Three months after diagnosis

Wow... I can't believe it has been three months since Arleys diagnosis of Rhabdomyosarcoma.

It truly seems like a lifetime ago that we heard the news. 

Where we are now in the process is receiving radiation treatments in Boston in conjunction with her chemotherapy. She successfully completed her first weeks worth of radiation today. 

She had her G-Tube (feeding tube) placed yesterday but aside from administering some pain meds we haven't needed to use it for any feedings and I hope we never have to.

So far radiation has gone okay, but I have been warned that it's going to get difficult very soon. It's been a bit stressful lately because I've had to make a lot of new decisions and it's hard because you want to make the right one the first try versus trying multiple avenues. Whatever brings Arley the less amount of pain is what I want to do so long as it's the most beneficial too. 

Despite everything my daughter is never without a smile plastered so brightly on her face. She is a super star in every sense of the word. Rather than giving her strength she is giving it to me. I assure you if her shoes I probably wouldn't be taking it in strides like she is. I'm a tough cookie, but she's tougher and blows me away everyday with how strong she is.

I've said it before, but I'll say it again. Everybody loves her here. They all can't go over the fact that she's not even three yet and she's very polite, uses her manners and keeps a very upbeat attitude. I get reminded of it daily which makes me feel good that at least I've done a good job in raising her thus far. 

Next week we have some very special events to attend I just hope she does well and her numbers remain high. We go in-patient on Monday and this is usually when she doesn't feel so good afterwards so if you can keep her in your thoughts so that she gets to actually have some fun in the upcoming days. She deserves it more than anything.

With all that being said we are still trucking along on this long hard road and it's only going to get worse before it gets better. Don't get it twisted though, it's not me being pessimistic, it's a reality that we have been told again and again from the doctors and nurses. Just the way it is. 

I am the most positive and upbeat person, but even I understand that we need to go through the tough time to raise above to the good ones. This is no walk in the park, but together Team Arley Sage will get through it.

After being released from the hospital, eating and taking a two hour nap I took Arley for a walk along the Charles River. Here are a couple of photos for you to enjoy. Until next time friends... 

Copyright Team Arley Sage

Copyright Team Arley Sage

G-Tube surgery

Today Arley had the G-Tube placement and I was still apprehensive about the whole thing up until she was wheeled into the operating room.

I have battled myself internally trying to decide if it's the right thing to do. You see it's completely an elective surgery. She didn't HAVE to have it, but there's a very large possibility that she's going to need it the more into the radiation treatment she gets because the area is in her neck and jaw which will eventually make it hard to swallow, she will get burns and have some other complications as well so it's very likely she will need it but at the very least aside from being a precaution it's for her to receive medicine as well because she always pukes it back up if given to her orally. So I guess that's a plus.

However my apprehension wasn't put at ease when Arley woke up and cried and cried with tears streaming down her face telling me how much pain she was in. It took hours for her to settle down. She only slept for about an hour before she was back to being upset again.

Once transferred from recovery to the pediatric unit it was discovered that she had not peed in about six hours and was becoming dehydrated. They had to give her an extra bag of fluid and do a scan of her bladder to see if she was retaining any pee and she only showed 95cc's which was about 4oz.

Thankfully though the extra fluid helped and she almost finished an entire juice box. She never napped again but finally just crashed about an hour ago at 9:30. Poor kid.

She's still in pain, but they are quick to give her meds to help ease her and be comfortable which is fantastic because it's really hard to keep her calm when it wears off.

They only thing helping right now is bubbles and lots of them. She loves to try to blow the bubbles and is only mildly successful. I need to invest in a bubble blower machine or something she just can't get enough.

Also she is getting into books a lot more. My sister purchased one for her that's about butterflies (my favorite) and she loves it. They also make a ladybug one that's similar that I will have to try and buy for her at some point too because I think she would get a kick out of it as well.

This day has been such an emotional roller coaster for the both of us. It's so hard seeing her in pain and I would do anything to take it away if I could, but damn she is such a trooper. Everyone here loves her and it's hard not to. I don't say that because I'm her mama, but because she is just so full of life and happy and smiling despite everything she's going through.

Sometimes that makes it harder on me when she has to go to sleep for a procedure. She's so happy smiling laughing enjoying herself and then bam out like a light. I almost wish she was the crying type because I think that would be easier on me, but who the hell knows.

This shit isn't easy, I wouldn't wish this on anyone. Nobody wants to see their child go through this day in and day out . It's awful I'm not going to lie and sugar coat it believe me it's not in my nature. Battling myself constantly to make the right decisions for her keeps me up at night.

I had a good 2am cry session the other night just thinking about all of this. It was mainly triggered by the fact that someone messaged a family friend who posts all the time support for Arley some negative things about it and I just lost it. Who the fuck in their right mind would have anything negative to say about a bald blue eyed beauty who is in the fight of her life? Are people really that heartless and down on themselves that they have to resort to low life behavior?

They don't have balls enough to say it to my face which is fine. If they knew me they would know I wouldn't tolerate it and would go up one side of them and down the other before they knew what was happening. Anyway that's neither here nor there. Arley has a large team of people rallying around her constantly. She's touched so many lives already and together we will work hard to beat this.

I'm hoping that by next week she starts to feel a lot better because we have a lot of special events planned that are going to be fantastic. One of which is a star studded celebrity event!

Anyways Arley is sleeping as I mentioned before so I'm going to take this time to relax and catch up on my new show. Until next time friends.....

PS- Arley got a stuffed pig before her surgery that we named Petunia and she had an operation as well. G-Tube just like Arley. How cute is this?

Radiation and the New Girl

Yesterday was our first day of receiving radiation and chemotherapy at the same time.

Arley was immediately zeroed in on as the new girl. How did I know that? Perhaps it was the long stares she got while in the playroom or the fact that another parent dubbed her as such.

Either way, yes Arley is the new girl. She wears it proudly on her chest like a bullet proof vest. Come to find out after she went to sleep for her treatment that another girl only six years old was mesmerized that another child close to her age was bald and beautiful. She thought Arley was so cute.

Walking out of the radiation room my heart was heavy. Knowing Arley is in good hands is helpful but there's always that lingering fear that one of these days she's not going to wake up from treatment. The chances of that are probably somewhere between pigs flying and getting struck by lightning but hey I'm a mom it's my job.

As I walked back out the the waiting room I was told to pull up a chair at the puzzle table and there sat other parents who gave a silent acknowledgement that of been there done that first day anxiety. They were very welcoming and helped to put me at ease as much as a stranger can. 

We talked about what kind of diagnoses our kids have, where they are at in their treatment, what brought them here etc. It was kind of comforting in a way to finally be surrounded by people who "get it" who understand what you are going through and feeling, who can sympathize and empathize at the same time and really mean it. Who won't give you the "I'm sorry" look of pity and act as though they know what you're going through.

While our kids diagnoses are different as is our walks of life we all share a common understanding of dealing with doctors and nurses, medications, appetite changes, hospitals, living away from home essentially out of suitcases and know I mean really know what it's like to walk a mile in your shoes, but "it's not a sprint, its a marathon."

This is what we all as parents will worry about for the rest of our lives. Come to find out the six year old has a sarcoma almost similar to Arleys but not quite so the silence at times we shared and a quick nod of the head just goes to show you have to be there in order to know.

After waking up from her radiation treatment she had difficulty coming off her medicine. She was very irritable, cried, screamed and was all around a little grumpy. She wanted some milk but there is no Almond milk kept anywhere on property. I tried to persuade her to eat/drink what we had available to us but that was a nightmare.

Because of this we were late to chemotherapy but at least that went a little more breezy than the radiation. The rest of the day went awesome too. We moved into our suite/apartment as well and it's really nice. Came fully furnished and fully stocked with anything one would need for an apartment. 

Great for me because the money I spent thinking I would need x, y and z is going to return happily to my pocket. Right now as I write this Arley is receiving her radiation treatment and afterwards I'm hoping she wakes up better but if not I'm fully armed and equipped with stuff to help calm her a little quicker. It's a learning process.

Hoping to take her grocery shopping later today. I was planning on using PeaPod by Stop & Shop and after wasting an hour adding things to my cart there wasn't an option to pay by gift card. WTF? Oh well she's an easy shopping buddy anyway. Until next time friends I have a puzzle to assist on....

DreamNight Franklin Park Zoo

Arley and I have been in Boston since Saturday. We stopped quickly at the outlets and picked up some new fall clothes for her on sale and then went to the toy store.

After that we drove to my sisters house and went to have a bite to eat and walk around Brewster Gardens. While we were out walking on the trail we happened upon a mama duck and her five little chickadees. 

They were so adorable and Arley loved them. The mama duck and one of her babies even came up close to say hello. (Don't worry the mama duck wasn't vicious and never quacked or made any sounds, seemed like it was used to people)

Next we decided to go check-in to our hotel. Nothing super fancy, just an upscale chain hotel that's quite nice and relaxing with a comfy cozy king sized bed.

Once we checked into our room we changed into our bathing suits and spent an hour splashing around in the pool. Arley absolutely loved it and didn't want to get out. (Can't say I blame her though!)

She was so fearless and wanted me to let go of her several times. (Not yet my little fishy you're just learning how to swim!)

Then we changed back into our clothes and went down to the restaurant to have a quick bite to eat before we settled into our room, watched a couple movies and then went to bed. I would say our first day here was very successful!

Fast forward to Sunday....

My sister came up early to spend the whole day with us. We took Arley swimming again, but it was short lived due to a birthday party and the kids splashing Arley with water or doing cannon balls and soaking her. Not sure why they were on her side of the pool when the other side was completely empty, but we didn't' let that bother us much.

Arley took a quick nap and then it was time to dress her up and bring her to that super secret surprise I told you about weeks ago!

Our surprise was DreamNight at Franklin Park Zoo. If unfamiliar with DN it's where they close the park down early and allow sick and disabled children to come in with their friends and family for a special night just for them with NO crowds and free reign of the place.

Let me just tell you the experience was amazing! The admission was FREE, you had your choice of hamburger/hotdog, bag of chips and a bottle of water also FREE and had a bunch of FREE activities for the kids to enjoy. Any other aspect of the zoo where you had to pay something, ALL FREE! Priceless!

Arley was one of the first kids through the gate and she had her photo taken with a Stormtrooper then she was the first kid to  ride in one of those car rides and had the whole carousel to herself. She was a kid in a candy store having so much fun.

Then we walked around the zoo and checked out all of the animals. We saw lions, tigers, gorillas, giraffes, ostrich and more, but our absolute hands down favorite part was feeding the birds.

They literally swoop right in on you while you're holding the cup of bird feed and eat right out of the palm of your hand. And not just one bird, but at one point I had 5/6 birds on me!

One even decided to land on Arleys little bald head it was so cute! Seeing her face lit up everywhere we went was beyond any possible words I can share. Franklin Park Zoo is amazing and I will definitely try to bring her here again. Hands down one of the best experiences we have had in a while and I was so thankful that she was healthy enough to enjoy herself.

Photos of the event will have to be shared at a later time. I decided not to bring my laptop with me and since I can't watermark my photos they won't be uploaded until I can. Until next time though friends!

Boston Day 3 & 4 plus update

I realize that I have been completely slacking in the updating aspect of the blog in the last week since returning home from our preliminary visit to Boston so I have a little bit to fill you in on.

Day 3 and 4 for Arley was pretty good. She did well with the MRI and the CT-scan plus the making of her mask for radiation. It's quite cool actually and they let me take a photo of it so I could share it with you all here.

In the last week Arley has had quite a few ups and downs. She started throwing up a little bit again, but not nearly as bad as she has previously. This is the week where her body starts to wear down and her numbers plummet as well. Thus leading me to today where Arley was at the hospital for 10 hours to receive a blood transfusion. This was her second for anyone keeping track.

So far she has done really well with it and once we got home about an hour ago she had a small bite to eat and has been playing quietly ever since. Tomorrow I have a lot of errands to run, laundry to do and packing to begin as we are leaving for Boston early Saturday morning. I plan on taking her into some areas I used to live in, in Massachusetts before heading to our hotel to relax and unwind because I think it would be fun to show her where I lived for the first six years of my life. Then will probably take her to my favorite Chinese restaurant and the outlets. (All not necessarily in that order of course)

Then Sunday I get to see my sister again and spend some quality time with her before we bring Arley to a surprise/special event in the evening. I absolutely can not wait for this event. Arley is going to be so surprised and have a lot of fun. Can't wait to see the look on her face either.

I'm really glad that the time to leave for Boston has finally arrived. The anticipation and planning has been stressful enough so it's great that she and I finally get to tackle it together. 

There's a lot of stuff to look forward to while there and I hope to make the most of it for her so she has fun to focus on rather than machines, masks, and medical stuff. I'm really hoping to meet some friends that I have met in a chat group while we are there too. Would be great to have some adult conversation while our kids play together.

Anywho, sorry that this is rather short, I need to get going on writing out my list of stuff I need to pack and stuff I need to get while we are there. Can't believe that the time has finally come. Here's hoping that Connecticut does well without us and Boston does amazing things for us. Until next time friends...

Boston Day 1&2

Things in Boston have been going really well so far. The clinic team is very nice and the child life crew were wonderful in making Arley feel comfortable. The woman from child life played bubbles with Arley for like a good half hour and something I'm happy to report is that they distracted Arley enough to where she never flinched nor cried when they went to access her port. Amazing!

The main doctor in the clinic is also really nice and she will be the one overseeing Arley when she goes in for her weekly chemo treatments. She also informed me of some really good anti nausea medicines to try with Arley to hopefully combat her urge to vomit a lot when she gets all three chemos at once. So far so good knock on wood.

They have also decided to go ahead and have the G Tube surgery done here as opposed to in Connecticut because they would feel more comfortable doing it in between her radiation so that they can monitor her more closely because we will already be at the hospital for that.

We took a tour of the place we will be living at for the summer too and it reminds me of my old dorm days in college lol. It's very nice though and will do the trick just nicely. It has a queen size bed, twin bed, kitchen, living room and common play area for all of the kids and their parents. 

The building is also security protected so you don't have to worry so much about random people coming in. It's also literally a two minute walking distance from the back entrance to the hospital so it's super convenient to get to in between all her treatments. Priceless!

Hmm what else? The Hemoc floor at the hospital is really nice. As soon as you step off the elevator you feel like you're in a aquarium which is very inviting and from what I have seen riding the elevator a hundred times is that it's the only decorated floor. Kudos Boston Kudos!

They also have a really huge playroom that Arley has enjoyed twice so far which is awesome. It's going to be under renovation soon though to make it even more fun for the kids.

The staff has also been wonderful to us which I wouldn't expect them not to be. Had a couple slight hiccups though with a nurse who thought she knew better than me in regards to Arley and her medication. (Eye roll) She learned very quickly however though that when mama bear tells you something you better follow suit because I don't like seeing my baby girl sick for nothing.

Anyhow, moving right along, we talked to Arleys radiation doctor today and she too is very nice and super knowledgeable however she discussed with me all of the side effects and lifelong issues we will have to endure and it was really a hard pill to swallow.

Arley is going to have a long road ahead of her that's going to last well into her teen years and even adulthood. A series of complications that she will need physical therapy for among other things to say the least. I don't want to overwhelm anyone with the mile long list but it is what it is and she and I will tackle this together like we have been. We are Team Arley Sage right?!

Well I just wanted to give a very quick update and share a few photos I took around town, but I don't have my computer with me to mark them so will have to do so when we are home on Thursday. We haven't  explored too much yet but I have plenty of time to do so in the upcoming weeks. We have a big day ahead of us tomorrow so I want to try to relax and unwind. Until next time friends... Xoxo

I called off the surgery...for now....

Arley did NOT have her surgery the other day. I called it off, at least for now. There are a couple of reasons for this. The first being when we arrived at 12:15 for her pre-op appointment we were told that they were running an hour behind schedule. Okay, no big deal these kinds of things happen all of the time.

So it was quite a while before she was taken down to the OR to talk to the anesthesiologist. While there, we were now pushed back another hour behind. Then it turned into another hour and then another, by then it was looking like her 1:40 surgery time was going to be pushed back to 4pm.

I am NOT okay with that. Why? Because my child was NPOd (no food) past midnight, then no drink past 9:40am. Since Arley went to bed at 8 she missed her midnight cut off for food. (Shes a late night eater ever since being diagnosed with Cancer) and didn't wake up until 10:30am so she slept through and missed both her cut off for food/drink periods and it was coming up on 24 hours since she had anything in her system.

You can't do something like that to a two year old child, especially when they are now over tired (because she hasn't napped) and crying begging for something to eat and drink. At some point medical professionals should make a judgement call and realize enough is enough lets try to reschedule this before the parent themselves call it off.

It sucks when you're an adult and can't eat/drink for a procedure can you imagine what its like for a toddler? Seriously. A one hour behind schedule time I'm fine with, but when it turns into a three hour ordeal because of complications from the previous surgery a line needs to be drawn to prevent hunger and tiredness meltdowns.

Now don't get me wrong, I DO realize that complications can and do happen in the medical field and probably more often than anyone will admit to so I completely understand and am tolerable to that, however my two year old child is not and doesn't understand why she's being prepped for something and nothing is happening, so needless to say I called it off because I wasn't going to listen to them keep telling me "anytime now" and have my daughter upset and crying because she doesn't understand what's going on.

Anyway, yesterday we had to go to clinic for blood counts and I spoke to her doctor and we have decided to try to reschedule for an early morning surgery in between her first visit to Boston next week and our move towards the end of the month. That gives them a nine day time frame to work Arley into their schedule. 

I would be a lot more comfortable with this as opposed to an afternoon schedule because unless an emergency comes into the OR prior to her needing surgery, it should go off without a hitch. So for now we prepare for our trip to Boston and will focus all our energy on that and push our anxiety of a pending surgery off for another couple weeks. So until then friends, thank you for all of the love and support you have shown us, but most importantly to Arley.