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

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.

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

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.

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.
Jenny





Eating breakfast with Dad; Taking a naps with Jenny




















Watching TV with Brian and Mom



Eating dinner and another popsicle

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!
Jenny

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.
Jenny

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

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.

Jenny

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.

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

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.

JoAnne

Dad always said the chicks would dig me

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