Friday, January 30, 2009

Final Surgery Update

Well, Samantha’s surgery was a complete success! We were so scared after meeting with the surgeon this morning, he didn’t have much confidence that he would be able to remove the entire tumor…but that is exactly what he did! With his expertise and the help of some very sophisticated equipment, he was able to go in, cause absolutely no neurological damage and remove the entire tumor from her head. We are just so pleased with the results! Sammy is in the ICU now and is doing so well, the nurses have already fallen in love with her sweat personality and best of all she is moving both sides with ease and is talking with no trouble. We had expected the weakness on her right side to worsen initially, but she has already gained some strength. I was also worried that brain surgery would in some way change her personality, but she has already demonstrated that she is her old self. She wanted to eat fruit snacks this morning and she wasn’t able to eat anything due to the surgery, but I had told her that after the doctors take the booboo out of her head, she can have some fruit snacks. Well she was barely awake and I told her that I was so proud of her, that the doctor had fixed her booboo and she bolted upright in bed and asked if she could have her fruit snacks now! That’s my girl!The doctor indicated that he still did not think that the tumor was cancer, bBut we won’t know for sure until the pathology comes back in the next couple of weeks. We will still need to meet with the oncology team to determine if any further treatment is necessary because the surgeon did indicate that there were some stray tumor cells still in her brain…so some sort of therapy may be necessary, but for the time being, she is out of danger and we have plenty of time to figure out what treatments are necessary if any.I want to thank everyone for their support through this and ask that you continue to keep Sammy in your prayers as we still may have a long road ahead of us, but this surgery couldn’t have been more successful. I really believe that is due in part to all of your positive thoughts and prayers…thank you for helping to save our girl!I plan to continue to update this blog with Sammy’s progress so if you are interested in following her please do!THANK YOU ALL!!!

Thursday, January 29, 2009

1pm Update

We just heard that they are in her brain and are starting to work on removing the tumor. This is good as there was a possibility that they were going to get in there and not be able to do anything. Sammy is stable and all is well at this time!

I can't wait for this to be OVER!


So we are at the hospital and Sammy's surgery has begun. I can't tell you how hard it was to leave my little girl in the OR after they put her out. She was so happy this morning, and they gave her some medication to relax her before she went in, it was so funny she was acting like a little drunk girl! They came out to update us a few minutes ago and so far things are going well although they haven't started the actual surgery yet, they are using some tools to look at the tumor before they make the first incision.

Zach and I are just so nervous...I didn't think it would be this bad, but holy shit, my kid is having surgery on her brain! I will do my best to keep everyone updated through the day, but I am having a hard time accessing this site from the hospital for some reason.

Keep sending Sammy your positive thoughts!

Tuesday, January 27, 2009


So anyone that knows me knows how much I hate change...which is not very good since life seems to change all the time! I have been trying not to think too far in the future; at this point only thinking about the surgery. However, every now and then it dawns on me that my life has been turned completely upside down! Nights are usually hardest for me, the kids go to bed and I am stuck in the room with them and I start thinking...that is never a good thing!

Being in this house is both wonderful and scary, many of the parents have been going though situations like us for many years...and I can't help but wonder if we will be going through this for many years. There are no intact families here other than ours, all the other families here have the sick child and one parent here with the siblings and other parent home. I know that if this goes on for too long that will be our case as well and it breaks my heart to think of having to leave Adrian. I feel so bad that he is being affected by this, but at the same time I want to be able to give Sammy what she needs as well. Oh well, I guess time will tell and life is all about the journey not the destination. I need to remember that!

Anyway, we had a good day today, we ventured to Boston in the car with no map and no idea how to get around...that was interesting, but we didn't get too lost! We are looking forward to snow in the city tomorrow, we just hope that everyone that is travelling down for Sammy's surgery makes it here safely. Oh another change I forgot, Sammy suddenly started calling me "Mom" instead of "Mommy" and she says it with and attitude...what is up with that and why would my cute little girl now start calling me "Mom" with an attitude! :) I guess just another change to get used to!

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!

Saturday, January 24, 2009

The Beginning

About three months ago, we had been noticing for a while that our three and a half year old dauther had a slight tremor in her right hand. We made a call to the doctor who indicated that it was probably just a concentration tremor and not to worry about it unless it seemed to get worse. Over time, the tremor became worse and we also noticed that she was falling a lot when walking and almost always was stumbling around. I was starting to get worried, but thought that maybe she was a little delayed in her fine motor skills as she has a cousin that has sturggled with that. Last Monday morning however, I noticed that she was not using her right hand to perform normal tasks (eating, brushing teeth, etc) and when I asked her to use her right hand she could use it for anything that required fine motor skills. I was scared and my husband and I decided to take her to the ER.

The ride in was really stressful, I knew in my gut somthing was really wrong, but at the same time kept trying to convice myself that she was find and I was just over reacting. We got to the hospital and they got us right in. The doctor looked at her and when he checked her reflexes he noticed that her right foot moved the wrong way when he stimulated it. He indicated that we would do a cat scan. She got a cat scan within an hour and they immediately told us that they had spotted a mass and that we needed an MRI. Next thing you know we were in an ambulance heading over to Central Main Imaging where they would perform the MRI. They didn't want to sedate her so she was awake the whole time and she was scared! I had to climb in the tunnel with her and she cried and screamed the whole time. The results confirmed that she had a tumor.

The doctor met with us and gave us the option of going to Maine Med or The Children's Hospital in Boston. We chose to go to Boston. We were required to take an ambulance down, I rode with Sammy and Zach followed behind in the car with Adrian. We were just so shocked. We got to The Children's hospital that night and they admitted us. We stayed in the hospital for three days and they have scheduled a surgery to remove all or as much of the tumor as they can for Thursday January 29th. They do not know what the tumor is, and we won't know what it is until about a week or so after her surgery.

We are now staying at the Ronald McDonald House in Boston and it is absolutely wonderful! Very homey and so helpful to be with other children and parents going through similar experiences. This is such a hard situation, but we are just so grateful for all the support and encouragement we have received from so many people - including complete strangers. I was always really shy about offering support to people going through hard times, it felt weird. Going through this situation has made me realize how important it is to reach out to the people around you. I want to extend a heart felt thank you to everyone who has sent positive thoughts and prayers our way and ask that you continue to do so.

I will do my best to update this on a regular basis so that you can follow Sammy's progress. She is such a strong resiliant little girl and I KNOW she will pull through this!