Meet Michael's new friend...

When Michael came home after his surgery last week, his big brother came by to visit him and he brought with him a new friend for our little buddy - a giant Baloo from the Jungle Book that is bigger than Michael! Michael was just awe struck when Brian walked in with it. It really made him smile and put a twinkle in his eye!

I am happy to report that Michael is still symptom free this week. It looks like they found the right regimen to keep Michael comfortable. I spoke with our nurse practitioner in Rochester today and she said she would make sure Syracuse has the details on what to give him when we start there this week. I will let everyone know how it goes. Keep Michael in your thoughts and prayers, JoAnne.

P.S. If you notice in the picture, Michael has a new haircut. His hair had finally grown back in enough after his surgery to be cut. Yeah!

The end of treatment number two...

Well, we just made it home from out latest trek to Rochester. Michael's blood tests and treatment took 6 hours on top of a stressful ride down and back. We hit heavy snow on the way down and a lot of blowing and drifting on the way home. It was a long day but everything went very well. And so far Michael isn't feeling any side effects.

They added 2 new anti-nausea medicines to the one he was already taking, so hopefully this week will be better than last week. They also "dripped" his Vincristine instead of "pushing" it so hopefully that will help with the terrible jaw and throat pain. Apparently, chemo drugs are easier to handle when they are administered slowly. The nurses had no problem accessing Michael's port and it worked perfectly. They couldn't believe that Michael wasn't apprehensive about them poking him with a pretty scary looking needle and didn't even flinch.

Michael enjoyed playing with all the toys they had in the treatment room. He also sat and made a Valentine decoration with a couple of other kids that were there for treatment. Next, he made me my own hospital bracelet that said "Mom" so I could be like him. Then he sat with me to watch a movie and promptly fell asleep. (They had given him some medicine to make him sleepy since they believe sleeping also helps the body adjust to chemo.) I did learn today that I need to pack a Treatment Day Bag with snacks, a favorite blanket and a few other misc items. It never fails to amaze Jeff & I what a great little boy we have.

As I am typing this, Michael and Daddy are pitching a tent in the living room to have a sleepover they have been planning all week. But, considering Michael took a 2 hour nap at the hospital and slept for the 3+ hour ride home, I am not sure how much sleeping he will be doing! I hope he does though since Jeff worked last night and we left as soon as he got home this morning. So, he is going on 36 sleepless hours with only a couple of cat naps.

Keep your fingers crossed that the nurses' attempts to make Michael more comfortable work. I will post in a couple of days and let everyone know how he is doing. Keep Michael in your thoughts and prayers, JoAnne

Today was a great day...

Michael is feeling much better today and even went to daycare and school. Today is the first day since Friday that he has had any appetite at all. The nausea and vomiting stopped yesterday morning but he still had terrible jaw pain so he still wasn't able to eat much until lunchtime today. It's encouraging that he is back to his old self and we hope that maybe it means his body is adjusting and that the next treatment won't be as rough on him. His nurse practitioner said they are going to add a second anti-nausea medicine to Micheal's treatment this week to try to help him. We have to be in Rochester this Friday at 11 am for his second treatment. I will post to let everyone know how he does. Please keep Michael in your thoughts and prayers, JoAnne.

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