Andrew had his second radiation treatment yesterday, and he did very well.  He is starting to have some side-effects, he is losing his appetite and is getting more fatigued.  He has minimal pain, but enough to make him a little cranky.  He is still doing great trying to be independent getting himself dressed, helping with his chores and has started doing more school work and reading books.  He is more talkative in the morning and less after his treatment, but he has gotten back his sense of humor.

Andrew's Scar

Andrew doing his radiation

Right after radiation

Andrew has had an eventful week.  He went to visit his classmates on Tuesday, which was a very fun experience.  He answered all the questions they had about the surgury and numerous questions about hospital food.  He is excited to visit again for his birthday next week.  He also started his radiation yesterday and will be having it every weekday for the next 6 weeks.  It went very well and so far there have not been any negative side-effects, which we are very grateful for.  He will be starting chemo next Wednesday and every other Wednesday through the 6 weeks.  He will be attending the St. Lukes Hospital School starting next week too, and Andrew is anxious to get back to learning.  If everything goes well today and tomorrow he will do some trunk or treating and I will post pictures this weekend.

This last week had ups and downs.  Andrew has gotten stronger is able to walk around the house but has to hold on to the walls for support. He has also had some short term memory loss, but the doctor said that it is pretty common for this to take place when a tumor of his size is removed.  It is also probably contributing to his decreased speech.

Andrew with his googly eye - it really does help him see better

On Friday he prepared for his radiation, and this was not a fun experience!  He needed to have a mask mold made of his face, which I am sure to most people would not be hard, however, he had to have his chin up very high which put stress on his neck muscles as well as his incision.  We had to repeat the process to get him just right for his CT scan, and then he had to get 4 tattoos to ensure proper alignment for the future scans.  Not a happy camper. . . But he started physical therapy as well on Friday and had a lot of fun with it while wearing his Halloween googly eye glasses.

Andrew showing off his tattoo, it isn't that big, we just didn't wipe off the marker

He also had his port accessed for the second time, which definitely went better than the first, but was still pretty painful for him.  However, he has begun to talk a little more and requested Chinese food after his port access and who could say no to that?

Andrew and Fire Fighters

Saturday we had another small army come to help paint and do more clean up.  We also had a visit from Boise Fire Fighters from Station 7.  They brought 3 fire engines and used their tools to remove a cement step from the back room that was enclosed by yet another fabulous fireman and his son.

Andrew in bucket 65 feet high!

Then they took Andrew and family up in the bucket to catch a view of Boise from 65 feet!  It was a wonderful experience and he had a great time.  He also went to a Halloween Party that night and dressed up as a pirate, he was pretty successful at obtaining and consuming a lot of candy before nights end.  Sunday he crashed all day.  He are hoping he is strong enough to visit his class before he starts his radiation treatments on Wednesday.  Thank you again for prayers and words of support.

Andrew and the whole Fire Crew

Saturday we had a small army over to help us with our house chores and boy did they do an amazing job! Andrew came out to get some fresh air too. He is able to get around much better and is trying to not wear the eye patch almost at all. He was feeling so good he wanted to go to one last soccer game of his mom’s before treatment and what a game it was! Mom had her jaw dislocated by the soccer ball – bummer!!! Now Andrew and mom are both having issues eating heehee.

Sunday Andrew is ready to run a marathon! He is so steady that he almost does not need the walker, but we are still trying to have him use it. He has not had the patch on at all, but sure does wink a lot. He also got a hair cut and is pretty happy that his showers are able to be shortened along with his hair. He has been laughing so much with his cousins that we left with him wearing most of his cake from dinner.

First off, in case you haven’t heard the awesome news, the spinal tap, marrow test and MRI all showed the same thing, the tumor didn’t spread!!! This is the best news we could have hoped for. The pathology test showed the tumor was a Desmoplastic Medulloblastoma, which is just a sub-category of the previously mentioned Medulloblastoma, it was not metastatic. To be honest as I’m writing this I don’t know if all Desmoplastic aren’t metastatic, or just in some cases like Andrew’s. Either way, it’s great news for Andrew.

Treatment is scheduled to start early in the week of October 27th. He starts with 6 weeks of radiation and chemo. During this time he’ll be in the hospital for treatment, but allowed to go home at night. After the first ix weeks he’ll be given a 3 week break before he starts the full chemo treatment. We’re working on a schedule to let people know when they can help, and should have something up here in a few days.

Chemo treatment will be 3 days in the hospital, follow by 3 weeks home. This will most likely be the much harder part of the treatment, but were going to worry about the radiation now, and start planing for Chemo when it gets closer.

Did I mention that Andrew got a Wii? Well, he did, and he’s super excited about it. His motor skills are still really far off from where they started, but were hoping that between physical therapy and Wii Sports he’ll start getting back a lot more control.

Hope to post more photos and stories soon. Thank you to everyone who’s signed the guest book, sent cards and letters and generally had Andrew in their thoughts and prayers.

Andrew is home!!!

We have finally come home!!  After his CAT scan on Tuesday afternoon Andrew was discharged and could not have been happier to be home.  He has stopped communicating with grunts rather than words and loves running (okay scooting with the walker) all over the house, usually in pursuit of food.  He made a gingerbread house today, and was back to himself making jokes.  He had a hearing test and his MRI today.  We will have a meeting with his oncologist to go over all the findings from these last tests on tomorrow.

Momma and Andrew taking a stroll

Andrew and Dr. Brown his pediatrian who made the diagnosis

Andrew and his favorite nurse Kelly

Andrew doing homework - even more than I asked him too!!!

Andrew had a bit of a rough patch at the end of this week – spiking fevers among other things – but he’s stable again and doing much better.  He’s got his appetite back and is eating like a champ…or three!  His strength is slowly returning, and he’s up and around with the help of his trusty walker.  We’re seeing some improvement with his eyes, but he’s still wearing the pirate patch most of the time.

With a little determination and patience he was able to put together his lego airplane

Andrew with his favorite neurologist, Dr. Churney

Andrew with Toby and my friend from work Kathy Buchanan

Creepy clowns creepy clowns. . .

Andrew being a mad scientist

Andrew with his cousins imitating Napoleon Dynamite with purple surgical gloves

Amazing what difference a couple of days can make!  Andrew has been up and walking a few times, first with a walker, and a today a little without!  He’s surprisingly steady without the walker.  Walked right over and gave his mom a huge hug…SO cute!

Taking a stroll with Mom

He’s still getting low grade fevers, but doing well despite.  His eyes are still a bit wonky, so he’s wearing a patch most of the time.  Our own little pirate!  He’s got a killer reverse mohawk going on as well!

Andrew the Pirate and his cousin Tamra with a very accurate T-Shirt!

We’ve had verbal confirmation that the tumor was, in fact, meduloblastoma.  They still have some more tests to do as they continue to figure out more about the type of meduloblastoma and if it has spread at all.   He has a spinal tap, bone scan and hearing test coming up.  More updates to come as we know more.

Enjoying some tunes.

Andrew had a fever last night, but is feeling better today. He’s got a yarrr new style, but we’ll wait for photos to unveil it. Still no word back from the pathologist, but they’re starting to plan ahead anyway. We’ll get the word out as soon as we get results later this week.

Andrew’s next MRI, spinal tap and marrow test are tentatively scheduled for October 13th. They’re looking to start treatment the last week in October or first week in November. The way things have gone so far, there’s a decent chance this will change.

We’re putting together a new site to track Andrew’s progress, and will post details as soon as its up. Caringbridge is a great resource, but this will give us more flexibility to post text, photos and even video.

Another update soon!

Andrew singing Beauteous in his (drug induced) sleep. It’s from a cartoon show, you can see the original clip here: youtube.com/watch?v=oocvSwQWtLQ