Phew! Another Monday...Another start to a new week...Keep on swimming, swimming, swimming. We can do this & WE WILL! I am trying to stay positive and keep my head up, but I feel it. Its right around the corner. My life is about to change. Our life is about to change. My sweet 6 year old is going to grow up even more as she becomes self sufficient and even more independent! She's going to change in ways I have never imagined. My 8 month old is going to go through hell to fight for her life, so she can be the greatness that this world needs! & Oliver and I are going to have to balance it all out while being 500 miles apart. I'd be lying if I said I am fine because I am far from it! My emotions are all over the place and I am finding myself wiping tears away a lot more. We are being forced to go through this to save our sweet girl! There's no other option! Every time someone asks for an update I am reminded, that this is literally happening! My bones ache, my muscles hurt and I have this constant headache right above my eyes that makes me want to just close my eyes, hold on to my family and escape this nightmare without pain and suffering! But then I am reminded that's not reality! You have to fight for what you want in life and always work hard, so here we go!
As some may know, Livy caught some type of GI bug causing her to have been throwing up and unable to keep meds down which once again landed her a direct admission to the U for 2 days. On top of this there have been some issues with the insurance authorizing to transfer care to Cincinnati so we are working on that as well! Regardless if insurance approves or not Alivia needs to go to Cincinnati for treatment. HLH mimics cancer in the sense that it is very aggressive and will take over if the right decisions aren’t made in time! Alivia will be very sick post transplant. There will be no time for waiting or trial and error! Therefore we need doctors and medical staff that know HLH and have experience with all types of patients recovering from this nasty disease! So the waiting continues! If the insurance doesn't approve it we will need to pay a down payment and go from there.
I have prayed and prayed for Alivia to be able to be baptized in a "normal" setting! I didn't want her in a hospital bed, wires all around her and in a hospital gown! I wanted her to be free from all of that and be able to put her in beautiful white attire that signifies purity. I wanted there to be sunshine to enjoy this beautiful sacrament and surrounded by those that love and care for us the most! This past weekend, I got just that! Another blessing in disguise! It was totally last minute, but it was beautiful! As the father prayed, blessed her and preached, Livy had lots to say back to him. It was the cutest little thing that filled my eyes with happy tears and had everyone there smiling from ear to ear! She's a tough cookie! She's going to tackle this like no one has before and on the hard days, I am reassured God will be there to keep her strong from the inside out. My heart hurts a little less and my mind is at ease as I accept the fact that what's meant to be...is going to be!
We have received so much support from close friends and family, coworkers, neighbors and even family of our friends! I cant express how much gratitude we have for all of you, it literally leaves me speechless with each act of kindness and generosity! The GoFundMe page has almost reached $1000! That alone will help pay the costs to have a room at the Ronald McDonald House for 1 month as it's $25 a day, and then some! Oliver will continue to work throughout all of this. He will miss some time hopefully towards the end of Chemo, but for sure post transplant! They have warned us that's when Alivia will be the sickest, for about 3-6 weeks. It will be scary, heart breaking through all the ups and downs and include many sleepless nights by her side, so I can't imagine being there alone, I will need him! So please consider sharing and helping in any way! Even prayers are important! Miracles happen everyday! There are these guidelines and time frames in place, but this ENTIRE time she has been a "unique case of HLH syndrome" so there's no reason we cant stick together lift her up in our prayers and help shorten her time away from home! But just know when the day comes that we get to bring Livy home, there will be a huge celebration in the works with you all! I can't wait until that day! To hug you all, share her with everyone and smile knowing we defeated this battle TOGETHER!
As some may know, Livy caught some type of GI bug causing her to have been throwing up and unable to keep meds down which once again landed her a direct admission to the U for 2 days. On top of this there have been some issues with the insurance authorizing to transfer care to Cincinnati so we are working on that as well! Regardless if insurance approves or not Alivia needs to go to Cincinnati for treatment. HLH mimics cancer in the sense that it is very aggressive and will take over if the right decisions aren’t made in time! Alivia will be very sick post transplant. There will be no time for waiting or trial and error! Therefore we need doctors and medical staff that know HLH and have experience with all types of patients recovering from this nasty disease! So the waiting continues! If the insurance doesn't approve it we will need to pay a down payment and go from there.
I have prayed and prayed for Alivia to be able to be baptized in a "normal" setting! I didn't want her in a hospital bed, wires all around her and in a hospital gown! I wanted her to be free from all of that and be able to put her in beautiful white attire that signifies purity. I wanted there to be sunshine to enjoy this beautiful sacrament and surrounded by those that love and care for us the most! This past weekend, I got just that! Another blessing in disguise! It was totally last minute, but it was beautiful! As the father prayed, blessed her and preached, Livy had lots to say back to him. It was the cutest little thing that filled my eyes with happy tears and had everyone there smiling from ear to ear! She's a tough cookie! She's going to tackle this like no one has before and on the hard days, I am reassured God will be there to keep her strong from the inside out. My heart hurts a little less and my mind is at ease as I accept the fact that what's meant to be...is going to be!
This past weekend Meli also started dance classes! She's so so excited as one of her sweetest pals Stella was born to be a dancer and now they will share the love for dance as Meli learns all about it! If you see her around ask her about what kind of dance she's in and if she's excited! Her smile will tell all! We were so worried I wasn't going to make it to her first practice...but I DID! Another blessing in disguise! She will have a recital in June and in December...I don't even want to think about the June one and not being able to be there, but we will cross that bridge when it comes! Practises are on Saturday mornings so Oliver and her will have something to look forward to, to keep them busy and bonding at a whole new level....he isn't too fond of her being in dance, but it will grow on him, I just know it! HAHA
We have received so much support from close friends and family, coworkers, neighbors and even family of our friends! I cant express how much gratitude we have for all of you, it literally leaves me speechless with each act of kindness and generosity! The GoFundMe page has almost reached $1000! That alone will help pay the costs to have a room at the Ronald McDonald House for 1 month as it's $25 a day, and then some! Oliver will continue to work throughout all of this. He will miss some time hopefully towards the end of Chemo, but for sure post transplant! They have warned us that's when Alivia will be the sickest, for about 3-6 weeks. It will be scary, heart breaking through all the ups and downs and include many sleepless nights by her side, so I can't imagine being there alone, I will need him! So please consider sharing and helping in any way! Even prayers are important! Miracles happen everyday! There are these guidelines and time frames in place, but this ENTIRE time she has been a "unique case of HLH syndrome" so there's no reason we cant stick together lift her up in our prayers and help shorten her time away from home! But just know when the day comes that we get to bring Livy home, there will be a huge celebration in the works with you all! I can't wait until that day! To hug you all, share her with everyone and smile knowing we defeated this battle TOGETHER!
So what's next?
- Get the date of when outpatient appts will begin (Appts will be in Cincinnati)
- Move there by that given date
- Start outpatient appts (These will be daily appointment's for 2 weeks). As we are outpatient we will be staying with a friend of a family friend of ours...ANOTHER blessing in disguise! It is referred to as the Hooten Hilton Resort about an hour away from the hospital, but we are so so thankful for this as well! I won't need to be alone in a hotel with a baby! We will be in the comfort of a home and have an amazing family to keep us company!
- Alivia will be admitted and Chemo will start, this treatment too will last for 2 weeks. It is a less aggressive Chemo therefore the medical team suspects she won't be as sick and just not feel as well until the last couple days. She will lose her beautiful hair and change in different ways, but she will still be our Little Livy!
- TRANSPLANT DAY! I totally have bittersweet feelings about this day! This is the day that my sweet girl will get the chance to get what she needs in order to fight this battle! This is the day that I will want to hug and express my gratitude to the selfless, generous, kind and absolutely amazing human being that SAVED LITTLE LIVY'S LIFE...but I will need to depend on prayers to deliver that until we can meet them 1 year post transplant!
- The day after transplant will be referred to as Day 0 of treatment. You know how they say you have to hit rock bottom to get back up and build yourself up again? That's exactly what Livy Rae will be doing!
- They have told us to expect for her to be in-patient in Cincinnati for 8-10 months from this point as she recovers. Many of said to me why so long? This really isn't long at all when compared to other HLH patients. Originally we were told anywhere from 18-24 months so I WILL TAKE 8-10 and not think twice! She will be getting a whole new immune system. Take a second to think about it, it took her 9 months to grow inside of me and ready to come into the world, so its going to take time for her body to adjust and figure it all out. There's chances of her body rejecting the 1st transplant, which means she would need another and lots and lots of risks with all of this, but since there isn't a cure this is our ONLY option!
Please pray with us daily for strength to surround us all, courage to conquer all the obstacles that await us, bravery to beat this battle and to find the positive in each step along our journey.
Please too take care of yourselves because we can't do this alone, we need your support and love along the way! Remember to be be kind to each other, after all you never know what someone else may be going through regardless of how they compose themselves, your kindness could be just what they need to fight a little harder each day!
Sending the biggest hugs to you all!
XOXO~CeeCee
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