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Wednesday, August 23, 2017

Days 4 & 5

*I just need to take a moment to say thank you to everyone who has reached out to lend strength, support and prayers as well as offers to connect us to those who have walked this path before.  We are totally overwhelmed (in a good way!) and just trying to sort through all the information given to us by the doctors/ nurses as well as the foundations, families and support systems.  It is so beyond comforting to know we are not alone in this fight and have so many resources and people who are able to help us know what to expect.  As I said, I don't know it yet, but I know that God chose Addie specifically for this fight and I trust that we will all one day know exactly why, and be grateful for all of this - even the bad and scary stuff.

8/21 - Today has been Addie's best one yet!  She did have a dose of Chemo through her IV and handled it flawlessly and showed no side effects.  She seemed "herself" all day today and it was so nice to see. She did complain that her throat was hurting periodically throughout the day and the doctor said it could be either a side effect of the steroids she is on (they can cause mouth sores) or possibly a small infection given the fact that she essentially has no immune system at the moment. They gave her Tylenol and that seemed to help.  She didn't want to be in bed much either with the exception of when she took a 2 hour nap in the late afternoon.  It was so nice to see her resting without any pain.  At night she became a ravenous little beast!  She requested chicken fingers for dinner and finished all of them (if you know Addie, you know its rare for her to ever finish her meal, lol).  She then requested cucumbers with salt, more chicken fingers and finished off her cravings with a bagel!  It was a relief to see her with such an appetite since that hasn't been the case since we got here.



8/22 - Today was a hard day on Addie - we aren't sure if it is because of the Chemo yesterday or the fact that her WBC (white blood cells) are almost at 0 giving her body the inability to fight infection. She basically slept the whole day and barely ate or drank anything - quite the opposite from the night before. She was up for a short time and painted a picture that we hung on her wall.  In the evening she started complaining that her head hurt so we checked her temperature and it was at 100.3 - the highest its been since we got to the hospital.  I of course panicked but the nurses assured me that fevers are to be expected and they have protocols in place on how to handle them.  The good news is that my strong little girl was able to fight it off on her own without medication and within 2 hours her temperature went back down to 98.7.  At around 9:00pm Dan ran out to get Starbucks and Addie requested a S'mores frappuccino (happy to see she still loves these!).  He came back and she told us that they made it wrong. LOL.  She explained how it was supposed to have graham crackers on the top and chocolate on the bottom (this one looked like it was all chocolate). So then she said, "I think I'll try a Strawberry one instead".  I told her they were probably closed now, but Dan of course flew back out and drove back to Starbucks to get our girl what she wanted.  I didn't think she would end up drinking it - she was asking for things all day, would take a bite and not want it anymore), but to my surprise she drank about half and I had a little sigh of relief.  Not the healthiest option, but it was great to see her actually eat something today.  Hoping for a better day tomorrow.
My Sleeping Beauty


If there is one thing we have come to learn, between the steroids, pain and her emotion of being in the hospital, things can change on a dime for her and her mood.  She could be whining one second and complaining about something hurting her, not even wanting to speak a word- and then burst out something off the wall hysterical!  I miss her sassy little personality and when we see glimmers of it, I hold on so tight to those moments.  I can't wait for her to be "out of the woods" here in the hospital and somewhat back to herself-at least for more than a few moments.

With Love,

Monday, August 21, 2017

Lives Forever Changed

Lets start from the beginning.  On Wednesday, August 15th I brought Bentley in for his 1 month well-check (he is doing great, btw - 11lbs 14oz and thriving!) While we were there I asked the doctor to check Addie out because she had looked a little yellow / pale to us the past couple of days. Furthermore, she seemed tired and a little weak (I just chalked it up to her skipping her naps (she still naps each day for 2.5 hours!) the last few days because we have been soaking up the last month of Summer)).  I guess the most concerning thing was that she had fallen 2 nights prior and told me her legs felt shakey.  Again, chalked it up to my clumsy girl who like most 4 year olds trips and falls quite often. Her doctor agreed that she looked a little pale but assured me not to worry, that it was probably just a virus or maybe her iron was low. He sent us for blood work and told me he would call me that night with the results.  I never got a call so felt relieved that it was obviously nothing, or he would have called.  The next morning started off like every other Summer morning.  We stayed in bed watching cartoons, I nursed Bentley and then we headed downstairs to have breakfast.  As I was preparing her breakfast she fell again and told me it was because her legs were shaking.  I knew right then and there that something was not right.  I called the doctor's, asked for the results from the blood work and the nurse said the doctor would call back since there was nothing in her chart (don't get me started on the lack of communication with her doctor's office).  They immediately called back and said that Addie's hemoglobin was very low and I needed to take her to the ER right away.  That was the exact moment-the line in the sand that separated my once very normal, carefree and fun family life to challenging, terrifying and completely unknown.  I rushed to get the kids dressed, put them in the car, called her Dad and we sped to the hospital.  They immediately checked us in and took us back, took all her vitals (which were all normal and totally fine).  They then wanted to do more bloodwork (They told us it could totally change just from the prior day).  Honestly, having them try and find a good vein as been the most painful thing (as her Mom) to watch yet.  They stuck my baby twice before using an ultrasound to find her vein and got it on the 3rd try.  It was traumatizing to say the least, for both Addie and us.  The ER doctor came in to talk to us and find out what was going on shortly after, and though she wasn't volunteering the scary info, I started asking the scary questions.  I dreaded the worst, and knew in the back of my mind the possibility of it being what it was...but kept praying it was just that she was Anemic.  The doctor explained that if she was anemic her blood work wouldn't have presented as it did and that it was definitely not the case.  I then asked what else it could possibly be if it wasn't that (again, I knew the answer, I just wanted to hear if she would actually say the word - and she did).  She hesitantly and quietly explained that the most obvious would be Cancer (the pain to even type that disgusting word is unbearable) but whatever it was, we should plan to be here for a little while as she would need some kind of treatment.    Time stood still in that moment - like a bad dream I wanted to wake up so bad from.  How quickly things changed for us that morning, I still can't wrap my head around it.  Not long after the ER doctor was with us one of the Pediatric Hematologists came in and explained that she did a blood smear and from what she could see, it did in fact look like Leukemia, but that should would need to run further tests to confirm the exact type.  You always hear about families who have little ones battling this horrible disease, you see the gut-wrenching commercials for St. Jude on your TV, Fundraising posts on Facebook, etc. You NEVER think you will soon be a part of that world.  You never think it can happen to your child.  As I sit here and type this 5 days later, I still cannot believe its Addie, my little girl - a new and proud big sister, my sweet girl full of sass, who loves life, loves her family even more and who is so full of life and happy each and every day.

Tests confirmed that Addison did in fact have Acute Lymphoblastic Leukemia (ALL), which is the most common type of childhood cancer.  The good news (seriously?!) is that it is extremely treatable, heavily researched and has amazing outcomes.  She told us that we can expect this journey to be a total of 2 years and 3 months, but the treatment will space out depending on how Addie is doing and responding to the medication.  She could technically go into remission in a few weeks.  The doctor is going to give us her treatment plan on a month to month basis.  From the minute our doctor confirmed her diagnosis she assured us that IF Addie were to get sick with this disease - THIS is the one we would want for her to have.  She has yet to answer one single question with any bit of hesitation or doubt.  She has been extremely confident from Day 1 about what we can expect, how treatment would go and when she would be rid of this horrible disease.  We are extremely confident and grateful for the team of doctors and nurses we have helping Addie fight this battle.  The way they made it sound to us is that it is a very black and white disease.  Sadly enough (but also extremely comforting) we all know several people whose children have been diagnosed with ALL and they have all kicked its ass!  Its comforting to have other parents be able to tell us exactly what to expect during this journey.

8-18-17 Addie had a successful surgery 2 days after we got the diagnosis.  They placed a central line (port) which she now receives all of her infusions and medications through.  They also did a spinal tap and bone marrow biopsy.  She came out of anesthesia and was back to herself within the hour.  I would have been out of it the rest of the day, but Addie acted as if that day was no different - this little girl continues to amaze me and I am just so proud to be her Mommy.  The spinal tap showed no leukemia cells in her spinal fluid, which was a huge sigh of relief.  She received one dose of Chemo intrathecally and her 2 doses of steroids.  They did give her Zofran (anti-nausea meds) and she handled everything like a champ, showing no side effects.


8-19-17 Today was a rough one.  We went from having a fun and happy day full of visitors and lots of presents for our girl, to it all going downhill after Addie had several meltdowns complaining that her legs and head hurt.  She has never been one to complain, so to see her in pain and crying about how bad her head hurt was excruciating - to say the least.  They gave her some pain medicine to ease the pain and she was in and out of sleep after she calmed down.  Then it all changed again and she was back to her happy, cheerful self, as if the last 5 hours of hysterical crying and distress never happened.  The doctors said it could have been a number of things - post spinal headache, the emotion of everything setting in, the constant rounds of visitors with literally no downtime to rest other than sleep, or the steroids (one of the side effects is mood swings). The doctor explained that the pain in her legs was most likely caused by the leukemia - as the cancer is in her bones.  Today was the first glimpse of what we can expect as far as how quickly things can take a turn.  I imagine it will get easier for us as her parents to see, but the pain to see her be in pain is something I will never get use to.

We will most likely be in the hospital for the next 2 weeks (possibly less) but it all depends on what the medication is doing and how her blood counts are looking.  They need to continue to monitor her vitals and make sure she isn't spiking any fevers.  After the 2 weeks of inpatient treatment we can go home, continue the steroids and come back to their outpatient clinic once a week for her chemo.  Day 8 (8/25) is going to be a big day for us.  Day 8 they will be able to tell us what the medication is doing if anything after another spinal tap and bone marrow biopsy as well as another dose of chemo intrathecally.  Day 29 (9/15) is the other big day, as this is the day they will be able to determine her risk (right now she is Standard).  Again she will have a spinal, biopsy and dose of chemo intrathecally.  Those are the 2 key days for us at the moment, and we will continue to hope and pray for good news and outcomes.  Addison loves being in the hospital (thank God) and literally told us yesterday that she never wants to leave.  We are hoping she still feels like that in the next week or so. Her room is constantly filled with her favorite people, the staff is incredible with her (she has her first boyfriend at 4 years old named Mike....he is her nightshift nurse and wow does our girl have quite the crush!), and her room looks worse than our living room on Christmas morning....so I guess I can't blame a girl for loving it here!

This blog has been very un-loved for a long time, but I am wiping the dust off as it is going to be very useful to us for quite some time to come.  I plan to blog / journal our entire journey for several reasons.  Number 1 being that I want to have a central place for our family and friends to receive updates on Addison.  We have all been inundated with texts and calls from our loved ones asking for updates and wanting to know how we are all doing.  Not that we don't 1000% appreciate how much support and love from everyone, but we could literally be on our phones all day updating / texting / calling if we wanted to, but we just want to be by our girl's side helping her fight and also trying to keep her world as normal feeling as possible.  I also want to have this for Addison to look back on and read one day.  Being that she is 4 years old, I'm not sure what she will and won't remember.  This is going to be a huge (if not the hugest) thing in her life to go through and I want her to be able to look back on her journey. And finally, I am hoping it works as some kind of therapy for me - an outlook or escape from our scary unknown day to day.  I know my blog reaches a lot of people and I'm hoping it provides some comfort to anyone else going through this battle, or vice verse...provides support to our family from anyone who has gone through this who cares to share their experience.   My goal is to post very frequently...whether that is a short post at the end of the night recapping our day, or each week - I want to remember all the details and record them.  Some of you are probably thinking that its odd that I would want to remember everything and not just push through each day to get it over with...but as I've always said and believed...God makes no mistakes.  There is a reason for everything and there is a reason he chose Addie and our family to go through this.  He never gives us more than we can handle and I am confident that our little girl is going to be just fine.  Its a part of her now and has changed our entire world.  We have to go through this and we have to feel everything.  It only makes the happy days feel that much better.

As far as how I am holding up - I think I can speak for her dad and I both that it comes in waves.  We can be laughing and smiling with her one second and then completely break down the next, with the reality of being in a hospital bed rather than being at the pool or at home playing outside with friends.  I expect there to be ups and downs, as I expect our emotions to go up and down throughout this journey, too. We are all just trying to take one day at a time, process the information as best we can and stay as strong as we can for our girl.  I will be forever grateful for all of the outpouring of love, prayers and support from our families, friends, co-workers, neighbors and even complete strangers who have reached out to share their stories with us.  We are being held up by it all and consistently feel everyone's arms wrapped around us.  Everyone has offered to be here for us at the drop of a hat and I just hope that one day we will be able to repay all of the favors.

Thank you for reading and I hope this new journey provides support if you need it, support for all of us and comfort to anyone else going through a similar journey - to just know that you are not alone and we are all in this together.  If there has been one glimmer of light through all of the darkness, it is each story we hear, conversations we have had with nurses or phone numbers given to us of other Mom's wanting us to call so they can share their stories with us...if you are someone who has any experience with this and feels comfortable, please reach out.  Advice, positive stories, things you wish you knew, things the doctors don't warn you about, etc.  We welcome it all!  Its comforting each and every time we speak to someone familiar with this and I know it will never get old hearing from those who have walked this path before.  If you are someone who prays, I ask that you please send them our way.  We could use all the prayers, positive thoughts and hope you have to share.
 With Love,

Wednesday, May 25, 2016

Top 5 Beach Essentials!

We recently came back from a trip to St. Thomas and I wanted to share the 5 things that were in my beach bag the whole time!  If you have a fun vacation coming up, don't leave home without these!! 
Sunscreen | Floppy Hat | Sunglasses | Face Mist | Ear Buds

Check out HomeAway to book your next vacation or click here for some awesome Summer vacation ideas! 

xo,

Saturday, April 2, 2016

Bluebells

Well hello, friends!  Spring is here and its hard to not feel refreshed and inspired again with all the beautiful colors, flowers, & Spring fashion!  I always feel more motivated in the Spring to update my blog and visit different parks and places to shoot some photos!  I heard about this semi-local park and their famous Bluebells late last year, and couldn't wait to see them in-person the first chance I had!  When I scooped up this dress on major sale at Nordstrom recently, I thought it would be the perfect outfit to shoot with the Bluebells!  Also, today is the annual Light it Up Blue for Autism, so a post centered around the color Blue only felt appropriate!  The outfit is simple, but the Bluebells are amazing!  I hope you all have a beautiful weekend, and don't forget to Light it up Blue for Autism today! 

Huge props to my photographer boyfriend for this shot....I'm kind of obsessed with it!  

xo,




Thursday, November 12, 2015

Neulash: The Lash Gem!

Its been no secret that up until 2 months ago, I was at war with my lashes.  Whether it was the mascara I was using, the daily wear of false eyelashes/glue or the weather (totally kidding), they were sparse, short, would not hold a curl, stick straight - and stuck straight out!  I asked for recommendations in some of my videos and a common response was Neulash.  I did some research, read awesome reviews and loved the fact that it was so easily accessible (Macys, Bloomingdales, Nordstrom).  I loved the fact that I didn't need a prescription from my dermatologist and the price point was great compared to others on the market.  I was SOLD!  2 months later, {SPOILER ALERT} I am SO happy to report that not only does this stuff deliver, but the difference is dramatic!  I'll let the pictures do the talking.....(please forgive the scary eyeball photos and lack of makeup.  I wanted to show you them clean and without any makeup enhancing my eyes or lashes.  

My lashes today!

I am OBSESSED with this stuff!  I cannot believe what it has done for my lashes and I never want to be without it!  Its so nice to see a product deliver in such a short time!  Just a few things to note....I have not experienced any adverse reactions, the application process takes all of 30 seconds and is in the form of a thin eyeliner brush, and I apply it every night before bed.  If any of you are having eyelash woes....put this little jewel on your list for Santa, I promise you and your lashes will be so glad you did! 


Wednesday, September 16, 2015

Mini Style: Fall Fashion!


With my favorite season comes another favorite for a lot of parents - back to school!  Though I am still coping with the fact that my baby is now going to Nursery school -WAHHHHH (its literally 4 hours a week, but STILL!) I'm all for any reason to shop for my little girl! And with all this new fall fashion, its so hard to contain myself!  Seriously, I just can't with all of these little outfits and accessories!  Its crazy how easy it is to find just about any fashion trend in miniature sizes these days!  Makes it super easy for the crazy Mom's like myself that want to match their minis! Here's a round-up of favorites I've picked up for my mini!  Joggers, window pane prints & puffer vests on your little one? Yes, please!
P.S. I really have to hand it to Old Navy....they have really been stepping up their game!!
xo,

Friday, August 21, 2015

Palms Anyone?

It wasn't until my new Planner cover arrived in the mail that I realized just how many things I have that contain this very trendy pattern.  I don't know what it is about Palms - their clean and fresh and I can't seem to get enough of them. While it is obviously very trendy at the moment, I think that it can also lean a little on the neutral side of fashion (think leopard print). For someone who probably has less prints in my wardrobe that I can count on one hand, it caught me off guard by just how much I love it!  Thankfully, I am not the only one obsessing over it and therefore it is literally being splashed on every.item.imaginable!  My palms collection is beginning to look a lot like my embarrassing white T-shirt collection!  The crazy thing is, for as many things as I own decked out in Palms, I'm not tired of it and in fact I'm plotting my next purchase (hello, new throw pillows).  Here are a few things to check out if you find yourself in the same boat and going a little goo-goo-ga-ga for the palm print!
How do you feel about this trend? Love it or leave it?
xo,

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