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.

Wednesday, April 29, 2009

April 2009 MRI Update

So Sammy had her first post operative MRI at Children's Hospital in Boston today. She did so well during the test, I was so proud of her! She was really scared during her last MRI and she wasn't looking forward to having another, but she was so brave, the worst part was probably the IV, but even with that she barely cried!

So after she had the MRI, we headed over to the Jimmy Fund Clinic to get the results...which were GREAT! Her scan shows that there has been no new growth and that the hole that the tumor left is shrinking as it should (in this case it looks like it shrunk by half). She has some spots along the edge of where the tumor used to be that are still "reflecting" on the MRI, but there is less there than there was directly after her surgery. They don't know if the "reflecting" is residual tumor cells or if it is scar tissue caused by the surgery...but as long as it doesn't grow, it doesn't really matter! And, it actually got smaller! So at this point, we wait and see what happens. We don't do any treatments and continue on with MRI's every three months for the next year.

We are so pleased with the results and are choosing to believe at this time that the "reflecting" in her MRI is scar tissue, but even if it isn't we know that the type of tumor she had is very responsive to therapy.

We would like to thank everyone for sending positive thoughts and prayers our way, we really believe that it has helped. We plan on staying at the Ronald McDonald house tonight and heading to the Aquarium tomorrow to have some fun!

Thank you!

Monday, April 13, 2009

Next Steps

We got word from Boston that Sammy's first post operative MRI (well other than the one she had while in surgery) has been scheduled for April 29th. It will be a full day in Boston; her MRI will take place in the morning and then we will meet with her team of oncologists at the Jimmy Fund Clinic. I'm sure the MRI will be an ordeal for Sammy as she will have to be sedated and that means she will have an IV put in, but she is a brave little girl and I know she will do okay with it. We have been struggling with how much to tell her about what will happen when we go to Boston because she is the type of kid that thinks about things too much and gets stressed. On the other hand we want her to trust that there will be no surprises and that if we tell her something, it is the truth. So we made the decision to go ahead and just tell her that when we go to Boston this time, she will have a "shot" and that she will have pictures taken (our way of describing her MRI). We minimize it as much as we can and don't talk about it a lot or at length, but we feel it is important that she know what is going to happen. She will be doing this for some time, so I guess the sooner she gets used to the idea the better. So far, she is doing just fine with it and we are talking a lot more about the fun stuff we will do in Boston (as we plan on taking the kids to the aquarium as well) rather than the medical stuff.

In terms of Sammy's progress she is still doing amazingly well. She goes to physical therapy once a week and has settled in well to her new preschool. We have also been able to get to the park a few times, and the way she runs and climbs amazes me! I can't believe that only a few short months ago she could barely walk! She is such an amazing little girl.

Zach and I are doing well and trying to keep a positive attitude. It has been a bit of a challenge for both of us to accept our new reality. Although nothing in life is ever certain, I think most of us live with a false sense of security that our life will continue on a fairly predictable course. Obviously in reality nothing is predictable, but I think we all fool ourselves into thinking that it is. Well, this situation is not allowing us to fool ourselves into any false sense of security and we are now on a path to accepting that. You would have thought that when Zach's mother suddenly passed away in a car accident three years ago it would have occured to us that nothing is set in stone, but apparently the reality of our fragility did not sink in. We both like the movie the Matrix and I often joke with Zach that I wish I could take the "blue pill" (or what ever color the pill is that lets you live obliviously in the Matrix without knowing it is the Matrix), but alas that is not possible, and really I don't think I would really want to take the blue pill, because the lessons we have been learning through this experience are truly life altering.

Please keep Sammy in your thoughts and prayers this month as her first MRI approaches. She will need the strength to face her fears with the actual procedure and we will need the strength to get through the experience as well. I will let you all know the results.

Thank you!