The Clip-Date

It's been a minute, so I thought I'd post the latest... That crazy heat-wave that we just had?  Yep, it caused Andy's symptoms to flare.  We used our little, portable A/C unit and that made a big difference for him; he quickly returned to his baseline.  A huge shout out to our friends who gave it to us! The trip to Munich was a success.  He had a little mishap with one of his medications and he did catch a good cold, but he slept most of the weekend when he returned and then started to feel normal again.  The timing was perfect; the return of the B-cells likely aided him in fighting off the cold.  Yay for the little things. The infusion on 9/7 went well, with only the expected side effects ( fatigue and itching ).  While they are annoying, it's so much better than some of the other ones, so we'll take it.  By now he should be B-cell free again. As always, we continue to pray for his fatigue and that he'd have the energy that the needs.  It se...

I haven't posted for almost two months, and that's a good thing!  Time lapses typically mean stability and for that, we are ever thankful.  As expected, the heat has indeed caused a few flares for Andy over the summer, but they've been manageable.    The latest labs show that Andy's body is finally producing B-cells again, so it is time to suppress his system.  They've scheduled his next infusion for September 7.  We expect that it will go well, as it did last year.  The biggest side effect ( so far ) is that he gets crazy tired afterward; last time he slept for almost two full days following the infusion.  Still, that's a small price to pay for a drug that works! Just two prayer requests this time... On the 14th, he will be traveling to Munich ( for work ).  This is kind of a last-minute trip so he's been working a million hours trying to prepare.  Please pray that all goes well and that he remains healthy.  He's specifically conce...

Andy has now been off of steroids for five weeks and thankfully, we haven't seen any significant uptick in his symptoms.  As if that wasn't enough good news, last week he had repeat MRIs of his brain and c-spine; there is no sign of active inflammation and his lesions have remained clinically stable.  We're starting to think that the Rituxan is indeed going to be the thing that really helps him.  It's actually hard to believe that we've gotten here, it's been such a long slog since all of this began.   For now, we are to continue to monitor his symptoms and let his team know if anything changes.  They will recheck his B-cells in July and let that guide them as to when to go ahead with the next infusion.   Here are today's prayer needs... Pray, as always, for his fatigue.  It seems like it is here to stay, and at times it makes keeping up with everything difficult. Pray that he is able to stay off of the steroids.  Self-explanatory...they...

It's hard to believe that it's May already...time really does fly.  As stability is looking more and more like something that is actually going to be attainable, I've started to enjoy bullet points.  I think I'll stick with them for a while; they really do keep things tidy.   I cannot articulate just how happy we are to report that Andy has been completely off of steroids for eight days now!  I know that it's still early, but that is such huge an answer to prayer!  He had been on them for over a year and a half, and his body really could use the rest. If things remain calm, he will have another set of MRIs on June 2nd.  They want to make sure that there are no new lesions and or signs of active spinal cord inflammation now that he isn't on Prednisone.   Last week they rechecked his B-cells, again, and he still doesn't have any!  The Rituxan really does seem to be doing its job.  They'll recheck again in July.  It's nice to kno...

It's always a good day when there is happy news to report... On the 5th, Andy dropped to 5mg daily of Prednisone.  So far, so good!  He's had a few tiny flares but it's been very manageable.   Our insurance company finally approved his next infusion!  Huzzah!  It's such a relief to know that when his B-cells start coming back, he won't have any delay in receiving treatment.  After a few small hurdles, he was able to start his bone density med this morning.  They say that pain in your large bones can be a side effect and after only few hours, his legs are already sore.  We'll see how that pans out, but we're glad that he's begun and hope that it really does make a difference in his density levels. His optometry visit last month showed that his vision has actually improved since his neuro-ophthalmology eval in December.  He now has two pairs of glasses: one for reading ( close-up ) and another for work/computer use ( mid-range ).  His...

I had hoped to wait a bit longer before posting again, yet here I am.  I'll be quite quick .  Andy had his annual DEXA scan on the 11th and today we got the results.  While he doesn't technically have osteoporosis, he is well outside of normal limits and has "significant bone density loss" compared to last year's baseline scan.  The steroids have done their damage, so now he is to begin regular osteoporosis medication with the hopes of slowing/preventing further loss.  His B-cell levels were checked and he still literally has none, so the Rituxan seems to be doing its job.  They'd originally estimated that he'd needed another infusion in March, but as his immune system is still suppressed, they are going to hold off for now and redo his blood work in May.   Next week he has an appointment with an optometrist to see about getting the long-awaited glasses!  He's at a low enough steroid level that the refractive power of his eyeballs should...

Since he dropped (his steroid level) to 10mg daily last month, Andy has done quite well; thankfully he hasn't seen any significant increase in symptoms.  Our fingers are still crossed, but so far, so good!  On February 1, he had a repeat set of MRIs and this morning we received great news: Brain:  He still has a few remaining lesions but they are similar in appearance to his previous scans and there are no new lesions detected. Cervical Spine:  There is still one decent-sized lesion, but it is less pronounced than in the last scan.   Thoracic Spine:  There continue to be some areas of demyelination there, but they, too, are less pronounced and decreased in size than on the last scans.  No new lesions are observed.  While we would obviously love clean scans, receiving news like this is very welcomed.  If you recall, before he started treatment, he was losing is ability to walk, see, and having a host of other difficulties.  When look...