduled for this afternoon around two, so he wasn't allowed to eat for the rest of the day. That didn't go over so well, and he was pretty upset and hungry by the time they had come to get him for the MRI. The MRI was done to establish exactly how much of the tumor was left in his brain, so they can determine if it grows in the future.

After the MRI though, things went much better. When Michael came back, his bandage was off. We almost didn't recognize him at first. His head was completely shaved for the surgery, and his scar is in a stretched-out question mark shape, starting right at his hair line, going back past his ear, and looping around and coming down right in front of his right ear. I think I counted about 65 stitches.

When Michael came back from the MRI, he was just like normal: the happy, talkative little boy we hadn't really seen in a few days. He told us he had to start eating better after these past couple of days and had two more bowls of cereal, an ice cream cup, two popsicles, and some applesauce. He seems to have his appetite back!

Mom and Dad explained to Michael that there was something bad in his head that was making him sick and the doctors had taken it out. He seemed to take this pretty well and didn't ask any questions. When he was told they had cut all his hair, he said that was good, he'd just have to get it cut again anyways! He's felt his scar a few times, but I don't think he realized what it was. Now that his bandages are off, you can tell there is a bit of swelling on the right side of his face, and his nurse said it'll probably be like that for a little while still.

Except for the little bit in the middle though, it was a good day. We're hoping he'll feel up to going to the playdeck tomorrow for the hospital carnival, or at least into the playroom next door for some crafts.

Here are some more pictures from today. Good night.

Eating breakfast with Dad; Taking a naps with Jenny

Watching TV with Brian and Mom

Eating dinner and another popsicle

Wednesday, August 22, 2007

Some pictures

Some more good news - Michael was moved out of ICU tonight. Since he doesn't need such constant monitoring, a lot of the tubes and wires came off. It sounds like he might have an MRI tomorrow, but I don't know if that's definate yet.

So here are some of the pictures we've taken today. Enjoy!

Eating a popsicle with Mom; Taking a walk down the hall (sorry it's blurry)

Watching a movie (with blue lips from the popsicle still); Eating some jello

Hanging out with Dad; Cuddling with his new animal (the stickers on his belly can come off whenever he's ready)

More wonderful news

We just met with a pediatric brain tumor specialist who will be working with Michael during his follow-up visits, and he's my favorite person in the world right now. After he took Michael's history and did a quick physical exam, he told us lots of great things. He was also told that the tumor was benign, and that everyone is pretty sure it is a ganglioglioma like they suspected. This is a very slow growing tumor.

Dr. Pilcher said yesterday that they think Michael was born with the tumor. This means that it has always been in the way of memory formation and learning, and that his brain learned to cope with this a long time ago by transferring the responsibility of memory formation to another area of the brain. Since this transfer of responsibility has already worked fine, they don't think he will have any problems learning and remembering new things.

It also looks like Michael is seizure free right now. Although he is on the anti-seizure medicine still, he had still had seizures when he was over-tired or sick. Since he's about as tired and sick as he's ever been right now, it's great that he's not having any seizures. There is still a chance that the scar tissue can cause seizures, but most of the "focus" is gone.

Dr. Lui (epilespy specialist) and Dr. Wang (neurologist) both stopped by while Michael was asleep and seemed very pleased with the outcome of the surgery.

Michael is having a good day too. Earlier this morning, he was able to get up out of bed and walk across the room and sit with Mom for a bit while he had a popsicle. A few hours later, he asked to get up and walk around again - the nurse couldn't believe it. So Dad carried him up and down the hall a few times. He also had another popsicle, a cup of jello, and some saltines. Other than immediately after they gave him an anti-inflammatory medicine, he is keeping everything down and feeling well. They are going to try and give him some anti-nausea medicine or try a different anti-inflammatory later that might not make him sick.

He's been awake a lot today, and is already watching his new Handy Manny movie for the second time. He is more responsive to our questions as well. After he had said "no, thank you" to something, he turned to Mom and said "See Mom, I used my manners." It was the first unprompted thing he had said, and sounded just like normal again. Most of the time he says his head doesn't hurt.

Overall, everyone is really impressed with the surgery and his progress. We hope to be moved out of ICU later tonight or tomorrow. Everything is going great!

We will post a bunch of pictures tonight (I forgot the cord to transfer them off the camera to the computer - oops!) and will update when there's something new.

Day one post-op...

Michael & Mom didn't have a very restful night. Unfortunately Michael's stomach is very upset from the anesthesia and all the medications he is on. He was sick several times during the night. Fortunately he rested some in between episodes of nausea. There were also some problems with his catheter, so he was jostled around a lot while we changed his bedding. Also, when his pain would increase, so would his blood pressure so the alarms on his monitor went off quite a bit during the night.

Dr. Pilcher was in around 7:30 am and is very pleased with how Michael is doing. He was amazed at how uncomplaining he is. He told Michael he is the best patient in the hospital. Michael has some swelling of the face & head so they are going to come back and loosen his dressing in a little while.

His nurse said that the goal today is to get Michael out of bed and maybe have him take some clear liquids. They are going to remove his catheter and arterial line, which is good since both had problems during the night. The arterial line is a sensor that is in the artery in his wrist and is how they have been monitoring his blood pressure. He will keep his IV and ECG leads for now.

The residents did their morning report right outside Michael's room so Mom got to eavesdrop on what the doctors really say when they don't know the patient is listening. They really think he is doing well and can't get over what a wonderful patient he is. His white blood cell count was elevated but apparently is coming down.

Right now Michel is sleeping peacefully and I am waiting for Dad to get here so I can take a shower and get dressed. If we hear anything new, we will let you know. Keep thinking of Michael. JoAnne

Tuesday, August 21, 2007

Not much news...

So not much has changed. We were all able to go in and see Michael (in shifts) this afternoon in PICU. Most of the time he was asleep, but we woke up a few times - but really wasn't very talkative. He told the nurse his head wasn't hurting (thank you morphine!) and would answer their questions during their hourly exams.

The PICU attending told us that Michael should be able to go to the progressive care unit after 24 hours. This was the unit he was on during his last stay, so it will be nice to see some familar faces. One of the nurses recognized Mom and Jeff in the hallway and stopped to ask after Michael, which was really nice. The doctor also said they might be able to take off the bandages for a little while tomorrow to let it air out. One of the first things Michael said when he woke up was asking us to take his hat off, so he should like that.

Hope everyone has a good night. We'll update again tomorrow when we know anything new.

You can't really tell in the photo, but the sensor on Michael's finger glows red just like E.T. We'll have to watch the movie with him soon!

Things went great

We arrived at the hospital at 6:30 am and they took Michael into surgery at 7:48 am. We received phone updates throughout the morning and early afternoon. At 1:30, Dr. Pilcher and his assistant, Sue, came out to talk to us with a smile on their faces.

According to Dr. Pilcher, the surgery went quite well. He was able to get most of the tumor despite the difficult location. He was concerned about taking all the tumor as it was putting a lot of pressure on the pituitary gland and releiving all the pressure at once could cause problems.

They did a preliminary pathological test on the tumor and it appears benign. At this point they don't think he will have to have radiation or chemo. Michael will have to have CT-scans and MRI's for a while to monitor the tumor.

Michael is in Pediatric ICU now and is resting peacfully. They are giving him Morphine every 2 hours and Tylenol every 4 hours. He should be transferred to the regular unit in a day or two and should be able to go home in 5 - 7 days.

Michael can recieve mail addressed as follows (we are not posting his full name on here since anyone can get to this site):
(Now deleted since we are home)

If we learn anything else, Jenny will update back at the hotel around 9:30.

Monday, August 20, 2007

We're here...

Well, we made it to Rochester. Michael slept the whole way down. Jeff, Michael, Dad, Fran, Jenny & I had dinner at the hotel. Patti, Herm & Brian should be here anytime. We hope to see Jeff's Dad tomorrow.

We have to be at the hospital at 6:30 am. Michael is in great spirits (I guess ignorance is bliss). We will post as much as we can during the day tomorrow. Keep us in your thoughts & prayers, JoAnne

I spoke with Dr. Pilcher's assistant

I spoke with Dr. Pilcher's assistant this morning. Her interpretation of what is to come is a lot scarier than what we had been told up to now. She stated Dr. Pilcher doesn't think he can get the whole tumor. There is part of it that goes into the brain stem and he won't know if he can risk trying to remove it until he is in there. Also, there is a major artery that runs through the tumor and they told us before that that was not a big deal. Now she is saying that they don't know if they can remove that part either because it could cause Michael to have a stroke if they do. Either of those scenarios will mean radiation (which has it's own risks and side effects).

Michael is going to have a question mark shaped incision behind his right ear behind the hairline. They will put in titanium plates to hold his skull together. It will take 6 months for the skull to heal and during that time Michael can't ride a bike, play on a swingset, etc. (That means no John Deere tractor - that is not going to go over well.) Dr. Pilcher's assistant said that Michael will not feel up to going to Pre-K like we had planned, which is a contradiction from what we were told before. That is very discouraging. We were told before that he would bounce back quickly and that is not the picture she painted this morning.

Well, we will just take things one day (or one hour) at a time. Michael is the first surgery tomorrow morning. We have to be there at 6 am and surgery starts at 7:30 am. He will be in ICU 1 -2 days and have a total stay of a week. They will keep him an extra day or two since we live so far from the hospital. We will keep everybody posted as quick as we can. JoAnne

Sunday, August 19, 2007

Getting ready for Rochester

It is Sunday night and Michael has just gone to bed. We will be heading to Rochester sometime tomorrow. Michael now knows we are going back to the hospital so the doctors can make his nose better and make the seizures stop. As advised by the doctors, we haven't given him any details about how they are going to "fix" him. He thought we were just going to the hospital for one day and wasn't happy when I told him it was going to be a few days. He accepted it after a while.

Jeff & I are glad the time has come. Michael didn't have a good weekend. He had 8 seizures yesterday without any reason like being tired or sick. And, he had 3 seizures today even though the doctors increased his medicine. If the seizures don't settle down tomorrow, the neurologist wants to try to add Valium to his meds.

Jeff is working his last shift in Massena tonight. As much as he wants to be closer to home, he is really sad about leaving the friends in Massena. It's just one more thing on his mind right now.

We will keep posting here from Rochester. We will try to post some pictures of Michael's progress for those of you that can't be with us. Keep us in your prayers.


Dad always said the chicks would dig me

Wednesday, August 8, 2007

We're set for August 21st

I have spoken to our neurosurgeon's office in Rochester and Michael is definitely scheduled for surgery on Tuesday, August 21st at 6 am. We will be going down Monday night and staying at the Ronald McDonald House right in the hospital.

Michael has been doing very well since coming home from Rochester. With the exception of last Saturday, he has been seizure free. He came down with a cold on Friday and the neurologists tell us that any infection can lower the threshold for seizures and that is exactly what happened. Michael had 6 or 7 seizures on Saturday before things seemed to settle back down. It was a reminder to Mom & Dad that this new "normal" is just a fragile illusion.

We are thrilled to say Michael is back to being the happy, easygoing child he was before all this started. Prior to his stay in the hospital, (in addition to the seizures) he was sometimes aggressive and a couple of times had 2 hour meltdowns that would end with what we now know are the seizures. He had also become somewhat hyper and seemed unable to sit still for even a few minutes. Jeff & I thought this was an age thing or that we had just spoiled him too much (after all we had been spared the terrible twos).

In learning about his illness, we discovered that these are all symptoms of the tumor and it's location. The medication has definitely alleviated ALL of his symptoms and we have learned that under no circumstances can Michael be allowed to get tired (or we might see the return of Mr. Hyde).

On a positive note, Jeff is being allowed to transfer to the Alex Bay port when he returns to work after Michael's surgery. It's not the way we wanted it to happen but we will be glad to have him closer to home. We will keep you posted on any developments. Keep us in your thoughts and prayers. JoAnne
Michael & Mommy in Vermont

Tuesday, July 31, 2007

Where things stand right now...

Michael's symptoms began last spring. He woke up each morning and be sick to his stomach while complaining his nose felt "funny". He went to the doctor and had a bunch of blood tests done and they found nothing. When the symptoms continued, they did an upper GI series and found nothing. They thought he was lactose intolerant, then they thought it might be allergies, by July they were stumped. We began suspect he was having absence seizures during these little "spells" so back to the doctor we went. They decided to do some neurological testing but couldn't schedule him for 2 weeks.

In the meantime, we decided to go on our annual trip to Stowe, Vermont. While there, we noticed that when his nose felt funny, his right eye would twitch and his right hand would shake. The spells were also happening more frequently and for longer amounts of time (they were up to about a minute). On Friday, after a particularly bad episode, we called the pediatricians office from VT. The nurse said she would leave a note for the doctor. We waited a couple of hours to see how Michael was and then headed home.

As we were walking in the house, the phone rang. It was another doctor in Michael's pediatricians office that he hadn't seen, Dr. Swan. She said she read the note the nurse left and was very concerned (it was 4:55 pm on a Friday afternoon). She wanted to see Michael right away if we didn't mind. We were ecstatic!! She admitted Michael to SMC that night. After she witnessed one of his episodes, she diagnosed them as partial seizures and began him on anti-seizure medicine. She tried to get an MRI and EEG done but SMC doesn't have staff to do that on the weekend. After a lot of begging by Dr. Swan, she was able to get an CT-scan. She told us that the scan showed a mass on Michael's brain that they thought was an arachnoid cyst.

On Saturday, despite the medicine, the seizures continued and he actually had 3 in one hour that evening. Dr. Swan made the decision to transfer Michael by ambulance to Strong Memorial Hospital in Rochester. Sunday morning they began a 24 hour EEG. This involved them super gluing 24 wires to Michael's head that attached to a box in a backpack on his back and then plugged into the wall. At first Michael had a hard time sitting still but got used to it after a while (we watched "Flushed Away" over and over and over). On Monday afternoon they finally did the MRI under sedation. Tuesday afternoon they gave us the results. Michael has a ganglioglioma brain tumor.

The doctors were very positive about Michael's long term prognosis. They said the tumor is operable and they think it is benign (but won't know for sure until they biopsy it). If they can get it all, it shouldn't come back. If they can't get it all, he will need chemo or radiation to kill the tumor. Then it should "fall down" into an area they could get to and remove it.

All the edges of the tumor are well-defined, which they say is a good thing. He will have to go back to Rochester for surgery in the next few weeks (the date is tentatively set for Aug. 21). He'll have to stay in the hospital for about a week. He'll also have to stay on the anti-seizure medication for two or three years, since there will be some scarring on his brain. Overall, the doctors sounded very optimistic. The surgery will be preformed by the head of neurosurgery, Dr. Pilcher, who's one of the best surgeons in the hospital.

Everyone there is wonderful, and they all got a kick out of Michael (he was very charming, of course!). The pediatric unit has all sorts of toys and play areas, and they have craft activities every day. They whole pediatric floor is beautiful and interactive, and the staff is amazing (to the kids and the parents).

Right now, Michael's is doing well. He isn't in any pain or anything. He was kinda bored at the hospital, but was in a great mood most of the time. He even said on the way home he wouldn't mind going back to visit the doctors and nurses. He knows he'll be going back, but doesn't really know what for (or seem to care at this point). (This was posted by Jenny and edited by Mom)

Michael's Care Page

I set up this page for Mom and Jeff so we can easily update everyone on Michael's progress. Feel free to share it with anyone who has slipped our minds.
Under his picture on the right, you can sign up to get an email each time we update the blog. I'm still learning how to use this, but let us know in the comments if you run into any problems.
Thank you all for you love and support.

PS-Thank you to Emily, Adam & Bryson for the idea!

Michael and Daddy at Pixley Falls