Christian Eilam Sorenson was born August 2, 2002. He looked fabulous and perfect, it was hard to believe that he had a fatal heart defect known as Hypoplastic Left Heart Syndrome (HLHS). Due to his condition and his unique anatomy he needed a heart transplant, which he received at nine days old on August 11, 2002.
We were told this would give him the best chance at a normal life. Christian recovered and began to thrive. For the next 31/2 years, Christian, had few issues and grew strong and turned into a beautiful spirit. During this time, Christian was on the lowest dose of immune suppression medication and seemed to be thriving well and was full of joy all the time. Life was an adventure and he lived like no one could.
During a routine biopsy, it was discovered that he was in the beginning stages of heart rejection.
This was the pivotal point where his spirit and strength truly began to show. Although hospitals were not the place he wanted to be; he was courageous and would find reason to relax and cooperate.
The treatment for rejection is aggressive and brutal and really took its toll on Christian. The IV meds were heavy. I, Christian’s dad, vividly remember Christian and I walking around the old Denver Children’s Hospital trying all the doors to find an exit as he told me “we have to get out of here.” Christian was serious and I truly believe he would have walked home if I would have let him. God only knows, maybe we should of left and put it all in God’s hands.
As parents, we wonder to this day if Christian did truly have a rejection that needed this kind of treatment. The treatment did its job, but left Christian with even more damage to his heart. From this point on the damage to his heart continued to worsen. We brought a healthy and strong child into the hospital and left with a very sick child. After all the IV meds that were given that week we began a new oral medication. It took Christian two months before his stomach or his spirit could stop from gagging and throwing up. He lost almost 5lbs and it was about 2 1/2 years before he would gain that weight back. At the time he was looking pretty thin, but wanted to start pre-school and so he did. I, Christian’s dad, know for sure if I were him I would have elected to stay with mom. His first year of pre-school was a very good year.
During pre-school he met friends and even had a little shy crush on a girl.
In the spring of 2007, it was noted that he was not growing and that he had been throwing up at least once a day. This vomiting ended up lasting for months. The doctors ran medical tests and discovered a mal-rotation or a twist in his intestine, which would require surgery. At the same time the doctors discovered enlarged lymph nodes in the area and ran further tests to check for Post-Transplant Lymphoproliferative Disease (PTLD).
This was the first we had ever heard of PTLD and didn’t exactly understand its severity.
Christian’s surgery for the mal-rotation in his intestine was a success and the biopsy for PTLD was negative. “Awesome! Praise the Lord!” It was evident that Christian was feeling better and he also began putting on weight.
In the fall of 2007 we, mom and dad, enrolled him back in pre-school but later pulled him out and he joined his friends in kindergarten. Although he was on the young end for kindergarten, he was too smart for pre-school. He excelled in kindergarten and loved every minute of it! Christian really had another good year in school and finished just above the middle of his class. We were very proud of him! That following spring the “Make a Wish Foundation” sent Christian and our family to Orlando, FL, for “Give Kids the World.”
That experience was unbelievable, “all you who have donated or volunteered thank you!” Christian and his sisters loved the village! Christian met the Red Power Ranger whom he idolized and Minnie Mouse who he thought was beautiful. Christian then saw Arial and he whispered to me, “Dad, she is real.” Classic, I thought, a real mermaid! I loved it! Later that year “Make a Wish Foundation” had a Go-Kart Racing event at Bandimere Speedway. I was amazed they had karts small enough for 5-year-olds. Not realizing this we didn’t send him for the instruction class, which would have helped! For your information, two people in full helmets riding go-karts cannot hear each other no matter how loud you scream “slow down!” He flew and when I would try and catch up to slow him down, he would just go faster, not wanting to lose. Yes, Christian was awesome; all that time with the driving wheel video game apparently paid off! Except he only understood two flags, green and checkered. As parents, we could not have been so scared and proud at the same time.
It wasn’t long after the go-kart event that Christian began to feel “yucky.” We took Christian back up to the go-cart track a couple weeks later, but Christian was having trouble holding the peddles down. One month after his 6th birthday in 2008, Christian was diagnosed with Post-Transplant Lymphoproliferative Disease (PTLD).
The doctors found several masses in his lungs and surgically removed a mass for a biopsy. Christian was a trooper through this surgery as it was very painful for him and he was extremely sore for a week. The biopsy was positive for PTLD and the PTLD needed to be treated immediately. The chemotherapy began and the doctors explained that Christian would likely be sick and probably lose his hair. Sick! Since chemotherapy started the doctors stopped all of his oral anti-rejection medications. “I think he felt better on chemo and so did he.” Amazingly enough he never lost all of his hair and coped with chemo better than anyone could have expected.
He started first grade in the fall of 2008 and only really missed school on “chemo day.” He was doing well and finished his last chemotherapy treatment the end of December, 2008. He was then was placed back on his oral immune suppression medications in January of 2009.
Not too long later, it was discovered that the cancer or PTLD had come back. This meant more aggressive chemotherapy treatments, which would require Christian to be hospitalized one week at a time per treatment. During this time, Christian, at 6-years-old, learned to swallow pills. This helped Christian because drinking the pills that were crushed or mixed with anything tasted horrible and was a battle for him to comply with taking all the pills at all hours of the night. So he considered a request from a nurse to try swallowing them hole to avoid the taste. He took meds around the clock! These were hard weeks and he missed the family all together. He missed his sisters and loved it when they visited him. Initially, the first week of the aggressive chemo went great, but then he started a fever. It turned out that he had a fungal blood infection from his own body due to his white blood counts being at zero. At this point the doctors didn’t think Christian would survive and suggested signing a DNR (do not resuscitate) clause. The doctors felt Christian’s heart was too weak; pumping at 170 beats per minute, and didn’t think his condition was viable to live.
Due to the harshness of the chemotherapy drugs, his heart condition continued to deteriorate. Christian’s heart was 3x the size it should have been at this point, but Christian did it! He took all his pills, drank his drinks, got poked, woke up all through the night for meds, slept with wires and pressed on! He would do all that was required diligently so he could go home and be with his family. Christian would laugh, tease, play, argue, and encourage his sisters. He loved jumping on the tramp with his sisters and would even let his little sister go first. He loved school; reading and playing with his friends. He loved riding his bike, playing Lego’s, blasters (pretending to be Star Wars characters), loud cars & motorcycles, monster trucks, tractors, planting flowers with mom, fixing things with dad, all the holidays, going to church to sing, and when he played video games he always wanted to defeat the bad guy and save the princess - just being a boy. No one knew, not even the doctors, how he was living at the level he was able to achieve! Christian’s determination, strength, and spirit showed through and through.
Christian was so determined to beat PTLD so he could get back on the heart transplant list for a new heart. Christian knew, as he always proclaimed, “Jesus was holding his hand” and I, Christian’s mom, do believe the Holy Spirit was with him at every step along the way.
We miss you dearly son; we are so incomplete now….
It was such a shock, Christian woke up the morning of July 1st, 2009, for breakfast and was so excited that mom bought him a new box of his favorite Rice Chex cereal (the night before). He then picked out his favorite vacation Bible school shirt because it had a cross on it and told his dad that morning “Jesus was going to fix him.” He then played outside with his kid lawnmower, following his dad around the yard while he actually mowed the yard. After cutting the lawn with his dad, Christian came in the house for a snack of raspberries and water.
He then took off his clothes, like always, and started watching the Lion King with his sisters. This was a great normal day that turned so tragic moments later.
No parent ever plans for their sweet child to go to Heaven first. We never lived thinking Christian would die; it wasn’t an option for us. Now we all live with the stinging burden of sadness, emptiness, and longing for Christian’s smiling face, contagious laugh and sweet spirit. Although he is always with us; our hearts are now gone with him. As parents it hurts so much to lose our precious Christian and it hurts so much looking into the eyes of his sisters, Chloe and Delaney, knowing there is nothing you can do to take the place of their only brother, Christian. The only hope we all live with is knowing that we will be reunited with Christian one day when we are called home to Heaven.
