Kyron Horman

Hello everyone, this little boy in the picture here disappeared from his elementary school less than 20 miles from our home. His name is Kyron Horman, and he is only 7 years old. I'm posting his picture here on my blog in an effort to "spread the word" on his disappearance. It is the least I can do.

I cannot fathom the pain that his family is going through. It makes me realize just how "lucky" we are.

Lucky? Cancer? Am I reading the right blog?

Yes.

We get to wake our children up every morning. (Sometimes, they wake us)

They get to play with their friends and each other during the day.

We get to read them stories, and give them kisses and hugs goodnight.

They get to go to bed knowing how much they are loved.

We get to teach them lessons on integrity, and honesty.

They get to teach us lessons on how to remain joyful, and experience the wonder of a new world every day.

We get to watch them learn new things - constantly.

They get to experience the pride of their accomplishments.

We have the opportunity to try and rid our son's body of this cancer.

Our children get to grow up into amazing human beings - in spite of this cancer.

We get to tell them both how much we love them - all the time.

They get to tell us the same.

We get to be together as a family - every day.

Our family, and so much of our community is on "high alert" looking for Kyron. We hope that his family can wrap their arms around him soon, and enjoy a simple "I love you" with their precious boy.

Please take a moment to look at Kyron's picture, and if you have even the "slightest" feeling that you have seen this boy, please call the tip line 503-261-2847. For more information, click HERE

Counts Update...Again

Alex had his ANC checked today. We are stable at 1000, so we are staying the course for another two weeks. We'll evaluate his counts at his next Chemo appointment. Alex is quite excited for that one, since he will get his beloved "sleepy milk"...and a lumbar puncture to throw more poison into his brain...

Silence Is Golden...

It has been quite a while since I have posted on this blog (about a month, give or take a day). After the last blog entry, we were able to release 4 weeks of built-up stress and worry about a relapse and/or a secondary cancer.

I cannot begin to tell you the level of relief we felt. I gave myself some time to just "live in the moment"; that Alex was only battling one cancer, and that a relapse was not an immediate concern.

During the past month, Alex has been on a 50% dosage for his oral Chemo, and even with the reduced potency, Alex's body still had to battle fatigue, and discomfort. Eric and I had to readjust to the "Chemo-normal" behavior - which can be anywhere from cranky to clingy, and everything in-between.

Today, we went back to the clinic to check Alex's counts, and to give him his monthly dose of Vincristine. Good News. His ANC was 1,000 - right in the middle of acceptable range. The doctors decided to bump up Alex's Mercaptapurine dosage a bit over the next month, to see if they can squeeze in any additional poison without sending Alex's counts plunging towards zero.

Since the success rate for his Chemo protocol of 80-90% cure for first-time diagnosis is based on full Chemo dosages, I very much want to see Alex's treatment follow the protocol as best as we can. A 50% dosage just doesn't seem "aggressive" enough - especially after getting a taste of what a relapse/secondary cancer scare is like.

So, in two weeks, we will go back to the clinic for a counts check to see what this higher dosage is doing to Alex's counts.

In the meantime, we will give our son his nightly poison, and hope that the higher dose is tolerated.

If you don't hear much from us in the next two weeks, it probably means that our "normal Chemo" routine is back, and there is nothing really to report. You have heard it all before...the steroid rages, the regressed emotional state, the exhaustion, and manic behavior.

Please remember, that my "quiet time" with the blog, is really just us living our lives with the strength of all of you - our friends and family holding us together. It means there is no crises, and that we are not up against any new problems.

Really.

In this case, our silence IS golden, and we are basking in the warm glow - with fingers and toes crossed...

A Post By My Mom...

I thought I'd clarify for everyone what 2400 means. It's an ANC measurement, or Absolute Neutrophil Count, an indicator of how many white blood cells Alex's body is producing. In the case of T-cell lymphoma, the doctors want to see his ANC counts in the range of 750 to 1200, which is MUCH lower than normal. If his ANC drops below 750, then he is susceptible to infection, and it can be life-threatening. If it is higher than 1200, then that is an indicator that perhaps the chemo drug is not working properly to kill 'bad' white cells, which is what lymphoma is - a rapidly growing number of cancerous white cells. In Alex's case, the type of white cells are T-cells that are involved in normal immune response. Normal T cells assist in killing off infections, but cancerous T-cells do not do that.

The drug Alex has been taking daily for the last 6 months or so is called mercaptopurine, and it is one of the drugs responsible for the 80 to 90% success rate in lymphoma and leukemia patients. Mercaptopurine kills white cells (T-cells in Alex's case) - both good and bad ones, so it's important to get the dose right to keep enough white cells around to fight infection, but not so little drug that the cancerous white cells have a chance to grow. However, Alex seemed to be 'hypersensitive' to mercaptopurine, and for the past 4 weeks his ANC counts were anywhere from 300 to 500, below the required threshhold of 750. During these past 4 weeks he hadn't been taking any mercaptopurine, which means that not taking the drug could have allowed the 'bad' white cells to grow. Last week his count was 500, but the docs decided to wait one more week without the drug to see if his body would start producing good white cells again. We had been concerned because he'd gone 4 weeks without mercaptopurine, but his white cells counts were too low to start taking it again.

Today we had good news: his ANC count went up to 2400. If his counts had come in below 750, the docs would have done a bone marrow aspiration to see if any 'bad' white cells had invaded the marrow. Cancerous white cells in the marrow can grow and outnumber good white cells that are produced there, causing leukemia. When he was first diagnosed, there were no cancerous white cells in his bone marrow, so we were all holding our breath until today's ANC count.

The count of 2400 means his body had started producing white cells, but 2400 is too high, because some of those cells could be cancerous. The docs immediately put him back on mercaptopurine, but at 50% the normal dose. That will continue for a month to see if they can keep the correct ANC range between 750 and 1200.

Much of the trick with managing chemo is getting the dose right: you want to kill 'bad' white cells, but keep enough good white cells around to fight off other types of infection. So, we never want to see a number that is too low or too high, other than in a case like this one which was 'Why are his ANCs staying so low for so many weeks?' We want that ANC range to be between 750 and 1200.

Research is being conducted in clinical trial on the use of immunotherapy drugs, which target cancer cells only, rather than chemotherapy ,which kills ALL rapidly dividing cells both good ones and bad ones. Chemo has such harsh side-effects (hair loss, joint pain, and more), and I'd sure like to see immunotherapy being used in place of chemo. But, Alex's doctors chose chemo because this particular protocol has good outcomes.

Alex is a brave little boy, and we are so proud of how he handles these nasty drugs and their side effects. I remain confident that he will beat this terrible disease.

Diana (Sara's mom)

2400

Complete relief...more soon....