Round 3

We are finally back at home from another grueling round of chemotherapy. This visit was a lot different from the previous ones. Arley literally had zero appetite to eat or drink the entire time we were there. She refused everything no matter what it was and believe me I offered her plenty. 

It was really scary actually because she has never refused to eat before during a hospital stay. While it still can be normal to not want to eat usually eventually the kids do. This required an extra stay from us to monitor her and to make sure she consumed something before being released. 

She also spiked a fever a couple of times during our stay as well which required more monitoring but thankfully the fever would break on its own and didn't require any extra medications/antibiotics. 

Arley also seems to be getting used to her visits and certain people which makes the experience go more smoothly each time we go. She still has her moments as I am sure all patients her age do so it shouldn't be too much longer now until she's a pro at it. 

Also, I found out through the grapevine that Arley is starting to become one of the floors favorite patients which made my heart swell with pride. I am happy to hear that others think shes a good patient to have. 

We also finally got our first male nurse too! He was super attentive to Arley and it was really cute to see the way he interacted with her. She had him wrapped around her little finger like you have no idea. He actually got down to her level several times and asked her questions about Mickey Mouse Clubhouse or the game she was playing on her iPad. Kudos goes out to him for a job well done taking care of my baby.

On another note I am also having difficulty finding hats that I like to protect her head. I prefer the look of Gymboree hats especially since her wardrobe mainly consists of Gymbo now, but for some reason what they have out in stores right now for hats are kinda hideous! I just want to make my daughters head look stylish while protecting it from the suns harmful rays lol.

Oh well, fingers crossed that when they roll out their next line that I can stock up on some hats. They used to have a really great summer sale at the beginning of June but there have been rumors that they are either doing away with that sale OR only certain level stores will do it. I'm really hoping nearby locations have this stock up sale because I will probably buy out their entire stock of hats. Who knew hats were so hard to come by these days!

I guess that's it for the update on Arley for now, tomorrow I start hitting the pavement again looking for more donations from some companies that I didn't get a chance to visit last week. Until next time friends xoxo

A month after the diagnosis

Wow! It's been one month since I got the news that my daughter has cancer. What an interesting month it has been to say the least. It has been such an emotional roller coaster ride and this is only just the beginning.

The outpouring love and support Arley has received is just phenomenal. I mean seriously I had no idea how many people and lives she has touched but with the way everyone has been rallying around her since this all began just goes to show and prove that she holds a special place in a lot of peoples hearts.

We have learned so much about Rhabdomyosarcoma in the last 30 days that my head has been in outer space for a long time. It's been quite difficult to wrap my head around all of this information and to process it at the same time that I was working on my last few weeks of school. My professors were so wonderful and accommodating and I'm glad that they didn't give up on me and helped me to see things through the end with finals.

I have also realized lately that my friends are truly wonderful. So many of them near and far have made sure that Arley knows just how many people are thinking about her. We have received so many wonderful gifts and tons upon tons of get well cards. I have read them all to Arley and they help her feel so good to know that people are thinking about her.

One month in and we have had numerous tests (Petscan, CT scan, Bone marrow, ultrasound etc) several rounds of chemo, lost all of her hair and have adapted a newer way of life. Right now we are gearing up for another hospital stay this week. I for one am not looking forward to this visit. There are several reasons which for now I will keep to myself, but we must push on and do whatever needs to be done to ensure Arley is happy, healthy and thriving so she can beat this.

Another thing we have started to tackle head on is a benefit to help raise money for her medical bills and travel expenses that will be upon us before we know it. Moving to Boston for six weeks is going to be hard and rather lonely I would imagine considering we live 2-3 hours away from there right now, but I have a feeling that some family & friends will still visit us if they can. (Least I sure hope so!)

I have been completely overwhelmed by our local communities support through all of this as well. Everyone we have spoken to has had absolutely no hesitation with being generous with their donations. We have at least 30-35 donations already big and small and are still striving for more. I can not even tell you the name of a single person who hasn't tried to help us with this in some way. When they say it takes a village it truly does because everyone even strangers have been so touched by Arley's story.

Tomorrow I hope to be back out on the hunt for some donations and big ticket items for our extra special raffle so that this benefit is a huge hit. My sister in law was wondering on making the tickets this weekend so I hope to start selling those by weeks end and into the start of June. We have less than four weeks until this benefit so I want it to be hugely successful so that our guests are left full, and happy with some fabulous prizes and that we don't have to worry about how we are going to afford everything.

Well, that's all for the updating for now. I have decided to include the latest photo of Arley because we have to teach the world that #baldisbeautiful because my daughter surely is.

#nohairdontcare

The Results Are In...

I just logged into my college homepage to see if our final grades had been posted yet or not. I wasn't sure when they were due exactly or when they would even be submitted so this was purely just random but I didn't think I would see any until next week, but guess what they were posted.

Without further ado...drum roll please...



I finished with exactly what I hoped I would. 3 "A's", 1 "B" and an Incomplete. Photo is attached below for proof or it never happened!

I seriously can not even believe this right now. I am so proud of myself for sticking it out in the end and not letting what's happening to Arley get in the way of accomplishing my goal to make her proud of me. My GPA, although originally had hoped for a 4.0 had me finish with a 3.67, but I own that 3.67 and am very happy with my results. 

This right here is proof that hard work and determination truly pay off even when times get rough and you don't think you're gonna make it or see the light at the end of the tunnel. Getting these grades are huge to me and I can't wait for Arley to wake up so she can share in my excitement!

So grateful to all of my professors as well who believed in me and encouraged me this last month. Seven years ago I finished school the first time with a Bachelors degree in Criminal Justice, this time I am working towards an Associates in Drug & Alcohol Recovery Counseling and I am not one step closer to accomplishing that dream. 

Totally on Cloud9 right now and will be for the rest of the day. I just wanted to come on here and share this with all of you. Until next time friends... xoxo

Confession

If I can be truly honest with myself here for a minute I have to admit that I am really struggling with Arley's hair loss. 

It hasn't even been a full week and that cute bob/pixie cut we did, what like not even three-four days ago is now long gone. We have reverted back to what I like to call the "new born" stage where there are patches of hair missing on her little head. The thin has become much thinner, and the color has changed drastically right before my eyes too.

All Arley has to do is just sit next to me and the hair literally just falls out of her head. There's nothing you can do to control it either. When we were out for a ride earlier today going around looking for donations for the benefit you should see the headrest to her car seat, it was like a magnet that took her hair away.

I literally have no idea what to do. It needs to be shaved, but I don't know if I can bring myself to do it. She is fully aware of what is going on as I mentioned before her head itches and shes constantly touching her head and says "Mama my hair, my hair." It has started to effect her eating/drinking because it is everywhere and in everything.

This truly breaks my heart into a million little pieces. I thought the hair loss would be something gradual over a period of a few weeks or something so that I would have time to make sense of this change, but I didn't know that it would be so rapid, nobody warned me about that. Why didn't anyone warn me about how quick this would happen?

This.Shit.Fucking.Sucks like you have no freaking idea. I feel like I am seriously dying inside. It's just hair, I know, but my almost three year old now looks like she's about 18 months or younger. I feel like we are stuck in the Brad Pitt movie The Curious Case of Benjamin Button trapped in a sick and twisted time warp. I seriously feel like we are traveling back in time to her younger days.

Earlier I went out with Jenn, Ryan's mom (you know Arley's boyfriend...) and she told me that shes growing Ryan's hair out so that when it comes time to shave Arley's the two of them could get it done together. That broke my heart into a thousand more little pieces. Seriously, sweetest fucking thing ever anyone has said to me in the last month since this happened. 

I honestly don't even want to go to the children's hospital on Tuesday. I don't want to hear a single comment about how Arley has started to lose her hair because I think I will probably lose my shit right there in the Oncology department. I swear it. I know they see this all the time and are probably used to it, but I don't even want it mentioned right now.

The only thing that would probably make me feel better at this point is if I can find some super adorable and highly fashionable Gymboree hats for her. I went to our local store down the street and the stock sucked and nothing was even remotely appealing which stinks because I have a 20% off coupon and a $10 off reward certificate to burn. Will probably take the 45 minuteish ride to the Outlets and see what they have in stock from last years inventory.

That will only be a temporary fix until I can work up the courage to shave Arley's hair completely but it's the least I can think of to do at this point. I know I can't keep prolonging the inevitable, but I can sure as hell try right?

Fuck.

That's all for now until next time friends...xoxo

Mom Brag/Benefit Dinner

Doing a slightly different post today because I wanted to take one short minute to brag about myself if i may... (heck it's my blog of course I can!)

I am happy to report that I officially finished my first semester back at school and completed all of my finals despite missing a lot of classes within the last month.

For those of you who don't know, I had enrolled in school back in November for the Spring semester. My classes started at the end of January and I had been doing extremely well for myself up until this all happened with Arley. I still hope to finish strong with at least 3 A's, 1 B and an Incomplete, but official grades won't be posted for at least another week or so, so this is just a hunch and how I hope to finish, but I will report back with my grades no matter what I get.

I must admit however that I'm very proud of myself for sticking it out and committing to finishing regardless of the situation. That's one thing I hope to really instill in my daughter that even though things get tough you have to learn how to keep trucking along until the mission you started is finished. Life is always going to throw hiccups at you but learning how to manage yourself and working hard to figure out how to accomplish your goals will get you to where you need to be.

Also this week I have started to gather up donations for Arleys benefit dinner that we are having next week. Two of Arley's play date friends moms are helping us throw together this benefit and we are having a raffle as well. I went out to the community today and the support was amazing! I already have five local businesses that have donated with a few more to pick up. Most of the businesses wanted flyers in exchange for the gift certificates so I had to go home print some out and go back tomorrow with them to exchange. I am beyond excited and pleased with the community support.

Although, with the holiday being on Monday and Arley being admitted back to the hospital on Tuesday for a few days, it makes my time this week a bit limited so I hope to be up a little early tomorrow and back out into the community to get some more donations for the raffle. 

A few of my friends on Facebook near and far have also stepped up and are willing to do whatever they can to help donate as well and make this benefit super successful. I just can't express enough how much this all means to Arley and I. To know how much my daughter has touched the lives of all of whom she has come in contact with is amazing. She's only 2.5 but has quite the following of support rallied around her and together we will beat this.

For now, I am off to compile a list of other places in town and surrounding areas that I can go to. My best friend Cassy is also going to tag team with me tomorrow as well so this will be something fun for us to do together. Until next time friends.... xoxo

Snip-Its

...So it has officially started...late last night Arley started losing her hair...
Originally I didn't think it was too big of a deal because it appeared to just be her ends splitting so I really didn't pay much attention to it. Well, it wasn't until I got home from work today (my first day back in almost a month!) just how serious the hair loss is. Thankfully it wasn't coming out in clumps as I am sure that would've freaked her out, but the hair was falling out rapidly enough for me to question what to do about it.

A friend of mine whom I trust very much was supposed to do it, unfortunately she was very busy with her own business that she couldn't see Arley until tomorrow, but with a scheduling conflict for myself I needed to act right away. (Sorry hun!) So I took Arley to a kid friendly hair salon and told them what I wanted done.

The whole ride over my stomach was in knots. I knew this was coming, they said it would. They even said it should start around week three (which we are in), but I still wasn't prepared and don't think I ever would have been regardless. 

Arley did so good and I'm very proud of her. She sat so still and hardly moved an inch and not a single peep was made from her. However I felt really bad for the hair stylist because as she was combing Arley's hair to get it just so to cut, hair was just coming out like you wouldn't even believe.

This broke my heart and inside I was crying, but refused to do so in front of Arley as not to upset her. Her little bob/pixie cut looks super adorable on her, but it won't be too much longer until she will probably need a full shave. 

Her hair is still falling out all over the place. She was recently sitting in my lap and my whole shirt is covered with strands of her hair. My hair sheds too especially when I am due for a trim, but not even mine comes out as fast as hers. 

Also her scalp is itchy which we were warned about so she definitely knows that there is some kind of issue going on and I just wish I could make it all better for her.

At our recent shopping trip I purchased a few hats from Gymboree but I am thinking of buying some more. I have a $10/off reward coupon as well as a 20%/off coupon to combine so I figured I will get her some more hats while I can. Also have some super cute hair bows that I plan on putting on her too. Can't wait to show you all what those look like!

Now I know hair is something completely superficial to be worried about, but I am. While one could argue "Oh it will grow back," "It will come back thicker, curlier, darker" yadda yadda that's not the point. (And I wish people would keep the comment to themselves) Just because it will grow back doesn't mean it won't suck in the meantime. I have loved my daughters long golden locks and now they are gone. 

I'm also afraid of the judgement. Kids can be so cruel and they have no filter because they just don't understand things like this. I'm worried about how my nephews will react and some of Arley's playdate friends. Thankfully though two of Arleys best friends are boys so I'm hoping they just think that Arley looks like them and isn't any different. Which is easier to hope because they are her age, it's the older kids I'm worried about and Arley knows several. 

I don't want to put any parents into awkward positions who are not ready to discuss serious illnesses with their kids yet. I wish rather than needing a guide to becoming a new parent I wish there was a guide with how to explain illnesses that could potentially pop up, but then not sure how much good that would do either because if you ever met a pregnant woman they are always filled with 10,000 emotions. 

But since no such guide really exists I took it upon myself to buy my nephews the following book:

And I would like to encourage people to read it to their children even if they don't know someone personally touched with cancer, unfortunately someday they will. I bought this book at my local Barnes & Noble bookstore, but I'm sure it could be found in other stores or online sites as well. This one just seemed the most interesting, but there are others out there.

As mentioned the other day Arley has been losing weight and I have noticed that her normally chubby cheeks are starting to thin themselves out and she seems to be getting smaller. Her doctors and I are keeping a close eye on it, but the thought of her needing a G Tube is beginning to worry me as well.

Again, all I can continue to do is take one day at a time with her and continue to hope for the best and hope for the continued strength to get us through this. Someone also recently asked me if I planned on getting her a wig and the answer is no. She's too young in my eyes to need one and we are approaching the summer months so I don't think it would be necessary anyways. If she was at a school age I very well may consider it, or just wait until she approached me with the subject but alas hats and bows will have to suffice for now.

Well I am off for now but I will be back soon. Until next time enjoy these photos from her haircut... xoxo

Here's what we learned today

After almost a month of receiving the news that Arley has cancer. We finally know which of the three Rhabdomyosarcoma subtypes she has as well as what stage she is in.

The subtype is called Embryonal Rhabdomyosarcoma. Now while this IS a common type seen in children and usually has a better outlook, it all depends on the patient. We had a very long discussion with Arley's doctor today and while you always want to remain positive this is still a rare cancer and tons more research needs to be done on it.

There have been many people I know who have gone off and done their own research, which I advise and encourage you do however what some do not realize is the severity of this kind of cancer among children. The placement of where Arley's is is very critical. It's located near a lot of nerve endings and near her brain.

While she has no cancer in her brain, the location of the tumor is in very close proximity which makes this a very delicate situation. After her 42 weeks worth of treatment the prognosis is still uncertain. It can come back at any time, in any location throughout her body and during radiation treatments when the Rhabdo cells get knocked down they can form into another type of cancer as well. This is all very real and something very serious we are dealing with.

We always shoot to aim positive and will continue to do so as that's what we need to cling to, however I felt obligated to address this because people have been coming to me with information that isn't entirely accurate and it's upsetting because our prognosis is very much up in the air. Her doctor can't give any definitive answers and therein lies the issue. 

Again, it depends on the patient which I can not stress enough. Arley has only been receiving chemo treatments for three weeks now, while she has done relatively well so far it takes some time (for some patients) to develop a reaction to it whether positive or negative. Also her doctor has stressed that at any time she can stop reacting positively to it even if she has shown to be handling it well previously. 

She also has not begun her radiation treatments in conjunction with her chemotherapy either so we don't know how she will respond to have both done at the same time. Another thing is she has not been successful with taking her antibiotics that she needs to combat this as well. She's honestly too smart for her own good. We have been given the green light to go ahead and try another new antibiotic but the side effects are no walk in the park and they usually do not recommend giving it. The only other option (the third) is another oral antibiotic but that too is out of the question because she just won't take it.

She has realized that we mix her drinks with the medicine and therefore as a result refuses to drink anything that isn't prepackaged (like kool-aid) because she knows you have to open it to drink and it's not something you put into a cup for her.

Finally, Arley has Stage III it's not the worst, but it is also by far not the best to have either. We as a family have a very long road ahead ourselves and continue to take everything one day at a time. I will continue to do my best to remain on the path of positivity as that is what any mother (or anyone in this situation really) hopes for their child. Again, I do encourage you to do your own research but please be mindful of how you perceive things found on the internet because you don't get the whole picture that way.

Thanks for reading, until next time... xoxo