Thursday, April 30, 2009


We are home and it really feels good, but it also felt really good to be in Boston again. The Ronald McDonald house is such a great place to be when we go to Boston. We always meet such wonderful people who have gone through, and continue to go through extraordinary experiences. We met one woman from Fairfield, ME who lost her 16 year old son eight years ago while he was training for a Make A Wish fundraising bicycling race. He was riding on a 70 mile training exercise when he was hit by a car and died suddenly. He was never ill and was only planning to be in the race to support a cause that was dear to him (as at the time he was aware that his mother had a heredity condition that caused benign tumors to grow in her body). Shortly after he died, his sister was diagnosed with a brain tumor and shortly after that his youngest brother was also diagnosed with the same type of brain tumor. All the while, his mother was battling tumors of her own which have since resulted in her losing her leg and undergoing several surgeries to remove tumors from her body. This poor woman has now lost a son, has TWO children with brain tumors, and continues to deal with her own medical issues.

We also met a family with a nine month old infant that has tumors in her mouth and face. When she was born, the doctors initially thought she was tongue tied, but later found out that she had a very aggressive tumor growing in her aggressive that within days of her birth, the tumor had grown so large that she couldn't eat or breath and a tracheotomy had to be performed. The doctors had all but written off this little baby but her family was diligent and in their desperation searched the Internet and learned about a clinical research trail that might help. This family is from Florida and has made countless trips to Boston to help their baby girl...and so far the results are positive. We actually saw them the last time we were in Boston (three months ago) and they were there again this time and the visible difference in the baby is considerable.

So, I guess my point is two fold. First, we are so lucky to have found such wonderful doctors so early in our process. Second, there are people out there who have it so much worse than we do. Not that it makes our situation easier, but it makes me have hope. For a couple months after Sammy's surgery, I could only be okay thinking that when we went back to Boston for her follow up MRI, the only way I would feel okay would be if her scan was completely clean...meaning that there would be only the hole where the tumor was, and no "reflections". Well as I said in my last post, that isn't the result we got. Altough our visit was very positive, they still aren't sure if she has any residual tumor cells in her head. We are essentially in the same situation we were before her MRI...we just don't know what is going to happen...and finally that is STARTING to be okay. The truth is, we never know that we are going to be okay, I could get hit by a bus tomorrow; the truth is that we fool ourselves into thinking we are going to be okay because we can't handle the fact that the unexpected might happen. Well, let me tell you the unexpected does happen and it happened to us! I can finally say that I am starting to be okay with that. I still don't want Sammy to have to go through chemo therapy, and I don't want her to have to struggle with school work or learning...but that might happen. I would be lying if I said that I was completely okay with that, but I am happy to say that I am starting to accept it.

Life throws us so many curve balls, but I really believe that God doesn't give us anything we can't handle and that everything happens for a reason. I don't want to be going through this situation, but honestly if I wasn't, I don't know where I would be...this is my life now. I often think about times in my past and reminisce about how easy life was...but in reality it was hard for me then too. God only gives us what we can handle, and it was hard for me then because it was all I could handle at the time. I can handle this situation now, even if I have freak out moments and times of stress. We will get through this situation and become better people on the other side! I finally have faith.

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