4th Annual Buchholz Bowl

One of our most anticipated events of the summer took place last week up in Boston when we took the drive out to attend the 4th Annual Buchholz Bowl. 

It started off with a quick trip to the Outlets where a visit to the Disney Store was an absolute must and then we headed on over to our most favorite, eclectic and trendy hotel nearby the festivities and grabbed a quick bite of lunch.

After lunch we hung around the hotel for a bit and then made our way on over to Fenway.

On our walk we noticed our friend Clay so of course had to stop for a photo op!




This year's Buchholz Bowl was by far the best yet. Her teammate and Captain was actor John Hurley who played the role of J. Peterman on Seinfeld and most recently known as the runner up to the first ever season of Dancing With The Stars. He twirled Arley around the bowling alley and even showed her some official DWTS moves. She was delighted.

We also met Mookie Betts, David Price, Brock Holt, Hanley Ramirez, Koji Uehara, Tommy Layne, Blake Swihart and many others. 


I gave Clay a pep talk and let him know not to listen to the haters, that everyone can't be perfect all the time, just keep his head in the game and everything will eventually work itself out. We believe in him and are thankful for his friendship. 

I also got to congratulate Jackie Bradley Jr (Arley's first year teammate) on the birth of his daughter and sent well wishes to his wife. We were also able to get a better picture of her with Dustin Pedoria and I promised him that she wouldn't hug his leg again which he laughed off and said it was alright. 

Just as we were getting ready to leave and head back to our hotel, Big Papi himself entered the bowling alley. Like bees, to honey everyone immediately swarmed around him. I hoped to say hello to him and wish him luck on his retirement, but the likelihood of that happening was next to never so I gathered Arley and headed towards the exit.

One of the volunteers caught up to us and asked if we had a chance to meet with Ortiz and I said we didn't, but that was okay. He wouldn't hear of it and took Arley's hand and led her back through the crowd up to where Ortiz was standing. And like the parting of the seas, as soon as Ortiz caught sight of Arley the only person around him that mattered was her and he talked to her for a bit before snapping a quick selfie. Many things can be said about David Ortiz, but the number one thing that can be said is he has the biggest heart especially when it comes to children.

I also want to send an extra special thank you to Clay & Lindsay Buchholz for inviting Arley and I out to the event. We are so lucky to have the two of you in our lives and are so grateful for all that you do for children suffering life threatening illnesses and for all that you will continue to do. We love you!

Physical Therapy

The other day at about 4:30 in the morning, Arley woke up from a sound sleep screaming in pain that her leg hurt. She described the pain as being the color "red," but wasn't able to describe it in any more detail. 

I called the pediatrician's after hours service and the advice nurse said to basically watch out for fever or an increased level of pain and to call back if either got worse. Arley had fallen back asleep by the time the nurse called back over an hour later so we decided to wait until the office opened to decide what to do next.

Eventually we went about our day and Arley didn't really mention her leg bothering her again. 

At our last Oncology appointment her doctor and I discussed how Arley still has the foot drop, still trips and falls a lot, balance is still off-kilter and the worry that we will need to get her fitted for braces again. 

He called for 12 weeks worth of Physical Therapy to see if that will help the tightness she experiences in her legs due to the side effects of the Chemotherapy and if it does that would be fabulous and if it doesn't she will have to be fitted for leg braces again.

It's a struggle as a parent to see your kid struggling too. She can't really walk for extended periods of time without her legs tiring out, struggles a bit with stairs (especially those at the playground) and then there's the fact that she trips and falls A LOT. 

So yesterday she had her first PT appointment and she did great! She walked the treadmill, did some stretching and balancing on the balance ball, did some jumping, used a tricycle, walked the balance beam and rode another contraption that mimics riding a bike. 

She seemed to enjoy the different activities. Some were easier to accomplish than others, but I'm sure by the time the 12 weeks is up she will have mastered all of them swiftly and easily.



Next up we will be heading off to Boston for a little bit, receiving second opinions and discussing different options of moving forward in other areas. Until next time...  

Preschool Accomplishments

Last week Arley crossed another accomplishment off her list, she graduated from Preschool. Hip Hip Hooray!!!

She truly has blossomed into a new kid since first starting with the Nursery school. She was very timid, shy, quiet, kept to herself mostly and observed everyone, didn't want to participate in too much group activity, and liked hanging out by herself, but as the year went on, she was like a little butterfly that finally blossomed out of her cocoon and her teachers said she was a pleasure to have in class, so full of life and zest that has most certainly made this mama very proud. 

At the beginning of the year her teachers weren't sure if she would be socially ready for Kindergarten because she kept to herself a lot. She was also slightly behind in some fine motor skills initially because going through treatment was a greater priority. We didn't get to practice running, skipping, balancing, or catching/throwing a ball as much because her energy level was significantly lower due to all of the chemo and radiation. Still though, with some time and patience everything changed shortly after the holidays. She loved to participate in different activities, made some friends (mostly with the boys), and enjoyed learning.

What I loved most about Arley's preschool was that it was small, intimate, and very family oriented. The school itself is a non-profit and relies heavily on donations from the parents and community. They have a lot of fundraisers throughout the year that you actually want to participate in (tag sale, casino bus trip, stuffed breads) and the tuition is very affordable especially on a single mama's budget. 

The two teachers are also amazing. They have an open door policy to where if there's ever a concern, or you just want to talk about the progress of your child they make themselves available to talk to you and listen and never rush you out the door. The curriculum is everything your child needs to be ready to enter Kindergarten and they do a lot of fun field trips and activities throughout the year too.

I am very pleased with the education Arley received and we plan to still stay involved with the school as much as possible because we loved being apart of it so much.

Somewhere Beyond The Sea

After the little stage fright episode at the Christopher's Haven Fashion Show, I was worried how Arley was going to do when it came to getting up on the actual stage of her dance recital. We had been practicing really hard, she knew the steps forward and backward could probably even do them in her sleep, and knew the lyrics to the song verbatim so I knew she was more than prepared to give her grand performance. 

I asked her if she thought she would be able to get up on the stage and do the dance routine with her friends, and I was met with a resounding "Yes!," but still I was a bit apprehensive as to how the whole dance recital thing was going to play out.

True to her word though, Arley was flawless. During the dress rehearsal they performed the routine twice and each time I bawled my eyes out. To see such grace and confidence in the fluidity of her motions was the most beautiful thing to witness. She never missed a single beat and some of her fellow dancers even looked to her as to what step was to come next. 

To say my heart was beaming with pride is probably the most accurate statement I could make regarding how completely blown away I was by the whole experience and it confirmed my thoughts that this was the best sport for Arley to participate in as she is constantly singing and dancing around the house on the daily.

I am so thankful that we found the dance studio we did on the recommendation of a friend whose daughter is also a dancer there. We enjoyed our time there so much that I signed Arley up for a 5 week summer session and already enrolled her in fall classes. Can't wait to see what the 2017 season has in store!


First Recital 2016

Genre: Tap
Song: Somewhere Beyond The Sea (Finding Nemo)

Also a special thank you goes out to all of Arley's entourage that showed up and supported her including members of the Hartford Hawks and Bristol Blues!

Night for Charity

Last night Arley and I attended the Christopher's Haven Fashion Show event at the Fairmont Copley Plaza Hotel in Boston. It was a lot of fun and I am so thrilled that we got to be apart of it and Arley was chosen as a runway model.

We got to meet Marcus Cannon who plays tackle for the New England Patriots and Dustin Pedroia who is second baseman for the Boston Red Sox. Arley actually clung to Dustin's leg for a photo op (she was tired, I was horrified), but he said it was cool and laughed it off. I'm sure he's used to it considering he has three young sons, but still...if you read this Dustin, I'm sorry! Whoops!

Arley also started to have a slight nervous meltdown shortly before going on stage to walk the runway. Originally she was scheduled to walk with another girl, Peyton, but she was afraid she wouldn't be able to see me in the crowd. I told her I would walk the runway with her, but on the floor next to the stage if that helped (it wouldn't), so instead to calm her tears I decided to actually get up and walk the runway with her before showtime. 

Thank goodness mama decided to wear a fancy dress to the event otherwise that would have been awkward!! Although in my defense, my other outfit was a nice blouse and slacks, it still wasn't as fancy as my dress. Despite Arley being nervous we owned that runway for our walk, did a little twirl before marching back up the runway and exiting stage left.

All in all it was a fantastic event and I hope that the donations and silent auction items brought in thousands of dollars to help support Christopher's Haven and families like ours have "A home for kids when cancer hits home." 

If you yourself would like to help support Christopher's Haven, please click Here and it will bring you to their donation page. Thanks so much! Until next time...

Caught in Limbo

It has been a rough couple of days here...

Arley had her checkup with her Oncologist a few days ago. We discussed some concerns and also discussed who would become her new doctor once her current one moved away. Thankfully, we were in agreement as to whom should be taking over her care from here on out so I can breathe a little easier knowing that it's a doctor we like, though we have only ever had one previous interaction.

Then Arley was prepped for her scans, had them, and we went home. An hour after we got home we received a call from her doctor stating that something had shown up on the scans in a new area of the body and that we would need to schedule further testing immediately.

We were warned about this. 

Though it doesn't help my anxiety knowing that this was a possibility and that we now have to wait in limbo before she can have more tests and see where it is we will go from here.

I'm hoping that it's nothing, but preparing for the fact that once you have cancer, the likelihood of more coming is evident and sometimes rampant. Ever since that phone call I feel as though an elephant has been sitting on my chest. It feels extremely hard to breathe especially with the uncertainty of what is to come.

News like this always takes precedence over others. I have been so caught up in what could be, that I haven't even had time to share in any good news that has also happened both with myself and with Arley.

Seems to always be the case that when good news comes, the possibility of bad news being so close on the horizon starts to have a lingering effect. 

Though I don't dare to even whisper the good news just yet as I fear that when I put it out into the universe that something else will come along and swoop it off into Never Never Land. 

For now, everything is on hold until we have more testing and see where things are going to take us next. Until next time...

Shocking News

This is one of those posts where 'I definitely didn't see that coming...'

In today's mail I received a notice from CCMC and didn't really think anything of it because they usually send me mail just before Arley is scheduled to have her scans so I put it off to the side while I got myself settled in from working all day.

I opened the rest of my mail before landing back at that one. When I opened it, I was shocked to see that Arley's Oncologist is leaving at the beginning of June for another state. While I am always happy to see people moving on to bigger and brighter things, I am sad that he is leaving and unsure of who Arley's new Oncologist will be.

The letter didn't state any one doctor specifically, in fact it listed all of them, but the problem is, none of them know Arley, or myself for that matter. They don't know her history, how we do things, the type of relationship I have with her current Oncologist or anything else that we have done for the past two years.

I can say with certainty there is one specific doctor that I do not jive well with and that person will not be someone I will want in charge of Arley's care moving forward, but I still can't decide who I want to be making all these important decisions in Arley's journey from here on out.

It's extremely hard to put your trust into people when it comes to your child(ren) especially in cases such as these where the decisions are of the utmost importance and could have severe consequences if the wrong one is made. 

On the other hand, it's selfish to think that our doctors will be around forever, even if that is the hope of course. It's just not going to be easy to make a decision. 

I do plan on speaking with her Oncologist when we see him next and formulating a plan of action as well as consulting with two of the nurses that we trust should they be on duty that day as well. I want to make sure we have one specific doctor being the primary from here on out rather than floating her between doctors. 

I know in the long run Arley gaining the trust of one specific doctor will make things run more smoothly for our visits especially now that she is more vocal and has her own opinions if she doesn't like something or someone she doesn't respond very well. Can't blame her for that either, she gets the quality from me.

Sigh...

It's always something going on I tell you. If it's not that then it's the fact that Arley keeps getting herself sick all the darn time. We just had a 3 week long episode back in April and here we are again battling another sickness. I swear I may need to stick her in a bubble soon and call it a day lol. 

Until next time folks, that's all I have for now