Ten months and a Pet Scan....

It's crazy to think that we are almost at the year mark since Arley's diagnosis. Every month that passes it amazes me the amount of strength and resilience that she possesses. She has come so far into this journey and I'm hoping that we are soon finding a light at the end of this tunnel.

Tomorrow she goes in for a PET scan. I have kept this quiet until now because the next two months are going to be very crucial for us. In case you are unfamiliar with what a pet scan is, it basically means that its an imaging system that uses a radioactive substance called a "tracer" to look for disease in the body. It will also show how her organs and the tissue in her body are doing as well.

Coming to the decision to have a PET scan wasn't made very lightly. I hate the fact that I have to expose her to more radiation treatment absolutely HATE it. I wish it wasn't necessary to do believe me. Her little body doesn't need any extra crap flowing through it let me tell ya, but unfortunately this course of action is needed to determine whether all the toxins she has been exposed to have been working in her favor and killing off all the cancer cells and not forming any new ones. 

Remember, we still don't know what the growth forming in her face is and the MRI will not pick up on it either. The only positive to this is that thankfully nothing has shown up on the exterior of her face to cause an immediate worry like it did back in April with the mass bulging out of her neck.

I still try to remain very hopeful that something is working in her favor, but until I hear of the results I take everything with a grain of salt because there's the 50/50 that all could come back clear or come back that she has developed a new cancer. While obviously I want it to be clear, I also don't want to be crushed with bad news either.

Arley is also scheduled to have another MRI next month plus she is scheduled for surgery. Both of which should still happen regardless of the outcome from the PET scan. So as you can see March is going to be a very make or break month for the both of us. I'm hoping upon hope that with Spring slowly approaching that it will mean great things for us. After Winter and things dying off a newness approaches and blossoms before our eyes into a magnificent beauty and that's my wish for the upcoming month. That all the toxins will release themselves from Arley's body and that we can move on and try to have a more normal life...

One more carefree and without so much worry. One where she can go out and play and I don't have to be so overly concerned with what she may catch from people she interacts with. Where hopefully she can start preschool and be the typical 3.5 year old that she is. A normal life where perhaps I can finally breathe and stop holding my breath with every passing day and maybe perhaps release all this heavy weight that has been holding me down both literally and figuratively. Be able to feel less stress than I do these days. It's getting better for sure slowly, but it's all still there at the end of the day.

I have also been thinking long and hard about taking a little road trip with Arley, not sure if I mentioned it previously when thinking up a little bucket list full of adventure, but I really think that it would be beneficial for us to do because the winter has been so depressing with all the mountains of snow we have accumulated over the past month and a half. Be able to actually go out and smell the roses too!

Anyway, that's about it for right now. I will have lots of updates coming over the next several weeks so you will be reading a lot more about what's happening in our lives which I guess is pretty exciting since the winter has proved to have nothing spectacular to share.

Until next time friends.......

No I don't wanna build a snowman....

I realize it has been quite some time since I have updated anything having to do with Arley. There really hasn't been anything new to report as far as her treatment goes, we have just been buried under massive amounts of snow for the last several weeks.

Cabin fever has certainly been effecting us as I don't drive when it's snowy or icy out (why would we anyway?) and we have pretty much exhausted everything there is to do around here as well.

I'm anticipating Spring and will welcome it happily with open arms. I long to bring Arley to our favorite Daffodil garden and take our annual photos in the same spot. It's fun to watch how she has grown over the last couple of years that we have done it. (This will be our third) I am also hoping to jump start our play date group again and get her socializing with kids her own age because lord knows we need it. I miss spending the time with the other moms I have become friends with over the last two years and I know Arley misses her friends a lot too. It's been so hard especially in the winter months when her immune system is at it's lowest due to treatments to be able to attend anything.

I also really want to take her swimming and to the zoo. Try to have some normalcy as the warmer months approach. If you don't remember too much of our story as we approach 10 months in allow me to remind you... for the last two consecutive summers Arley has been really sick (supposedly with unrelated illnesses, but that's a debate for another time) and we have been home bound pretty much the entire summer with the occasional outing here and there, but very few and far between and I really want to make this summer a good one for her and let her do typical things a 3 year old should.

I've started to compile a bucket list of events in my head and may even post it here for all of you to follow along with us so that as we do them we can get satisfaction knowing that we crossed something fun off of our list and you can be there to experience it with us from the comfort of your own home. You all have been with us on this ride for such a long time that it only seems right to share this with you too.

Next up in Arley's treatment will be scheduling her for Physical Therapy, visiting the ENT doctor, scheduling her PET scan and finding out what this cancer business has in store for her and hopefully determining whether the growth in her face is something to worry about or breathe a sigh of relief over. I always try to remain optimistic as these scans and tests approach, but also keep the realistic expectation that it could come out with some not so happy news. I never want to get my hopes up only to be devastated later ya know? So with that, Arley and I will continue to keep on trucking on this journey and focus on all of the fun we plan to have once the weather warms up. Until then....

Nine Months

Whew...

Here we are nine months into our journey with Rhabdomyosarcoma. This past month has definitely been the most challenging for us as of recent, but has also brought a ton of new memories into our lives as well.

Arley has been up and down ever since becoming immune to one of her meds and allergic to the other. It worries me as to how it may effect the rest of her treatment as we are coming up on our next inpatient visit the beginning of February. 

She has also become more emotional in the past month. She cries over the smallest thing and gets herself worked up. It's hard to differentiate between what is a normal reaction to being a typical three year old and what is the cause of the medicines and chemotherapy. Her doctor said that it probably plays more on the chemo side of things than her age as he recently had another patient go through the same thing who is older.

It's difficult because we can be playing together innocently and then she will accidentally drop something and it roll underneath the bed and will immediately burst into tears about it. To me it's not that serious, but to her it seems like the end of the world. It has been frustrating because I don't take her out too much anymore and when I do its like meltdown city if something just doesn't go right and it's not easy to console her when you are driving in the middle of rush hour.

Aside from that she remains in great spirits overall and I hope to keep it that way. If we can just get rid of this runny nose she has been dealing with since our last inpatient visit we would be all set.

If you haven't been following along with us on Facebook then you may have missed some of the most recent joys we had this month which included having her wish granted by the Make-A-Wish Foundation and visiting New York City. Then being adopted by the Hartford Hawks Softball team and most recently being on the news for the Miles for Smiles program with Make-a-Wish and NBC30 CT news.


The next best thing we are looking forward to is that changes are coming, and there are bigger and better things waiting for Arley & I just over the horizon and in due time will be shared with a need to know basis. Until that time comes though however Arley and I will continue on this cancer journey and aim to be on the road to remission. I feel as though it is coming, but will never get my hopes up because I have learned from this experience that when one bright light shines, something is always lurking behind to blow it out. 

I am however very thankful for the new people in our lives as well as some old ones who have recently come in contact again. It's always good to know that no matter where life leads you that you can always find your way back to each other and pick up where you left off as if no time has passed between you. 

With that I am off, have lots to do today in preparation of our visit to the clinic tomorrow. Newer updates will be added soon. Until then....

Hartford Hawks

Today Arley signed with the Hartford Hawks and is an official member of the softball team! She has her own locker and jersey too!

I am so beyond thrilled that Arley will have a good group of women to look up to as role models. Even though today was the first time meeting the team, they were so welcoming, got down on her level and interacted with her and had a dance party.

We are really looking forward to supporting these ladies at as many practices and games that Arley can handle and showing off our Hawk pride. This will be a wonderful experience for all involved and can't wait to share the season with all of you.

If you live in the area and would like to come out to a game feel free to check out their Schedule. If you would like to support the team, but can not attend please consider making a Donation instead. 

Make a Wish

Recently Arley was approved to have a wish granted by the Make A Wish Foundation. I discussed with her what she would like to have as her wish and we narrowed down our choices because we were told to pick three ideas, not because they couldn't be accomplished, but in case due to weather (trip) or sickness (Arley) we could either postpone or move on to the next.

A room makeover wasn't even on our radar until I had a random conversation with my aunt and I was telling her all about our ideas and what we wanted to do versus not and she actually suggested about a room makeover. The more I thought about it the more I truly loved the idea because an experience (as most children often pick, which is totally fine!) lasts just that one day and a room makeover would last her forever. (At least until she got older and changed her mind)

The room makeover proved to be the top choice because regardless of the weather or how she was feeling it was something that could be done and had been done before. Believe me I checked. So I called up our local MAW office and let them know of our decision.

I had already been scouring Pinterest for ideas on room makeovers for giggles because let's face it making over a room can be quite pricey and now I got to choose a theme with Arley (horses) and make it come to life. Finding horse related stuff for her room proved to be quite a task. You would think that since it's very feminine that there would be an overabundance of choices, but you would be wrong. 

I did come across a beautiful horse themed set from Pottery Barn Kids and hoped that it was something they would allow us to use, but the price tag almost gave me a heart attack, but I attached the info to her vision board and continued the search on what I thought she would like in her room.

Then it was then discussed what we would like to do for the day because we couldn't be home while the work on her room was being done so I offered the idea of going to NYC. We've never been and I would love to take her to the city and possibly visit the American Girl store, Toys R Us to ride the ferris wheel and sight see.

They had to clear the idea of going to NYC with MAW headquarters because a room make over and a trip to the city could be viewed as two wishes, but I also mentioned that the American Girl store sells tons of horses and since its hard to find horse related items for Arley's room that this could possibly help in allowing us to go.

Let me just tell you, that the Connecticut chapter of Make a Wish came through for Arley like you wouldn't believe. We received a donated limo ride to and from NYC and anywhere we wanted to go while there. Donated gift cards to the American Girl store as well as a paid for lunch in their Bistro cafe. In addition, tickets to Top of the View in Rockefeller Center. 

Arley had so much fun and I am so thankful that she was feeling well enough to experience the whole thing. Our time in NYC was very limited and I hope to bring her back once the weather is warmer, but I would not trade this mother/daughter memory with her for anything else in the world.

Meanwhile, back at home the MAW team was hard at work making Arley's Pinterest vision come to life. I am incredibly pleased with the way it turned out and could not believe how beautifully it was all put together. The attention to the smallest detail is absolutely marvelous. I share with you, but one photo because as they saying goes, "A picture is worth 1000 words."

Thank you so very much to the CT chapter of Make a Wish for all that you do in making the lives of sick children just a tad bit brighter by granting them wishes to cherish for always. 

To those who donated gift cards, donated the Top of the View experience, or their time to put everything together I thank you so very much from the bottom of my heart. Your generosity to make a little girl smile is one of the greatest things you can give in this world. Thank you, thank you, thank you.

So long 2014!

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...

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