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!