Andrew Preston Akin 6/5/07 – 9/5/09

Speech Given by Kristin (Andrew’s Mom) at Andrew’s Service

June 5, 2007 Andrew Preston Akin was delivered via Caesarean-section. We were thrilled and so excited that Matthew’s little brother and our other son was finally here. Justin and I had made a conscious decision to bring another child into our family and now it was complete. Andrew was perfect:10 little fingers, 10 little toes and ironically he weighed the same as his big brother-7 lbs, 9 ozs. Life started out as it does for most families with two little one’s. We were busy trying to keep up with a toddler and a new born. Honestly, thinking back I really can’t remember much of life with Andrew before that dreadful day, August 16, 2007. What had started with some sporadic vomiting a few days before came to head in the Pediatric Intensive Care Unit of St. Louis Children’s Hospital. I stood there alone as Justin was home with Matthew, terrified, trying to understand what was happening-Andrew was in liver failure and had a 50% chance of surviving through the night. However, within 24 hours Andrew was stable and able to be moved out of ICU and onto the general medicine floor. That was the first of many amazing feats he overcame.

Andrew’s journey to beat HLH was long, exhausting, painful, terrifying and ongoing. It took everything he had to keep up with all that we threw at his sweet and precious body. Yet, most of the time you would never know that he was fighting for his life. He smiled, laughed and exuded happiness. He was more than just surviving he was thriving. But how could this be? How could a baby be this happy, laugh this much, make doctors and nurses smile after a miserable day, in spite of chemo, steroids, infections, complications and the bone marrow blues? It is easy-God made Andrew special and I don’t say that lightly. Of course as his Mother and biggest fan it might sound biased but really anyone who met Andrew knows this to be true. He had a way to brighten the darkest moment with that contagious smile and infectious laugh. I can honestly tell you every time I would break down and cry while holding him he would do something so silly that I would immediately break into laughter, wiping away my tears, feeling selfish for crying in front of my son- the one who was going through hell.

While most people pity me because my son died-please do not. I am the luckiest Mom in the whole world. God gave me this child to carry and bring into our family. He allowed the opportunity to be at his side almost every day of his entire life. Andrew and I slept together, bathed together, ate together and took on HLH together. While I had to see him suffer so often and go through unbearable pain I also got to see him laugh and smile more than most. Andrew taught me to dig down deep within myself to find things I would of never known I had. He taught me that making others happy is a priceless gift as he managed to make people smile every single day of his life. Most importantly, he reminded me that there is nothing so serious that a little laughter can’t help.

Throughout Andrew’s long and arduous journey whenever he hit a major speed bump we always told him-if you are ready to go, then just show us and Mommy and Daddy will let you go. But if you want to keep fighting then show us and we will help you through it. And with each and every event, while it would be serious and terrifying, Andrew always seemed to make a quick and mighty turnaround. However, that Friday night as he lay there on the ventilator I leaned down and again told him that it was up to him. That we loved him endlessly but could not and would not ever know what all he had been through. The remainder of the night he got progressively worse and deep down I knew. By the next morning I asked the doctors in rounds if he was dying and they said no, not yet, but somehow I knew he was.

In the days following Andrew’s death one of our doctors said one of the most poignant things I have ever heard. She said, despite our ability to monitor most of all bodily functions, we have no way to monitor the soul. Andrew Preston Akin was pronounced dead at 11:55 am Eastern Standard Time but really that is just a technicality. With every person that has joined the National Marrow Donor Program, donated blood products, deepened their relationship with Christ or better yet found Him, volunteered their time, loved their kids more, complained less, laughed more-then Andrew continues to live on in each of us. The question really is…if you or I died today have we encouraged the kind of brave and courageous life that Andrew did in just 27 months?

Speech Given by Justin (Andrew’s Dad) at Andrew’s Service

Thank you for coming. It really means a lot to us. This is a unique situation since most of you never got to meet Andrew Preston Akin. So what can I tell you about my son? Well, I can tell you that I’m so extremely proud of him. What he went through in his short 27 months of life simply wasn’t fair. Having one bone marrow transplant is amazing but having three is simply unheard of. If you look up the name Andrew in the dictionary it shows the definition as Brave and Courageous and that is exactly what he was.

Fortunately, God gave us the ability to choose how we react to every situation and Andrew chose that no matter how bad things were he was going to live each day full of laughter and smiles. And that isn’t something you see in the bone marrow transplant unit of a pediatric hospital. These kids are going through hell and laughing hysterically every day just wasn’t normal. Many times in Cincinnati while we were having rounds with the doctors I would prop open the door just a few inches so everyone in the hallway could hear him laughing. I was so proud of him and unfortunately that was about all I could do to show him off to anyone. I’ll never forget the night in Andrew’s hospital room when he pulled the central line out of his chest. I jumped out of the chair/bed when I heard a ripping sound and turned on the lights to find him playing with the plastic tubing that had been sewn into his body. Then when all the Drs. and Nurses came running into the room he was laughing hysterically and playing peek-a-boo with his blankie. There he was with an open hole into his chest just laughing at the situation. It was like he did it just so everyone would come running into his room for a playdate. Numerous Drs. and Nurses told us that Andrew was their favorite patient of all time and one in Cincinnati even appointed herself as the President of his fan club.

From the moment he was born Andrew truly idolized his big brother Matthew. Oh he loved him so so much! Whenever Andrew would be going through a difficult procedure at the hospital and would be crying I would put a video of Matthew on my phone for him to watch and the tears and crying would turn immediate giggles. There is one day in particular of Andrew’s short life that I know I’ll never forget. Andrew had been in Cincinnati Children’s Hospital for over three months before Matthew was able to come up and see him. The hospital had been on flu restriction but as soon as it was lifted Matthew and I drove to Cincy. Andrew was sleeping when we walked into the room but Matthew’s nonstop talking quickly woke him up and Andrew was so excited he started to hyperventilate. He truly couldn’t catch his breath! We sat him up in bed and he immediately stretched out his arms to give Matthew a hug. At one point Matthew tried to get away but Andrew wouldn’t let go. Kristin and I just stood there with tears streaming down our faces at the site of our two precious sons hugging and loving on each other.

At the beginning of this journey we named the CarePage “babyandrewakin”. It was like we knew that he would never be able move past that stage in his life. Many times I told Kristin I was worried that Andrew wasn’t going to live a long life. He was just so happy and I was worried that God had made him that happy because it was predetermined that his time here on earth would be short.

The whole story has yet to fully play out but Kristin and I believe that the greatest gift Andrew gave us was saving his brother’s life. Without us going to Cincinnati for Andrew’s third transplant we would have never known about Matthew’s mutation. The disease could have reared its ugly head and it could have been too late. The first time we ever met with Dr. Filipovich, the world-renowned expert on the disease, she said that finding the mutation in Andrew saved Matthew and that is the path that we are on. We don’t think the timing of everything was coincidental. Andrew got sick at the exact point when it was too late for us to stop Matthew’s transplant. A day or two earlier and we would have stopped the whole thing. But once Andrew knew we were moving forward with his brother’s transplant his work here on earth was done and he left us to go be with God.

One of the reasons Andrew was so happy was because every morning he got to wake up to the very best Mommy in the whole world. Kristin truly made the best out of a horrible situation. Whether she was giving him a bath, calling him funny names, snuggling him or turning his hospital bed into the Merry Marrow boat she made his time here on earth as great as it could possibly be and for that I’m eternally grateful. Those of you who know Kristin know that she is an extremely organized person and those skills came in extremely handy during this whole ordeal. If you want to know what Andrew’s White Count, Hemoglobin and Platelets were 649 days ago I know she could tell you. She has truly earned an honorary medical degree and one of the BMT Moms even labeled her the HLH Icon. It is hard enough to get through one bone marrow transplant and Kristin took our sons through four. I’m so thankful to have had her as my partner during this horrible situation. Kristin, thank you from the bottom of my heart for taking such great care of our sons and Andrew was never able to tell you with his words so I will for him. Thank you Mommy, I love you!

During those last minutes we promised Andrew that his life would NOT be in vain. We believe he was sent here to save Matthew and now we will take what we’ve learned to help other families who to deal with this horrible disease in the future and save additional lives. So far, we know of three people who have joined the National Bone Marrow Registry because of Andrew and have already been called upon to donate their live saving marrow.