Nickolas was my first born and my only son. Nick was twenty-five years old when he was diagnosed with chronic myelogenous leukemia in May of 2008. Prior to that horrible day, Nickolas had always enjoyed good health. A few month before his diagnosis, he was starting to have some symptoms of what we later found out was severe anemia. He had been to the doctor for a regular physical (which was completely normal with blood work) in January of 2008.
After Nick was diagnosed, we began a whirlwind of hospitalizations, chemotherapy, and finally a bone marrow transplant in August of 2008. Everything happened so fast. Nick was VERY SICK when he was diagnosed. He was already in what they call “blast crisis” which is the final phase of CML. If CML is caught in the early phase, it can sometimes be treated by an oral chemotherapy drug called Gleevac. Nick actually went on the Gleevac after an initial ten day hospital stay. Nick’s white blood cell count was 40X the normal amount!!!! This is very bad and they had to kill off some of these cells with several rounds of “baby” chemo. His blood counts were so low, it is a miracle he did not pass out or have a stroke from all the numbers of WBC in his body. This high number of blood cells causes your blood to be like sludge and can cause you to have a stroke, or stop blood flow to your major body organs.
Nick quickly was referred for a bone marrow transplant. In hindsight, I now question our decision to move forward so fast with the BMT. I tried to get my son to look at other big transplant centers and get a second opinion, but, he did not want to be away from his girlfriend and his Dad and sister. Now I feel like this was the wrong decision. But, there was nothing I could do about it. Nick also asked the doctors if he could not just stay on Gleevac for a while and see what would happen. They told him his return to the chronic phase (the first phase) would not last long and that he should move forward with the BMT process as soon as a match was found. With great trepidation we started the financial and insurance applications and the search for a match began. Unfortuantely, Nick’s only sibling, his sister Sara, was not a match. Therefore, we had to go with what they call a ‘matched unrelated donor’ or MUD for short. Having a MUD is not the best choice because the match is always better with a “related” donor. On the other hand, Nick was blessed to have a match found so quickly. Literally within months of his diagnosis, Nick got the word that a match had been found. We barely had time to process all that was happening to Nick’s body and this horrible diagnosis of blood cancer, i.e. – leukemia, before we were tossed into the ring to fight a foe almost as formidable as the cancer.
Nickolas had his bone marrow transplant on August 27th, 2008. He spent over twenty-five days in the hospital having his body bombarded by chemicals and drugs that kill the body’s marrow system completely (and in doing so hopefully also killing the cancer cells as well.) Then he received the marrow of a stranger into his body. Luckily, the marrow donor had the same blood type, or else Nick’s blood type would have changed. Isn’t that strange? I never realized how upset I would be when I thought about how a part of my son would be forever ablated from his body and in it’s place would be the DNA/genetic material of another human being! Of course, we hoped that this marrow transplant would save Nick’s life. Ultimately, it seems the BMT did it’s job and Nick’s leukemia went into remission after several more battles with cancer cells found in his central nervous system, i.e. in his spinal fluid. Nick had to get chemotherapy into his spinal fluid through lumbar punctures (needle stuck into the back between the vertebrae of his back). In addition, he had to receive cranio-spinal radiation to his head and spine to make sure they got all of the cancer cells in his spinal fluid. That was just one of many horrible experiences that Nick had to endure during this fifteen month journey through hell.
After his BMT, Nick was discharged from the hospital in September of 2008. He had a rough couple months to follow with every complication in the book. He was losing weight and had no energy or stamina. There was so much going on I cannot even bear to repeat it all here. The big thing was that in late November Nick started with a cough. He continued to cough for eight weeks straight! I told the doctors over and over that something was wrong with him. Making a LONG STORY short, that was the start of my son’s lungs beginning to deteriorate. Nick died of severe and progressive respiratory failure. The doctors still could not give us a reason that this happened. Nick became so ill from November through end of February. No one would listen to us when we BEGGED them to pay attention to us. By early March Nick was so sick, he had to be admitted to the hospital again. On admission, they found his oxygen level was so low he had to go on oxygen mask so he could breathe. Before his BMT, Nick’ lungs were perfectly healthy! His breathing tests were above normal. Nick was hospitalized for fifty-eight days from March 9th, 2009 through May 5th, 2009. He was sent home for three weeks. He went home on oxygen with a wheelchair and a handicapped sticker because he could not walk even 20 feet without getting short of breath. His breathing was so irregular when he slept, I knew something was terribly wrong and yet, they sent him home. They didn’t tell us that this was the end. They didn’t tell us there was nothing they could do. They didn’t give Nick the chance to seek other medical care from other doctors who had more experience. They didn’t tell us to get Nick’s affairs in order or set up hospice care. They sent Nick home on steroids and he was getting special treatments to his blood to try and reverse what they thought was graft vs. host lung disease caused by the transplant. Nick was so frail and weak. He couldn’t do anything for himself, let along do anything fun (since he would soon be dead!) Nick continued to deteriorate over the three weeks he was home. It got to the point where his breathing was so compromised that he had trouble eating and breathing at the same time.
On June 5th, 2009 my son went back into the hospital for the last time. Nick spent seventy days in the hospital, the majority of which was spent on a breathing machine. That admission was horrible. Nick suffered so much from his lungs being completely ruined. Nick could not even sit up in bed, he could not eat, he could not use the bathroom or even a bedside commode. ANY activity would cause him to have what we came to call a “breathing fit” where he would feel so air hungry, he would get in a panic and he would need drugs to sedate him and get him calm. I watched him suffer like this for way too long. He went through a VATS procedure and an open lung biopsy, he had chest tubes, he had thoracentesis procedures, he had more CAT scans and bronchoscopy’s, swallow studies. He had to travel in this precarious condition all over the hospital with transport teams who had no care for the fragile state of his condition or his lungs. No one should have to suffer the way my son did. In the end, his father & I had to make the decision to take him of the ventilator and let him die. No parent should have to make this decision. Nick’s wonderful, smart, and intelligent brain was still 100% fine and yet we had to let his brain die because his lungs could no longer sustain life for him. He was leukemia free at the time of his death and that makes it all the worse.
The autopsy of Nick’s lungs showed the SEVERE damage of his lungs. There was nothing normal about what was going on in his lungs and had been going on for a long while! The pathologist told me NOTHING short of a lung transplant could have saved Nick! This only helps me in know that we did the right thing in ending his suffering. Nick had been put in a drug-induced coma for about one week prior to us taking him off the vent. Nick was having so much trouble breathing, he WANTED to be knocked out. It was horrible! Nick passed away quickly after the ventilator was removed. His lungs could not exchange air properly. On August 13th, 2009 I had to watch my son die! Nothing was as it should have been. I look back on that day and I regret how his end came and I am so angry about that. The whole thing was handled so poorly. I HATED EVERY MINUTE OF THIS THEN AND I STILL HATE IT TO THIS DAY. I am so angry about all of this. I have so many images of those hospital days that I cannot get out of my head. There are so many people who just did not care about my son! I fought so hard to save him. I feel like a failure to my son.
Nickolas was a wonderful, loving, intelligent young man. He had so much to offer this world. He was a chemical engineer and he gave of his time to help change things in this world. He volunteered with the Engineers Without Borders group and he had worked on many of their projects. When he graduated from college, he became a professional mentor with EWB. Nickolas had a wonderful girlfriend of four years. They were planning to get married and start a family some time in the near future. Nick was loved by so many. He had many friends from his youth, from school, from college, and from work. Nickolas was my best buddy. I know he loved his Mama. He always promised that he would take care of me when I got “old.” I miss my son with all my heart. The months go by and it makes no difference. My heart is forever shattered into a million pieces that will never be put back together again. I love you Nick. I love you more than a wagon full of puppies. Mom