Wednesday, May 9, 2012

Kol is in a lot of pain again.

It's been a couple of long days.  I'm tired.  I'm emotional. 

When I published the last blog post, on Sunday afternoon, Kol was doing really well.  A couple of hours later, he crashed.  His headache came back and he started vomiting again.  He slept well that night, however, and he spent most of Monday sitting on the couch.  On Tuesday, Kol didn't even get out of bed, except to use the bathroom. He was constantly vomiting - it was only in the late afternoon that the vomiting finally settled down.  His headache is constant, not really letting up at all.  Movement makes him sick, so he vomits every time he gets up to the bathroom.  We've been fighting to keep his medications in his system, let alone any food or liquid.  He's not hungry, either, so that makes it even harder.  I hooked him up to the IV on Tuesday,  but something in his PICC line got clogged, or the line moved somehow, which stopped the flow.  I'm trying to get an IV pump for at home, so we can give him more IV fluids, if necessary.

It seems like we've spent lots of time talking to doctors over the last few days.  I've sent and received e-mails from Dr. Khan in Toronto, Dr McKinney in Victoria, and we've spoken with at least 2 doctors from Saskatoon as well as a couple of nurses, and a pharmacist.  It's tiring trying to put all of the pieces together, and co-ordinate the recommendations.  I guess that's our fault for not just sticking with one doctor, and one set of providers.  On the other hand, we're getting lots of support and advice from all of the doctors, and especially from the doctors outside of the "conventional" system.   

Kol just started a new treatment last Tuesday, which might be contributing to the nausea.  It's tempting to stop the treatment, but in many ways, it feels like this is our last chance.  Some people respond really well to this treatment - and DCA has been known to shrink tumours quickly - so if Kol responds to it, it could be extremely effective. The doctors who are familiar with DCA and it's use are recommending that we stick with it. 

We know that the pain and vomiting Kol is experiencing is due to excess pressure in his brain.  What we don't know, is what is causing the increased pressure.  It could be several things.  It could be that the tumour is starting to respond to the DCA treatment, causing increased swelling around the tumour, or it could be that the tumour has just grown so big.  Either way, it's not easy to manage.

A couple of weeks ago, I talked about being angry - angrier than I ever remember being in my whole life.  On Monday, I was more scared than I ever remember being. I hate seeing Kol this sick, and in so much pain.  As you all know, I tend to do lots of research.  I need to know what my options are, and I can't relax until I feel I know what is going on.  I refuse to just follow blindly, taking someone else's opinions or advice at face value.  (Maybe Kirk's skepticism has rubbed off on me over the last 18 years?)   However, once I have as much information as I can get, or at least as much as I can handle, I tend to rely heavily on my "gut feelings" or intuition when it comes to making decisions.  I had a "gut feeling" that Kol had a brain tumour weeks before it was diagnosed.  At that time, I also had a "gut feeling" that Kol would be alright - that he would survive, and that everything would work out.   I felt at peace, and just knew that Kol would be alright, and that things would unfold as they should.  I've relied on that intuitive knowledge heavily for the last 2 years.  It's probably the reason I've been as strong as I have been.  On Monday, I was second guessing everything.  My faith, my confidence was failing.  One of my greatest fears has been the thought of having to watch, almost helplessly, while Kol was in pain.  Sometimes, that scares me more than the thought of Kol dying.  That has been our reality the last few days.

We are making progress, but it is slow going, and we still have options.  Almost all of the doctors seem to think, (or are at least giving me the impression that they think) this is a temporary, but we know that with a brain tumour, anything can happen - and it can happen quickly.  On Friday morning, Kol was running through the house, being goofy.  A bit more than an hour later, he vomited all over the floor at the Cancer center.  It hasn't gotten better since.

We thank God for each person who reads this blog, for all of the prayers that so many of you have raised, and continue to raise for Kol and for our family.  We know that we're all in God's hands and that He is powerful.  The God who created the universe and knows how many hairs Kol has on his head, is powerful.  He is mighty to save.  Someone told me to read this passage a few days ago.  I've been relying on it a lot since.

19 and how very great is his power at work in us who believe. This power working in us is the same as the mighty strength20 which he used when he raised Christ from death and seated him at his right side in the heavenly world.21 Christ rules there above all heavenly rulers, authorities, powers, and lords; he has a title superior to all titles of authority in this world and in the next. 


  1. Thinking of you and praying for you. I think it is wise to stick with the DCA, Charlotte surprised all her doctors... DCA was our only medication for months. We kept increasing it as much as we could as time went on, way beyond what her Ongologist would have liked.
    I pray that Kol will be up and running through the house again soon. Hugs

  2. Oh Kristen, I have no words, only promises of prayer.

  3. Your entire family is in our prayers... I pray for encouragement and strength to believe in the healing power of God, and that Kol can rest and heal.. Covered in our Prayers... See you Friday night... God Bless...

  4. Kirk, Kristen, Kol, and all...
    Continuing to pray - may God hold you in the palm of His hands...
    Shannon in Steinbach

  5. I am an atheist...but I am praying very hard for Kol, and for all of you.

  6. Prayers and love to Kol and to the rest of you. Cling to God, He is your strength and protection. I'm praying for you all!

  7. My love and prayers are sent to your family. I pray, of course, for Kol's health, and that you and your husband have times of feeling 'peaceful' of stress and worry so that you can garner the strength to make decisions for you son, and to feel confident in your decisions. I pray for restful everything is extra, extra hard when one is tired. I can't imagine how difficult this time is for Kol and for your family. May the prayers of those who care help to hold you up to God's grace.
    Shelley in SK

  8. Praying for you all! For you Kristen and Kirk, for strength, comfort and also times of peace as you go through this unbelievably hard time. Also many many prayers for Kol, to ease his pain, vomiting and headaches. Praying that he can rest and that he will be feeling better again. Please know that you are in our thoughts and prayers. Love, Conny

  9. Carma Hopkins HedlundMay 10, 2012 at 7:42 AM

    My thoughts and prayers are with you. I wish that I could take Kol's pain for him. Know that my heart is with you.

  10. Viktor and Margaret FastMay 10, 2012 at 10:08 AM

    Praying for all of you for strength, courage and wisdom, and relief from pain of all kinds. Stay strong.

  11. We will be praying as well tonight for you and your family - you are all loved by so many people - so many prayers going up for Kol and all of you. May God bless you. Helen

  12. Kol and your family have been in our prayers. Together with you we trust in His great love, power, and grace that is always enough . . . love from Ruth and Arlin