Little did I know there were countless
blessings that awaited us on this journey! As I drove to Cincinnati some thoughts of mine were very much like those "light bulb moments" we all have here and there. I realized our lives weren't falling apart, but better yet falling into place. Therefore I wanted to backtrack a little bit and share all of the blessings thus far!
The first being the Hooten's! I was so incredibly nervous! As I was about 20 miles away from their home known as the Hooten Hilton, I realized and thought to myself "I only know what they look like based off of Facebook photos." We had only exchanged messages and spoken on the phone once. Before I knew it I had arrived at their beautiful home. Their home is at the top of a hill, as I drove up it, I said to myself "ready or not here we go!" I felt as though that hill was symbolic and was there to remind me there will be ups and downs throughout this journey, but it WILL be okay! I forever have my seat belt on and am ready to fight, motivate and give strength to OUR little Livy! They opened up the garage and signaled for me to pull into their garage! I almost forgot to put the car in park as I was drawn to Teresa. I instantly knew she was a hugger JUST LIKE ME! She's that lady you see at the super market and admire as you can see her inner beauty shine through making her even more beautiful on the outside. Then there was Kenny her husband. I was nervous as men can be wired "so differently". He obviously agreed to open their home to us, but I was so worried about intruding and being in their space. I didn't want to be a burden. About 30 minutes into our arrival I thought to myself "how silly of you Cassandra to think those things". He unloaded my car and hurried down to be apart of our conversation with Teresa, Morgan and Paz my mother in law (she rode along and caught a flight back home from Cincy so I wouldn't of had to travel alone with Alivia). I could tell that he not only opened his home, but he opened up his heart and we were not just strangers staying at their home, but actual people that he couldn't wait to get to know more! We wanted to exchange our whole life story with one another, but it was late and we were all exhausted. Alivia had her 1st appointment at Cincinnati Children's at 8am as well as Paz needed to be at the airport by 6am which meant we would need to wake up and leave the Hooten Hilton by 5am as there was an hour drive. So we hugged each other and reassured each other we had plenty of time and off to bed we went! The next few days were rough as we were getting situated, soaking it all in as if we were submerged sponges, and accepting the fact that we weren't in control. Alivia had an appointment everyday and everyday seemed to have its challenges. None of the appointments went as planned or as scheduled and it was frustrating! After that first week I was feeling so incredibly overwhelmed, I was so tired and just wanted to sleep in! The Hooten's invited me to go to Morgan's basketball game and attend their church service at The Ridge (btw it was the most amazing service I have ever been too), of course I accepted and off we went to both that first weekend away from home! Morgan's basketball was so fun! Witnessing Morgan in her element and so proud to show off her basketball skills warmed my heart! She even made a "Team Mo Mo" sign for us to hold up on behalf of Livy....their bond is pretty awesome! On Sunday we rode together and there was something about that day that will forever be special to me. I woke up early and got ready....like actually did my hair and makeup! I felt excited to just go somewhere new and not have to worry about anything medical related. I had many things I needed to thank God for and also had needs I needed to beg for, maybe that's why I was excited. Little did I know that Adam from The Ridge must have been a fly on the wall at the Hooten Hilton because I felt as if I was the only one he was preaching to. It was all so relevant and fit where I was on this journey! As he dug deeper into his topics, I felt it a little more and more. My heart was so sad, but my mind took control and I would just smile. He helped me right there in that moment. He reminded me that I needed to trust God's plan, believe in it and relax on this journey! I did all I could do, I along with Oliver made the BEST decision to bring her to the BEST hospital for treatment. I had advocated for her to get her to this point! I took care of her the best I possibly could to keep her healthy for the months prior to this admission. I wasn't in control and I really needed to just let be what was going to be.
The first being the Hooten's! I was so incredibly nervous! As I was about 20 miles away from their home known as the Hooten Hilton, I realized and thought to myself "I only know what they look like based off of Facebook photos." We had only exchanged messages and spoken on the phone once. Before I knew it I had arrived at their beautiful home. Their home is at the top of a hill, as I drove up it, I said to myself "ready or not here we go!" I felt as though that hill was symbolic and was there to remind me there will be ups and downs throughout this journey, but it WILL be okay! I forever have my seat belt on and am ready to fight, motivate and give strength to OUR little Livy! They opened up the garage and signaled for me to pull into their garage! I almost forgot to put the car in park as I was drawn to Teresa. I instantly knew she was a hugger JUST LIKE ME! She's that lady you see at the super market and admire as you can see her inner beauty shine through making her even more beautiful on the outside. Then there was Kenny her husband. I was nervous as men can be wired "so differently". He obviously agreed to open their home to us, but I was so worried about intruding and being in their space. I didn't want to be a burden. About 30 minutes into our arrival I thought to myself "how silly of you Cassandra to think those things". He unloaded my car and hurried down to be apart of our conversation with Teresa, Morgan and Paz my mother in law (she rode along and caught a flight back home from Cincy so I wouldn't of had to travel alone with Alivia). I could tell that he not only opened his home, but he opened up his heart and we were not just strangers staying at their home, but actual people that he couldn't wait to get to know more! We wanted to exchange our whole life story with one another, but it was late and we were all exhausted. Alivia had her 1st appointment at Cincinnati Children's at 8am as well as Paz needed to be at the airport by 6am which meant we would need to wake up and leave the Hooten Hilton by 5am as there was an hour drive. So we hugged each other and reassured each other we had plenty of time and off to bed we went! The next few days were rough as we were getting situated, soaking it all in as if we were submerged sponges, and accepting the fact that we weren't in control. Alivia had an appointment everyday and everyday seemed to have its challenges. None of the appointments went as planned or as scheduled and it was frustrating! After that first week I was feeling so incredibly overwhelmed, I was so tired and just wanted to sleep in! The Hooten's invited me to go to Morgan's basketball game and attend their church service at The Ridge (btw it was the most amazing service I have ever been too), of course I accepted and off we went to both that first weekend away from home! Morgan's basketball was so fun! Witnessing Morgan in her element and so proud to show off her basketball skills warmed my heart! She even made a "Team Mo Mo" sign for us to hold up on behalf of Livy....their bond is pretty awesome! On Sunday we rode together and there was something about that day that will forever be special to me. I woke up early and got ready....like actually did my hair and makeup! I felt excited to just go somewhere new and not have to worry about anything medical related. I had many things I needed to thank God for and also had needs I needed to beg for, maybe that's why I was excited. Little did I know that Adam from The Ridge must have been a fly on the wall at the Hooten Hilton because I felt as if I was the only one he was preaching to. It was all so relevant and fit where I was on this journey! As he dug deeper into his topics, I felt it a little more and more. My heart was so sad, but my mind took control and I would just smile. He helped me right there in that moment. He reminded me that I needed to trust God's plan, believe in it and relax on this journey! I did all I could do, I along with Oliver made the BEST decision to bring her to the BEST hospital for treatment. I had advocated for her to get her to this point! I took care of her the best I possibly could to keep her healthy for the months prior to this admission. I wasn't in control and I really needed to just let be what was going to be.
That next week I had 2 days off and a
really tough day on 2/8. That's when Livy was getting her central line placed
along with another lumbar puncture and another bone marrow biopsy requiring her
to be put to sleep via general anesthesia. Every bone and muscle in my body
hurt for her! My faith was really being tested, but I had Teresa with me at the
hospital! She distracted me as she's so funny (she's a Blondie and her southern
accent just makes me laugh)...ha ha and she just has so many experiences and
stories that I find so interesting! Before I knew it they called
"Colin" and that was our cue that Livy was waiting for us in
recovery. We hustled back there....her eyes were swollen from crying...I have
never seen her like that and I couldn't console her....which was incredibly
heartbreaking. The nurse told me that she was coming out of the anesthesia and
its normal for them to feel light headed and dizzy which they aren't used to so
its normal for them to cry. But this was Livy Rae and she loves her mama AND to
breastfeed...and not even that could calm her down. It was all setting in and
did even more when I had to look at her little chest with a tube coming out
with a blue stitch holding it in tact on her skin. I felt scared to move her and
to love on her as I ultimately didn't want to cause any pain or discomfort. We
had to stay the night for observation on the BMT unit. I looked at it as an
opportunity to see where we were going to be for the next few months as well as
an opportunity to ask the nurses questions to feel better about all of these
changes that awaited us. Teresa helped get us settled into our room, went to
the cafe to get us dinner and we were just talking. It was getting late, but for
some reason her leaving to get home (an hour drive) wasn't a priority. My phone
rang and it was a Cincinnati area code...my heart dropped as I had Livy in my
arms, perhaps something happened in that OR and the Dr's were calling. I looked
aimlessly towards Teresa and the nurse and just blurted I have to answer. I did
and got yet another blessing. A call from Denise from the Ronald McDonald house
asking if we would be able to accept a room that had came available! OF COURSE,
I said yes! I finished nursing Alivia and was so excited that Teresa was still
there so she could go with me to complete paperwork and get the keys to yet
another new home for us!
That night I slept so good! I woke up
ready to see Oliver and Meli (it had been 2 weeks that felt like 2 months)! We
got to leave the hospital earlier than expected as Livy did great overnight! We
went back to the Hooten Hilton to freshen up and relax before picking up Oliver
and Meli. Not only I, but Livy was quite anxious that day too! I remember
wanting to take a nap and she wasn't having it as if she didn't want to miss a
thing! This girl may be little, but let me tell you.....she's a smart cookie!
They arrived and we caught up over dinner as we enjoyed being together once
again! At this point on this journey I realized being a mom is where my happy
place in this world is! Seeing Meli light up as she interacted with Livy and
watching Livy's little eyes sparkle as she watched and retained all that Meli
talked to her about brought tears to my eyes.
Their time here surely wasn't long enough,
but we made the best of it! We stayed up until 1:00am 7 out of 10
As I checked in, the receptionist asked
for my ID as they make badges for in-patient caregivers to have. Side note-
Security here is something I never have seen before. There is no way for anyone
to get somewhere they are not supposed to be as there are 3 guards at each
elevator! This brings so much comfort and makes safety of no concern at all!
Back to checking in....the computer to print picture badges was down and she
said "depending on how long you'll be here you can get it updated with a
picture, but by looking at her I'm sure you wont need to worry about that! She
looks great". I looked at her and accepted the badge and my tears started
to flow. I didn't hold back and told her "we are expected to be here 8-10
months post transplant which means the clock wont start ticking for another
month or so, with that being said what do I need to do for this whole badge thing?"
I of course choked on my words and she too started to tear up....I didn't mean
to do that to her, but it was all setting in!
We got up to our room and it just felt so
cold,I wanted to just curl up with my favorite blanket and cry my heart out,
but I couldn't as I had a beautiful little baby girl that was eager to get out
of her car seat and check out where we were. She was full of smiles and looking
all around! I thought to myself "Where's the baby that has an old soul and
knows everything, because she wasn't here?!" I was wrong! She was here and
since day 1 of this nightmare she has made it so very easy to be her mother!
Livy is full of life, laughter and love! She has went through hell and back
numerous times and each time she finds a way to laugh and love shortly after!
This is why we have created the hash tag #LiveLaughLoveForLivyRae.
We have had some ups and downs thus far,
but all in all, we are so incredibly blessed, thankful and completely grateful
for the opportunity to be able to have her treated at Cincinnati Children's
hospital! The expertise, knowledge and experience with HLH is phenomenal!
Tomorrow is CELL DAY! She is doing GREAT! At rounds each day the doctors are
amazed that she is still eating, playing and looks great! These are all signs
that she is going to fight through this like she knows no different! Oliver and
I are feeling overwhelmed, nervous, scared, but yet have strong faith that
God's got this and most importantly he has Alivia! As we all lift her up in
prayer, he is reminded how much she has blessed this world thus far and how
much she will continue making a difference as he grants her the strength to
overcome this challenge!
Please continue to pray for her, the
healing of her donor (a 20 year old male that lives internationally), the
nurses and doctors that care for her day in and day out as well as all of our
family and friends! HLH has brought so much heartache and sadness to all of
those it has affected! There needs to be more awareness and the only way is
sharing our story!
Take a second today to Live, Laugh and
Love for Livy Rae! She can't be strong alone, she needs you too, to be strong
for her! Light your candles/lights as we guide Livy through this journey!
XOXO,
CeeCee
Thank you for sharing your story. We are praying for Livy and your entire family. God bless your little sweetheart on this journey.
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