The journey in Boston did not come easily, but together she and I mastered every obstacle thrown our way and came out together victorious. I myself am so proud of her that I too am radiating, just with happiness.
Arley is without a doubt a rock star. She showed Boston that nothing was going to bring her down and even when she was feeling the most icky she would charge on with a huge smile plastered on her face.
Her spirit of life is one that I have never met before, especially with a young child. She handles everything with grace and shows the world just how truly magnificent she is.
Thankfully her side effects were very minimal as compared to others in her shoes. She never got mouth sores, never needed constant feedings through her tube, never lost her appetite or any of the long list of side effects they said she would encounter. I am so proud of myself as well that I stuck to my guns about not trying the feeding tube formula on her and held on with the hope that she would not need it, and she didn't.
I was not about to be pressured into "just try it" for any reason that I didn't believe was truly necessary. I can completely understand where the staff was coming from, however I know my kid better than anyone on this planet and I only wanted to cross certain bridges when we had to. If it made things a tad bit more difficult then together Arley and I would battle it.
I was not about to try and introduce a new formula into her diet that could potentially have the possibility of causing a reaction in her system, especially when if she did, and it resulted in vomiting, I would be the one left to deal with it and thus putting both of us through that didn't seem like a wise choice so I am thankful that it never came to that and I never had to give her any.
There's no saying that she may never need any assistance the more into this journey we go, but I know her limits and when she is already enduring so much, adding another piece into the mix just didn't seem all that important.
Again, I totally understand people just doing "their job," but sometimes you need to back off especially when parents are already on an emotional roller coaster it's not wise to keep pushing and pushing. I wish people in the medical field or in general would realize that.
I do however want to give notice to the staff at the Proton Center. They did a really fabulous job taking care of Arley. Whether it was to entertain her while they were accessing her port, or just making everyday conversation, we truly felt cared for and it was nice getting to know everyone over the seven weeks we were there.
Our stay at Christopher's Haven was nice. The studio apartment was very spacious and most of the other parents and kids we met were very friendly. It would have been nice to have Arley interact with some of the kids more, but we are definite homebodies and the kids were either much younger than her or much older anyways so it didn't really matter one way or the other about making friends.
Christopher's Haven was also the driving force in forming our new friendship with the Buchholz family and learning about the Clay Buchholz Foundation. I am forever grateful for the opportunities Arley and I received from Clay & Lindsay to attend two games at Fenway and be apart of their Buchholz Bowl charity event.
The pair of them are the absolute sweetest and their daughters are so much fun. Arley and Coco really hit it off and I hope that the two of them get to remain friends in life...
Lastly, it is so nice to be home and in our own beds. It will take some getting used to since we have been away for so long, but I am confident that we will be back to our old routine in no time. Arley has the next several days off from treatment and will resume her Chemo on Monday as inpatient.
So needless to say we will be laying kind of low, unpacking, reorganizing and getting things ready for her 3rd birthday in 10 days! I seriously can not wait because she deserves to have the best possible birthday party that I can create.
Well, it is way past my bedtime, so I am off to go snuggle my little lady and to drift off into dreamland. Until next time friends...
Oh and before I go, here are some photos from the going away party & graduation.
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