Just 7 days, 168 hours and 10,080 minutes since Alivia and I had to say "see ya later" to our family, friends, home and all that we know. It has been a long week of heartache, frustration and so much sadness along with so many blessings that have been placed on our journey to make these changes in our lives a little easier.
To start off I realized how hectic, scary and just plain difficult it was going to be to drive 8+ hours by myself with a baby which prompted me to ask my dear friend Sara to consider being my co-pilot and then flying back home. As I waited for her to try and rearrange her work schedule to accommodate this trip, Paz, my mother in law was visiting and was supposed to fly back home on Saturday 1/26 although mother nature had other plans causing delays in her flight. As we all were thinking out of the box and trying to figure out the best way to go about everything, we thought we would try and change her tickets and depart from Cincinnati airport instead. I approached the flight attendant at the check-in counter in CR and explained the situation, she was hesitant, but offered to try and see what she could do. Nearly 20 minutes later, after searching options and speaking to another worker we were handed a new ticket for Paz to depart from Cincinnati and get back to her family in California. There were no extra costs associated for extending her trip nor changing the itinerary on this basic economy airfare ticket. There's no explanation other than God was there and wanted to let me know in the most discreet way possible. That was when I couldn't contain the flood of emotions and the bawling began! As I stated previously it was Saturday and I was to leave on Monday after dropping Meli off at school and still had not a thing packed. Wishful thinking was what happened and perhaps a tad bit of procrastination. If I didn't pack would we still be forced to continue on this journey?
The rest of the weekend flew by as we enjoyed time with my family and our closest friends. I had to start saying "see you later" that felt like goodbyes. My whole heart just hurt so badly meanwhile Livy was her normal baby babbling and playful self. I would just look at her and her energy and positivity gave me the strength to be brave and continue on. Monday 1/28/2019 came way too fast and I wasn't ready, but when would I be ready or how could I possibly prepare for all of this?
Please continue to pray for her good health, bravery and courage each day as she fights against HLH syndrome. Please pray for strength, patience and strong faith to surround Oliver, Meli and myself throughout the upcoming weeks.
Believe it or not 4 snow days in a row were a blessing to me and my sweet girls! We got to enjoy even more time together and dig deep into conversation about our emotions as it all just seemed so real as the separation was around the corner. This all was really happening no matter how much we liked it or not, so having the extra time together is something I will forever be grateful. God knew without a doubt I needed that time with Meli.
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| (Paz and Livy as we dropped her off at the airport in Cincy) |
The rest of the weekend flew by as we enjoyed time with my family and our closest friends. I had to start saying "see you later" that felt like goodbyes. My whole heart just hurt so badly meanwhile Livy was her normal baby babbling and playful self. I would just look at her and her energy and positivity gave me the strength to be brave and continue on. Monday 1/28/2019 came way too fast and I wasn't ready, but when would I be ready or how could I possibly prepare for all of this?
Oliver packed up the car, we said our goodbyes and off he went to work. I had this gut wrenching, empty stomach feeling and couldn't focus on anything. Thankfully it was ANOTHER snow day and I didn't need to drop Meli off at school knowing she was going to struggle the entire day as 2 pieces of her life and heart were going to be so so far away! We had a discussion about change and how change is always good, but that smart girl of mine said " Mom how can this change be good, I am going to miss you and Livy so much, this isn't fair". My heart had no words, no response, no way at all to console her feelings, but my mind did. I swallowed what felt like my stomach in my throat and responded "Meli, all change is good! Without this change Livy could get very sick which would make her very sad. You are right, it isn't fair, but neither is life. Sometimes you work hard, take care of your things and then other people think they need your things more than you and come along and steal those things or sometimes friends change and hurt your feelings or even things like this with peoples health, it seems that those who take care of themselves the most are the ones with the most health problems. It's all just apart of life. The good part amongst all the sadness and heartache that change can cause is that you learn from it, you are in control of how you react to all the change and in the end it will be okay no matter what" A good friend once said "Remember this isn't forever" those 4 words will always be on my mind and mean so much to me!
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| (Sisters, saying "see ya later") |
Meli, Livy and I said our goodbyes and I dropped her off with a dear neighbor of ours, I went through 2 packages of tissues and an hour and half later I found myself close to Davenport. I also found myself focusing on all of our blessings! We had each other, by no means were we alone regardless of the distance that separated our family, friends and amazing support from our community, we have technology that we can depend on to see each others smiles, we gained a whole new family that awaited our arrival with open arms in Indiana, Livy is healthy and able to be outpatient while many HLH patients are in patient receiving Chemo and a combination of many meds to keep this awful disease at bay, God is present and makes it known every step of the way as we face such a heartbreaking journey. Through these thoughts I found myself realizing that I need to really focus on all the good when the bad days come. I know myself and know that I will still be mad, sad, and angry all over again! I didn't order this and absolutely despise that my sweet, spunky, chunky cheeked baby girl has to go through this, but I will try time and time again to focus on the positive through this journey! Feel free to remind me personally of this!!
There are so many details of things that didn't go our way or as planned the first week of
appointments, but we survived! Livy and I are a little bit stronger and knowledgeable because of it. I may or may not have a couple gray hairs...but I most certainly have a journey to share when the time comes. The care that Alivia has received at Cincinnati Children's has brought tears to my eyes each appointment thus far. There is clear cut communication, their technology/charting system actually works, staff from all levels take pride in their piece of this puzzle and we are cared for beyond expectations. By all of this I have been reassured WE chose THE BEST hospital to care for Livy as she undergoes treatment for Primary HLH Syndrome.
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| (Little Livy has found her sleepy spot @ the Hooten Hilton) |
When we left home we left thinking that the next time we would see each other would be the weekend before the BMT day! Although things have already changed. This too has served a purpose for me to accept that there are going to be countless ups and downs through this journey and I can either be upset or just accept them and move on. With that things have changed and Dr. Marsh (Livy's main HLH DR) has requested she be in complete isolation once she starts Chemo on 2/18/2019. Meli will not be able to be here with us as planned. I have no idea how I am going to break it to my sweet girl, but Oliver and her will be here this weekend to spend some time together before Chemo starts! I CAN'T WAIT and either can Little Livy! We Face Time everyday with Oliver and Meli and she just wants to grab the phone and kiss it, squeeze it and have the best big sister known to man here with her!
So what's next? We have today and Tuesday off.. NO APPOINTMENTS....NO NEED TO BE ANYWHERE AND JUST RELAXING in the Hooten Hilton sanctuary!! Wednesday she has 2 appointments, Thursday off and Friday a big day. She will have another bone marrow biopsy, lumbar puncture and her port placed requiring anesthesia through it all of course. Alivia will be admitted for observation and discharged on 2/9. We will have next week off besides a day that I need to go and sign all the paperwork for the bone marrow transplant, yes I WOULD LOVE to come home, although she needs to be within 30 minutes of the hospital in case of an emergency. Then on 2/18 she will start Chemo and the real roller coaster will begin.
Please continue to pray for her good health, bravery and courage each day as she fights against HLH syndrome. Please pray for strength, patience and strong faith to surround Oliver, Meli and myself throughout the upcoming weeks.
Sending a huge thank you to all of our family, friends and communities (Iowa and Indiana) for supporting us through this tough time. Thank you to the Hooten family for opening their home to us and making us feel as though we are at home in every way possible, as well as being our new family away from home. God knew we needed them as well. Morgan their daughter has been a blessing to us without a doubt! The way she plays with Livy brings so much joy to our lives and the way she makes me smile and laugh just makes my heart so happy. Teresa and Kenny are too, amazing role models.
We are so so grateful to be where we are in this journey.
Sending lots of love to you all! Make sure to hug your family and love each other each moment you are blessed with! This world can be such a cold and scary place, but if we just love a little more we can be the change it needs!
XOXOXO,
CeeCee
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