Half a year has gone by....

Don't worry, I didn't forget to write an entry for Arley's sixth month after diagnosis update, I just figured it would be best to wait until I actually had something worth sharing.

Six months.... I know I say this with every monthly update that passes us by, but truly it has been half a year already and I just can't believe it. So much has happened and yet we are only smack dab in the middle of this journey and still have forever and a lifetime to go. 

Arley's hair is officially gone again. Disappeared in a blink of an eye over the weekend. It hurts my heart and soul, but thankfully this time around she barely even noticed. No itchy scalp, just an easy clean up once it was all said and done. She still has some random light wisps, but I wouldn't even count that as remotely anything. Shit man... the hair growth didn't last very long. I knew this would happen and yet I always remain hopeful...

I took Arley on a random road trip into nothingness this weekend. Just escape and drive off into the sunset with no real destinations in sight. We visited Vermont, New Hampshire, and Maine. Legitimately did absolutely nothing special, saw nothing special just the open road, the trees, the water and lots and lots of cars. 

We stayed at a bed and breakfast that was really nice, however the house is older than probably my great grandparents and gave off a spooky vibe which I loved. Totally thought to myself (being as it is almost Halloween) that this would be the perfect plot to a scary movie. (Don't take my idea now folks because it's out in the internet world so I own it ha!) The Innkeeper was a little kooky, but he was nice and made sure we were comfortable and he has this train set up in between some of the rooms that he would have circle around the room for Arley which she loved.

Anyways, to more pressing matters, we had the physical therapy appointment today and Arley will need to have 12 weeks worth of PT in addition to needing braces on her legs to help her with walking. We haven't scheduled the appointment to have them made just yet, but I'm sure that will be done by weeks end when we go back in for our count check. 

I've known about the braces and even hinted towards them several times ever since the idea of her possibly needing them came to light. I'm not sure how I feel about them even though I know it's going to be very beneficial for her to have because the muscles in her ankles are tight and there's weakness in other areas.

It's just one more hurdle to add to the ever growing list of things Arley is going through. Her voice I have noticed in the last week is also starting to go a bit after she eats her food like it did originally months ago. 

This day was also really emotional for a number of reasons and has just solidified my recent thought process as it pertains to things that have been on my mind that I have shared in previous posts. I've just been a big ball of stress and I am ready for this roller coaster to be over and done with. 

Pretty soon another big important part of Arley's cancer journey is the full body scan that will happen at some point next month. I don't know when just yet as we take each appointment at a time and focus solely on that before worrying about the next. This is to determine that our time spent in Boston was worth it and that the Proton beam radiation did it's job. It will also tell us if the cancer has spread and if it did to where and if it has materialized into a new cancer.

Moving forward however I am looking forward to introducing Arley to a lot of the people who have showed her love and support over the last six months at an event I planned up in Massachusetts. It will be good for a lot of them to finally put a face to the person behind the blog and Team Arley Sage page and to see my little princess up close and in person.

Well that's all of the updating I have for now. Until next time folks...

Here's what's new

I realize it has been about two weeks since I last posted an update. Honestly, there hasn't been too much to report on Arley until now. 

For starters, what little hair she did have growing back on her head has started to fall out again. She has little bald patches all over so I guess she has just about as much hair left as her papa Ron does (haha).

You would think that since I have already gone through this with her already that I would be okay with it now and know what to expect, but you would be wrong. It's not anymore easier this go around than the last time in the least. It hurts my heart even though in the grand scheme of things this is so minor. I guess as a mom certain things just strike a cord with you more than other things do.

Secondly, Arley went inpatient this week and it was honestly one of the worst visits we have had in a very long time. She was completely and utterly miserable. She was nauseous, gagged a lot, had a loss of appetite and had next to no energy. This was hard to go through for the both of us, because it caused an extra overnight stay. It's interesting because she has handled everything so well lately that sometimes you forget what its truly like to get knocked on your ass for days.

Not only that, but she has developed a red, I don't even know what you would call it on her face. It shows up randomly out of no where, is warm to the touch and takes it's sweet precious time to go away. Can't really call it a rash because it isn't one, but we are a bit perplexed as to what it could be and what the triggering effect is.

While the doctors on the unit are probably very knowledgeable, they don't know Arley so I called down to the clinic yesterday to see if her doctor was available to come upstairs and see her before he left for the day. I value his opinion and input more than anyone elses especially since he has been there right along with us since day one.

Anyways, he isn't 100% sure on what this is either. Could be an allergic reaction, could be post radiation glow showing up, or could be the start of an infection. She thankfully never spiked a fever (which I can count on one hand the amount she has had in three years) and it did eventually go away, but it came back again not that long ago today. Sigh, can my kid just please catch a break?

Well she actually will be getting a short break from chemotherapy as she gets a break every so many cycles, but still need to go in to have her counts checked to make sure shes staying the course and that her daily injections work. 

Next Monday we meet with the Physical Therapy team to go over Arley's walking issues and see what they suggest doing in that respect. I have an idea on the end result, but you know me, I like to be fully knowledgeable in anything happening before I go ahead and share it. I just don't want anyone to get worked up on this journey without being prepared. It also helps to stop the many questions, comments, phone calls, texts and e-mails that follow when you are really vague. I don't like being vague, but sometimes it's just easier, but you know that good or bad I will always share everything with you.

Speaking of which, I had hoped to conduct a "Day in the life of a chemo patient" segment for you all and document what Arley has to go through weekly with photos and while I did take some, this was just such a crappy visit that it needed a post all on it's own so I will try again next week. 

Side note- I feel like this month has just flown by too darn quick. I can't believe Halloween will be here in 9 more days. I feel so unprepared for everything and it's just another constant reminder that Christmas is right around the damn corner and I am even more less prepared for that. Seriously can I just crawl under a rock until 2015 arrives? Pretty please? Ugh... until next time...

Quick Update

Arley went for a checkup today with her Otolaryngologist (otherwise known as an Ear, Nose, Throat doctor) and everything he checked came out clear.

He looked over her neck and the scar is healing rather nicely and has faded a lot so it's not overly noticeable unless you are looking for it. Her tonsils looked healthy and no growth has formed over them, and he didn't feel any new lumps on her either which is fantastic news.

While it is wonderful news, we still can not be 100% certain that there are no signs of the tumor anywhere until we conduct the full body scan in November. Once that comes back we will know without a shadow of a doubt that everything is in fact clear.

Her next scheduled ENT visit is for six months from now as she should hopefully be finishing up with her chemo late spring/early summer. So this is all very positive news to get us through until the scan.

Arley is still struggling with her walking though and we meet with the physical therapy team in another two and half weeks to determine what the next step in helping to fix her walk will be. Until then we will be continuing with her weekly chemotherapy sessions and await for the next big adventure. Until next time my friends...

I have to get this off my chest...

I have struggled for months about whether or not I should even post the following, but tonight was the final straw and it is what it is. I am human, and if you know me then you know I tell it like it is and never sugarcoat anything. I am a Scorpio and that itself should give you an idea as to the type of person I am.

Lately there is someone in my life who thinks they know everything when it comes to Arley. Reality is they don't, they have no clue. While they themselves are a parent, they have always been married and never had a sick child like the way Arley is sick. Meaning, they have never had to carry the burdens on their shoulders that I do as a single parent, working double duty to be both mother and father.

They have no idea the constant struggles I have and the amount of stress I am under everyday. Not working, bank account dwindling, having to sell off possessions to be able to afford the day to day expenses, never having a true moment to myself away from Arley and away from all things cancer, hospital, and doctor related.

They have no clue what a day in the life of a chemo patient entails. Let me tell you, it's not a barrel of fun. I don't like having my daughter crying because she has to have a needle shoved into her chest, that she's made to wait around for lab work to come back before getting her chemo or that the whole damn process literally takes for-freaking-ever from start to finish every week. How if I am not quick enough with her nausea medicines that we will be surrounded by a sea of vomit.

They have no clue that I lie awake at night usually around the same time as I write this (2-3am) and watch Arley sleep to make sure that everything's okay. To surround her by towels and a bucket because you just never know when her body is going to attack. 

That my newest worry is what's going to happen at her physical therapy appointment at the end of the month and the judgement that is probably going to come with it. Kids have no damn filter, bless them really, but they already notice she has no hair (even though its starting to come back a little) what are they going to say when they realize the next thing to happen?

Maybe if you took a moment and realized that while you may think you know everything, you haven't walked a mile in my shoes, hell you have hardly walked a few simple steps. You watch this all happen from the sidelines, but I literally breathe this cancer business morning, noon, and night just like Arley does. The difference is, I'm an adult and this probably effects me just as much as it does her. 

You have no idea how many tears I shed behind closed doors and wonder how the hell the both of us are going to survive the next six months of chemo, physical therapy and whatever else may come our way. So while you may "mean well" and I use that term very very loosely you just simply don't get it. You are not her doctor, her nurse, or any other medical professional involved in the care and keeping of her.

Don't tell me how she should get her treatments, whether she should be doing this or that, because honestly I discuss everything with her doctor until I am satisfied enough in my decisions and follow that advice. I question everything and don't sign off until I have crossed my T's and dotted my I's.

Go on ahead living in your Peter Pan world, because if you pretend long enough I'm sure eventually you'll believe half the shit that escapes your mouth. Just know this. I am stronger than you, I have gone through more shit in life than you, but there is nothing in this world that will ever bring me down as a mother, a woman, and a fighter as well as advocate for my daughter.

Keep up with the way things are going and you won't be so happy with the outcome. Arley and I didn't ask for any of this, and seriously who would? But you need to have a little more patience, hold your tongue more, and realize finally that you don't know everything, nobody does, and maybe just maybe if you do that and give credit where credit is due that things would be a lot better and run more smoother. Until then, it is what it is and I am perfectly okay with that.