Today marks our fourth month back in the States together since our journey began. It is hard to believe it has been that long. For once I don’t think I can say that it feels like time has flown by. It is good to think that we are 8 months into our 3 year treatment.... only 2 and half more years to go.
Rafiki is doing very well. I never thought I would be inspired by a 2 year-old. When Rafiki isn’t feeling the side effects of the chemo he is running around acting like a typical 2 year-old boy. He loves trucks, all emergency vehicles especially fire engines, animals- he does a great horse impression, and golf.
He loves being outside and as soon as he is done eating breakfast usually asking to put his shoes on and go outside. He is great about his hat and remembers to put it on himself. He gets more grumpy when you try to take it off then put it on. He has lost his hair again. After his first intensive round of chemo was finished he started growing back a bit of the fuzz but with our second round he has lost it again.
I started to get use to him with his fuzz and because of his great attitude would often forget about him being sick, it is truly what a few minutes or even seconds of forgetting can do when this situation weights on you constantly. He has a wonderful hat a girlfriend and I picked up at a second hand store with fish on it he gets compliments on it every time he wears it.
You hardly see other kids wearing hats and especially not inside. When we do get a compliment I remember the secret that is lurking below. It is a strange symbol or our situation.
Our last big test for remission that we had done in England was inconclusive about Rafiki’s remission. Which I am trying to remind myself is a neutral statement. That is just means it isn’t clear whether the Leukemia is gone completely or not. It has definitely stopped growing but gone is another story ( well that is my shallow understanding of it). Because of that result both the doctors in the UK and here recommended we do two blocks of Delayed Intensive (DI) chemo.
Basically, what that means is two blocks of 2 months of chemo with a small break in the middle to make sure he is strong enough to move onto the next block. This is where we are now. Rafiki finished his first DI the end of August. He did well and had very few side effects which we are grateful for of course.
The treatment during the DI includes:
• oral meds daily and weekly
• spinal taps-with injection of chemo drugs into the spin- a minor surgery that Rafiki goes under for
• injections into his leg
• infusion- this is where Rafiki is hooked up to a “robot” (as they call them in England) and has a few hours of being connected and chemo drugs pushed into him.
Not to mention constant blood test.
Infusion is usually an old day process. Rafiki usually gets his own room and is able to watch TV, sometime he feels like being mobile and will walk around the day ward if he is allowed. It is an exhausting day for us all. Even though I rarely get to go these days I spend the entire day worrying and wondering how it is going.
Patrick is amazing. He is so calm and focused. His entire attention is focused on Rafiki and what he needs. He still manages to keep him disciplined which I have a lot of trouble not to mention consistency. I don’t know how parents do it without military training. Patrick’s sleep deprivation drills in the army are paying off again. I think if he could get a week off from his duties he would sleep straight. He is running on high at all times, predicting and anticipating everything.
The boys have a lot of fun together. Rafiki often turns to his Dad for help when I can’t understand him. Patrick is much more fluent in “Rafiki speak” than I am.
I am working 6 days a week now which adds to the challenge, one I didn’t really expect. I work 5 days at the The Longmont Times-Call and 1 day, Mondays my day off from the paper, teaching at the Art Institute of Colorado in Denver. I love both jobs but is really hard to focus on both.
I am teaching a basic photojournalism class for the first time this quarter. Being a first time teacher my students are getting away with a lot, partly due to me being new and the other part due to my lack of organization. The students are great. I was a bit nervous about getting started as this is a required class and this is an art school. I imagined a lot of students wouldn’t be to into but this quarter all seem to be making a concerted effort and excepting the challenge.
We recently had layoffs at the paper and the photo department luckily escaped but I we won’t the next time. Being the last hired I am a bit concerned.. I guess more than a bit as our insurance is tied to work. Newspapers are dying everywhere and we have discussed it amongst ourselves and realize that probably this is the last newspaper job we will have. With that idea running through my head I am trying to make a good impression at the college. I think I would really enjoy teaching there more but I also would like to have one foot in the newspaper staying current with news and the trends.
I had the privilege of covering the Democratic convention when it was here the last week of August. Unfortunately, I wasn’t credentialed to be on the floor at the Pepsi Center or go to Mile High. I got to be in the thick of it on the streets and I also was able to help out one of our photographers who on the floor for all the excitement. I got to hang with the media and be around the excitement and run into people like Al Sharpton and Ralph Nader.. probably a few others but had no clue who they were.
For the first time in my voting history I really do feel excited about voting. I don’t feel like it is the lesser of two evils which is what I have always heard from my parents growing up ever since I knew what a president was.
The first day of the convention I was teaching. When I left the college a riot was breaking out just a few blocks away. I quickly got to a parking spot and was able to get some shots and witness the scene for myself... another blog for another time!
So needless to say as exciting as it all was I didn’t see the family much. I never expected the challenges of coming back into this career with a family. Patrick is extremely supportive an encourages me to do my best work no matter how long it takes.
So we have been adjusting. I had the first month we were home off to help us try and get settled in. In my usual style I was trying to do to much with little time and often made things hectic for the house hold. It was great to have real time together in our own space. Rafiki was quite strong when we arrived and we were able to to do a bit of socializing when we got back. Everyone was thrilled to see him.
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