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

A bit of a history lesson

Yesterday my parents, Arley and I traveled to Plymouth, Massachusetts to visit my sister and her boyfriend. Before we got to Plymouth we stopped off in Foxboro at Gillette Stadium to visit Patriots Place. (The New England Patriots play there) I got Arley a brand new purple hat and a Tom Brady t-shirt to show her support when we move to Boston. After that we traveled to Plymouth.

We had a lovely time, the weather was perfect, Arley felt good enough for travel although she had to be carried or pushed in her stroller frequently (due to the chemo). We visited some of the cute little shops near Plymouth Rock, had a delicious dinner at a local joint, went to the beach, a playground and even saw the famous rock in person!

I absolutely love Massachusetts and it's rich history that the state has. There is just so much of it and a lot I hope to experience with Arley very soon. Salem, has been on my bucket list for years and I'd love to visit in the fall this year if at all possible.

As long as Arley is up to it I hope to take her out at least once a week to some place new. When we move to Boston in July for six weeks we will be pretty much hospital bound so I want her to soak up as much fresh air and fun as possible. It won't always happen and it won't always be easy and without hiccups along the way, but I don't want this to define her and keep her from being a typical almost three year old.

Here are some of the photos from our visit, I hope you enjoy them!

Until next time friends.... xoxo

Hoping for high level counts

Today Arley has to go in for a level count check up for the chemo she received on Tuesday to make sure that her blood count levels, platelet levels and ANC didn't dip too low. They have started to dip which is normal, but with her lack of energy and sporadic eating/drinking they are thinking she may need a blood transfusion to get her through the weekend until her next chemo appointment.

If you read my last post warning about the transfusion you know how apprehensive I have been. I know its necessary, but I'm hoping upon all that is hopeful that her levels are high enough so that we can avoid all of this.

Well I have some good news to report. Thankfully the hope Gods must have heard me because her levels (while still low) were not nearly as low as putting her in jeopardy of needing a transfusion. YAY!!!!! Her levels are literally teetering right on the line of needing a fusion so just because she didn't need one THIS time doesn't mean she won't need one next. As things progress the likelihood of her levels dropping in the range to need a transfusion increase so it is evident that she will need one soon.

Wow, dodged that bullet eh?

Some other good news is that her ANC levels were high enough to where we can stop giving her her daily shot of medicine. Great for my mom who is the one to administer it and even better for Arley because she screams bloody murder before, during and after. Such a relief will be had by all on that account. She may need to have the daily shots again after she gets admitted into the hospital to receive her bigger rounds of chemo so just know that this is ONLY temporary, but still much appreciated for now because that gives her a rest of it for about 10 days.


On a much different note, Arley and I had a Mothers Day redo yesterday. We still went into Massachusetts but didn't go to where we originally planned this past Sunday because I didn't want to jinx ourselves. She did fantastic! Absolutely no vomiting occurred. She slept the whole way into Mass which I think helped tremendously and we had fun shopping. The way home she slept for about half the ride so I think that may have helped with any possible motion sickness she would've had. 

Other than that there is no other news to report. We go back to clinic on Monday (in the middle of when I'm supposed to take my final of course...) and will have a new report for you then. In the meantime I plan on relaxing with her and enjoying our weekend. May take her to the library tomorrow for something low key because it's supposed to rain, but we shall see how she feels in the morning. Until next time friends.... xoxo

Round 2

Today Arley went in for her second round of chemo. Before she could get it though we had to check her numbers and make sure she was healthy enough to get it.

Her numbers had dipped since her first round but not significantly enough to NOT receive chemo today but enough to make them schedule us a follow up count check for Friday to make sure her numbers didn't dip even lower. If they did then they will order for a blood transfusion to get her through the weekend before her next round begins.

Now I don't know about you but that thought has me a little worried. I hear so many horror stories about someone needing a transfusion and then they get blood that was tainted. (I'm not going to explain that thought unless you can figure out what I mean by that on your own) 

That's the first thing that comes to my head when they say that. I mean, I've never had to research a blood transfusion before and what the process entails to ensure that the blood they have is good but I probably should do that sometime soon to ease my mind a bit because my mind just wanders to that place where something seemingly innocent turns into something much more than it is.

I guess the fear of the unknown has been on my mind lately and my faith has been tested constantly recently in the past few weeks because remember cancer was the least likely possibility on the totem pole that was wrong with my baby. 

Science though has come a really really really long way and I have to remind myself of that too. It's hard to forget that sometimes when you go through something like this because your mind immediately wanders and you just can't help it. Let's just hope that her numbers don't dip too far down to where she needs it so this mama doesn't seem like a cuckoo bird with the thoughts and uncertainty rolling around in her head.

The way the nurse mentioned it was really no big deal like a shrug of the shoulders how routine it is to transfer blood into a child. While I'm sure it IS, it still just makes me uncomfortable.

Anyways.... On a much different note Arley lost weight again. We are down now three pounds since this whole ordeal started. They are going to watch that extra close to make sure she doesn't lose too much. Arleys appetite differs so much lately from day to day or even meal by meal. Some days she skips a meal some day it's two. Some days she only wants snacks and some days only wants drinks. It's to the point now where I have to lay out several options and tell her to choose two and go with that otherwise she will just refuse everything and I'm not having that.

We are not concerned about calorie intake so whatever she is willing to eat or drink I give it to her. Still within reason of course but mostly whatever she thinks she can tolerate she gets. The radiologist told me last week that one male patient of hers wanted absolutely nothing but bacon. Bacon morning, noon and night and he got it. If that's what made him eat then that's what he received. 

I also did voice a few of my concerns lately and the answers I received were reassuring so that's a huge positive, but the two questions I needed answers to the most (what type of Rabdo and what stage she's at) were skirted around the inquiries because Arleys regular doctor was out today so we will have to ask him on Friday. Grr... That annoys me because everyone should be on the same page and should be able to answer me if asked. Sigh... In a perfect world I guess...

Arley will also be getting a new medicine via IV fluids and only once a month vs her other medicine that she gets twice a day for three days a week because she's still throwing it up or refuses a drink when she realizes that medicine is in it. While it's great to only get it once and through IV rather than orally it's not the best one she needs. As she gets older though she will probably be moved back to the meds that's making her sick now because she will understand better that taking the medicine will help her. Right now she's still too young and gets so worked up that it makes her sick immediately after the medicine is administered.

Overall though aside from the dip in numbers she's handling everything like the little trooper she is. 

Well right now she's relaxing watching Mickey Mouse Clubhouse and I need to study for the final I missed today because I'm taking it tomorrow after my night class. Wish me luck though because I'm too stressed to retain this information anyways and I'll be lucky to pass with a "C" if I pass it at all. Ugh lol. Talk soon friends xoxo

Mothers Day

I was looking forward to today with my daughter. I had planned a surprise trip into Massachusetts especially for her. The weather was going to be really nice today, and we even had similar matching dresses to wear for the occasion. If you knew me, you would know I only wear dresses for events that require it, but I figured since my daughter loves to dress like Rella (Cinderella) often, why not do something special just for her on Mother's Day.

We woke up really early, got dressed, packed her backpack with some snacks and drinks for a little picnic and then headed out the door to begin our hour long drive over the state line.

Things were going really well, she was singing along to the music and just relaxing. As soon as we arrived though, as I literally put the car into park she coughed and threw up everywhere.

I'm not sure what made her do it. If she may now suffer from car or motion sickness as a result from the chemo or if it was just something that transpired randomly. She didn't have anything to eat or drink in the car so I know it wasn't brought on because of that.

I took her out of the car and cleaned her up real good and asked her if she still wanted to go see the butterflies. She said yes, so I took her hand and led her inside. Once inside she told me she wanted to go bye bye. I asked if she was sure and she said yes. Once outside she said she wanted the butterflies. This back and forth went on for a couple minutes but then she told me several times she wanted to go home and go bye bye so we did.

To say I didn't cry for a good 15 minutes on the way home would be a lie. I was completely heartbroken. Seems like every time I try to plan something on the holidays it goes wrong without fail. 

I know this isn't Arley's fault by any means, but it still doesn't stop the twinge of hurt and guilt I feel. It makes me wonder if we are even going to have as much fun this summer as I hoped. Last year she was sick the entire summer because of a nasty virus, this year she will be going through her treatments. 

Anyway, the rest of our day was pretty uneventful. We took a nap together and are currently on our third movie (Monsters U). Tomorrow I go back to school and begin finals week. I am so unprepared, but will try my hardest to at least finish, all I can hope for at this point.

Here's hoping that everyone else had a much better Mother's Day than I did. Until next time xoxo

Under the weather

Today Arley has been under the weather. She's been gagging all day and I'm just waiting for her to throw up.

She's not eating or drink in and what little she tried to have a little bit ago (drink) she spit back up.

I know it's only been one day home from the hospital and then pushed tons of fluids onto her that may be the reason why she's just not interested today but I hope she eat or drinks something soon. If she doesn't, immediate hospital visit and they will probably put a G-tube into her.

I really don't want that to happen, but I realize it's a possibility and will do whatever to keep my daughter alive and healthy. 

I'm trying to take everyday just one day at a time but I'd be lying if I said everything was all rainbows and butterflies. I'm upset and rightfully so. Don't understand why this happened to my baby or even where the hell it came from. There's still so many unanswered questions and the unknown is what's so difficult. 

Also this week coming up is my finals for school. I have missed so much that I don't even know what's on my finals. I worked so hard this semester to get straight A's that I'll be lucky if I pass everything now with a C. This too upsets me because I worked my ass off and now I'm being slightly derailed because of my daughters Cancer. Rabdomyosarcoma to be exact. I'd like to put two middle fingers up and say "screw you and the damn horse you rode in on." 

We were doing just fine without you so anytime you want to be on your merry little way would be fine with us.

Anyways, Mothers Day is a couple days away and I want to do something absolutely special for my little lady. It's supposed to be in the low 80s and sunny. Considering a picnic at the daffodil park but am open to any suggestions? Hope you all are well, talk soon xoxo

So far so good...

So far Arley has responded well to the chemo treatment. She doesn't have too much of an appetite or drinking much on her own though. I think it probably has a large part to do with the amount of fluids they are putting into her and her gag reflux is through the roof all of a sudden lately too.

She's getting some kind of shot today as well that she will need to have daily I believe. Everyone talks so much about needing x, y, z but never really explains what x,y, and z is. You'd think if they are calling in 5 scripts for Arley I would know what it's being used for. Oh well that's why I'm glad I work at a Pharmacy so they can tell me that info too.

We will be going home today and await our next visit and hope that no surprises happen between now and then. I just got a reminder phone call from her pediatrician to let us know of her follow up appointment tomorrow morning as well.

At some point today I have to pick up about 5-6 prescriptions I need for Arley to have in between all of our appointments. It's going to take a lot to keep all of this stuff straight. I'm still processing this whole thing and it's very overwhelming and I need to be even more vigilant and attentive because things can change at any moment from day to day.

I'm looking forward to school finishing within the next week though so I can focus more attention on Arley. In one of my classes though I'm going to receive an Incomplete because I have missed so much and he's going to give me summer work so I can still be on target for Internship in the fall. 

Also my summer class is online so hopefully that will be helpful with keeping me close to Arley however I've never had an online course so hopefully I don't become forgetful. So much is happening so fast my head is still spinning and trying to digest all of this information that I'm on overload.

Also thank you so much for all who continue to support Arley we very much appreciate all the get well cards and donations. I will update you all again soon thanks everyone xoxo

Chemotherapy Day 1

So we were asked to be here for 9am and my daughter has yet to receive her Chemo treatment almost 12 hours later. Geez this stuff really takes forever to get under way.

Earlier this afternoon they did a spinal tap on her so that they wouldn't have to do one later. More so as a precaution than anything else. 

They had to sedate her to do it but thankfully there were no issues once she came out of it like she has had previously. 

We are scheduled to be here for at least two days maybe longer depending on how she reacts to the treatment. We were given a schedule of her treatments too which will help so that I can hopefully go back to work soon. 

My two biggest worries right now are 1) how she will react to treatment and 2) how in the world will I study for my finals next week?! Thankfully for the most part my professors have been awesome but my Saturday class professor doesn't check his emails often so I have not a clue where I stand and missed a midterm two weeks ago. (The day my daughter had surgery)

Right now Arley is sleeping soundly. They gave her some Zofran (anti nausea medicine) to hopefully keep her from vomiting. I don't know how much longer it'll be until they give her the chemo she was supposed to have it between 7-8 and it's now almost 8:30.

While she sleeps I'm enjoying watching Criminal Minds repeats but am exhausted and wish I could sleep. I got the cot all ready but know as soon as I close my eyes I'll be woken up by them coming in to give her her dose. 

Sigh- it's going to be a long night I just know it. Also we received word today that it's a 99.9% chance that we do have to move to Boston and possibly a lot sooner than originally anticipated. I have to call them tomorrow to set up a consult for hopefully Friday. 

Well that's it for the update for now sorry there's not much else I can say but better than no update at all right? Talk soon xoxo

Preparing for tomorrow

I just finished packing our bag for our hospital stay. We have to be at CCMC for 9am to begin Arley's first chemo treatment. It truly makes me sad and extremely nervous. I cried a little just thinking about it. We should be getting her test results back tomorrow to see if the cancer has spread to anywhere else in her little body. I'm trying to remain positive and optimistic that it's just isolated in her neck, but I also need to prepare myself for the worst so that I am not caught completely off guard.

I hope Arley responds well to her treatments but the thoughts and visions that have overcome my mind lately are making me super queasy. I wish that while packing our bag that we were getting ready to take the road trip down south like originally intended in the next two weeks but unfortunately that has been put on hold indefinitely because obviously her health is way more important than anything else on the planet.

The past few days have been good at home although today she was super emotional. Every little thing set her into a crying/screaming fit. I think she senses that something bad is coming up because she wasn't like this over the weekend. 

Yesterday my parents bought her an iPad mini to have something occupy her while her treatments are going on. We have a Nabi tablet but it can only do so much so we needed a little upgrade and she loves it so far. It has everything that I was looking for and know that it's a solid investment.

Speaking of gifts, I have been overwhelmed by the love, support and generosity that has been shown to Arley recently as we battle our way through this next chapter in our lives. She has received a few care packages and it warms my heart and soul to know that there are people out there who love her as much as I do and want to offer her comfort to take her mind off everything. 

I honestly can't thank everyone enough for all that they have done between the care packages, get well cards, and donations to her GoFundMe account. Seriously, I never knew the impact my little girl has had on everyone until this all transpired. I firmly believe in the old saying "It takes a village," because that's exactly what has happened. So many friends, family and virtual strangers from the United States & Canada have come together to help ensure that Arley is doing well and comforted by everything that she is going through. 

Well, I must get myself ready for bed we have a long couple days ahead of us and I need as much beauty sleep as I can get in the next 8 hours because you know one can never truly sleep in a hospital your room becomes a literal revolving door and it's always hard for me to fall back to sleep.

Anyways I will update you all asap, until then, take care xoxo

Home

This morning we were released from the hospital for the weekend before being readmitted to the hospital for chemo on Tuesday. It felt so nice to get outside and to breathe in the fresh air that has been missing from our life for the past 8 days.

Arley has done really well. She has enjoyed playing with some gifts that were sent to her by our family and friends. She also has a new Minnie Mouse plush buddy that she received from a mommy that I know from a chat group and has been dragging that thing everywhere ever since she laid eyes on it.

And speaking of gifts received... remember how the other day I told you that I wanted to give back to the hospital and help restock their treasure chest because everyone had been so good to Arley in making her feel special? Well, today I went out shopping and bought enough to make at least 45 kids feel loved on different units of the hospital. 

While it may not look like a lot or in the grand scheme of things compare to all that the hospital has done so far, I felt very compelled to at least do something and this was all that I could think of as far as repaying them for their kindness and hospitality.

Anyway, I'm trying to decide what Arley and I should do tomorrow. I was thinking of taking her to another daffodil field but it's supposed to rain tomorrow so that idea is out so I'm left trying to figure out what all we should do. I would love to take her to one of the childrens museums that she would love or to a place I recently discovered that has a really nice play area, but I have to be extremely cautious now with exposing her to germs and such because with the port in her now she is more prone to sickness and infection and I don't want that.

I seriously have so much to learn in such a short amount of time. What one parent wouldn't think twice at or bat an eyelash to I have to be very vigilant especially being around other children. While I absolutely adore my nephews and they love Arley they are still at the stage where noses constantly run and germs are an abundance. Same with any of our playdate friends, I have to figure out how to manage her being around other kids so that she can still have the socialization, but not the sickness. Easier said than done right? Can't stick my kid in a bubble cause then hopefully this would've never happened. (Totally kidding)

If I can't figure out anything for us to do then I may just stay home and clean up a bit. I've hardly had the chance in recent weeks and I would really like to get some spring cleaning under my belt and donate a lot of stuff that we don't need anymore.

I will also have to call around on Monday to some mechanics because I think my brakes need to be fixed now ontop of everything else. When it rains it pours right? As if I have the time to be without my car for a few hours while it gets fixed, but it's something that needs to be done. Thankfully I just got paid on Friday from work so that I can get this taken care of before it becomes too much of a burden. 

Well I think that's it for this update for now. It feels good to be back in our own home and in our own bed. Arley and I took a really nice long two hour or so nap together and now we are having fun watching Mickey Mouse Clubhouse before we go back to sleep again. I'll update you all more tomorrow with what we decide to do. Talk soon, goodnight friends. xoxo

Sometimes you just have to say... (Explicit Language)

Fuck, Fuck, Fuckity Fuck. And then say it again, maybe three or four times before you start to feel better... or not.

Arleys doctor came in to talk to me this evening and honestly what he had to say was harder to grasp than telling me she has cancer. Basically our life for the next 42 weeks is going to be a huge roller coaster ride that's going to consist of a lot of twists, turns, ups, downs, quick stops and loop-de-loops and if that doesn't make you sick then the following will. (You've been warned)

Basically the next year is going to consist of blood transfusions, surgeries, chemo, radiation, and more. We will probably have to move to Boston for six weeks for the radiation because since she's only 2.5 they are worried this hospital may not be able to handle giving her radiation treatments because the nerves are so close to the tumor that it could cause some serious damage to her.

Some complications that more or less will arise are: trouble eating, drinking, chewing, swallowing. Difficulty walking, talking and jaw movement. Delays in her speech which will need therapy to correct and a plethora of other issues that I can't wrap my head around. Oh, and then of course those precious golden strawberry locks she has will eventually fall out before its completely gone.

Right now I feel alone and as if nobody has a fucking clue what I am going through. I understand that's probably dramatic BUT I literally don't know a single soul going through what I am right now. I am also fully aware that there are still families out there who have it way worse than us, but right now this is the worst possible news that could ever happen to my family.

I need to really take a step back for a minute though and acknowledge how put together I am. I'm surprised I haven't lost my shit yet. Like literally, I probably should've lost it like a thousand times by now. I need to give myself more credit but it really seems silly to do so and even more silly when others point it out. When they say how strong I am. Strong is all I know how to be in a situation like this. I can't crumble and fall apart piece by piece because that's not fair to Arley. I just have to keep holding my head up high and fight this fight with her for however long it takes us. We will become victorious and I won't settle for anything less.

A week later....

So today has been one week since we were admitted into the hospital and this whirlwind adventure (to say the least) started. Arley just finished the last test that they need in order to start putting the puzzle pieces together to this mystery. We have opted to participate in research to find answers as to why this happened to her, how come it grew so quick, why did it start bulging out of her neck etc. I feel that we are obligated personally to do this before if we can get these answers it will help me sleep better at night and if we can help another family going through this then it will all be worth it in the end.

And no, we weren't forced into participation either. Even though I agreed I have the option to forfeit it at any time no questions asked and no penalty received. But why wouldn't a parent want to participate? They already took her blood, her bone marrow, and the biopsy of the tumor in her neck and won't need to take anything else from her for the research so I mean sure, go on ahead and do it.
The benefits outweigh not participating so no arguments here.

Anyways... Arley is now eating dinner after having her Pet scan done. She did very very well in recovery this time around. I was very impressed with her. She was fussy but nearly as bad as the previous two times. Eventually she will get better with it I guess it just depends on the day. And perhaps the fact that she had a good nap today helped.

Also, I have decided that I want to give back to the Childrens hospital as well. Everyone has done so wonderfully with Arley and treated her so well that I want to do something. So, what I have decided is to help restock their toy chest with brand new, unused toys. I have three currently in Arleys closet that I was hanging on to for a rainy day and planning on going to ToysRUs and finding some more as well.

Will also purchase a gift card for her doctor so that he can buy some stuff that he knows is a need among the kids. I know the popular toys but maybe there's something specific that doesn't often get purchased for donation. It's the least I can do, I just feel obligated to help in some kind of way. I've always been like that though. Ever since Arley was 3 months old for her first Christmas we have donated stuff to children in need. Toys for Tots, the United Way, Police departments, whatever I hear about around the holidays I make sure to pick several and do it with her to teach her not only what the holiday is about "Giving to others," but also that there are a lot of people who are not as blessed as we have been lucky to be and they deserve to have a magical holiday just like we do.

Sorry, I'm rambling and I know it, but there's just something inside of me that says I have to show my gratitude because we are going to start becoming like a family. A medical family but still one none-the-less where we will know the names of every single staff member and develop a routine over time. Well, that's all I have for updates for now, going to get myself some dinner before our visitors show up. Will talk to you all again tomorrow. Take care xoxo

Bone Marrow & Port

Gosh, I think today was probably even worse than yesterday. Arley was scheduled to have her bone marrow and port put in today at 10am. So she wasn't allowed any liquids. Then we were told they would come get her for 11:15-11:30 for an 11:45 operation. Yeah that never happened. My daughter wasn't seen until like four hours after her originally scheduled operation time. So needless to say she was starving and thirsty all day again because of the mess up.

Even though she was NPO she was allowed to have liquids up to four hours before her scheduled operation, but with an original 10am op time and a 6am wake up call she wasn't allowed. So with proper planning she could've had something to tied her over, but it never happened.

Aside from these hiccups regarding her operation she did really well with the bone marrow and port being put in that I can somewhat overlook the fact that it took ages to get to that point. I'm so thankful that she's responding well to all of the various tests so far. (Oh! And I almost forgot she also had an EKG this morning and did absolutely wonderful there too)

Also, I had another issue with a staff member today. We had a student on the floor and I am all for people learning, I mean you have to start somewhere right? I had a student give me her first catheter when I was 6 months pregnant with Arley and suffering from kidney stones, so if I can trust someone to do something extremely painful to me on her own for the first time then I can clearly handle someone doing my daughters vitals.

However, this particular student must have been intimidated by the fact that my daughter doesn't like to be touched and likes to have you ask her where to take her temp and blood pressure. So once the student did that, she wrote down the vital numbers and then left...

Maybe you should reread that last line again.... did you catch what happened? She left without taking any of the stuff off my daughter and caused my daughter to scream bloody murder because the cuff kept going off before I realized that it was left on.

Unfortunately the student did this twice before I told my daughters nurse that the student or any student for that matter wasn't allowed back into my daughters room. How can you forget something so simple? I mean really. You put the items on, you let it do its job, you jot down your info and you take it off. So easy my 2.5 year old could literally do it.

What I have noticed is that when certain nurses, PCA's and techs are on things go really great because we become used to certain ones. When they have their days off  (which they totally deserve) it seems that the people who replace them are just not as good. Some have terrible bedside manner, some don't listen to anything you have to say and some are down right snotty. Thankfully though there is one doctor in particular that I have nicknamed the "enforcer" because whenever I appear to be aggravated they always send him in to try and defuse the situation. Thankfully I really like him and he usually is very helpful.

Arley is finally feeling better, ate her dinner and is finishing up a snack. I can't wait for her to go to bed for the night because she has had such a long hard day and we still have another test to go through tomorrow. It seems like each test brings a much harder recovery. She cries and screams for a good solid hour upon waking up from sedation that it's getting harder to keep a positive attitude and not show my own emotions because listening to your child have reactions that way to what has been going on around her is super hard. It literally hurts my heart to see her in such pain. Regardless though we have to keep positive and keep moving on because theres more tests around the corner.

For now I am off to go watch a movie (Felicity an American Girl) with my daughter and hope that sweet dreams soon come over her and she relaxes well for the remainder of the evening. Until next time friends. xoxo