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...
Monday, November 24, 2014
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...
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...
Tuesday, November 11, 2014
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.
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
Monday, October 27, 2014
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...
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...
Wednesday, October 22, 2014
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...
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...
Friday, October 10, 2014
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...
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...
Sunday, October 5, 2014
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.
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.
Thursday, September 25, 2014
Five months after diagnosis
Here we are, another month down in our long journey with Rhabdomyosarcoma. It hasn't been an easy road, and unfortunately it's just getting harder for the both of us.
Arley's walking is suffering due to the chemotherapy and we are still working on figuring out how to rectify the issue. She goes inpatient on Monday so I'm sure there will be a lot of discussion on it. I still need to make her appointment for next week as well and will try to plan it around her treatment since she will already been in the hospital.
She has slowly started to gain a couple ounces here and there too which is great and she has grown significantly taller too. With that her feet also grew and skipped a whole half size. I bought her brand new size 8.5 sneakers and she never got to wear them, jumped right into a size 9! Everyone thinks shes so much older yet shes barely into 3.
The stress of the whole situation, her being sick and not being able to work is having an effect on me. I literally don't even know what to do anymore as I can't work for at least 9-10 more months. I have to get creative and sell our personal possessions so that we can have extra money. My checking and savings is starting to take a huge hit as the financial burden of the last five months is starting to catch up to me. Medical bills are rolling in and the astronomical amounts are taking a toll.
I am not a person who ever asks for help or asks for handouts. I am too prideful to do it so I'm not sure how long I can keep on that road until it becomes too much for me to handle. People always ask me how to help and I honestly don't know, because I will never ask someone for money or anything because I feel that I would always have that hanging over my head.
Arley did get a really fantastic birthday though, I made sure of it because she deserved it. How I am going to get through the holidays coming up soon I don't even want to think about it. I'm kind of in that bah humbug stage right now and seeing the holiday decorations in stores already is making me sad. I know that my state offers giving trees and such where you can put a childs name out there and someone can adopt and donate whatever the child asks for, but my pride is too high and I feel that it's needed for kids even more less fortunate than us.
Anyway, enough about that. I will figure it out as I always do. My focus now has to be about figuring out how to ensure Arley doesn't stop walking. To ensure that the muscles keep doing their job so that we don't have to take other measures. Everything else will eventually fall into place, I'll make sure of it.
I have a couple photos to add back under her birthday festivities post since I got the photos back from meeting John Cena, so when you get the chance click back a few posts and you will see them all there. Until next time my friends...
Arley's walking is suffering due to the chemotherapy and we are still working on figuring out how to rectify the issue. She goes inpatient on Monday so I'm sure there will be a lot of discussion on it. I still need to make her appointment for next week as well and will try to plan it around her treatment since she will already been in the hospital.
She has slowly started to gain a couple ounces here and there too which is great and she has grown significantly taller too. With that her feet also grew and skipped a whole half size. I bought her brand new size 8.5 sneakers and she never got to wear them, jumped right into a size 9! Everyone thinks shes so much older yet shes barely into 3.
The stress of the whole situation, her being sick and not being able to work is having an effect on me. I literally don't even know what to do anymore as I can't work for at least 9-10 more months. I have to get creative and sell our personal possessions so that we can have extra money. My checking and savings is starting to take a huge hit as the financial burden of the last five months is starting to catch up to me. Medical bills are rolling in and the astronomical amounts are taking a toll.
I am not a person who ever asks for help or asks for handouts. I am too prideful to do it so I'm not sure how long I can keep on that road until it becomes too much for me to handle. People always ask me how to help and I honestly don't know, because I will never ask someone for money or anything because I feel that I would always have that hanging over my head.
Arley did get a really fantastic birthday though, I made sure of it because she deserved it. How I am going to get through the holidays coming up soon I don't even want to think about it. I'm kind of in that bah humbug stage right now and seeing the holiday decorations in stores already is making me sad. I know that my state offers giving trees and such where you can put a childs name out there and someone can adopt and donate whatever the child asks for, but my pride is too high and I feel that it's needed for kids even more less fortunate than us.
Anyway, enough about that. I will figure it out as I always do. My focus now has to be about figuring out how to ensure Arley doesn't stop walking. To ensure that the muscles keep doing their job so that we don't have to take other measures. Everything else will eventually fall into place, I'll make sure of it.
I have a couple photos to add back under her birthday festivities post since I got the photos back from meeting John Cena, so when you get the chance click back a few posts and you will see them all there. Until next time my friends...
Monday, September 22, 2014
Today's Clinic Visit
Today's clinic visit didn't provide me with such good news. I have known for a week now the possibilities of what may be in store next for Arley. I am still coming to terms with the latest as it seems to be a common theme whenever something new is thrown my way about her.
Her walking and chemo combination are the culprit this time. She is still not improving with her walk and this is starting to become concerning. Her doctor watched her walk up and down the hall today and together we have come to the conclusion that some measures will need to be taken.
I am not ready to say exactly what just yet until I have made an appointment for her to be checked out, but once the appointment has been made and I have discussed this at length with the proper people I will relay the news back to you all here.
It's a complete gamble and whether or not this will improve overtime is unknown. Such is life, a complete unknown mystery. I think that is what pisses me off the most about cancer and especially with how rare Arley's is. We (the doctor and I) can't pinpoint how certain things in this journey will effect Arley. As a whole over the last several years all the current research leads him in one direction, but as an individual patient it leads him to another.
What this means for Arley can either be good or bad. Right now we have had to adjust her main chemotherapy to see if it helps the situation (walking) and thus as a result have decreased it to 50% of her normal intake. The hope is that the walking will improve and she can continue to receive it (the one chemo we decreased, remember she gets three kinds) and we need not worry. The downside is she continues to worsen over time and the Rhabdo that we have so far minimized (not yet gone completely) comes back with a vengeance and we have a greater possibility of doing everything all over again with the Proton radiation from Boston included.
Of course I will always remain as optimistic as I can when it comes to everything in Arley's journey, but I can't help but be angry at the fact that this is all happening. For gods sakes she only three years old she shouldn't have to be going through all of this every week and what makes me even more mad is what little funding there is in regards to childhood cancer. Don't get me wrong breast cancer is just as much relevant as any cancer, but the fact that it is so publicized when our children are the future rocks me to the core.
If everyone donated and gave more awareness to childhood cancer then there would be more answers, medicines, techniques, ideas etc on how to cure these kids. I can't even go into any store and find something yellow ribbon related that I can buy to support the cause. It's all pink pink pink. I have hated pink my whole life and even more so now because it seems as though that's all anyone cares about as if breast cancer is THE only cancer out there.
I am sure I know what you are thinking, "How dare she say that breast cancer isn't as much needed for funding as any other cancers out there," and you would be right, however if you knew just how little funding goes to these kids you would probably be angry right along with me. There has been so many advancements for breast cancer that it's time people wake up and put the money towards the future and start thinking yellow and gold and support the causes that truly need it most.
I can't wait 10 years for medicine and research to catch up when my child is currently going through this battle now and I will not apologize for my raging vent either. You have no idea what it's like to watch your child slowly revert back to things she used to do when she was younger because she feels as though that's the only way she has control of the situation. To see her slowly lose her independence that she has had so fiercely since the day she was born.
It's honest to God frustrating to the both of us, but I have to remind myself that while it is very stressful I can not project any of my feelings onto Arley. I don't want her to be any more scared or worried than she already is. People make comments all the time "Oh she's three she won't remember." Um have you met my kid? She's legit one of the smartest on this planet and I'm not saying that because she's my kid, it's because she soaks up everything around her like a sponge and she will literally tell you in great detail what she is going through and did that day. She knows she has cancer, she knows she has no hair, she knows she has boo boos and while it sucks to go through it she's fully aware she needs it to get all better.
Believe me I wish my only worry was what to pack in her school lunch box for preschool everyday, not whether or not she's going to start crawling because the muscles in her legs are weakening due to the chemo. Alas though we will continue this fight we are on and together we will be the best mommy/daughter duo ever and kick the cancer in the ass. Mark my words. Until next time....
Her walking and chemo combination are the culprit this time. She is still not improving with her walk and this is starting to become concerning. Her doctor watched her walk up and down the hall today and together we have come to the conclusion that some measures will need to be taken.
I am not ready to say exactly what just yet until I have made an appointment for her to be checked out, but once the appointment has been made and I have discussed this at length with the proper people I will relay the news back to you all here.
It's a complete gamble and whether or not this will improve overtime is unknown. Such is life, a complete unknown mystery. I think that is what pisses me off the most about cancer and especially with how rare Arley's is. We (the doctor and I) can't pinpoint how certain things in this journey will effect Arley. As a whole over the last several years all the current research leads him in one direction, but as an individual patient it leads him to another.
What this means for Arley can either be good or bad. Right now we have had to adjust her main chemotherapy to see if it helps the situation (walking) and thus as a result have decreased it to 50% of her normal intake. The hope is that the walking will improve and she can continue to receive it (the one chemo we decreased, remember she gets three kinds) and we need not worry. The downside is she continues to worsen over time and the Rhabdo that we have so far minimized (not yet gone completely) comes back with a vengeance and we have a greater possibility of doing everything all over again with the Proton radiation from Boston included.
Of course I will always remain as optimistic as I can when it comes to everything in Arley's journey, but I can't help but be angry at the fact that this is all happening. For gods sakes she only three years old she shouldn't have to be going through all of this every week and what makes me even more mad is what little funding there is in regards to childhood cancer. Don't get me wrong breast cancer is just as much relevant as any cancer, but the fact that it is so publicized when our children are the future rocks me to the core.
If everyone donated and gave more awareness to childhood cancer then there would be more answers, medicines, techniques, ideas etc on how to cure these kids. I can't even go into any store and find something yellow ribbon related that I can buy to support the cause. It's all pink pink pink. I have hated pink my whole life and even more so now because it seems as though that's all anyone cares about as if breast cancer is THE only cancer out there.
I am sure I know what you are thinking, "How dare she say that breast cancer isn't as much needed for funding as any other cancers out there," and you would be right, however if you knew just how little funding goes to these kids you would probably be angry right along with me. There has been so many advancements for breast cancer that it's time people wake up and put the money towards the future and start thinking yellow and gold and support the causes that truly need it most.
I can't wait 10 years for medicine and research to catch up when my child is currently going through this battle now and I will not apologize for my raging vent either. You have no idea what it's like to watch your child slowly revert back to things she used to do when she was younger because she feels as though that's the only way she has control of the situation. To see her slowly lose her independence that she has had so fiercely since the day she was born.
It's honest to God frustrating to the both of us, but I have to remind myself that while it is very stressful I can not project any of my feelings onto Arley. I don't want her to be any more scared or worried than she already is. People make comments all the time "Oh she's three she won't remember." Um have you met my kid? She's legit one of the smartest on this planet and I'm not saying that because she's my kid, it's because she soaks up everything around her like a sponge and she will literally tell you in great detail what she is going through and did that day. She knows she has cancer, she knows she has no hair, she knows she has boo boos and while it sucks to go through it she's fully aware she needs it to get all better.
Believe me I wish my only worry was what to pack in her school lunch box for preschool everyday, not whether or not she's going to start crawling because the muscles in her legs are weakening due to the chemo. Alas though we will continue this fight we are on and together we will be the best mommy/daughter duo ever and kick the cancer in the ass. Mark my words. Until next time....
Tuesday, September 16, 2014
Birthday Festivities
Saturday September 13th
Today my best friend from college flew into town to spend the week with Arley and I. We haven't seen each other in eight months because she lives in South Carolina. I am super excited for her visit because she helps to keep me grounded and sane.
To kick off Arley's birthday weekend (yes my little girl gets the whole damn weekend plus the day of her birthday deal with it!) we are surprising her with a trip to the Mass Mutual Center to watch WWE live and to meet Arley's favorite wrestler John Cena!
Let me just tell you, that John is one of the nicest celebrities I have ever met (and I have had the privilege to meet many in my lifetime). He shook hands with everyone in our party and introduced himself, and when he laid eyes on Arley he immediately got down to her level and engaged her in conversation.
She brought her John Cena action figure and showed it to him and he grabbed it and said that it "was the coolest toy ever," and showed her how to do his famous "Can't see me" move on it. Then he played a couple rounds of peek-a-boo with her and then sat next to her.
They continued their conversation and he told her that he had some presents for her. Inside the bag he produced a hat, t-shirt, arm bands, the program for that evenings matches and his 'Never Give Up' towel. He signed everything for her, plus a WWE Yearbook and 8x10 photo we brought with us.
He then took dozens of photos with us and I got bold and asked if he would take a selfie and he obliged. It was an incredible meeting for Arley and the smiles she had throughout the whole experience was amazing. I am truly blessed that we were able to get the meet to happen. She loved meeting her favorite "fight fight" wrestler and he was so genuine and has a kind heart. I can see why he is one of the number one celebrities kids want to meet and for this very reason I know she will cherish the memory for a lifetime.
We also had the privilege of meeting Tag Team Champions Jey & Jimmy Uso who were also very kind and sweet to Arley. We got their autographs and took a bunch of photos together as well.
Then we headed to our seats (the floor!!!!) and waited for the show to start. I wish I had video of Arley's experience watching her first "fight fight" show because she was so into the whole thing. Yelling, screaming, cheering, clapping the whole nine yards she just ate up everything that was happening around her. I could not have been more happy that this dream could come true for her.
Sunday September 14
Today is Arley's birthday party whoop whoop! Finally, all of my hard work of preparing for a Wild West extravaganza is about to pay off. I had invited at least 25-30 people, but while a good majority of them RSVP'd only 17 actually showed. That was a slight bummer considering I spent a lot of money for food and favors for the kiddos, but we still had a blast without them anyway!
It was a more intimate party and the kids that came had fun playing together and I think (based off feedback) that the party was still a hit regardless of the lack of attendees. Overall I was pleased with the way everything came together and that my vision for Arley's party was able to become a reality. I'm already excited to start planning for next year. (Hey I love to plan a good shindig!)
Monday September 15
Happy 3rd Birthday to my beautiful little lady!
Today we are continuing with the birthday tradition of spending the day at the largest fair in New England known as "The Big E." I was beyond excited for it because Arley is finally going to be tall enough to ride on the kiddie rides! YAY!!!
I also couldn't wait to get my grub on because I hoped to branch out and try new foods this year (didn't happen) and to just relax, have fun, and enjoy celebrating the life of my daughter.
Arley had the best time today. She rode the carousal four times in a row, the motorcycles twice, the bumble bee twice, and the ferris wheel once. She also got to play a couple of games (won once!) and was on her absolute best behavior. If this is any indication of what being 3 has in store for me, then bring it on cause I am ready!
That's it for the updates for now. So happy that I could share with you the last three glorious days that Team Arley Sage had. Until next time my friends....
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