Tis The Season... For Giving Part Two

This past Monday, Arley and I met up with her Bristol Blues teammate Christian outside of Connecticut Children's Medical Center so that the two of them together could deliver the last remaining batch of toys we collected and donate them to the Oncology Clinic and Radiology Department. 

It was great watching the two of them pull a huge wagon full of toys around the hospital and help to stock the toy closets in preparation for Christmas delivery. It's humbling knowing that we get to be a very small part in making other children happy this holiday season who will not be home to spend the festivities with their families.

I remember full well that this was us last year, stuck in the hospital for Christmas and how heartbreaking it was knowing that Arley's biggest concern was "How will Santa find me here in the hospital? How will he know where I am?" At an unusual loss for words I just explained that "He knows exactly where you are and he won't forget about you."

It didn't make it any easier, it was hard on us both, especially missing out on my brothers annual Christmas Eve party, but waking up to some Christmas presents left out for Arley made it a tad bit easier knowing that regardless of where we ended up, Santa would always find us.

In the grand scheme of things, I know this still isn't enough in comparison for all that both Connecticut Children's and Massachusetts General have done for us, but every little bit helps and makes a huge impact on other children in Arley's situation and for that I am thankful to be apart of. 

We also plan to continue this tradition again next year. This time starting earlier in the summer with hopes of partnering up with the Bristol Blues to host a toy night for donations with perhaps some type of perk included (to be determined at a later date), partner up with some local small businesses as well as a local police station so that we can expand more and bring joy to even more children and families. 

With all that being said we want to thank all of our donors for providing extra funding to purchase toys and again a huge thank you to our anonymous toy donor for helping us provide for the families over at Christopher's Haven. 

Until then, we will see you all next year..... you know, only a week away now...

Tis the Season... For Giving Part One

Ever since Arley was 3 months old I have taught her the art of giving and that during the holidays it is far better to give rather than to receive. So, ever since her very first Christmas, we have purchased toys and have donated them to various organizations. 

As each year came, I challenged ourselves to add one more organization to our list than the year before so that we were touching more lives and making a bigger difference. Whether to Toys for Tots, Police Stations, our local News Stations, Children's hospitals etc we have always done it without fail.

This year though has been different. As a single mom I had to become creative, savvy, and think outside the box. I turned outgrown clothes and toys into cash and hoarded the money for months only spending it if I came across a really great deal on clearance (Target during the summer I'm looking at you!)

I also created a GoFundMe when I teamed up with the Bristol Blues to raise additional funds and tried to find a local police station to hook up with too. I was met with a lot of rejection from the police stations because they were already well invested in holding toy drives (rightfully so!) and couldn't coordinate anything additional. 

However, the gift giving Gods must have been watching me because they sent an angel in the form of a Police Officer. I won't mention the name because I know that this police officer is very humble and doesn't want to take any credit. (even though the local newspaper ran a story on this person!) The police officer didn't make any promises, but assured that whatever was in their power to do to help Arley with her toy drive that they would do it. 

And let me just say that this police officer came through in the biggest way possible! Arley and I were invited down to the police station and welcomed to any of the toys they had available so that we could donate them. We chose specifically to donate a good majority of the toys we selected there to go to families staying at Christopher's Haven for Christmas, as well as the Oncology clinic at Mass General and to the toy closet at the place she received her radiation treatment. 

The rest of the donations we purchased on Black Friday with our own money plus the additional $125 raised on the GoFundMe will be dispersed through a bunch of local community organizations that we hand selected whom we thought would benefit the most.


While Arley and I may not have much ourselves at times, we have always felt the need to give back to others and spread the love and good karma to all with the understanding that whatever good we put out into the world, the good will eventually make it's way back to us.

To be continued.....

Preschool

It has been almost a month since I last updated and several weeks since Arley started preschool. Life has been hectic lately and I don't see it slowing down anytime soon.

I am happy to report though that the transition to preschool was completely flawless and went without a single tear shed on her part. I think it helped tremendously that I talked preschool up as much as I could all summer, and knowing that her cousin would be in the same class helped to ease any fears.

Perhaps though admittedly they were my own fears and she would've been just fine the whole time, but that's not a gamble I was willing to take. The thought of her going to preschool was met with a lot of overwhelming emotions especially because she has never been in the care of anyone else aside from family for a long period of time. While independent, she is very cautious and doesn't like me out of her sight. 

Regardless, I have never been more proud of the accomplishments she has made over the last few weeks. There is never an issue with waking up early in the morning to make sure we get to school on time, she excitedly tells me about what she learned when I pick her up and she always looks forward to going back the next day.

I've said it before, but I am truly blessed with her. She's such a great kid and she has conquered every new milestone effortlessly. She surprises me everyday. She has truly crossed over into big kid status.

She turned 4 recently and we said goodbye to the toddler stage and tucked those memories into our hearts where they will remain until she's older. 

I am however trying to be proactive about next school year and called the Board of Ed to find out where she will be district for Kindergarten since there are several schools nearby. Once I found out, I took a quick drive over to that Elementary school and had a very lovely conversation with the schools Secretary. 

I found out that the school she will be attending is one of the best in the area and read up on the website about the Principal and the excellence that she strives for within the school. I feel very confident in Arley attending there and love the close proximity we have so that I will be able to drop her off and pick her up with ease.

I also told the Secretary that I have plans to join the PTA committee and have hopes to be a chaperone as well when needed. While it's still a full year away it's good to get the ball rolling on these things so as not to wait until the last minute and left scrambling. It also takes away the anxiety of the unknown too so I'm happy I have that under control.

For now, that's about all the news. We have an appointment coming up in November for a follow-up, have more scans that need to be scheduled for December and a few other appointments I need to schedule for next month when I get a break in my schedule to do it. Other than getting over a bad cold this week, Arley is her happy 4 year old self.

These are a couple of photos I took of a back to school session back in August that I never got around to posting.

She picked out her backpack and lunch box all by herself. I had originally thought she would want Frozen or My Little Pony, but nope, she wanted Teenage Mutant Ninja Turtles. Couldn't be more proud!

September is......

September is Childhood Cancer Awareness Month and if you "follow" this blog then that means you know someone who has cancer. This month is very important to us and we need help to spread awareness so that research can be done to help these kids fight this tough battle and live long, fulfilling, healthy lives.

I also invite you all to join Arley and I by showing your support with wearing either Yellow (for childhood cancer) or Gold (for Rhabdomyosaroma) throughout the month and to post photos using the hashtag Team Arley Sage.

If you wish to do something more or in addition to wearing our support colors, I would like to offer the following sites to consider donating to. A lot of these places have contributed in some way or another to Arley's journey and by donating to them you are donating to her and other children like her. Thank you!

Connecticut Children's

Massachusetts General

Make A Wish CT

Christopher's Haven

Clay Buchholz Foundation

Binkeez for Comfort

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.....