I can't believe it is finally New Years Eve.
This year has flown by so quickly and I feel as though it has aged me several years too. 2014 has been the most challenging year for me on so many different levels yet I am proud of myself and proud of Arley for all that we accomplished.
The start of 2014 offered so many wonderful and beneficial promises. I went back to school to become a Drug & Alcohol Recovery Counselor and started my new job as a Pharmacy Tech. Everything was looking up and heading in such positive directions and then BAM! Life throws you a curve ball like you wouldn't believe and you are left trying to navigate blindfolded in the dark by yourself.
Because of this I learned who my true friends are. Something I never thought I would have to learn when a huge hiccup in life occurs. While it sucks very much to no longer have a relationship with your best friend, sometimes its best to let it go and move on for growing purposes. My life with Arley headed in a direction that some people were better able to handle than others.
On the other hand I have had the pleasure of making new friends some of whom are on their own similar journey with kids that have cancer and together we have formed a bond, kind of like a secret society, one nobody hopes to become a member of, yet is still thankful to have someone there who "knows" and "understands."
I have always been the type to stand up for myself and what I believe in which has helped tremendously when navigating the world of medicine and hospitals. I am Arley's advocate and voice throughout all of this and if something doesn't seem right I question it. If it doesn't feel right I question it. I have, like her doctor said in the beginning, "More knowledge about Rhabdomyosarcoma" than I ever thought possible. If I don't feel as though I am clicking with a nurse or PCA then I have no issue talking to the nurse manager to ensure they don't work with us again. If I feel a doctor on the unit at the time isn't taking me seriously I have no issue with requesting her primary Oncologist to come up and put me at ease.
So many parents are afraid to speak up for fear of stepping on toes. Not me. I have had my daughters life held in the hands of many different people this year and I have no qualms about who I want holding that precious life and if it upsets anyone then too bad not really so sad. I want the best care and treatment for her and I expect the best too and will not settle.
Arley herself has overcome many obstacles this year. Not eating, not drinking, losing weight, gaining weight, radiation treatment, chemotherapy, trouble walking, getting sick, losing her hair. Through it all though she never lost her bubbly sunshine personality, always smiles even when she feels her worst, never missing a beat with the world around her or losing her sense of humor. She is way more wise at 3 then I am at almost 30. I get all my strength these days from her because her little body has gone through so much in the past 8 months than I have in my lifetime and I was always a sick child too, but never on the same scale as her.
2014 provided many ups, downs, smiles, and tears. It has made both Arley and I stronger because of it. We have tested limits and boundaries yet through it all we have so far come out on top together.
I sincerely hope that 2015 offers us new direction and positivity in all aspects of our lives. We will focus solely on ourselves and remaining happy and healthy as opposed to worrying about things that we can not control.
We thank you for being loyal readers for the last 8 months and hope that you continue to follow and support us as we embark on the next phase of our lives.
Goodbye 2014 thanks for the memories. Until next time...
Tuesday, December 30, 2014
Friday, December 26, 2014
Holiday Angels
Oftentimes people forget one of the true meanings of Christmas...
That it is better to give rather than to receive...
I am sincerely overwhelmed by the kindness that was shown to Arley and I by people some of whom we have never met, and I wanted to give them a personal shout out for thinking of us...
Christina Houser Photography
Moe's Auto & Tire
Ms. Leah
Ms. Karri
The Anderson Family
The Clark Family
The Aradei Family
The Taylor Family
The Krinsky Family
The Sullivan Family
Connecticut Children's Medical Center
Because of their generosity I was able to decorate for Christmas and do a little shopping to help make Arley's holiday magical. It's during times like these that you are reminded that there are truly wonderful people in this world that are happy to help out strangers with no questions asked and expect nothing in return. I am humbled by the fact that my daughters story touched their lives so deeply that they took it upon themselves to shop for one more person this holiday season.
It's hard to convey just how much gratitude I have for these people and to get my point across in a blog post, but I just wanted them to know that the impression they have made on me will forever be in my heart for now and for always. This journey has surely been a difficult one, but they all helped to make the burden just a tad bit easier to manage because of this.
Again, thank you so much from the bottom of our hearts.
Love always,
Ashley & Arley
That it is better to give rather than to receive...
I am sincerely overwhelmed by the kindness that was shown to Arley and I by people some of whom we have never met, and I wanted to give them a personal shout out for thinking of us...
Christina Houser Photography
Moe's Auto & Tire
Ms. Leah
Ms. Karri
The Anderson Family
The Clark Family
The Aradei Family
The Taylor Family
The Krinsky Family
The Sullivan Family
Connecticut Children's Medical Center
Because of their generosity I was able to decorate for Christmas and do a little shopping to help make Arley's holiday magical. It's during times like these that you are reminded that there are truly wonderful people in this world that are happy to help out strangers with no questions asked and expect nothing in return. I am humbled by the fact that my daughters story touched their lives so deeply that they took it upon themselves to shop for one more person this holiday season.
It's hard to convey just how much gratitude I have for these people and to get my point across in a blog post, but I just wanted them to know that the impression they have made on me will forever be in my heart for now and for always. This journey has surely been a difficult one, but they all helped to make the burden just a tad bit easier to manage because of this.
Again, thank you so much from the bottom of our hearts.
Love always,
Ashley & Arley
Thursday, December 25, 2014
Eight months and a Merry Christmas indeed
It has been eight months since Arley's diagnosis and this has been by far the hardest month since we heard she had cancer.
I have tried my hardest to get into the holiday spirit for her as I felt this year was extremely important as it has put into perspective just how quickly your world can change and felt that the holiday needed to be celebrated in every sense of the word, but being out of work was proving to be difficult to accomplish that task.
What a lot of people don't know, is that I had to sell a lot of our possessions to be able to afford what little I was able to give to Arley and other family members for gifts. Not my proudest moment, but it is what it is.
I have always been the most generous this time of year by giving to multiple organizations and always try to Pay It Forward as much as humanly possible. A lesson I have taught to Arley since her first Christmas at just three months old. (I feel like it's never too early to teach this lesson) And it had been eating at me as to 'What was I going to do?' this year for Christmas?
Unfortunately though this year was rather slim pickings as far as me affording gifts. I know that it's the thought that counts and the season means way much more than how many gifts one has to open under the tree, but still I just couldn't help feeling as though I was failing somehow.
Around September, shortly after returning home from Boston, I approached the social worker at CCMC and asked if she knew of any places I could get Arley's name out to that could help us out for the holidays. This was a very hard pill for me to swallow. To admit that I needed help as I was just barely able to put together her birthday party. She asked some basic questions about what Arley was into, her clothing/shoe size etc said she would see and we left it at that.
Meanwhile, unbeknownst to me, there were Holiday Angels working very hard behind the scenes to ensure that both Arley and I were taken care of. For starters the photographer that took Arley's horse photos over the summer (Christina Houser Photography) told me that she wanted to help in some way to make our season brighter and put together a Wish List for toys for Arley and she would get the word out. Boy did she ever!
Another friend put the word out that everyone on his Facebook friends list should send Arley Christmas cards to help cheer her up and believe me they did. We have read together every single one.
Lastly Connecticut Children's Medical Center gave Arley the most joy this holiday season when they donated the bike that she has been asking for since Easter.
I have been overwhelmed by the kindness and generosity that has been pouring in ever since. To be put into words is incredibly difficult how my heart has been bursting with just how many strangers have taken to our story and wanted to do something just for us. It's all just so amazing if you ask me and I am very grateful and thankful to the moon and back...
As far as Arley's progress on this journey, this week we took a huge step back and is what also contributed to this being the hardest month for us. This week we were inpatient at the hospital for treatment so the hope for a quick in and out to be home for the holiday was very important to me, but I just had this strange feeling in my gut that something wasn't right. Call it mother's intuition if you will.
To make an incredibly long story short, Arley basically started rejecting her medications, most importantly her nausea meds which helps to bring back her appetite as well as not get sick off the chemotherapy she gets bombarded with. Unfortunately she has either become immune to them, or something much deeper is transpiring because I have never seen her like this.
So pale, so tired, so sick. It made me very worried because this is not something we are used to happening and it's somewhat unheard of to start having these reactions although not uncommon if that makes sense. I made the nurse contact her Oncologist because I needed to hear from him something to put me at ease because the doctor that was on her floor wasn't helping the situation at all. With talking to him we have decided to forgo some of her usual meds and try her on some new ones and see what happens.
One of the down falls with putting Arley on the new medication is that it makes her extremely emotional. kind of like how a pregnant woman gets with all the hormonal changes. She will be in the middle of doing something and for no reason at all start crying and continue to do so for about 10 minutes until she eventually calms down. While it sucks to see her go through this emotional roller coaster, I would much rather wipe away her tears than vomit that's for sure.
Next week I will have to have a very long conversation with her doctor about this and see what we have to look forward to in the next three weeks when she goes in patient for treatment again. I would really like to avoid a repeat.
Because of her over emotional state we haven't really been able to enjoy Christmas just yet. She opened up a few presents and then got too overwhelmed and starting crying so we will have to try again tomorrow or over the weekend when she has time to adjust to what's gone on over the last several days.
With all that being said I'm happy that we are finishing up Christmas at home and in our own bed and not spending it at the hospital like we started out the day with.
Here's to wishing all of Team Arley Sage a very Merry Christmas. Until next time...
I have tried my hardest to get into the holiday spirit for her as I felt this year was extremely important as it has put into perspective just how quickly your world can change and felt that the holiday needed to be celebrated in every sense of the word, but being out of work was proving to be difficult to accomplish that task.
What a lot of people don't know, is that I had to sell a lot of our possessions to be able to afford what little I was able to give to Arley and other family members for gifts. Not my proudest moment, but it is what it is.
I have always been the most generous this time of year by giving to multiple organizations and always try to Pay It Forward as much as humanly possible. A lesson I have taught to Arley since her first Christmas at just three months old. (I feel like it's never too early to teach this lesson) And it had been eating at me as to 'What was I going to do?' this year for Christmas?
Unfortunately though this year was rather slim pickings as far as me affording gifts. I know that it's the thought that counts and the season means way much more than how many gifts one has to open under the tree, but still I just couldn't help feeling as though I was failing somehow.
Around September, shortly after returning home from Boston, I approached the social worker at CCMC and asked if she knew of any places I could get Arley's name out to that could help us out for the holidays. This was a very hard pill for me to swallow. To admit that I needed help as I was just barely able to put together her birthday party. She asked some basic questions about what Arley was into, her clothing/shoe size etc said she would see and we left it at that.
Meanwhile, unbeknownst to me, there were Holiday Angels working very hard behind the scenes to ensure that both Arley and I were taken care of. For starters the photographer that took Arley's horse photos over the summer (Christina Houser Photography) told me that she wanted to help in some way to make our season brighter and put together a Wish List for toys for Arley and she would get the word out. Boy did she ever!
Another friend put the word out that everyone on his Facebook friends list should send Arley Christmas cards to help cheer her up and believe me they did. We have read together every single one.
Lastly Connecticut Children's Medical Center gave Arley the most joy this holiday season when they donated the bike that she has been asking for since Easter.
I have been overwhelmed by the kindness and generosity that has been pouring in ever since. To be put into words is incredibly difficult how my heart has been bursting with just how many strangers have taken to our story and wanted to do something just for us. It's all just so amazing if you ask me and I am very grateful and thankful to the moon and back...
As far as Arley's progress on this journey, this week we took a huge step back and is what also contributed to this being the hardest month for us. This week we were inpatient at the hospital for treatment so the hope for a quick in and out to be home for the holiday was very important to me, but I just had this strange feeling in my gut that something wasn't right. Call it mother's intuition if you will.
To make an incredibly long story short, Arley basically started rejecting her medications, most importantly her nausea meds which helps to bring back her appetite as well as not get sick off the chemotherapy she gets bombarded with. Unfortunately she has either become immune to them, or something much deeper is transpiring because I have never seen her like this.
So pale, so tired, so sick. It made me very worried because this is not something we are used to happening and it's somewhat unheard of to start having these reactions although not uncommon if that makes sense. I made the nurse contact her Oncologist because I needed to hear from him something to put me at ease because the doctor that was on her floor wasn't helping the situation at all. With talking to him we have decided to forgo some of her usual meds and try her on some new ones and see what happens.
One of the down falls with putting Arley on the new medication is that it makes her extremely emotional. kind of like how a pregnant woman gets with all the hormonal changes. She will be in the middle of doing something and for no reason at all start crying and continue to do so for about 10 minutes until she eventually calms down. While it sucks to see her go through this emotional roller coaster, I would much rather wipe away her tears than vomit that's for sure.
Next week I will have to have a very long conversation with her doctor about this and see what we have to look forward to in the next three weeks when she goes in patient for treatment again. I would really like to avoid a repeat.
Because of her over emotional state we haven't really been able to enjoy Christmas just yet. She opened up a few presents and then got too overwhelmed and starting crying so we will have to try again tomorrow or over the weekend when she has time to adjust to what's gone on over the last several days.
With all that being said I'm happy that we are finishing up Christmas at home and in our own bed and not spending it at the hospital like we started out the day with.
Here's to wishing all of Team Arley Sage a very Merry Christmas. Until next time...
Saturday, December 20, 2014
Leg Braces
Arley officially got her leg braces...
To start they look really cool in her team colors and I'm very pleased that they were able to add horses to the back. Definitely spruces them up a bit I think. Although, I'm really not sure how I feel about the whole needing the braces thing.
While yes I know that they are supposed to help with her walking and hopefully to prevent her from all the tripping and falling she does I just hate the fact that this is another thing she has to go through. Granted though having braces is by far the easiest thing to have to endure on this journey, I still don't like it.
I feel as though this is another flashing sign that says "Hey look at me I'm different." As if the bald head wasn't enough of an indication. The two of us just have to get used to them ya know? If I don't make a big deal out of it than neither will Arley. Thankfully though shes still too young to read this blog so I have time to work on my feelings provided you keep them just between you (my reader) and me.
Because of the braces I have to go out and purchase her some new sneakers to wear with them. Cause you know it was only three short months ago that she completely jumped up a half size and all the other new shoes I bought her had to be exchanged for a bigger size and alas I have to go up another half size to accommodate these bad boys.
I think that I would probably feel better about the braces if I wasn't so under the weather right now. I've been sick for 8 days and just discovered that it's a cross between Bronchitis and a bacterial infection and the medicine I was prescribed is causing additional side effects to partner with my lack of sleep. I don't think I have slept very much in the last five days due to hacking up my lungs every chance I get, ya know fun times and all.
Arley was doing very well avoiding the whole sickness thing until two days ago. Now shes a sneezing runny faucet poor little lady. At least shes able to nap and sleep like normal whereas I seem to have a constant rendezvous with Mr. 3am...
I think the closer we get to celebrating Christmas the better I will start to feel because that means we can kiss 2014 behind and look forward to a brighter future named 2015. That's my hope and desire anyways. We just need things to continue on a positive path even though there is still so much uncertainty that lies ahead. I'm still working on getting myself into the Christmas spirit as well. I will get there soon though I promise.
Well, that's all the updating that I have to share for right now, but no worries I will be full of updates in the next few days. Until then, please hope that Mr. Sandman comes to visit me very soon. Thanks!
To start they look really cool in her team colors and I'm very pleased that they were able to add horses to the back. Definitely spruces them up a bit I think. Although, I'm really not sure how I feel about the whole needing the braces thing.
While yes I know that they are supposed to help with her walking and hopefully to prevent her from all the tripping and falling she does I just hate the fact that this is another thing she has to go through. Granted though having braces is by far the easiest thing to have to endure on this journey, I still don't like it.
I feel as though this is another flashing sign that says "Hey look at me I'm different." As if the bald head wasn't enough of an indication. The two of us just have to get used to them ya know? If I don't make a big deal out of it than neither will Arley. Thankfully though shes still too young to read this blog so I have time to work on my feelings provided you keep them just between you (my reader) and me.
Because of the braces I have to go out and purchase her some new sneakers to wear with them. Cause you know it was only three short months ago that she completely jumped up a half size and all the other new shoes I bought her had to be exchanged for a bigger size and alas I have to go up another half size to accommodate these bad boys.
I think that I would probably feel better about the braces if I wasn't so under the weather right now. I've been sick for 8 days and just discovered that it's a cross between Bronchitis and a bacterial infection and the medicine I was prescribed is causing additional side effects to partner with my lack of sleep. I don't think I have slept very much in the last five days due to hacking up my lungs every chance I get, ya know fun times and all.
Arley was doing very well avoiding the whole sickness thing until two days ago. Now shes a sneezing runny faucet poor little lady. At least shes able to nap and sleep like normal whereas I seem to have a constant rendezvous with Mr. 3am...
I think the closer we get to celebrating Christmas the better I will start to feel because that means we can kiss 2014 behind and look forward to a brighter future named 2015. That's my hope and desire anyways. We just need things to continue on a positive path even though there is still so much uncertainty that lies ahead. I'm still working on getting myself into the Christmas spirit as well. I will get there soon though I promise.
Well, that's all the updating that I have to share for right now, but no worries I will be full of updates in the next few days. Until then, please hope that Mr. Sandman comes to visit me very soon. Thanks!
Saturday, December 13, 2014
A Magical Escape
Arley and I just returned home from a donated vacation to Disney World. It was short, sweet and oh so memorable. This is truly one mother/daughter vacation I will never forget for the rest of my life.
One thing to know about me is that I am a huge Disney fan and have been my whole life. Sometimes people don't seem to understand my love for Disney and that's totally fine, but Disney truly is my "happy place" and I try as hard as I can to make it down there at least once a year. It keeps me sane and I love getting swept up into the magic of it all.
To start off our trip we went to Downtown Disney Marketplace and got to spend quality time with two of my friends that I haven't seen for 15 years. We hit it off as if no time had been spared between us and Arley warmed up to them immediately which is kind of unheard of for her.
I took her to Once Upon a Toy where I bought her some Disney themed Mr. Potato Head pieces that I had been eyeing online for months. (Thank you Auntie Debbie!) And we had a bite to eat at my favorite joint Earl of Sandwich. I was very disappointed to find out they no longer make their "Cannonball" sandwich (meatball), however I did find a brand new love for their BBQ chicken sandwich.
We then went shopping at their Christmas shop and I purchased some new ornaments for our tree and even got one personalized for Arley. After a while we went back to our resort to watch the Pretty Little Liars Christmas episode, munch on some pizza and then went to bed to prepare for our first park the next day...
...While waiting to be picked up by my long time family friend George, and to head off to Universal, Arley and I hung out in the lobby until he arrived and watched as a group of young girls stood in a circle and tossed around a stuffed Stitch as if playing a game of hot potato.
Arley watched them very closely and one of the girls asked her if she wanted to play to which she replied "No I'm fine." After a few more minutes of playing the girls stopped and crowded around Arley and asked her her name, how old she was and interacted with her. Cue the instant water works.
One of the moms announced that their bus had arrived and one by one the girls each hugged Arley goodbye. This made me cry harder and one of the moms had the brilliant idea of taking a photo of the girls with Arley in front of the lobby Christmas tree. Another mom came over to me and said how beautiful Arley was and I told her that all of those girls were beautiful because Arley has cancer and usually kids stare at her and make her feel awkward because she doesn't have any hair or they ask whats wrong with her, but none of the girls did that, just treated her like a normal 3 year old.
One of the girls overheard me talking to the mom and came right up to me after their photo and told me how adorable Arley was and that she is sorry she is sick, but that she looks great and she hope she feels better soon. How brave of that girl to do that. Warmed my heart even more and just made me cry harder on the inside. I hope those girls know just how truly wonderful they are to have shared such an immediate bond with Arley...
Not too long after that George arrived and we headed off to Universal Studios to spend the day there to explore Diagon Alley and the rest of The Wizarding World of Harry Potter. Admittedly I am not much a fan of Harry Potter, and even I thoroughly enjoyed seeing all the hard work that George and his team put into bringing the stories and movies to life. You all should be proud of yourselves!
(Side note: I think I am going to start reading the series before I start with the movies because I am truly intrigued now that I have seen everything up close)
We had a blast walking around between both parks and took a break to watch the Macy's parade and Arley got to go on her very first park ride, ET! Which just so happens to be the last remaining original ride at Universal.
It was a great visit as it was Arley's first and had been six years since I was there last. Thank you so much George for your generosity and for being a fabulous host! We appreciate it so much!
(Silly me forgot to take my camera on the ride, so this is available outside near the ride for all to enjoy)
Then we were off to lunch at Tony's Town Square Restaurant which is absolutely fabulous if I do say so myself. The spaghetti and meatballs were delicious. After lunch we headed to some meet & greets with the characters. We met Anna & Elsa from Frozen, got to have a conversation with the new talking Mickey, met Tinkerbell and Buzz Lightyear too.
Further along into our day the second tear jerker moment occurred. We were having dinner at The Crystal Palace which is a character meet & greet with Winnie the Pooh and friends. While the food wasn't as good as Tony's the experience itself was something to cherish for a lifetime.
After Arley met Winnie, Tigger, Piglet & Eeyore, I asked the waitress for our bill. She came back with a card signed by all the characters and a note left by someone wishing us a "Merry Christmas and your bill has been paid for in full." I was completely rendered speechless as to someones kindness and generosity to do that for us especially since The Crystal Palace is an expensive meal. The waterworks began to overflow again and I hope that wherever in the world this person is that did this for us, is showered with tons of good karma!
At this point I am completely blown away by all the magic that has been surrounding us since we got here. It's as if people have been holding onto special Pixie Dust and have been sprinkling it all around wherever we go.
After dinner we headed off to Adventureland so that Arley could ride the Magic Carpets of Aladdin. (Same concept as Dumbo) Once we got off the ride we noticed that Aladdin and Jasmine were standing there getting ready to leave for the parade. Once they noticed Arley waving at them, they invited her in for a special meet and greet even though the Disney Photopass Photographer said it was closed. They made the exception just for her.
Next we went on a few more rides and did a few more meet and greets before it was time for Mickey's Very Merry Christmas Party. We didn't stay for the whole event because it was extremely cold that night and we missed the entire parade because of it, however we did see Mickey & Friends perform as well as Elsa lighting up the castle.
Our last day consisted of a trip to Hollywood Studios so that Arley could meet some of her Disney Jr friends and have dinner with them. We got FastPasses to Toy Story Mania which turned out to be her second favorite ride and we went on it twice back to back. Seeing her face light up as we spun around and played the game made it all so worth it.
Then we went over to the Disney Junior sound stage and watched the performance of Mickey Mouse Clubhouse, Sofia the First, Doc Mcstuffins and Jake & The Neverland Pirates. Arley was so mesmerized by seeing her favorite TV characters come to life and sing the songs they do on the show.
After that we got in line to meet Chip & Dale and then Pluto. As we were waiting in line for Pluto we were told that he was leaving and wouldn't be returning, but was being replaced by Donald and Daisy. As we were gathering up our things to head off somewhere else, a cast member approached me and told me to follow him where he took us to a private area to meet Pluto since we had been waiting in line.
We got super lucky and got to see Chip & Dale again as well as Donald & Daisy. I am truly thankful that even though we had waited to see Pluto the cast member was able to pull us aside and share in a private meeting with the characters.
I then got to talking with one of the cast members about how we were supposed to have a character dinner meal with Doc Mcstuffins and a few other Disney Junior characters when she informed me that they are only available for breakfast and lunch not dinner. Needless to say I was a little heartbroken because we were originally going to have dinner with Cinderella, but because an opening for Hollywood & Vine popped up I took it without realizing that the Disney Jr characters wouldn't be there.
I went over to Hollywood & Vine and spoke to the manager because I wanted to cancel our reservation and not get charged for it and asked if she could call over to the Grand Floridian and see if we could get our previous reservation back and thankfully she did, but we had to make our way over there asap.
(Now this is where the major waterworks and the true Disney magic came to life)
We made our way over to the Grand Floridian and their character meal with Cinderella at 1900 Park Fare. Once inside we noticed that Prince Charming was making his way close to our table.
He fell completely head over heels in love with Arley and it was the most sweetest thing I have ever witnessed. He told Arley that she was the most beautiful princess in all of the land next to Cinderella of course. He taught Arley how to dance (on his feet) and spun her around and even dipped her.
To know that they did that just for her was incredible. That they took the time away from other guests for a brief moment so that they could give Arley their undivided attention warmed my heart and soul. They most certainly didn't have to do that, but it just goes to show what true Disney magic is all about and as you guessed it, cued the immediate water works.
Once back inside I was told that Prince Charming had one more special thing awaiting us and he brought over the chef and a special dessert just for us.
One thing to know about me is that I am a huge Disney fan and have been my whole life. Sometimes people don't seem to understand my love for Disney and that's totally fine, but Disney truly is my "happy place" and I try as hard as I can to make it down there at least once a year. It keeps me sane and I love getting swept up into the magic of it all.
To start off our trip we went to Downtown Disney Marketplace and got to spend quality time with two of my friends that I haven't seen for 15 years. We hit it off as if no time had been spared between us and Arley warmed up to them immediately which is kind of unheard of for her.
I took her to Once Upon a Toy where I bought her some Disney themed Mr. Potato Head pieces that I had been eyeing online for months. (Thank you Auntie Debbie!) And we had a bite to eat at my favorite joint Earl of Sandwich. I was very disappointed to find out they no longer make their "Cannonball" sandwich (meatball), however I did find a brand new love for their BBQ chicken sandwich.
We then went shopping at their Christmas shop and I purchased some new ornaments for our tree and even got one personalized for Arley. After a while we went back to our resort to watch the Pretty Little Liars Christmas episode, munch on some pizza and then went to bed to prepare for our first park the next day...
...While waiting to be picked up by my long time family friend George, and to head off to Universal, Arley and I hung out in the lobby until he arrived and watched as a group of young girls stood in a circle and tossed around a stuffed Stitch as if playing a game of hot potato.
Arley watched them very closely and one of the girls asked her if she wanted to play to which she replied "No I'm fine." After a few more minutes of playing the girls stopped and crowded around Arley and asked her her name, how old she was and interacted with her. Cue the instant water works.
One of the moms announced that their bus had arrived and one by one the girls each hugged Arley goodbye. This made me cry harder and one of the moms had the brilliant idea of taking a photo of the girls with Arley in front of the lobby Christmas tree. Another mom came over to me and said how beautiful Arley was and I told her that all of those girls were beautiful because Arley has cancer and usually kids stare at her and make her feel awkward because she doesn't have any hair or they ask whats wrong with her, but none of the girls did that, just treated her like a normal 3 year old.
One of the girls overheard me talking to the mom and came right up to me after their photo and told me how adorable Arley was and that she is sorry she is sick, but that she looks great and she hope she feels better soon. How brave of that girl to do that. Warmed my heart even more and just made me cry harder on the inside. I hope those girls know just how truly wonderful they are to have shared such an immediate bond with Arley...
Not too long after that George arrived and we headed off to Universal Studios to spend the day there to explore Diagon Alley and the rest of The Wizarding World of Harry Potter. Admittedly I am not much a fan of Harry Potter, and even I thoroughly enjoyed seeing all the hard work that George and his team put into bringing the stories and movies to life. You all should be proud of yourselves!
(Side note: I think I am going to start reading the series before I start with the movies because I am truly intrigued now that I have seen everything up close)
We had a blast walking around between both parks and took a break to watch the Macy's parade and Arley got to go on her very first park ride, ET! Which just so happens to be the last remaining original ride at Universal.
It was a great visit as it was Arley's first and had been six years since I was there last. Thank you so much George for your generosity and for being a fabulous host! We appreciate it so much!
Day three of our trip consisted of going to Magic Kingdom which is always my favorite park out of all of them. Especially since there are more rides for Arley to enjoy at such a young age than any other park. The number one ride she had been dying to go on for weeks was Dumbo. Thankfully we scored a FastPass for it so she didn't have to wait too long.
Then we were off to lunch at Tony's Town Square Restaurant which is absolutely fabulous if I do say so myself. The spaghetti and meatballs were delicious. After lunch we headed to some meet & greets with the characters. We met Anna & Elsa from Frozen, got to have a conversation with the new talking Mickey, met Tinkerbell and Buzz Lightyear too.
Further along into our day the second tear jerker moment occurred. We were having dinner at The Crystal Palace which is a character meet & greet with Winnie the Pooh and friends. While the food wasn't as good as Tony's the experience itself was something to cherish for a lifetime.
After Arley met Winnie, Tigger, Piglet & Eeyore, I asked the waitress for our bill. She came back with a card signed by all the characters and a note left by someone wishing us a "Merry Christmas and your bill has been paid for in full." I was completely rendered speechless as to someones kindness and generosity to do that for us especially since The Crystal Palace is an expensive meal. The waterworks began to overflow again and I hope that wherever in the world this person is that did this for us, is showered with tons of good karma!
At this point I am completely blown away by all the magic that has been surrounding us since we got here. It's as if people have been holding onto special Pixie Dust and have been sprinkling it all around wherever we go.
Next we went on a few more rides and did a few more meet and greets before it was time for Mickey's Very Merry Christmas Party. We didn't stay for the whole event because it was extremely cold that night and we missed the entire parade because of it, however we did see Mickey & Friends perform as well as Elsa lighting up the castle.
Our last day consisted of a trip to Hollywood Studios so that Arley could meet some of her Disney Jr friends and have dinner with them. We got FastPasses to Toy Story Mania which turned out to be her second favorite ride and we went on it twice back to back. Seeing her face light up as we spun around and played the game made it all so worth it.
Then we went over to the Disney Junior sound stage and watched the performance of Mickey Mouse Clubhouse, Sofia the First, Doc Mcstuffins and Jake & The Neverland Pirates. Arley was so mesmerized by seeing her favorite TV characters come to life and sing the songs they do on the show.
After that we got in line to meet Chip & Dale and then Pluto. As we were waiting in line for Pluto we were told that he was leaving and wouldn't be returning, but was being replaced by Donald and Daisy. As we were gathering up our things to head off somewhere else, a cast member approached me and told me to follow him where he took us to a private area to meet Pluto since we had been waiting in line.
I then got to talking with one of the cast members about how we were supposed to have a character dinner meal with Doc Mcstuffins and a few other Disney Junior characters when she informed me that they are only available for breakfast and lunch not dinner. Needless to say I was a little heartbroken because we were originally going to have dinner with Cinderella, but because an opening for Hollywood & Vine popped up I took it without realizing that the Disney Jr characters wouldn't be there.
I went over to Hollywood & Vine and spoke to the manager because I wanted to cancel our reservation and not get charged for it and asked if she could call over to the Grand Floridian and see if we could get our previous reservation back and thankfully she did, but we had to make our way over there asap.
(Now this is where the major waterworks and the true Disney magic came to life)
We made our way over to the Grand Floridian and their character meal with Cinderella at 1900 Park Fare. Once inside we noticed that Prince Charming was making his way close to our table.
He fell completely head over heels in love with Arley and it was the most sweetest thing I have ever witnessed. He told Arley that she was the most beautiful princess in all of the land next to Cinderella of course. He taught Arley how to dance (on his feet) and spun her around and even dipped her.
He even went to find Cinderella and bring her over so that she could meet the new Princess in town. That wasn't it though, Prince Charming had a few other ideas up his sleeve too. One of the cast members came over and said that Cinderella and Prince Charming were requesting our royal presence outside on the balcony and Arley had her own special private meet and greet with them.
Once back inside I was told that Prince Charming had one more special thing awaiting us and he brought over the chef and a special dessert just for us.
To know that everyone went above and beyond to make Arleys night special is amazing. I plan to print out some of these photos and write a letter to the President & CEO of Disney to let them know just how truly touched we were for this visit and how we were literally treated like royalty wherever we went. Again, I have been to Disney many times in my life time, but this visit seriously takes the cake on all of them. I sincerely hope that Cinderella and Prince Charming know how much of an impact they made on both Arley & I. It was all she could talk about to anyone she came in contact with at the resort and airport.
I am so impressed and literally don't have any more words to express with how magical this vacation was for us. It came at just the right time and offered just the right amount of magic to last us until our next visit. Thank you so much to everyone who played a role in allowing Arley and I to have this vacation and to create these everlasting memories.
Tuesday, December 2, 2014
What do I make of this?
I never know where to start when updating about certain aspects of Arleys journey. I type, delete, start again, delete and keep going until I feel as though I have written something worth publishing. Here goes...
There's some good news and some bad news. The good news is that the Rhabdomyosarcoma has NOT spread to anywhere else in her body. It has remained isolated to her neck which is fantastic so we will continue to treat it with the same regime that we have been on for the last seven months, but the bad news has been very hard to swallow.
The CT scan has basically shown some tissue growth in her face. (The same side as where the cancer originated from) Her doctor is unsure if it is cancerous and there are very few options right now. We have to either wait to see if it starts to grow bigger and take immediate action if it does OR wait three months from now and do either another CT scan to see whats happening or a PET scan.
Her doctor doesn't want to do the PET scan because of the radiation involvement and why put Arley through something that may not be necessary, however the CT Scan may also not give us the specific answers he desires. So now, we have to sit and wait. Wait to see if the tissue blossoms into some type of mass that is easily seen on the exterior of her face or wait until enough time has passed and decide which of the scans will be more beneficial in providing the answer to know what exactly it is.
I hate the fact that I don't know what's going on and what the cause is and that with one good revelation a bad one soon followed. Seriously, can Arley just catch a break for once? This poor kid keeps having to go through one battle after another after another and it's just NOT FAIR! I'm over this, I'm in need of a vacation away from life and hospitals so that for one moment Arley and I can focus on something positive and happy.
Can someone make that happen please? Just saying....
Sigh....
Moving on... the process of making the casting for Arley's braces was really cool. First they marked her legs and foot for measurements and then put this white stocking on her leg that reached from her knee cap to her toes. Soaked an ace bandage type adhesive in water and then wrapped it around her legs one at a time. Once it dried up, Arley helped the doctor cut the castings off which she got a kick out of it. We would have been able to pick them up on Monday, but because I wanted the braces to be spruced up for her itll take a couple weeks to get them in. She got to pick a special color and image to be placed on the braces so they will be unique and hopefully will help her want to wear them.
That's all the updates I have for right now, it's been a very long and exhausting couple of days as was as emotional with the new findings or lack thereof with Arley's face, so for now this is all I have to share. Until next time...
Arley and I have had a rough couple of days. Yesterday was very long for us. We spent four hours in clinic before our appointment with Orthopedics to have her fitted for braces. Before I go into that process though, allow me to update you on the results of her CT scan.
There's some good news and some bad news. The good news is that the Rhabdomyosarcoma has NOT spread to anywhere else in her body. It has remained isolated to her neck which is fantastic so we will continue to treat it with the same regime that we have been on for the last seven months, but the bad news has been very hard to swallow.
The CT scan has basically shown some tissue growth in her face. (The same side as where the cancer originated from) Her doctor is unsure if it is cancerous and there are very few options right now. We have to either wait to see if it starts to grow bigger and take immediate action if it does OR wait three months from now and do either another CT scan to see whats happening or a PET scan.
Her doctor doesn't want to do the PET scan because of the radiation involvement and why put Arley through something that may not be necessary, however the CT Scan may also not give us the specific answers he desires. So now, we have to sit and wait. Wait to see if the tissue blossoms into some type of mass that is easily seen on the exterior of her face or wait until enough time has passed and decide which of the scans will be more beneficial in providing the answer to know what exactly it is.
I hate the fact that I don't know what's going on and what the cause is and that with one good revelation a bad one soon followed. Seriously, can Arley just catch a break for once? This poor kid keeps having to go through one battle after another after another and it's just NOT FAIR! I'm over this, I'm in need of a vacation away from life and hospitals so that for one moment Arley and I can focus on something positive and happy.
Can someone make that happen please? Just saying....
Sigh....
Moving on... the process of making the casting for Arley's braces was really cool. First they marked her legs and foot for measurements and then put this white stocking on her leg that reached from her knee cap to her toes. Soaked an ace bandage type adhesive in water and then wrapped it around her legs one at a time. Once it dried up, Arley helped the doctor cut the castings off which she got a kick out of it. We would have been able to pick them up on Monday, but because I wanted the braces to be spruced up for her itll take a couple weeks to get them in. She got to pick a special color and image to be placed on the braces so they will be unique and hopefully will help her want to wear them.
That's all the updates I have for right now, it's been a very long and exhausting couple of days as was as emotional with the new findings or lack thereof with Arley's face, so for now this is all I have to share. Until next time...
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