Some people have asked how they can help Arley. A dear friend of mine created a GoFundMe account for anything financial that we will need help with once we are out of the hospital and starting treatments.
You can always say any prayers, send positive vibes or good thoughts our way as well. Some people have asked if they can send cards or anything else that they would like so if you want the address for that I am more than happy to provide it.
Being a single mom I have been out of work ever since this happened. I am also missing days from school, so this is going to be really tough on us for a while. I am very positive and optimistic though that everything will work itself out one way or the other. This is definitely our responsibility but if you are feeling giving and generous just know that we are forever grateful for anything and everything no matter how big or how small.
You can find the link to her GoFundMe account here:
http://l.facebook.com/l.php?u=http%3A%2F%2Fwww.gofundme.com%2FLoveForarley&h=wAQFRqZ3M&s=1
Thanks so much everyone! xoxo
Wednesday, April 30, 2014
CT Scan results are in...
Arley's doctor just left. He came to deliver some news in regards to Arley's CT scan. So far, the news is good. It's isolated right now just to her neck, which is mini victory worthy. Fist pump! However, we still have to get through the bone marrow tomorrow, the pet scan on Friday and then see how she responds to treatments on Monday.
I'm holding out hope that everything continues to be on the up and up and that its all just in her neck. I also found out that they only removed 50% of the tumor for now (chemo will handle the rest) because they didn't want to risk injury to the nerves in her face. If they had, then it would have effected her smile. Which isn't that big of a deal, she will still be beautiful regardless even when she starts to lose her golden locks.
Now while I am happy that this news is good and will continue to remain positive for all future outcomes I still have to be realistic that there is the chance that further testing could not be in her favor. I hope that I am proved wrong, but if you remember from previous postings originally cancer was low on the totem pole for surgery and yet she has it. I am only human.
Anyway, I had to share this update with you all immediately because I know you all have been waiting and asking, so this is truly my last update for the evening and I will officially see you guys tomorrow. Night all.
I'm holding out hope that everything continues to be on the up and up and that its all just in her neck. I also found out that they only removed 50% of the tumor for now (chemo will handle the rest) because they didn't want to risk injury to the nerves in her face. If they had, then it would have effected her smile. Which isn't that big of a deal, she will still be beautiful regardless even when she starts to lose her golden locks.
Now while I am happy that this news is good and will continue to remain positive for all future outcomes I still have to be realistic that there is the chance that further testing could not be in her favor. I hope that I am proved wrong, but if you remember from previous postings originally cancer was low on the totem pole for surgery and yet she has it. I am only human.
Anyway, I had to share this update with you all immediately because I know you all have been waiting and asking, so this is truly my last update for the evening and I will officially see you guys tomorrow. Night all.
Rough Day
Today Arley had a bone scan. While the scan itself went really well the recovery from being sedated has been less than stellar. She has had numerous meltdowns and has constantly been screaming and crying. She doesn't want you to talk to her, look at her, offer her anything to eat or drink and has been a completely different child.
Can I blame her? No. She's been going through a series of tests, pokes, prods etc for five days now. I feel really bad for her because let's face it, she's 2.5 and while she has really good communication skills, she still can't articulate all of her feelings and needs to us especially when she herself is going through constant emotions and states of being awake and asleep.
While she was getting the scan done I was able to leave the hospital for an hour and a half. I had promised Arley that I would get her an extra special surprise for being such a brave girl this past (almost) week. I went to the mall that is down the street from my house and picked her up some Tinkerbell fairy wings to go with her Rapunzel dress up accessory set that her auntie Cassy bought for her from JCPenney. Then I went to Claires and bought her a Princess Sofia necklace and some play jewelry as well for like 2 bucks because they were having a 10 for $10 sale on their clearance items.
Then from there I headed home to pick up some necessities and Target to pick up necessities I was out of. It felt good to get out for a bit but sucked that it's been raining hardcore all day. I also couldn't really enjoy the freedom of being outside because my mind was always on Arley and how she was doing throughout the whole procedure.
Today has honestly been a nightmare with her emotions being so out of control that I'm beginning to lose a bit of patience especially when once I finally calm her down a million people decide its time to come in and bug her. I understand that vitals need to be done, medicine needs to be changed, fevers need monitoring etc, but my poor child has not even had five minutes alone to breathe and process all that is happening to her which then in turn makes me frustrated because I am left to deal with the consequence of messing with her.
I feel as though I am at battle with doing what I know is right medically versus doing what is right as a mother. I would never deny Arley the treatment that she needs, but I feel as though they need to either do everything that they CAN do at once to do it grouped together or learn how to space things out enough so that she has enough time to relax before the next big thing.
Honestly all the previous days leading up to today have seemed like a cake walk because her moods have been pretty mellow with only a slight occasional hiccup verses prime meltdown mode. My daughter never has meltdowns. Yes she is a toddler and sometimes cries and has a fit which is all completely normal but she has NEVER had a meltdown... until today. It's as though today she finally opened up and unleashed all her emotions that she has felt for days. Guess she had the meltdown that I wish I could.
Hopefully though she gets some good solid sleep tonight because around 10 in the morning we are going to the OR for her bone marrow and to receive her port. Also here's hoping that recovery goes much smoother tomorrow than it did today. Especially since she will be totally under. Thanks everyone for the continued love and support. I'll be seeing you all tomorrow.
Can I blame her? No. She's been going through a series of tests, pokes, prods etc for five days now. I feel really bad for her because let's face it, she's 2.5 and while she has really good communication skills, she still can't articulate all of her feelings and needs to us especially when she herself is going through constant emotions and states of being awake and asleep.
While she was getting the scan done I was able to leave the hospital for an hour and a half. I had promised Arley that I would get her an extra special surprise for being such a brave girl this past (almost) week. I went to the mall that is down the street from my house and picked her up some Tinkerbell fairy wings to go with her Rapunzel dress up accessory set that her auntie Cassy bought for her from JCPenney. Then I went to Claires and bought her a Princess Sofia necklace and some play jewelry as well for like 2 bucks because they were having a 10 for $10 sale on their clearance items.
Then from there I headed home to pick up some necessities and Target to pick up necessities I was out of. It felt good to get out for a bit but sucked that it's been raining hardcore all day. I also couldn't really enjoy the freedom of being outside because my mind was always on Arley and how she was doing throughout the whole procedure.
Today has honestly been a nightmare with her emotions being so out of control that I'm beginning to lose a bit of patience especially when once I finally calm her down a million people decide its time to come in and bug her. I understand that vitals need to be done, medicine needs to be changed, fevers need monitoring etc, but my poor child has not even had five minutes alone to breathe and process all that is happening to her which then in turn makes me frustrated because I am left to deal with the consequence of messing with her.
I feel as though I am at battle with doing what I know is right medically versus doing what is right as a mother. I would never deny Arley the treatment that she needs, but I feel as though they need to either do everything that they CAN do at once to do it grouped together or learn how to space things out enough so that she has enough time to relax before the next big thing.
Honestly all the previous days leading up to today have seemed like a cake walk because her moods have been pretty mellow with only a slight occasional hiccup verses prime meltdown mode. My daughter never has meltdowns. Yes she is a toddler and sometimes cries and has a fit which is all completely normal but she has NEVER had a meltdown... until today. It's as though today she finally opened up and unleashed all her emotions that she has felt for days. Guess she had the meltdown that I wish I could.
Hopefully though she gets some good solid sleep tonight because around 10 in the morning we are going to the OR for her bone marrow and to receive her port. Also here's hoping that recovery goes much smoother tomorrow than it did today. Especially since she will be totally under. Thanks everyone for the continued love and support. I'll be seeing you all tomorrow.
Mama Bear Mode
Today Arley is scheduled to have a CT scan done. She will also meet her aunt Diane for the first time ever too. I'm really excited for my sister to visit. I haven't seen her since I was pregnant with Arley so it's been a long time coming.
So we have had a few hiccups today and I think my Facebook status will explain it much more eloquently than I could do right now at 7am as I write this...
Five hours later the CT scan is finally done. Arley did wonderful and was a trooper. CT scans do NOT take that long to do however two emergencies came up (other patients) and then there was a hiccup. This morning the nurses were supposed to give Arley a certain size line for her sedation. I heard the message relayed but it was never carried out so several times today my poor battered and bruised (...from all the pokes and prods) little girl was running out of places for IVs to be put in her to help sedate her for the procedure. I called for her doctor (big boss man) to assist in getting this done for her. He's also going to help me file a complaint against the two people who didn't carry out their original job. Arley was put through a lot of unnecessary "trauma" today because of it. Mama bear mode had to come out in order for things to be done right. She has not eaten in 24 hrs or had anything to drink so thankfully her doctor found people who knew what they were doing to get the job done. I'm in recovery waiting for her to wake up and take her back to her room to snuggle. What was supposed to be something easy turned out to be a huge deal because someone didn't do their job right this morning. I am completely exhausted as is Arley and am thankful at least it wasn't something major that went wrong and that her doctor is a huge advocate for her. Tomorrow is another huge day so we have to prepare for that now. Thanks for checking up everyone!
National Super Hero Day
Did you know that such a day exists? I sure didn't, but I quickly learned when I woke up and saw a bright red bag with the word WHAM! printed on it. I peeked inside and saw a pink cape, a super hero activity and a few other crafts. Then when I looked outside her bedroom window I noticed that the nurses station had be changed into Gotham City. So cool!!
If I can be honest here, there is truly nothing in this world that brought me to tears faster than when Batman came in to talk to my daughter and asked if she was a super hero. "Are you bat girl?" She may not be Batgirl but she is my little super lady. Here are some photos of the day that I am sure can explain themselves along with a couple videos as well. My little girl is a true rock star!
©2014 J. Fiereck Photography, LLC
http://foxct.com/2014/04/28/superheroes-drop-in-to-connecticut-childrens-medical-center/
Full news broadcast
http://foxct.com/2014/04/28/superheroes-day-at-connecticut-childrens-medical-center/
Online condensed version
If I can be honest here, there is truly nothing in this world that brought me to tears faster than when Batman came in to talk to my daughter and asked if she was a super hero. "Are you bat girl?" She may not be Batgirl but she is my little super lady. Here are some photos of the day that I am sure can explain themselves along with a couple videos as well. My little girl is a true rock star!
©2014 J. Fiereck Photography, LLC
http://foxct.com/2014/04/28/superheroes-drop-in-to-connecticut-childrens-medical-center/
Full news broadcast
http://foxct.com/2014/04/28/superheroes-day-at-connecticut-childrens-medical-center/
Online condensed version
Tuesday, April 29, 2014
Updates
April 27th...
Morning update: Arley had a rough night for a while until they gave her a slushie to soothe her throat. She fell asleep immediately after and slept through the night. We have a very long road ahead of us and await report from Pathology tomorrow to know what lies ahead of us for her care. Today is more of keeping her calm and comfortable and putting her on a liquid diet. Please continue to share your love and support of her because I tell her all about it. I'm trying to remain positive and strong for her and am doing my absolute best.
Morning update: Arley had a rough night for a while until they gave her a slushie to soothe her throat. She fell asleep immediately after and slept through the night. We have a very long road ahead of us and await report from Pathology tomorrow to know what lies ahead of us for her care. Today is more of keeping her calm and comfortable and putting her on a liquid diet. Please continue to share your love and support of her because I tell her all about it. I'm trying to remain positive and strong for her and am doing my absolute best.
Afternoon update: Arley has been struggling quite a bit this afternoon. Has had fevers off and on, a lot of swelling on the side of her face (normal) and an unfortunate itchy reaction to an antibiotic (the strongest she can have). Right now she's sleeping (due to Benadryl) so hopefully it'll help the itch go away. Awaiting the arrival of her uncle and hoping the evening goes much more smooth.
Night time update on Arley: as the early evening began she decided she wanted to be Miss Independent and get out of bed. With permission she was unhooked from her machines and was allowed out of bed. She looked like Bambi walking for the first time. Had to get used to her sea legs (lol) she went for a ride around the unit (several times), went into the play room (lasted only a few minutes) and the...n headed back to her room. She ate all of her dinner and took a really long nap. Right now her personality has come out in full force and she's singing me tons of songs. Huge improvement from eariler today. Her pediatrician also visited us today and took me outside for fresh air. We discussed a lot of what's going on with Arley and what to expect in the next couple of days. While she had a good evening there's still a very long road ahead of us.
Surgery
Today is the day (April 26th) that Arley is going in for surgery. I am completely beside myself. I am hoping for the best but of course preparing myself for the worst. The surgeons think that its either a cyst or an infection that has bled out. Cancer has been thrown out there but it's the lowest possibility on the totem pole. They are however very optimistic that it's not the big "C," but of course one can only stop their mind from wandering to that diagnoses for so long.
They told me that I wouldn't be able to go past the operating room doors which I understood, however I expressed that they needed to give her the sedation in the hallway before I would even allow them to wheel her away. I didn't feel comfortable allowing her semi-conscious to be sent into a room she was unfamiliar with a group of strangers surrounding her. Thankfully they adhered to my apprehensive and sedated her enough to make her loopy and not aware of what was going on.
I gave her a kiss, promised to see her when she woke up and watched as she was wheeled away and into the operating room. Tears immediately filled my eyes and rolled down my cheeks. I realize that I have to keep it together and remain strong but a person can only be pushed to the hardest of limits before there just isn't much they can do anymore.
I am literally shaking like a leaf and missing my baby girl. I'm trying to be strong for her but this is so damn hard. I don't know how long she will be in surgery for and I'm anxious about the outcome. Thankfully I have tons of family and friends near and far who are texting me, sending me PM's or comments on Facebook to keep me company and pass the time.
I have thought about running out the doors of the hospital and to keep on running until I can't anymore. That won't solve anything and I know it, but I feel like the walls are just starting to cave in on me. I literally just started back up in school at the end of January, started a new job a month ago and now I'm left scratching my head as to how a few days ago my daughter was energetic and bubbly and now she's lying on an operating table to get this mass out of her neck. It's unreal, it's unfair it's a million and one things that I don't care to describe. I need to keep my shit together if for nobody else but me and her I will do it. I have to. I'm a single mom and doing this all on my own.
So my daughter has been in surgery for an hour and a half. I don't know how much longer she has but I need to find a way to occupy myself in the meantime. This isn't going to be an easy task as my mind keeps wandering and playing tricks on my heart and emotions. I have a feeling in my gut that says the worst possible outcome is going to happen to my sweet baby girl.
A few more minutes have passed and I noticed the surgeon is on his way to see me. He comes into the room and explains that Arley has done really well in the surgery. Immediate fist pump happens in my head as I listen intently as he continues. "We have found a cause for concern. It appears as though there is a malignant in the mass that we have removed from Arley's neck."
WAIT! WHAT? Hold on, rewind here.... you mean to tell me that while she did well in surgery that she still has cancer? Un-fucking-believable. I lose it right then and there. I put my head in my hands as the tears pool down my face and keep on repeating "shit shit shit." I don't know why shit came out of my mouth or what all I meant to express behind it but there you have it, my reaction to my daughters diagnoses.
After about another 45 minutes or so the other surgeon comes into my room to talk to me and discuss the options of what lies ahead of Arley. My mind is spinning my heart is racing and all I can think of is seeing my baby girl and holding her tight.
Pretty soon after though I am able to go to the recovery room and visit with her. She looks so peaceful resting after her big event. I cant wait to see her precious baby blues stare up at me and to hear her call my name. I will update again soon though I am exhausted and just want to be in the moment with my daughter.
They told me that I wouldn't be able to go past the operating room doors which I understood, however I expressed that they needed to give her the sedation in the hallway before I would even allow them to wheel her away. I didn't feel comfortable allowing her semi-conscious to be sent into a room she was unfamiliar with a group of strangers surrounding her. Thankfully they adhered to my apprehensive and sedated her enough to make her loopy and not aware of what was going on.
I gave her a kiss, promised to see her when she woke up and watched as she was wheeled away and into the operating room. Tears immediately filled my eyes and rolled down my cheeks. I realize that I have to keep it together and remain strong but a person can only be pushed to the hardest of limits before there just isn't much they can do anymore.
I am literally shaking like a leaf and missing my baby girl. I'm trying to be strong for her but this is so damn hard. I don't know how long she will be in surgery for and I'm anxious about the outcome. Thankfully I have tons of family and friends near and far who are texting me, sending me PM's or comments on Facebook to keep me company and pass the time.
I have thought about running out the doors of the hospital and to keep on running until I can't anymore. That won't solve anything and I know it, but I feel like the walls are just starting to cave in on me. I literally just started back up in school at the end of January, started a new job a month ago and now I'm left scratching my head as to how a few days ago my daughter was energetic and bubbly and now she's lying on an operating table to get this mass out of her neck. It's unreal, it's unfair it's a million and one things that I don't care to describe. I need to keep my shit together if for nobody else but me and her I will do it. I have to. I'm a single mom and doing this all on my own.
So my daughter has been in surgery for an hour and a half. I don't know how much longer she has but I need to find a way to occupy myself in the meantime. This isn't going to be an easy task as my mind keeps wandering and playing tricks on my heart and emotions. I have a feeling in my gut that says the worst possible outcome is going to happen to my sweet baby girl.
A few more minutes have passed and I noticed the surgeon is on his way to see me. He comes into the room and explains that Arley has done really well in the surgery. Immediate fist pump happens in my head as I listen intently as he continues. "We have found a cause for concern. It appears as though there is a malignant in the mass that we have removed from Arley's neck."
WAIT! WHAT? Hold on, rewind here.... you mean to tell me that while she did well in surgery that she still has cancer? Un-fucking-believable. I lose it right then and there. I put my head in my hands as the tears pool down my face and keep on repeating "shit shit shit." I don't know why shit came out of my mouth or what all I meant to express behind it but there you have it, my reaction to my daughters diagnoses.
After about another 45 minutes or so the other surgeon comes into my room to talk to me and discuss the options of what lies ahead of Arley. My mind is spinning my heart is racing and all I can think of is seeing my baby girl and holding her tight.
Pretty soon after though I am able to go to the recovery room and visit with her. She looks so peaceful resting after her big event. I cant wait to see her precious baby blues stare up at me and to hear her call my name. I will update again soon though I am exhausted and just want to be in the moment with my daughter.
Mass Discovery
This literally came completely out of no where. There was truly nothing off about my daughter at all. The other day I left training from my job and headed home. I picked my daughter up from my parents and drove to my job site to hand in a payroll slip from training. Upon talking to my boss (Pharmacist) I noticed out of the corner of my eye that my daughter had a huge golf ball sized mass protruding out of her neck. The Pharmacist told me that I should bring her to the nearest Emergency Room and get it checked out immediately.
I put my daughter back in the car and headed straight for the emergency room at UConn Medical Center. Once there my daughter was still acting normal and completely unaware of something sticking out of her neck. I checked her into the ER department and awaited to be seen. We chose a seat to sit down and she started running around a bit and climbing on other chairs. (We were the only ones there so I let her play)
Once we were called back to check her vitals everyone was completely perplexed as to how something like this could manifest itself within about a half hours time. They decided that she needed to have an ultrasound done to check on what was inside the mass and then proceed from there however they may need to.
During the ultrasound three doctors came in to the room to watch the ultrasound and see if they noticed anything. After a while of doing different scan views they decided it was possible that she had a hematoma. (Hematoma- collection of blood outside the blood vessels, usually in liquid form within the tissue) They told me that they were not equipped to handle something like this and she would have to be rushed to Connecticut Children's right away. Before they could do that however they needed to sedate my daughter for transporting and put a breathing tube in so that she didn't potentially stop breathing due to the mass growing before all our eyes.
Within a few short minutes we were immediately surrounded by a dozen people. Doctors, Nurses, Techs, an Anesthesiologist you name it they were in our room. I had to ask that some people who were not immediately needed in assistance to back off because I was becoming claustrophobic and on the verge of a panic attack all while sitting on a stretcher with my daughter while they started IVs and medicine to make her loopy and safe for transport.
Let me stop just for a second and tell you that while I was emotional has some of this was transpiring because I didn't understand all that was happening, there was nothing to prepare me for having my daughter fighting tooth and nail with everyone trying to get the IV in her to going limp and weighing like a ton of bricks.
That was when I truly lost it and was very inconsolable. As I watched helplessly as they put the breathing tube down her throat I thought how about this would be the last time I would see my baby and that she may not come out of this.
The ambulance came and whisked us away to Childrens Medical. Upon arriving she was immediately taken into a room where a dozen more doctors, nurses, tech's, etc were waiting for her.
Everything after is a complete blur. I can hardly remember the details and a lot of it is still fuzzy. Arley spent the night in the PICU and were told that she would need surgery the following morning. I've been trying to wrap my head around all of this but I simply just can't do it. I've been an emotional wreck all day hopefully tomorrow is better and brighter.
I put my daughter back in the car and headed straight for the emergency room at UConn Medical Center. Once there my daughter was still acting normal and completely unaware of something sticking out of her neck. I checked her into the ER department and awaited to be seen. We chose a seat to sit down and she started running around a bit and climbing on other chairs. (We were the only ones there so I let her play)
Once we were called back to check her vitals everyone was completely perplexed as to how something like this could manifest itself within about a half hours time. They decided that she needed to have an ultrasound done to check on what was inside the mass and then proceed from there however they may need to.
During the ultrasound three doctors came in to the room to watch the ultrasound and see if they noticed anything. After a while of doing different scan views they decided it was possible that she had a hematoma. (Hematoma- collection of blood outside the blood vessels, usually in liquid form within the tissue) They told me that they were not equipped to handle something like this and she would have to be rushed to Connecticut Children's right away. Before they could do that however they needed to sedate my daughter for transporting and put a breathing tube in so that she didn't potentially stop breathing due to the mass growing before all our eyes.
Within a few short minutes we were immediately surrounded by a dozen people. Doctors, Nurses, Techs, an Anesthesiologist you name it they were in our room. I had to ask that some people who were not immediately needed in assistance to back off because I was becoming claustrophobic and on the verge of a panic attack all while sitting on a stretcher with my daughter while they started IVs and medicine to make her loopy and safe for transport.
Let me stop just for a second and tell you that while I was emotional has some of this was transpiring because I didn't understand all that was happening, there was nothing to prepare me for having my daughter fighting tooth and nail with everyone trying to get the IV in her to going limp and weighing like a ton of bricks.
That was when I truly lost it and was very inconsolable. As I watched helplessly as they put the breathing tube down her throat I thought how about this would be the last time I would see my baby and that she may not come out of this.
The ambulance came and whisked us away to Childrens Medical. Upon arriving she was immediately taken into a room where a dozen more doctors, nurses, tech's, etc were waiting for her.
Everything after is a complete blur. I can hardly remember the details and a lot of it is still fuzzy. Arley spent the night in the PICU and were told that she would need surgery the following morning. I've been trying to wrap my head around all of this but I simply just can't do it. I've been an emotional wreck all day hopefully tomorrow is better and brighter.
Meet Arley
This is my daughter, Arley Sage.
She is your typical happy go lucky 2.5 year old child. She loves to sing, dance, watch Mickey Mouse Club House or Little Einsteins and spend time going on play dates with her closest friends. Nothing seems out of the ordinary when you look at her and for that I am extremely thankful however what you don't know is that my sweet little girl was recently diagnosed with cancer. So recent that it has literally been only four days since we heard the news.
This blog is going to be mainly for our family and friends that live all over the world to keep tabs on her, her prognosis and everything in between. I will try my best to update it everyday to keep all in the loop from her day to day treatments. Also, maybe this will help someone else whose child or loved one is going through cancer themselves. Together we can all beat this. #TeamArleySage
This blog is going to be mainly for our family and friends that live all over the world to keep tabs on her, her prognosis and everything in between. I will try my best to update it everyday to keep all in the loop from her day to day treatments. Also, maybe this will help someone else whose child or loved one is going through cancer themselves. Together we can all beat this. #TeamArleySage
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