First week back home

I can't get over how fast this last week has flown by! We have officially been back home in CT for a week now and it has been non-stop ever since. First with Arley's inpatient chemo treatment and then with getting everything together for her birthday party this weekend and not to mention anticipating the arrival of Auntie Lee Lee has left me almost exhausted.

I've hardly had a quiet moment to be able to come on here and update you all, but alas here I am.

Arley is doing well adjusting back into the home life and has been acting more independent again which is a huge relief. She still struggles daily with nausea and her walking, but together we are trying to get it all under control as best as we can. I am also still in the process of organizing her room into a special place to relax, but haven't done much with it since arriving home because her hospital visit and birthday planning have taken up all of my time.

I am so looking forward to getting her together with all her friends whom she hasn't seen in 8 weeks. Poor little thing has hardly had any socialization with kids her own age so I'm glad that her ending radiation treatment lined up with her birthday so we can kind of celebrate coming home with it as well.

Nearly everything is set for her party. I have done a few small craft projects (one more still to do tomorrow), grocery shopped for the main food & drink items that we don't need to buy fresh the day of, and organized the house as best as I could.

We have an action packed weekend and then are quite busy the following week, so updates may be few and far between, but I will most definitely post party photos for you all to enjoy as I have already been asked by several people to do so. (I promise!)

Did I mention that I can't wait for Auntie Lee Lee to arrive? She's actually my BFF from college and my sorority sister so you can only imagine the type of shenanigans we will get ourselves into while she's here, but the most tame things we will probably do is all you can eat sushi, movies, gossip and shopping. It's been 8 months since we have seen her and both Arley & I have been counting the days until she gets here. Two more days to go whoop whoop!

Well, that's all the updating I have right now. If we haven't been out shopping for the party then we have just been trying to relax as much as possible before all the excitement begins. Hope you all are doing well, I can't believe September is almost half way over! Bring in the fall weather, the pumpkins, the apples, Halloween, my birthday, etc. We are so ready for it! Until next time...

Radiation Completion

I am very happy to announce that Arley has successfully completed seven weeks worth of radiation treatment!

The journey in Boston did not come easily, but together she and I mastered every obstacle thrown our way and came out together victorious. I myself am so proud of her that I too am radiating, just with happiness.

Arley is without a doubt a rock star. She showed Boston that nothing was going to bring her down and even when she was feeling the most icky she would charge on with a huge smile plastered on her face.

Her spirit of life is one that I have never met before, especially with a young child. She handles everything with grace and shows the world just how truly magnificent she is.

Thankfully her side effects were very minimal as compared to others in her shoes. She never got mouth sores, never needed constant feedings through her tube, never lost her appetite or any of the long list of side effects they said she would encounter. I am so proud of myself as well that I stuck to my guns about not trying the feeding tube formula on her and held on with the hope that she would not need it, and she didn't.

I was not about to be pressured into "just try it" for any reason that I didn't believe was truly necessary. I can completely understand where the staff was coming from, however I know my kid better than anyone on this planet and I only wanted to cross certain bridges when we had to. If it made things a tad bit more difficult then together Arley and I would battle it. 

I was not about to try and introduce a new formula into her diet that could potentially have the possibility of causing a reaction in her system, especially when if she did, and it resulted in vomiting, I would be the one left to deal with it and thus putting both of us through that didn't seem like a wise choice so I am thankful that it never came to that and I never had to give her any.

There's no saying that she may never need any assistance the more into this journey we go, but I know her limits and when she is already enduring so much, adding another piece into the mix just didn't seem all that important.

Again, I totally understand people just doing "their job," but sometimes you need to back off especially when parents are already on an emotional roller coaster it's not wise to keep pushing and pushing. I wish people in the medical field or in general would realize that.

I do however want to give notice to the staff at the Proton Center. They did a really fabulous job taking care of Arley. Whether it was to entertain her while they were accessing her port, or just making everyday conversation, we truly felt cared for and it was nice getting to know everyone over the seven weeks we were there.

Our stay at Christopher's Haven was nice. The studio apartment was very spacious and most of the other parents and kids we met were very friendly. It would have been nice to have Arley interact with some of the kids more, but we are definite homebodies and the kids were either much younger than her or much older anyways so it didn't really matter one way or the other about making friends.

Christopher's Haven was also the driving force in forming our new friendship with the Buchholz family and learning about the Clay Buchholz Foundation. I am forever grateful for the opportunities Arley and I received from Clay & Lindsay to attend two games at Fenway and be apart of their Buchholz Bowl charity event.

The pair of them are the absolute sweetest and their daughters are so much fun. Arley and Coco really hit it off and I hope that the two of them get to remain friends in life...

Lastly, it is so nice to be home and in our own beds. It will take some getting used to  since we have been away for so long, but I am confident that we will be back to our old routine in no time. Arley has the next several days off from treatment and will resume her Chemo on Monday as inpatient. 

So needless to say we will be laying kind of low, unpacking, reorganizing and getting things ready for her 3rd birthday in 10 days! I seriously can not wait because she deserves to have the best possible birthday party that I can create. 

Well, it is way past my bedtime, so I am off to go snuggle my little lady and to drift off into dreamland.  Until next time friends...


Oh and before I go, here are some photos from the going away party & graduation.

September is: Childhood Cancer Awareness Month

Today is the 1st day of September and that means that it is also the start of Childhood Cancer Awareness Month. For the next 30 days and far beyond I will be joining the fight against childhood cancer and helping to promote organizations that I hold dear to my heart to help get the funding that is needed to help find a cure.

Here are some facts that you need to be made aware of...

Please take a moment and let that information sink in for a little bit. It's startling information isn't it?

Childhood Cancer research is one of the least funded out there, with so much attention and money going towards Breast Cancer. While that is a very worthy cause too, our children are our future and without the research to help find a cure, we are not helping to preserve that future.

I am not going to be one of those people who throws all sorts of information, facts, figures or statistics at you constantly, but I am going to be the voice of my 2.5 year old daughter and to let her know that I will never stop the fight in trying to find a cure or at the very least more answers as to how and why these diagnosis occur. 

You also don't have to make a monetary donation in order to help either. Just simply showing your support to the cause on social media helps to gain awareness and attention easily. Or, if you feel as though that's not enough you can join in one of the following:

• Boston Marathon Jimmy Fund Walk
• Organize a Shave-a-Thon (shave your head)
• Hold a read-a-thon, jump-a-thon, or a garage sale

The sky is the limit and nothing is out of reach with bringing attention and awareness to this worthy cause...

I have been asked several times before (with conducting interviews to help spread the word about Rhabdomyosarcoma), what I would tell other parents. 

Simply- don't take anything for granted. If something looks suspicious on your child, get it looked at by a medical professional. I know a lot of times parents don't want to bring their children in for something unnecessary, but I need to remind them that Arley was a happy, healthy, typical 2.5 year old toddler with no signs that cancer was invading her body and then all of a sudden a tumor reared it's ugly head on her neck and the rest is history.

It's better to be overly cautious than to not and realize that something that could've been handled better in the early stages versus later. You know how they say in school "No question is a stupid question?" Well I firmly believe that it can be implied to "No aliment, bump, bruise, mole, etc is stupid and shouldn't be looked at." You just NEVER know! We all like to think we are invincible especially when we are young, but the harsh reality is, we are not cats, we don't get nine lives. We only get one life and we need to cherish it and nurture it so that it grows old and wise, not be taken too soon.

So I ask you, the next time you run to Starbucks or Dunkin Donuts, think to yourself how much those few dollars you are spending on a quick pleasure could help to fund the life and pleasures of many young children around the world. They deserve a shot at life just as much as the next person.

Until next time my friends, please hashtag #TeamArleySage in any of your social media when bringing awareness to this worthy cause, so that I may know how far and wide this fight reaches. Thank you.

http://www.cancer.org/

http://www.massgeneral.org/

http://www.connecticutchildrens.org/

Donate to Team Arley Sage

Four months after diagnosis

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

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

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

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

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

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

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

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

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


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

Four Day Break

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

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

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

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

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

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

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

Halfway done with radiation

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

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

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

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

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

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

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

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

Updated GoFundMe Account

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

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

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

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

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