It's been a long few days to say the least. It has been tough to "enjoy" our time and act like nothing is going on, when my mind is constantly observing and brainstorming questions regarding HLH syndrome. Have you ever felt like you are being forced to do something? Then on top of that you know that there are going to be domino like effects that happen because of that one thing that you were forced to do. That's exactly how I feel. My family and ultimately Alivia is being forced to go through this with no choice at all. I have accepted it, but still find myself feeling so angry. I have done some Christmas shopping and when I see people being so careless, rude and with no Christmas spirit at all I just want to go up to them and say would you like to take some HLH syndrome with your attitude today? Just to put into perspective that you may be going through a hard time, but you certainly are not fighting for your life at the age of 7 months.
Despite all of this, yesterday's appointments went very well! The doctors are beside themselves and don't understand, how or why. Her labs show that she is a "normal" child! This is the best she's been since September. Her anemia is pretty much normalized along with her ferritin! Ferritin is the HLH indicator and it is in the 100's! She has been in the 500-800 range as outpatient and they thought that was her "new norm"! She's eating lots, playing and enjoying life as a soon to be 8 month old (on the 30th). We are still waiting for results regarding Ameliah's possibility of being a match or not as well as who the carrier of the gene for this nasty disease, Oliver or I. This information will also be helpful in the future if/when we decide to have more children.
Once we are able to decide if Meli can be the donor we will be going forward with treatment. Where? We are not sure. There have been countless situations that have made us decide that it is best to go to Cincinnati for a consultation. I have learned from other HLH survivors and their families (thanks to technology and social media) that you want to be in the best hospital and have the team with the most experience taking care of your child with Primary HLH syndrome. We need things done the first time with no silly communication mistakes that delay Livy's recovery! I am working closely with Cincinnati now on getting in to meet the team and to ask many questions but ultimately to see what my mama instinct tells me. After this we will be making our decision. This will be huge, scary and completely overwhelming, but this is our new life. I've always loved and lived my life by this quote, "adapt and overcome". I wont be overcoming this anytime soon, but I certainly can adapt and do whatever I can to make it easier on my little Livy. We have also started to have conversations with Meli regarding HLH and how people save lives everyday. It's so heartbreaking to have to talk to her about this. "Your little sister needs someone to save her life and that just may be you" is what needs to be said but she's 6 and way more mature for her age so that's not going to work. We don't want the results to come back and her be completely blind sided that she needs to be the donor, but at the same time we don't want her to feel down about not being able to help her sister either. For now we have let Meli guide the conversations and will climb the mountain when we get there.
So for now, we will continue to enjoy our time as a family this holiday season. Meli has her Holiday Program on Friday that we CANNOT wait for! She is so so so excited and that makes our hearts happy too in the midst of all the heartache. She's lost another tooth (4th one) as Livy is getting HER FIRST TOOTH...who knew teeth could be so exciting as parents, from the tooth fairy to feeling gums any chance you get? HAHA Meli has also been having so much fun with our Elves, Bailey and Cailey! This really is the best time of the year!
Make it a good day and spread the love! After all you never know what someone else is going through and a simple gesture of a smile and 4 words of "have a good day" could be the motivation they need! I've added a few photos for you all to enjoy and see how fun our little Livy really is.
Sending lots of love and hugs to all our friends and family!
CeeCee
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