Monday, June 30, 2008

More Blessings!

Yet another miracle this week! Yesterday morning, they let Matt go home. He is doing wonderfully. We were able to help him shower on Saturday - isn't it amazing how much better you feel when you are clean?!? For his last Craniotomy we requested they shave his entire head. It was very convenient to keep his incision clean. This time we sort of were thrown into the whole major surgery thing rather quickly, so he kept his hair. It was so SKUNKY! They use this gunk to slick the hair away form the incision during surgery, plus they clean the site well with iodine, plus they put numbing cream on the drain site, plus he had 2 IV's in his head during surgery, plus he had several circles shaved off his head for the 'markers'. His hair was disgusting! It was so nice to finally wash everything out (very gently, of course!) When we rinsed it the first time, the water was rust colored from all the crud in his hair - YUCK!

That was a little tangent - sorry! So, Saturday Matt really did well. He was up and walking by himself, with no support! He was using the restroom, eating well, and just amazing everyone around him with how well he was feeling. In fact, I bought him a 300 page book the day before his surgery. He read a bit that morning while we were checking into surgery. He read THE REST OF THE BOOK in the 3 other days he was inpatient! On our first walk after surgery, Matt was in a wheelchair and we were taking him out onto the patio for some fresh air. Matt was reading his book while we walked the halls and we passed the Neurosurgery team as they were doing their rounds. They were all shocked that Matt was reading - it was pretty funny!

So we are home, just letting Matt rest and get better through this week. He is feeling very well and I keep having to force him to lie down and rest. Now we wait to figure out the next step in our 'plan'. Hopefully it will involve continuing chemotherapy since it seems like that is working. Then, maybe, we can keep radiation 'in our pocket' until we absolutely have to use it.

Thursday, June 26, 2008


This morning Matt had his MRI. We are so thrilled that Dr.Walker was able to remove a LOT of his tumor! I don't have a percentage or anything but I did see the scans. The huge balloon looking portion of it is totally gone. The ventricles are all clear, and about half of the white solid tumor is gone, as well. Dr.Walker was, again, just overjoyed. You could tell he was pretty darn thrilled with himself. Today he was excited to see just how much of it was gone and also to see that there was almost no bleeding. Bleeding is one serious complication that we are happy to have avoided, particularly given Matt's history of his tumor bleeding.

So, of course I wondered if it might be possible to do yet another craniotomy on the left side to see if we could get out the other half of the tumor! Dr.Walker didn't dismiss the idea, which I see as positive! Of course we aren't going to do it tomorrow, or anything, but in the future it might be a possibility. Total resection (removal) of the tumor is like a dream I hadn't ever dared to dream. Now the possibiliites for Matt's complete recovery and healing seem endless!


Wednesday, June 25, 2008

The best laid plans.......

Today, Matthew was scheduled for a minor (well, relatively minor - I'm not sure any type of brain surgery is minor!) surgical procedure. An Ommaya reservoir was going to be implanted so that the cystic portion of Matt's tumor could be drained. The surgery was scheduled for 1 hour and then we were going to be allowed to go home 24-48 hours after surgery. Warren, Matt, Jake and I headed down to Salt Lake yesterday to meet with the neurosurgeon and also have an oncology clinic visit. We had a nice evening and stayed the night with Carolyn and Lee so we could be to the hospital at 6:30 a.m. this morning.

We arrived at the hospital, Matt had a CT scan and was whisked into surgery rather quickly. We were in the waiting room at 8:30 - which was a first, for sure! We were happy and not surprised when Dr.Walker (our neurosurgeon) showed up around 9:30. We thought the surgery was finished. Well, the news was not exactly what we had anticipated! Apparently, when Dr.Walker went to insert the catheter portion of the reservoir, the cyst collapsed. This was not a dangerous complication or anything, it just meant that the surgery didn't work and that the cyst would continue to fill with fluid and Matt's ventricles would continue to be blocked, putting him at a great risk for hydrocephalus.

Dr. Walker gave us 3 options. We could either end the surgery then, try putting a larger scope in the hole Dr.Walker had already made, or perform a full craniotomy. It was a rush of emotion as we hurriedly weighed the options and ultimately decided that the craniotomy was the thing we would do. Dr. Walker was leaning that way, and I really respect his opinion! He also hoped that we might be able to remove a bit more tumor.

Matthew was in surgery for another SIX hours. Let me tell you that if we had known what today was going to turn out like, we certainly wouldn't have brought our 8 month old baby! Jake is a trooper and an absolute doll, but he doesn't 'do' waiting rooms for hours on end!

When Dr. Walker finally came out after surgery, he was practically beaming. From this different angle (Matt's first incision was right across the front of his head. This new incision begins on the right side of his incision - your left - and continues on to the back of his head, making almost a 90 degree angle with the first incision) Dr. Walker was able to completely remove the cyst, and also remove a large portion of tumor! We were beyond thrilled and Warren said, "I have never felt so happy in this place!" I totally felt the same way! This gives us a large chunk of tumor to send to different pathologists, and hopefully the tumor will be easier to measure without the large cyst making the MRI's difficult to read. Dr. Walker also said that the cyst was much more tumor than it appeared on the MRI. I am so happy they were able to remove so much!

Tomorrow will be an exciting day because Matt has an MRI. We will be able to get a good look at exactly how much of the tumor Dr.Walker was able to remove.

Tonight, Matt is doing well. When we first went into the PICU to see him, I asked him how he felt. He opened his eyes and said with a clear, strong voice, "I feel like crud!" It made me laugh.

So, now we work through our modified plan. Our 1 hour surgery + 1-2 day hospital stay has morphed into a 7 hour surgery + 1-2 days in ICU with 5-8 days in the hospital after that! However, if this surgery resulted in a significant resection, it is totally worth it!

Saturday, June 21, 2008

Just Swingin'

Jake's first time in a swing! He was so sweet - making the CUTEST laugh/shriek/giggle sound. He is becoming so much fun!

Thursday, June 19, 2008

Too much STUFF!

So, I am feeling a little bit overwhelmed at the amount of updating I have to do on my blog! Summer is in full swing and we've been busy.

*We spent a weekend helping Warren's mother get some stuff cleaned out of her house.

*We went to LAGOON with some friends. The boys loved it and it turned out to be a fantastic time to go.

*Warren's mother got MARRIED!! She was widowed almost 7 years ago and we are so thrilled for her and her new husband. They seem very well matched and very happy.

*We went on a family vacation to Deer Valley. It was just our speed, we hung out together, played board games, saw the Park City sites, ate junk food, swam in the hot tub in our condo, and slept in. It was a successful trip.

*We travelled back to Idaho after the wedding and our Deer Valley trip to be with Warren's mom for her reception.

*Our landscaping contractor finally started our landscaping - a week or two and we will have real live GRASS!

*Matthew and William are currently at 'Camp Hobe' an amazing camp for children with cancer and their siblings (I linked to the page with the video - it's worth a watch!)

*Matt had an MRI and we learned that the solid portion of his tumor appears stable, but the cystic component has grown.

*We received a call from the neurosurgeon's office yesterday, letting us know that the O.R. has been reserved for Matt for next Wednesday (the 25th) We don't know all the details yet, but it looks like Matt will need a shunt inserted to help drain the fluid through his 3rd ventricle.

For having nothing scheduled so far for our summer, it's been pretty full and is almost 1/2 over! How does winter go so slow and summer go SO FAST?!? I will try to post some photos of our adventures soon!