End of the year wrap up

2016 has certainly kept us busy... 

Starting off this year...

Arley was halfway through with preschool and doing remarkably well, and I myself had just enrolled back into classes to finish out my second degree. I finished out the semester earning myself a 4.0 GPA, scholarship for another semester and landed on the President's List.

The next milestone Arley had this year was obtaining her first ever Library card! While we do not utilize it due to the germs than can manifest in there, it was still a rite of passage that she was thrilled to take part in.

I myself personally left one career and started another and then switched organizations halfway through the year. It has offered a lot of growth and has been rewarding to learn another trade.

Next it was Arley's second season with the Hartford Hawks Softball team. I am so incredibly proud of these young women and cherish the friendship and bond they have with Arley. We have been frequent visitors to a lot of their games and in turn they have been frequent supporters of anything Arley has been involved in. We are so honored that we get to continue to be apart of this organization for our 3rd season and look forward to counting down the days until on the field again.

With that, Arley was also apart of the Bristol Blues again. This past season was much different than the first. Nobody can ever replace the friendships she formed with the Fab 5. Our experience this year wasn't the same and it's hard not to compare the two seasons, but the expectation was set very high and it fell flat. Although, I have been informed that this season is going to be even more different than the last so I'm hopeful that things will turn around for the better.

We also learned that Arley's Oncologist was pursuing a new venture and moved away. We miss him dearly, but hope that he is happy. Arley still hasn't had the first official meeting with her new Oncologist after the last time I mentioned it, but that is upcoming in the next couple of weeks so I'll be sure to update as it comes.

As we move further into the summer time a lot of things happened. Arley danced in her first recital, and was accepted into the performing dance troupe which would travel to different venues to perform during the winter months. We met actor Michael Cudlitz (Abraham from The Walking Dead), she turned 5 and started Kindergarten. 

Moving on to the fall/winter months Arley has been extremely sick off and on since just before my birthday in October. She was doing good enough to attend her first big girl concert of Carrie Underwood, but November proved to be a harsh month health wise for her. She was constantly sick, missing days of school, and feeling all out miserable. You name it, she had it and then some. Because of this Arley has needed to do breathing treatments to help her feel better. It's been great, and she even alerts me to when she feels the need to do a treatment on her own.

To round out the year Arley achieved another milestone. She lost her first tooth!! A brand new tooth literally popped up overnight between one of her many trips to the pediatrician and took a whopping 12 whole days to fall out (in dance class of all places)

Additionally Arley got to be an extra in a commercial for the local news. It has aired several times already and will continue to gain frequency as the event she is apart of gets closer. 

As far as all things related to Cancer. Arley began Physical Therapy. It was originally only supposed to be a 12 week session, but it turned into more with Arley eventually needing to have the leg braces put back on. The balance, coordination, and foot drop remain an issue. While both the PT and leg braces have been helpful, there are still many challenges and she experiences a lot of pain. Hopefully in the new year we will see greater improvements. Arley is set to have another set of scans soon and we will be doing a uro flow with Nephrology to figure out the blood in the urine issue she has been dealing with for quite some time. Unfortunately from my last update regarding that, nothing was to be done until January and we are almost there.


Regardless of everything, 2016 was a decent year. We gained new friendships, lost some friendships as well as a few loved ones, made big life decisions and continue to conquer everything that has come our way. We have no idea what 2017 will have in store for us. One can only hope, but I'm sure it's going to be a great year regardless because 7 just so happens to be my favorite/lucky number and I expect nothing but good things and will try to keep that attitude moving forward.

I still haven't made the decision on whether or not I will continue to post updates to this blog yet. I have created a new blog that will be much harder to find and will be using it moving forward more frequently in the new year. I will probably broadcast it on my main Facebook page so those family and friends can follow along, but haven't decided yet what I will do regarding those following along on our journey on the Team Arley page. I guess you'll just have to wait and see. Until next time, wishing you health & happiness in the new year.

Kindergarten

It amazes me everyday to know that Arley is in Kindergarten. I seriously blinked and she turned into a big kid overnight. She walks into the elementary school like she owns the place, with such an air of confidence that surpasses anything that I could have ever imagined. 

I thought it may take a little bit of time for her to adjust to a brand new school, new classmates, teacher, and longer days, but it's as if she has been doing it all along. She enjoys going to school and misses it when we are home on the weekends. 

Two months ago I had the privilege of attending her first parent/teacher conference and received nothing but praise. She loves learning, she loves when it's her turn to be the classroom helper and is right on target for where she needs to be academically. Not only that, but she enjoys doing her homework too. 

One thing that has made me extremely proud is that she has earned school dollars that she receives for showing kindness and/or respect to her peers not once, but twice! Just goes to show that I'm doing something right. 

Additionally,  I have received her first progress report. She has received nothing but high marks of 3's, 4's and E's (for Exceptional) in all areas of schooling. Not only that, but she says she wants to be a Mathematician and learn how to count to 100! Which by the way she already knows how to do lol. 

She is doing very well with learning her sight words to teach herself how to read. There's only two words that she occasionally mixes up, so that at least is a work in progress along with cutting with scissors. Apparently she's just like me and likes to venture off the dotted lines paving her own path for herself. Ha!

Despite missing several days of school due to be constantly sick, I am impressed with all that she absorbs on a daily basis and has been learning. I'm very happy with the school I chose to enroll her into as well as thrilled with who she has for a teacher. I'm very much looking forward to seeing her continue to excel academically where she is and couldn't be more thrilled to see the little girl she will continue to grow into.

For what it's worth

I know the blog entries have become fewer and far between lately and I apologize for that, however, my top priority has and always will be in the best interest of Arley. 

There has been recent instances where I have noticed an influx in visitor views to her page and the mommy intuition in me has suspected certain wandering eyes keeping tabs for a while, especially when a particular someone decided to send me a friend request. I won't go into any greater detail because it's not really anyone's business, but I will say it has made me even more aware of the things I post both here on the blog and on her Facebook page. 

Due to this, I have been contemplating for some time now whether or not I should either make this blog private and viewable only to readers I approve, or making a brand new blog and only allowing those on my personal Facebook account to have access to it. I haven't decided what I will do just yet, but figure I will at least keep this blog open until the end of the year so that I have had ample amount of time to decide on what may be the best course of action moving forward.

With that being said, I do have a lot of updates to post and will try to post as many new entries as I can in the upcoming weeks as we head into the holiday season. For what it's worth though, we are super grateful for all the continued support we have received over the years and will remain to have as we continue to navigate this journey and all the new obstacles that have arised recently. 

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...

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...

Deja Vu

Life has finally been going on the upswing for Arley and I. 

So much so that I decided I felt comfortable enough to start a brand new job and re-enroll myself into school so that I could finish what I started two years ago before Arley got sick. 

With all the wonderful optimism of starting 2016 off right, I have this nagging feeling lingering in the back of my head of the deja vu that surrounds us. 

As you may recall 2014 started off exactly the same as this year has and what lay ahead of us just a few short months later turned our entire world upside down. Admittedly it has put me somewhat on edge as I try to remain positive and forge ahead hoping upon hope that everything remains as it currently is and no grand surprise is waiting for us as we approach the warmer months.

It's only natural when going through any challenging time in ones life to worry and tense up as the anniversary of said event approaches, as we hold our breath until it gets here and hope to let out a sigh of relief as it passes. 

I am trying so hard to keep myself preoccupied and take everyday as it comes so as not to overwhelm myself, but I would be lying if I said that I'm not worried about what lies ahead for April. 



On a different note though Arley has been blossoming at school. She loves it so much and looks forward to it everyday. She is doing extremely well and right on track for where she needs to be for Kindergarten in the Fall. 

Arley is also taking after me and following in my foot steps for dancing. She currently goes once a week and loves every minute of it. Right now she is learning the steps to her dance recital routine and already knows most of the words to the song that accompanies it. 

She is truly making me proud and makes parenting so blissfully easy. There are a couple minor things that we need to work on, like coordinating cutting correctly with scissors and learning that it's okay to have kids closely in her space when standing together in a line, but academically she is on point and her teachers have zero issues with passing her onto Kindergarten. 

For a child that missed out on that one extra year of preschool when she was 3, I still managed to keep her right on target with her developmental learning and she never missed a beat and has not a single concern. Fist pump to us for all of this success.

That's about it for now with the updates. There will be some more updates coming up very soon though so stay tuned for it. Until then....