The Clip-Date

On September 10, Andy had his first Rituxan infusion and it went well.  He was itchy and extremely fatigued for a few days afterward, but thankfully he seems to have avoided the more serious side effects.  We're hopeful that his second infusion, tomorrow, will go similarly.  We anticipate the fatigue this time so we've cleared his schedule for the next two days; he'll likely spend most of the time sleeping.   On Thursday, September 30, he will see his primary neurologist again.  If he continues to remain stable, he'll resume tapering the steroids on October 7, but this time by only 2.5mg month; it's a much slower pace now.  They will monitor him closely and if his symptoms return at any time, they'll bump him back up/adjust as needed.   If nothing pops up between now and then, they are planning another round of MRIs in January.  We're hoping for a nice, calm, status-quo holiday season.  Fingers crossed!  

Yesterday, we found out that we've been approved for aid from the manufacturer of Andy's new drug!  Praise God!  I literally cried tears of joy when I received the phone call.  Because the aid is just for the drug itself and will require us to go through UCSD, I spent most of the day on the phone, confirming coverage for all of the other components involved with the infusion process.  Everything seemed to be falling into place and today we were to call and set up the appointments. Andy had the day off but due to errands and whatnot, we didn't actually see each other until around noon.  We had lunch and knew that we needed to start scheduling things, but neither of us really wanted to deal with it so I said, "Let's go to the beach!"  If you know me, you know what a big deal that is - I don't typically do the beach.  He jumped at my willingness to go, so we drove to Torrey and spent a few hours walking, relaxing and swimming...it was lovely!  I was ...

Last time I wrote, we were praying that we'd get timely approval (from our insurance company) for Andy's new medication.  Sadly, a month has gone by and that hasn't been the case.  We are now on our third appeal, and all of the neurologists on his team have written and asked for a case review by the insurance company's "rare diseases panel."  (At least there is such a thing.)  In case that doesn't work, we've also applied for aid directly from the drug manufacturer, a program that UCSD referred us to.   Hopefully something works out, and soon.  The steroids are keeping his symptoms relatively stable, but the side effects are really getting to him as he's been on high doses now for over seven months.  Keep praying, dear ones!

I'll start off with a bit of happiness!  We just got back from three wonderful weeks in New Mexico!  We have friends-who-are-family that live there, so it's worth braving the icky desert each summer.  The boys joined us and we spent two weeks house-sitting for our friends while they were on vacation; then we stayed with them for a week when they got back.  Family time, best-of-friends time, and lounging in the pool multiple times each day?  Yes, please!  The heat did exacerbate Andy's symptoms a bit so he had to be careful, but the down-time was just what all of us needed.   Unfortunately, we came back to a little hiccup in Andy's treatment plan.  His doctors want him to start the new drug (Rituxan) ASAP so we were planning to get him in for the first infusion within the next week or so.  Unfortunately, our insurance company has denied the drug, saying that it "isn't approved for someone with his condition."  On the one hand, I unde...

UCSD reached out and informed us that they wanted to see Andy sooner than his scheduled (early June) appointment.  As a result, we went in and met with the head honcho today.  Here is the latest... They are pleased that his tests (in April) yielded positive results and that he remains largely stable.  They want to start lining up the next drug(s) since, as I mentioned before, he's currently at a steroid level where he could start seeing symptoms increase. He is to continue with this dosage through June and in July they will begin him on infusions of a drug called Rituxan.  Then, approximately four to six weeks after the infusions, he will resume his steroid taper.  The hope is that the Rituxan will allow him to wean off of steroids completely, or at least allow him to stay on a very low dose.  They've warned us that it could be some time before we find the particular pharmaceutical cocktail that will work best for him.  This round of tapering will take...

Today we received the final results from the LP; there is no sign of any cancer/leukemia!  Praise Jesus!  They are now more comfortable moving forward with CLIPPERS as his diagnosis. After a rough transition last week, Andy is now feeling fairly stable on his current steroids dose (20mg daily).  There hasn't yet been any increase in symptoms, so we are hopeful. As we look forward to beginning another month, and yes, we are taking life in small chunks these days, we have a couple of specific areas that you could keep in prayer. Naturally, we continue to pray that he will do well at his current med level.  According to the neurologists and based on what limited information there is about this disease, he's at a steroid level now where he could start to see a recurrence of symptoms.  Let's just see if we can avoid that, shall we? We would also ask for prayer that we would have wisdom as we research next treatment options.  Andy will see the UCSD team in early ...

I know that I've been sharing a lot lately, but it feels like we have a number of plates spinning and it helps me to write, to put things into words.  Thank you, dear friends, for your patience.  Happily, this one is all good news! First and foremost, today's LP was a success!  The doctor (a new one, not Kathy Bates) had clearly read Andy's chart and was well prepared.  He took extra steps to make Andy comfortable, and he collected more fluid than was necessary so that if they want to throw in any additional lab testing, they will have extra fluid and they won't have to call Andy back.  After his experience last time, this doctor was such an answer to prayer! We also received the latest MRI results: His c-spine doesn't show ANY lesions or areas of active inflammation. His t-spine has some remaining lesions but no new ones, and no active inflammation. His brain does have one remaining lesion, but it is smaller than it was on the last scan and the others "appear ...