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!

Monday, March 16, 2009

Make A Wish Update!

Samantha's "wish granters" came by this weekend to talk to Sammy about what her wish might be. She was pretty shy, so we had to do most of the talking, but in the end, I think it was clear that her wish would be best fulfilled by going to Disney World. They asked her a lot of questions about what her favorite things were and she almost always answered The Little Mermaid or princesses and clearly most princesses live at Disney! They will submit her wish to The Make a Wish foundation who will need to approve it. It generally takes about three weeks to find out if the wish is approved as they have to follow up with her doctors to make sure that she is cleared to do all the things the wish will encompass (fly etc).

We are really excited, but at the same time, we aren't making a big deal of it. She tends to really build things up in her mind if we spend too much time talking about something and then she seems to be disappointed with the actual experience. We are going to try to keep as much of the wish a surprise as we can. We will probably tell her where we are going, but we won't tell her much about what we will do once we get there. She is so young right now, she really doesn't understand what Disney World is, so it should be pretty easy to keep the details quite.

So that is where we stand right now! I will let you all know when we get word about if her wish is approved or not!

Wednesday, March 11, 2009


While we were in Boston I received a call from Sammy's preschool informing me that they were closing permanently. I was really sad because I felt like it was a really positive place for Sammy to be and I didn't know of any other good preschools in our area. Well, her physical therapist mentioned one day that her niece goes to a great place in our town and then the next day at the library another mother mentioned the same place. I had never heard of the place before, and I looked at a lot of places this fall when I found her original preschool, so I really felt like I had received two signs that this was the place for her to be. I called them the very next day only to learn that they didn't have any room for the rest of this year, but the teacher agreed to call me later in the day to discuss enrollment for next year and also give me some recommendations for the remainder of this year. As promised she called me after lunch and told me that she had thought more about it and that she could probably make room for Sammy if I was still interested.

I went and checked it out the next day and was so pleased with what I found. It is just a preschool, no daycare is available at the facility. It is Monday, Wednesday, and Friday's from 8:45 am to 11:30 am and best of all her teacher is wonderful. She is a certified teacher that used to teach at Lewiston High School, but when she had kids she decided she wanted to do something part time, so she opened the preschool in her house. Her daylight basement is fully converted into such a cute little preschool. I think it is wonderful that her teacher has been formally trained to work with children and feel confident that she not only has the ability to assess Sammy's capabilities, but that she will tell me if Sammy is behind in anything so that we can work on it now before she starts school. All signs are that Sammy is developing normally, but the doctors indicated to us that we will have to watch for developmental delays in her as the surgery could have caused some damage or the tumor itself could have caused damage.

I feel so fortunate to have found such a great place for Sammy to learn and grow that is still so close to home. After we returned from Boston she was really attached, she literally wouldn't leave my side, so I think it is good for her to be out among children again. She always loved going to preschool before her surgery and I knew it would be good for her to get out of the house! She is also meeting children that she will be going to school with and I am meeting some local parents, which I think is great! The first two days she cried a bit when I left but quickly snapped out of it. When I dropped her off this morning there were no tears! She is doing so well, and I am so proud of my little girl!

Thursday, March 5, 2009

Another Trip to Boston

We returned from Boston yesterday after a long day full of appointments. We met with Sammy's surgeon Dr. Smith for her post op appointment first. All went well there, her scar is healing nicely and he was happy to see such drastic improvements in her physical abilities. He is really wonderful and we had the opportunity to thank him for his wonderful work. He was pretty modest and gave Sammy all the credit, but he is truly amazing! The last time he saw her was when we were in the hospital after her surgery. We then headed over to the Jimmy Fund clinic to meet with her oncologists so that they could evaluate her recovery as well, they last saw her three weeks ago. They also indicated that in the three weeks that had past since our last meeting she had made huge strides in her physical abilities. Finally we met with the opthamologists to see if any damage had been done to her vision by either the tumor or the surgery and I am happy to report that her vision is perfect! She can see very well, and has no limitations to her peripheral vision and no nerve damage. They were very surprised given the type of tumor she had as well as the the type of surgery she went through. They were really very pleased and couldn't stop smiling! Let me tell you there is nothing better than smiling doctors! Sammy really is such a miracle!

For the past couple of days Zach and I have both been pretty nervous. It is really hard to evaluate someones physical abilities when you see them every day. I got myself into a bit of a panic watching her walk and talk wondering if it was actually getting worse. Her walk continually changes as she gains muscle strength, so it never looks the same and it is hard to know if it is getting better or worse. It is kind of like when you live with someone that is gaining weight, it is hard to notice weight gain when you see them every day, but if you didn't see them for a month it would be more obvious. Before her diagnosis, her physical abilities slowly declined and I always had a way to justify why she couldn't do somthing, so I have been really determined not to let that happen again. Unfortunately, that has caused me to watch her too closely and I had convinced myself that she was actually getting worse out of fear. It is amazing what your mind can create when you are scared! This visit was really comforting to both of us as it was clear to the doctors that she was getting better!

So, if all goes well, we won't have to go back to Boston until the end of April/beginning of May when she will have her first MRI. That meeting will be scary, but I really think everything will be okay. Everything has gone better than any of us could have hoped so far, and I have faith that she will continue to do well and amaze everyone!

Sunday, March 1, 2009

A Wish Granted

We found out a couple of weeks ago that Sammy will be granted a wish through The Make a Wish Foundation. I had mixed feelings about it initially, as I had always thought that only kids that had terminal illnesses qualified, but apparently that is not the case. Our social worker at The Children's Hospital brought it up to us first and then several families staying at the Ronald McDonald House indicated that their children had been granted wishes and encouraged us to apply. The parents at the Ronald McDonald House explained that The Make a Wish Foundation's goal is to give children who have been through traumatic medical events a piece of their childhood back, and to provide the children's family with a healing experience. Well every day I see signs that this experience has affected Sammy more than I would have liked. For example, she has turned into a very attached little girl, she doesn't want to leave my side, even to spend time with her Daddy. She used to LOVE to go to preschool and now just the thought of me leaving her there brings her to tears. I know that this will pass and I am hopeful that the wish she receives will begin that process. I know that as a family we could certainly use a fun light hearted event as well!

In terms of what her wish will be, my guess is that we are headed to Disney World given Sammy's love for all things princess, but we won't know for sure until March 14th when the Make a Wish people come to our house to interview Sammy. They want to make sure that they grant her with a wish that is truly her dream come true and they have several questions to ask her to ensure that the wish she gets, is really truly her wish and not our wish! So stay tuned, I will let you know what her wish is as soon as I find out!

In terms of Sammy, she is still doing well. She is in physical therapy to regain strength in her right side and that is going really well. She is already favoring her right hand for things like eating and drawing. I think she has the most work to do on her walk. She is still a bit unsteady, although it is much better than it was pre-operatively. Zach and I have also noticed that she might need a bit of speech therapy as well, as she is still experiencing some weakness on the right side of her face; although it is very subtle. We are headed back to Boston on Wednesday of this week to meet with her surgeon for the standard post op meeting, we will also be meeting with the oncologists so that they can evaluate her progress from a physical standpoint (to ensure she is improving on her right side rather than deteriorating) and we also have an appointment with an eye doctor to see how her eye sight is as they believe the tumor ran along her optic nerve.

So, things are moving along nicely. Sammy remains in good spirits and Zach and I are adjusting to life back at home. Thanks for continuing to follow our story. Please continue to pray for that Sammy continues to improve!

Thursday, February 19, 2009

The Forgotten Child

That is what I jokingly call Adrian, our nine month old son. He really isn't the forgotten child, he is too wild and crazy to even let us think about forgetting him! But none the less, sometimes I feel like we don't think of Adrian as much since Sammy was diagnosed with her brain tumor. So here is a blog all about Adrian!

Adrian is a pain in the ass in so many ways (I say that lovingly), but he is also just about the most lovable cute little thing you can imagine. He insists on sleeping in our bed with us and nurses throughout the night. When I tried to stop feeding him one night, he just stayed awake, didn't cry all night, just flat out refused to go back to sleep. We haven't tried that again. He has been rolling over both ways since he was 12 weeks old, and he started crawling when he was just barely seven months old, and today at nine months he has begun walking. He has been taking steps here and there, but now he has actually started taking 5+ steps at a time. The kid doesn't respond to "no" or he does by stopping what he is doing smiling at you and then continuing to cause trouble. I joke and say that if he was my first child, I don't know that I would have had another.

But like I said, although he can be a crazy child, he is also so lovable and cute. He is tiny, only in the 25th percentile, so to see him walk around is really quite amusing. He also is just getting all of his front teeth, and when he smiles he looks like a little jackolantern! He squeaks and grunts all the time and when we play music he dances. He is also such a little flirt; in the grocery store or doctors office, if he spots anyone he goo's and ga's and gives them big smiles until they pay attention to him! Such a big personality!

So, know you know a little more about my boy. He has been with us every step of the way through this process and although it has been hard on him and us at times, he has been such a little trooper and we are so blessed to have him in our lives!

Thursday, February 12, 2009

A Moment to Breath

So, we just returned from Boston this evening, and luckily our trip was fairly uneventful. We went down last night and stayed at the Ronald McDonald house; our appointments with the oncologist team were this afternoon. The final pathology of the tumor came back as expected with a slight twist. It wasn't a cancerous tumor, but there were two different types of tumor cells in within the tumor. Apparently that is pretty rare, but both types are non cancerous (meaning it won't spread to other parts of her body) and very slow growing types of tumors. That is very good news! There aren't any good types of brain tumors, but the type Sammy has is certainly the type you would choose if you had to.

The next part of our conversation surrounded what type of follow up treatment the team recommended...I am happy to report that at this time the recommendation is NOTHING! Well, maybe saying nothing is a slight exaggeration, as they will do follow up MRI's every three months to make sure the tumor doesn't come back, but we are in a much better situation than we had expected! When I spoke to one of the doctors on the phone last week she indicated that Sammy would "probably benefit from further treatment" and since Sam is too young for radiation, I had assumed she meant chemo therapy. When you first get a diagnosis of a brain tumor, you think it is the end of the world and chemo doesn't seem so bad, but at the point we are at, the thought of my little girl having to go through chemo really breaks my heart, so I was so happy they want to hold off on any further treatment.

At this point, there is certainly a chance the tumor will start to regrow, and that treatment might be necessary in the future, but we don't have to think about that for another three months. We have a few moments to breath!

Stay tuned, I will continue to keep you all updated on Sammy's progress, as well as how we are doing as a family.

Thank you!!!

Saturday, February 7, 2009

Everything Happens for a Reason

So even though this experience is probably the worst experience of my life, I still really believe that everything happens for a reason. I don't fully understand all the reasons my little girl has had to endure all she has but I know that we have all learned many valuable lessons from the experience and I know we will continue to do so.

First, this experience has really made me realize that I need to do more for other people. I always felt shy about reaching out to people who I didn't really know that were going through hard times. I felt like they may think it was strange. However, given what we have gone through, I have to say that the support of complete strangers (as well as friends and family) has really gone a long way in helping us get through this situation. I can't tell you what all the cards and encouraging notes and calls we have received have done for us all! Thank you to everyone that has reached out. In addition we both have a new found gratitude for organizations like the Ronald McDonald house for helping families in times like we are going through. It is amazing how many families have sick children, it is almost a sub culture of people who deal with sick kids on a daily basis. It isn't an easy existence but charities like the Ronald McDonald house make things so much easier.

In addition, I think about all the things that have happened over the last couple of years that have set me up to deal with this situation. My job for example. When Sammy was first born I worked as a HR Manager. Shortly after she was born, I transitioned into a part time position, and then after Adrian was born I started working from home. If I had a regular job during this time, this situation would have been much more difficult. Thank you FISC for your flexibility with me! There are also many other mental shifts I have made that have set me up to deal with this situation as well. When Sammy was first born I couldn't imagine being a stay at home mom, I didn't transition into motherhood very smoothly, but over time I have learned to enjoy being a mom and learned to relinquish control over certain things. Since I have absolutely no control over our current situation, that is most certainly a good thing. Everything happens for a reason.

Finally, I really feel support from family members that have passed on. Zach's mother, who passed away in 2006 has sent many reassuring signs to both Zach and I during this time and my Memere has been here to support us as well. I know that probably sounds corny to many of you, but honestly their support and the signs they have sent to us have been so incredibly real and reassuring.

This situation is certainly not something I would choose, but I know everything happens for a reason and we are choosing to learn as much from this situation as possible. Please keep sending Sammy your positive thoughts and prayers and I KNOW she will be okay!

Friday, February 6, 2009

The next steps...

So, we got a call from the oncologists today and have a meeting with them this coming Thursday in Boston. I don't have a whole lot of new information as the final pathology is not in, but from what they have seen they still think it is a slow growing benign tumor. They did indicate that they felt that Samantha would probably benefit from further treatment, but until they get the final pathology they don't know exactly what that "further treatment" is. They will have all the information for our meeting on Thursday, so we will know exactly what type of tumor it is and exactly what treatment they are recommending.

Stay tuned for more information! Gosh this is nerve racking!

Thursday, February 5, 2009


So we went to the doctor today to have Sammy's bandages removed. Her surgeons in Boston told me to just do it, but I was too chicken, so our PCP was gracious enough to help us out! I'm glad she did because I really wasn't prepared for how big her incision was! In addition, the stitches are huge and look like staples, it really looks like a Frankenstein scar. I assume because it will be under her hair line they didn't take a lot of time to make sure it looked pretty, but wow what a shocker! Sammy screamed when they took the bandages off, but I don't really think it was painful, I think she is just so shell shocked by medical professionals that any time they touch her she cries...poor girl.

On a more positive note, Zach and I are both adjusting to being home and are much more comfortable assessing Sammy. She is still doing well although she is going a bit stir crazy being in the house all day. She has her first physical therapy appointment tomorrow, so that will be good to get her out of the house. Maybe next week we can resume some of our normal schedule, I have just been so reluctant to take her in the car because she got car sick before and it is nerve racking when she throws up, but she did well on the ride to the doctors so I'm hopeful that she is over that!

We keep moving forward, we expect to hear from the oncologists by tomorrow about the pathology of her tumor and a treatment plan. I will keep you all updated!

Tuesday, February 3, 2009

Home Sweet Home?

So we are home! We were released from the hospital yesterday at about 1pm, went to the Ronald McDonald house, packed our stuff and hit the road around 3:30 pm. All went well until we got off the turnpike in Maine when Samantha threw up. Although throwing up after brain surgery is fairly common, it is also a sign of swelling in the brain, which can be life threatening. We stopped in to my parents house to change Sammy and to call the neurosurgeons in Boston to get their thoughts. It was strange because as soon as she threw up, she was fine, she was acting normally and was happy. The doctors said to just keep an eye on her and if she threw up again or started acting strange to call back. We stayed at my parents house for a couple of hours to observe her and she was acting fine so we decided to head for home. We were almost home when she threw up again in the car. Again, she was fine after she threw up and the doctors thought that she was probably just getting car sick. Let me tell you, I was stressed out about coming home and being far from her doctors to begin with, but this just made me about lose it! I couldn't eat or sleep last night at all.

Today Sammy was doing really well, she didn't throw up at all and aside from one episode of her head hurting (because she needed some Tylenol) she has been just fine. She is actually walking around much better than she was before her surgery. I am feeling a little better as the day goes on, but I am still pretty tense. I think it is a combination of worrying about Sammy and thinking I might not recognize symptoms of something bad happening and the realization that my life is completely different. I mentioned before that I don't enjoy change, and this change is pretty monumental. I always feel like this for a couple days when major change occurs, so I'm sure I will be feeling better soon, but I have to say that things have been pretty sucky since we returned home. Thankfully, my mother took the day off from work today and spent the entire day with us, which was hugely helpful. There have been so many people that have been helpful to us during this time, but my parents have really been there for us through everything and I feel so fortunate to have them! Thanks Mom and Dad!

Sunday, February 1, 2009


I am just so relived that Sammy's surgery is over and that it was such a success! Each doctor that comes in to see Sammy is just so amazed that Dr. Smith was able to get the tumor all out! It is funny because I really like the show Gray's Anatomy. For those of you not familiar with the show (I know who doesn't watch it) it is about doctors, and the main characters are residents, all of whom fight over who gets to scrub in on the "good" surgeries. As soon as I heard what the doctors were going to do with Sammy I knew all the residents would be gunning to get in on her surgery...and those of you that know me know that I just can't keep my mouth shut and I called them all on it! After the surgery was over there were residents in our room (they travel in packs) and I said "I bet you all wanted in on this surgery didn't you?" and they didn't deny it! Funny, makes me realize what an amazing surgery my little girl went through!

As far as an update on Sammy, she is really doing wonderfully and I think we are going to be able to go home tomorrow! She is up and moving around, is able to walk, and take all of her medications by mouth. She is off narcotics for pain and is only taking Tylenol. She is such an amazing little girl, but boy does she have my temper and she does NOT like being sick. In fact we got our own single room because she was throwing temper tantrums and keeping our neighbors up! That tensasity I think is what will bring her through this situation...and it might be a pain in the ass some times, but I'm glad she is a little fighter!

We expect to hear from the oncology folks at some point next week and will need to make a trip down to Boston to meet with them to figure out what treatment plan is necessary. The good news is that is she does require chemotherapy, they will most likely be able to do it in Portland with the doctors from Boston still controlling her treatment. She will also need to have MRI's every three months for a period of time to ensure nothing grows back and we will do that in Boston as well. We will also be referred to a local pediatric physical therapist to help Sam regain some strength in her right side (although it is already better than before her surgery).

For now, we are looking forward to going home, although I am a bit nervous about it. It is a little scary to be so far away from her doctors, but I will live! On another note, Adrian has been staying with Zach in the Ronald McDonald house for the past two nights and has slept through the night without eating...keep in mind he has never slept through the night for me! Zach tried to give him some formula and he flat out refused it and went right back to sleep when offered it. I have him with me tonight, so keep your fingers crossed I don't cave when he wakes up and nurse him! :)

I will keep you all updated!

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!