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As the weeks have progressed with this T-cell trial Jake has had increased leg pain. As I’ve mentioned, it hasn’t required medication just lots of warm baths. I think back to a year ago when he was on a morphine drip and how awful that was and we are far from that but it has been progressing and there has also been some tummy pain off and on this past week. Monday night Jake’s abdominal pain worsened and his tummy was tight and distended so we called in to our Doc and the research floor and made plans to get him in first thing Tuesday morning. We were worried (obviously) and all symptoms have to be reported for the trial. They did and x-ray and ultrasound and we were devastated to find that there was progression of disease. There were lots of new liver lesions and the previous lesions had doubled in size, and there was also a newly affected lymph node. We were praying the T-cell trial would push back his disease or at least allow him to hold tight. We drove home in tears wondering what we may have done to our son over the past 6 weeks… thinking how he doesn’t have time for set-backs, that progression means lack of response, which means ineffective, which means pull him from the study and move on. We made plans to meet on Friday to dissect the few trials Jake may be a candidate for and come up with our next step. In preparation for today’s meeting, the past two days have been a throw back to college cramming and moments of panic as this is so much more than just studying for an exam. All of these trials are in medical terms and I’m not medical! Two laptops, a medical dictionary, highlighters, pens, sticky notes, trial documents strewn all over my kitchen table, and LOTS of coffee are all I know of the past 48 hours. And that brings me to today, Friday. This morning we met to begin planning the next leg of Jake’s journey and while things are a bit more clear, we are in limbo for a little longer. Much of what we will decide depends on next week’s scans and biopsy. What we did learn today, which may be a little silver lining in all of this, is that Jake’s T-cell counts have shot up and are expanding beautifully. Talk about heads spinning. Frankly, this leaves all of us confused, very surprised and cautiously hopeful. The T-cells only expand (multiply) if there is an environment in which they can do so – meaning if there are cancer cells it can feed off of, then they live and grow. And this may very well be the source of his pain. What we saw in Tuesday’s tests was not pretty but we really don’t know anything more until next week. IF!!!… Jake’s boney disease is indeed responsive, everything changes! We will rethink the organ progression and the role that it plays in the future of Jake’s participation in this trial. Tuesday, we walked out crushed and today there is a tiny ray of light trying to make it’s way through the clouds. We choose the side of optimism and HOPE! We walked out with a couple of “if this, then that” plans and we have our top couple of hospitals that we’ll be contacting this week to open the lines of communication. It feels like we’ve been in this storm for way too long and the life of “limbo” has returned in a big way. I find myself wanting to fast forward to next week but then remind myself that next week will pass quickly and this cancer world is unforgiving when it comes to time. So we’ll wait and take the days God is giving and just keep praying that everything will be alright. https://www.youtube.com/watch?v=Dn7pWm4i0ZU Storm by Lifehouse
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