One mother's memory of her son's journey with Hemophagocytic Lymphohistiocytosis. Though 5 years has gone by, she still recalls every detail like it was yesterday. This is Anthony's story.
Anthony was born February 20,2008 in Spokane Washington, He lived in the hospitals their most of his first few months, He was flown to Seattle Children's in May 2008 and because of his family's situation became a foster child....He sat in Seattle Children's fighting for his life and about 3 days after coming to Children's they discovered that he had HLH,and immediately started Chemotherapy, He was crossed typed for a BMT. The nurses and doctors became his family for 4 weeks.
We had been wanting another Foster baby and their were many we could of chosen, Healthy ones, twins and one Named Anthony, I had kept asking about him and our Social Worker wasn't to keen on us taking him because he could die, I remember telling her...Don't protect us...He needs a Family...So we had it all set up so on June 27, 2008 John and I got to walk into Seattle Children's to meet this little tiny baby that we instantly fell in love with. We started staying the night with him on July 1,2008.We would take turns and didn't know how this would all work out. Who would take care of our boys and Lindsay at home, But somehow I kept hearing ...I have this handled. We thought we were going home on July 5,2008 but Anthony got really sick and his electrolytes were totally out of whack and so we stayed in the hospital for another 3 weeks but were back in 3 days later. I remember the nurses smiling when we came back in..Just because they missed their baby!!!Anthony wasn't just our baby he was the nurses, cleaning crew, security and doctors baby. Anthony was in and out of the hospital with several infection over the Fall and Winter time.
In November 2008 Anthony's Birth mom had given us permission to adopt him, It wasn't that she didn't love him but that she knew he needed the medical attention and we would do a open adoption with her. We spent hours on the phone, she would talk to him, we sent pictures, Christmas presents and she could still be apart of his life. So on May 14,2009 we adopted Anthony over the phone with the judge, He was too sick to travel to Spokane and we named him Anthony Wesley James!!! He was our gift from God and we now had to give him back to God.
So in June 2009 he was dedicated by Pastor Deryl Bell and we had given our gift back to God. Anthony was suppose to enter the hospital for his Bone Marrow Transplant on June 23,2009 as always Anthony missed his nurses and he got really sick with a Blood Infection on June 22,2009. He cleared that and had received his Life saving transplant on June 23,2009. He was so sick and it wasn't easy watching the one you love fight so hard, He was finally HLH free and in full remission and we got to go home the end of August 2009.
We would have many more blood infections and a lot of fighting what is called Graft vs. Host disease of the skin, and gut. He was always a fighter and we got to stay home for the holidays and most of the winter. In March 2010 we were admitted for GVHD and were in the hospital for 4 months. In that 4 months Anthony had many many blood infections, and was in ICU for almost 6 weeks for clotting issues and we were told that we were going to lose him. The doctors called the top Hematology Dr's in Denver and they put Anthony on what we call a miracle drug Faraparonox.It meant a shot 2xs a day but it would keep Anthony alive. We thought that everything would be great and we would have a healthy boy to watch and raise. Anthony finally got to go home after 4 months in the hospital...He got his PIC Line out on Sept 9th 2010.
On September 16th Anthony wasn't feeling well at all and as I was praying I looked in his eyes and said "God if he is tired its ok to take him" little did I know that I will never forget that prayer.
September 19th would be the last time John would take him through the doors of Seattle Children's, We were in SCCA and they tried 11 times to get a line in him, they moved him to ICU and he went into Cardiac arrest in my arms. The doctors took him and worked on him for what seemed like eternity knowing that organs had probably had taken a beating and were shutting down.
We went the next few hours not knowing if he would make it, we had family and friends coming to sit with us. We prayed and had our friends, family and Histio family praying that a miracle could happen.
The words that no mother, father or sister should ever hear is there isn't anything more we can do for your loved one. The pain in the doctors eyes. They had all watched him grow up there. This wasn't the outcome we had all wanted.
We moved Anthony down to SCCA floor the next morning, His Amy gave him his last walk around the floor, We had a room full of family and friends as we took him off the venilator.He was on his own timing as he was told to fight for 2.5 years. He lived for another 6 days.
On September 29,2010 at 12:56 am Anthony earned his Angel Wings. Our nurses and doctors were great and as we said good bye to what was our home for 2.5 years, it didn't feel right leaving without our baby. He was suppose to live forever but God had other plans to heal him.
Anthony was our gift for 2.5 years and to this day there isn't a day that I don't think about him, Wish he was here with us running around playing and laughing with his brothers and sisters. He showed us what Love is and how to love unconditionally.
There are many times I wonder if I would take such a sick child again and to this day I would say Yes with no hesitations. Anthony was here for just a short while but in that short time, he touched so many lives here and around the world.
Thank you Anthony Wesley James for letting us be your earthly parents and when I get to Heaven, we will play, laugh and be together but for now your brothers, sisters and other babies need me!!! I Love you to the moon and back! Keep watching over us.
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