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.

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.

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.

The last couple of days...

As you know, we have been preparing for and celebrating the wedding of Michael's big sister and new brother-in-law that took place this past Saturday.

The blushing bride and her smiling groom - Jenny and Ralph.

Michael wore a tuxedo like those worn by the groomsmen. When he tried it on at the rental store, he looked in the mirror and said "I'm handsome. Aren't I, Mama?"

"Yes, you are little buddy."

Then Michael and his big brother walked their beautiful sister down the aisle. It was a perfect day in a romantic setting surrounded by those that mean the most to us.

Michael was great during the wedding and reception but unfortunately, that is the only time since last Friday that he felt well. As is usual with the first week back to chemo after a break, Michael was terribly sick. When he woke up after his treatment, he was "out of it" a little more than usual. And he didn't have much of an appetite all evening - eating only a couple of bites of pizza and an ice cream cone. Then he woke up around 2am and started throwing up and it didn't let up until after 8am, when he was finally able to keep down some Zofran.

He felt good for the entire day but still didn't eat much. And he drank even less. Since he didn't get much sleep Friday night, he asked to go to bed pretty early on Saturday and he slept peacefully all night. Then on Sunday morning the vomiting started again. And he had severe pains in his stomach that made him curl up into a ball and cry out in pain.

All of the way home he alternated between getting sick and taking little catnaps. And it didn't get any better after we got home. Sunday night, he slept very restlessly and he still couldn't keep anything down on Monday. His eyes had black circles under them. His little lips were all cracked and his skin had a gray pallor to it. I was really starting to worry since he hadn't kept anything down for 3 days - even clear liquids.

Finally on Monday afternoon, the stomach pains subsided. He was able to eat a light lunch and, more importantly, was drinking some liquids. By today his appetite was back to normal and he went back to daycare. But tonight, he became very frustrated playing with his toys and began throwing a full blown temper tantrum. When he calmed down, I asked him to talk to me and tell me what was wrong. He started crying and said he couldn't peddle his bike because his legs hurt "real bad". And then he said that sometimes his wrists hurt, too. I think this is a new side effect of the Vincristine and we can only hope it will subside quickly.

It's funny - when we were at the wedding, I was watching Michael and thought that if you didn't know everything that was going on, you would think he was a typical, active, healthy five year old. But then in the blink of an eye, I am reminded that there is nothing typical about our life these days. I think this is the sickest he has been since he started the maintenance phase of chemo. I wonder if that has anything to do with Michael receiving a full dose of Carbo last Friday after receiving a reduced dosage last time around.

Please keep Michael in your thoughts and prayers, JoAnne

(Next time - more of our Make-A-Wish trip.)

On to Disney's California Adventure...

Sorry about the delay in posting but we have been in wedding mode around here (Jenny's wedding is this Saturday). But I have finally downloaded all our vacation pictures and am ready to continue our tour.

Since Michael wasn't feeling well on Monday, we let him sleep as late as he wanted on Tuesday. We got up around 9 am, grabbed a quick breakfast at the hotel and headed to Disney's California Adventure. Disney guests could enter this park through a private entrance in the Disney hotel across the street from ours so we were there in no time.

We had an appointment at 11 am so we only had time to check out one ride before meeting a special friend (more on that in a moment). We had seen Soarin' Over California showcased on one of the shows about Disney on the Travel Channel, so we decided to check it out first. We weren't disappointed.

There were several rows of seats in front of a panoramic screen. When the ride starts, each row of seats was lifted up and forward so that they were one on top of each other and you had an unobstructed view of the screen. Then the video started. You actually felt like you were flying over California on a hang glider. There was even "smells' to go along with the video (for instance you could smell oranges when you soared over the orange groves). They also moved the seats and a gentle breeze blew when appropriate. It was awesome.

Next, we found our way to guest services to wait for a very special person:

Handy Manny!!

He and Michael had fun playing tag and tickling each other for about half an hour. Did you notice the matching outfits (except Michael left his toolbelt at home)? Manny did! What a coincidence.

Michael was a Handy Manny fan even before he was a Darby fan so he really enjoyed this time.

Then Manny escorted Michael to a very special show. (BTW - what you don't see in this picture is all the kids running after Manny, trying to get his attention and he only had time for Michael. You can just imagine how special our little boy felt!)

This is Darby, Pooh and Tigger in Disney Playhouse Live, the show Manny escorted us to. We even had front row seats. The show features the characters from Mickey Mouse Clubhouse, Handy Manny, Little Einsteins and My Friends Tigger and Pooh, all of Michael's favorites. Unfortunately they were puppets and this is as close as we got to Darby all week. (But I have good news on that front that I will share at the end of this post.)

When the show was over, we headed to the part of the park called Paradise Pier. It is set up like an old fashioned boardwalk and was where we had some of the best times of the week.

You can see this part of the park from our hotel (in fact that is the building in the background above) so Michael was anxious to visit since we checked in Sunday night.

And the first ride he wanted to go on was the Ferris wheel - so that is where we headed first. Now, I want you to notice that this Ferris wheel is not your traditional Ferris wheel. Not only does it go around but the cars also slide in and out as you go around.

Michael thought this ride was awesome and wanted to do it again. The only problem is Jeff, Jenny and Brian were all sure they were going to die and wouldn't go on it again. (As for me - I wisely kept my feet on the ground.)

Then we checked out some of the other attractions in the area like Toy Story Midway Mania...

and King Triton's Carousel...

and the S.S. Rustworthy...

where Michael had fun playing in the water.

Next, there were some fun on the Jumpin' Jellyfish...

a quick bite to eat...

and some time on the Redwood Creek Challenge Trail.

And since Michael still wasn't feeling 100%, we spent the hottest part of the afternoon...

playing with some new toys in our air conditioned rooms (this is a replica of Disney's monorail)...

and swimming in the pool.

And then when the temperatures cooled, we took the monorail back to Disneyland to spend the remainder of the evening. On our way back to the hotel late that night, we purchased tickets to visit both parks again on Wednesday, which is where we will go next. (And since these posts take 2.5 - 3 hours each to create, edit and post, and we have a very important wedding in just 5 days, I won't make any promises this time on how soon I will get the next post up. But, I'll try not to make you wait too long.)

Now for our good news - when we got back home I started searching for a way Michael could meet Darby. We had seen a Playhouse Disney Live show last fall in Binghamton that had "live" performers playing the parts. I emailed them and explained the mix up in California and asked if there was anyway Michael could meet and spend time with Darby. They responded that they will do what they could and to have Make-A-Wish contact them with a formal request, which our local chapter was more than happy to do for us. So, I purchased tickets for the September 12th show in Erie, PA and hopefully Michael's dreams will finally come true! I will keep you posted.

Please keep Michael in your thoughts and prayers, JoAnne

P.S. I want to thank Jenny for the new banner at the top of the page - I love it!