Some good news and some bad news...

First the good news: Dr. Korones called this afternoon and said Michael's latest MRI looks positive. There is no change from the November MRI (and that is the official report from the radiologist). He interprets that to mean that the tumor is not "acting aggressively". That is good news!!

Now the bad news: Michael is having a terrible time with the chemo. We've had a challenge the last couple of days getting him to eat. He says his jaw hurts too much. (Jaw pain is one of the possible side effects of Vincristine.) And unfortunately what he has eaten and drank, he hasn't really kept down. We thought that the anti-nausea medicine had worked today but he was terribly ill again this evening. He was very sad and just wanted to know when he would feel better. I wish I had an answer for him. It is a shame that the cure for the illness that started as frequent vomiting has come back to that. I spoke to Dr. Korones about the side effects Michael is experiencing and he was surprised. He thought maybe part of the side effects was from the anesthesia and surgery. Let's hope so and pray that our little guy starts to feel better real soon. JoAnne

One treatment down, way too many to go...

Well, we made it home safely around midnight last night. As predicted, it was a very long day. Michael was incredible though. He is such a wonderful little boy.

We arrived at the hospital at 7:30 am. I think Michael did remember that we went to the same part of the hospital as the day of his surgery. He was a little apprehensive once we stepped off the elevator near the surgical unit but did a great job of staying calm. The nurses did all their pre-op routines and they took Michael into surgery at 8:30 am. The surgeon, Dr. Drugas, came out at 9:40 am to tell us that Michael was out of surgery and on his way to have his MRI while still sedated. He told us everything went well and he was able to implant the port-a-cath successfully. Although, he made no attempt to hide his disapproval for our choice of port. In fact, he was actually very rude.

When I talked to Dr. Korones about it later in the day, he smirked and said that Dr. Drugas had conveyed his displeasure to him the day before. He said Dr. Drugas is a very smart man and an excellent surgeon but is very opinionated and not afraid to express it. He also said Dr. Drugas implants the ports but doesn't work with them day after day so isn't the best person to determine the appropriateness for Michael. He assured us we made the right choice. And we agree.

At 11:30 am they came out to get us to go into recovery room and see Michael. He was a little cranky when he first woke up but a couple of Popsicles and a new pair of Thomas the Train dump trucks changed all that. (We had held back a couple of his small Christmas presents as we knew he may need a little pick me up in the next couple of months. I read on a support site for parents that parents of children in Michael's predicament often want to know if "bribe toys" are deductible as medical expenses and it made me smile.) We stayed in recovery until around 2 pm because they didn't have his room ready.

Michael's room was in the same unit he was in during his last hospital stay. He told the nurses wheeling his bed that he was happy now because he remembered the play rooms. So, he ate a little lunch and watched a movie while he waited for them to remove his IV so he could go play. When the nurse removed his IV, she didn't put enough pressure on the hole in his hand and a few minutes later he started bleeding profusely. There was blood everywhere!! I think this was the most upsetting part of the whole day for Michael. In fact, when I was talking to his Aunt Patti this morning, he wanted to make sure that is the one thing I told her about.

We met with Dr. Korones in the afternoon and signed the consent papers for the chemo and he went over in greater detail what to expect. Michael will have chemo once a week (probably Friday) for 10 weeks and then will have 3 weeks when he doesn't receive a treatment. At that time they will do his next MRI. Then, after that first round, he will do 4 weeks on and 3 weeks off for the rest of a year. The most troublesome of the side effects is an allergic reaction to one of the drugs that happens in about 25% of kids. Dr. Korones said that they have another drug they can try if that happens but let's hope it doesn't come to that.

It wasn't until 6:30 pm that they began Michael's chemo treatment. First, they withdrew blood through his new port and then gave him the first of the 2 drugs with a syringe into his port. Then they administered the second medicine through his port with an IV drip. Next they "flushed" the IV lines with another drip to make sure he had received every drop of the medicine. And finally, they removed the needle from his port and we were done. We had to wait around for another hour while they gave us the necessary paperwork and medicines and were finally able to leave around 9:30 pm. Michael was sound asleep in his seat before we had gone 3 blocks and slept all the way home. We were anxious to get home last night since they are calling for a pretty good storm today.

Michael has 2 small incisions, one by his left collar bone and one slightly above his left nipple. The incisions were a little sore in the recovery room but Tylenol took care of that. He hasn't complained of any discomfort since yesterday but does touch his bandages once in a while and is favoring his left arm a little bit. You can feel the port under the skin and you can see just a small bump. We have some cream that we have to apply above the port and cover with a bandage about a half hour before we arrive at the hospital for his treatments. This will numb the skin so Michael doesn't feel it when they access the site.

Michael had a roommate for his brief stay yesterday. It was a boy that broke his leg while sledding. His extended family came to see him last night for a pizza party. The boy's uncle got talking to Jeff and his Dad and told them that his son went through the same thing when he was 4 (he's now around 8). He had a brain tumor, endured a bunch of surgeries and chemo and is now in perfect health. In fact, he had Dr. Korones also and the family couldn't say enough nice things about him. It is comforting to see a child that was in Michael's situation a few years ago so happy and healthy.

All in all, the day went well and was uneventful. Unfortunately, Michael woke up around 3 am and started vomiting. He was sick for about an hour and then went back to sleep. They have given us some medicine for the nausea. Let's hope it works. So far that beautiful smile we love so much hasn't dimmed a bit. As a matter of fact, he is using it on his father right now, trying to get him to take him outside (and I think it is working!).

We have to go to Rochester next week for Michael's next treatment and then we start in Syracuse the week after that. We are playing phone tag with the doctor from Boston so there is no new news on that front. Hopefully Monday we can touch base with her and will also have the results of yesterday's MRI from Rochester. I will post again when there is anything new. Keep thinking of and praying for Michael, JoAnne

We're here (again)...

Well, we are at our hotel and settled in. We hit some light snow in the usual places but it was definitely a better trip than last time. As you can see in the picture to the left, Michael has already enjoyed the pool! We are just praying that that beautiful smile doesn't start dimming tomorrow. For now, he is laying in bed, drifting off to sleep.

Tomorrow is going to be a long day. We have to report to the pediatric surgical unit at 7:30 am. That is where we went to check in for Michael's surgery in August. We are hoping he doesn't make that connection or he will really get upset.

First, he will be taken to surgery and will have a "port-a-cath"(which is internal) implanted. We had originally thought to do a Hickman catheter (which is external) but after talking to several medical professionals and doing some research on the internet, we decided to go with the internal line. The upside to the internal one is no weekly maintenance by public health, swimming and bathing are not a problem and there seems to be less of a chance of infection. The downside is they have to pierce the skin for each treatment and if there is a problem, surgery is required to remove it. Dr. Korones said Michael will be uncomfortable for a bit while he heals from the surgery but that this will be the better choice in the long run.

Believe it or not, Michael doesn't mind needles but hates band-aids so the internal port is probably a better choice for him. Dr. Korones said they numb the site before accessing the port so Michael shouldn't mind that part too much. But if we had chosen the external port, it had to be taped to his chest and it would have been a dramatic scene everytime we had to remove the tape (trust me). I guess the bottom line is we didn't like either choice but had to choose one. We know that Michael has to live with our choice for the next year or more so this weighed heavily on our minds. We hope we did the right thing. I have added a link to the right under "Favorite Links" that explains what a port-a-cath is. And if you scroll all the way to the bottom of that page, you will see a link for a video that shows how they access the site to administer the chemo or to draw blood.

After the port is in, Michael will have his MRI and his first chemo treatment. There is no schedule for them but we are hoping they aren't too late in the day. Dr. Korones called just as we were getting to the hotel to see how we were doing and said that by this time tomorrow (8:30 pm), it will all be over and we will be on our way home. Let's hope so. I will update Michael's blog when we get home tomorrow night to let you all know how we made out. Keep Michael in your thoughts and prayers, JoAnne

There's been a change in plans...

I called the hospital this afternoon (as directed) to see what time we had to be there in the morning. They said Michael was scheduled to arrive Friday, not tomorrow. So, I called Dr. Korones' office and they told me they scheduled everything for Friday and forgot to tell us. (This is a really good thing!)

Michael will have his port implanted in the morning and then he is "on call" for the MRI. He will also have his first chemo treatment sometime in the afternoon and then hopefully we will come home that night. Since he can't eat before either his surgery or MRI, hopefully this means he will be scheduled early in the morning and maybe they will do the procedures back to back so he doesn't have to be sedated twice.

There was a call from Boston on our answering machine on Friday night. The woman that called said Michael's records didn't make it into their conference on last Thursday, but will be included this week. I haven't had a chance to talk to her since I had my surgery first thing Monday and haven't been able to talk well since. (My surgery went well.) I should be able to talk coherently by tomorrow, so I will give her a call.

Those of you that don't live around us may not know, last Wednesday we had a terrible windstorm here. There were wind gusts up to 85 mph. It was incredible. As you can imagine, there is a lot of damage in the area to trees, roofs, power lines, etc. Tractor trailers were even being blown off the road. Jeff said the next day, his ride to work looked like a war zone.

On a more personal note, that morning we heard a large BANG at our house. When we looked outside we expected to see part of the roof or siding laying on the ground but fortunately we were wrong. Unfortunately, Michael's wooden playset wasn't so lucky (pictured above on a better day). It was laying on it's side (pictured below) which is pretty amazing since it came in 4 boxes that weighed a couple of hundred pounds each. Michael was heartbroken!! This is the playset we were in the middle of building when Michael was hospitalized and diagnosed with his brain tumor. He was able to play on it for a couple of weeks but then hasn't been able to since his surgery, so it is still brand new to him.

Jeff & I went out and unhooked the slide and tunnel to try to prevent anymore damage. After I went to work, Jeff used his tractor to stand the main structure upright. Then over the weekend we bought some new cedar and Jeff replaced the boards that were broken.



On Monday night, Uncle Jeff (our friend, neighbor and Michael's godfather) came over and helped Jeff put the roof back on and reattach the tunnel. And they did it in the dark. In mud up to their knees. The good news is that the playset is almost as good as new.


Notice Supervisor Michael overseeing the project in the photo above with his very own hardhat. (And for anybody that wasn't aware- you can click on any picture on this blog and it should enlarge them so you can see them better.)

If you would like, check the post I did after Christmas, I have added a picture of Michael on Christmas morning. I will post again when we get to Rochester and update everybody on how things are going. As always, please keep Michael in your thoughts and prayers. JoAnne

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