The Full Results

Okay!! I will give a blow-by-blow of our trip to Chicago, (including butterfly garden pictures!) but right now I want to post another update on the medical side of things. We had our follow-up phone call with Dr. Pachman and got the full results of all the bloodwork and other tests, and (joy of joys) much of the news was actually good!

Tests for lupus overlap and celiac disease were negative, and most of her bloodwork looked really good. I mentioned the nailfold capillaries test earlier, and they were deemed "quite mild" (!!!!!) The bone density scan showed some thinning due to the inflammation caused by disease activity, but not enough to warrant treatment with additional meds. There were other things mentioned that I can't quite remember now (we'll get a copy of the report, though) but anyway, it was mostly all encouraging. Dr. Pachman went so far as to give us cause to hope for remission, without any permanent damage (muscle or otherwise). I almost want to cry as I write this.

Overall, much better news than we had dared to hope for. We discussed possibilities for the next steps in Mielle's treatment, and are making some more minor changes to the drug regime. We are once again beginning to lower the oral prednisone, but very slowly and cautiously. You may recall that lowering this med is what caused her relapse in the spring, but her other meds are at much higher dosages than than before so we're hopeful that we can successfully taper the prednisone this time.

Initially, we were told to come back in two months, but it's been revised to four. Yay! I believe the two offices (Chicago and Stanford) will be able to work together on an ongoing basis, but there are some tests that can only be done in Chicago, and we will go when necessary.

We are not out of the woods yet, and we will be dealing with this on a pretty intense level for some time to come. But I finally feel that I have real, tangible evidence of what is actually happening with the disease activity, and with the treatment. I wouldn't say that I have complete peace of mind - I doubt I ever will - but this is the closest I've come to it since Mielle was diagnosed. And that was definitely worth the trip!

"How was your trip?"

This is the quickest of quick updates. We got back from Chicago on Wednesday we hit the ground running, with appointments on Thurs and Fri and a big wedding for me today (Saturday). BUT, and I know everyone is anxious to hear how things went, so...

Briefly: Overall, I think it went well. Based on a test they do in the office, they felt that Mielle's disease activity moderate, not severe. They feel this indicates that her current treatment regime is helping. However, they also feel (as does her Stanford doctor) that reducing her prednisone dose is a high priority. She has been on the high-dose oral steroid for too, too long. So we added another new drug, another immunosuppressant called Cellcept, more commonly used for transplant patients to prevent rejection of the new organ. The hope is that this drug, along with the methotrexate she already receives, will give the necessary boost and make it possible to reduce the prednisone without causing another relapse.

Mielle left a lot of blood behind in Chicago, and we will get the full results on all that stuff in about a week. So the conversation we had with Dr. P in Chicago was preliminary. Once she has all the data from the visit available, we'll be discussing things in further detail.

We're not sure how often we will be going to Chicago, but at this point they want to see Mielle again in two months.

I will post a more complete story of our trip as soon as I'm able!

Getting Ready for the Windy City

Everyone's wondering about the details of Chicago... we leave this Sunday, Aug 10. Her appointment is on Monday, and then we have Tuesday to play and have fun. We'll return on Wednesday.

Lenny and I are just juggling, juggling, juggling right now - we are both smack in the middle of jobs, and the appointments never stop, and there are some things I need to do to prepare for the trip... I'll be glad when things slow down a bit.

Mielle had a very encouraging appointment with her rheumatologist at Stanford last week- she's really doing better lately, gaining strength and energy. Her skin is looking better, although she still has her "red days", which completely freak me out. It's great to see her gaining strength, but we know that she is not 100% yet, and the skin inflammation needs to be controlled as well, so she still needs intensive treatment and it will be interesting to see what our Chicago expert recommends for her next steps.

Thanks for all the warm and caring thoughts for our trip. Will update the blog with news as soon as I can.

xoxoxo

Thank You letter

Here is our "letter to the editor", sent to both local papers. As I was putting the finishing touches on this letter last week, trying to find the right words to express our feelings to the community response to Mielle's situation (staggered? overwhelmed? awed?), I heard the sound of our mailbox flap swinging shut. A woman who is a friend and former teacher to Mielle, had just dropped off a very generous donation toward the expenses of Mielle's Chicago trip.

What can I even say about that??

The letter to the editor:

We have to publicly thank everyone involved in making our fundraising yard sale on Bay Street on Saturday such a huge success. Since our daughter, Mielle Gonzalez, was diagnosed with a rare and terrible autoimmune disease called juvenile dermatomyositis (JDM) in the fall, it has been a very challenging time for our family, to say the least.

What began as an offer from friends to organize a multi-family yard sale on our behalf grew, blossomed and took on a life of its own. Word spread rapidly, and items began flowing in on a daily basis from friends and strangers alike, simply people who were moved by our situation and wanted to help. We were overwhelmed and humbled by this incredible response from the community. Still, nothing prepared us for what happened next!

By 9 am the day of the sale, the crowd was so big, there was barely room to walk. The lemonade could not flow fast enough, and our musician friends entertained the crowd. Hundreds of people came, shopped, learned, donated, and supported us. In the midst of the chaos, we somehow connected with others whose lives have been touched by JDM, and those facing the challenges of other autoimmune diseases. It is impossible to describe our feelings as we watched this event explode and transform into something so far beyond the original expectations. We were - and still are - uplifted and moved beyond words.

So, thank you, thank you to everyone involved. Thank you to those who gave items, and those who shopped and made donations, and to all the friends that put in long hours before, during, and after the sale. Thank you to everyone who made signs and fliers, to those who baked cookies and those who made lemonade. Thank you to the musicians, and to our neighbors for letting us take over their yards. Thanks to those who watched the kids during the sale, and thanks to the kids for hanging in there for a long day.

Thank you to everyone in our Alameda community. We are truly staggered by the astounding kindness and generosity we have experienced.

Most of all, thank you to Mielle, whose courage, wisdom and spirit inspires us every day.

For more information about JDM, or to make a donation in Mielle's name to support JDM research, please visit www.curejm.org.

Newspaper coverage

I have to take a step back and tell you about the newspaper story that ran on Friday, July 25 (the day before the big sale). We were interviewed, along with the family of Kendyl, the other girl in Mielle's school that has JDM (in remission). We were expecting a little paragraph of a story, so we were very surprised and happy to see quite an in-depth article - and they mentioned contact information for Cure JM, which is fantastic. When we were planning the yard sale, I wasn't expecting the actual sale to be that big (how wrong I was!) but I thought it would be a great vehicle to get media coverage and raise awareness about JDM - and it worked! Here is a link:

http://www.contracostatimes.com/alamedajournal/ci_9987674?nclick_check=1

I'm not sure how long the story will stay on the paper's website, so I'm going to copy and paste the text at the end of this post.

Anyhow, we followed up with both papers and got post-event coverage as well, also mentioning the Cure JM website.


I'm getting a lot of satisfaction out of this. Here's the text of the first, longer story from the Alameda Journal:

Like many mothers, Suzy Clement is proud of her daughter, Mielle Gonzalez. Mielle is bright, aware and articulate. But unlike other mothers, Clement is grateful when Mielle has the strength to briefly ride her bike or walk up stairs on her own. She never knows if her daughter, who suffers from Juvenile Myositis, will be able to do these things in the future.

Juvenile Myositis (JM) is a rare autoimmune disease whose main symptoms are muscle weakness and skin rashes. JM occurs when the immune system mobilizes against a "trigger" (which could be a virus, vaccine or environmental hazard) but is then unable to stop the infection-fighting process, creating damage to the body.

Other symptoms include inflammation in the digestive system; fever; calcinosis, which are small lumps of calcium that form under the skin or in the muscle; and vasculitic ulcers, which are holes in the tissue that surrounds an inflamed blood vessel.

JM affects only about 5,000 children in the United States. Yet there are two known cases in Alameda.

Michelle San Nicolas clearly remembers the first time she noticed symptoms in her daughter, Kendyl. At almost 4 years old, Kendyl woke up one morning with rosy cheeks, resembling a rash. San Nicolas thought it might be a reaction to a new laundry detergent. But switching back didn't help Kendyl.

When she took her son to see a dermatologist for eczema, she asked the doctor also to look at Kendyl. The doctor speculated it might be a reaction to too much sun exposure. He put her on

cortisone and advised staying out of the sun. Although San Nicolas followed this advice, there was no improvement. Kendyl's cheeks turned a bright red, and she developed foot pain. She also became more tired, and all her cuticles became painful and seemed to be infected.

San Nicolas learned later that the cuticles weren't infected. Instead, the disease was causing the blood vessels to atrophy. When Kendyl's cuticles grew, they turned brown from lack of blood flow.

After another false diagnosis, San Nicolas was referred to a San Francisco specialist who confirmed JM through a blood test. It is not uncommon for doctors to misdiagnose JM sufferers since the disease is so rare that most doctors won't encounter it during their careers.

Although Kendyl had a difficult time taking her pills and dealing with medication side effects, she responded well to treatment. Now approaching her eighth birthday and another year at Franklin Elementary, Kendyl is symptom-free. Her disease is in remission, meaning she has been off medication for at least a year. San Nicolas is still cautious, however, because relapses could happen at any time.

One-third of JM sufferers will go into permanent remission, one-third will enter remission and suffer relapses and one-third will always be on medication. JM affects each patient differently. Some have mild symptoms while others might die as a result of the disease.

"I will always worry about it," says San Nicolas. "As a person who never got sick, I thought it was just a rash. But it was something terrible. Now I question everything. If she gets sick, I wonder if it will trigger (the disease). What happens when she grows up and gets pregnant; will it trigger something?"

San Nicolas was able to provide much-needed support when Suzy Clement's daughter was diagnosed with JM. Mielle, also a Franklin student, started having red blotches on her cheeks in early 2007. By fall of that year, the six-and-a-half-year-old had developed muscle weakness and soon couldn't walk far without getting tired. To walk up stairs, she had to pull on the railing or push on her legs. Her parents, Clement and Lenny Gonzalez, thought her kindergarten schedule might be wearing her out. But soon, Mielle couldn't go up stairs at all. She wasn't able to get up off the floor without crawling to a piece of furniture and using it to push herself up. Initially suspecting lupus, her doctor referred her to a pediatric rheumatologist. The diagnosis was JM.

Mielle initially responded well to treatment. But the drugs commonly used to treat JM are strong with powerful side effects. Mielle began a high dose of the corticosteroid Prednisone, which can cause mood swings, increased appetite and weight gain, altered weight distribution, bone density loss, stunted growth, high blood pressure and cataracts. She also began Methotrexate (a chemotherapy drug when used in higher doses), which can partially take the place of corticosteroids after it has had time to build up in the body.

Mielle has experienced various plateaus during the course of her treatments. She switched doctors and now goes to Stanford every week for intravenous injections of Methotrexate. She is also on Prednisone and Cyclosporine, an immuno-suppressant drug typically used in organ transplant recipients to prevent rejection of a new organ.

Although her strength has improved and she is occasionally able to ride her bike for brief periods, she still has a facial rash and signs of active disease, such as inflammation. Her weekly treatments often leave her so exhausted that she needs to sleep most of the weekend. She also deals with mood swings and anger, a side effect of the Prednisone.

"Mielle recently told me, 'My brain feels like it wants to jump out of my head and beat someone up,'" said Clement.

One problem of dealing with an uncommon disease is that treatment methods vary, and effectiveness is not guaranteed.

"There's no standard protocol of treatment," said Clement. "Every case and every kid is different. Kids don't respond to treatments the same way. So your kid starts to feel like an experiment. Your 6-year-old is taking a combination of toxic, lethal chemicals, but that's what we have to do. It's bad enough knowing your kid has this disease and she has to undergo this treatment with horrible side effects. But we don't know if it's going to work or if what we're giving her is right."

Next month, the Gonzalez family, which includes 16-month-old brother Lucien, will travel to Chicago to seek more aggressive treatment from one of the few facilities specializing in JM. Even in a best-case scenario, Mielle will be under treatment for at least two to three more years. Her medical bills are costly for self-employed photographers Clement and Gonzalez, who pay completely out-of-pocket for their medical insurance.

This Saturday, the Gonzalez family and friends will host a multi-family yard sale that includes a wide variety of items donated by community members. Proceeds will help pay for the Gonzalez family's medical bills and a portion will go toward JM research.

Items for sale include toys and other items for babies and children, furniture, clothes and bikes, and more. Friends of the family, who are musicians, will be playing for tips, and Mielle will be hosting a lemonade stand.

It's a Wonderful Life

Well, our heads are still reeling from Saturday's yard sale. I haven't even been able to sit down and write about it because I'm still processing everything that happened!

I mentioned last week that we had lots of donations of items coming in. Well, toward the end of the week it all kind of exploded and we just had a steady stream of people, friends and strangers alike, dropping off all kinds of STUFF. Clothes, toys, books, tennis rackets, records, baby gear (lots of baby gear!), furniture, a small refrigerator, "vintage" computers... the list goes on and on. Our backyard was FULL (and we have a pretty big backyard!) It was all great for a while, and then I must admit to a moment on Friday afternoon when I was thinking, "holy crap, what are we going to do with all this??" Still, it kept on coming. Our friends Jessi, Dianne and Doug arrived late Friday afternoon to help sort and organize, and I give them a lot of credit (and my eternal gratitude) for the fact that they did NOT take one look and flee! Honestly, it was that overwhelming. Nobody really admitted it to anyone else at the time, but we did learn later that everyone had a similar freak-out moment...

Anyhow, we dug in and spent Friday evening, til it got dark, organizing into piles and strategizing how to set things up on Saturday for maximum sales potential. I didn't sleep much Friday night and I got up early to take these pictures, entitled "Dawn on the day of the Sale".


Jessi, bless her heart, showed up at 6:45 am and Lisa arrived shortly after. We started moving stuff out, and by 8 or so we had a good crew of friends and samaritans helping. That's also about the time the early bird shoppers began showing up in earnest.

From that point on, all the carefully-laid plans for managing things sort of went out the door, because we were simultaneously setting up and selling in full swing. So it turned out to be a very fly-by-the-seat-of-your-pants kind of thing. By 9 am it was really crowded, and by 9:30 you could barely walk around the front yards. For about 3 straight hours, it was jam packed; traffic was backed up turning onto our street, and people were double parked on both sides. It was a total madhouse!






Our musician friends arrived and started playing, and we got the lemonade stand going. (Special thanks to Doug for taking charge and making it happen!) Dianne's dad stood in our kitchen for about two hours straight, making batch after batch of lemonade, and Doug would come in with a big empty pitcher, fill it up, and run back out, saying "We can't keep it coming fast enough!" every time.



I went out to take pictures, and walked across the street to get a shot of the whole scene, and I had this moment of seeing what was happening, and feeling total awe and amazement at the sight before me. What began as a plan to pull a few families together for a group sale had grown - exploded, actually - into something far, far bigger than any of us could have imagined, or hoped for. It truly took on a life of its own, and to stand there, looking at all of this, and thinking that this was for Mielle, and for us... it was very overwhelming.


Our lovely neighbor Phyllis, who let us spread out into her yard for the sale, told me on the phone the next day, "I just looked at it and thought, Well, this is a Miracle! I've never seen anything like it!" (And Phyllis is 90 years old, so she has seen a lot! ; )

Something I wasn't expecting was to actually connect with others who are touched in some way by JDM, or other autoimmune diseases. We'd had a great write-up about Mielle, Kendyl and JDM in the local paper the day before the sale, so there were several people who sought us out over the course of the day to tell us their own stories or offer words of experience and advice. Others just wanted to connect in person or to pass on a donation. The compassion we experienced from these folks was really moving, and I cried about 5 different times over the course of the day. Honestly, it was one of those things that really renews your faith in the essential goodness of people.

So, fast forward to the end of the day... believe it or not, MOST of the stuff had sold and the amount left over was fairly manageable. We made a game plan for dispensing with it, our wonderful friends (who had arrived early in the morning and braved the chaos in the hot sun all day) helped pack everything up, and we collapsed.


Later on, we tallied up the money and found that over $4500 had been raised.

That is AMAZING!!

We never, ever in a million years expected that!

So, now we can head to Chicago with a little less worry. Our plane tickets are paid for and we can put a serious dent in whatever bills we accrue there. And we'll be making a fat donation to Cure JM as well.

I've said it before, and I'll say it again (and again, and again)... thank you, thank you, thank you.