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Up and Down


8/29/2009
Journal, Blood - 8/29/2009
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We're back in the hospital. Life with this boy is never simple.

You probably read the good news earlier in the month
   ...Jaymun's CNS is clear of blasts and his MRI showed resolution and/or significant improvement.

However the past weeks have been nerve-wracking for us because Jaymun seems to be slipping.
Although his tests continue to look good, most days days he seems a bit off-balance - just not himself. Sometimes he has been shaky and uncoordinated. He seems to have a smaller emotional reservoir and a shorter attention span.

It is scary, these symptoms remind me of the five months last year we spent nursing him back from active CNS leukemia with herbal remedies - watching him like a hawk to determine success / failure or tolerance to daily doses of herbs and spices. This August we started out with a good sort of deja vu - Jaymun had been improving in predictable short cycles
...and going much faster this time because we also have the "triple" chemo intrathecals. But the chemo brings its own complications because it effects the way he acts for a day or so. I've been giving at least a 24-36 hour "herb-free" window around the chemo treatments so I can learn how to read his reactions.

I thought we had things under control when two weeks ago things started going bad.
The tests still looked good, and Jaymun still had energy and enthusiasm, but from my perspective he was reacting (or not reacting) differently. I saw increased neurological symptoms that I haven't been able to manage as usual. This past month some things I gave him would have the exact opposite effect as I expected. Last Friday (the 21st) when we came in for chemo he seemed more unsteady than he'd been for months, and I worried that
   either his leukemia was comming back,
   the metotrexate/ara-c/hydrocortisone cocktail was effecting his brain,
   or he was having adverse reactions to our herbal meds.

Jaymun is getting smart about everything that goes on here at the hospital ...he knows when he is going to get poked, and breaks your heart sobbing loudly: "oh no, oh no, stop, stop, daddy help me, oh no". Friday (the 21st) he squirmed so much that all we got was a CSF sample (which turned out ok again ...still no blasts). But we gave up trying to give him IT chemo that day and decided to wait until Monday (24th) (which would be a 10 day gap from his prior chemo on the 14th). After Monday's chemo I stopped all herbal treatments this week, to reestablish some sort of observation baseline.

As an aside: I'm thankful for the oncology help this past month, but I have little hope that all by itself chemo will permanently resolve Jaymun's disease. Neither do I hold better hope for radiation (I've discussed radiation here before). I'm sure the oncologists know that with traditional treatment, Jaymun has little chance of making his 10th birthday, let alone his 5th. Relapsed AML patients have a dismal survival rate.

My hope is that by combining traditional care with the best of hundreds of herbal choices, the database software analysis tool I'm developing to connect diseases/genetic markers/plants/treatments, keeping abreast of the latest research done world-wide, etc. ...that God will help us apply the right things at the right time to care for little Jaymun. Just a few weeks ago I found studies on a compound derived from broccolli Indole-3-Carbinol which is a potent NF-Kappa B inhibitor and extremely bio-available. That's one more thing in my toolkit, another example of how parents can be at the front lines watching, learning, and fighting this battle together with the docs. (the study was from July 2005, a year before Jaymun was born)

However, Jaymun only has so much time. The rest of my family, company, customers, employees, etc. need my attention also. With the tools I have now, as long as Jaymun isn't in blast crisis I think we have a fighting chance even without chemo - using simple herbs, spices, fungus, etc. Remember, that is what we did last year and we achieved remission without chemo despite active CNS disease. However I fear a day when his disease will not be "manageable'. When things would spin out of control and we will have to let our little boy go.

This past month has been especially heartbreaking watching others finish their fights and go to be with Jesus. And just when I had just been confident enough to stop Jaymun's daily observation and treatment, and resume business travel - five weeks later Jaymun relapsed. I think if I'd have been home I may have noticed symptoms, resumed treatment, and got things under control without needing all the hospital trauma, chemo toxicity, etc.

So the past weeks have been particularly stressful for me, I can't ignore things I see.
Although we're happy to watch Jaymun running around and the tests are good, I keep noticing little things about Jaymun that aren't supposed to be happening, and when I do things to fix them it doesn't work or even gets worse.

Imagine my relief when at yesterday's clinic visit, Dr. Kelly suggested we check the blood level of Jaymun's Dilantin (Phenytoin) (anti-seizure drug). Jaymun is about 40 pounds, and gets 125mg of Dilantin orally twice per day. The original goal was to maintain a blood level of 15 to 20. Well, well... we checked the trough level (lowest point of the day) and it was TWENTY-NINE!!! That is way high, especially since that was a trough level - who knows how high the peaks had been. So hopefully that accounts for the weird symptoms these past weeks. To correct this, we are dropping the Dilantin for a few days and picking it back up on Sunday at a lower level (100mg twice per day).

WHEW. Big Relief. What an emotional roller-coaster. This week I had been snuggling with Jaymun some evenings in bed, actually grappling with how helpless it might feel to lose him. I'm not even going to try to describe those feelings.

So I went back to the office yesterday afternoon re-energized. I had been up programming since 2:30 AM (have to keep ahead of the competition you know :) - then a morning clinic visit, but the good news made it all worth while. However, last night when I walked into the house, although I was greated by a laughing Jaymun, there was a new problem. Jennifer was worried that his NG tube might be leaking because his shirts had been getting soaked all day.

When I checked, I immediately discovered IT WAS MUCH WORSE THAN THAT. His lumbar ommaya incision had a leak and clear spinal fluid had been running down his side all day!!! So instead of a quiet Friday night we made a beeline for the emergency room down in Milwaukee, and spent the evening getting processed: X-Ray + Labs + room transfer + regular vitals + IV + beeping pumps = sleepless evening.

I remember that several times the past weeks after ommaya taps, I had pointed out to the nurses that CSF fluid was leaking out of the neede puncture for a minute or two afterwards. So yes, it seems that after the ommaya was placed either a leak developed, or the area where the catheter enters the lumbar never healed up. In any case, the past month pockets of CSF fluid were building up around the ommaya reservoir and now finally they started leaking out through the healing incision.

They were worried about infection (meningitis) so our poor little guy had to go into surgery this morning to remove the entire contraption. Afterwards he ate a great lunch and seemed in good spirits, but this afternoon he spiked a fever, vomited, and is very miserable. Since they tested some bacteria in the CSF fluid from the reservoir, they are doing cultures.

Looks like we're not going home tonight either.


PS. I wish at the time I had known Dilantin/Phenytoin had an effect on the immune system's ability to fight brain tumors
http://www.ncbi.nlm.nih.gov/pubmed/6502237 That would have connected the dots ...helping give weight to the clinical symptoms I saw.
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