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.

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

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....

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!

The Deal with Lucien

Okay, I alluded to what a difficult summer it's been, and it's not only because of what was happening with Mielle. Around the same time (March-ish) when we realized things weren't right with Mielle, we realized that things weren't right with Lucien, either. He has significant developmental delays that were becoming clear around that time.

First of all, sorry to those who haven't heard about this yet. It hasn't been our intent at all to be hush-hush about it; we've been talking about it when we see people, and when it comes up, but haven't sent out a big news update about it because it was just too overwhelming to tackle it, with everything else.

So, he was 12 months old, not crawling, not even close to walking, not pulling up, just totally immobile. He had, of course, been having all his well-baby check-ups and starting around 9 months I began to feel a little concerned about his milestones. The pediatrician felt a "wait-and-see" approach was appropriate, and I was happy to go along with that because we really had our hands full with Mielle's situation, and it was just devastating to contemplate the idea that there might be something wrong with Lucien, too! But, eventually it became obvious that things were amiss, and so the odyssey began to get him seen by a specialist and generally figure out what we should be doing. Unfortunately, our pediatrician failed to mention that it takes MONTHS to get an appointment with a pediatric neurologist, or a developmental pediatrician. NIGHTMARE!! I was calling everywhere trying to get an appointment, because now that we'd decided he needed to be seen, I wanted it to happen as soon as possible. I had no idea how the system works.

Anyhow, long story short, I managed to get him an appointment with a neurologist at UCSF for, I think, end of May. In the meantime, I heard about an agency called Regional Center of the East Bay, that provides early intervention for kids under 3 with delays, so I started that process as well. It's a government bureaucracy, so there is a fair amount of calling, waiting, following up, waiting, making an appt, waiting, having another type of eval, waiting, waiting for reports to be filed, waiting, etc etc. So that was a little difficult, but he was assessed before too long and found to qualify for services (which means he was delayed enough to warrant receiving services).

It was his gross motor skills that originally had us worried (crawling, walking, etc) but he was significantly delayed in areas of speech and social interaction as well. It's a difficult thing to hear about your child.

His physical therapy eval revealed that he has low muscle tone - which basically means that the tension of his muscles is too loose, so he's kind of floppy and it is especially arduous for him to do normal things like sit up, pull up, etc. Basically, anything which requires him to use his muscles feels like running a marathon to him. The effects of the low muscle tone can be mitigated by increasing the muscle strength, but the low tone never really goes away. Other than this (knowing that he has low muscle tone), he does not have a diagnosis to explain the delays.

He has had a number of blood tests as well as an MRI of his brain (that was in July) that were all inconclusive. We are fighting with the insurance company to get them to pay for genetic testing to see if some kind of abnormality or syndrome can be identified; if we don't win the fight, we'll decide whether to just pay for the test ourselves. (I don't even know how much it is).

In the meantime, and here is the GREAT news, he has been making fabulous progress with the many types of services he has received through Regional Center (physical therapy, something called "Parent-Infant Program" which is like a pre-school for kids with delays, and he just started speech therapy). He is now crawling from room to room army-style (on his belly), crawling up and down stairs, pulling up to standing and cruising along the furniture. He has little ankle braces to give him support while standing, etc. (low muscle tone goes hand-in-hand with hyper-flexible, too-loose joints, so the braces help his ankles stay aligned). They're small and cute and not that noticeable, not Forrest Gump-style full-leg models or anything like that!

His speech, communication and understanding have been exploding lately. He's saying new words, imitating our speech, pointing at things like "the cat" and stuff like that.

He is still delayed, no doubt about it, but the fact that he has been able to make so much progress in such a short time is very, very encouraging. I'm hopeful that with more time and more special services, he'll eventually catch up and be a "typical" kid. My theory is that the low muscle tone is the root of the problem; it was so arduous for him to DO stuff that he just gave up before he really even began, and just became super passive (and he does have a very mellow temperament, which I'm sure contributed as well). Now that he is overcoming that physical barrier, getting stronger and more able to move around and have command over his body, it's like the world is opening up for him. He is curious and pesky, just like any other kid his age, and oh how we welcome that!

More than anything, he still lives up to his nickname, "Mr. Delightful". I have never met anyone who is just so darn happy to be here. Through all of this, he continues to light up our lives, Mielle's included, in the most special way.

Catching up

Well, I regret that I haven't posted in a while. The last several months, beginning around March - when we realized Mielle was relapsing - have been a very dark and difficult time. The summer was hard, very very hard. Once we got through the Chicago trip, I needed some time to recuperate, catch up on my work, and just try to feel better. And guess what? I'm feeling better!

I talked about the test results, etc from Chicago, but not about the trip itself. Bless Stephanie Cebulski for coming with us; I don't know what we would've done without her. We arrived after an uneventful flight and checked into the glamorous Days Inn. It was fine, but the next day we were able to move to the Ronald McDonald House, which was awesome. They have so many resources available to support families - well-stocked kitchen, play rooms, little baskets of freebie toys everywhere, free passes to some of the Chicago attractions, free shuttle to/from the hospital. It was amazing for us, who were there just a few days; it would be truly invaluable for a family that has to stay for extended periods of time.

Anyhow, the appointment was a long day, as we knew it would be. The highlight was meeting the famous (well, famous among JDM families!) Dr. Pachman, who was very warm and down-to-earth. The lowlight was the most horrific blood draw experience we've ever had. Without going into too much detail, it involved 17 vials to be filled, a technician who allowed the needle to SLIP OUT halfway through, which resulted in a total of 4 pokes, and 45 minutes of Mielle's non-stop screaming. Horrible.

So picture this - we get through all that, and then the next day is our fun day, our butterfly day. And I get a call from the dr. office saying that a mistake was made; they didn't order all the tests that they need. We need to go in FOR ANOTHER BLOOD DRAW. I cried at the thought.

I decided to have our fun day, and do the blood draw the following morning before heading to the airport. I just couldn't take Mielle back there yet. So, we headed to the butterfly garden and it was fabulous! Really wonderful. Mielle had a great time taking pictures and spotting her favorites, the blue morphos. She looks like she's having fun, doesn't she?? ; )



We were there at 2 pm when the release the new adults into the garden, and it was really cool! They gave a little talk and then released a bunch of butterflies.

They are attracted to bright colors, and one landed right on top of Mielle's purple hat.

I was wearing an orange skirt, and one landed on my skirt and then started walking up toward my head. Just kept on coming until the docent came and removed it. It was cool to see a butterfly face so close up, but I admit that once it started getting close to my own face, it was freaking me out a little!



We stopped for a huge and heavy pasta lunch on the way back to Ronald McDonald House (mmm, Chicago cuisine!) and on the way we stopped in this funny little store called "Pocket Puppies", or something like that. It's a fancy schmancy dog-accessory store, but they actually sell puppies as well. We got to hang out with the pups a little bit; Mielle bonded in a big way with a teeny little chihuahua puppy, 9 weeks old. It was so tiny and sweet; she was in heaven, especially over it's naked little belly.

So we had a good time. That evening, Nancy and Kristin came to visit us from Milwaukee. We all hung out a little at Ronald McDonald House, then Mielle stayed with Steph for bedtime and I headed out with the ladies for a tea and catching up. It was sooooo wonderful to see those gals. Ladies, thank you so much for making that drive, to have a few hours with you.

Meanwhile, Mielle and Steph did mud masks before bed:

The next day, we had the very unpleasant task of going back for another blood draw. It was awful, let's just leave it at that. And it took a really long time, so we were a little rushed getting to the airport after that, but it all worked out. A highlight for Mielle was her trip to the "toy room" at Ronald McDonald House - a room stacked floor to ceiling with nothing but toys, and each kid gets to pick one out during a stay there. We went right before leaving for the airport; it's probably a good thing, so that Mielle had a deadline for choosing, or else we probably would have been there all day trying to decide!

Even with all the medical drama, I think Mielle had fun and she asks me when we can go to Chicago and stay longer. She will be going in December - Lenny is going to take her this time - and we'll see if she likes it as much in the winter!

Mielle's new toy!

Hello! Guest blogger and dad Lenny here... Some of you friends banded together and bought Mielle a Wii! Its great for movement and exercise. Thanks Mark, Kate, MJ, Chris, Lynn, Les, and Tanda!

Have a look at this video of Mielle giving me the beat down in a game of Wii bowling!

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.

Chicago Bound

It's official - we're heading to Chicago for an appointment with one of the foremost experts in JDM. I'm excited and relieved and nervous, but mostly relieved. I've done nothing but worry and second-guess the decisions around Mielle's treatment ever since we dropped our first rheumatologist (well, actually even before that - from the very beginning, truth be told); some peace of mind is desperately needed. I don't know if I will get it, but I feel like this is my best chance at it. I don't know if this will be a one-time evaluation or if we end up going regularly.

It will be a long day for the appointment, and I'm worried about how Mielle will take the whole experience. But I just found out that there is a nature center in Chicago with an amazing butterfly garden... Mielle is SUPER into butterflies and moths right now, so I hope that will help take the sting out for her.

We're flying to Chicago Aug 10, have the appointment on the 11th, and we will stay the 12th to have fun (butterfly garden!) so the trip won't be a total bust for Mielle. Our fantastic and amazing friend Stephanie has agreed to come along to help keep things light and help with logistics. Mielle adores her and I'm so, so grateful for her generosity. Blown away, in fact!

We're also hoping we may be able to connect with the lovely Kristin Connor, who currently resides in Milwaukee. Nancy Poozy is there, too, so maybe we'll see her, also. We hope!

Yard Sale-O-Rama

We're getting a lot of good stuff coming in for the sale next Saturday (July 26) - thanks so much to everyone! This whole project has done so much to lift our spirits and help something positive come out of this mess. The yard sale really has taken on a life of it's own, and keeps growing. We are getting drop-offs from friends as well as people we've never met. The folks at Mielle's former preschool, Home Sweet Home, had been planning a group rummage sale as a fundraiser for the school, and decided to direct all of that stuff to us. It's really been amazing, and it really, really touches us.

Here's a video Lenny did to advertise the sale:

http://www.youtube.com/watch?v=AVWSwbZe_1g

One of my visions for the yard sale was that it would provide a tangible way for the people that care about us to assist us, and reduce that terrible feeling of helplessness that we all experience in this situation. And I pictured it as a way to rally our community, bring everyone together and hopefully become a positive force for everyone involved. All of this is coming to pass, and HOW! It is way beyond my expectations!

It has also been a great way to get media coverage which will raise awareness about JDM. We are to be featured in the Alameda Journal on Friday, and we are working on other outlets as well. I also hope to have some coverage of the event itself - we'll be taking photos, of course! If nothing else, it will be covered HERE!

So, once again, Thank You to Dianne and Lisa for organizing, and Thank You to everyone who is donating stuff and helping out of Friday and Saturday. I can't really express what it all means to us.

Here's a family pic we took for the Journal:

trying to try something new

This one was sent mid-July 2008.

Hello, friends -

So, just a quick update - Mielle did the IV steroid treatments for a little more than two months, and has improved. Her skin looks better (less red), she doesn't complain of leg pain too much anymore, and her strength and energy have been improving. At the same time, she did seem to "plateau" with that treatment - it was helpful, but she reached a point where it didn't seem to be pushing her forward anymore.

We've discontinued the IV steroid for now, and started her on another oral immunosuppressant drug called cyclosporine. Some patients have had good results using this drug in combination with methotrexate, which she has been taking from the start. She hates the taste of the new medicine, but she realizes it's better than going to Stanford and getting an IV!

We are also considering another new treatment which she would actually take as part of a study. It's another drug that is delivered intravenously, and if we do it it would probably happen in the fall. We are currently trying to taper her oral prednisone (the drug that makes her gain weight and makes her head "feel crazy") because if she does the trial, all her other meds need to stay constant, and her doctor doesn't want her to stay on such a high dose of oral steroid for so long. So it will take some time to gradually reduce that med, while watching carefully to make sure that the disease doesn't break through again as a result. If it does, we may need to re-evaluate. But, we've been reducing for a couple weeks already, and so far, so good.

We're on the books with an appointment in August with a specialist in Chicago, but we are checking with that doctor now to see if it's a good time for us to go - since we are kind of in the middle of trying something new. It might be better to wait until we have a clearer idea of whether it's working.

In happy news, some friends are helping organize a big yard sale to raise funds for us, and for JDM research. It is really taking off - growing by leaps and bounds - and the response from the community has been incredible, to say the least! We are also looking to get media coverage to raise awareness and right now we're pretty certain that the local paper, the Alameda Journal, will feature the story; we're still working on other outlets. We are lucky to have a lot of savvy friends who know how to make this stuff happen.

And THANK YOU to everyone who made a donation to Cure JM in Mielle's honor! It was so great to hear about donations coming in. She has fallen a little behind in making her art pieces for donors, but they will come eventually! And I've just been informed that Mielle has set the Cure JM record for the most donations made in her name. Hooray to everyone!

If you meant to make a donation, but forgot, or want to give more, here's the website again:

www.curejm.com

I want to set up a blog which I can update more regularly, so loved ones can just go there to read the latest news rather than waiting for email updates, but just haven't gotten to it. Maybe I'll try to have it in place by the time we do the yard sale (July 26) so that I can share pics, etc. more easily.

much love,
Suzy

www.curejm.com

This was sent May 10, 2008. Our mounting frustration is apparent...

Hey there -

Another update, and a shameless fundraising appeal. (You've been warned!) And this is loooooong. Sorry.

Mielle did well with the iv steroid treatments. The first go-round was a series of three infusions on three consecutive days. Obviously, it would be hard under any circumstances, but the whole thing was made worse by the timing of our appointments - they got progressively later, and by the end we weren't getting out of there until nearly 10 pm. (The alternative to that lousy scheduling was to wait another week, which we weren't willing to do). However, Mielle handled it well, for the most part, especially after she was settled in with iv dripping, watching a movie.

Anyhow, we survived! And two weeks have passed, and she had another treatment a few days ago. Her skin is definitely looking better looking better, and we're hopeful this means the treatment is having a positive effect. She hasn't reported much change in her leg strength; she's functional but slow on stairs, awkward getting up off the floor, etc. The next step, if iv steroids don't do the job, is a treatment called IVIG, which is an intravenous infusion of immune globulins, a pooled blood product. Yes, it sounds a little creepy some have had good results with it. (And some haven't). The whole treatment plan is very hit or miss - "Let's try this combination of toxic chemicals, and if they don't work, we'll try a different combination of toxic chemicals, and if that doesn't work, we have this other combination of toxic chemicals we can try..." and on and on.

Sorry to sound so negative, but quite frankly, it stinks that there is not a better alternative to treat this disease (juvenile dermatomyositis -- nobody can pronounce it, much less remember it, so I'm giving the name here again. Here's how to say it - break it into parts: der-MA-to-MY-o-SI-tis).

Don't get me wrong - I'm glad to know what it is, and I'm glad that treatments exist, but even when they work as hoped (which is NOT all the time), these treatments are brutal. I've talked about the challenges of steroid-induced personality changes and rage (there are really no words to describe how it feels when your 5-year-old girl says that her brain feels "like it wants to explode out of my head and beat someone up"), and raging appetite and weight gain, but there are other complications that can happen - as a result of the treatment, not the disease - such as diabetes, high blood pressure, bone loss, and bone death. (I hadn't even heard of "bone DEATH" before. Nice.) Stunted growth (Mielle hasn't grown taller in months... but then again, the disease itself also causes stunted growth, so maybe I'm being unfair with that one!) Stretch marks. Thin skin. Cataracts.

I'm just trying to express that even when things are going well, it's awful to see, and live, and experience, the effects of these drugs. And when things aren't going well, it's indescribable. We are doing our best to stay positive and all that jazz, and I think we're doing ok at that. But I'll say it again: there needs to be a better option to treat this disease.

Which leads me to the shameless fundraising appeal. There is an outstanding organization called Cure JM, and it was founded about 5 years ago by two family members of kids with this disease, a mom and a grandmother (two different kids/families). They have done amazing, amazing things in this short amount of time. They have created a website with oodles of information, and a message board so people like me can communicate with one another. They organized the research and publication of a book that covers literally every aspect of this disease. They have awarded over $1.5 million in research grants, and funded a newly-opened clinic at George Washington University that is solely dedicated to the study and treatment of this diseases (as well as the adult version). According to the announcement press release, this clinic clinic was ENVISIONED DIRECTLY BY MOTIVATED PARENTS, AND MADE POSSIBLE BY A GRANT FROM CURE JM.

Since JDM (the "hip" lingo for juvenile dermatomyositis) is so rare, it doesn't get much funding, etc. and so it's up to us to make it happen. Cure JM has shown what is possible, and they are working hard, and effectively.

Just so you know, there is currently no cure at all. People often aske me if Mielle will outgrow this, and the answer is "no". Here's the breakdown: About 1/3 of afflicted children will eventually achieve remission after some number of years of treatment (2 at a minumum, 6 or 7 at maximum), and will never have a recurrence. About 1/3 will achieve remission, but will suffer one or more relapses, and when that happens you start all over again at the beginning with the treatment regime. These relapses (called "flares" in the lingo) can be triggered by something as simple as a sunburn (a SUNBURN!! I mean, come on!!), are often more severe than the initial onset, and they can occur years after remission. About 1/3 will never get to remission, and will always need to be on meds to try and control the disease. All of this is just to say that a child does not outgrow the condition, and basically the uncertainty about whether it may recur will always be there. This needs to change; we need a cure.

Back to Cure JM, and money - it is completely run by volunteers, mostly parents of afflicted kids, so literally ALL of your donation goes to funding research, providing support to kids and families like ours, and raising awareness about the disease.

So, you can see that any money donated to this organization will work hard to help Mielle, and other kids like her, and many other kids who are worse off than her.

You can check out the website:

www.curejm.com.

Don't be put off by the (in my opinion) cheesy intro! You can read lots more about what they're doing. It's all good. There are lots of prominent "click here to donate" links, so I'm confident you can find your way! (And of course, it's tax-deductible).

And, extra-special bonus -- everyone who makes a donation, of any size, in Mielle's name will receive a personal, handcrafted thank-you gift from the hands of Mielle herself! She makes super cool art and you will be a lucky owner of an original piece... maybe a drawing, maybe a finger-knit, maybe a little sewn doo-dad, maybe a popsicle stick creation. Who knows?

If you don't want to donate to them directly, you can still do something to help. There is an organization called igive.com, and if you register with them and click through them first when you shop at tons of online stores (all the biggies!) then a percentage of the $$ you spend goes to Cure JM. Here's the link:

http://www.igive.com/welcome/warmwelcome.cfm?c=30238&m=0

Honestly, this one is a no-brainer. It's so easy, and it can help assuage your guilt about spending too much money at Old Navy!

Friends, I apologize for the long-winded post. I've been composing this appeal in my head for months, and it feels good to finally put it down and send it out. Thank you for all your love and support (and I apologize that there are many email responses from y'all, from the last update, that I have not responded to personally -- yet! I appreciate them all - but we're just doing the best we can over here...)

We are scheming about a couple of fundraising type events for the local yokels (a huge yard sale, maybe some kind of musical event) - not sure but will keep you posted. And in the meantime -

PLEASE DONATE!!!

PLEASE DONATE!!

Finally, what shameless fundraising appeal would be complete without some sappy images to tug at your heartstrings? Here they are. The first is a shot of a poem Mielle wrote for school. Allow me to translate:

When I grow up I will be a artist
I will work the hardest as a artist
I will paint the ocean blue
To share them with you

xxooo

Suzy

Setback

This one was sent around mid-April 2008.

Hi,there -

I apologize that I haven't sent out a report on Mielle's condition for a while. I was having a hard time sitting down to do it, even when things were progressing well, because it's all so very difficult and complicated and emotional... and then, just after I finally wrote an update and was about to send, things changed.

After about 4-5 months of steady progress, Mielle is currently suffering a relapse. It's not as bad as it was in the beginning, but the muscle weakness and pain is definitely back.

Although we previously had a lot of confidence in her rheumatologist at Children's Hospital, we'd begun having doubts and now that she is having this setback, we felt he wasn't being responsive enough to her condition. We decided to seek a second opinion at Stanford. We took Mielle there yesterday, and have decided to move her under their care. We agree with their assessment that her relapse indicates a need for more aggressive treatment. She's still on the oral steroids, and a few weeks ago we switched to giving her the methotrexate (which also suppresses the immune system) weekly by injection. (Previously, she got that orally, as well).

In addition to this, she'll be having intravenous infusions of steroid, hopefully next week (IF she can get on the schedule). Initially, it will be a series of three infusions on consecutive days. Then one infusion every two weeks for 2-3 months. Then, spacing out to every 4 weeks, and so on.

We'd hoped we wouldn't have to go to this more invasive treatment, but the disease is obviously not being controlled with her current regime. I read that one dermatomyositis expert said something to the effect that if the oral steroids are a handgun in the fight against this disease, then the iv steroids are a bazooka. We need a bazooka.

"The experts" also indicate that early, aggressive treatment is key in achieving remission. The idea is to slam the, uh, heck out of the disease at the outset. If treatment is not aggressive enough, it can actually sort of "train" the immune system to continuously flare up again whenever the meds are tapered, and create a situation where the disease becomes more chronic. We don't want chronic, we want remission.

There are other things that can be tried, if this doesn't work as well as it needs to. But we are hoping this will be as extreme as we need to get.

Attached are recent pics. You can obviously see the physical changes that the steroid has created in MIelle, but I feel like you can also really feel the turmoil and struggle that is going on in her body, when you look at her photographs. It's heartbreaking. But her spirits are good. We still have some issues with the steroid-induced rage, etc. but it hasn't been nearly as bad as in the beginning. The second shot is with Uni, Mielle's rock-star friend who was kind enough to come over and spend time with her a while back.

Lucien is just dreamy, a little angel whom we all adore. He's doing a lot to help all of us through this hard time. We are grateful.

Please continue to keep us in your thoughts and prayers.

So far, so good

Update # 2, around the end of November 2007, after about one month of treatment -

Hello friends,

Just wanted to update everyone on Mielle's situation. I won't lie, it's been a challenging month dealing with the meds she is on. The prednisone really messes with Mielle's temperament, making her mood swing wildly (and I mean WILDLY). Super hyper and manically happy one moment, completely falling apart in pieces the next. It's been exhausting trying to navigate through this each day, but we're managing and lately we have had some better days. Not sure if that's just a "some good days, some bad days" kind of thing, or if things are actually improving in a meaningful way. The doc says the "moodiness" (understatement!!) goes away after "a few weeks", but then again he never even told (warned) us about that particular side effect in the first place, and he talks about it in that "pooh pooh" kind of way that old-school doctors have, as if it's no big deal in the first place, so... I'm skeptical! But I still hope that he's right!

The other med she's on, methotrexate, is only once a week and seems to really knock her out when she takes it. We figured out that it's better to give that one late in the day so she can just konk out and go to bed.

Okay, so that's the bad news. The really, really good news is that we are getting the feeling that she is responding to the meds. Just in the last few days, she has been noticeably stronger in very small, but very tangible ways. It is a huge relief to see some results, however subtle. We know that it is going to take time for her to get her full strength back, but it's really wonderful to see some positive signs that she is on the mend.

One weird development: when speaking with the school nurse about this, she told me that there is another girl at Mielle's school that has this disease... !!!! I've spoken with the mom on the phone, and we have plans to get together and probably get the families together also. Their daughter just went off her meds three months ago, after three years of treatment. She was diagnosed right before she turned 4, so she's 7 now and in 2nd grade at Mielle's school. Her little brother is in kindergarten there, but he's not in Mielle's class. Anyway, this mom (Michelle is her name) seems very ready to reach out to us, and I think it will help us tremendously to share experiences and see a real live example of another family that got through this situation, and is now on the other side of it. Mielle is excited to meet Kendall and I hope it will help her as well.

We are so blessed in our community of friends. You have rallied around us in a way that really squeezes my heart. Thank you so much to everyone, for your love and support. We are feeling every bit of it, whether you are here in Alameda and stopping by for play dates, or you're far away and sending your love and positivity to us from a distance. We feel and appreciate all of it.

It's hard, but we're managing. It still feels very surreal at times, that this is happening to her and to us. It's really bizarre to be pumping such powerful pharmaceuticals into her tiny little body, but at the same time I'm so thankful that we have a treatment for her. It's a love/hate relationship with the treatment, I guess.

I really hope that the darkest days are already behind us; now that we can actually see some signs that the meds are working, things definitely feel more hopeful. If Mielle responds well to the treatment, then we should be able to begin reducing the prednisone dose at some point relatively soon, hopefully not longer than two more months from now (although we'll be increasing the methotrexate, which has it's own set of side effects... but supposedly not nearly as intense as the prednisone). We just have to hope that we can move through all of this as quickly and smoothly as possible. Right now, we're taking things one day at a time, and each day brings us closer to the other side.