Tuesday, July 29, 2008

Day 2--Biochemo without the bio!

We are in Chicago now. After getting the MRI results on Friday, Dr.Hallmeyer decided to start Sean back up on biochemo, but without the bio! No biological therapy until Sean is off of steroids, so he will just be receiving the chemo part of it this week. The MRI showed a lot of swelling and some bleeding on Sean's tumors, so his Decadron was increased and he will be on it a while longer. He will be getting a follow up MRI probably sometime next week to see if there is any change. They do not know whether Sean's tumors are bleeding because they are dying or if they are just bleeding because melanoma sucks.

So.... Sean finished his first dose of chemo last night. He is feeling great, he does not even have to be hooked up to any IVs during the day! No side effects yet--wahoo! Hopefully it will stay that way for the rest of the week. He will finish up the last dose Thursday night, so hopefully we will be able to go home on Friday (because we love driving in Chicago's Friday traffic).

Anyways, the hospital is boring, the food is horrible and its hot! Ok-- theres my complaining for the week! I will update soon to let everyone know how the rest of the week goes... Thanks everyone!

~nicole~

Wednesday, July 23, 2008

well...

So much has been going on these pass few days, I don't think I am even sure what is going on! Sean ended up having another seizure on Sunday. It was much less intense and all of our friends were over that night, so it was nice having the help and support while it happened. Sean stayed completely conscious during the whole seizure this time also. He chose not to go to the hospital that time and he has not had another one since. He has NOT had an MRI yet, which I am quite upset about. He did have a CT of the brain the first night we were at the hospital, which does show swelling on his brain. (Although we were completely misinformed at the hospital that night, as the doctor had said there was not much swelling and that the CT did not look much different to Sean's CT a few months ago, so at that point we really didn't know why Sean was having seizures.) The swelling is more then likely caused by the whole brain radiation done a couple weeks ago and probably the cause of Sean's seizures. We finally have an MRI scheduled for tomorrow now and Sean will be seeing Dr.Hallmeyer in Chicago on Friday to go over everything. We really do not know what is going on at this point as Sean was suppose to start round 3 of biochemo this coming Monday, but I am not sure he will since his steroids have been bumped back up. I guess we will find out more Friday. I will try to get another update up this weekend to let everyone know whats going on... We need tons of prayer right now!

~nicole~

Saturday, July 19, 2008

We had a bad day...

Well, instead of goinf out to celebrate out anniversary yesterday afternoon we ended up stayin gat the hospital for hours because Sean had a seizure. I had just ran into a store for less then 5 minutes while Sean waited out in the car. When I got back to the car, I let Sean know that I did not find what I was looking for (a hat for Addie). He said okay and not even a couple seconds later he started making a noise-he was trying to yell to me, but his face had started to seize... he was trying to spit his gum out, so my first reaction, I thought he was choking, but after he was able to spit his gum out, I realized he was having a seizure. He had both of our phones in his pocket and somehow adrenaline must of kicked in and he was not unconscious yet... he was able to grab his phone for me, so I able to call an ambulance and ask some people at the store for help. Sean seizure, even though seemed like it lasted forever, stopped pretty quickly and the ambulance also showed up quite fast. One of the scariest part about all this was after Sean came out the seizure and was conscious again, we though the right side of his face was paralyzed. If he tried smiling, only half of his mouth would smile. He was also having a hard time talking right, his speech was really mumbly and slurred. After we had been at the hospital, Sean's face started to return to normal as well as his speech. They did a CT scan of Sean's brain, it doesn't look much different then what it did before, just a little swelling on one of his tumors. They pumped Sean full of some Dilantin (seizure medicine) and upped his Decadron a little. After they pumped Sean full of the Dilantin, he started getting extremely nauseous and dizzy. They then gave him Zofran, which did not work, so they tried Compazine, which helped a little, but the dizziness was still there, so then they gave him some Valium. So Sean was pumped quite full with medications before they were able to release him from the hospital! The doctor had said that the nausea and dizziness was more then likely caused by the huge dose of Dilantin that they had given him so quickly. We were able to come home last night, Sean is doing fairly well now, just a slight headache and his coordination is a little off. We will be on the phone with all of Sean's oncologists first thing Monday morning to see what the next steo should be and to possibly get an MRI scheduled. I will keep everyone updated as soon as we find out what is going on.

Thursday, July 17, 2008

Happy Anniversary and Summer Fun!!!

Today is Sean and my 4th anniversary! 4 years! We are going to be going out for the weekend to celebrate, wahoo! Boy does time fly! I LOVE YOU SEAN!! Happy Anniversary!

Our summer has been sooo busy... we have definitely had the chance to get out and have some fun! Here are a bunch of photos from activities we have done so far this summer!


Our county held a charity event to help with funds for Newaygo County Community Services... It was Mudbowl Mania! Here is Sean's sister Kasey and her boyfriend. As you can see--mud volleyball was quite fun!

Kasey and Rickey
This isn't our team, but I thought I would post it so you can see what our court looked like!
FUN~FUN!!!!
We were also able to make it over to the sand dunes! We absolultely love driving over there, relaxing, yet crazy adrenaline at the same time... so much fun! Hope to make it back there again soon.

Eric's truck in a puddle--looks like it rained quite a bit before we were up there!
How could you NOT fall in with such a cute innocent little face??
More of the gorgeous view...

and here is from today::
Gerber Baby Food Festival Coorporate Olympics
yes that is my hand feeding his face--blindfolded!!!

Who says you can't ride a tricycle when your over 6ft tall?
(by the way Justin P-- congrats on the new baby girl!!)~nicole~

Friday, July 11, 2008

Good news and bad news...

Well... Sean seen Dr.Hallmeyer in Chicago today. He was able to have CT scans on Tuesday, so we went over the results for that. Here comes the good news and bad news! Bad news- there are 2 new tumors, one on his pelvis and one in the soft tissue near his stomach area. The tumors are still fairly small and they are NOT in main organs, so that is good. The good news is that the tumor in Sean's lung has been shrinking! It used to take up about 75% of the upper left lobe and about all of the lower left lobe. Now, the entire upper left lobe is free from disease! The tumor does still cover about 2/3 of the lower left lobe, but it is still shrinking!! We are relating the 2 new tumors to the fact that Sean has not been on any treatment (except for his brain) for 3 months. We discussed options of what Sean should do next, it was a toss up between biochemo and the MDX-010 trial. We decided to go with biochemo because of the response Sean's lung has showed, reserving MDX for a later date. So... Sean is dreading the return to the long, crappy hospital stays! He will start round 3 on July 28th because they want to wait until Sean is completely off the steroids from WBR. Oh yeah, Sean also had some bloodwork done up here last week and the results came out pretty descent! His white blood count is still a little high, at about 22,000 (supposed to be between 4-10,000) and his red blood being the best since this has all started being over 12! (supposed to be around 14, but we will take what we can get as it was running around 8 for the last year!). Sean is still feeling pretty good, he has had a few headaches here and there though, nothing serious.
On our way home from Chicago today, Sean has been insisting that we have some Chicago style pizza, so we made the stop to Ginos East on Wells St. I must say, I didn't think I would care for the deep dish pizza, but it was great! Their service was great and so was the pizza! Not to mention, the pizzeria was awesome inside, having graffiti everywhere! So anyways.. thumbs up to Ginos and their Chicago style pizza.
I think Sean and I are just going to try to take these next few weeks off and enjoy summer before he returns to his treatment at the end of the month... Thanks for everyones prayers that have been sent, they are obviously working!
~nicole~

Monday, July 7, 2008

whole brain radiation: DONE!!!

Sean finished his last whole brain radiation treatment today! Yay! Today they let him take his mask home that he had to wear during each treatment. As soon as I get a photo of that, I will have to post it. He is still feeling fairly well, just getting over a sinus infection... Unfortunately I have been sick also and I have no voice today, blah.
Our days have been extremely busy this summer, seems we have plans everyday for the rest of the summer! We enjoyed many cookouts and get togethers this holiday weekend. I am heading back to work for a few days this week, then Thursday we are heading over to Chicago. Sean's appointment is not until Friday over there, but we figure we will go a day early because Sean wants pizza!! : )! He has been eating so well lately, he gained another 6lbs this week! He is definitely starting to look like his old self again. Saturday I will be participating in Mud Bowl Mania, a charity event to help raise funds for Newaygo County Community Services (NCCS). I am sooo looking forward to playing volleyball in the mud! I will have to show Sean how to use the camera so he can take some photos : )! Here is the link if you would like more info on the tournament: http://mudbowlmania.com/ . I think we are going to attempt to make it out to the dunes on Sunday. Sean has only been there once this summer so far and I have not been able to go at all yet! We were planning on going over there for the 4th, but our plans changed a bit when one of our friends ended up taking off to California on very short notice to fight the fires over there! We are definitely sending some well wishes and prayers over to California to all of those who are being affected by the fires.
The girls are doing well. Addie is going through a major nightmare phase right now. She is always talking about the wolves and monsters that are going to come get her. Poor girl : (. Ella is still the happiest baby around, but boy can she throw a fit! We were going to start potty training soon, we got her a new potty, but she happens to be just like her mommy and is a little on the short side--she cannot reach t sit on the potty (a potty training potty!). Looks like we are gonna have to wait a couple more months!
I am including a few photos, one is from now and the other is from March of this year. It is amazing the difference of what Sean looks like in each photo. It goes to show how strong he is and how he is not going to let th
is cancer crap take him down!

Sean in March 2008- he weighed less then 110lbs.


Sean Now! Up to 132lbs and looking good : )!
(please don't mind my extremely squinty eyes in this photo!)~nicole~

Tuesday, July 1, 2008

Okay, here they are... photos for fun!!


Before it all came off... : )
During...
(I tried getting him to go to Walmart like this, but he wasn't going for it)


Does my hair look ok like this?

The after! Bald really is beautiful, isn't it : )!


Also, I had my stitches taken out today and results for the biopsy came back benign! Wahoo!

~nicole~