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. 
 

Crisis over

Kol and I are back home again.  Kol was just in the hospital for observation overnight, receiving IV fluids.  We also increased his pain medication, so he's back to himself - mostly.  He is receiving morphine pretty regularly, which I'm not pleased about, but at least he's not in as much pain.  I'm hoping that the morphine is just a temporary thing, but it may not be.  He's apparently at a relatively low dose, so that's encouraging.  We were able to bring some IV supplies home with us, so that we can give Kol IV fluids ourselves in the future, if Kol gets dehydrated again.

I'm glad we got Kol the IV liquids.  Right after the IV was started, I came home and got Kol his blanket, some snacks, and his medications - which I absentmindedly left on the table on our way out the door.  When I got back to the hospital 30 minutes later, Kol was much more active,  was moving easier, and was much more communicative than he had been when I left.  It was great to see.  It was a long night, but it was a good one, too.  I stayed at the hospital, in a hide-a-bed, and Annika stayed with me.

I'm not sure what caused the dehydration/vomiting in the first place - and that worries me some.  It could be several things, or a combination - who knows.  1) He could have had a touch of the flu, but he didn't have a fever.  2) We just started him on some new medication which can cause nausea, but shouldn't cause vomiting.  In people who respond to the treatment, it can cause tumours to shrink rather quickly, which could cause vomiting (as the brain adjusts) but Kol's only been getting it since Tuesday, and it's not supposed to work that fast.  3) The tumour itself, if it starts to grow too big, can cause vomiting as the brain has to adjust to the cramped space. 4) We ran out of one of Kol's supplements - one that is used to reduce inflammation.  We had ordered more but it took longer than expected to arrive, so he missed several doses of it.

Probably our biggest concern, however, is more pronounced weakness on Kol's right side.  We've noticed that he he hasn't been using his right hand as much in the last few days, and when he smiles or talks, the right side of his mouth doesn't move the way it should.  He had very pronounced right side weakness after surgery.  It's not as pronounced now as it was then, but it is noticeable.  He can make the muscles move on his face if he concentrates, however, and his grip strength is equal in both hands, so that is encouraging.

Thank-you again for your prayers, and we hope to see you at the healing service this Friday night.

Pain crisis

Kol is in rough shape right now - over the last 24 to 36 hours, he's been in more pain than usual, and for most of Friday had a constant headache.  He wasn't able to keep anything in his system - not even ondansetron (which is an anti-nausea medication).  

Kol had an appointment at the Cancer Centre yesterday morning, where he ended up vomiting all over the floor in front of the reception desk.  It didn't get much better after that.  Kol got some IV fluids, and some IV ondansetron, but it didn't help.  Kol had a rough night, and was in a lot of pain.  His headache was bad, and nothing would work.  It's been better today, but he's lost so much fluid, and he hasn't eaten, so he's getting dehydrated.

Kristen got a call from the pediatric palliative care specialist today (we were supposed to meet with her yesterday, but it didn't happen).  She does a lot of work with pain management, and said that she believes Kol is having a "pain crisis" so we discussed pain management strategies.  As a result, Kristen is getting ready to take Kol to the hospital in Outlook so he can get some IV fluids, and hopefully, we'll be able to get his pain under control a bit better.  We should only be at the hospital for a few hours.

Thank-you for praying for us.  If you can make it to the healing service on Friday night, we'd love to see you.

MRI time again

Kolbjorn's next MRI will be on September 7th at 8:00 am.

I'm actually looking forward to the MRI this time; it'll be good to know what is going on in Kol's head. Kol has been having headaches again recently, which obviously concern us some. I still long for the days when a head ache was just a headache. These are acute but they never last more than about 10 minutes (Kol is reading over my shoulder and told me I should change that to about 10 seconds). We don't even have enough time to get him Tylenol. Kol will sometimes have some water, and by the time he's done drinking it, he says his head is better. He has a high pain tolerance though, so I wonder if it really is gone, or if it's just not so acutely painful.

This MRI will be roughly 6 months since Kol's last treatment. One mom of another child who has the same type of tumour as Kol's pointed out that she had seen a pattern of relapse. Often, she said, new growth appeared on scans at 6 or 9 months post treatment. The kids who make it past the 9 month milestone seem to do better long term. We are headed into a crucial time. We know that every child, every tumour is different, and that Kolbjorn is in God's hands. Thank-you to everyone for continuing to pray for our family and for healing for our amazing son.