I was exchanging emails this evening with Suzanne Edison, whose daughter Flora also has JM. We met at the event in Carlsbad - I vividly remember seeing Suzanne and Flora cheering on Mamajoggers at, I don't know, mile 8-ish of the race. A part of the course where there weren't many spectators, and no other Cure JM folks. They were like a breath of fresh air at that moment when the 5 remaining miles of the race seemed waaaay too long.
Anyhow, I mentioned to her that despite the fact that everything seems to be going well for Mielle, the upcoming Chicago visit has me feeling pretty anxious. Her reply took my breath away, because it so precisely captured the muddle of feelings that I'm experiencing right at this very moment:
"Of course. It is so damn hard. The not knowing, the anticipation, the hope, the not wanting to go into despair, not wanting to be TOO hopeful either because falling off the "Hope Wagon" is awful. It is hard to find any place to rest. I think the Buddhists want us to find that middle ground where we hold suffering and joy as equal. But I am not very evolved.
breathe and run, I guess that's the best we can do for now."
Wow. Wow. She really, really nailed it. It certainly is hard to find any place to rest in all this. I am afraid of being too hopeful, and simultaneously afraid of falling into despair. Clearly, I am also not very evolved...
But I continue to breathe and run, breathe and run, breathe and run....
Monday, April 20, 2009
Sunday, April 19, 2009
Chi-Town, again
Please check out this blog post from a JDM dad:
http://blogonkevin.blogspot.com/2009/04/milestones.html
Really, really amazing. Made me cry (a lot) and does a great job of expressing some of the emotions inherent to dealing with this disease.
I'm preparing to take Mielle to another appointment in Chicago this week. I really can't believe it's been over 4 months already since the last trip. The rapid passage of time is beginning to freak me out! Mielle is continuing to do well, as far as I can tell (the pinkness I was noticing a while back didn't seem to amount to anything, thank goodness), and her Stanford doc is really pleased with her progress. So I'm hopeful that the news will be good this week, but... it's nerve-wracking nonetheless.
After successfully reducing her methotrexate dose so that it is more in line with her current weight (she has lost a lot of her steroid weight but the dose of the mtx had never been adjusted for that), we resumed tapering her prednisone. She's now on 3 mg/day (as opposed to 30 mg/day at the beginning). I am so grateful and relieved to have her on a lower dose of this drug; she still suffers some side effects, but it is nothing compared to how unbearable things were, for her and for us, at the higher dose. My understanding is that if all continues to go well, we will keep on tapering that drug until she is OFF it. I suppose I will find out more about that possibility at the appointment this week. Fingers and toes crossed. It would be quite a milestone to have her finally off the steroid, after more than 18 months.
Lucien is such a little walker now; he seems to consider it his job to walk laps around and around the house (with a big happy grin) from morning til night, picking things up and putting them down in random places as he goes. Although he is still significantly delayed in all areas of his development, he is progressing in other areas, too - he has a lot more words now, and mimics us all the time. (He recently learned "hungry" and he really likes that word a lot!) We recently added a new therapy to his repetoire - Occupational Therapy, which focuses on fine motor skills (stuff he does with his hands). It keeps us hopping to maintain his schedule of services, but we know that all the intervention he's receiving is critical to the progress that we've seen, and we're so grateful that it is available to him.
Mr. Delightful continues to explore his emerging stinky-two-year-old side, but he does it in such an adorable and endearing way that truly, it just makes him that much more delightful. Except when he looks deeply into my eyes, grabs a handful of my hair, and tugs HARD while simultaneously telling me "NO!". That is actually really, really annoying. Still, I'm already thinking about how much I'll miss him when we are in Chicago.
On the bright side, as far as our trip goes, I'm going to have the chance to see some old, dear friends - Nancy Poozy, Kristin, and Amy. Amy is flying to Chicago to meet us on Wednesday, after M's appointment, and we'll have until Saturday to play! Nancy and Kristin are driving down from Milwaukee on Thursday to spend the day with us. I am very, very excited to see them!
Wish us luck at our appointment.
http://blogonkevin.blogspot.com/2009/04/milestones.html
Really, really amazing. Made me cry (a lot) and does a great job of expressing some of the emotions inherent to dealing with this disease.
I'm preparing to take Mielle to another appointment in Chicago this week. I really can't believe it's been over 4 months already since the last trip. The rapid passage of time is beginning to freak me out! Mielle is continuing to do well, as far as I can tell (the pinkness I was noticing a while back didn't seem to amount to anything, thank goodness), and her Stanford doc is really pleased with her progress. So I'm hopeful that the news will be good this week, but... it's nerve-wracking nonetheless.
After successfully reducing her methotrexate dose so that it is more in line with her current weight (she has lost a lot of her steroid weight but the dose of the mtx had never been adjusted for that), we resumed tapering her prednisone. She's now on 3 mg/day (as opposed to 30 mg/day at the beginning). I am so grateful and relieved to have her on a lower dose of this drug; she still suffers some side effects, but it is nothing compared to how unbearable things were, for her and for us, at the higher dose. My understanding is that if all continues to go well, we will keep on tapering that drug until she is OFF it. I suppose I will find out more about that possibility at the appointment this week. Fingers and toes crossed. It would be quite a milestone to have her finally off the steroid, after more than 18 months.
Lucien is such a little walker now; he seems to consider it his job to walk laps around and around the house (with a big happy grin) from morning til night, picking things up and putting them down in random places as he goes. Although he is still significantly delayed in all areas of his development, he is progressing in other areas, too - he has a lot more words now, and mimics us all the time. (He recently learned "hungry" and he really likes that word a lot!) We recently added a new therapy to his repetoire - Occupational Therapy, which focuses on fine motor skills (stuff he does with his hands). It keeps us hopping to maintain his schedule of services, but we know that all the intervention he's receiving is critical to the progress that we've seen, and we're so grateful that it is available to him.
Mr. Delightful continues to explore his emerging stinky-two-year-old side, but he does it in such an adorable and endearing way that truly, it just makes him that much more delightful. Except when he looks deeply into my eyes, grabs a handful of my hair, and tugs HARD while simultaneously telling me "NO!". That is actually really, really annoying. Still, I'm already thinking about how much I'll miss him when we are in Chicago.
On the bright side, as far as our trip goes, I'm going to have the chance to see some old, dear friends - Nancy Poozy, Kristin, and Amy. Amy is flying to Chicago to meet us on Wednesday, after M's appointment, and we'll have until Saturday to play! Nancy and Kristin are driving down from Milwaukee on Thursday to spend the day with us. I am very, very excited to see them!
Wish us luck at our appointment.
Thursday, April 2, 2009
Family visit
Having fun with the fam. Nice to see all the kids hanging out! The big ones are so sweet with Lucien. He's just trucking all over the place, making messes everywhere he goes. Mielle's having fun, although having lots of people around all the time makes her a little... uh, edgy. And the kids were both up til past 11 tonight due to jet lag. Ugh.
Mielle has been looking a little pink to me lately, so I'm keeping a sharp eye on it but hoping it's nothing. (Pink could possibly equal inflammation, which is bad, bad, bad.) But overall, all is well. Pics soon!
Mielle has been looking a little pink to me lately, so I'm keeping a sharp eye on it but hoping it's nothing. (Pink could possibly equal inflammation, which is bad, bad, bad.) But overall, all is well. Pics soon!
Tuesday, March 24, 2009
... and chugging...
Just a quick update. Mielle is still doing well - her strength and energy are great. We stopped reducing the prednisone for a bit because we reduced one of her other meds, the methotrexate, by 40%!!! The dose is based on weight, and she has lost so much in recent months that we needed to make a major adjustment to that med. While I was glad to see it reduced, it is also incredibly nerve-wracking to make a change like that. It puts me on pins and needles, waiting to see if the disease will flare up. But, so far, so good. It's been about 6 weeks, and she just had labs (which means another nightmarish blood draw, but that's another story...) and all the tests look good, so hopefully we will continue reducing the prednisone soon.
Our next visit to Chicago is in April, and I'm absolutely tickled that the lovely Amy Annee will be joining us there for a visit after Mielle's appointment. We're going to have 2 whole days to play! I'm really looking forward to it.
Lucien is also doing well. He's a real little toddler now - he is more and more confident with his walking every day. He's also starting to find his inner 2-year-old and showing us a bit of a rebellious/stubborn/stinker streak... and we're thrilled to see it! (He's still Mr. Delightful!)
In other news, we are getting ready for a long-overdue trip to Virginia to visit Lenny's family. I don't think Lucien has met a single one of his cousins yet. Ouch. It's just been too hard to even attempt traveling since Mielle was diagnosed... but thankfully, things are better at the moment, so we are taking advantage of the opportunity.
Our next visit to Chicago is in April, and I'm absolutely tickled that the lovely Amy Annee will be joining us there for a visit after Mielle's appointment. We're going to have 2 whole days to play! I'm really looking forward to it.
Lucien is also doing well. He's a real little toddler now - he is more and more confident with his walking every day. He's also starting to find his inner 2-year-old and showing us a bit of a rebellious/stubborn/stinker streak... and we're thrilled to see it! (He's still Mr. Delightful!)
In other news, we are getting ready for a long-overdue trip to Virginia to visit Lenny's family. I don't think Lucien has met a single one of his cousins yet. Ouch. It's just been too hard to even attempt traveling since Mielle was diagnosed... but thankfully, things are better at the moment, so we are taking advantage of the opportunity.
Sunday, February 15, 2009
Still Chugging
Most of my blogging efforts have been directed at the mamajog site (www.mamajog.blogspot.com - read about our amazing race experiences!). My apologies for neglecting this one lately!
We've been slowly but steadily decreasing Mielle's prednisone dose. (Prednisone is the steroid that causes the most immediately dramatic and disturbing side effects - rage, excessive weight gain and puffiness, etc.) As a result, she is looking so much better; she's lost 10 - 12 pounds and is obviously way more comfortable without all that extra weight. She still has challenges with her moods/rage/etc., but not nearly to the same degree. Her energy and strength have been great lately.
We did hit a bump in the road when she developed an ear infection a couple weeks ago. It's weird, because she has never had ear infections, even as a baby - this was, in fact, her first one ever. She had to take an antibiotic and we had to skip her methotrexate shot for that week; the idea was to NOT suppress her immune system as much, so she could fight off the infection.
She's also been having more stomach problems lately. For several months, we seem to have controlled the nausea, etc. caused by her meds, by giving her ADDITIONAL meds for her stomach. For whatever reason, our regime doesn't seem to be working as well for her in terms of tummy trouble... so, back to the drawing board on that one.
But, overall, she still seems to be doing really well, and the disease seems to be under control. So, on we go...
On the Lucien side of things... big news! Lucien is walking, really walking now! Yippeeee! He's making progress on all fronts and it's so encouraging to see him toddle around. His second birthday is coming right up on March 4, and we haven't even begun planning his party! ; )
Love to all -
We've been slowly but steadily decreasing Mielle's prednisone dose. (Prednisone is the steroid that causes the most immediately dramatic and disturbing side effects - rage, excessive weight gain and puffiness, etc.) As a result, she is looking so much better; she's lost 10 - 12 pounds and is obviously way more comfortable without all that extra weight. She still has challenges with her moods/rage/etc., but not nearly to the same degree. Her energy and strength have been great lately.
We did hit a bump in the road when she developed an ear infection a couple weeks ago. It's weird, because she has never had ear infections, even as a baby - this was, in fact, her first one ever. She had to take an antibiotic and we had to skip her methotrexate shot for that week; the idea was to NOT suppress her immune system as much, so she could fight off the infection.
She's also been having more stomach problems lately. For several months, we seem to have controlled the nausea, etc. caused by her meds, by giving her ADDITIONAL meds for her stomach. For whatever reason, our regime doesn't seem to be working as well for her in terms of tummy trouble... so, back to the drawing board on that one.
But, overall, she still seems to be doing really well, and the disease seems to be under control. So, on we go...
On the Lucien side of things... big news! Lucien is walking, really walking now! Yippeeee! He's making progress on all fronts and it's so encouraging to see him toddle around. His second birthday is coming right up on March 4, and we haven't even begun planning his party! ; )
Love to all -
Friday, December 26, 2008
Great news from Chicago
Happy Holidays all. We recently got the results of the bloodwork from Mielle's latest Chicago visit, and the news was good. We seem to have finally hit upon a combination of meds that is keeping her disease in check. Hooooooooray!
We have been very slowly, very cautiously tapering her prednisone over the past few months, and so far she is tolerating the reduction without having a flare-up. Yay again! Her current dosage is about 6 mg/day, as opposed to 30 mg/day at the height of things. It is still a hefty dose for a small body, and she still experiences side effects, but much less extreme than what we saw over the summer. She has shed a few of her prednisone pounds and is still chubby, but not obscenely so. She still has mood/temper issues but, again, much more manageable. The taper continues and we are holding our breath and hoping that she can maintain as the dose comes down.
When I tell people the good news, they often ask whether this means she is in remission. The answer, unfortunately, is an emphatic NO. Remission means no meds + no symptoms, and we are most likely still years away from that even in the best case scenario. But at least the meds she is on are actually doing the job of controlling the disease. This was not the case earlier in the year.
Lately we have had glimmers of the "old" Mielle coming back. I suppose this may sound dramatic, but this is how I experience it, and how close friends have described it as well. For a long time I've felt as though I'm looking at my girl through frosted glass, or underneath deep water; I could recognize her, but just barely. Like there's been a barrier between her and the rest of the world. Lately it's as if, every now and then (and more frequently as time goes on) the barrier seems to melt away and in a comment, a gesture, a laugh, we get a glimpse of the true Mielle once again. I hadn't realized how much of her spirit had gone into hiding until I started seeing it come back.
Here are a couple of pics from Chicago:
Throwing a snowball at Dad. Apparently the kid's got quite an arm.
Learning to hula hoop at the Ronald McDonald House (have I mentioned how AMAZING the Ronald McDonald House is?)
Running is still going great (www.mamajog.blogspot.com), and I'm eternally grateful to the ladies who are joining me in this adventure - Kirsten, Stephanie, Nicole, and Claudia - as well as to all the friends, loved ones, friends of friends, loved ones of friends, etc etc who have so generously supported our effort to raise funds for research into better treatments for JDM. I hope that we will continue on this good path straight to permanent remission, but the fact of the matter is that we don't know what the future holds. Mielle and all the other kids with JDM deserve better treatments and a cure.
We have been very slowly, very cautiously tapering her prednisone over the past few months, and so far she is tolerating the reduction without having a flare-up. Yay again! Her current dosage is about 6 mg/day, as opposed to 30 mg/day at the height of things. It is still a hefty dose for a small body, and she still experiences side effects, but much less extreme than what we saw over the summer. She has shed a few of her prednisone pounds and is still chubby, but not obscenely so. She still has mood/temper issues but, again, much more manageable. The taper continues and we are holding our breath and hoping that she can maintain as the dose comes down.
When I tell people the good news, they often ask whether this means she is in remission. The answer, unfortunately, is an emphatic NO. Remission means no meds + no symptoms, and we are most likely still years away from that even in the best case scenario. But at least the meds she is on are actually doing the job of controlling the disease. This was not the case earlier in the year.
Lately we have had glimmers of the "old" Mielle coming back. I suppose this may sound dramatic, but this is how I experience it, and how close friends have described it as well. For a long time I've felt as though I'm looking at my girl through frosted glass, or underneath deep water; I could recognize her, but just barely. Like there's been a barrier between her and the rest of the world. Lately it's as if, every now and then (and more frequently as time goes on) the barrier seems to melt away and in a comment, a gesture, a laugh, we get a glimpse of the true Mielle once again. I hadn't realized how much of her spirit had gone into hiding until I started seeing it come back.
Here are a couple of pics from Chicago:
Throwing a snowball at Dad. Apparently the kid's got quite an arm.
Learning to hula hoop at the Ronald McDonald House (have I mentioned how AMAZING the Ronald McDonald House is?)
Running is still going great (www.mamajog.blogspot.com), and I'm eternally grateful to the ladies who are joining me in this adventure - Kirsten, Stephanie, Nicole, and Claudia - as well as to all the friends, loved ones, friends of friends, loved ones of friends, etc etc who have so generously supported our effort to raise funds for research into better treatments for JDM. I hope that we will continue on this good path straight to permanent remission, but the fact of the matter is that we don't know what the future holds. Mielle and all the other kids with JDM deserve better treatments and a cure.
Tuesday, December 2, 2008
Chicago again, already?
Apparently, it's been 4 months since Mielle's appointment with the JDM specialist in Chicago, because she and Lenny left this morning for her follow up appointment. I have received word that the plane has landed, and Mielle threw up on take off and descent (she suffers from motion sickness, poor thing) but she took it in stride.
So that leaves Lucien and me floating around the house by ourselves for a couple of days. Kind of nice, actually; I've been working so much the last couple of months that I feel I've hardly seen him. I'm a little anxious about the appointment, but Mielle has been doing really well lately so mostly I'm hopeful that everything will still appear to be on track.
Mielle is hoping for snow in Chicago, and I hear there is a storm forecast for tomorrow. Her Nanay Rose (Lenny's mom) bought her a nice puffy coat as well as hat, scarf, gloves, etc. so she is prepared!
Running is going GREAT. Better than I ever hoped possible. In fact, I'm starting another blog dedicated my running experiences, and those of my fantastic, amazing, supportive friends and other mamas who jog. It's still a work in progress, but check it out: www.mamajog.blogspot.com
So that leaves Lucien and me floating around the house by ourselves for a couple of days. Kind of nice, actually; I've been working so much the last couple of months that I feel I've hardly seen him. I'm a little anxious about the appointment, but Mielle has been doing really well lately so mostly I'm hopeful that everything will still appear to be on track.
Mielle is hoping for snow in Chicago, and I hear there is a storm forecast for tomorrow. Her Nanay Rose (Lenny's mom) bought her a nice puffy coat as well as hat, scarf, gloves, etc. so she is prepared!
Running is going GREAT. Better than I ever hoped possible. In fact, I'm starting another blog dedicated my running experiences, and those of my fantastic, amazing, supportive friends and other mamas who jog. It's still a work in progress, but check it out: www.mamajog.blogspot.com
Subscribe to:
Posts (Atom)