Change in plans

Our goal the past few months was to get Shaun strong and healthy enough to endure a potentially life saving surgery. The same surgery he had last May, but with a different chemotherapy agent to try to eradicate all the cancer cells. We've had several set backs due to a bowel obstruction but we always held onto hope that the surgery could still happen. Well, the day before surgery, Shaun went in to the hospital for pre-op stuff when presented with a potential complication. The surgeon ordered a colonoscopy to see whats going on and found regrowth at the original site of Shaun's tumor. It is unclear if the tumor is growing from the outside and creeping into the colon or started again on the inside, but it is causing some bleeding. Based on this and a recent MRI results suggesting a large tumor load in Shaun's abdomen, the surgeon doubted the big life saving surgery would be possible. More likely, he could fix the bowel and leave Shaun with an ostomy bag and wouldn't bother taking out the tumors since it wouldn't cure him. Plus by having surgery, he could actually hurt his chances of going on chemotherapy and shrinking/stabilizing the disease. So with few other options, we chose to go back to chemotherapy. There is a phase II clinical trial opening at the UIC for colon cancer patients but it won't be available for at least a month or two. After discussing it with the oncologists at UIC, they recommended going back on the very first regimen of drugs he was on back in October of 2009. He responded really well to these drugs and didn't have any tumor growth while on them. But, they caused neuropathy in his hands and feet. This was the main reason another course of treatment was chosen last fall that ultimately did not work. So in a week or two, Shaun will go back on FOLFOX with Avastin. We are hoping to tweak it in order to minimize discomfort and inconveniences (pill instead of a pump, lower doses etc.). Shaun has been feeling great lately and even helped Dale paint our kitchen (three times). We want to keep him feeling this good as long as possible. His energy levels keep going up every day and we hope some nice weather will allow us to resume our family weekend outings. Any suggestions on where we should go?

Bryce turns 2

OK, so I'm a little late in posting this. But, here it is!! Bryce turned two on Feb 7th and we celebrated with a little party at the new house. Thank you to all our friends and family who could make it. The kids got to hit a pinata hand made by Jeremiah and Elaine. The super strength pinata withstood a beating by everyone and not until Shaun stepped in, did the goodies fall. Two years in a row now, Bryce rejected birthday cake. Guess we should have tried the ice cream cake on him.

Bryce loves all his new presents like the "new zoo" with mama and baby ape. He likes to make the animals climb the ladder to get to the "tree house". He makes each animal wait their turn in a very orderly line in front of the ladder. He especially likes the fish that pops out of the water feature. Our little boy loves to play and can go from toy to toy and play for hours. Thank you so much for making his life so much fun.

For his second birthday, Bryce also got pictures taken at JC Penney. The photographer did a great job of catching his beautiful smile. The pictures look like they could be for a kindergardener because Bryce looks so old. I hope he slows down and doesn't keep growing up so fast.

https://viewimages.jcpportraits.com/sharealbum/sharealbumlist?rndId=CVIAVQgTWgoPXAYCVwIGB05aCFlWU1RXBFJVRFAJWls4AAMJCAZBWFxfWg==&uId=AAkDAQNEWQ==

Lastly, Shaun and I are up in Milwaukee preparing for his big surgery on Monday. They want to make sure his nutrition levels are high enough to withstand such a big surgery. So he has been challenged with eating as much as possible over the next couple of days without getting sick. So we just talked to his surgeon and he has postponed the surgery for a week. He wants his nutrition levels to be high for at least a week before the big surgery. Any suggestions to keep Shaun from going stir crazy in the hospital for the next couple of weeks would be appreciated.

Blizzard Feb 2011

Well we survived our first blizzard in the new house. Got to use the new shovel Bill got us, maybe a little more than I wanted to. But the drive way is clear!! Bryce had a lot of fun playing in the snow in the front before I shoveled. He even got pulled around in the sled Brian and Caryn gave us until I got too tired. I think the monkey hats from Aunt Linda helped keep us warm and ready to stay out there for hours (ok maybe only 30 minutes). Hope you like the video.

One More Try

Last May, I had a radical procedure done in Milwaukee to remove tumors from the area around my stomach, and then warm chemotherapy was applied directly to the affected area. The doctors did the surgery laproscopically, finding few tumors. Unfortunately, however, the treatment didn't work with the cancer coming back within two months. This was sad news because this treatment represents the one chance for a total cure of the disease. Traditional chemotherapy, if it's the right kind, has the ability to stop the disease from spreading and can kill some of the disease, but eventually it stops working. Not to mention, it's side effects are terrible and get worse as things progress.
I've been going through chemo again since October. We tried a new regimen, but it didn't seem to work, though it did give me a nasty rash, among other things. In November, we switched back to the chemo I was undergoing last year. It turned out to be a difficult transition as my digestive system seemed to slowly shut down. I lost 30 pounds in the weeks after Christmas and spent 9 days in the hospital.
Last week, however, we got a glimmer of hope. My surgeon in Milwaukee said he would like to try surgery again late next month, but this time use a different agent (one that seemingly has worked in me before as part of normal chemo). So, I'm going to go through the big "shake and bake" procedure again next month. This one will be more invasive because there is more disease. But I'm lucky I'm a candidate for the procedure in that the cancer hasn't spread outside the area surrounding the stomach. It's an exciting and scary time. The way things were going, a cure almost seemed out of the question. And, though the odds are very slim that the surgery will provide that cure, it does offer a glimmer of hope. That is really meaningful.
Over the coming weeks, I'm going to try to eat a lot and get back to exercising so that I'm in good shape going into the surgery. We'll need all the help and positive thoughts you can send, especially in the weeks after the surgery when Melissa must become even more of Supermom and Superwife. The amount of suppport we've received over the past few weeks has been amazing! Thanks to everybody, Shaun

Update on Shaun

Well its been a scary couple of weeks, but we think we are over the hump and Shaun is on the mend. The week after Christmas, Shaun went into the hospital because of severe pain that the pain killers could not control. What it turned out to be is the pain killers causing an unbelievably painful side effect which I will call "blockage" to try to keep this clean and not totally disgusting. After lots of time in the hospital with IV fluid and many other drugs and mechanical means to dislodge the "blockage" nothing seemed to be working. Yesterday, Shaun had a procedure to look at the problem with a scope and it was deemed non-obstructed, which is good. Just need some time to heal and let nature take its course. He is back on a regular diet, just taking it easy with more frequent, smaller meals. We are all concerned with how much weight he lost through this ordeal, but hopefully when he is back to eating my mom's home cooking, the weight will come back on quickly. Now that isn't a dig at mom's cooking, its actually a compliment at how good it is! So the goal now is to gain weight and increase his energy level then proceed with the chemo regimen. We are all so glad that he is starting to feel better and hope things continue to go up from here. Special thanks to our parents for all the support and help given now and always. We love you!

MERRY CHRISTMAS!!!

The Luckiest Person Ever…

Normally, Melissa is in charge of the blog, but for once I decided to write to tell you about our Christmas week. Though my health may not be so good at the moment, in many ways I feel like the most fortunate person in the world. At the start of the week, Melissa and I had almost given up on getting our new house by Christmas. We went to visit my family in White Pigeon, Michigan for the week. But then on Tuesday we found out that we could close on the house on Thursday, Dec. 23^rd. Somehow we managed to set up closing for that morning and get movers for that afternoon. My family was so nice. Even though they had decorated their house for Christmas and prepared for us to stay for the week, they were willing to change their plans in the middle of the week, help us get settled at our new house, and celebrate with us. As we were at closing, Melissa’s sister Amy, her husband Dan, their friends Eric and Julie, and our friend Manu came over and decorated our house, inside and out, for Christmas. They (the “elves” as we called them) strung lights, put out reindeer and a train, and put up our Christmas tree, fully decorating it with new ornaments. We are so thankful that the elves infused Christmas spirit into our new home. Melissa’s parents set up our kitchen, fixed Bryce’s bed, and did everything we needed around the house. Our awesome real estate agent, Jim, along with our neighbors, both stopped by and gave us flowers. To top it off, Bryce had an amazing Christmas! He got to meet Santa Claus, opened more gifts than we could count, and will be very hard to separate from his new train set. I’m so amazed by how many people were willing to make this Christmas so special for us! I have the most wonderful wife, who did everything she could to make us all happy. Bryce is the most amazing child and I love him so much! And we have family and friends who are more generous and loving than I could ever imagine.

PS

We have many others to thank for generous Christmas decorations for keeps and on loan; Aunt Linda and Uncle Dan, Meagan and Tom, Brian and Caryn, Katy, Joanna, Christine, Levine family, Mom and Dad and of course Dan and AMY! Thank you all so much. Pictures to come of the decorated house. Enjoy the video of Bryce opening some presents.

Melissa Update

So I don't often update the blog with entries about Melissa. But this one will be an exception. A few months ago (July) I submitted a grant proposal to the NIH (National Institute of Health) on my research. They read all the grants and score the best ones. Mine was scored highly and will probably get funded. This means I have job security for the next three years and hopefully a little more money. Plus it's also a very prestigious honor, meaning it will probably boost my resume a little in the future. For 2011, I hope to publish again and see where this line of research takes me. If anyone is interested in what the actual project is, please let me know and I will post a little blurb. As a little teaser, it has to do with regeneration of the heart.

-Melissa