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 mouth...so 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.
Thursday, April 30, 2009
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!
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!
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!
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
Preschool
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!
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!
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!
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!
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