13 March 2013

Keian puts the "rad" in radiate...

We have another 'tentative' plan for Keian's transplant. I say tentative a little loosely, as we've been known to discover recently, be prepared for anything. We will remain in the hospital until next Tuesday, which is the day that he will be finished his 14 days of antibiotics for meningitis. We'll then be 'free' for nearly a week. Again, I use the word free very lightly, as due to his counts, we'll be limited to where we can go. That is definitely one thing that we've discovered can be worked around. Movies during weekday matinees, Toys R Us in the mornings, small grocery stores and of course our perma-getaway home...the trailer! I'm actually super happy with it - close to the hospital, comfortable bed and enough space for our necessities. Though showers aren't an option considering the small tank size, it's just a hop, skip and a jump over to the oncology ward parent showers. I may still feel and look like a hospital mom, but at least I smell good!

They will begin with his cranial radiation on March 26 and it will continue for 3 consecutive days. He will be admitted on March 27, after his 2nd treatment of cranial radiation and will begin his transplant countdown and chemotherapy. His transplant day, the day he physically receives Joren's cells, will be considered day 0. The 10 days preceding will be negative days, so his first day in hospital will be day -10, and then each day proceeding the transplant will be +. The following week, he will begin total body radiation, which will for the same 3 days, though he will go for 2 seperate treatments during the day.

They have warned us that Keian will definitely develop nausea and vomiting through the treatment - to be honest, he's been quite lucky with those side effects. Of course, he has definitely had his horrible days, he hasn't had a consistent time where this has been that much of a problem. This is the time where we expect the worst, hope for the best! He's been doing absolutely amazing these past couple of days with his nutrition intake. For a while there during this admission, it was touch and go, so I was kind of unsure of what might happen - perhaps they'd insert the NG tube again.

He will be at increased risk of bleeding internally and will have severe reduction in white and red blood cell- we've been told to expect Keian may need up to 2-3 transfusions per day for the weeks following. Of course all of these are the immediate side effects - we've been given a break down of what to expect in the days, weeks, months and years following, but since all children are different and don't live by textbook creations (we all know Keian has broken the mould many times during his treatment), we really won't know anything until we see it day to day.

Our Oncologist came to see us this morning to discuss the plan of maintenance of Keian's remission during these 2 weeks of delayed treatment. Their overall goal was to have Keian with a negative MRD (minimal residual disease), which looks at the minute levels of cellular formation. After his original remission back in August, he ended with a positive MRD of .26, with his 2nd remmision back in December, he ended with a positive MRD of .12 and with his recent test last week, it was discovered that he is finally in a negative MRD, which means that he has less than .1% leukemia cells (Less than 5% is considered in remmision - keeping in mind that remmision does not mean CURED). They are pulling from all they have to offer in order to give Keian the best chance of a cure. So, this is a GOOD thing! The trick is to keep him there, which could pose to be a little tricky in itself, as his leukemia has proven to be very aggressive. He'll be getting an extra IV dose of vincristine, which is the drug that caused K's drop foot and muscle wasting - though this will be a singular dose, it will be unlikely to cause any additional damage. He will also begin a 5 day dose of prednisone. Oh, prednisone, we have a love/hate relationship. I will get a little chunky monkey for a short while with an appetite like 2 grown men, but I will also have the horrible attitude that comes with it. Again, this is a short lived dose, so it's unlikely to cause any additional side effects. Another they will add in is mercaptupurine, otherwise known as 6 mp. He had that during his original treatment plan, but it is an effective anti-cancer drug. Which reminds me, something I have never asked if if they will keep Keian on some sort of anti-cancer drug long term after this treatment is over...food for thought, that's for sure.

For now, we wait. We're on day passes throughout these last days of admission, so it's almost as if we visit for a short hotel stay overnight.

"The most authentic thing about us is our capacity to create, to overcome, to endure, to transform, to love and to be greater than suffering."

1 comment:

  1. So much for this little guy to go through. Thoughts and prayers for your family, Chantal.