Let me begin by sharing that there were no glaring warning signs that something was horribly wrong. Each symptom Chase exhibited, when looked at alone, was fairly typical of an active 13 year old boy with allergies.
• Bruises – he wrestles with his twin brother and he’s a Boy Scout
• Sleeping a lot – he’s a teen (they sleep a lot), he’s always been a long sleeper, and he’s always taken naps
• Headaches and stuffy nose - Sinus headaches due to allergies are not uncommon in our family.
• Aching legs – he’s grown quite a bit in the past few months and we thought growing pains or he had strained a muscle
• Gums swollen – he wasn’t doing a great job of brushing his teeth and admitted it.
Chase participated in an 18 mile round trip hike/camp out a few weeks ago with his Boy Scout troop – carrying a 25lb backpack, too. He was fine during that time and to our recollection, had no problems other than some mild dehydration. That is what made his diagnosis so incredibly disturbing! To be so able and healthy just a couple of weeks ago, and then to be diagnosed with Leukemia is so very difficult to accept.
Chase went to the doctor a week ago for a sinus infection and was given antibiotics. His swollen gums were also a concern along with the possibility that there was an infection or could be. The doctor thought both would improve, as did we, but even after four days his stuffy nose didn’t seem much better.
Two symptoms that grew worse instead of better, which prompted us to take him back to the doctor on March 25th, 2009 was his fatigue and a “goose egg” lump and bruise on his shin. After we realized that the bruise was feverish to the touch, we thought he might perhaps have been bitten. Since he had recently camped out in a park full of deer, we considered the possibility of Lyme Disease. All of his symptoms pointed to that, but Chase didn’t recall being bitten by a tic.
The next day, he went back to the doctor for blood tests. The results were troubling to her, which prompted her to ask David (Chase’s dad) to call me at work and have me come to the office. Once there, she informed me that his blood results were very concerning and that she wanted us to go to Scottish Rite Hospital (Children’s Healthcare of Atlanta).
We weren’t there long before the doctors delivered their results – Leukemia.
Chase’s white blood cell count was 15 times the normal level, he was anemic (thus the fatigue), and his blood platelets were very low, which explained how easily he was bruising. They admitted him immediately and began treatment even before they brought him up to a room. The next morning, he received a blood platelets infusion, and the doctors told us that Chase’s Leukemia was type AML (Acute myelogenous leukemia). I’m not sure if this link will show as a link, but here is a brief explanation of this type of Leukemia : http://www.marrow.org/PATIENT/Undrstnd_Disease_Treat/Lrn_about_Disease/AML/index.html
As we understand it, this type of Leukemia is rarer in children and typically leads to a bone marrow transplant, which is why he was transferred to Children’s Healthcare Egleston campus at Emory University. They only treat this type of Leukemia at this hospital as well as the bone marrow transplants.
As I type this, Chase is undergoing a Fareze treatment – 3 hours long – where his blood is being cycled through a centrifuge to spin off of the bad white blood cells, and then his “cleaned” blood cycled back into him. Since his white blood cell count is so high, they want to bring his levels down in preparation for a surgical procedure and chemotherapy. He is expected to undergo this Fareze treatment one to two additional times before being released from the Pediatric Intensive Care Unit (PICU) to go to the AFLAC Cancer Center at Egleston.
From what we’ve been told, Chase will be here a month at a time for possibly six to seven months with two-week breaks in between treatments. The chemo treatment doesn’t last the entire month, however since he will be prone to infections without “good” white blood cells to fight them, he has to remain in the hospital.
To everyone who has called, emailed, stopped by, Plurked, and posted their support on Facebook – we cannot begin to thank you enough for all of your thoughts and prayers. Please continue to keep Chase on your payer lists. Even faced with this, he has remained incredibly positive and upbeat. He’s truly an inspiration to me.
Just to give you a brief example, tonight before his Fareze treatment began, Chase became somewhat entranced by the monitor displaying his vitals. At first he was looking at this window in his room and I couldn’t understand why. I then realized he could see the reflection of the monitor in the glass. With a big grin, he informed me that he was holding his breath to see how much he could change the numbers and the lines showing his heart beat, oxygen level, and respiration. That little experiment progressed until he managed to set off the alarm on the monitor, which first prompted someone on staff to come in and check on him. Chase laughed as he explained to the man what he was doing, laughing even more as the man walked out chuckling at what Chase had done. He continued to experiment until he “lured” his attending nurse, Charlie, into the same trap. I think the mention of “shocking” Chase back into a regular breathing pattern was mentioned, but I might be mistaken. Charlie wagging a warning finger at Chase through the window into his room and listening to his monitors wailing got him laughing so hard he was literally crying – me, too for that matter.
He’s an amazing kid!
No comments:
Post a Comment