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.
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