Santa came! Holiday break is over! We are home from our trip to Cincinnati Children's Hospital! Oh and IT'S 2019!!!
Ameliah, Alivia, Oliver and I have made so many memories, had an awesome Christmas and we've accepted what awaits us these next few months...maybe not so much Little Livy, but the rest of us for sure.
We have decided we will be taking Alivia to Cincinnati for care. We would be silly not to! Every single question that covered each line of 6 pages in my notebook (front and back). Our 4 hour appointment took 6.5 hours and they were perfectly fine with that. I was reassured not only by the doctors but by their knowledge and expertise that I will be able to be her mom throughout this instead of keeping everything straight as if I were a live human charting system. The cherry to top it all off was that Livy only had to be poked once! Just to give you an idea of how much this means, she hasn't had this experience since October 2018 when she was inpatient at the U of I. They took the extra time to plan it out, get the right materials/technology and really took into consideration what Alivia has already been through to make it as easy as possible on her. She by no means was "just another patient". Therefore we will sacrifice everything for my sweet girl to get the care she deserves as she fights this nasty disease no matter what it takes!
What's next is the question a lot of our closest family and friends have for us! So below I am going to explain it all as best as I can! I feel like this all is so complex and I can only imagine what it feels like to you all as you aren't consumed with it day to day!
1. Alivia and I will be moving to Cincinnati by 1/21/2019. She will have daily appointments for approximately 2 weeks to prepare her for the chemo regimen.
2. She will then be admitted to start Chemo for 2 weeks.
3. Once Chemo is over she will then receive her Bone Marrow Transplant (BMT).
4. That's when recovery will start. We have been told given her history, how fast we caught it and how healthy she is we can expect to be home in 8-10 months post transplant.
Many have also asked where I will live throughout this all. As she will be outpatient for 2 weeks, we will have to be in a hotel. Once she is admitted we will be able to get on the waiting list for the Ronald McDonald House that is right across the street from the hospital. I have been told the longest that the list has been is 20 days, but once she is admitted I will be able to sleep on the couch in her room so no need for a hotel! I wont be leaving her side much if at all, I just never ever want her to wake up scared or feel alone by me not being there with her. Oliver and Meli will stay home as he will need to continue to work as well as Meli's school routine is also important to us. She has such an amazing support system there and we wouldn't change it for the world! Oliver will travel to Cincinnati as the time comes for Alivia to go through Chemo and BMT, but Meli will stay behind. We don't want her to see her baby sister so sick and sad, that would break Meli's heart and scare her even more. She will be busy having fun with family/friends and being a 6 year old as she should.
We are optimistic and believe in God's plan with out a doubt! Livy is healthy now, we were able to enjoy the holidays as a family and in our own home, she has 10 possible matched donors, and Cincinnati is far from home, but it could be worse. No matter how optimistic we are there is always another side to everything. There are chances that the bone marrow transplant #1 isn't enough and she may need another and another. There could be complications along the way of her recovery that lengthen her stay or cause other issues. I could go on and on about the what ifs...but what I rather do is think about the facts! I know that Livy Rae is one tough cookie! My mama instinct is telling me it is a process for sure, but SHE'S GOT THIS! I know that the knowledge, expertise and experience with Primary HLH syndrome is at the Cincinnati Children's Hospital where WE ARE able to take her!
I still am finding myself working through it all. I have challenged myself to find 2 positives to each feeling that I go through! I am so nervous to be there alone in a city I know nothing about, but I know the language and have the support of the hospital resources to help! I am completely heart broken about being torn between my girls, but I have the support of family/friends and have technology that will help. I am so worried about Oliver as he doesn't have much support here with his family far away, I have "spoiled" him and Meli in the sense that I do everything for them and now they will be on their own, but it will be good for their relationship as father and daughter to grow together in a way that without all of this may never have evolved as well as when we do come home our "norm" will be a new "norm" and so it's better that everyone becomes independent in their own ways. I still am so mad that Alivia even has to go through this, but I have found out that Oliver and I both are carriers of this disease therefore I now have knowledge I didn't before and one of the 3 best hospitals in the world is going to help her fight this! I am so incredibly sad that she won't continue to have a year of firsts as I imagined, she won't meet milestones on time, but she will at SOME POINT and she will learn other things that I still cant even imagine! It's crazy how fast you have to let go of what you imagined life to be and accept, embrace and start the one that's meant for you regardless of how you feel about it. It is what it is!
So here we are! We will continue to enjoy the next couple weeks at home eating our favorite home cooked meals, enjoying each other and smiling every second possible! We will start introducing new routines in hopes for Livy and I's departure to not be so hard on us all! We ask that you continue to share Livy's journey as this is considered "a rare disease", but only because it is misdiagnosed everyday! Many times once it is diagnosed its too late and major organs have been affected in which there's no reversal! The only way to fight against this is to raise awareness! I have said it before and I will say it again! If you have or know a baby/child that isn't getting better after a cold/infection or has random fevers advocate for more and more testing to be done! I by no means am an expert, but I can share Alivia's story to serve a purpose for anyone with questions regarding HLH syndrome.
We are so grateful for all the support from our community, friends and family that have shared, continue to pray for all of us as well as their generous donations! You all are making it a reality and possible for Alivia to get care so far from home as well as helping us through this time as we are torn between being there for her, but still needing to take care of financial responsibilities!
Below is a link for the GoFundMe page, as well as Alivia has an account in her name (Alivia Rae Colin) with Oliver and I both on it at the University of Iowa Credit Union that has been established to help with all the costs associated to saving her life.
https://www.gofundme.com/livy-strong
Thank you for the bottom of our hearts! We wish you all a very happy new year full of blessings, good health and challenges with happy endings! Make sure to smile today, find the good in something and try your best to just be happy!
XOXO
CeeCee
Ameliah, Alivia, Oliver and I have made so many memories, had an awesome Christmas and we've accepted what awaits us these next few months...maybe not so much Little Livy, but the rest of us for sure.
What's next is the question a lot of our closest family and friends have for us! So below I am going to explain it all as best as I can! I feel like this all is so complex and I can only imagine what it feels like to you all as you aren't consumed with it day to day!
1. Alivia and I will be moving to Cincinnati by 1/21/2019. She will have daily appointments for approximately 2 weeks to prepare her for the chemo regimen.
2. She will then be admitted to start Chemo for 2 weeks.
3. Once Chemo is over she will then receive her Bone Marrow Transplant (BMT).
4. That's when recovery will start. We have been told given her history, how fast we caught it and how healthy she is we can expect to be home in 8-10 months post transplant.
Many have also asked where I will live throughout this all. As she will be outpatient for 2 weeks, we will have to be in a hotel. Once she is admitted we will be able to get on the waiting list for the Ronald McDonald House that is right across the street from the hospital. I have been told the longest that the list has been is 20 days, but once she is admitted I will be able to sleep on the couch in her room so no need for a hotel! I wont be leaving her side much if at all, I just never ever want her to wake up scared or feel alone by me not being there with her. Oliver and Meli will stay home as he will need to continue to work as well as Meli's school routine is also important to us. She has such an amazing support system there and we wouldn't change it for the world! Oliver will travel to Cincinnati as the time comes for Alivia to go through Chemo and BMT, but Meli will stay behind. We don't want her to see her baby sister so sick and sad, that would break Meli's heart and scare her even more. She will be busy having fun with family/friends and being a 6 year old as she should.
We are optimistic and believe in God's plan with out a doubt! Livy is healthy now, we were able to enjoy the holidays as a family and in our own home, she has 10 possible matched donors, and Cincinnati is far from home, but it could be worse. No matter how optimistic we are there is always another side to everything. There are chances that the bone marrow transplant #1 isn't enough and she may need another and another. There could be complications along the way of her recovery that lengthen her stay or cause other issues. I could go on and on about the what ifs...but what I rather do is think about the facts! I know that Livy Rae is one tough cookie! My mama instinct is telling me it is a process for sure, but SHE'S GOT THIS! I know that the knowledge, expertise and experience with Primary HLH syndrome is at the Cincinnati Children's Hospital where WE ARE able to take her!
I still am finding myself working through it all. I have challenged myself to find 2 positives to each feeling that I go through! I am so nervous to be there alone in a city I know nothing about, but I know the language and have the support of the hospital resources to help! I am completely heart broken about being torn between my girls, but I have the support of family/friends and have technology that will help. I am so worried about Oliver as he doesn't have much support here with his family far away, I have "spoiled" him and Meli in the sense that I do everything for them and now they will be on their own, but it will be good for their relationship as father and daughter to grow together in a way that without all of this may never have evolved as well as when we do come home our "norm" will be a new "norm" and so it's better that everyone becomes independent in their own ways. I still am so mad that Alivia even has to go through this, but I have found out that Oliver and I both are carriers of this disease therefore I now have knowledge I didn't before and one of the 3 best hospitals in the world is going to help her fight this! I am so incredibly sad that she won't continue to have a year of firsts as I imagined, she won't meet milestones on time, but she will at SOME POINT and she will learn other things that I still cant even imagine! It's crazy how fast you have to let go of what you imagined life to be and accept, embrace and start the one that's meant for you regardless of how you feel about it. It is what it is!
So here we are! We will continue to enjoy the next couple weeks at home eating our favorite home cooked meals, enjoying each other and smiling every second possible! We will start introducing new routines in hopes for Livy and I's departure to not be so hard on us all! We ask that you continue to share Livy's journey as this is considered "a rare disease", but only because it is misdiagnosed everyday! Many times once it is diagnosed its too late and major organs have been affected in which there's no reversal! The only way to fight against this is to raise awareness! I have said it before and I will say it again! If you have or know a baby/child that isn't getting better after a cold/infection or has random fevers advocate for more and more testing to be done! I by no means am an expert, but I can share Alivia's story to serve a purpose for anyone with questions regarding HLH syndrome.
We are so grateful for all the support from our community, friends and family that have shared, continue to pray for all of us as well as their generous donations! You all are making it a reality and possible for Alivia to get care so far from home as well as helping us through this time as we are torn between being there for her, but still needing to take care of financial responsibilities!
Below is a link for the GoFundMe page, as well as Alivia has an account in her name (Alivia Rae Colin) with Oliver and I both on it at the University of Iowa Credit Union that has been established to help with all the costs associated to saving her life.
https://www.gofundme.com/livy-strong
XOXO
CeeCee
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