Two months after diagnosis

Here we are two months after Arley's diagnosis of Rhabomysarcoma. 

In the last month we have had more in-patient hospitalizations than the month before. The reason for that is because Arley has gone on several hunger strikes after her routine visit which requires her to have extra stays in the hospital to monitor her weight loss and to ensure that she doesn't become dehydrated while on strike. (She has twice actually)

She also has had a change in her voice that comes and goes without rhyme or reason. Lately I have noticed it happen when she is eating it becomes hoarse and sometimes shortly after it changes to very delicate. We were told that this could be a side effect of her chemo, so we will just continue to monitor this closely as well to make sure it doesn't get worse.

We are still very humbled by all of the love and support received as well. So many people love her and send her Get Well cards in the mail almost daily that it's something fun for her to look forward to. I read each and every one to her. We were also very overwhelmed by all of the local community support we received with donations for her benefit and also when we received donations from people with whom we have never met, but heard about her story through the grapevine.

My friends still continue to amaze me all the time. They have rallied around us and ensure that we are taken care of often. Whether it be a rare moment out for me, or sending care packages to make Arley smile. My heart is overflowing with the amount of love that has been shown to us. I truly don't know what I would do without all of my friends whether they are friends I happen to know in real life, or friends that I have made over the years out in cyberspace.

Unfortunately though, I recently had to let a friendship dissolve because the choices this person made showed that their priorities in life didn't match up with mine and so it was best to let them go. I am satisfied with my decision as my focus is on the health & happiness of my child first and foremost and if someone chooses not to be supportive and understanding then there is not much else I can do, especially when given my situation I still went above and beyond to help this person and its not appreciated.

Anyway, I won't let one bad apple ruin or overshadow all of the truly wonderful people out there that are involved in our lives whether directly or indirectly. I seriously can't thank people enough and wish there was a word that could better express my appreciation and gratitude than that.

As June starts to wind down and July being right around the corner, our focus has started on our preparations for Boston. We have secured our home away from home which is fantastic and a huge weight lifted off my shoulders, so basically all I have left is to just pack up all the stuff we plan on bringing with us and getting that ready as soon as possible so that we can enjoy what little time we have left here in Connecticut uninterrupted. 

Tomorrow Arley has a surprise photo shoot that she knows absolutely nothing about. Fingers crossed that she has a good start to the day so that she can actually enjoy it. This photo shoot has been donated to us by a good word put in by my brothers employers. I can't wait to enjoy the moments with Arley and then to see the fabulous work the photographer does. From what I have seen so far of previous shoots she is simply amazing and I expect nothing short of brilliant from her because she is just THAT good! 

Also, something VERY exciting is in the works for Arley that she also has no idea about. I have to keep mum on what it is though just in case it doesn't pan out. (I don't see why it wouldn't though!) She is going to be so excited if all goes according to plan. May not happen until just before her 3rd birthday, but that's okay with me!

Hopefully I will have a sneak peek to share with you all tomorrow, but being a super fabulously talented photographer, she is also a mom of two young girls herself so it may not be right away, but I assure you as soon as I can share something with you my lovely readers I will do so immediately! Until next time friends.... xoxo