Not taken seriously

I'm trying my best to write this update and not have the anger that is swirling around inside me come spewing out all over this latest entry, but if you know me personally you know I don't make any promises that I don't intend to keep, so be forewarned, this post could have an explicit word or two or three come spewing out at any given moment and I will give zero fucks about it. See, I told you so.


As some of you may or may not be privy to, Arley's main Oncologist that we have been working with over the last 2.5 years decide to leave CT and move elsewhere to pursue other things. Which is great ya know? We should all do that at some point in our lives, and we met before he left, Arley had her scans done and he suggested a new Oncologist for us and I agreed that it was probably a decent choice and trusted wholeheartedly in his judgement.

Well, after Arley's scans were conducted he called to let me know that something appeared on her bladder in the scans and that we needed to order an ultrasound for further testing immediately. Had the ultrasound done and that was inconclusive because what the Oncologist said was not what they saw so I'm like fucking great now we need a third opinion because both of what I am told contradicts the other and I have no idea what's going on, even though something being on her bladder kind of made sense to me at the time.

Then he left the practice, and the other Oncologist took several months before we had our first proper meeting. He briefly saw Arley before being called away into surgery about a month ago when I was trying to explain to him about her constant leg pain despite going to weekly physical therapy appointments. I met first with someone who had never met Arley and I can assure barely graced her file before deciding that Arley's pain was due to "growing pains." Growing pains? Seriously? Arley has documented problems with her legs, especially the left one with foot drop, constantly loses her balance and trips and falls. You're just going to write it off as growing pains? What the fuck is the matter with you?

Whatever. I let that shit slide because I knew better. I know my kid inside and out. I have been dealing with various medical issues with her since she was a baby and like hello, I'm her mother! The physical therapist was in agreement with me as was Arley's pediatrician, ya know, people who have actually spent a decent amount of time with my kid and hey wouldn't you know, actually listen to me too!

Anyway there has been a lot of back and forth going on with trying to secure appointments necessary for my kiddo to get her second (third) opinion on what's going on. I'm being met with road block after road block because nobody wants to work with me regarding my work schedule. I don't want to take unnecessary days off from work (that I have had to anyway) when I have all day on Friday off. Schedule us to be seen from 8a-5p I don't care just make it happen. Well, doctors don't want to see too many patients on Fridays (of course) so I wasn't getting too far. So I'm bouncing around between Connecticut and Boston to figure out what the deal is.

That brings us to Arley's scans the other day. We met with the Oncologist at CCMC and he didn't think it was overly necessary to scan Arley's bladder/lower regions, but you bet your ass I wouldn't give in until he did and agreed to scan it as well as the main site of her cancer. Then after all was said and done with her scans, complete radio silence. Never heard a damn word from Children's. Okayyy. Um, hello (waves frantically) worried mother over here. Did you find something on the scans or not? Fuck it, I'm not waiting any longer and I'm on the phone scheduling her to be seen up in Boston with her assigned Oncologist up there.

The good part about scheduling an appointment up in Boston is that I know in my heart that they are going to listen to me and take me seriously. Boston is freaking God in my eyes when it comes to this kind of thing and is constantly on the cusp of cutting edge stuff so if anyone is going to find something going on with my kid it's Boston. And wouldn't you freaking know they did.

I had completely forgotten about the fact that Arley's Boston Oncologist was going to give us an update on the scans for Friday(today). I seriously had been thinking all day that it was Saturday as I have had a lot of stressful things going on as well lately that were up in the air that I was trying to resolve. So today I woke up happy as a clam with so many wonderful things coming up over the immediate horizon, only to be shocked as hell to hear what the Oncologist from Boston had to say.

Cutting to the chase, Arley has blood showing up in her urine. Which means in short that there could very well be something going on with her kidneys, which would explain quite a bit that she has been dealing with since oh I don't know the end of freaking MAY! The only good thing we know is it's not an infection and there was no bacteria present. However, this could mean a whole bunch of shitty things one of them being kidney cancer. They don't think so because in children it's rare, but they didn't think she had cancer in her neck almost 3 years ago now did they? 

So through my tears I tried reaching out to the Pediatrician's office and we were having some random connection issues to where we could hear each other perfectly fine and then all of a sudden I could hear them, but they couldn't hear me and we had several failed attempts with the phone before I said screw it, put Arley in the car and drove over there to at least give them the direct number to Boston's Oncologist.

Eventually later on this evening Arley's Pediatrician called me. Both the Boston Oncologist and her Pediatrician are perplexed as to why this is currently happening and what the cause or even the source of the cause is. This is kind of over the realm that the Oncologist has ever dealt with personally so we have calls out to the Pediatric Urologist to see what needs to be done as the next step. So far the only thing we have planned is to collect an early morning sample of urine from Arley to start the day and by dinnertime have an appointment set up with the Pediatrician while we wait to hear from the Urologist. Cue the agonizing wait of the weekend to fly right on by.

And now, we wait. So many questions, so little answers. Everything is completely up in the air right now. Things I have been working so hard towards over the summer to make our lives better are currently in jeopardy because her CCMC Oncologist thinks he knows my kid better than I do and brushed us off twice. Between you and me, he's going to get an awful earful the next time he sees us. You haven't seen mama bear mode come out, but it's going to in full force. If he would just have listened to me when I brought this to his attention the first time we either wouldn't be in this predicament, or I would at least have some kind of idea as to what to do. 

Time is running out on a lot of things and like I just mentioned, a lot of things are currently on the line and I don't know which damn way this is all going to drop. Arley and I had so much good things to look forward to and everything seems to be crumbling down around me after I have worked so hard towards these goals all summer. All because someone who thought he was the "expert" didn't take this mama seriously.

To be continued..........

Occupational Therapy

If I am being honest here, Arley has been struggling quite a bit lately. Most notably with her legs. She still can't walk for extended periods of time without getting tired and wanting to be carried plus she also still trips and falls.

She goes to weekly PT sessions, but every now and then complains about her legs. After last weeks session she was so worn out and complained about the pain that I had to give her a small dose of medicine just to relax her enough to be able to sleep. 

I am beyond frustrated at this point. I have had doctors say that it's probably growing pains, but to me growing pains shouldn't be lasting this long. I hate seeing my child go through this and be helpless to how to go about helping to make her feel better. My mom guilt has been through the roof for weeks now. 

To top all of this off she also met with the feeding team the other day and they decided that she is going to need Occupational Therapy now too. If you have known Arley since she was a baby then you would know that we have had huge battles of trying to get her the right formula and then baby food, before moving on to table food.

She was very late in the game with all of that due to her allergies, gag reflex and texture issues. I remember being told that eventually she would grow out of it, but here we are almost 5 years later and she still eats only a handful of foods. 

She's definitely not starving, but her palate is extremely limited and it gets tiresome feeding her the same things over and over again. On the other hand it is what it is, I choose my battles, and this isn't one of them.

Thankfully the feeding team seemed quite supportive in what I am doing so far. Making it a positive experience, praising her when she tries a new food even if it is few and far between. I am not the type of parent that is going to demand she eat what's in front of her knowing full well that she won't, I do cater to her likes because lets face it, if you went through what she does you would cling to what tastes good too.

I don't want Arley to develop any ill will towards the foods she eats and be subjected to an eating disorder when she's older because of it. That's the last thing either of us needs. There is also a bit of sensory going on with her too because the look of a food can set her off and if she tastes something she doesn't like she throws it up, rather than spitting it out.

With going to Occupational Therapy the idea is getting her to play with her food. Looking at it, touching it, chopping it up, or whatever else it is they decide to do. The ultimate goal is to expand on the foods she eats, but getting her to do so is not going to be an easy feat.

People have also suggested that the peer pressure so to speak of seeing other kids her age at school would probably help her in wanting to try new foods too. Yeah no. Arley is way too smart for that. If the visual component wasn't there, then I would probably agree that yes she would be more apt to trying foods, but if something doesn't look right, she's not going near it.

We haven't even begun the OT and just thinking about it I am exhausted. It's just another appointment to add to our agenda, one more battle we have to try and conquer and if I can be blunt, I'm pretty much over it. Wishing on all the stars in the sky that things can just be normal, but knowing full well that this is our normal and it has been for years.

I can't lay any blame on her though, she gets this trait from me. I was a very picky eater when I was her age, but eventually the older I got the more foods I was willing to try, but it took me well into my 20s to expand my horizons. Fuck, karma is a bitch.

We have some more appointments we need to get lined up as well as meeting with more specialists, so once that has been done I will post more updates soon.

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...