How did we get here?

Day 10 of 1,278

Medical News:

We received word back on the bone marrow and spinal fluid tests from yesterday. Like last week, the spinal fluid is NEGATIVE for leukemia. This means he won't have to have another spinal test next week. His bone marrow came back with a 7% blasts (leukemia cells). So, we're not in remission...there are a few stragglers out there. But, this is a drastic improvement over last week. This is all good news.

Carson is somewhat tired today, but still doing super overall. We will probably be here in the hospital at least through the next round of tests and chemo - scheduled for Monday. Our hope is that Carson is in remission by the time they do bone marrow tests next week. Please pray the chemo continues to do its job and kill off those nasty leukemia cells.

Thanks to everyone for the continued love and support!!


How did we get here?

Now, we've been asked dozens of times about the events that lead up to getting here. Just how did we end up in the hospital with a diagnosis of leukemia?

Well...for a week or two leading up to July 10th we had noticed Carson seeming not quite himself. He wasn't running a fever or showing any other signs of illness. He just seemed to tire more quickly and act crabby. Carson had started swimming lessons and was playing hard with his friends. But none of this seemed out of the ordinary. We are talking about an active 3 year old.

Around the first of July we noticed what looked like a rash or sunburn on the back of his neck. If you got really close, it looked like a bunch of tiny red dots on his skin. But it was just around the back of his neck and upper shoulder area.Hmmm ...we had just started swimming so it could be a number of things. Maybe it was the a reaction to the sunscreen? (Not likely.) Maybe it was parent operator error and we just didn't apply the sunscreen evenly? A weird looking sunburn? That sounded the best.

A few days later we noticed some bumps on the back of his neck. And when I say bumps...not like those associated with a rash. Something deeper under the skin. He was looking like he was putting on a little weight. But this is something 3 year-olds do from time to time when they have a growth spurt, right? He was sleeping a little more and putting on weight. Are the bumps part of a growth spurt? A few days later we noticed the bumps were still there and talked about taking him to the doctor. What would we say to the doctor? He seems tired and not himself? We didn't want to be the those overreacting parents...so we waited.

On July 9th we again noticed the bumps on his neck - they were still there. What the heck is going on? Things like this are supposed to go away after a couple of days, right? They aren't supposed to still be there.

Carson was still acting crabby. He didn't feel warm to the touch, but Jennifer decided to take his temperature anyway. Of course she decided on the under arm thermometer...which I NEVER would have chosen. Call me old-fashioned. Under arm readings never seem to be consistent. Well, thankfully she did. When she raised his arm she found a huge bulge just under his armpit.

It was his lymph nodes. Under his arm. The back of his neck. They were swollen all over.

Fast forward 24 hours and we were in the hospital hooked up to all kinds of tubes and monitors. The rash/sunburn on the back of his neck was caused by low platelets. Small capillaries in his skin were bursting and couldn't clot. His lymph nodes, liver, and spleen were swollen beyond belief, trying to filter out the leukemic white blood cells which were flooding his bloodstream.

Even though the doctors speculate that Carson had only been sick for a few of weeks, he was in really bad shape. His leukemia is aggressive.

Is that a football neck you have going on, or is that leukemia? Carson showing off new swim goggles on June 27th, two weeks before diagnosis.

Then the fear hits. No matter how many encouraging stories you hear, you are still scared. This isn't Vegas. When your child's life on the line you don't want to hear about the odds. And then the guilt sets in. What were we thinking putting off taking him to the doctor? Why us? Did I do something wrong? Why couldn't it be me instead of him? I'd switch places in a heartbeat.

I know there's a reason for everything. I just wish I could figure out what that reason was!

Paul.