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

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

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

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

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

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.

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