Friday, December 17, 2010

Another Countdown

We are in a good phase of treatment now.  Kol's counts were higher last week so we have been able to get out a bit more during the last 10 days.  The best part is that we still have another week of relative freedom.  We have rediscovered Kol's love of mandarin oranges;  he has been eating them constantly.   Kol isn't the only one that loves them - in the last 6 weeks, we have gone through roughly 190 lbs of mandarin oranges.  Probably as a result of all of the oranges he's eaten, Kol has started gaining weight.  He is now back to the weight he was at when he was first admitted to the hospital just prior to his surgery.  He is still pretty skinny - size 4 pants fit him around the waist, so the size 8 clothes that fit him in the length are way too loose.  Kol's hair has also started to grow back.  We were told that although the chemo doesn't cause hair loss, since Kol's hair was already gone due to the radiation, it would prevent the hair from growing back.  The girls have jokingly called Kol "peach" because of the fuzz that is coming back.  It's not really long yet, but it's there hiding underneath the chemo caps and toques that he always wears (even when he sleeps).

We still have just under a week until round 4 of chemo starts - on December 22nd.  There is a lightness, freedom, or happiness around the house now, which is good to see.  We are enjoying time together, and have started getting into more of a routine with homeschool and chores.

The next MRI has seemed so far away, so it's been easy to put it out of our minds, and just try to live each day as it comes.  However, since we are now only 5 days away from the scan,  it's becoming much more prominent in our minds.  We can't wait for the day to come, and yet we're dreading it.  The waiting is tough. The MRI itself is such a little thing - Kol just gets to watch a movie while it is taking pictures of his head - but those pictures are going to dictate how we live our lives in the next few months - and potentially for years.  They will give us an idea of what is happening with the tumour - if it is growing, shrinking, staying the same.  From those pictures, we will learn what kinds of decisions we will have to make.  I pray the decisions will be easy.  They will be easy if the tumour is gone, or even shrinking.  I'll even be happy if it's just not growing at this point. 

Please pray that we will get good news following this next MRI.  Pray for health, and healing, and comfort for the rest of us.

On the same day as the MRI, we will be meeting with a psychologist, who has had experience with brain injured children.  We will get information on counseling options, and some help in dealing with some of the inevitable emotional issues we're all facing as a result of the tumour and subsequent treatment.  This psychologist is also a neuro-psychologist, and is planning on doing some neurological assessments on Kol after his chemo is finished.  From that we will hopefully learn what kind of brain damage, if any, has been caused by the surgery, radiation and chemo and how to help Kol overcome any shortcomings he may face.  Please pray that this meeting goes well.

The OES Christmas programs are also on the 21st.  Mari will be involved in these, which means that we will go to Saskatoon in early afternoon for the meeting with the psychologist, and then one of us will come back for Mari's evening performance.  Then we'll go back to Saskatoon with the girls for the start of round 4 of chemo the next day.  It's not the best arrangement, but it will work.  We think it is just as important to make it to Mari's program as is it to see the psychologist with Kol.

It still feels like we are on a roller-coaster ride; I'm sure it will be like this for a long time, but I've had a few emotionally difficult days lately.   I think I said earlier that one wise person told me that grief and understanding come in waves.  I guess I was ready for another wave.  When I was feeling lowest, God sent just what I needed.  A phone call, an offer of help from a friend, an afternoon out with my husband, time to sleep in, and freedom to cry.  More little things; little things that mean a lot.  As traumatic as this experience has been, I am extremely thankful for the lessons that I am learning.  God is good; great things He has done.

4 comments:

  1. Dear Kristen...thinking of you and appreciating how you are so vulnerable and open with us...that takes such courage. You have had to be so strong for so long now....tears are good! I am still in Edmonton so do not have your email address with me. Keeping you in prayer and especially prayer for Kol that the news would be good and praying that there will be no brain injury for Kol. Sending you a hug Kristen, with love.

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  2. Kristen and Kirk... thinking and praying for you and your family as you await the MRI. I will be praying for a good report! Praying peace that surpasses all understanding for you both and the kids!

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  3. Kristen - we are touched by your strength and courage as you and your family journey through this path. Thank you for sharing your personal story. We are praying for renewed health for your son and may God continue to bless each one of you and give you peace.
    Helen & John Siemens (friends of Connie and Ob)

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  4. Carma Hopkins HedlundDecember 19, 2010 at 9:26 AM

    Kristen & Kirk, My thoughts and prayers are still with you. Know that you are in my heart. Wish that I lived closer so that I could help. I used to babysit Kirk, such a sweet child. So...your kids must be the same! Hold on tight, try to laugh, be safe.

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