Monday, January 26, 2009

Surgery Update

We met with Samantha's surgeon Dr. Smith today. I was really nervous before going in, I tend to get really tense when we talk to the doctors. It is funny because in every other aspect of my life I want to know all the details, but in this situation, I just don't want to know the details unless they are good! :) However, as soon as I met Dr. Smith I felt calm, he was really wonderful and told us everything I needed to know without scaring the crap out of me!

Good news first, they are fairly certain that the tumor is not cancer! That is really great because if they are not able to get all the tumor out (which they most likely won't be able to) there are medications that stop non cancerous tumors from growing and shrink them. They get in a frozen like state and don't cause any problems. In addition we found it at a time where emergency surgery is not necessary so the doctors have had the time to plan every detail and get all the right people working on Sammy's case. That said, Dr. Smith indicated that if we hadn't brought her in when we did, it would have been an emergency situation and she would more than likely had to have gone through one surgery to relive pressure and a second to remove the tumor...we feel so blessed!

The not so good news is that the tumor is not in an easily accessible place; it is in her mid brain near her brain stem. The doctor indicated that he will probably not be able to get it all out without causing damage and his goal is to go in there and cause little or no damage to her surrounding brain. The major risks of the surgery are stroke (during the surgery, but the risk is minimal) as they will be near many blood vessels and after the fact she is likely to have weakness on her right side. Physical therapy will most likely improve the weakness over time, but she will have some work to do to get back in shape. She may never get back all her strength, but she will most likely recover most of it.

After the surgery she will probably be in the hospital for about a week to recover. They will send the tumor to pathology to determine what it is and then we will meet with the oncology team (whether it is cancer or not) to determine the best medicine to treat the remaining tumor.

The bottom line is that the doctors have seen this type of tumor many times and said that the outcome is generally very good for the kids! In Dr. Smiths words "they live to be 100". We are very optimistic, but at the same time realize that between finding the right medication after the surgery and the rehabilitation we have a long road ahead of us...and I better get comfortable driving around Boston!

Thank you all for your positive thoughts and prayers, this sounds corny, but we really feel the positive energy from everyone! Please remember to think about Sammy this Thursday and we will keep you posted!


  1. Amanda,
    Thanks for the most recent update! The Children's Hospital in Boston was the best decision you could have made for Sammy, as you are well aware at this point:)
    Now, driving in Boston is not that bad...just remember to check if you are driving down a one way street or not:) Those darn one way's in Boston...
    I will keep thinking of Sammy during my morning Yoga/Tong Ren routine, especially on Thursday!

  2. Amanda, Glad to know the Dr's consultation visit went good today. See - God has already answered prayers by keeping you calm in the midst of this crisis! And you received good news that the tumor is most likely not cancerous, that only one surgery is needed, and that the dr's have seen good outcomes from similiar situations in children. What a blessing! I have full confidence that God will see you through and Samantha will return to good health. Will continue to pray for Sammy, your family and the Dr's as you all prepare for the surgery on Thursday. All the best, Kris

  3. Hi Amanda, I'm a friend of Melissa Pratt's. CHB is the best place to be for Sammy. The team of doctors and staff there are awesome. We have a dear friend Mary (she's 6) who has rec'd treatment there for liver cancer for 2 1/2 years now and they have been just awesome. The other families that you will meet are terrific too! I gave Mary's Mom Kristina your info and her e-mail is if you'd like to reach out to her. I'm sure she has some great resources to share and she has a great sense of humor, which you may need at this point.

    We'll all be praying for Sammy on Thursday and for the doctors as they perform her surgery.

    Karin Ouellette

  4. Hi Amanda & Zach (Sammy & Adrian too!!),

    Just want you to know that we're thinking of you often and sending positive thoughts your way. Glad to hear Sammy's in high spirits - kids resilience is such a blessing, isn't it? Thanks for taking the time to do this blog. It's a great way for family and friends to let you guys know how much you're loved and supported!! Hang in there and stay strong....all will be well.

    Love, Uncle Peter & Aunt Jodie

  5. Amanda, Zach, Sammy,and Adrian,

    I am pleased to hear that you had a good meeting with the doctors, they can be nerve racking that is for sure.
    I'm so happy that you've set up this blog so that all of us back home can follow her progress.
    You and your family are on my mind a lot, I will be saying extra prayers for you guys on Thursday.
    Take care of yourselves.
    Love Lori Josh Isaac and Trevor

  6. We will all continue to pray for Sammy and you guys. We also will pray for her doctors on Thursday. Please be sure to take care of yourself too. I know as a mom it's hard sometimes, but she needs you to be healthy. We are all here if you need anything at all. I know that you don't like to ask for anything, but remember we wouldn't all offer if we didn't want to help! Keep thinking positive thoughts! Thanks for keeping us posted.