DISNEY

Whoo hoo!! The trip is a go and starts tomorrow!!! YAY!! See you in a little over a week.

Happy Times

Since the last post, things have been getting better and better. Shaun has been tolerating chemo really well. He has a couple days where he is out of commission but the rest of the time, he's been way better! His digestive track is not perfect, but its working again and he is eating, A LOT! He's working to build his strength and stamina so when we go to Disney, he can enjoy his time there. Don't get me wrong, there are still daily struggles, but we are thankful for his improvement. Maybe its the nice weather that is helping. Shaun was feeling so good on Friday he even mowed the lawn! We've been trying to enjoy the outdoors whenever possible and Bryce LOVES it. I've started running with him in a jogging stroller again (haven't done that since he was small) and we go to the park almost every day. As always, we are trying to live in the moment and truly enjoy these good times. When Bryce presents me with a beautiful flower, ok maybe its only a dandelion, I stop to smell it. Life is too short not to.

spring time fun

We learned something about Bryce last weekend...he's not afraid of worms! This is photographic proof that he is ready to go fishing with Grandpa and Great Grandpa as soon as the weather permits.

The craft for the weekend was decorating eggs. This is Bryce saying "oooh" His favorite was the green one with frog stickers.

I took a video of Bryce's latest athletic feat, base running and sliding but the camera ate it. So I will describe it for you....imagine Bryce in his winter coat running in circles in the backyard when all of a sudden, he drops to the ground with perfect sliding form and skids across the grass. He even knows to tuck one leg under. I don't know where he learned this, he must be a natural.

Shaun had chemo this week. He hasn't resolved his stomach issues but is hopeful that something will happen soon, fingers crossed. The doctors seem to think the safest way to resolve his issues is for chemo to work and shrink the tumors and conservative management until then. Its the every day little things we overlook. Yet think how important they are; eating, sleeping, pooping. Pretty important.

Over due update...sorry

Hi all. I'm sorry it has been so long since my last post. As usual, we've had a lot of ups and downs. Starting with the ups. We are really fortunate to have been able to visit with Ravi, Jen and their daughter Naya last weekend. Naya is a sweetheart and Bryce and her played really well together. Bryce had been sick, so no repeat of the make-out session from their previous meeting, but a friendship is blossoming. While they were over, we played in the back yard and got to meet our next door neighbor, Boris. I love Boris. He is an older Russian gentleman who's hobby is to raise pigeons and chickens! Bryce thinks we live next to zoo and often wants to go see the birds. Boris was nice enough to let him pet one of the pigeons and even gave us fresh eggs! I've always wanted a next door neighbor relationship like my parents have with their neighbors. I loved going over to visit with Pat and ask her all about her extensive garden. I hope Bryce will enjoy discovering the world of birds with Boris and be as inquisitive as I was.

Now for a downer...Shaun spent a few days in the hospital for another bowel obstruction. We know he has two areas constricted by tumor growth but were hopeful that they would behave and let him eat normally for a little while. He was doing GREAT for a week or two but then the family came down with a stomach virus, Shaun included. So with the fever and complicating bowel factors, things stopped working properly. Some ill advice by me also probably added to the problem (don't give imodium to someone who fights constipation). Anyways, Shaun is back on IV nutrition but not supposed to eat until things clear up. We know it takes several days and can be extremely uncomfortable, so patience and strength are really necessary for Shaun to get through this. Luckily, he is the biggest fighter I know and can will himself to achieve anything. And for everyone who was expecting pictures of the family in Florida, they will have to wait. Our trip to Disney World has been postponed until May and hopefully Shaun will be strong and healthy enough to enjoy it!

Another up lifting note, we are going to DISNEY! Our trip is really something we have been looking forward to and although it has been delayed, we are still super excited. I love the magic of Disney and want to share it with Bryce. A big thanks to Brian and Caryn and Scott Larimore for their help in making arrangements for the trip. Without your help 1.) we wouldn't be able to go at all and 2.) postponing the trip would have cost us a fortune.

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.