CHICAGO, HERE WE COME!

Well, it's official. Are plan of action is in place! Sean has an appointment set up at an oncologist specialist in Chicago on Wednesday, March 5th. Sean will hopefully be starting a new trial there of the compassionate use of a drug called ipilimubab (crazy name, I know!). Others may know this drug as MDX-010 or anti-ctla4. It would have been impossible to find out any of the information on this trial if it weren't for a few other wives who know exactly what we are going through, so I am great full for you beyond words! I am not fully sure on the side effects of ipilimumab, but to my understanding, they will be far less severe then Sean's IL-2. I will be sure to let everyone know how Sean's appointment goes on Wednesday.
Tomorrow we will be celebrating Ella's first birthday! Oh my goodness, I cannot believe she will be ONE next week! Both the girls continue to grow, Addie has become so independent and Ella is still so cheerful as ever. Ella now has 3 teeth, she is able to go from sitting to standing all by herself now (without holding on to anything), and I am sure she will be walking in no time. Oh no!

Decisions decisions...

We are finally home tonight after a very long day! This morning Sean had his first actual physical therapy session. He is doing pool therapy, so while all of us are out here freezing are butts off in the snow, he gets to hang out in a nice warm pool! Well, I guess it may be not that great for him, because he actually has to exersize, but....! After physically therapy, we had to make the long trip down to University of Michigan to make a plan of action. We discussed many treatment options, but as I was saying before, not to many options left in Michigan. There are a few chemotherapies that Sean would be able to do, but I think Sean and I want to lean away from chemotherapies and stick with immunotherapies since he seemed to have a better response with the immunotherapy. Dr. Lao discussed the scan results with us, but could not base to much off of those results, as he did not have Sean's prior scan reports to compare it to. Gerber is supposed to be overnighting all of his reports to Dr. Lao, so I believe we will discuss that over the phone about how much his tumor really has grown later this week. Sean's cancer was very aggressive before, but since doing IL-2, it is still contained to his left lung and the tumor seems to growing at a much slower pace now! IL-2 did not do enough for Sean to be able to continue it though. The plans that Dr. Lao would like to do is have Sean wait another 4 weeks or so, then do a rescan since IL-2 can have a delayed reaction sometimes. I am not sure we want to go this route, as it seems to be such a long time with no treatment, since he has not been on treatment for 2 months already. I think the decision we have made so far, is that we want to call NCI (National Cancer Institute(in Maryland)- cancer.gov) tomorrow. We will see what they have available to Sean and he will then probably set up an appointment for his initial exam there to see if he will qualify for anything. I will let everyone know when an actual plan is in place! Thanks everyone for the continued support for Sean!

~Nicole~

A Long Road Ahead...

I have so many things going through my head right now. I was able to obtain a copy of the scan results from yesterday, and they are not good. I do not quite fully understand the report yet, but it does say that it is not in favor since his last scan. Sean's tumor has grown, but I do not know how much larger it is until we speak with Dr.Lao on Tuesday. I am in the midst of doing some major research right now to find out what options Sean will have from here. I am pretty sure we are going to have to travel somewhere for his next treatment, so we are looking for the best! I have seen a lot of good things going on at NCI/NIH in Maryland. Any and all positive thoughts and prayers would be greatly appreciated. We are taking what we got and moving forward, the battle is not over yet! I will let everyone know what we find out on Tuesday.

~Nicole~

Scanxiety!

Well, today was the day for scans. A whole six weeks or so waiting on them and now they are done. Since Sean will be going to University of Michigan on Tuesday, that is when he will get the results from these long awaited scans! Yes, really, we have to wait ALL weekend to find out results that will make such a difference in our lives. We definitely have high hopes, but every little ache, pain, or even sneeze for that matter, worries us that the cancer is continuing to spread. Please keep us in your thoughts on Tuesday!
Sean has been having a bit of a pain in his side the last few days, so he will probably have it checked out tomorrow.
Tonight, a friend of Sean's dad came over to see Sean and I. He brought with him a gorgeous hand carved cross that says "LIVING HOPE". Hope is something that is in our lives daily. We had a very nice discussion about prayer, and he reminded us that God is here for us.
There are so many of you out there thinking of my family and I guess I do not even realize how many of you there are. Thank you for all of your continued support, thoughts, and prayers!

~Nicole~

SNOW, SNOW, AND MORE SNOW!

Yes, I know, it has been way to long overdue for an update. Honestly, not much has been going on lately. Sean has been feeling pretty much the same. He is still very weak and exhausted feeling, and has a little tolerable pain. The biggest concern is his weight loss. He is down to 121 now! Although, he has been eating more lately and hopefully that will catch up with him soon. It seems like we have been waiting forever for scans already. Next Thursday will be the day for them! Please hope and pray that he will have good scans, so he will be able to continue IL-2.

It has been snowing NON STOP! Snow, snow everywhere. It has also been terribly COLD. Like -22 degree wind chill cold. Here is a photo of my car after some of the snow got dumped on us.

Addie and I decided to go out to check out all of the snow

Look at all this snow!!!!
(that would be Gerber tower behind her)

Last but not least, Daddy and the girls!!!