Upcoming Surgery

It's looking like Arley is going to be having surgery on Wednesday. I didn't expect for my curiosity discussion today to lead towards this, but when you know the inevitable is bound to happen it should be expected right?

Arley is scheduled to have a G-Tube put in. This is NOT to be confused with an NG Tube because an NG goes in through the nose and the G-Tube goes into the stomach. With the rapid weight loss I have been talking about for weeks, she has dropped 9-9.5% of her starting weight.

My fear is that she would need to have this done sometime next month while we are in Boston, however I am very apprehensive of trusting a brand new team of doctors to handle something like this when I already have a great team I trust at the ready here in Connecticut.

My dad was pretty much against it and my mom (the nurse) was for it and I've been sitting here playing monkey in the middle. It's all very six of one half dozen the other. (as both of my parents would say) A part of me feels that we should go ahead and take the preventive measure and the other part of me says lets ride this out, but I have been keeping close track of what happens with Arley every three weeks and if I can somehow control this then that's what I am going to do. Doesn't make me the least bit happy about it though.

I seriously just want to crawl under a rock and hide there. I have been over the "making big decisions" process since we started two months ago. I hate seeing my baby sick and I hate even more the decisions I have to make because of her sickness. I could really use a fairy godmother to show her face around here and 'bibbidi bobbidi boo' this Cancer shit elsewhere.

Sigh... I also really need to get my act together. July has reared her ugly little head and we leave for Boston's preliminary in just 7 short days. I bet they are going to fly faster than Pegasus and leave me scrambling to pack until the last minute. I probably should get on that now huh? Guess I'm thinking if I delay the process long enough that it won't happen for quite some time, we all know how dumb that is, but hey a girl's gotta do what a girl's gotta do!

Arley also has absolutely no idea about any of this. I want to try to make this fun, like an adventure, but who the hell wants their fun let alone adventure to consist of hospital visits, doctors, pain and whatever else is in store for us. I really am worried sick about the radiation aspect of all this. Her doctor said that she could have problems swallowing and it take a little toll on her so that's why we need to combat this stuff head on and go forth with the G-Tube insertion. 

The good thing about all this though is that Arley's doctor is not one to make decisions lightly. He drags his feet as much as possible and tries to find alternate courses to take until there are no more ideas left. For this very reason I have huge amounts of trust in him and his decisions. I have to, otherwise I will lose my shit completely and we can't be having any of that. He told me that if Arley was just receiving chemo and NO radiation he would try tweaking the chemo to try and help her combat the nausea and find other avenues, but the fact that radiation has to be a bitch and play along too puts us into quite a pickle.

Another good thing about all of this (or so I am told) is that if it comes to Arley not even needing it, it stays in for six weeks and then can be removed no harm no foul. It's all about making sure that while she's healthy to have the surgery now to prevent any complications should she have trouble eating/drinking, becoming dehydrated and THEN needing the surgery.

Ugh, all these decisions just seriously stress me out and make my stomach twists itself into a pretzel. Sometimes I lay awake at night thinking about what to expect in Boston and I am so overwhelmed that I feel like I'm suffocating. I know that the team out in Boston is very good and one of the best to have out there, but my anxiety and fear of the unknown just bothers the shit out of me, but I am determined to get through this with Arley not just because I have to, but because I want to prove to people that I can handle this. Together she and I can handle anything that comes our way. This is just another stepping stone to whacking the crap out of Cancer and telling it to see you never bye bye.

So in any case I will probably be spending my entire Tuesday either freaking out inside or at the very least trying to come up with something extremely fantastic to do with Arley. Hopefully the latter because I don't think my stomach can handle all the somersaults it does when I think too much on these things.

I will update you all again on Wednesday, wish my baby girl luck because my little trooper is going to need all the love, support, prayers, well wishes anything and everything you can manage to spare. Until next time friends....

PS- they also plan to check her vocal cords while she is in for surgery to check to see how it's looking. Her voice changes are unpredictable and they want to make sure nothing is happening to them. Lovely, just another thing to add to my mile long list of worries.

Discovering New England

So I posted a while back about wanting to Discover New England with Arley and take her to different places that we haven't been to before. 

Today I took her to Springfield and Deerfield Massachusetts. We started off with Dr. Seuss National Memorial Museum (Springfield). It's super cute, but takes literally five minutes to view. I would suggest either buying museum passes to the four museums that surround the garden OR to make different arrangements either before or after to ensure that your time isn't wasted. 

I was seriously disappointed to realize it only took five minutes to do, but was thankful that I was close by to the next places on our Discover New England list that it didn't really matter.

After we got ourselves back into the car I drove off towards Deerfield and headed straight for the Magic Wings Conservatory, you know the place I tried to take Arley to on Mothers Day when she got sick as soon as we arrived? Yeah there. At least though however she didn't get sick this time. Hooray!

It was quite crowded at Magic Wings but we still had a lot of fun. Arley was in such awe and amazement at seeing the butterflies flying all around her. She thought the entire experience was so cool and I agree. I would love to do it again, on a week day, perhaps in September for her birthday when my best friend is up visiting from South Carolina. I promised Lashonda I would take her up there and I will because theres so much to do/see for the day it'll be fun.

Next we went to the Yankee Candle store for a little lunch and shopping. Now I must tell you I am not by any means a candle fan. I worked at a candle store in college (it's now out of business) and they had some really yummy scents, but you still couldn't sell me on the idea of purchasing them and lighting them in my home back then. Anyways, there's just something about visiting the place that makes you want to buy up all the scents Yankee Candle has to offer. I, being a non-candle fan decided to just get a few scents to try out. I got one for summer, fall and winter then two additional scents for the bathroom.

Once we finished up there we headed on over to Historic Deerfield to explore some of the old fashioned houses that live in the district. It was so quiet over there I loved it and the feel of what life was like once upon a time way back when. I think I may have mentioned before how much I enjoy Massachusetts and the rich history that encompasses the state that I wish I could live in the olden days right smack dab in the middle of autumn when the colors outside are the richest I have ever seen. Guarantee you that I would be the happiest person ever.

I hope to try and take Arley to Sturbridge Village before we move to Boston because they have people who work in the village that resemble that time period and play the full on character role of someone who lived in the olden days. Dressed in the way one once lived, doing jobs that they used to do to survive and just having an ordinary yet simple life free of electronics. I want Arley to learn as much as she can and soak up all the information about that time period because it means a lot to me and we don't have any living relatives who could explain what it was like to live during those times so this would be the next best thing.

I think I have gotten ahead of myself here, so I will stop now and allowing you to enjoy some of my favorite photos from yesterday. Until next time friends...

Wishing

Is what I think about when I stare at this picture of Arley & Hollywood. That she is wishing with all of her might for something truly magical to happen for her.

This photo is so stunning and breathtaking that it literally rendered me speechless as soon as I saw it. How simply amazing and carefree is this? I can't wait to get a copy of it so that I can hang it up in Arleys room.

Speaking of which I am in the middle of switching her room around and making it horse themed so this will be a brilliant piece and perfect addition for wall art. I also hope that a friend of mine (whose husband is extremely talented) can put together a horse themed melted crayon piece as well for her room.

I have always had an artistic bone in my body however it was only skilled towards scrapbooking and creative writing. I wish I was more artistic because my mind definitely thinks it is, just can't translate it well haha. My nana was a very good painter and I wish I could have taken lessons from her before she passed so that I would have something special to teach Arley, but who knows maybe somehow she inherited that anyway.

Until next time...

Whimsical and Magical

Those two words come to mind when I look at the photograph that Christina posted for me last night from the photo shoot she did of Arley.

Arley has loved horses from a very young age, (It's always funny to say that because she's still young, but you get the idea) so I was thrilled beyond belief when Christina told me that we could make a dreamy photo shoot with real live horses for Arley to play with.

Can you guess how many horses with met yesterday? I'll give you a hint, it rhymes with free! Yes three horses! Cinnamon, Harriet, & Hollywood. These horses were so well mannered and very patient I was so pleased with the overall experience and will look into possibly hiring them for Arley's Sheriff Callie/Wild west themed birthday party in September. (I'm looking at you Hollywood!)

While Arley was very excited to see the horses it took her a while for her to warm up to them. She was apprehensive at first and a little scared, but allowing her to do what she wanted around them helped a lot. She fed them, pet them, rubbed their noses and held their rope. Eventually she warmed up enough to try sitting on them. 

Her favorite was the third horse, Hollywood. The two of them became such good friends and she did more with him than the other two horses, it warmed my heart seeing her interact with him and he was very gentle with her. I think I'm more excited to see those photos than anything else.

Also, at the end of the shoot when we were saying our goodbyes Arley gave Christina two hugs and several high fives which is something super special because she doesn't hug or high five just anyone! I am really looking forward to working with Christina again in the future, I was very pleased with the entire experience and making my daughters wish come true rates very highly in my book.

Hope you all enjoy the sneak peek as much as I do. Until next time...

                                   Arley with Cinnamon

Two months after diagnosis

Here we are two months after Arley's diagnosis of Rhabomysarcoma. 

In the last month we have had more in-patient hospitalizations than the month before. The reason for that is because Arley has gone on several hunger strikes after her routine visit which requires her to have extra stays in the hospital to monitor her weight loss and to ensure that she doesn't become dehydrated while on strike. (She has twice actually)

She also has had a change in her voice that comes and goes without rhyme or reason. Lately I have noticed it happen when she is eating it becomes hoarse and sometimes shortly after it changes to very delicate. We were told that this could be a side effect of her chemo, so we will just continue to monitor this closely as well to make sure it doesn't get worse.

We are still very humbled by all of the love and support received as well. So many people love her and send her Get Well cards in the mail almost daily that it's something fun for her to look forward to. I read each and every one to her. We were also very overwhelmed by all of the local community support we received with donations for her benefit and also when we received donations from people with whom we have never met, but heard about her story through the grapevine.

My friends still continue to amaze me all the time. They have rallied around us and ensure that we are taken care of often. Whether it be a rare moment out for me, or sending care packages to make Arley smile. My heart is overflowing with the amount of love that has been shown to us. I truly don't know what I would do without all of my friends whether they are friends I happen to know in real life, or friends that I have made over the years out in cyberspace.

Unfortunately though, I recently had to let a friendship dissolve because the choices this person made showed that their priorities in life didn't match up with mine and so it was best to let them go. I am satisfied with my decision as my focus is on the health & happiness of my child first and foremost and if someone chooses not to be supportive and understanding then there is not much else I can do, especially when given my situation I still went above and beyond to help this person and its not appreciated.

Anyway, I won't let one bad apple ruin or overshadow all of the truly wonderful people out there that are involved in our lives whether directly or indirectly. I seriously can't thank people enough and wish there was a word that could better express my appreciation and gratitude than that.

As June starts to wind down and July being right around the corner, our focus has started on our preparations for Boston. We have secured our home away from home which is fantastic and a huge weight lifted off my shoulders, so basically all I have left is to just pack up all the stuff we plan on bringing with us and getting that ready as soon as possible so that we can enjoy what little time we have left here in Connecticut uninterrupted. 

Tomorrow Arley has a surprise photo shoot that she knows absolutely nothing about. Fingers crossed that she has a good start to the day so that she can actually enjoy it. This photo shoot has been donated to us by a good word put in by my brothers employers. I can't wait to enjoy the moments with Arley and then to see the fabulous work the photographer does. From what I have seen so far of previous shoots she is simply amazing and I expect nothing short of brilliant from her because she is just THAT good! 

Also, something VERY exciting is in the works for Arley that she also has no idea about. I have to keep mum on what it is though just in case it doesn't pan out. (I don't see why it wouldn't though!) She is going to be so excited if all goes according to plan. May not happen until just before her 3rd birthday, but that's okay with me!

Hopefully I will have a sneak peek to share with you all tomorrow, but being a super fabulously talented photographer, she is also a mom of two young girls herself so it may not be right away, but I assure you as soon as I can share something with you my lovely readers I will do so immediately! Until next time friends.... xoxo

The Benefit

WOW! I am still completely amazed by all of the love, support, and generosity that has shined down upon Arley and my family. We had an incredible and unbelievable turnout today. Not only were there so many people, but so much food and the raffle prizes took up three long tables worth.

It was really great to see all of my hard work come together and to see that my friend Jenn's family did such an amazing job with cooking all the yummy delicious Italian food that we served. Everyone gobbled up all that we had and purchased so many raffle tickets too.

I was very happy to see that one of my old friends from high school won big. He took home one of two stainless steel grills and a few other prizes too. Also there were a lot of surprise visitors to the benefit that I have not seen in a while. Good to know that no matter how much time has passed, that when a hard time hits everyone just rallies around and helps one another.

There are so many people to thank too. I hope to have an entire page donated into the local paper, but if it doesn't go through I would like to thank the following companies and people for their donations... (as well as promote these establishments and get some foot traffic through their doors because they deserve it!)

The Stadium
Nardelli's
TD Homers
Harvest Bakery
Snip-Its
Cafe Bueno
The Super Natural
Garbanzo
Jumpin Jammin
Pottery Piazza
Spare Time
The Pavilion
The Oasis
Pagliacci's
J. Timothy's
Ice Cream Churn
Joey Garlics
True Value
Imagine Nation
Lowes
Home Depot
Price Chopper Berlin Turnpike
Flight Trampoline
Coco Key
Party Lite
Castle & Sons Motors

Thirty-One Gifts Independent Consultants Alison Colarusso & Jenn O'Leary
Tastefully Simple Consultant Kristina Baker
ADK Creations owner Donna Wiedemann
Melting Miltons owners Cameron & Diana Milton
Anchor & Clover Photography owner Kristopher St.Pierre


Honorable Mentions:
Peggy, Cheryl, Betsy, Paula and Diane

Here are a few photos of the benefit for you to enjoy. I wish I could say I took as many photos as I intended to, however it never happened because I was so busy entertaining and mingling with all of our quests that I didn't get a chance to do so.

You all will be happy to know that we raised a lot of money. This will definitely help put a significant dent into the funds needed for our relocation to Boston. Without all of you this wouldn't have been possible!

A very special thank you goes out to Pastor Paul and the Hillside Community Church for donating the gym space to us and for allowing us to utilize the space for several hours.

Lastly, I would like to personally thank all of my family & friends who rocked their yellow & gold colors today for Arley. Special thank you as well goes out to all my NOC 2.0 friends that I have made in the past year who lit up my entire Facebook newsfeed with yellow/gold too. That warmed my heart and soul more than any of you will ever know and I appreciate your support through this difficult time. Until next time friends.... xoxo

Bad Emergency Room Experience

I have noticed a pattern lately with Arley within the past month. Whenever she goes in for her hospital stay her appetite decreases significantly and she doesn't want to eat or drink for days. This morning when she woke up she was extremely pale and she threw up almost immediately. We tried giving her the dissolvable nausea tablet, but she immediately spat it out (as I figured she would) and that was the end of it.

She spent the entire day gagging on and off and still refused to eat or drink anything even when offering her favorite foods. I put a phone call into the clinic around 4:45pm and asked them what we should do. ER visit or wait it out and go to clinic in the morning. They said to bring her to the ER as the clinic would be closed in 15 minutes and then see what happens.

We have never been to the Emergency room with Arley at CCMC as a regular patient, we were only there when she was rushed from UConn back in April and it was a completely different experience. So this was our first time there and the experience did not sit very well with me at all.

Upon arriving we explained why we were there and since shes an Oncology patient she has priority above non-emergencies and we were seen right away. I explained to the person taking her vitals why we were there, then explained again to someone else. The whole time never suspected that they either didn't fully hear me or somehow had miscommunication going on.

The head chief doctor came in to talk to us briefly and again explained why we were there. Dehydration more than likely, no fever, vomited once in the morning, severe nausea all day yadda yadda.

It wasn't until the nurse came in did the domino effect start. She tried to access Arleys port and had an epic fail. I legit don't even know HOW she did it, but she put the needle in sideways! Sideways? YES! Freaking sideways! Not only that but she was under the impression that she would try to access Arley again and for whatever reason the second needle didn't prepare itself correctly. Uh, hold up, wait a minute! Back away from my kid!

I asked her very kindly to find someone else to do the access because I have a rule 'Get it right the first time or get someone else'. After she left to call for someone else, she came back in and said the doctor wanted Arley to have a catheter and was prepping fever medicine into the machine to be administered into her port. Um? (head tilt) what? Fever medicine? For what fever? I told like five people she didn't have a fever so who the hell gave the authorization that she needed fever medicine?

Oh dear... I can feel mama bear rolling around ferociously inside my body ready to let out the biggest roar anyone has ever heard in their life. I take a deep breath and ask for the head chief doctor. While I wait for him to arrive, Arley is asking for me to take her home. "I promise to take you home baby, but you have to drink your sippy cup first before I can do that." I say. "Okay mama." "You want your sippy?" "Yes!" and let me tell you that kid drank so quick that I think the trauma scared her to drink.

Upon the chief doctors arrival I explained everything that was happening and said that they had met my three strikes and we're out rule and that I was unhappy with the care we were supposedly receiving. He apologized profusely and said that he was unaware of the mistakes but he would get to the bottom of it immediately. He then said he would call in the nurse manager to come speak to me as well to lodge a complaint. 

The nurse manager was super nice and I liked him a lot. He listened to everything that happened, apologized for it and said he would rectify it immediately and have a discussion with the nurse about it too. He also said that they had been previously discussing (as a whole department) doing more training on port accessing because they are starting to see an increase in Hemoc patients. I said thats a very good idea because I only allow one try before I ask for someone else who is more experienced.

While the whole experience left me apprehensive of ever bringing Arley back to their emergency room, I was pleased with the head staffs quick response. I am also pleased to say that upon arriving back at home Arley decided she was ready to eat a little tiny dinner and drink some more juice. She also got her energy level back up and is feeling pretty good right now. I'm hoping that she remains good during the night and wakes up feeling much better too.

Anyways, I'm really exhausted right now so I'm going to go snuggle with my little lady and go to sleep. I'll talk to you all soon. Until next time friends...

Too much on my mind

Visiting the hospital for our inpatient stays are still not getting any easier. I dread them every three weeks. My stomach is always in knots whenever we arrive and the entire experience is always so exhausting.

The plus side to all of this I guess is the fact that Arley is getting a lot better at the clinic routine. She waltzes into the clinic and holds out her foot to receive her ID bracelet. Then goes to sit and stare at the fish tank until her name is called. Then she marches down the hall to the vitals room, hops up into the chair, sticks out her pointer finger for the heart rate monitor, and holds out her arm simultaneously for the blood pressure. After that hops off the chair and goes to have her weight/height checked. 

None of that seems to faze her in the slightest anymore which is fantastic because you used to be able to hear her screaming and crying a mile away. The only time she cries now is when they insert the needle into her port at the start of her stay and then again when they remove it once we are ready to go home.

She takes the chemo treatments like a champ too, the only issue is soon after for about 24-48 hours she doesn't eat or drink anything and whenever she attempts to she immediately pukes it all back up. Sigh. Did I mention this cancer stuff is exhausting?

They tried giving her a new anti-nausea medicine but I am kind of on the fence about it. It's a combination of anti-nausea and an appetite booster and both times she received it she ate/drank and no sooner did she finish was it back up again.

It's so hard to distinguish between what is working for her and what is causing her discomfort and not able to handle foods. It also causes her to lose weight because she legitimately doesn't tolerate anything and refuses it all even when you allow her to choose whatever she wants which they encourage. 

Her voice unfortunately has also begun to change a little bit. It goes from normal, to hoarse, to very soft/delicate almost dainty? They said they would keep an eye on that too because it could be a side effect to the main chemo she receives and may require a change if it gets any worse. Arley has also become more emotional lately. I'm unsure if it's toddler related, due to her not being able to communicate her feelings effectively or just something else altogether. 

I am just completely and utterly over this whole thing. It's so damn hard to watch your child be sick all the time. Seriously, this is no joke. I never know when Arley is going to get sick and throw up all over the place. I'm afraid of leaving the house sometimes because of this. It's hard to even plan things lately because every time I try to plan a playdate the day comes and shes super sick. 

I can't even work anymore. A job I love very dearly and enjoy because my coworkers help to make it fantastic is suffering. I can't concentrate because my mind is always and forever on Arley. It doesn't help that we are moving to Boston for treatment either. I just honestly don't know what to do with myself lately in regards to work but think it's best for everyone to put in my two weeks notice, at least for now and revisit work at a later date.

2014 was being so very good to me in the beginning. School and work were awesome and I had zero complaints, then this happened and it's such a huge wake up call. One that I hope none of you ever experience, but while it has been really hard (not going to sugar coat it) it has also been very rewarding. Parenting is like that anyways but this is something much more deeper and is hard to explain. I just need to keep trucking and focusing on small little goals to help keep me sane during all of this.

Her benefit is this weekend so that's the first little goal to focus on, then the next is getting her to Boston. After that the focus goes to planning her third birthday party once our stay at Boston is over and done with and starting back up with school. Then its on to pumpkin picking/Halloween and before you know it the holidays are upon us and a new year will be beginning. I just have to take everything in stride and one day at a time also, but looking forward to small monthly goals is going to help a lot too.

Well... I think I've gone off into a million different directions with this post so I think I will stop here for the evening and catch back up with you guys again later on in the week. Thanks for listening and take care everyone, until next time friends...

Where have we been?

I originally had a fun witty post written about five days ago that explained in full comic detail what Arley and I have been up to. Then life got the best of me and I deleted it without ever publishing it so unfortunately this will have to do.

After the blood transfusion Arley was doing really great. Her appetite came back and she started eating and drinking more. While it wasn't her usual amount prior to Cancer it was still better than nothing. On the day she was released from the hospital I was feeling very less than stellar and I got sick. Like really really sick.

I thought I had the stomach bug but turns out it was much worse than that. I can definitely relate to someone who suffers from Irritable Bowel Syndrome (IBS) because that's exactly how it felt. Like a cross between a volcano erupting inside of my belly and having a fast growing vampire baby in there if you ever read the Twilight Saga series then you know what I mean.

Anyway after suffering through that coupled with nausea, headaches and leg pain for five days I was finally feeling somewhat normal at the beginning of this week. I was able to go out into the world and get some more donations and make more ticket sales for Arley's upcoming benefit. I also convinced a company to send in an extra special donation to be raffled off to a child so I'm very excited about that.

A day or so later I surprised Arley with a trip to the strawberry patch. She loved it and had so much fun collecting as many strawberries as her little hands could. She was very proud to carry her little basket. I hope you enjoy some of the photos I took of that day.

Fast forward to now though, Friday the 13th isn't being so kind and lucky to me. While I did WIN tickets off the local radio station for a soccer game next week (Happy Fathers Day dad!), nothing slaps you back down to reality faster than a 3am wake up call because your daughter is sick and vomiting all over the bed. Sigh.... we were doing SO well too.

Other than this minor little set back today things are going really well. I'll be spending this weekend putting together the raffle baskets with my mother and finalizing everything needed for the benefit and preparing for Arleys hospital stay this week.


Very important side note to add: The reason for my demon spawn baby episode of sickness- the Hospital Food. I do not recommend eating hospital food for extended periods of time if you can help it. I won't tell you what the test results indicated just take my word for it. Until next time friends...

Blood Transfusion 1

So ever since last weeks hospital stay Arley has been under the weather. Hardly eating/drinking and very low energy.

On Monday she had clinic and still wasn't her usual normal self so I kept an eye on her and tried to get her to drink/eat when she wanted. When she received her daily shot she threw up an hour later.

Tuesday rolled around and still no eating/drinking with a continuation of vomiting has me starting to get worried. She again vomited within an hour of receiving her shot but it's hard to tell what all this is contributed to. She works herself up whenever she has to put the cream on and then to receive the shot so that's why it's so hard to decipher if it's due to the shot itself, her work up prior to getting said shot, because she's clearly dehydrated and not eating/drinking or a result of the chemo. Could even just be an odd combination of all of it put together.

I called the on-call doctor and he said to keep an eye on her, see if she would eat a Popsicle or drink some pedialyte and if I still felt like bringing her in I was welcome to do so. She had a few licks of her Popsicle before it melted on her and she fell asleep.

Fast forward to yesterday and she was so pale and listless that I immediately called the clinic to see about bringing her in. They said to bring her right away and back a bag in case we were admitted.

When we arrived she was weighed and she had lost another pound. For those keeping track that's two in less than a week. (One pound lost within two days) of the previous post. I'm worried that eventually she's going to require that damn feeding tube. If it gets her the nutrition she needs then fine I'll go along with it I just hate putting her into these situations all the time. How many procedures does one kid need?

Well nobody ever said this was going to be easy and that I would have to make and go along with decisions that I didn't necessarily want to. If it's going to make her feel better then I'm on board for it doesn't mean I have to like it though.

Anyway, after she was pumped with fluids they checked all of her levels and she was starting to drop dramatically. Her red cells needed to be at at least an 8.1 or higher and she was at a 7.3 no wonder she's felt so crappy the last several days. 

So it was decided that she needed to have a blood transfusion. I asked if it was possible for me to donate the blood to her since we are the same (as discussed a few blog entries ago) but they said no they don't use "known donors." Uh ok then.

She received only one bag of blood and then slept until about 35 minutes ago. She's refusing to eat breakfast but just drank 4oz of apple juice so we are at least moving in the right direction of getting something other than IV fluids into her.

For now I will end this entry and let you know how the rest of the day progresses once I have more information. I wanted to update everyone quickly with what's been going on with Arley since I posted a few things on Facebook.

Talk to you all soon with an update. Until then xoxo


ETA Update: Arley was released from the hospital with the promise that I would try to get her to eat and/or drink something and if not then i would have to bring her back. Her energy level had perked up a bit so that's why she was allowed to go back home. Once here she asked for some goldfish and some juice and drank about 5oz. About an hour or so went by and she asked for more fish. Works for me. While it may not be a meal it is by far a huge step in the right direction. Now its time to relax, and enjoy our weekend without any medical events and report back to clinic come Monday!

Expression

I have always been one that turns to creativity the most when I'm feeling less than stellar. Whether it be scrapbooking, poetry or even just blasting music and singing along to the songs. I much prefer using one of those as my outlet because it helps to close out whatever seems to be bothering me and put all of my energy and focus into artistry.

Admittedly, my mom says I can't carry a tune in a bucket, but I have always been broadway/grammy worthy to Arley since the day she was born, so I'll go with that. Anyway, I'm getting off track... ever since this all happened I have had various songs filling my head that seem to help me get my feelings out in healthy ways as opposed to some not so healthy and I figured I would share some of them with you.

Now I know that the way you hear a song could be very different from the way I hear it or even how the artist themselves wanted it to be heard, but sometimes songs just speak to you in volumes that you don't even understand. For instance have you ever heard a song and then watched the video to said song and it makes absolutely no sense and you wonder what the heck were they thinking? This is probably kind of like that, but regardless these songs mean a lot to me right now with the journey that I am currently fighting with Arley and this cancer. I have highlighted in bold the actual part of these songs that speak to me, yet have included the song in its entirety because it's still beautiful. Here goes...

Home

Phillip Phillips

Hold on, to me as we go
As we roll down this unfamiliar road
And although this wave (wave) is stringing us along
Just know you're not alone
Cause I'm gonna make this place your home

Settle down, it'll all be clear
Don't pay no mind to the demons
They fill you with fear
The trouble it might drag you down
You get lost, you can always be found

Just know you're not alone
Cause I'm gonna make this place your home

Ooo-oo-oo-oo-oo-oo-oo. Oo-oo-oo-oo [x2]
Aaa-aa-aa-aa-aa-aa-aa. Aa-aa-aa-aaaaaa [x4]

Settle down, it'll all be clear
Don't pay no mind to the demons
They fill you with fear
The trouble it might drag you down
If you get lost, you can always be found

Just know you're not alone
Cause I'm gonna make this place your home

Ooo-oo-oo-oo-oo-oo-oo. Ao-oo-oo-oo [x4]
Aaa-aa-aa-aa-aa-aa-aa. Aa-aa-aa-aaaaaa [x4]

Keep Holding On

Avril Lavigne

You're not alone, together we stand
I'll be by your side you know I'll take your hand
When it gets cold, and it feels like the end
There's no place to go you know I won't give in
(ah, ah) No I won't give in (ah, ah-ah)

Keep holding on
'Cause you know we'll make it through, we'll make it through
Just stay strong
'Cause you know I'm here for you, I'm here for you

There's nothing you can say (nothing you can say)
Nothing you can do (nothing you can do)
There's no other way when it comes to the truth so
Keep holding on
'Cause you know we'll make it through, we'll make it through

So far away, I wish you were here
Before it's too late this could all disappear
Before the doors close, and it comes to an end
With you by my side I will fight and defend
(ah, ah) I'll fight and defend (ah, ah-ah) Yeah, Yeah

Keep holding on
'Cause you know we'll make it through, we'll make it through
Just stay strong
'Cause you know I'm here for you, I'm here for you

There's nothing you can say (nothing you can say)
Nothing you can do (nothing you can do)
There's no other way when it comes to the truth so
Keep holding on
'Cause you know we'll make it through, we'll make it through

Hear me when I say when I say "I believe"
Nothing's gonna change nothing's gonna change destiny
Whatever's meant to be will work out perfectly
Yea-Eh, Yea-Eh, Yea-Eh, Yea-Eh-Ah-Ah (ah-ah, ah-ah)
La-Da-Da-Da, La-Da-Da-Da, La-Da-Da-Da-Da-Da-Da-Da-Da

Keep holding on
'Cause you know we'll make it through, we'll make it through
Just stay strong
'Cause you know I'm here for you, I'm here for you

There's nothing you can say (nothing you can say)
Nothing you can do (nothing you can do)
There's no other way when it comes to the truth so
Keep holding on
'Cause you know we'll make it through, we'll make it through

(ah-ah, ah-ah) Keep holding on
(ah-ah, ah-ah) Keep holding on
There's nothing you can say (nothing you can say)
Nothing you can do (nothing you can do)
There's no other way when it comes to the truth so
Keep holding on (keep holding on)
'Cause you know we'll make it through, we'll make it through

Christina Perri

Human

"Human"

I can hold my breath
I can bite my tongue
I can stay awake for days
If that's what you want
Be your number one

I can fake a smile
I can force a laugh
I can dance and play the part
If that's what you ask
Give you all I am

I can do it
I can do it
I can do it

But I'm only human
And I bleed when I fall down
I'm only human
And I crash and I break down
Your words in my head, knives in my heart
You build me up and then I fall apart
'Cause I'm only human

I can turn it on
Be a good machine
I can hold the weight of worlds
If that's what you need
Be your everything

I can do it
I can do it
I'll get through it

But I'm only human
And I bleed when I fall down
I'm only human
And I crash and I break down
Your words in my head, knives in my heart
You build me up and then I fall apart
'Cause I'm only human

I'm only human
I'm only human
Just a little human

I can take so much
'Til I've had enough

'Cause I'm only human
And I bleed when I fall down
I'm only human
And I crash and I break down
Your words in my head, knives in my heart
You build me up and then I fall apart
'Cause I'm only human

Lastly, a friend of mine decided to send me this video... and you may want to grab a box of kleenex before you watch it. Just saying....

Rough Time

It's only Monday and already I am hoping that the week would hurry itself up and be over and done with. Arley has had quite some difficulty since her last hospital stay. Hardly eating, lacks energy and hasn't really been her typical playful self.

Today at the clinic for her weekly visit we discovered that she had lost yet another pound. A pound to you may not seem like much, but when you're a cancer patient those pounds are huge. It also doesn't help that late last night she got sick a couple of times and again this morning before our visit.

I think she has grown a bit taller too although she's starting to thin out, I just worry if she keeps this up that she will need a feeding tube and that's a nightmare I'd rather not deal with.

Oh and get this, while she was receiving her chemo treatment she fell asleep in her stroller and slept for FOUR hours. Can you believe that? Four whole hours! I certainly couldn't believe it. Poor thing needed the rest though, her sleep patterns have been off for a week!

I truly wish I could make her feel better in between her treatments because I would love to be able to enjoy what little bit of summer activities we can now before moving up to Boston. I'm unsure of how much we will be able to do once she starts her chemo/radiation treatments so that's why I would like to enjoy what we can while we know we can do it. Also I am unsure of what all Boston has to offer although I know it does have a lot to offer us more than we get here.

Luckily though I have family/friends who are nearby that can probably help us out with finding activities to do. Thinking of taking a stroll along the Charles River, do a walking tour of the Freedom Trail, or even visit the Museum of Science and the Franklin Zoo. These are about the only fun adventures I can think of doing right now off the top of my head. You see, I was born in Massachusetts but haven't lived there since I was six years old and have only traveled to actual Boston a handful of times since then, usually with someone more versed in all it has to offer than I am so hey, it's a start right?

I would really love to take Arley to the cape to where my uncle's got married as well. I was 9 months pregnant with her the last time I was there and I just know she would love walking along the beach and splashing around in the water but summer is probably the worst idea for that as the traffic can be absolutely horrendous!

Moving on to another note we did get some good news today... we were approved for housing right near the hospital! While it is relatively cheap to stay, it's $30/day but when you times that by 7 days in a week and by the 6-7 weeks we will be staying that's almost $1500! Eek! On top of that I will have to probably pay additional for parking which will rack up my fee even more. For this very reason they don't recommend bringing a vehicle, but I don't see how I could possibly NOT do that. Guess I will just have to wait and see what the other alternatives are when we go for our preliminary screenings. 

Lastly for the updates, I decided to withdraw from my summer class. While it's only one and was an online course, I'm not sure of what our schedule will be like and what the internet situation will be once we move and I would rather not have the added stress of worrying about submitting my assignments on time. On the bright side I will be getting a partial refund back. They kept the fees but there's still a huge portion to get back which will be very helpful for our transition to Boston.

That's about it for right now. Tomorrow I want to clean out Arleys water table so she can go outside and play with it sometime this week because the weather is supposed to be somewhat nice and maybe even take her strawberry picking by weeks end. Ticket sales for her benefit have also been going really well so I'm pleased with how thats coming along as well. Until next time friends... xoxo