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,