Tuesday, September 28, 2010

The holiday is over

I have never liked the way I feel at the end of a break.  This ending is worse than most.  It's been wonderful being at home, getting back into a routine, being normal.  Aside from his lack of hair, no one would guess that Kol is sick.  He is still Kol.  He is taking piano lessons, is practicing his lines for his part (Sgt. Tibbs) in "101 Dalmations"  and begging to do more chemistry experiments, or play on the Wii.  It has been easy to pretend, or forget (however briefly) that Kol is sick.  We've been more worried about Birgitte the last few weeks than about Kol.  Now, the pretending is over, and we need to face reality again.

Kol had an MRI on Thursday, the 23rd.  He did an awesome job - he was scheduled during a time when they don't have an anesthesiologist in the MRI suite, so we were a bit worried that he would be scared, and that they'd have to stop the MRI.  They have special goggles and earphones for kids, so they can watch a movie during the procedure.  Kol got to bring a favorite movie along, so he chose Star Wars.  Big surprise. :-)  He did great - and was very proud of himself for not moving.  The MRI staff were impressed, too - at least that's what they said.  Maybe they were being polite.

This MRI will be the first picture of the tumour since just after the surgery.  There will still be lots of swelling because it takes a long time for dead cells to be removed from the brain so this MRI will only give the Doctors a partial idea of what is happening in Kol's brain. There will be another MRI at the end of November, and the two MRIs combined will provide more information about what is happening with the tumour.  We'll find out the results when we meet with the oncologist on Wednesday.

Kol starts his first round of what they call Maintenance Chemotherapy this Wednesday.  There will be six 28 day cycles in total.  Wednesday (September 29) will be day 0, Thursday will be day 1, and then day 28 becomes day one for the 2nd cycle.  On days 0 and 1, Kol needs to be at the Cancer Center from 8:00 until 4:30.  He will get IV fluids, the chemotherapy drug, and another drug that will protect his GI tract from the chemo drug on both days.  It can cause internal bleeding if the other drug is not given.  Fun stuff.  It is also very damaging to the bone marrow, so we will most likely be on 'lock down' for a while again while his blood counts are low.  We can go home again on Thursday night, until day 7 (the following Wednesday), when Kol gets another dose of the chemo drug he got while having radiation.  He will have occasional blood work done between day 2 and day 28, and we will have to give him daily injections of a drug which is supposed stimulate the bone marrow while we are at home - or we could take him to the medical clinic here to get it done, if we need to.

Kol will be getting potent drugs - poisons, really, which we hope will kill the cancer before it hurts him too much.  We really covet your prayers again.  Please pray that:

  • Kol weathers the chemo well 
  • that he won't suffer the more serious side effects of the drug - especially the long-term ones 
  • for Kirk, me, and the girls in our roles as supporters and watchers
  • for family dynamics and strengthened relationships
  • that we will soon get to see the real Birgitte again as her medication is reduced
  • that we will be able to make good decisions
  • for healing

Thank-you for your prayers and for all of the support you have given us in so many ways.
Kristen

2 comments:

  1. sharla,kari and braden bertrandSeptember 29, 2010 at 5:58 AM

    we pray god that you keep kol strong during this time of healing and that you help kristen,kirk and kol's sisters and etended family strong in their faith to help kol beat the cancer and weather the chemo theraply that he needs in order to beat the cancer .we pray to you god that you will let kol's parents kirk and kristen make the best decisions that they can not only for kol but for brigitte as they are going through tis time we pray this in the name of the father ,son and holy spirit.

    keeping you in our toughts and prays love sharla braden and kari bertrand

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  2. I know that you don't need reminding but remember that your BLC family is here for you in whatever capacity you need. You just need give me the word and I will put the troops out. Kirk - don't forget our 101 Dalmations deal about the "exit" as I have that covered too. Your are in my prayers daily - Mrs. Weiterman

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