Liam's HLH Journey

I am truly blessed. I have nothing to complain about.
As I was laying Liam down to sleep I started to think about how he must of felt at 28 days old. His life had just begun but he would now have to fight for it. I thought he must of been so scared there was no way to tell him what was going on instead you just had to hold him and hope that was comforted. He was so brave and strong. He was so lucky to have survived that HLH flare.
Then Liam now faced another hard road he would be getting chemo (that’s a hard word for a mother to take in). I have no way of knowing how that made him feel. Im sure it was not very good but he kept on smiling and fighting. He also faced the risk of getting sick and it being very serious due to his very low counts. Steroids were also part of his many medicines that would be given to keep Liam alive. They are pure torture Liam was beside himself. There was no way to comfort him. I again can’t imagine how he must of felt. His first round of treatment lasted 8 weeks. Which ended November 28, 2010. What a relief that was. I began to grasp the thought that he was cured. Hesitant to that thought I held my breath.
December 26, 2010 Liam started throwing up. We panicked and rushed him to the hospital. They did a number of tests and kept him over night for observation and thought it was just a bug and sent us home. The thought of it being a relapse of HLH haunted me. 3 days latter he starts throwing up again. This time we kept him home and just watched Liam very closely. I could not shake the feeling deep in my soul. Two days later Liam spikes a fever the doctors are still not convinced that it is a flare of HLH. I insisted that Liam be seen in clinic. By this time my baby boy was getting sicker quickly. I felt so helpless and at the same time realizing how much we have no control over what god has planned for us. They admitted Liam to the hospital and due to the genetic testing not being back yet they were not going to start treatment until the did a bone marrow biopsy and blood work to prove it was HLH again. I felt like I was in a sound proof room screaming at the top of my lungs. I knew Liams HLH was back I felt it in my soul. The thought of him lying there getting sicker by the second was pushing me to the edge. I convinced them to at least start the steroids. The thing is they cannot start treatment with out evidence which is great but when you know your child has HLH the quicker they start treatment the better the results. I would look at Liam and not know what to feel. I knew that HLH could take him from me at anytime. I just wanted to fix it or take his place. I also felt like he would look at me like why are you not helping this pain go away? He must of been so scared. His fever continued for a few days and I prayed.
Liam now faces another round of chemo and steroids he is only four months old. We also now are struck with the reality that Liam would need a life saving bone marrow transplant. There is no way to prepare yourself for that kind of news.
We also faced the possibility of our other three boys carrying the same gene abnormalities as Liam. Which would mean they too would need a bone marrow transplant. They did the genetic testing on the boys and they all have one HLH gene but Liam has two. So they should never be effected by HLH.
Liam got a Hickman put in for transplant I had to hand my four month old over to a stranger and watch them walk away through doors that I could not follow. I hoped Liam knew I loved him more than words could explain.
Transplant. I watched them make Liam so sick. Liam never stopped fighting and inspiring. There are not words to explain what he went through. I’m just thankful he will not remember it. We will but that is nothing compared to what he has been through. I never thought someone could make it through something like this. My little warrior has and so many others. I am so humbled by anyone that fights HLH. They have a inner strength that leaves you in awe. It makes you realize anything is possible. There is nothing out of your reach.