T-cell A.L.L.

The next 24 hours was spent anxiously waiting for the results of different tests.  We met Dr. Michelle Vander Heyden in the Pediatric Intensive Care Unit, she was the first doctor to see James.  Michelle was young and confident and though we knew we were looking at a form of cancer,  she did not give us a false sense of hope, but her demeanor was somehow calming.

James was very sick, his body was rigid, he ran a fever and was crying a lot. His liver and spleen were inflamed and causing him stomach pain. It had been two weeks since we had first noticed that something was wrong and we were about to get some answers. Michelle told us that James had leukemia and described the disease as being "cancer of the white blood cells". Immature cells called "blasts" multiply in the bone marrow and crowd out the good cells and then infiltrate the organs. Now that we knew that it was leukemia, we had to find out the type and the sub-type.  This would involve more tests, including a bone marrow biopsy, which would involve taking bone marrow from James' femur with a very large needle (a very painful procedure). During the biopsy Kristen and the nurses held James (positioning him on his side on the exam table). He was screaming as they tried to position the needle.  The scene was intense and unbearable for me to watch.  I wanted to stay by James' side and be strong for him as well as Kristen.  I could tell by his screams that he was in agony, he tried to fight but they held him tight.  I told James "It's alright buddy" as I clenched my fists and watched in horror. I wanted to scream, I wanted to save him but I knew that I couldn't. Anger and sadness flooded my body so much that I could no longer watch and slipped out of the room.  I had never been more upset in my life. I sobbed in the hallway until it was all over. 

Hours later Dr. Vander Heyden concluded that James had Acute Lymphocytic Leukemia (A.L.L.) and the sub type was called T-cell. He was considered "high risk" (as opposed to "standard risk") because of his age and his high white blood count. Our first question was survival rate, we wanted to know what percentage of children survive with this type of diagnosis I recall the statistic being somewhere around 70%, however we did not understand that figure was based on a 5 year survival rate. We held on to the 70% hope rate as we began our journey.

Our Baby Boy Is Diagnosed With Cancer

The next day the pediatrician arranged for us to see a specialist in Worcester, MA.  Although we were concerned as to what exactly was going on with Mr. James, we were not panicking. The ride in to the city was nothing more than light hearted conversation  regarding James' condition.  

We arrived at UMass and checked James into the clinic. We were then escorted into the exam room.  Dr. Moriarty began by ordering tests on James' blood work. During the examination he seemed to be paying close attention to his abdomen and to the swollen areas in and around his neck and shoulders. We were both asked a series of unusual questions about our medical histories. Questions seemed to revolve around immune deficiency disorders, as well as HIV. Though there was nothing in our histories that was out of the ordinary, his line of questioning raised our level of concern.  Dr. Moriarty completed the exam and excused himself from the room. 

 Kristen and I discussed our concerns regarding the questions he had asked. We began to wonder what kind of news Dr. Moriarty was going to give us when he returned. The news was devastating. "We are looking for a tumor" he said. My heart pounded, as I didn't want to believe what I had just heard. I felt as though I had just been hit with a baseball bat. My face went flush immediately and I responded with "Do you mean cancer"?!! The answer was a a resounding "yes". We both began to panic.  Kristen began to ask several questions, as if she were trying to change his diagnosis or sway his decision.

 The rest of the conversation was a blur, I just remember a feeling of utter helplessness. I made a phone call to my parents. I broke the news first to my mother.  Her reaction was shock and disbelief,  and she suggested that we get a second opinion.  As anxious and upset as I was, I tried to calm her worries and remind her that we still didn't have all of the details. I asked her to pick the girls up that afternoon from the bus stop, and to have them pack an overnight bag to stay with them.  James would not be going home that night.

James Is Born

In 1987 I married my high school sweetheart Kristen. Together we had two beautiful daughters, Jessica and Heather.  Jessica was thirteen years old and in the eighth grade, Heather was ten years old and in the fifth grade. We did not have any plans to have more children, as we had been married twelve years, and to say the least, the marriage had been challenging. In May of 1999 we were shocked to find out that Kristen was pregnant. News of the pregnancy came with mixed emotions.

On January 17th, 2000, James Jordan Darling was born.  James' birth seemed to erase all of the issues that we were facing in the marriage. Not only was James beautiful and healthy, but he was the first boy (on both sides). My two sisters, Jennifer and Jayne, both had daughters, as well as my sisters-in-laws (Rebecca and Heather). James was the first boy, and the only grandchild that would carry on the Darling name.

 Everything was happy and normal those first several months. James was breastfeeding, he had a hearty appetite, slept well, and by all accounts was a healthy baby who loved his binky and blanky. The weekend of October 14th we noticed that James seemed to be coming down with what we assumed was a cold or the flu. The glands in his neck and shoulders seemed swollen, he was extremely fussy, and we had trouble getting him to sleep at night. I was concerned that we would not be able to get him in to see his pediatrician since it was the weekend. We decided that it was best to bring him to the Emergency Room. We explained James' symptoms to the emergency room physician. He quickly examined James, and did not seem overly concerned. He speculated that he may have some sort of virus and advised us to "just let it run its course".

Several days passed, and James wasn't any better. In fact, he was becoming increasingly worse. On October 19th (a Thursday) my grandfather passed away. He had been a great friend to me as well as a mentor. He had grown up during the depression and was extremely frugal with his money. My grandfather would buy properties (fixer-uppers) and rent them, or sell them for a profit. He had several small wooden barrels full of nails that he had collected over the years. He used to tell me that one day he was going to help me build my house, and that he had the tools and all the nails that we would need. While on his death bed, he told me "Jim, I'm not going to be able to help you build your house" as tears streamed down his face. All I could say was "that's ok gramp, you just rest." I was so sad to see him go but I was also grateful that he died before knowing that James would eventually become very sick with Leukemia.

 During the week of my grandfather’s funeral, James' condition worsened. He began having night sweats, which raised our level of concern. We had another follow-up appointment with James' pediatrician. He noticed some redness in James' ear, and thought that it could be a bacterial infection. He advised us to give it the weekend, and if he wasn't any better by Monday to call back and make another appointment.

The weekend came, and we ended up taking James back to the ER (once again during the night). James had woken up screaming, his body language made it clear that the pain was coming from his abdomen. The same emergency room doctor would examine him. We again explained James' symptoms, this time adding the night sweats and the fact that he was in agonizing pain. His explanation was similar to the first,"he had an infection." This time he prescribed an antibiotic and left the room. Kristen and I were frustrated with his examination, as well as his diagnosis. We both felt that he had not paid enough attention to his abdomen (where the source of the pain seemed to radiate). We called the doctor back into the room and we vented our frustration. We told him that we were not satisfied with the exam and wanted him to re-examine James. He obliged, but the diagnosis was the same. So we once again returned home with our son still in pain.

 The morning, October 23^rd, (a Monday) we buried my grandfather. I was asked to say a few words at the service. I spoke of all of the fond memories I had of my grandfather, all the while, James was crying. Kristen took James to the foyer of the church to try and console him. By the time I was able to join her she had already made the phone call to the pediatrician. She left the service and took James home while I attended the burial.

(picture above was taken around the time that we suspected James may have the flu/cold - 9mo.)

James Jordan Darling

James Jordan Darling was diagnosed with leukemia (Acute Lymphocytic Leukemia - A.L.L.) at the age of nine months.

On Christmas morning of 2005, James passed away at the age of five.   I am his father, James Charles Darling.  I created this blog with the hopes of being able to share the story of his life.  From birth, and the joy that we felt as parents, to diagnosis, remission, relapse and ultimately his passing. I remember the feelings of absolute shock, helplessness and fear of what was to come the day he was diagnosed.  I had no idea how our lives were about to change.

My hope is to reach parents/families struggling with the loss of a child, and even those who are in the beginning stages of diagnosis.

In the almost six years that James was with us, he taught me many valuable lessons about love, laughter, family, even humility.  Despite all of the challenges that we faced as a family, I hold dear to the many beautiful memories that we made during his precious time with us. 

I hope that this blog provides hope, and is an inspiration to whomever stumbles across my page.  I can only provide you with my perspective of what it is like to experience such adversity, and how I was able to overcome, but never forget. I hope that when James smiles down upon me that he is proud of me and who I became, and that his death was not in vain.