It has been a while since my last post. We have been quite busy. Going back and forth to Baltimore for 5 weeks and then trying to get into a routine with the kids and work. Shane has been doing amazing! He started with Pazopanib on March 15 and as of May 5 there is a 12% decrease in tumor size. We are beyond thrilled! The side effects tolerable. Mostly stomach issues and Shane is going grey early. But beyond that, there is no significant side effects. We couldn't be happier with the results. After all the ups and downs of the past two plus years we have something to hold on to.
The kids have been wonderful as well. They know what is going on with Shane, how much they understand is another story. But they have been incredibly brave and loving.
Our generous friends who have donated money and thrown parties to raise money, we are humbled by your love and your generosity. The total amount of $750.00 that was given to us we could not keep. We decided to donate the money to Shane's oncologist, who is raising money himself for a research tool in the fight for Medullary Thyroid Carcinoma.
This fight of ours will never go away yet, we believe that good news will keep coming.
Thank you again for all the love and support

Where to begin... when I last wrote, everything seemed to be going according to plan. We were waiting for Shane to start the clinical trial, mentally preparing ourselves for the next phase of our journey. We were set to begin on a Tuesday, just waiting for the final approvals. Shane received a phone call on the Thursday night before from the oncologist letting him know that he did not meet the requirements for the clinical trial. Shane broke his leg 13 yrs ago and he has a wound there from his compound fracture. The drug company was afraid that the "surgical wound " may open up as a side effect of the drug so therefore he was deemed ineligible. We were shocked to say the least. For two years all we have been told was to get into this clinical trial and then for it to be yanked away at the last minute was a big blow! We tried challenging the decision to no avail. To me it was such a slap in the face. So now we were back to square one yet again.
We went back to Baltimore to meet with the oncologist to discuss other treatment options for Shane. There were a few that were presented and one trial that just opened up at Hopkins. This drug trial is in Phase II and is called Pazopanib. It is similar to the other drug in that it is supposed to shrink existing tumors and hopefully keep any growth from happening. What is great about this drug study is that there is no placebo involvement. Shane is guaranteed to get a drug! There are some nasty side effects and we of course will deal with them in stride.
We will begin next week, which means going to Baltimore weekly for a month and then once a month after that. In 2-3 months we should know if the drug is working or not. We will be talking to the kids about this soon and hope they have some understanding of how brave their Daddy is and how hard he is fighting.
I also must say how lucky we are to have the most amazing and loving friends and family. Thank you for your never ending support!

news

It has been a very long time since I have blogged. Probably since Dani's surgery. It was actually a good thing, no news is good news. Shane and I had gone down to Hopkins in August and he had scans done and at that time there were no signs of tumor growth. Shane insisted that the scans were wrong because he was feeling tumors in his neck, but you can't argue with what's not there. Anyway, we were told to come back in 6 months and go through everything again. During the first 3 months Shane was feeling great. He was going to the gym, he lost 20 lbs, really in a good place. These last few months however, Shane was feeling a bit more fatigued and had been complaining of more soreness in his left shoulder and he could tell that the tumors in his neck were growing. His stomach has also been not so good, which is a side effect of the disease.
As the appointment got closer we were getting more and more anxious. We both had a feeling that we weren't going to be hearing anything good. We went down last Tuesday. Shane went through all of the blood work and scans that are necessary for the clinical drug trial. At this time, the oncologist now has a say as to who gets into the trial or not. So Shane will be starting the clinical drug trial we have been waiting to go on for the last 2 years. This is great news. We are finally going to be doing something.
Here is the bad news, the results from Shane's scans show a tremendous amount of growth. There is regrowth in his neck, growth in his mediastinum, armpits, a tumor adjacent to his aorta and now it has metastasized to his liver. They also noticed a spot on his femur bone, which may or may not be benign. This news has been a huge shock to us. I feel like we are learning he has cancer all over again.
This is a lot to take in, we are trying to absorb all of this information and how this is going to effect our family. We now have to hope that when Shane starts this drug trial in 2 - 4 weeks, that he does get the drug and not the placebo. However, with any drug protocol there are side effects that we must be vigilant about.
The last 5 days have been very emotional for us. I know the upcoming weeks and months are not going to be easy either, but we are a strong and whatever comes our way we will fight it together! We are so lucky to have such amazing family and friends, You have been a tremendous source of strength to us and we thank you. FMC!!!!