Four months after diagnosis

I seriously can't believe that it has been only four months since Arley's diagnosis of Rhabdomyosarcoma. Seems like such a short amount of time and a lifetime ago all at once. (I know I said the same thing last month, but it's true)

This month has definitely been one of the hardest for us. My very independent toddler has become very clingy and super emotional. Can't say I blame her, but at the same time has made things more difficult. Just even leaving her to play while I run to the bathroom quick isn't as easy as it used to be. She needs to be with me ALL.THE.TIME whether if she's around people she knows or not.

I constantly have to remind myself that this all can't be easy for her, but at the same time mama just wants to pee for 5 minutes and have peace. Aside from being clingy and emotional she needs to have everything done for her. She no longer goes and grabs whatever toy she wants to play with, mama has to get it for her. Not always, but there has been a huge increase on dependency and a huge decrease of doing things on her own. I guess I got so used to her occupying herself when necessary that it's become harder on the both of us when a task usually so simple can turn into a meltdown if not done fast enough or the right way.

It has become exhausting and I don't know what the reasoning is. I don't know if I can really use the excuse 'It's because we are in Boston' anymore because let's face it we have been here for six weeks, but I know she misses her grandparents, her Papa (my dad) more than anything, so if we can just make it through Labor Day weekend then we will be back home in no time.

As for her G-Tube, we use it every single day now. She is on round the clock Zofran (nausea meds) because she gags at literally everything and she needs it to survive the day. Also if she isn't drinking enough then I can pump her little belly with some liquids so I don't have to fight her on drinking. I measure it out, pump it in and shes done. She also likes to help do it with me now and even get's to try it on mama afterwards.

Radiation however is not going very smoothly right now. She has burns on the entire left side of her neck and it has traveled up to the middle of her left cheek. It's really red/pink, raw, peeling and the most horrendous looking aspect of the cancer we have seen to date. She knows it's there, but it doesn't exactly hurt her which is a plus.

Because of this her voice has been very raspy and she has lost it a couple of times. It's very hard to hear her so you have to lean in real close. Her walking is still unsteady. She trips a lot, but I am usually (right there) to catch her so she doesn't normally fall, but she has a few times. 

She has been complaining though about her eyes, so I will need to discuss that at treatment today and see if we can get her eyes checked either before we leave here or upon returning home to CT. I haven't heard of any relation that could effect the eyes, but will have it looked into regardless.

Everyone that meets her still loves her. She has been mistaken for a boy a few times recently though. It's been fun coming up with a snide remark to these people. Like seriously you don't notice the flowers on her shirt, skirt, and shoes? A father the other day asked me "Is she a?" "Yes she's a girl. While I have no issues with dressing my son in pink and girly, it wouldn't be my first thought of the day unless asked." Sheesh


Anyways, I am very happy to see August on it's way out of here. I also know that I tend to repeat myself which is one of my pet peeves, but I can't help it. I just want to give my daughter the best third birthday next month because she deserves it and get us back into our usual (not so normal) routine. Until next time friends...

Four Day Break

Hey all I know it has been a while since I have updated, but we haven't really had too much going on or any real significant changes.

Arley was granted a four day weekend this weekend. No radiation treatment yesterday or today and we will try again on Monday. My poor girl has burns all over the left side of her neck and part of her left cheek. It's starting to peel a bit too.

I have been rotating between two different creams as well as Neosporin to hopefully help it to clear faster. Her voice has also sounds like a squeaky little mouse and has been like that for days. You have to either lean in close to hear hear or have no outside noise around in order to understand her.

Her walking is still very shaky at best, but I knew this was a side effect to both the chemo and radiation so we are both just going to roll with it.

We will try to have treatment again on Monday and may need to schedule another break. Looks as though we will not be coming home any time soon, but we are still hopeful it will be before her 3rd birthday.

This has been such a stressful and exhausting experience and we are both ready for this portion of her journey to be over so that we can get back into our routine in CT in another couple weeks.

Anyway, that's about all the updating I have for now. We are just taking everything day by day and one at a time. Only way to do it because this is all very overwhelming. Hope you all are getting ready to enjoy your weekend and will update again soon. Until next time...

Halfway done with radiation

Today officially marks the halfway point in Arley's radiation treatment. It's hard to believe that we are 3 weeks in and have 3 more to go. So much has transpired and it seems like forever ago that we made the temporary move to Boston. 

In patient treatments, G-Tube surgery, Dreamnight at the Zoo, Fenway, the Buchholz Bowl so much in such a short amount of time and still we have a lot left to do and see before our time here comes to a close.

Arley has been doing well with her treatments, but we still don't know how effective they have been just yet. She has had setbacks in regards to her appetite and weight yet again and has to take daily nausea medicine now to hopefully combat this and get her back on track. 

She has been more tired lately and often takes a long nap in the middle of the day to recharge herself. This whole experience has been so stressful and we are ready for the summer to be over and to be back home in Connecticut. 

Speaking of which, tomorrow is going to be bittersweet because one of Arley's little friends Addie, is graduating tomorrow and heading back home. While its wonderful that she gets to put this wonderful triumphant feat behind her, we are certainly going to miss her, her older sister and parents a lot. Working on puzzles together definitely won't be the same without them. They are wonderful people and I'm happy our lives crossed paths even though I wish it were under better circumstances for our kids.

It's been a relief of sorts to have someone who is going through the same situation as us to relate to and really honestly and truly understand what its like to be on this rocky roller coaster ride. Nobody quite understands like a parent who is currently in your shoes. To vent, to laugh, to complain, to lend an ear is worth its weight in gold. There's just something to be said about looking at someone, not saying anything and realizing that they truly feel for you as you do for them.

We wish Addie the best on the rest of her journey and I hope we can get the girls together again before the holiday season is upon us, I know Arley would love that!

Sigh... our turn is so close and yet still so far away. I've been trying to come up with some fun things to do to occupy our time and give us small things to look forward to. For starters, Arley gets to see her uncle James tomorrow which is really exciting and then I plan on taking her to a local farm I found on Google that has a petting zoo and pick-your-own fruit that will be something cute to experience. (She can't touch the pets or feed them, but she can certainly look!) Other than that its business as usual. Treatments everyday while we prepare for her chemo next week (in-patient) and count the days until we are home again. So far now, until next time friends....

Updated GoFundMe Account

Recently I was approached by someone who was interested in writing a story about Arley and we had an extensive interview and I gave insight as to what has transpired, what she is currently enduring and the long road we have ahead of ourselves.

It has also been discussed to reach out to the media to gain attention because of the rarity of the cancer she has. Because of this, I didn't want my friend who created the original GoFundMe account to be overwhelmed should it take off, (We all know the power of social media) so I went ahead and created another account for this specific reason.

Not only that, but we have started to receive our first batch of medical bills from four months ago and my heart immediately sank as to the amount. I honestly do not know how I am going to be able to afford all of her medical bills as a single mother who has been on a leave of absence from her job since this all started.

Taking care of a sick child is a 24/7 job and leaves me no extra time to work a legitimate job at this time, so trying to figure out how to pay all these expenses is leaving me very overwhelmed and stressed out. If you knew me personally you would know that I never ask for help, if I need something I do it myself 100% because that's just the person I am, but now is the time where I truly need to swallow my pride so that I don't go any more in over my head than I already am.

If you are feeling generous and would like to donate, the fund can be found here: Go Fund Me Any little bit helps and it all will add up in the end. Both my daughter and I appreciate everything everyone has currently done for us. Thank you friends for supporting us in our fight to kick this cancer to the curb.

Aversions

No matter what you do in life you are constantly going to be judged for it. It's human nature and I guess you can say it comes with the territory of living on this planet.

What I do have a problem with it when people judge you for things they know absolutely nothing about. 

I belong to a really fantastic chat group. I may have mention it before, but honestly couldn't tell ya. Anyway there was a topic posted by someone that really got me going. I guess you could call it a "hot button topic" as I stewed about it hours later after already saying my peace about the whole thing.

I didn't read the article that accompanied the statement the person wrote because to me had zero relevance, what bothered me the most was that she said "I peek into others carts especially those with children and I am shocked to see what they are feeding themselves let alone their children."

My reply- Then you would be shocked by what you see in my cart considering my daughter has texture issues and her taste buds are constantly changing due to radiation and chemotherapy. Don't make judgements when you have no idea.

My next thought was (although someone beat me to it) Why do you care? The question went unanswered, not surprising.

What grind my gears the most about this is what would you do if you came across my shopping cart and it looked like this?

Are you going to assume I'm a terrible parent because I feed my kid nothing but "junk"? Are you going to assume I must be on food stamps because I'm not buying any "healthy" foods for my child?

Well allow me to let you in on a little secret in the cancer world. Nobody gives a fuck what I feed my child so long as she is eating they don't care what it is and at this point you shouldn't care either.

Let me just say this WASNT a comment directed at me or in regards to having a child who is sick with an illness, but I most definitely took this to heart because really what would you have done if you saw my cart?

Nobody has any idea what it's like for a Cancer patient to battle foods and liquids on a daily basis. Their taste buds are going through a hot mess right now and not only that, but factor in that my child still has a texture issue limits what I can feed her even more.

I guess I can be thankful that my daughter isn't the boy on the unit who eats nothing but bacon all day everyday because that's all he can handle simply because I don't know how to make it! 

As a parent I will go to the ends of the Earth to satisfy any craving Arley has. I jokingly compare Arley to a pregnant lady because she has weird cravings all the time and also has food aversions like you wouldn't believe.

I am already very limited on what I can feed her so when you take away one of her most beloved foods your heart sinks because it makes you that much closer to having to give feeds through her tube.

She also has had a decrease in her fluid intake by mouth as well, but think it has to do with getting fluid with her treatment so it fills her up a lot. As a result I have started to need to give her a liquid feed in her tube before bed just to make up for what she hasn't consumed on her own.

Not only that, but now she has to have nausea medicine on a daily basis as well. She threw up three mornings in a row and her gag reflux has been on overdrive in the mornings as well.

Again, can be similar to a pregnant woman suffering from morning sickness. However good news for pregnant women though is that it doesn't usually last the whole pregnancy (it can!) and will go away once the baby is born anyways. Cancer patients don't have that kind of luxury.

Another thing is the medical team is more concerned with her keeping weight on no matter how it's accomplished. Arley has continuously lost weight every week for the last four months. She has maintained it a few times but over all it's been quite a bit of loss.  

So the next time you're at the grocery store and you happen to "peek in" at what your fellow shoppers are purchasing, keep the comments to yourself. You have no idea who they are shopping for or why and quite frankly it's none of your damn business either. 

Medical reasons, illness, emotional eater, fast metabolism, or just because are all suitable reasons to fill your cart however you please. Until someone else is buying our groceries nobody has a say and I plan on keeping it that way.

Until next time friends....

The Boston Red Sox

Anyone who knows me knows that I am a New York Yankees fan. I used to be a Red Sox fan when I was younger because I'm originally from Massachusetts however the reason I switched teams is because when you are young and unaware of the rivalries you tend to just follow your favorite players wherever they may go.

That was the case for me. Wade Boggs, Roger Clemens, and Mike Stanley (long time family friend) all got traded to the Yankees and therefore I became a fan and just never looked back.

Although admittedly I am a newfound fan of the Red Sox for a completely different reason. You see the Sox really love children and they especially hold a special place for sick children as you can clearly see every year when they host the Jimmy Fund, and Arley was one of a select group of kids to be able to meet some of the Sox over the last several days.

On Wednesday Arley, myself and a couple other people from Christopher's Haven (the place we are staying at in Boston) were invited by Clay & Lindsay Buchholz to see the Sox play the Blue Jays. 

We were granted field passes and got to watch both teams warm-up, meet with the Buchholz family and enjoy watching the game.

Arley & I didn't last very long at the game though because of a mix-up so unfortunately we left at the top of the second inning. It was such a bummer though because we had been looking forward to the game for days. Oh well perhaps next time.

Then yesterday Arley was one of several children honored as a special guest for the 2nd Annual Buchholz Bowl which is a charity event that raises money for sick children as well as for Christopher's Haven.

Arley got to enjoy the red carpet and take photos with all the players that walked by. She even got to meet Wally the Green Monster!

Once inside we walked around to look at the fabulous items up for sale in the silent auction. The 2014 American Girl Girl of the Year Isabelle doll was up for grabs and it was so tempting to place a bid on her!

Anyway, after about an hour of walking around all of the kids were split into teams with either a Red Sox player or a Boston Bruin (I think Shawn Thorton was the only Bruin, but I could be wrong) and then the fun of bowling started. We were placed on a team with JBJ.

Jackie Bradley Jr (or JBJ as he likes to be called) was the most sweetest, genuine, down-to-Earth guy I have ever met. He was very attentive to Arley and helped her carry the bowling ball up to the lane and showed her how to bowl and knock down the pins.

He got down to her level and treated her like an ordinary kid and not one with an illness. I have a lot of respect for him because he was just amazing with her.

Once the bowling really got going we decide to mingle around a little bit. We spoke to and got photos with Tim Wakefield, Jason Veritek, Shawn Thorton,    and even Ms. Massachusetts was there.

Mrs. Veritek even sought Arley out after meeting her earlier on the red carpet to talk to her about how she was feeling and her treatment. She even kicked off her heels and helped Arley bowl too!

All of this would not have been possible if it wasn't for Mr & Mrs Buchholz. The work that Clay & Lindsay do for the Clay Buchholz Foundation is phenomenal     and should most definitely be recognized. The pair of them are the absolute sweetest and down-to-Earth as well. They gave Arley a night to remember and it was a lot of fun for her to get out and enjoy herself and not worry about being sick for the evening.

If you are ever feeling generous and would like a solid organization to donate your hard earned money to, I would like to suggest it be The Clay Buchholz Foundation or to Christopher's Haven. The work that these people do are so wonderful and there needs to be more recognition for them so that they can continue to help the families of sick kids.

While I may not be a hardcore fan of the Sox out on the field, I am a fan of all of the work they do for children every single year whether through the Jimmy Fund or granting wishes from Make-a-wish or any of the other ways they try to make a difference in a child's life. 

And that to me is enough to respect them and to support them, at least when not playing the Yankees...😜 ⚾️🎳

I will upload photos once I have my laptop so keep checking back as they will be added soon. Until next time friends xoxo