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.