It's been a very long time since I have used my blog. I guess FB kind of took over, but I think this may be the best way to keep those interested updated of current happenings.
I have severe whiplash - figurative that is. I've gone from 0 to 120 mph in just about 6 seconds, or so it seems. Two days ago I was cruising through a busy, full, contented, albeit stressful-at-times life of a mommy. Then I was hit from behind. I went from having a healthy active little boy who was enjoying swimming lessons and attending his first "big kids" science class to a little boy fighting for his very life. The diagnosis is what hit us from behind and sent us flying: T-cell acute lymphocytic leukemia.
I owe the fact that I'm not planning his funeral today to a very dear friend and physician who advised me to take him to the ER for a number of seemingly unrelated and rather sudden symptoms on Wednesday afternoon and evening (Sept. 7, 2011). His symptoms: a puffy face when awakening from sleep, shallow breathing, and a distended abdomen. Fortunately I heeded his advice. Had I simply called the 24 hour insurance hotline nurse, she likely would have recommended that I wait and take him to the pediatrician in the morning. That delay would have meant disaster.
But as we checked in at the front desk at the Corona ER at 900 p.m. Thursday night, the lady asked which one of us was being seen. When she saw Derek, she looked surprised as though he did not look sick enough to come to the ER, and he didn't. As we sat in the waiting room, his breathing problems dissipated, and we wondered if indeed we were imagining things and were just there for an upset tummy that would resolve itself with the next bowel movement. The triage nurse took down the symptoms and checked his vitals. We saw a resident, then an internist. As the internist felt Derek's abdomen, he quickly zeroed in on the very spot Derek had indicated as the site of his tummy ache. Perhaps I wasn't imagining things after all. Perhaps it was what my friend had feared: a bowel obstruction. (Oh if only that's what it could have been. How my perspective has changed.)
The doctor ordered blood tests, an x-ray, and a ct scan. After they did the second blood draw, Derek fainted. That was what got everyone taking us seriously. He immediately got a bed in ER and started getting the attention he needed. As Derek went in for the ct scan just after midnight, the results of the blood tests came back. The white blood cell count was unbelievably high - 245,000. Normal is 5,000-10,000. The doctor knew there was no infection or obstruction. We were likely looking at leukemia. He contacted Loma Linda University Medical Center Children’s Hospital who strongly urged him to transfer Derek to them immediately. We didn’t realize it at the time, but after that phone call, the LLUMCCH oncologist, Joan Morris, flew into action. She arranged for tests and treatments before Derek ever arrived so that when he did, he would receive immediate, intense care. She even sent two of her personnel in the ambulance to personally escort him. The danger, of which we were ignorant at the time, was that he would have a stroke as a result of such a high white count. There weren’t enough red blood cells to carry oxygen to his brain, heart, and lungs. The red blood cells were being crowded out by the white blood cells, hence the difficulty breathing. The risk of stroke or other vital organ failure would be present until the white count could be reduced, and that was Dr. Morris’s top priority. From the time she got the call, she treated Derek as though he were the only patient she had. Her attention to detail and her ability to organize and carry out all the procedures and care from so many specialty teams have been utterly amazing, and we are eternally grateful. At 5:00 a.m. today, Thursday, they were finally able to transfer him to LLUMC where they put him in Pediatric ICU. Dr Morris and her team were waiting for him.
Today has been completely overwhelming. We have filled a bathtub with our tears. It has been a constant barrage of information, concern, and decision making (which always involves mountains of paperwork and signatures.) So many critical things depended on other complicating factors that we felt as though we were walking on the edge of a razor blade -- extremely painful, but with devastating results if we fell off either side.
The x-ray and ct scan were of the abdomen because we were still thinking it was a GI problem. But the x-ray showed part of a mass surrounding his heart. That needed to be explored more. By late morning, he had a second ct scan of his chest. It showed the mass surrounding his heart and impinging on his trachea – another reason Derek was having trouble breathing.
Dr. Morris’ first priority was to get him hooked up to a machine which would remove some white cells from his blood. That would necessitate putting a line in his femoral artery in his leg. They also needed to obtain a bone marrow sample to determine conclusively what type of leukemia Derek had. They needed to perform a spinal tap to see if the disease had spread to his spinal fluid. While they did the tap, they wanted to insert a dose of chemo into his spine to begin the white cell destruction. In addition, they needed a safer, longer lasting access to his veins rather than a regular IV that likely lasts only a few days. They had to put in a special PICC line in his upper arm. All of these procedures are painful, but they were worried that if they sedated him, the pressure of the mass surrounding his heart would collapse his lungs. But they couldn’t put a tube in to help him breathe because removing the tube after the procedures could cause the trachea to collapse. So at first they were afraid he would have to have all of these procedures with just local anesthesia, and Derek would be awake the whole time. Nobody liked that idea, but they could not intubate him because of the risks. After discussing options with the anesthesia team, they decided to sedate him without intubating him. It was a rather precarious situation. We were grateful that Derek would not have to be awake for those procedures. The anesthesia team was prepared for an emergency, should one arise. They allowed me to accompany me him to OR and stay with him until he fell asleep. The anesthesia team were fantastic with him. They had him talking about his pets as he drifted off. Watching him go to sleep and then leaving the room was excruciating.
The procedures started just about 3:00 p.m. Then the waiting began. We were updated as the procedures were completed, but the intervening wait time seemed to take forever. In reality, it was about two hours. All the procedures went perfectly and he did well with the anesthesia. Praise God! Vince and I met him in recovery and accompanied him back to PICU.
By 7:00 p.m. they had him hooked up to the pharesis machine which would begin removing white blood cells from his blood. During this time they also performed an echocardiogram in preparation for the first round of chemotherapy, which Dr. Morris wanted to give immediately following pharesis. Again, the potential for disaster was ever present, but the pharesis nurse was fantastic and so attentive to every detail. The danger this time was that in removing so much fluid from him, his blood pressure would drop and he again would be at risk of brain damage. But she couldn’t give too much fluid for fear of overwhelming his kidneys. To complicate things further, the latest lab results showed that his potassium levels were way to high which could cause heart arrhythmia and/or damage. They had to give him Lasix to help him rid his body of this excess potassium. This meant that more fluid would leave his body, and the need to monitor input and outflow was intensified. The razor blade again. Every time he urinated, his blood pressure dropped and she had to quickly give him more IV fluids. Fortunately, he could now take water by mouth.
By 11:30 the pharesis was completed. Derek’s white count was down to 111,000. They had removed half of his white blood cells. The chemo they had given him in his spine earlier was also beginning to break down the white cells. He is not out of the woods yet regarding potential for stroke, but things are moving in the right direction.
Just after midnight, the nurse came in to administer his first round of chemo. As of now, 12:30 a.m. Friday morning, they are finished. Derek is asleep. They are monitoring his potassium levels closely.
Just 27 hours after entering the doors of the ER in Corona, look where we are now! I have whiplash.
