Sayonara Summer!

I had high hopes for this summer, I truly did. I thought, we had two awful summers health wise, we couldn't possibly go for a third. Or could we?

Sigh.....

Arley has had some minor setbacks that we have been dealing with since the end of May that resulted in an impromptu visit to the emergency room when she spiked a fever and continuously kept vomiting despite our best efforts to keep it at bay.

As the summer wore on it didn't get any better and still hasn't, but with time I'm hopeful that it will fix itself. I haven't told too many people, even some of those in our inner circle don't know. It's not that I don't want other people to know, it's just a lot of people don't understand and I'm tired of the unsolicited advice I get even though it's full of good intentions. 

The thing of it is, and what people fail to realize is, Arley is not your typical kid when it comes to certain things and I accept that. With having cancer it has also magnified those things even greater. What works for Susie Sunshine down the street, won't work for her. Believe me, I have tried everything.

I will say though, and my wallet growls at me every time, but bribery has helped a little bit with the progression. Very, very slowly we are seeing positive results, but we are still no way near where we should be. Admittedly I'm usually not the type of parent who will use bribery for things to get done, but when it comes to ones health I will do whatever works. 

Learn to pick your battles with kids folks, seriously...

Needless to say, Arley has a fabulous Shopkins collection right now that she is quite proud of, compliments of the one and only Youtube, and it gets her excited and wanting to work hard at being successful which is always a positive in my book.

Currently we are awaiting our next round of scans to be done conveniently on the first day of preschool so naturally we will be missing it. Sad face. We then have to schedule three additional appointments with different doctors/teams to focus on some other issues that still haven't improved yet and could take up to a year to rectify itself. 

On a positive note though, Arley still maintains her upbeat, comedic personality and acts as though nothing fazes her in the slightest. She's looking forward to going to preschool and I hope to enroll her in dance if our schedule and budget allow for it. Plus she will be hanging out with the Hartford Hawks softball team again in a couple of weeks as well as celebrating her 4th birthday. We have a ton of exciting things to look forward to as we head into the cooler months and I'm ready for it. Until next time I bid you adieu. 


PS- Despite all that has gone on medically with Arley we still tried to make the most of our summer. We attended almost every single Bristol Blues baseball game, went to Lake Compounce, The Bronx Zoo, Boston, Museum of Science, Imagine Nation Museum, Peach and Strawberry picking, Jumpin Jammin, Flight Trampoline, the Library and a few other places I seem to have forgotten. 

One thing though that is certain, I will never allow the journey we are on to bring us down. Always moving onward and upward, conquering each battle as it arises.

Goodbye to Blue

Tonight was the final game of the regular season for the Bristol Blues. After the last strike out, it hit me that for now the games are over until next year and the wonderful experience we had has come to an end. 

I never thought in our wildest dreams that meeting some of the players for the first time back in June at Jump-N-Jammin would have turned into what it did for Arley. I knew upon discussions with some of the Blues staff that they wanted to invite Arley out to a game, meet the players, and have her throw out the first pitch, but I never excepted just how big of an impact that the team themselves would have on Arley and in turn her on them.

Every single game we attended Arley was able to go out on the field and say hello to the boys. Whether they were in the middle of warm-ups or tossing around a ball, they always stopped what they were doing to make sure they greeted her with open arms, smiles, hugs, and high-fives.

Not only did all the players acknowledge her, but all the staff knew her name and even some of the other ballpark goers which was always a pleasant surprise. In her own right she was kind of a mini celebrity.

Eventually, as time went on, Arley developed a liking to certain players and I have dubbed them together 'The Fab 5.'

These four guys have been truly amazing, made the biggest impact on Arley and held the closest bond. Christian Budzik (LL) was her #1 buddy. He took her into one of the bounce houses, caught her first pitch, and allowed her to douse him with water balloons during one of the mid-inning games. Gerrad Rohan (TR) and Steve Wallace (BR) presented Arley with the team jersey and Dominic LoBrutto (TL) is always one to have long conversations, take her running around the bases or watch fireworks. 

I hope their parents know that they did a good job raising these boys. The kindness and compassion they showed to the both of us was quite remarkable. I know it may have seemed interesting to some that a 3.5 year old girl was a member of the team, but Arley has such a love and passion for the game of baseball and has enjoyed cheering on "her boys" all summer.

This would also not have been possible if it wasn't for Director of Interns Briana Root and Director of Public Relations Joe Boyle. I thank the two of you immensely and have enjoyed getting to know you both all season. If there was ever a need for anything these two made it happen and they always made sure that no matter what they were doing, they would check up on us throughout the game, or sit and chat.

Another special thank you goes out to the General Manager Rick Muntean and the rest of the Blues ownership for also playing a role in allowing Arley to become a Bristol Blue. 

This summer has certainly been one I am sure Arley will never forget, and one that I know I will cherish forever because despite what Arley has been going through, the Bristol Blues made sure that was the last thing either of us thought about.

So from the bottom of our hearts, please know that we love you, we thank you, we wish you all nothing but success for the future and hope that you all have long careers and make it to the big leagues. See you next season and good luck in the playoffs. 

4th of July Blues

This time last year Arley was scheduled to have her G-Tube surgery and we were in the process of packing up our life to temporarily make the move to Boston so she could receive radiation treatment in conjunction with chemo therapy. 

Currently I'm experiencing a bit of deja vu because we are getting ready to go back up to Boston this week for an appointment with her radiation doctor as well as a charity event with the Red Sox and an alumni luncheon at (our home away from home) Christopher's Haven.

It truly seems like a lifetime ago, but here we are once again making our little trek out to Boston. I'm not entirely sure what this visit will entail as far as meeting with her team out there, but I will update you all as soon as I know anything.

Also, this time last year Arley wasn't feeling up to celebrating any 4th of July festivities, but this year...... this year was simply amazing and it was all thanks to the Bristol Blues Baseball team that Arley was so lucky to meet several days ago....



On June 29th I took Arley to one of our favorite bounce house hangouts where she had the pleasure of meeting Bristol's new amateur baseball team. I had spoken to the owner of the bounce house privately a few days prior to ask permission if I could bring Arley by early as a precautionary measure and she agreed. When we got there though the event was in full swing and I wanted to know if it would still be possible for her to have some one on one time with the players to meet them and get their autograph before the event was over and I was pointed into the direction of their Director of PR Joe and he and I got to talking.

Next thing I knew he and the Director of Interns Brianna, were coordinating bringing Arley to a game and allowing her to throw out the first pitch which was fantastic! Arley also got a chance to have her picture taken with some of the players and they autographed her baseball for her too. 

A few days go by and I receive a call from the Blues saying that they wanted to invite us to their 4th of July game and that they had a lot of special surprises in store for Arley. Along with throwing out the first pitch, they were going to add her to the roster as an official team member for the remainder of the season, give her season passes to every game and even get her an official team jersey.

Holy cow! I never imagined that it would take off in the direction that it did, but I am super grateful, humbled, and appreciative that the entire team has taken Arley under their wing and allowed her to be apart of their team especially since she loves baseball so much. 

It just goes to show how very much involved in the community these guys are and they themselves deserve a lot of love and support. Below are some of the photos from this evenings game against the Navigators. (Which the Blues crushed them 7-zip by the way!)

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Summer

It's officially summer and I am trying my best to embrace the warmth! Of course I much prefer the Spring and Fall months because I enjoy feeling the cool soft breeze that surrounds me during that time, but this year I am hoping to finally be able to enjoy all that the Summer season has to offer.

For the last two consecutive years Arley has been very sick and unable to enjoy much of anything from May to September so it's my personal goal to make sure that no matter what happens, we WILL have an amazing summer. So far, so good. Fingers crossed.

We started off the season by going to our favorite local Pick-Your-Own Orchard and the strawberries this year are plentiful. So big, ripe and red. Arley had a blast picking out a container full to bring back home. While neither of us eat them, she did at least taste it so that's positive even if she didn't like it. 

I take her to this Orchard several times a year. We go there to pick apples, peaches, and pumpkins however I'm thinking of taking her to pick some blueberries this year when they are ripe in July.

Our second fun event we did was visiting a local nearby park that she really enjoys. It has a two separate play areas. One for ages 2-5 which is falls into and one for older kids. I like how they have one of each because whenever I take her to another park we used to frequent the older kids wouldn't be mindful of her being so little and would practically knock her over and not think twice about it, so this is a much better and more fun alternative. 

Third we met up with some of our play group friends that we haven't seen in a year and had a fun time hanging out at the library and then we attended the Strawberry Festival that the Orchard I mentioned above hosted and for the first time ever she got her entire face painted. Usually she goes for the hand, arm, leg, or foot, but not this time! She sat still the whole time and it came out awesome! I am one proud mama because this is a huge step for her.

Also, just the other day we went to an indoor bounce house that we haven't been to in a while with our play date friends and had so much fun! The only downside was the older kids were not mindful of Arley needing to take her time to climb up to the top before sliding down and would climb practically on top of her. Their parents never said anything about it either which is annoying because if you see a younger kid trying to figure things out, let them. I mean at one point they were just learning too!

Anyway, we have a long bucket list of fun we plan to accomplish from going to the movies, museums, amusement parks, Boston, picnics, crafts, bike riding, s'mores making, the list is almost endless. Be sure to keep checking back frequently to see what all Arley and I are up to.

Next up on the Rhabdomyosarcoma journey is a year post radiation check-up.

I'll never forget

I'll never forget the week or so prior to Arley being diagnosed with cancer. I was probably on Facebook or checking out some other newsworthy site when I stumbled across the story of Savannah and the #StolenMoments campaign her dad created. Aside from raising money for a wonderful cause, the original story simply stated that he wanted others to share their 'Stolen Moments' with their children. Let them stay up late on a weeknight, have ice cream for breakfast, or literally stop and smell the roses. 

I don't recall how soon after reading that story that I took Arley out to enjoy our own stolen moment (as shown above at the Daffodil field), but I know it was rather quickly. I wish I still had the blog entry I wrote to accompany our stolen moment adventure, but I deleted that blog when this one took priority, and I can't even tell you what made me think of it just now and gave me the urge to blog about it. 

You will notice though, if you zoom in on Arley's photo that the tumor can be seen clear as day and according to Facebook this photo was taken April 19th and Arley was diagnosed six days later....

I do remember thinking though how heartbreaking it was to hear that a child lost their life over something that is almost completely unknown. How ironic it would be to learn almost a week later that Arley would be effected by a very rare cancer that the cause too is also unknown. 

The whole thing has recently got me thinking of what all I can do to help other families going through what we are. I have an idea that's been rolling around in my head, but I am not exactly sure how to go about executing it as my resources are very limited, but I hope to one day be able to do something similar along the lines of Savannah's dad and be able to pay things forward to other families who are struggling. 

With all this being said, I hope that tonight you will hold your child(ren) a little tighter, kiss them a little longer, and allow them to share in a 'Stolen Moment' whatever that may be.....

Travel Bugs and Hartford Hawks

I realize it has been quite some time since I have updated anything. A huge part of that reason was because Arley and I were away traveling. Our last two stops on our journey brought us to Texas for a while and then we finished off with an impromptu trip to Disney World.

Arley has been begging to go back since Christmas. Almost every day she watches YouTube videos of her favorite rides and the parades. I figured since it was her only real request on our journey of something to do (aside from the Zoo) that it would be a wonderful surprise. 

We were able to do a lot of new experiences as well. Whether it be dining at restaurants we haven't tried (Chef Mickey's & Akershus Royal Banquet Hall), seeing characters we haven't met before (Peter Pan) or visiting places we had not yet explored (The Boardwalk) made it all the more worthwhile.

Another fun experience we did was we were able to ride the new Seven Dwarfs Mine Train over in Fantasyland twice in a row! Arley refers to it as the "crazy train" because it rocks back and forth and goes really really fast! She even requested to ride the Tea Cups which I allowed, but didn't let her spin any faster than the ride did on its own because we had just finished dinner and I didn't want to risk something coming back up again lol. 

My favorite character experience we did was meeting Peter Pan for the first time. In all of my years of going to Disney I have never been so lucky to meet him, but Arley did and honestly it's right up there tied with her experience with Prince Charming from our last trip.

The two of them held each other like this for literally 10 minutes. I wasn't sure who was going to let go of whom first. It was the sweetest, most precious moment I have ever witnessed in my entire life. This right here to me is the epitome of the magic that Disney offers to it's guests. You seriously can't experience something like this anywhere else and is one of the reasons why I constantly continue to go back.

Arley also got to show off her fabulous dancing skills with Goofy AND Donald! They twirled and danced together for several minutes and we loved every single minute of it.

Our favorite Princess meet & greet was Rapunzel and Cinderella. Normally they will not allow characters to photograph together (unless they are a pair) because they have to keep the line moving. However Arley received some extra special Pixie Dust and was allowed to photograph with both Rapunzel and Cinderella at the same time.

Arley's personal favorite meet & greet is when she met Chip & Dale. They are so much fun, played with her Minnie 'Rella doll and made her feel truly wonderful. I myself have always loved my interactions with Chip & Dale. The way they interact is always hilarious.

                                       

Our last new experience we shared with each other was taking a stroll along The Boardwalk. She loved looking at the beautiful hotels, the sand and the water. Pretending to play some of the carnival themed games and watching the fireworks from Epcot.

Once back at home we had very little time to unwind because the following day we had a doubleheader with the Hartford Hawks Softball team. Arley got to throw out the first pitch and she threw it straight down the middle! I have video of it that I have been contemplating putting up on our YouTube channel, but have yet to upload anything. You can see her practicing her throwing in the photo below.

A couple of hours after the game we got all dolled up to attend their annual banquet. During a slideshow, they featured Arley several times, whether it being her fellow teammates talking about what it has been like having her apart of the team, or showing photos from her experience thus far, I couldn't help but tear up at what a huge impact Arley has clearly had on the team and them possibly not knowing how much of an impact they have in turn made on her. Arley refers to the them as "her girls" and "her team." This has truly been an unforgettable experience and hope that we can continue to spend time with them in years to come.

Well, that's about it for the updates for now. There will be more updates coming as the week progresses and we head towards Arley's one year anniversary. So stay tuned!

11 Months and a much needed vacation

It has been 11 months since Arley was diagnosed and things are slowly starting to return back to normal.

I decided completely spur of the moment, that I wanted to get a head start on that bucket list I mentioned to you all a few entries back and pack up my little car and take a much needed and long desired road trip.

Those who know me well, know that I have a huge love of traveling and driving long distances and being on the open road does wonders for the mind. Considering that you have miles upon miles to think, blast the music and sing to all your favorite songs that you so conveniently created on eleven mixed CDs... (yes true story there are 11 all of which are a mixture of genres) is just something that I can't even explain, you just have to experience it.

I wanted to visit some states that we have never been to before and explore around a bit and we were quite successful. A couple of our favorites were stopping at Antique Archaeology in Nashville, Tennessee which is the newest store location of the hit History television show American Pickers. 

It kind of looks like a very eclectic yet vintage boutique, but it's so very cool and fascinating nonetheless. I bought Arley a Kid Pickers t-shirt and several bumper stickers to send to my parents and brother.

From there we drove down to New Orleans for a quick visit to the Audubon Zoo which was a lot of fun. Arley has a huge love for animals so it was fun to take her there. Originally we had planned on spending two nights in NOLA and experiencing their Spring Fest down at the French Quarter near Jackson Square, but I felt the desire to continue on with our road trip and head further west.

And here we are now, currently exploring more of the beauty that surrounds us on this side of the Mississippi, having the time of our lives taking in the rich culture and all that the Central Time Zone has to offer. I don't know how far we will go or when we will head back, but what I do know is that this mother/daughter bonding adventure is something that I will always cherish especially being away from the hospital setting for a while and trust me, there is nothing else more amazing than that.