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Journal, Blood - 9/23/2009

People ask "How is Jaymun doing?" or "How are you holding up?"
That is both a complicated and simple question to answer.
First, the complicated part. This is truly a terrifying disease. I've watched friends lose their children, and when I see blasts lurking in Jaymun's blood and CNS, I know that within days the tumor can go from 25% to 90% and tear him away.

So as we take this path, on the left side there is this huge leukemia beast, straining at the chains trying to take a fatal bite out of our little man. But on the other side, and almost equally as terrifying, are the treatments that might be used to try to kill off the cancer cells. We've been through that route twice before ...venturing deep into miracle territory (Dec 2006 and July 2008).

The way is dangerous ...the path gets narrower as you proceed ...more side-effects, weaker body, tougher treatments, less ability to fight infections, smaller toxicity tolerances, etc. I know only too well that often the path closes up around you, and the room between the leukemia and the treatments disappears. I've got friends right now praying hard to make it through a tougher, more targeted treatment.

So we are sitting in a brief limbo. Once you start comprehensive traditional treatment you are moving your eggs towards one basket. The side-effects and interventions can create their own spiral of jeopardy. The toxicities limit alternative options. August is a good example. After the CNS blast crisis on July 18 he had amazing response ...one IT treatment took him from 246 nucleated cells down to 32. However, a month of CNS IT's resulted in marrow relapse. I know that is "textbook" behaviour (treat the CNS alone and the marrow will relapse). I suspect some of the IT's were leaking profusely into his blood because of the Ommaya leakage (I witnessed his heartrending screams during his IT treatments as soon as the chemo started to be infused, and then there was a brief time where his hair thinned just slightly ...also the abnormally high amount of neutrophils). I hope we do not have secondary leukemia (new cancer).

So now with CNS we are sitting back where we were last year.
And with marrow - I suppose 25% marrow tumor today is worse than "unrecoverable" aplastic marrow last year - in that sense our situation today is more precarious. And I bet the chemo treatments have made it more resistant.

At this point I fill two roles: parent, and "doctor". Jaymun has now been getting almost 20 days of treatment from me, average of four timed doses per day, various herb/spice/fungal compounds (sometimes up to 20+ ingredients per dose). We've been gettting daily labs since the 18th, and I'm finally assembling enough data to start to "dial this in". All the lessons I learned watching him last year have changed just a little. Last year he was aplastic, now he has a functioning immune system. That introduces postives and negatives. Then it was harder to measure things and we needed infusions, but now we have marrow to worry about (a pro-leukemia environment). Among other things my "protocol" needs to keep his blood clear, protect his CNS against new chloromas, keep him transfusion independant all the while reducing marrow tumor load and eventually clearing marrow and CNS. That is a tall order, but I would not be making the attempt if I was not reasonably sure it could be done.

I admit I am not a trained doctor, and possibly I am mistaken. However, even the doctors try things they think will work, and then adjust treatments afterwards. This cancer is not easy to figure out, and we have all failed several times to "fix" Jaymun. I suppose, at some point soon, if the "herbal treatments" do not resolve things, we will give the oncologists another crack at it.

So that was the complicated answer. The simple answer is this: As we go forward on this path I've learned that it is impossible to forsee all the dangers, twists and turns. What gives me confidence is that there is One who goes before us, leading the way. We do not need everything answered up front as long as we know He is with us. Even though I realize that our path could very well lead out of this world, in that case our Lord already blazed that trail, and so we win either way. Who else should we follow?

That gives me comfort and confidence to move foward without being afraid. We are in close communication with our doctor and we are all cooperating to do what is good for Jaymun. Please pray that God gives us all wisdom, and stays close with us all the way through.