Seven months and a Cat scan

Tomorrow marks the seventh month since Arley's diagnosis. To be honest I have been feeling exhausted with the amount of appointments we have been having lately as well as the fact that for the last two weeks Arley has had some minor hiccups with her nausea medicine not doing it's job properly and causing her to be more gag-a-licious than normal.

We have tried a new medicine that she gets when inpatient, but the nurse doesn't want her to use it too often because its mixed with Benadryl and will as a result cause sleepiness, but if you ask me, I would much rather deal with the sleepiness it causes than the alternative (puking).

Today Arley had her full body CT scan. They scanned her head, neck, abdomen, pelvis, etc to see if the chemotherapy and radiation treatment has done its job. I don't know how long until the results come back, but am hopeful that after Thanksgiving we should have some answers. 

I also talked to her doctor today because it has been almost a month (on Friday) that she had her initial consult with the Physical Therapy team to see about getting the braces on the legs and then I heard nothing. Two weeks ago I called them to figure out when they were going to schedule an appointment, got a huge run around and was told they would contact me with an appointment and I still heard nothing. So today when we went up to the clinic for Arley's blood counts the doctor and I walked to the PT office and got the number for Ortho. Arley now has an appointment for December 1st so hopefully she will get fitted for her braces then. 

Because of this delay I will have to call PT tomorrow and cancel all of her appointments that she has (starts Wednesday) because you can't give someone physical therapy when they don't have the proper equipment they need to learn with. Thankfully the doctor agreed with me 100% so I will have to make that phone call tomorrow morning and get that squared away and then reschedule her appointments once we meet with the Ortho team on the 1st.

Gosh this stuff seriously is exhausting. It shouldn't take this long nor be this hard to get my child an appointment she needs especially since the doctor did his job and sent us over to PT for a consult. Why it's taking so long to meet with Ortho is seriously beyond me, but whatever. I'm on top of it and finally have her scheduled. 

With all that being said, nothing else is new in our world. Just the usual amount of appointments, blood work, shots, chemo, more blood work etc I'm sure you all know the drill by now just as good as us haha. 

We got to spend some quality time with my sister this weekend and took some cute holiday themed photos of Arley which really got me in the mood to want to set up the Christmas tree. Yes and before Thanksgiving too! Shocker! LOL

Have any of you New Englanders ever visited The Enchanted Village at Jordan's Furniture in Avon? If not, then I highly recommend you go whether alone, with your children or grandchildren it is truly spectacular. You take a walk through their village and experience what the Christmas season was like at the turn of the century years ago. I love nostalgic stuff like this and I'm sure you will too!

Speaking of which I need to try and find some more holiday decorations too. I really want to spruce up the place and make this season truly magical for Arley. She deserves it and I know she will really love getting into the spirit this year because she's at the age where I think she can truly understand it. Not only that though, but at my sister's she helped pick out a special ornament and hung it on the tree all by herself which she was super proud of, so because of that I'm starting to slowly get into the spirit of wanting to decorate. We shall see how it goes though.

That's about it for the updates right now, but I wanted to leave you with one of my favorite photos from The Enchanted Village as well as my favorite from the impromptu photo shoot. Until next time friends...

OC Meet & Greet

Words honestly can not describe how loved Arley and I felt this past weekend when we went to Massachusetts for a meet & greet with friends of my dads that have been showing non-stop love and support to Arley and I for the last 6.5 months.

There has been a consistent flow of greeting cards arriving at our front door step every single week. Offering love, support, words of encouragement and many 'Get well soon' that I'm sure we could probably make Hallmark themselves jealous.

It was great to finally have the chance to put the names in the greeting cards to the faces standing before you. Let me tell you though, that even though I and Arley were virtually strangers to them (as they have only heard stories) it was overwhelming how quickly they all swooped in and treated us as though they have known the two of us for a lifetime.

That's the type of people the OC are. Whenever one is down and out they are all very quick to respond and to lend you a hand with whatever you may need no questions asked. It's the heartwarming gestures that remind you that there are good people in this world and that they are willing to come to your aide even if you don't ask for it. 

Arley's story has certainly touched a lot of people and that meet & greet confirmed just that. How seeing "Princess Arley" (as they call her) brought smiles to each of their faces. 

The biggest moment that brought a smile to Arley's face though was in the form of a Queen. I'm sure you know the one, as it has been all the rage with little girls over the past year. Queen Elsa from Frozen. 

Queen Elsa heard the story about Arley and traveled very far from her kingdom in Arendelle just to meet her. The two talked and played and the moment will forever be etched into my heart. 

I seriously can not thank the OC members enough for their kindness and compassion. For coming together and letting me know that while Arley and I are on this journey that we are not fighting it alone and that we have a whole group of cheerleaders supporting us every step of the way.

Thank you again for all that you have done and for keeping Arley and I in your thoughts and hearts. We appreciate it so very much, xoxo