Dear readers: I wrote and maintained these pages from mid-1997 to late-2000, during my son's treatment for leukemia. Currently he is 23 and over 3 years off treatment (September 2003). I have decided to keep this and related pages "as is", rather than go through and change them to past tense. But I want you to know: is no longer fighting leukemia, he is now a Survivor. We are all moving forward and leukemia is fading to some thing in the past. I am leaving this site up to encourage newly diagnosed families, and to share my information and links on leukemia and childhood cancer.
**April 2007. Seven years off treatment, ten years of remission! James is an adult with a full and healthy life. The ten year mark went almost unnoticed; leukemia is simply not much of an issue any more. But when I do think about it, I am amazed and I smile a lot. This is what we hoped for at diagnosis and during those long years of treatment. Thank you, scientists and health care team, for finding a cure and making it work.
For a lot more information on ALL, please see my ped-onc site section on ALL.
James does a lot of things with his days. One thing he does is fight leukemia. This page is about that battle.
James was diagnosed with leukemia in April of 1997. He was a month shy of 17 years old at the time. His "type" of leukemia is ALL, or generally refered to as childhood leukemia.
I am Patty, the mother of James and the author of these pages. I am writing this page from a parents' perspective, because James' thoughts about his fight are his own. He doesn't dwell on his condition. But I'm a Mom, with a capital 'M', and I just can't let it go. So bear with me, and read on if you happen to be interested. The nice thing about Web pages is that no one has to read them!
Updates (April 1997-June 2000) (Also see Treatment log.)
**October 2000. James is off treatment!! His last vincristine/MT spinal/prednisone pulse and last 6MP was in mid-July. He had his port out July 31, 2000. At that time they did a BMA and it was clear! This is absolutely wonderful. What more can I say?!
**June 2000. James is doing great. He now lives in our condo in Boulder, Colorado. He is a junior at CU Boulder, majoring in mechanical engineering. He works in the precision machine shop in the Chemisty department. He comes home a lot of weekends to visit and build RC planes!
**May 4, 1999: James is very exhausted all the time, and his oncologist is going to check his adrenal function and other possible causes. His 19th birthday is coming up soon -- I ran across the photo below of John and I bringing him home from the hospital. The memories this picture brings back. A happy trip home from the hospital with a newborn, 19 years later, how different things are, but how very much the same, still loving that baby and still loving that dad of his.
**March 2, 1999: James is doing fine, enduring maintenance okay most of the time (except those d%#$ prednisone pulses).
**December, 1998. All goes well with James still. He has completed a semester of college and is home on break, building planes. I usually don't worry too much about him. But leukemia thoughts never completely leave me. They subtlely color everything in our lives. They sometimes are so light as to be transparent and I can see through them and forget they are there for a while. I can be driving in my car singing to the music on the radio unfocused on anything at all and suddenly that black cloud looms overhead and I am reduced to tears: My Son Had Leukemia - Why Did This Happen to Us - Please Take Away the Fact That He Ever Had Cancer - I Do Not Want To Be a Cancer Mom It's Not Fun - I Still Can't Believe It Happened - Not Us.
**May 1998. Read if you want my thoughts on the one year anniversary of James' dx.James graduated from Lyons High School in May of 1998. Here is his graduation dedication, including pictures.
**April 1997-April 1998. See DDay and Treatment log.
My son and I were discussing what might have caused his leukemia. I said that I had come to this: I don't have the time or mental energy to dwell on the causes. They are not important. They drain my energy and are irrelevant.
James stated: Right, it's kind of like a computer. I replied, huh? He said, sometimes you know that something you do will crash the computer. But sometimes, it's something that you just can't predict, there are many factors involved and they come together to cause a crash. Sometimes you are doing the same things at another time and the computer doesn't crash. You don't try to figure out what you have done wrong. You just re-boot the computer.
So I say yeah, that's what we are doing: re-booting you. And he agrees, chuckling, but it takes a bit longer to re-boot a person!
(1997) My purposes for writing these pages are:
The pages are organized as follows:
If you have met any other Parents of Recovering Kids, or PORK, if I may, you know that one of our favorite stories to tell is that of our diagnosis. So, here's mine!
This is a mini-review of what the disease, leukemia, is all about. It's written for family and friends who want to know what is this gibberish I'm always talking!
You don't just walk into your local pediatrician and say, hi doc, treat my kid for leukemia! Oh no, far from it. The treatment log is just that, a weekly record of treatment.
Hey, you aren't going to get away with a simple explanation on chemo drugs, not from this chemist! I like to know how things work, these pages are my attempts to explain chemo drugs to the layman.
Actually, this page is not a nutrition guide. It's just what some parents have done to get their kids to eat during chemo.
Are you a brand new diagnosee, needing information on whether or not to enter a clinical trial? Go to this page for comments from parents who have "been there".
Research on cancer that might lead to cures; these are random topics that caught my interest.
The first few days, weeks, after James' diagnonis were traumatic. But, as the days passed it dawned on me that I was seeing my fellow humans in a new light. People were so very caring to me and to my family. Really caring, not just false words.
One thing that I have found out about people is how caring and helpful they are during times of crisis. That is a wonderful thing to know about your fellow man. I look much more positively towards humanity than I did a few short months ago. There is hope for this world, as there is hope James' winning the battle with leukemia.
Patty's Home Page/James' Leukemia/Leukemia/Diagnosis Story/Treatment/James' Treatment Log/Chemo Drugs/Feeding the Chemo Kids/Special Topics/About the Flowers
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