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

2 years...

Hi friends!

I know it has been quite a while since I have posted on the blog, but Arley has been keeping me super busy lately with all of her fun excitement that I haven't really had a chance to update in a couple months. 

Several weeks ago Arley got really sick. We are not sure exactly what she had, but it was pretty bad. Enough to warrant a trip to the emergency room. About a month ago she had a persistent cough with no other symptoms that had developed. It lasted about a week before it subsided and went away. Then she was completely healthy for one full week following that. The week after the healthy one was when everything became chaotic. 

She was constantly alternating between coughing up her lungs or vomiting and I tried to do my best with what I have been taught over the years, but one morning she woke up and the heat was literally radiating off her body and I knew right then she had to be taken immediately to the emergency room.

I can honestly count on one hand the amount of times she has had a fever in her short lifetime and nothing has ever compared to this so I was truly starting to worry. 

Her diagnosis from the ER was an Acute Upper Respiratory Infection, unspecified reasoning for fever and an unspecified virus which was causing all the vomiting. She tested negative for both strep and the flu. (She had the flu shot back in September anyways) Her white blood cells were dipping pretty low, but not low enough for her to be admitted thankfully.

The cherry on top of this fabulous bout of sickness was developing an actual cold with sneezing, runny nose, and that still ever persistent cough and a double Bilateral ear infection in both ears. It's really mind boggling that aside from the URI there was no other explanation as to what exactly was going on with her.

It truly bothers me that they weren't able to pinpoint exactly what she had running through her body, but I am thankful that after three weeks of hell she is finally back to her normal self and feeling a lot better. 

Today was her first day back at school (she was absent for most of this month) and was super excited to see all of her friends and her teachers. I too had missed several days of work and school. 

On a different, but more positive note I am fast approaching finals week. Currently acing all of my classes, but I hope that I still finish strong with a high GPA. It's been a stressful month with her being sick and the anniversary of her Rhabdo diagnosis that my brain lately has been in a million different places. 

I did however land my Internship for next year so that's pretty exciting and I absolutely love my job and wish I had discovered it sooner. Arley is still enjoying her dance class and her first recital will be here in a little over a month which is bringing back memories of my first dance recital at her age. 

Arley's next round of scans are scheduled for the middle of May so we are preparing for that as well as a trip back up to Boston for a visit to Mass General and Christopher's Haven in July. For now, that's about it with the updates, but more will be coming soon. Until next time...