Friday, July 2, 2010
Saturday, May 22, 2010
It's Pip Squeak Day!
All the errands have been run, prizes collected, volunteers lined up, flyers printed, last-minute details locked down. We're ready for the event and EXCITED! In all the planning, I kinda forgot how much FUN it's going to be!
Here's a shot of the hard copy newspaper:
Friday, May 21, 2010
Another Pip Squeak and some Press
We've been running around frantically preparing for our big Pip Squeak A Go Go benefit for Cure JM (details). Today we managed to get a little local press, which makes me soooo happy. I just wish I could figure out how to make this story catch on in a bigger way... I'll keep trying. In the meantime, I'm excited for the event tomorrow and I hope we are able to raise loads of cash! And I'll be saying it many times, in many ways, but I may as well begin now: THANK YOU to everyone who is helping, donating, volunteering, and attending! Here's the post about last year's event...
Friday, May 14, 2010
Another case in Alameda
About a month ago, I learned that there is a third known case of juvenile dermatomyositis here in Alameda, a six-year-old girl. Our small city of about 75,000 has three cases of a disease that is normally found in three kids out of a MILLION.
I couldn't really even write about it for a while because it just hit me like a punch in the gut. I felt simultaneously shocked, frustrated, and just very, very sad to think of another little girl, another family and all they will have to go through. I won't lie; sometimes it all just seems so... bottomless. Yet we have to keep moving forward, even if it's one teeny tiny little step at a time.
Through this, though, I was actually happy about one thing. The reason that I learned of this in the first place was the Pip Squeak A Go Go benefit we did for Cure JM last year. A friend that was involved with the event has a daughter at the same elementary school as this newly diagnosed girl, and through conversation with the girl's mom, she was able to connect the dots and realize it was the same disease. If we hadn't done that event, then we would never know about one another. And connecting with one another is powerful. So I feel really good that our efforts have paid off in this way. We are working hard on another event right now - it's coming up May 22 - and this experience has been really motivating to keep on chugging with this kind of thing. It really does make a difference.
I dearly hope that we can pull in even more people (and hopefully raise even more money) than we did last year. We're doing our best.
I couldn't really even write about it for a while because it just hit me like a punch in the gut. I felt simultaneously shocked, frustrated, and just very, very sad to think of another little girl, another family and all they will have to go through. I won't lie; sometimes it all just seems so... bottomless. Yet we have to keep moving forward, even if it's one teeny tiny little step at a time.
Through this, though, I was actually happy about one thing. The reason that I learned of this in the first place was the Pip Squeak A Go Go benefit we did for Cure JM last year. A friend that was involved with the event has a daughter at the same elementary school as this newly diagnosed girl, and through conversation with the girl's mom, she was able to connect the dots and realize it was the same disease. If we hadn't done that event, then we would never know about one another. And connecting with one another is powerful. So I feel really good that our efforts have paid off in this way. We are working hard on another event right now - it's coming up May 22 - and this experience has been really motivating to keep on chugging with this kind of thing. It really does make a difference.
I dearly hope that we can pull in even more people (and hopefully raise even more money) than we did last year. We're doing our best.
The news is good news
Labs back from Chicago; all looks good so the tapering continues. Mielle is now on very small doses of both methotrexate and prednisone, and if all continues to go well then she should be totally off both of them within a few months! That will leave one heavy-duty immunosuppressant, Cellcept. (That's the one that's used for transplant patients so they don't reject the new organ). She'll still be on that for some time to come, but that one doesn't seem to really cause her any troubles, so it's not that bad.
AND we found another way to give Mielle her required calcium. We've tried many different types of supplements, from calcium gummies to calcium creamies, and she's pretty much hated them all. I don't know why I never noticed them before, but finally I got her some of the chewy chocolate kind - like tootsie rolls - and she actually likes them! After trying one, she said, "Yay, now I don't have to dread taking the calcium anymore!" And she really did DREAD it. It seems so weird, with all the stuff that she has to take, that the CALCIUM would be the thorn in her side. But there you have it.
AND we found another way to give Mielle her required calcium. We've tried many different types of supplements, from calcium gummies to calcium creamies, and she's pretty much hated them all. I don't know why I never noticed them before, but finally I got her some of the chewy chocolate kind - like tootsie rolls - and she actually likes them! After trying one, she said, "Yay, now I don't have to dread taking the calcium anymore!" And she really did DREAD it. It seems so weird, with all the stuff that she has to take, that the CALCIUM would be the thorn in her side. But there you have it.
Friday, April 16, 2010
No news is good news
The transition out of injections has been smooth. Still tapering meds, ever so slowly. The disease is still quiet.
Lenny and Mielle left today for Chicago.
I'm not as nervous as I usually am, but I'm still a little nervous.
Everything is going well, but... still.
Fingers are staying crossed.
Lenny and Mielle left today for Chicago.
I'm not as nervous as I usually am, but I'm still a little nervous.
Everything is going well, but... still.
Fingers are staying crossed.
Friday, January 22, 2010
"No Shot" Fridays have begun!
Yippeeee! It's official - no more weekly injections!
We had to celebrate this milestone, so Mielle invited some friends over for pizza and a movie, and a sparkling juice toast to No More Shots. The party was a huge success - a high-decibel gigglefest! It was the first Friday in nearly two years that did not end with an injection for my girl.
We're now giving her the methotrexate orally, and will reduce the dose each month as long as things are going well. It's been about three weeks now, I guess, and it is AWESOME. We just squirt the med on a spoon, pour some blueberry syrup over it, and down the hatch. What a difference...
We had to celebrate this milestone, so Mielle invited some friends over for pizza and a movie, and a sparkling juice toast to No More Shots. The party was a huge success - a high-decibel gigglefest! It was the first Friday in nearly two years that did not end with an injection for my girl.
We're now giving her the methotrexate orally, and will reduce the dose each month as long as things are going well. It's been about three weeks now, I guess, and it is AWESOME. We just squirt the med on a spoon, pour some blueberry syrup over it, and down the hatch. What a difference...
Saturday, January 2, 2010
New year, more progress
Mielle and I went to Chicago again for an appt on Dec 9. The trip was a raging success in many ways - we had SO MUCH fun with Amy, who once again flew from NJ to spend time with us in Chi-town, as well as Kristin and Nancy who made the treks from Madison and Milwaukee, respectively, to see us. But more importantly, the doctor appointment went really, really well.
Everyone was thrilled with how well Mielle looks, and I got a little emotional, thinking of where we were a year ago, 18 months ago, two years ago... ugh. For a while there, it was looking uncertain as to whether we would ever get to the other side of this thing. And of course, we're not on the other side - yet. But things are looking better and better for our chances of getting there.
I vividly remember our first appointment in Chicago, when Mielle was a giant steroid puffball, her skin was a mess, and she was completely miserable in every way. She looked terrible, and she felt terrible, both physically and emotionally. Appointment day is a long day, especially the first-ever, and it was all I could do to help her get through the day with minimal outbursts of rage and/or crying and/or screaming. We were prepared - we had tons of activities (including a special backpack loaded with fun stuff that our friends from Mielle's pre-school had given us) and snacks, etc. but it was still incredibly difficult. Mielle did NOT want to be there, and she made it clear. She barely spoke (unless grunting and growling counts) and she'd play with one thing for a short while, then fling it away and thrash around on the examining couch, ripping up the overlying paper to shreds. The room was a complete shambles by the time Dr. Pachman actually made her appearance, and Mielle looked like a wild animal. It was horrible. I was barely holding it together myself, between trying to manage Mielle and my own emotions, while still absorbing all the information presented, asking the right questions, etc. I remember this sensation, this feeling of "how did we ever, ever get HERE?"
JDM is the only disease treated at that clinic, so when you see another family there, you know they have the same thing. I remember another mom and daughter there that day. The girl looked a little older than Mielle, and there were no outward signs of the disease, or side effects from meds. She wasn't unhappy; she was calm and pleasant, having a conversation with her mother. They simply seemed normal. While for us, things felt about as far from normal as you can get.
I could feel the other mom looking, trying to catch my eye and start a conversation, share experiences and perhaps offer support, but I just couldn't return the gesture. I felt on the verge of breaking down at any moment, and had to focus all my energies on simply holding it together. Somehow, that openness from another mom, that act of kindness, was too much to bear. I just... couldn't.
All of this was running though my mind during this last appointment. This time, Mielle looked great, felt great and (while she is still on a truckload of intense medication) things mostly seem normal again. It was all smiles from the various people passing through - the nurses, the physical and occupational therapists, the volunteer parent liason Jacqui, etc. Mielle was a little impatient about being there, but she answered questions, cooperated with the exams, and was mostly concerned with running to the window to look at the falling snow (exciting for a California girl!) and speculate whether it would cause Amy's flight to be delayed. When one of the nurses mentioned almost in passing, as she left the room, that Mielle looked great and "we need to get her off some more of these meds", I cried.
The door stayed open when she left, and across the hall, in another exam room, I could see a boy around Mielle's age, with his mom. He was very cushingoid, puffy and cross, flaming red cheeks, not talking, and the mom was laying on the exam table with him, just trying to comfort him. It broke my heart.
As we were leaving, we passed yet another family in the hall. Another sad-eyed child, exploding from steroids. Another prent, this time the dad, looking haunted and grim. We got on the elevator together, and I looked hopefully at the dad, trying to catch his eye, give him an encouraging smile, maybe share experiences. But he couldn't look at me. And I utterly, completely understood why.
So, the fight goes on. Mielle is doing wonderfully, for which (obviously) I'm extremely grateful. But our journey is not over, and really never will be; things could change, and quickly. We hope we are on our way to remission, but even if we get there, this thing could come back, because we have no CURE.
And in the meantime, there are other families... heartbreaking in their familiarity. And since many kids actually struggle much more than we have, suffering many more complications and setbacks... they are also heartbreaking in their differences.
So I won't stop running, and fundraising, and doing whatever I can to support Cure JM; their work truly reduces the suffering of families like mine. And unfortunately, there is no shortage of families that need the help.
Everyone was thrilled with how well Mielle looks, and I got a little emotional, thinking of where we were a year ago, 18 months ago, two years ago... ugh. For a while there, it was looking uncertain as to whether we would ever get to the other side of this thing. And of course, we're not on the other side - yet. But things are looking better and better for our chances of getting there.
I vividly remember our first appointment in Chicago, when Mielle was a giant steroid puffball, her skin was a mess, and she was completely miserable in every way. She looked terrible, and she felt terrible, both physically and emotionally. Appointment day is a long day, especially the first-ever, and it was all I could do to help her get through the day with minimal outbursts of rage and/or crying and/or screaming. We were prepared - we had tons of activities (including a special backpack loaded with fun stuff that our friends from Mielle's pre-school had given us) and snacks, etc. but it was still incredibly difficult. Mielle did NOT want to be there, and she made it clear. She barely spoke (unless grunting and growling counts) and she'd play with one thing for a short while, then fling it away and thrash around on the examining couch, ripping up the overlying paper to shreds. The room was a complete shambles by the time Dr. Pachman actually made her appearance, and Mielle looked like a wild animal. It was horrible. I was barely holding it together myself, between trying to manage Mielle and my own emotions, while still absorbing all the information presented, asking the right questions, etc. I remember this sensation, this feeling of "how did we ever, ever get HERE?"
JDM is the only disease treated at that clinic, so when you see another family there, you know they have the same thing. I remember another mom and daughter there that day. The girl looked a little older than Mielle, and there were no outward signs of the disease, or side effects from meds. She wasn't unhappy; she was calm and pleasant, having a conversation with her mother. They simply seemed normal. While for us, things felt about as far from normal as you can get.
I could feel the other mom looking, trying to catch my eye and start a conversation, share experiences and perhaps offer support, but I just couldn't return the gesture. I felt on the verge of breaking down at any moment, and had to focus all my energies on simply holding it together. Somehow, that openness from another mom, that act of kindness, was too much to bear. I just... couldn't.
All of this was running though my mind during this last appointment. This time, Mielle looked great, felt great and (while she is still on a truckload of intense medication) things mostly seem normal again. It was all smiles from the various people passing through - the nurses, the physical and occupational therapists, the volunteer parent liason Jacqui, etc. Mielle was a little impatient about being there, but she answered questions, cooperated with the exams, and was mostly concerned with running to the window to look at the falling snow (exciting for a California girl!) and speculate whether it would cause Amy's flight to be delayed. When one of the nurses mentioned almost in passing, as she left the room, that Mielle looked great and "we need to get her off some more of these meds", I cried.
The door stayed open when she left, and across the hall, in another exam room, I could see a boy around Mielle's age, with his mom. He was very cushingoid, puffy and cross, flaming red cheeks, not talking, and the mom was laying on the exam table with him, just trying to comfort him. It broke my heart.
As we were leaving, we passed yet another family in the hall. Another sad-eyed child, exploding from steroids. Another prent, this time the dad, looking haunted and grim. We got on the elevator together, and I looked hopefully at the dad, trying to catch his eye, give him an encouraging smile, maybe share experiences. But he couldn't look at me. And I utterly, completely understood why.
So, the fight goes on. Mielle is doing wonderfully, for which (obviously) I'm extremely grateful. But our journey is not over, and really never will be; things could change, and quickly. We hope we are on our way to remission, but even if we get there, this thing could come back, because we have no CURE.
And in the meantime, there are other families... heartbreaking in their familiarity. And since many kids actually struggle much more than we have, suffering many more complications and setbacks... they are also heartbreaking in their differences.
So I won't stop running, and fundraising, and doing whatever I can to support Cure JM; their work truly reduces the suffering of families like mine. And unfortunately, there is no shortage of families that need the help.
Monday, September 14, 2009
Taper continues...
Mielle's latest labs looked good, and we decided to concentrate on getting rid of the prednisone first, so we are resuming our taper...
Fingers and toes crossed. If all goes well, she should be totally off the prednisone by Christmas time. That would be a lovely present, indeed. And it all keeps going well after that, we'll be able to stop the weekly injections of methotrexate and switch to an oral dose. But that feels like I'm getting a bit too far ahead. One day at a time.
Fingers and toes crossed. If all goes well, she should be totally off the prednisone by Christmas time. That would be a lovely present, indeed. And it all keeps going well after that, we'll be able to stop the weekly injections of methotrexate and switch to an oral dose. But that feels like I'm getting a bit too far ahead. One day at a time.
Thursday, August 27, 2009
Another Chicago trip, already
Lenny and Mielle went to Chicago again last week, and while we are still waiting for the results of the bloodwork, things went really well. Her doctor was pleased so we will resume the slow, slow tapering of her meds once we see that there are no surprises on the labs.
Mielle looks great and acts great these days. She has strength and energy to keep up with her friends, and her appearance has gone back to almost-normal (she is still round in the face and has a little poochy tummy, which I attribute to the steroid that she's still on. It's a MUCH smaller dose, but still, it's something). Actually, our next decision is which drug to concentrate on tapering next: the prednisone, or the methotrexate.
Pros to tapering the prednisone: reduce the steroid side effects, such as the puffy face and belly, mood swings (they are SO much better but we still see the effects now and then), resume growth. (Steroids stunt the growth; Mielle did not grow one bit taller for nearly 1.5 years. In the last few months, the dose has been low enough that she has edged up a little. It's wonderful to see her growing again, and if we reduce the prednisone even more, we presume this would speed up.)
Pros to tapering the methotrexate: we would soon be able to switch from a weekly injection (not fun, even after doing it for so long) to oral. She currently takes a number of additional meds, whose sole purpose is to thwart the side effects (debilitating headache and nausea) so as the mtx dose lowers, we would be able to reduce those as well, and have her on less medications overall.
Obviously, the goal is to eventually taper/eliminate BOTH prednisone and mtx, but we need to determine which takes priority right now. Dr. Pachman asked Mielle what bothers her most about having this disease and not being "normal", and she said she doesn't like being so short. So although we haven't totally decided, I think we're leaning toward trying to completely eliminate the prednisone.
Again, this is all dependent on her labwork looking good, so... fingers crossed.
And may I add that I am beyond ecstatic that these are the types of questions we need to answer now... "Which med to taper next, since things are going so well?" as opposed to "Which horrible drug should we TRY next, because things aren't going so well?" Believe me, it feels wonderful to be on this side of the fence, and I just hope, hope with every fiber of my being, that we stay here. Forever.
Mielle looks great and acts great these days. She has strength and energy to keep up with her friends, and her appearance has gone back to almost-normal (she is still round in the face and has a little poochy tummy, which I attribute to the steroid that she's still on. It's a MUCH smaller dose, but still, it's something). Actually, our next decision is which drug to concentrate on tapering next: the prednisone, or the methotrexate.
Pros to tapering the prednisone: reduce the steroid side effects, such as the puffy face and belly, mood swings (they are SO much better but we still see the effects now and then), resume growth. (Steroids stunt the growth; Mielle did not grow one bit taller for nearly 1.5 years. In the last few months, the dose has been low enough that she has edged up a little. It's wonderful to see her growing again, and if we reduce the prednisone even more, we presume this would speed up.)
Pros to tapering the methotrexate: we would soon be able to switch from a weekly injection (not fun, even after doing it for so long) to oral. She currently takes a number of additional meds, whose sole purpose is to thwart the side effects (debilitating headache and nausea) so as the mtx dose lowers, we would be able to reduce those as well, and have her on less medications overall.
Obviously, the goal is to eventually taper/eliminate BOTH prednisone and mtx, but we need to determine which takes priority right now. Dr. Pachman asked Mielle what bothers her most about having this disease and not being "normal", and she said she doesn't like being so short. So although we haven't totally decided, I think we're leaning toward trying to completely eliminate the prednisone.
Again, this is all dependent on her labwork looking good, so... fingers crossed.
And may I add that I am beyond ecstatic that these are the types of questions we need to answer now... "Which med to taper next, since things are going so well?" as opposed to "Which horrible drug should we TRY next, because things aren't going so well?" Believe me, it feels wonderful to be on this side of the fence, and I just hope, hope with every fiber of my being, that we stay here. Forever.
Wednesday, April 22, 2009
Mostly Good
Phew! Doctor visit over, blood draw OVER!
I'm exhausted but happy and relieved that there were no earth-shattering revelations at Mielle's appointment today. Her specialist here was pleased that her strength has improved in most areas, her skin looks good, and her spirits are better. (During our first visit to see this doctor in August, Mielle would do little more than grunt or growl in response to a question from a medical professional. She literally thrashed around on the table, ripping the paper on top to shreds, making messes with all the games etc. we brought to entertain her. She was basically a wild animal, and the room was a disaster area by the time we finished - thank you, prednisone! So in the area of "good spirits", there was nowhere to go but up...)
One little dark spot is that the doctor thought she could see small cataracts in Mielle's eyes. This is a side effect of the prednisone. She was checked back in September and was all clear. We need to have her seen by an opthamologist again to confirm or deny our specialist's suspicions. She did say that the cataracts "should" reverse once she's off the prednisone, but it was a pretty depressing moment in an otherwise encouraging visit.
Actually, something really wonderful happened today. Mielle still has a terrible time with blood draws. It usually ends with her screaming her head off while her arm is held down and it is ridiculously traumatic for everyone. We have tried a lot of things, and none of them have helped - until this visit.
A "Child Life Specialist" is someone who comes and explains procedures in a way kids can understand, maybe models the procedure on a doll, suggests coping mechanisms, etc. etc. We've often had one but, honestly, they've never been able to get through to my girl and really make a difference. She'd go through everything with them and gladly accept the stuffed animal and other little trinkets offered, but when the time came for the actual draw, we were back to square one; and a that point, (once the screaming begins) ain't nobody gonna make things better. So I think I can be forgiven for my skepticism when we were told that a Child Life Specialist was on hand.
Her name was Kathleen and she sat down to talk to Mielle about the draw. She asked about what had happened with blood draws in the past, and what might make it better. She and Mielle actually made a list of things to do that might help:
Then we headed to the "draw" room. There was a room set up just down the hall, with a phlebotomist waiting for us. (This meant that we didn't have to go to the regular lab down in the basement, register, wait, and have all that extra time to get even more nervous.) I was still skeptical that this time would be any better, but despite some initial resistance, Mielle handled it much better than I could have imagined - and it was definitely a smaller number of vials required than the last time I took her to Chicago (that was our very first visit and it was something like 30 vials). What a relief... I didn't realize how much anxiety I had about the blood draw until it was over!
Here are some other highlights of the day:
Mielle took this one of Gundy.
A snuggle while waiting...
Getting assessed by the physical and occupational therapists. Mielle's strength has improved, all except her core and abdominals. (We need to work on those).
Her unicorn, a gift from Uni and her Ukelele (Mielle's special rockstar friend) offered some comfort. Thanks, Uni!!!
Taking microscopic photos of the capillaries around her cuticles. I think that Chicago Children's is the only place that has one (and CURE JM helped fund it!!). It provides another clue as to the actual state of the disease in the body. (Bloodwork alone is often NOT a good indicator of disease activity, so we have to look at an array of things to try and asses what's happening.)
So, all in all, we have to be happy with where things are. It's still a long road ahead, but things are so much better than they were a year ago, six months ago, three months ago. We're grateful.
Monday, April 20, 2009
breathe and run
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....
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....
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
Monday, October 13, 2008
RUNNING
Major announcement... hold on to your hats. All who know me know that I am most decidedly NOT an athlete. But I've made a commitment to train and run a half-marathon (13.1 miles!!) to raise money for Cure JM. Here is the link to the fundraising page:
www.firstgiving.com/miellecurejm
And, Kirsten, Stephanie, Nicole and maybe Lisa are joining me! How freaking awesome is that??
I've been running the last couple of weeks just to try it out, and see if my body would shatter, or the earth would stop rotating, or anything of that nature. But it didn't. So I'm committing. And we've set an ambitious fundraising target - $10K.
I sincerely invite anyone interested to join us in training and running. The race is the Carlsbad Marathon and Half Marathon, held at the end of January - LOTS of time to get ready! And nobody could be more of a novice than me. No experience required, just some good shoes and a little determination.
We are brainstorming ways to raise publicity and awareness (and more funds) around our running, maybe creating a "Team MiMi" or something catchy like that. More to come, as we figure it out!
Of course, DONATIONS are welcome, and needed. I know many of you have already given in some way, whether to Cure JM, or with the yard sale, and we are most sincerely grateful. But unfortunately, Mielle's condition is ongoing, and so the fundraising stuff will be ongoing as well. I genuinely believe that we, as a community, can truly have a positive impact on Mielle, both by bolstering this organization, and by showing her how much she is supported, and loved.
By the way, Mielle is "training" also - for a 0ne-mile "Fun Run" that is held for kids the day before the big race. She runs up and down the hallway with a timer, and makes notes of her times. It is adorable! I want her to feel that she can do anything, that this disease will not stop her from reaching her dreams, and that she can rely on the strength and love of all those around her to support her on the way.
So, if you don't want to sponsor the grown-ups, then sponsor Mielle! She'll love reading the comments and watching us get closer to our goal.
With much love....
www.firstgiving.com/miellecurejm
And, Kirsten, Stephanie, Nicole and maybe Lisa are joining me! How freaking awesome is that??
I've been running the last couple of weeks just to try it out, and see if my body would shatter, or the earth would stop rotating, or anything of that nature. But it didn't. So I'm committing. And we've set an ambitious fundraising target - $10K.
I sincerely invite anyone interested to join us in training and running. The race is the Carlsbad Marathon and Half Marathon, held at the end of January - LOTS of time to get ready! And nobody could be more of a novice than me. No experience required, just some good shoes and a little determination.
We are brainstorming ways to raise publicity and awareness (and more funds) around our running, maybe creating a "Team MiMi" or something catchy like that. More to come, as we figure it out!
Of course, DONATIONS are welcome, and needed. I know many of you have already given in some way, whether to Cure JM, or with the yard sale, and we are most sincerely grateful. But unfortunately, Mielle's condition is ongoing, and so the fundraising stuff will be ongoing as well. I genuinely believe that we, as a community, can truly have a positive impact on Mielle, both by bolstering this organization, and by showing her how much she is supported, and loved.
By the way, Mielle is "training" also - for a 0ne-mile "Fun Run" that is held for kids the day before the big race. She runs up and down the hallway with a timer, and makes notes of her times. It is adorable! I want her to feel that she can do anything, that this disease will not stop her from reaching her dreams, and that she can rely on the strength and love of all those around her to support her on the way.
So, if you don't want to sponsor the grown-ups, then sponsor Mielle! She'll love reading the comments and watching us get closer to our goal.
With much love....
Thursday, October 9, 2008
JDM Timeline
I realize that it is really confusing to try and figure out what has actually happened in the last year (and even before that) by looking at the past posts, so I had the idea to break it down with a timeline of events:
January 2007
Mielle starts having super flushed cheeks all the time.
Feb 2007
She sees a pediatric dermatologist, who say's it's probably Fifth's Disease (also called "slap-cheek" disease"), despite the fact that Fifth's usually only lasts a week or so. He said to come back if it doesn't clear up in 8 weeks.
April 2007
8 weeks later, and it had cleared up. Sort of. Mostly. At least, it wasn't the same, so we THOUGHT it had cleared up. Basically, for several months, the redness would come and go and in different spots, and it was worse after being out in the sun. We really didn't connect it to the earlier condition; we didn't realize it was an ongoing thing. We thought it was just a weird reaction to the sun. We had NO IDEA that it could be something serious (can you sense the defensiveness? It is hard to look back on these events; it's hard not to blame ourselves).
Mid-September 2007
I was sufficiently concerned about the skin stuff to take Mielle to see my own dermatologist. She gave us a topical steroid cream and instructed us to come back in three weeks if it didn't help, at which time she would do blood tests for lupus.
Early October 2007
The steroid cream did nothing, but in the meantime the muscle involvement began, and this changed everything. By about the third week of October, it was obvious that something was wrong - Mielle was exhausted, wouldn't walk far, had trouble with stairs, and eventually just refused to climb them. I took her for a same-day appt at her pediatrician, who ran the lupus blood tests. They were negative. We were referred to a pediatric rheumatologist at Children's Hospital Oakland.
October 31, 2007
Mielle's appt with the rheumatologist, and her diagnosis of juvenile dermatomyositis. We were actually surprised to get a definitive diagnosis at that appointment; we thought we would be in testing hell for a while before finding the cause. Mielle begins that night with the oral steroid, prednisone, as well as oral methotrexate. We were relieved that her doctor didn't feel her disease was severe enough to warrant intravenous steroid treatment or methotrexate by injection. She was just taking it orally.
Nov 2007 - Feb 2008
It was a pretty horrible winter, with Mielle suffering the effects of the disease and then the meds. The steroid made her unbearably, explosively moody and full of rage. Incredibly difficult to deal with. She started putting on weight and experiencing brutal headaches and nausea. By about December, though, her strength and energy was really showing improvement - the meds were working. Under dr. advice (of course), we began tapering the oral steroid and presumed the methotrexate (which takes 8 weeks or so to begin working) would do the job of controlling the disease.
March 2008
By the end of the month, it was clear that the muscle pain and weakness was back. We were spinning. We had lost confidence in her doctor at Children's, but we didn't know where to take her. UCSF? Stanford? A highly-touted specialist in Chicago, or one in Boston, or one in DC? Mass confusion, anger at the first rheumatologist, mass guilt that that we didn't get a second opinion at the outset, just a horrible time. This is also when Lucien's delays were emerging. The next few months would be some of our darkest.
April 2008
Through a sort of random series of events, we end up taking Mielle to Stanford, where she began intravenous steroid treatments (which means she was hooked up to an IV and began receiving the steroid directly into her vein) and we increased her methotrexte, and switched to weekly injections (which is more effective). She stayed on the oral steroid as well. The first intravenous steroid "session" was every day for three days; each treatment took about 4-5 hours total. After the inital set of three treatments, she received them one time every two weeks for a couple of months. I also made an appointment for her with the specialist in Chicago; at this point, my faith was shaken and I felt I wouldn't be satisfied until that doc saw her.
June 2008
The intravenous steroids had helped bring things back under control, but she seemed to have plateau-ed. Some kids are "refractory" which basically means that conventional treatments don't work and you just have to keep trying other drugs, more and more experimental things. It was looking like Mielle would be in this group. We decided the next step would be an intravenous drug called IVIG, which is somehow derived from donated blood. Lucien, for his part, had his bones x-rayed to rule out certain genetic abnormalities, and his x-rays were normal.
July 2008
Miraculously, or at least it seemed that way, she started to improve. My theory is that the methotrexate by injection was finally kicking in, after about 10 weeks.... so, hallelujah, it was working after all. We decided to hold off on the IVIG and also to wait til after the Chicago trip to make any big changes to the treatment. In other news, Lucien had an MRI of his brain, which showed some abnormalities, but did not point to a definitive diagnosis and was not definitively determined to be the cause of his delays. After slogging through all the assessments and red tape, he finally really began with services through Regional Center.
August 2008
Our first appt in Chicago, which showed encouraging results about the level of Mielle's disease activity - not as active as we feared it might be.
Present (October 2008)
Continuing on current course, methotrexate injections 1x/week, still on the oral prednisone but slowly, slowly tapering. Mielle's energy and strength seem pretty darn good. Her skin is ok; rash is still present but it's not extreme. She continues with regular appointments at Stanford and will have another appt in Chicago in early December.
We are coming up on a year since Mielle's diagnosis, and I'm surprised at how emotional I feel about it. It's been a year that turned our world upside down and inside out. There were times I felt trapped in a nightmare, and other times I felt like I was living in some kind of alternate reality.
But we are, of course, grateful that both kids seem to be on the right track now. We do our best to just take things day by day, and hope that it continues.
Thanks for all the love and support from our friends and family; we never would have made it this far without you. I sincerely hope that the worst is behind us for both kids (and that there isn't some other crisis looming), but one thing we've learned is that you just never know what is around the corner!
January 2007
Mielle starts having super flushed cheeks all the time.
Feb 2007
She sees a pediatric dermatologist, who say's it's probably Fifth's Disease (also called "slap-cheek" disease"), despite the fact that Fifth's usually only lasts a week or so. He said to come back if it doesn't clear up in 8 weeks.
April 2007
8 weeks later, and it had cleared up. Sort of. Mostly. At least, it wasn't the same, so we THOUGHT it had cleared up. Basically, for several months, the redness would come and go and in different spots, and it was worse after being out in the sun. We really didn't connect it to the earlier condition; we didn't realize it was an ongoing thing. We thought it was just a weird reaction to the sun. We had NO IDEA that it could be something serious (can you sense the defensiveness? It is hard to look back on these events; it's hard not to blame ourselves).
Mid-September 2007
I was sufficiently concerned about the skin stuff to take Mielle to see my own dermatologist. She gave us a topical steroid cream and instructed us to come back in three weeks if it didn't help, at which time she would do blood tests for lupus.
Early October 2007
The steroid cream did nothing, but in the meantime the muscle involvement began, and this changed everything. By about the third week of October, it was obvious that something was wrong - Mielle was exhausted, wouldn't walk far, had trouble with stairs, and eventually just refused to climb them. I took her for a same-day appt at her pediatrician, who ran the lupus blood tests. They were negative. We were referred to a pediatric rheumatologist at Children's Hospital Oakland.
October 31, 2007
Mielle's appt with the rheumatologist, and her diagnosis of juvenile dermatomyositis. We were actually surprised to get a definitive diagnosis at that appointment; we thought we would be in testing hell for a while before finding the cause. Mielle begins that night with the oral steroid, prednisone, as well as oral methotrexate. We were relieved that her doctor didn't feel her disease was severe enough to warrant intravenous steroid treatment or methotrexate by injection. She was just taking it orally.
Nov 2007 - Feb 2008
It was a pretty horrible winter, with Mielle suffering the effects of the disease and then the meds. The steroid made her unbearably, explosively moody and full of rage. Incredibly difficult to deal with. She started putting on weight and experiencing brutal headaches and nausea. By about December, though, her strength and energy was really showing improvement - the meds were working. Under dr. advice (of course), we began tapering the oral steroid and presumed the methotrexate (which takes 8 weeks or so to begin working) would do the job of controlling the disease.
March 2008
By the end of the month, it was clear that the muscle pain and weakness was back. We were spinning. We had lost confidence in her doctor at Children's, but we didn't know where to take her. UCSF? Stanford? A highly-touted specialist in Chicago, or one in Boston, or one in DC? Mass confusion, anger at the first rheumatologist, mass guilt that that we didn't get a second opinion at the outset, just a horrible time. This is also when Lucien's delays were emerging. The next few months would be some of our darkest.
April 2008
Through a sort of random series of events, we end up taking Mielle to Stanford, where she began intravenous steroid treatments (which means she was hooked up to an IV and began receiving the steroid directly into her vein) and we increased her methotrexte, and switched to weekly injections (which is more effective). She stayed on the oral steroid as well. The first intravenous steroid "session" was every day for three days; each treatment took about 4-5 hours total. After the inital set of three treatments, she received them one time every two weeks for a couple of months. I also made an appointment for her with the specialist in Chicago; at this point, my faith was shaken and I felt I wouldn't be satisfied until that doc saw her.
June 2008
The intravenous steroids had helped bring things back under control, but she seemed to have plateau-ed. Some kids are "refractory" which basically means that conventional treatments don't work and you just have to keep trying other drugs, more and more experimental things. It was looking like Mielle would be in this group. We decided the next step would be an intravenous drug called IVIG, which is somehow derived from donated blood. Lucien, for his part, had his bones x-rayed to rule out certain genetic abnormalities, and his x-rays were normal.
July 2008
Miraculously, or at least it seemed that way, she started to improve. My theory is that the methotrexate by injection was finally kicking in, after about 10 weeks.... so, hallelujah, it was working after all. We decided to hold off on the IVIG and also to wait til after the Chicago trip to make any big changes to the treatment. In other news, Lucien had an MRI of his brain, which showed some abnormalities, but did not point to a definitive diagnosis and was not definitively determined to be the cause of his delays. After slogging through all the assessments and red tape, he finally really began with services through Regional Center.
August 2008
Our first appt in Chicago, which showed encouraging results about the level of Mielle's disease activity - not as active as we feared it might be.
Present (October 2008)
Continuing on current course, methotrexate injections 1x/week, still on the oral prednisone but slowly, slowly tapering. Mielle's energy and strength seem pretty darn good. Her skin is ok; rash is still present but it's not extreme. She continues with regular appointments at Stanford and will have another appt in Chicago in early December.
We are coming up on a year since Mielle's diagnosis, and I'm surprised at how emotional I feel about it. It's been a year that turned our world upside down and inside out. There were times I felt trapped in a nightmare, and other times I felt like I was living in some kind of alternate reality.
But we are, of course, grateful that both kids seem to be on the right track now. We do our best to just take things day by day, and hope that it continues.
Thanks for all the love and support from our friends and family; we never would have made it this far without you. I sincerely hope that the worst is behind us for both kids (and that there isn't some other crisis looming), but one thing we've learned is that you just never know what is around the corner!
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