I wanted to take a few minutes to just breathe and gather my thoughts and update you all on what today brought to our family, so here goes.
To all my mama friends out there, LISTEN to it! TRUST it! Don't EVER stop letting it guide you in being your children's best advocate! That mama's instinct we have is the most amazing REAL LIFE super power! Embrace it ladies and above everything else in this crazy, cold, and scary world be proud of it!
This morning we got a call, you know that one I have been waiting for. Nine weeks ago our Little Livy had a bone marrow biopsy. We didn't want this to happen so we pushed back, but we needed to check this off of the list before her designated treatment regimen started. It sucked to say the least! We went through all of the emotions 9 weeks ago of feeling so heartbroken, mad, helpless and to be honest, quite selfish as well. Why us? Why our baby girl that IS PERFECT TO US? She looks great, how can this be? Today we went through it all again....just a lot more intensified. We accepted the news that our sweet Alivia Rae Colin has Primary HLH Syndrome. Get ready because this is very complex and we still have so many questions unanswered as Oliver, Ameliah and I went through more testing today!
What is HLH syndrome? In layman's terms, Alivia came into contact with a, at this time unknown virus or infection at the beginning of October. Her body fought it off to keep her healthy, but once that virus/infection was dead her immune system didn't calm down as any "normal" child's would have. Special cells in her body started attacking all the good things in her body leaving her very, very sick. The only sign she had was a fever, which my mama's instinct guided me to keep pushing back for more and more testing to solve this problem. I accepted the "it's just a virus, go home and rough it out, let us know if anything worsens" once and never again! There is only one hospital in the US that specializes in HLH syndrome, but we have faith that the University of Iowa will take good care of her, so for now she will be treated there unless things take a turn and they decide its best for her to go to Cincinnati Children's hospital.
What is the cure or next steps? No cure. Just a procedure that has a 50/50 chance of working. So a lot to come. I am still trying to process it all. As I stated previously, we went through testing today and will receive results within 2-3 weeks to determine if we can be donors for Livy. She needs a bone marrow transplant. She will need to undergo Chemotherapy and start taking many medications once we find a donor to suppress her immune system in hopes for it to accept the new immune system (that's what a bone marrow transplant does) and keep her healthy as life moves on. Meli has the highest chance of being able to match at 100% and Oliver/I are guaranteed to match at 50%. Although I would be an absolute last resort as I nurse her and someone needs to be able to care for her throughout all of this. We've been told to expect to be in the hospital multiple weeks after the transplant as she is so little and so unique. She doesn't and hasn't ever looked like an HLH patient the only thing guiding them to this disease were her lab results and uncontrollable fever.
For now while we wait for the results on our family being her donor, I will be taking advantage and making the most of every second with my family. It is very bittersweet! I wanted answers SO BAD...just not these ones! As I sit here and sob my eyes out, as Meli and Oliver are at gymnastics and Livy snoozing away, I am trying to find the good in all this. It could be worse...we get to be home for the next 2-3 weeks, but then we are going to go through hell for the next few months= NO POSITIVE. I am trying so hard. I feel like I am hiding this terrible news every time her beautiful, green eyes look at me! How do I break it to my 6 year old when those results come back in 2-3 weeks if she is a match that she needs to go through a surgery procedure to try and make her baby sister healthy again? What if it doesn't work. There is a 50% chance that it will work, so is this a situation that I need to look at the glass half full? I cant...not right now. I am so mad! I am so sad! How could the God that I believe in put my family through this? But oh yea...everything happens for a reason, so I will be strong and pray every second that I am not busy loving on my girls for his plan to be the right one! Today Meli seen me cry and be so upset more than she ever has in her 6 years of life....this isn't fair at all!
Thank you for being my outlet and my support system! This is a way for me to let you all in on what is going on as well as for me to deal with my feelings through this process.
Please pray for our family, Little Livy but also for all of those involved in her medical care. We need them all to show up each and every day ready to kick ass with Little Livy through all of this!
I will update as much as possible, but again my priorities these next few weeks are to let Livy be a 7 month old baby and enjoy our family time as much as possible.
Sending lots of love to everyone and remember to trust and follow that mama instinct of yours,
CeeCee
To all my mama friends out there, LISTEN to it! TRUST it! Don't EVER stop letting it guide you in being your children's best advocate! That mama's instinct we have is the most amazing REAL LIFE super power! Embrace it ladies and above everything else in this crazy, cold, and scary world be proud of it!
This morning we got a call, you know that one I have been waiting for. Nine weeks ago our Little Livy had a bone marrow biopsy. We didn't want this to happen so we pushed back, but we needed to check this off of the list before her designated treatment regimen started. It sucked to say the least! We went through all of the emotions 9 weeks ago of feeling so heartbroken, mad, helpless and to be honest, quite selfish as well. Why us? Why our baby girl that IS PERFECT TO US? She looks great, how can this be? Today we went through it all again....just a lot more intensified. We accepted the news that our sweet Alivia Rae Colin has Primary HLH Syndrome. Get ready because this is very complex and we still have so many questions unanswered as Oliver, Ameliah and I went through more testing today!
What is HLH syndrome? In layman's terms, Alivia came into contact with a, at this time unknown virus or infection at the beginning of October. Her body fought it off to keep her healthy, but once that virus/infection was dead her immune system didn't calm down as any "normal" child's would have. Special cells in her body started attacking all the good things in her body leaving her very, very sick. The only sign she had was a fever, which my mama's instinct guided me to keep pushing back for more and more testing to solve this problem. I accepted the "it's just a virus, go home and rough it out, let us know if anything worsens" once and never again! There is only one hospital in the US that specializes in HLH syndrome, but we have faith that the University of Iowa will take good care of her, so for now she will be treated there unless things take a turn and they decide its best for her to go to Cincinnati Children's hospital.
What is the cure or next steps? No cure. Just a procedure that has a 50/50 chance of working. So a lot to come. I am still trying to process it all. As I stated previously, we went through testing today and will receive results within 2-3 weeks to determine if we can be donors for Livy. She needs a bone marrow transplant. She will need to undergo Chemotherapy and start taking many medications once we find a donor to suppress her immune system in hopes for it to accept the new immune system (that's what a bone marrow transplant does) and keep her healthy as life moves on. Meli has the highest chance of being able to match at 100% and Oliver/I are guaranteed to match at 50%. Although I would be an absolute last resort as I nurse her and someone needs to be able to care for her throughout all of this. We've been told to expect to be in the hospital multiple weeks after the transplant as she is so little and so unique. She doesn't and hasn't ever looked like an HLH patient the only thing guiding them to this disease were her lab results and uncontrollable fever.
For now while we wait for the results on our family being her donor, I will be taking advantage and making the most of every second with my family. It is very bittersweet! I wanted answers SO BAD...just not these ones! As I sit here and sob my eyes out, as Meli and Oliver are at gymnastics and Livy snoozing away, I am trying to find the good in all this. It could be worse...we get to be home for the next 2-3 weeks, but then we are going to go through hell for the next few months= NO POSITIVE. I am trying so hard. I feel like I am hiding this terrible news every time her beautiful, green eyes look at me! How do I break it to my 6 year old when those results come back in 2-3 weeks if she is a match that she needs to go through a surgery procedure to try and make her baby sister healthy again? What if it doesn't work. There is a 50% chance that it will work, so is this a situation that I need to look at the glass half full? I cant...not right now. I am so mad! I am so sad! How could the God that I believe in put my family through this? But oh yea...everything happens for a reason, so I will be strong and pray every second that I am not busy loving on my girls for his plan to be the right one! Today Meli seen me cry and be so upset more than she ever has in her 6 years of life....this isn't fair at all!
Thank you for being my outlet and my support system! This is a way for me to let you all in on what is going on as well as for me to deal with my feelings through this process.
Please pray for our family, Little Livy but also for all of those involved in her medical care. We need them all to show up each and every day ready to kick ass with Little Livy through all of this!
I will update as much as possible, but again my priorities these next few weeks are to let Livy be a 7 month old baby and enjoy our family time as much as possible.
Sending lots of love to everyone and remember to trust and follow that mama instinct of yours,
CeeCee
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