The Clip-Date

Happy New Year!  We had two whole weeks with the boys over the holidays...we were so happy!  We hope that you, dear ones, had a great holiday season as well! So.  Did you know that long-term steroid use can cause your eyeballs to retain fluid to the point that their shape actually changes?  Yeah, we didn't either.  It must be one of those details (side effects) that they deliberately leave out of the newspapers.  (Forgive me a movie pun.)  Apparently, and quite logically if you think about it, the eyeball changing its shape negatively affects vision.  Another lovely gift from Prednisone.    Andy's vision has been getting slowly worse over the last few months, so last week he saw a neuro-ophthalmologist.  She was one of the most patient and kind doctors we've seen yet!  We knew that the disease had caused him to have nystagmus (rapid, uncontrolled eye movement), but she confirmed that he now has cataracts in both eyes.  He ...

I need to start by saying that we are very thankful for the wonderful Thanksgiving that we had.  Yes, that's a lot of "thanks" going on, but it really was perfect.  We had a lot of time with our boys and we were also able to spend some time with my dad, Andy's folks, and Andy's sister and her family.  One of the lessons that this journey is reminding us is that nothing is guaranteed, so we now hold time with our loved ones even more tightly than before.   Last month, Andy dropped his daily steroid dose to 17.5mg and he did well, so this last Sunday, December 5, he dropped to 15mg daily.  Unfortunately, this morning he woke up with increased numbness and difficulty using his left hand and foot.  It's too early to determine exactly what is going on.  Occasionally he has a flare and things will be worse for a few days and then subside, so that could be what he's dealing with now.  On the other hand, the left side of his body is the side that is ...

Things have been progressing in a stable, predicted manner - that suits us just fine!  Here are the highlights... Andy's September 24 infusion went well.  As expected, the fatigue was crazy for a few days afterward, but he spent the weekend in bed he was able to return to work with no problems.  In early October he dropped his daily steroid dose from 20mg to 17.5mg.  Thankfully, there haven't been any noticeable changes.   Two weeks after the steroid drop, he was able to discontinue his prophylactic antibiotic.  Now that he's on a lower steroid dose, he's less likely to develop some of the infections that they were concerned about.  Hooray for one less medication! Tomorrow, November 7, he will drop down to 15mg daily.   We're very pleased that things have been going according to plan.  As I've mentioned before, this will be a long year as they play with the meds to find the right fit for him.  The hope is that eventually he can...

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...