2008 is off to a rocky start...

New Year's Day morning found me with a horribly swollen face. What I had thought the day before was a sinus infection, turned out to be a root canal I had 30 years ago "gone bad". I went to my dentist yesterday morning and he sent me to a specialist in Syracuse in the afternoon for emergency surgery. Jeff left work early, we drove to Syracuse and sat in the waiting room 45 minutes to learn that there was too much swelling for them to perform the procedure. I am on high doses of Penicillin that will hopefully help the swelling go down so they can do the surgery on January 14th. I am not sure that plan is working since this morning the swelling had spread enough that my left eye wouldn't open for a while. We'll see what tomorrow brings and if the swelling isn't better, I think I will call the group in Syracuse to see what they suggest.

Today was our trip to Rochester to talk to Michael's oncologist, Dr. Korones. The weather was not that great going down and it took us an hour longer than usual. We had a long talk with Dr. Korones and Jeff and I both feel a little better after the visit (all things considered). Dr. Korones said that although radiation can be more effective than chemotherapy on tumors, it is very dangerous in children under the age of 10. So, he has recommended we start chemotherapy and Jeff & I have agreed.

He gave us the choice of 2 different regimens:

Regimen #1 is a tried and true course of treatment that consists of the drugs Carboplatin and Vincrisine given weekly by IV over the course of a year.

Regimen #2 is a relatively new regimen that consists of 4 drugs given both by IV and orally over the course of a year. The oral part is taken at home and the IV portion is every 3 weeks.

Although the second choice has shown SLIGHTLY better results in a recent clinical study, we have chosen the first regimen for several reasons. The most important being that Dr. Korones said the newer treatment plan is "rougher" with side effects that are both more severe and more frequent (including the chance of developing secondary cancers). And as I said above, there isn't enough of a difference in the results that Jeff & I think it is worth exposing Michael to the increased side effects.

There are a few side effects with the Carbo/Vinc regimen. First, there is the one that we all associate with chemo, hair loss. Although it is possible, Dr. Korones doesn't believe Michael will lose his hair which was a big relief! Michael doesn't take changes like that very well. We recently tried to explain to him what the tooth fairy was and he became VERY distraught at the thought that he may lose his teeth. It didn't help that we explained it is normal and every body's baby teeth come out to make way for adult teeth. He didn't want to hear it. Secondly, nausea, vomiting and fatigue are possible. Dr. Korones doesn't think Michael should experience those side effects either since his overall health and energy level are so great.

He said low blood counts are possible and they will monitor that weekly and if necessary Michael would receive a blood transfusion. He also said Vincristine can irritate the nerve endings throughout Michael's body and show up as constipation, abdominal pain, back pain, leg pain or jaw pain. We will just have to worry about that IF it happens. The good news is that none of these side effects are permanent.

As discussed in a previous post, we will be able to go to Syracuse to receive the weekly chemo treatments. We will be going to Rochester on January 17th and Michael will be admitted to Golisano's Children's Hospital. On that day, he will have an MRI under sedation for his doctors to use as a baseline to gauge the effectiveness of the chemo treatments. Then on Friday, he will have a "port" surgically implanted through which he will receive his meds and the doctors can draw blood samples. The port actually sounds like the scariest part to me. There are things that can go wrong with the port and Dr. Korones said that a county health nurse will have to come a couple of times a week to do "maintenance" on the site.

We talked to Dr. Korones about whether he still believes Michael's tumor is low-grade (benign) as opposed to high-grade (malignant) since it has started growing so soon after surgery. He said that was a very good question but he still believes it is benign. He said that it is possible that if there was not enough of the tumor removed and tested there could have been an error in the pathology reports (in other words if part of the tumor is benign and part is malignant and only the benign part was tested.) He said that quite a large part of the tumor was removed and tested and therefore the margin of error is unlikely. He just thinks that Michael has an aggressive low-grade tumor. But the important part is that it is curable and treatable.

We picked up the last of the records we need for our second opinion from Children's Hospital of Boston so we hope to hear from them next Friday. Jeff & I don't expect their recommendations to differ significantly from Rochester. If they do, then we will have to decide which group to follow and that would be a really tough decision. Jeff & I have already discussed it and if Boston recommends another surgery, we don't think we will do it at this time. The risks are just too high.

I will post again when we hear from Boston. In the meantime, please keep Michael in your thoughts and prayers. JoAnne

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

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

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