Four months after diagnosis

I seriously can't believe that it has been only four months since Arley's diagnosis of Rhabdomyosarcoma. Seems like such a short amount of time and a lifetime ago all at once. (I know I said the same thing last month, but it's true)

This month has definitely been one of the hardest for us. My very independent toddler has become very clingy and super emotional. Can't say I blame her, but at the same time has made things more difficult. Just even leaving her to play while I run to the bathroom quick isn't as easy as it used to be. She needs to be with me ALL.THE.TIME whether if she's around people she knows or not.

I constantly have to remind myself that this all can't be easy for her, but at the same time mama just wants to pee for 5 minutes and have peace. Aside from being clingy and emotional she needs to have everything done for her. She no longer goes and grabs whatever toy she wants to play with, mama has to get it for her. Not always, but there has been a huge increase on dependency and a huge decrease of doing things on her own. I guess I got so used to her occupying herself when necessary that it's become harder on the both of us when a task usually so simple can turn into a meltdown if not done fast enough or the right way.

It has become exhausting and I don't know what the reasoning is. I don't know if I can really use the excuse 'It's because we are in Boston' anymore because let's face it we have been here for six weeks, but I know she misses her grandparents, her Papa (my dad) more than anything, so if we can just make it through Labor Day weekend then we will be back home in no time.

As for her G-Tube, we use it every single day now. She is on round the clock Zofran (nausea meds) because she gags at literally everything and she needs it to survive the day. Also if she isn't drinking enough then I can pump her little belly with some liquids so I don't have to fight her on drinking. I measure it out, pump it in and shes done. She also likes to help do it with me now and even get's to try it on mama afterwards.

Radiation however is not going very smoothly right now. She has burns on the entire left side of her neck and it has traveled up to the middle of her left cheek. It's really red/pink, raw, peeling and the most horrendous looking aspect of the cancer we have seen to date. She knows it's there, but it doesn't exactly hurt her which is a plus.

Because of this her voice has been very raspy and she has lost it a couple of times. It's very hard to hear her so you have to lean in real close. Her walking is still unsteady. She trips a lot, but I am usually (right there) to catch her so she doesn't normally fall, but she has a few times. 

She has been complaining though about her eyes, so I will need to discuss that at treatment today and see if we can get her eyes checked either before we leave here or upon returning home to CT. I haven't heard of any relation that could effect the eyes, but will have it looked into regardless.

Everyone that meets her still loves her. She has been mistaken for a boy a few times recently though. It's been fun coming up with a snide remark to these people. Like seriously you don't notice the flowers on her shirt, skirt, and shoes? A father the other day asked me "Is she a?" "Yes she's a girl. While I have no issues with dressing my son in pink and girly, it wouldn't be my first thought of the day unless asked." Sheesh


Anyways, I am very happy to see August on it's way out of here. I also know that I tend to repeat myself which is one of my pet peeves, but I can't help it. I just want to give my daughter the best third birthday next month because she deserves it and get us back into our usual (not so normal) routine. Until next time friends...