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!

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!!!

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!

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!

Frankenstein

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!

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!

Relief!

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!