Friday, August 29, 2008

There's no place like home...

They released Michael this afternoon and we are happily home. We found out the reason they didn't let us come home is because when they took his vitals during the night Wednesday, Michael had a fever for a while. I'm happy to say that they changed their mind about the home infusion, also. So, we're home and life can get back to normal.

Michael hadn't really recovered from the stomach bug he had the weekend of the wedding. Getting lots of fluids through an IV was good for Michael. He is back to his old self.

Please keep Michael in your thoughts and prayers, JoAnne.

Thursday, August 28, 2008

We're still in the hospital...

This morning we thought we were going home but, unfortunately, it's almost bedtime and we are still here. Michael's counts were 500 yesterday (up from 400 the day before). And, he hadn't had a fever in over 24 hours so this morning they said we could go home if his counts were still good. We got psyched and waited for his bloodwork to come back but we got bad news. Michael's counts have dropped to 320 so we are here until at least tomorrow morning.

The other news is when we go home, Michael will still have an IV infusion for another 10 days. There will be a company that will come to the house to show us what to do. The doctor says Michael can still go to school next week so keep your fingers crossed.

I will update again tomorrow. Please keep Michael in your thoughts and prayers, JoAnne.

Wednesday, August 27, 2008

We just talked to Dr. Kennedy...

We just talked to Dr. Kennedy and she said Michael is doing better but that they are going to keep him until tomorrow. His counts have started to come up and his fever is gone but she wants to give the blood cultures 24 hours to make sure there aren't any nasty bugs in Michael's blood. So, now we wait.

I am happy to report that Michael is acting like he feels better. His overall color has improved and his eyes aren't black anymore. He ate a little cereal and some peaches for breakfast. It's not much but that is more than he has eaten the last couple of days. He woke up cranky but then he heard Britney (the child life specialist from unit 5C) was on the floor and that brought a smile to his face. Britney said she would tell Jen (the nurse Michael has a little crush on) that Michael was here (on the seventh floor) and that she was sure if Jen got a chance that she would come up to see Michael. That made his smile even brighter. He insisted on getting dressed and now we are down in the day room where he is playing games and coloring with Daddy while I type this.

Jenny and Ralph are on the last day of their honeymoon in Peurto Rico. I was hoping Jenny wouldn't check the blog until she got home but she did and saw that Michael was in the hospital, so she called. Unfortunately, she called while Michael was still cranky and not in the mood to talk to her but I was glad to hear from her.

I will post again when I get a chance. Please keep Michael in your thoughts and prayers, JoAnne.

Update - Just as I was getting ready to post this, Jen came to see Michael for a minute and I think that is the best medicine he's had!

Tuesday, August 26, 2008

This post is coming to you remotely...

We've had a bad 24 hours - I am posting this from Michael's hospital room in Syracuse tonight. His fever spiked to 103 degrees about 2:30am this morning. About the same time, he started coughing and "couldn't breathe". So, as my panic level was rising and I was considering calling 911, he settled down and the coughing subsided. We gave him some Tylenol and after a while his temperature came back down to 99 degrees. He slept very fitfully for the rest of the night (and Mom and Dad didn't sleep at all.)

First thing this morning we called Dr. Swan's office (Michael's pediatrician) and took him to see her around 10:30am. She didn't like the way he looked so she ordered some tests. He had black circles under his eyes, his color was terrible and as she said, "Michael's spark just wasn't there". So we took him to the hospital to have some blood work done and a chest x-ray. The chest x-ray ruled out pneumonia but the blood work showed he was fighting an unknown virus and he had become severely neutropenic. He is also dehydrated.

Dr. Swan called Dr. Kennedy and they decided that Michael needed to be admitted so that he could receive an antibiotic and some fluids through his port. Both doctors agreed Syracuse would be better for him than Watertown. When they admitted him, the nurses took some blood to do some blood cultures to see if they can identify the virus he is fighting. So, we are here until either: 1) Michael's fever goes away, 2) his ANC stops dropping and climbs back over 500 (currently in the 400's), or 3) they identify the virus and come up with a sure fire plan to treat him at home.

I will post when I can to keep everyone updated. In the meantime, please say an extra prayer for Michael tonight, JoAnne.

Sunday, August 24, 2008

Come with us to Legoland...

Michael has is still fighting whatever mysterious virus he has had for the last couple of days. His fever has been spiking and receding all weekend. Let's hope he gets over this very soon. While we wait for our little boy to mend, we'll continue our California adventure with a visit to Legoland.

You are fortunate that by the time you scroll down this page a little ways, you will be transported to Legoland. For us, a 45 minute drive took five and a half hours. It seems there was a three car accident that caused a four acre brush fire that turned I-5 into a parking lot for most of the day. We discussed turning around and trying Legoland on Friday, but we couldn't even get to an exit to turn around. So, we kept going and finally arrived around 2pm and we were all cranky and hungry. So, we headed to the nearest food vendor inside the park and grabbed some lunch. Then we began our day of fun.

The first area we came to was Explore Village. The rides in this area were pretty tame and geared for the younger crowd. You would think that this would be the part of the park that would be perfect for Michael but you would be wrong (as you will see).

So we moved along to Fun Town. In this part of the park, they had a Fire Academy that was a big hit with our crew.

There were 4 fire trucks in a row, each manned by a different, 4 person team. Our team was Daddy, Jenny, Brian and Michael. They raced the other teams to the "fire" by manually pumping their trucks. Then each team jumped off their trucks and manned their fire hoses. Again, they manually pumped the water and tried to hit the fire targets in the building in front of them. (You can see Jeff and Brian above doing the pumping while Jenny and Michael aimed the fire hoses.) The first team to put our their pretend fire, won. And although our gang gave it all and had fun, unfortunately they didn't win.

So, we went on a little spin... a helicopter... an airplane...

...and in a little boat.

I think that smile says it all!

After we finished visiting all of the attractions in Fun Town, we moved on to Pirates Shores. This part of the park was a blast...

...and WET!!

There was an attraction that was full of water - you could run under it, through it and ... could even spray it at the people watching dryly from the sidelines.

Even the rides were designed around water...

...and the spectators here got wet, too.

Michael stopped to play a carnival game and won a pirate duck (who is now added to the menagerie that sleeps with him every night.)

On our way to Castle Hill, the kids took a ride on a swinging pirate ship.

This is when we started to realize Michael liked the more adventurous rides.

In this part of the park, there were a couple of roller coasters...

...a dragon or two (this one is made entirely out of Legos)...

...and some wild rides. This ride was like nothing I had ever seen before. It took the riders and flipped them back and forth, to and fro, upside-down and right side-up - and Michael loved it! Before you got on the ride, you picked the intensity level you wanted (between 1 and 5). Michael and Brian did level 1 so they weren't tossed around as much as some of the other riders.

Next, Michael mounted up and...

...and participated in a little jousting (again, this knight is made entirely of Legos) .

And, Sir Michael had a ball.

Then, we made our way around to the Land of Adventure. As I am sure you can tell by now, there were a lot of awesome Lego creations throughout the park.

There were lots of fun rides in this section, too. But none of them thrilled Michael as much as...


Well, I have a little bit more of Legoland to share with you, but it is storming pretty good here and our internet connection keeps fading in and out. So I think I will end for now and pick up here next time when we will finish Legoland and then head for the beach.

Please keep Michael in your thoughts and prayers, JoAnne

Friday, August 22, 2008

Michael is doing better today...

Michael had a very restless night. As long as we kept giving him Tylenol every 4 hours, his fever stayed the same (at least it didn't go up) and he was a little more comfortable. Then, he woke up very early this morning and complained he was hungry. But, he lost his appetite in the short time it took me to fix him a bowl of cereal. So, I gave him some more Tylenol to get his temperature back down and then we got ready to head to chemo.

Michael fell asleep as soon as we got in the car and quietly slept all the way to Syracuse. By the time we got to the hospital, his fever had broken and he was feeling much better. We stopped in the cafeteria and picked up a snack before heading up to the fifth floor. Dr. Kennedy checked Michael over good and then check his blood counts. She didn't find anything seriously wrong and thought by the looks of his white cells, that Michael was just fighting a little viral infection.

So, he received his chemo (which he slept through as usual) and then we headed home. It is only 6:30pm and he has already asked to go to bed, so I would say he is still a little under the weather but on the mend. Hopefully, he will get a good night's sleep and be back to 100% by morning.

Please keep Michael in your thoughts and prayers, JoAnne

Thursday, August 21, 2008

Michael is down with a bug...

Michael came home early from daycare today not feeling well and with a low-grade fever. His babysitter, Patti, said he alternated between complaining his head hurt and his stomach hurt. He's pretty cranky and has no appetite. Let's hope this is a run of the mill illness and not a sign that his counts are out of whack.

I spoke with Michael's favorite nurse, Jen, and she said Dr. Kennedy wants us to give him Tylenol every 4 hours and they will see us tomorrow. She also said if his fever continues to rise on the Tylenol to take him to the Emergency Room tonight. Keep your fingers crossed that that doesn't happen.

If you remember back in May, Michael was given the opportunity to spend the day playing on "big boy toys". Last night I was playing around with the pictures that Jenny and Brian took that day and created a keepsake book. If you would like to take a peek, you can check it out here. I'm pretty happy with the way it turned out and I know that Michael will enjoy it for many years to come.

Please keep Michael in your thoughts and prayers, JoAnne

It's been a year...

August 21, 2007

It's hard to believe but - It was a year ago today that we handed our little boy over to the surgical team so that they could cut open his precious little head and try to remove the mass recently discovered growing in his brain. Leaving him in that operating room and walking alone back to the waiting room, knowing that he would be forever changed and scarred, was the hardest thing I have ever had to do. And life has been a roller coaster ride since.

If you have been with us since the beginning, you may remember that we were initially told that they were able to remove the whole tumor. And later we discovered that there was a miscommunication between Michael's doctors and that there was a small portion left behind. Then we were given the diagnosis of Ganglioglioma (which is typically a relatively non-aggressive type of tumor) only to be told later that it was actually an Astrocytoma (which can sometimes turn aggressive). The good news here is that at least it is still classified as a Grade II and therefore considered benign.

August 2007

You may also recall that initially we were told that Michael would not need anymore treatments, except for possibly another surgery "someday" to remove the remaining tumor. Three months later, we learned that the tumor was growing and Michael would have to begin intensive chemotherapy. And the decisions (even the little ones) that we have had to make since last summer have changed us forever.

We had to decide whether to go with a chemo treatment that has a slightly better success rate but can cause secondary cancers or to go with the good but slightly less successful treatment with fewer side effects (we chose the latter). We also had to decide whether to surgically "implant " a foreign object in Michael's carotid artery to receive those treatments or to choose a less invasive port that was easier to damage (we chose the former). I can say with confidence, that we have made the right choices for Michael so far.

September 2007

The last low point in our long journey was last spring when we learned that there was actually a larger portion of the tumor remaining than we thought. But, I am happy to say that at this time, we are in a high point emotionally after learning last month that the chemo seems to be working and the tumor appears to be shrinking.

I was recently reading some of my older posts and it feels like they were written by somebody else entirely, a woman that is a stranger to me now. The new terminology that I was using so uncomfortably is now a second language to me. Things that were foreign to me a year ago, now seem like they have always been a part of my life. Last week at chemo, the nurses couldn't respond right away to the alarm on Michael's IV pump that signals a medication is done and told me I could turn it off -and I actually could.

October 2007

We have had a lot of amazing people enter our lives - doctors, nurses, volunteers from CompassionNet and Make-A-Wish and many, many strangers that just wanted to bring a smile to our little boy's face. We have been fortunate enough to see the generous, caring, unselfish side of people - family, friends and strangers alike. It seems whenever we have needed something - whether it was emotionally, physically or financially - there has been someone right there, ready and eager to help. And we thank each and every one of you from the bottom of our hearts.

As we go forward down this path that fate has led us to, I have been asking myself "If I could look into a crystal ball and see what the future holds for us, would I want to know?" The answer may surprise you - but no, I wouldn't. If I knew that the future would hold only good things for us, I would look in a second. But, with the chance (however slim) that there may be heartache or disappointment at some point in the future, I think I will just take each day as they come and enjoy them to the absolute fullest. And so, that is where we are at this point of our lives. Living each day as they come and not worrying about tomorrow until tomorrow.

November 2007

I hope you will continue along with us and - as always - please keep Michael in your thoughts and prayers, JoAnne.

Sunday, August 17, 2008

This week has been better than the last...

Chemo went well on Friday. Michael's counts were good, he received his pre-meds and promptly fell asleep and then the chemo was administered with no problems. I talked to Dr. Kennedy about the pain in Michael's legs last week and she checked his gait to make sure he wasn't having any problems with balance. Thankfully he did fine with the tests. He has also felt good since Friday. There hasn't been any nausea and his appetite has been good. It looks like it is the first treatment after his two week break that are the worst for him.

Please keep Michael in your thoughts and prayers, JoAnne.

Thursday, August 14, 2008

Now back to southern California...

Michael has been feeling better the last couple of days. He has been eating well, sleeping soundly and playing without any apparent pain. Let's hope that tomorrow's treatment doesn't awaken the nasty side effects again.

In the meantime, let's continue our Make-A-Wish trip with our Wednesday visits to Disneyland and Disney's California Adventure.

Again, we slept until Michael woke up naturally and then headed downstairs to have a light breakfast. Then we started the morning on the monorail on our way back to Disneyland for another day of sightseeing and fun.

Once inside the gates, we took the Disneyland Railroad back to where we had ended our day the night before...

New Orleans Square.

Our first stop was another ride on Pirates of the Caribbean (a favorite for all of us). Then after a stroll to check out the sights and sounds of this part of the park, we hopped aboard a raft for our journey to ...

The Pirate's Lair on Tom Sawyer Island.

Michael had a ball on the island - visiting with pirates and listening to music...

climbing in tree houses, scrambling across rope bridges and exploring in caves...

and just hanging out with his brother (and sister of course).

We decided not to go on Mark Twain's Riverboat...

Or the Sailing Ship Columbia. There was no shade on these rides and Michael seemed to feel a lot better if we kept him out of the direct sun as much as possible.

So, we took the train over to Fantasyland to spend a little time. We checked out some of Disneyland's original rides like the Mad Hatter Tea Party, Mr. Toad's Wild Ride, Peter Pan's Flight, Pinocchio's Daring Journey, Snow White's Scary Adventure (It's a Small World was closed for renovations) and...

King Arthur Carousel. After a while...

Michael took a little nap while the adults checked out some attractions that our little buddy wasn't interested in.

Then we grabbed a quick bite to eat. That's one of the best hot dogs in the world that Michael is eating.

He was feeling much better by this day so we were able to do and see a lot more than we had the previous two days. We rode the Disneyland Railroad to make our way around the park - there was a dinosaur display that Michael enjoyed seeing (again and again).

And after a trip on the Jungle Cruise, we said farewell to Disneyland.

BTW - you may have noticed the button Jenny is wearing in the picture above - we all wore those during our time at Disney's parks. They had a picture of Genie from Aladdin (Disney's Make-A-Wish ambassador) on them and identified us to park staff as a Make-A-Wish family.

And the blue lanyard around Brian's neck has souvenir pins on it. When we checked into our hotel, they gave Michael six plain pins that he could trade for better pins with any Disney cast member wearing a lanyard. He had fun trading the pins and then we purchased additional pins for all of our favorite rides. Now Michael has a nice keepsake that will always remind him (and us) of the fun we had.

After a short swim back at our hotel, we walked over to Disney's California Adventure one last time.

The first ride we came across was the the Grizzly River Run. This ride was awesome!! It is a white water raft ride that rises and drops, swirls and splashes. We were all soaking wet when we got off the ride but it was worth it. I think this was everyone's favorite ride of the entire week.

We checked out the parts of the park that we missed the day before. Like the Hollywood Pictures Backlot where we enjoyed the Monsters Inc. ride. Another section we hadn't explored was...

"a bug's land". This part of the park was so much fun. Everything was designed to look like you were a tiny bug surrounded by everyday human items. Like...

this bench that Jeff was resting on. It looked like it was made out of old, stained Popsicle sticks.

And the lights were provided by fireflies. There was a canopy of giant four leaf clovers that shaded you from the hot sun. And the "tent" over one of the rides looked like a giant umbrella (giant to a bug's viewpoint anyway). Even one of the rides was made of leaves and old, discarded food cartons. The creative genius in this section was amazing.

It was getting late and starting to get dark but the kids had a ball...

spinning and twirling in a friendly ladybug...

driving and...

and bumping in little caterpillars (to just name a few of the attractions).

We were still in "a bug's land" about ten minutes before the park closed and we all wanted to end our night with the Grizzly River Run one last time. So we made a mad dash from one side of the park to the other and were one of the last rafts to go out on an adventure that night. And we had even more fun than the first time!

After we got back to the hotel, we put Michael to bed and Jenny and Brian stayed with him while Jeff and I spent a little time back at Disneyland (which is open later than Disney's California Adventure). We just walked around, watched the fireworks and enjoyed the Fantasmic laser show. It was a relaxing end to an enjoyable day.

There are just two days of adventure left of our trip. Next time we will check out Legoland.

Keep your fingers crossed that Michael does well with chemo tomorrow. And, please keep him in your thoughts and prayers, JoAnne.