Wednesday, December 9, 2015

Long Haul

December already….and this is only my second blog post of the year.
Not because  nothing worth mentioning has happened, just because life is hectic and it has been a while since I’ve had the time or the energy to write an update!

Our family has moved from an acreage to a nice new house in town. At times I miss my acreage but the convenience of living close to work and school, plus our beautiful new house totally makes up for that. No more scary drives home, no more maintenance to our cute but older house, just a nice clean convenient fresh start. Moving from an acreage to a house in town meant purging,purging and purging. You would think after moving an entire  household to a different continent would have taught us not to accumulate too much stuff….but it didn’t!

My beautiful girl has graduated from high school and is now just wrapping up her first semester in college. Her goal is to become a teacher, bachelor in education, with social studies as a major and art as a minor. She’s living in residency and she is made for college. She loves it, works hard and does great. Her health is stable so that’s wonderful.

My boy, he just turned 17 last week….he’s not quite where he would like to be when it comes to his health. He has an after school job, his social life seems to be busy, he played football for the season and seemed to really enjoy it. No issues there. 

He misses about a day a week of school because he feels miserable. Over the summer we have been doing a lot of digging to see what the underlying causes for his physical discomfort may be. He has been examined by an immunologist,we tried eliminating certain foods from his diet, blood work, urea-breath tests and re-tests, he has had a dexa scan, he has done a breathing test, has had MRI’s done of his wrists, has worn a splint for his wrist, a check up with the ophthalmologist,luckily his eyes are clean...probably a bunch of more things that I can’t even remember. 
His blood work showed he has a bacteria in his system that can cause nausea and discomfort. He has been treated for that, twice, with no success. He starts to now be physically sick after he takes his Methotrexate ( Chemo). His specialist is worried that the bacteria is impacting him more than the chemo is, but another round of antibiotics is not recommended ( and it is a nasty cocktail, 3 different pills, twice daily for a week. those pills look like horse pills.) but losing this much school is also not desirable. It is also impacting the treatment options: in hopes of preventing some nausea the doc decided to lower the Methotrexate dose and discontinued the Sulfasalazine. A bonus for him, because he hates taking his pills with a passion, but potentially not so great for his arthritis, but we shall just wait and see. At his last visit his joints were fairly clean so lets hope we do not get a set back. His hands still look bad, but there is no fluid in his joints.The swelling that is visibly there is permanent; his knuckles are deformed. It bugs him but for now there is nothing they can do about it. Maybe in the future if and when his arthritis is controlled, and he is done growing, surgery may be an option. The doc has referred him to a gastro-intestinal specialist to see if there are options to tackle the bacteria that is wreaking havoc on his body at the moment. In the mean time; school is hard and demanding. Being sick so often and always having to come from behind and having to catch up is starting to take its toll. Long story short: not good.  

Christmas is coming up and a new year is approaching, let’s hope next year will be the year we find a solution that works for my boy, he sure deserves a break.

In the mean time: have a wonderful December month and may the new year bring nothing but good!


  1. Laeta, what a story you tell... Good to read that Merel is doing OK and that's great!, but sad to read that Koen is not... What a tough time he has to go through. It's such a fine boy and he doesn't deserve to go through all of this. But then again, nature goes its own way. Unfortunately for Koen this isn't a good way. You do such a fine job to make sure that Koen gets the right treatment and I hope for Koen that next year the doctors find the right cure for him. Hope you have great hollidays. XXX Love ya'all Moon