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....
Monday, October 13, 2008
Thursday, October 9, 2008
JDM Timeline
I realize that it is really confusing to try and figure out what has actually happened in the last year (and even before that) by looking at the past posts, so I had the idea to break it down with a timeline of events:
January 2007
Mielle starts having super flushed cheeks all the time.
Feb 2007
She sees a pediatric dermatologist, who say's it's probably Fifth's Disease (also called "slap-cheek" disease"), despite the fact that Fifth's usually only lasts a week or so. He said to come back if it doesn't clear up in 8 weeks.
April 2007
8 weeks later, and it had cleared up. Sort of. Mostly. At least, it wasn't the same, so we THOUGHT it had cleared up. Basically, for several months, the redness would come and go and in different spots, and it was worse after being out in the sun. We really didn't connect it to the earlier condition; we didn't realize it was an ongoing thing. We thought it was just a weird reaction to the sun. We had NO IDEA that it could be something serious (can you sense the defensiveness? It is hard to look back on these events; it's hard not to blame ourselves).
Mid-September 2007
I was sufficiently concerned about the skin stuff to take Mielle to see my own dermatologist. She gave us a topical steroid cream and instructed us to come back in three weeks if it didn't help, at which time she would do blood tests for lupus.
Early October 2007
The steroid cream did nothing, but in the meantime the muscle involvement began, and this changed everything. By about the third week of October, it was obvious that something was wrong - Mielle was exhausted, wouldn't walk far, had trouble with stairs, and eventually just refused to climb them. I took her for a same-day appt at her pediatrician, who ran the lupus blood tests. They were negative. We were referred to a pediatric rheumatologist at Children's Hospital Oakland.
October 31, 2007
Mielle's appt with the rheumatologist, and her diagnosis of juvenile dermatomyositis. We were actually surprised to get a definitive diagnosis at that appointment; we thought we would be in testing hell for a while before finding the cause. Mielle begins that night with the oral steroid, prednisone, as well as oral methotrexate. We were relieved that her doctor didn't feel her disease was severe enough to warrant intravenous steroid treatment or methotrexate by injection. She was just taking it orally.
Nov 2007 - Feb 2008
It was a pretty horrible winter, with Mielle suffering the effects of the disease and then the meds. The steroid made her unbearably, explosively moody and full of rage. Incredibly difficult to deal with. She started putting on weight and experiencing brutal headaches and nausea. By about December, though, her strength and energy was really showing improvement - the meds were working. Under dr. advice (of course), we began tapering the oral steroid and presumed the methotrexate (which takes 8 weeks or so to begin working) would do the job of controlling the disease.
March 2008
By the end of the month, it was clear that the muscle pain and weakness was back. We were spinning. We had lost confidence in her doctor at Children's, but we didn't know where to take her. UCSF? Stanford? A highly-touted specialist in Chicago, or one in Boston, or one in DC? Mass confusion, anger at the first rheumatologist, mass guilt that that we didn't get a second opinion at the outset, just a horrible time. This is also when Lucien's delays were emerging. The next few months would be some of our darkest.
April 2008
Through a sort of random series of events, we end up taking Mielle to Stanford, where she began intravenous steroid treatments (which means she was hooked up to an IV and began receiving the steroid directly into her vein) and we increased her methotrexte, and switched to weekly injections (which is more effective). She stayed on the oral steroid as well. The first intravenous steroid "session" was every day for three days; each treatment took about 4-5 hours total. After the inital set of three treatments, she received them one time every two weeks for a couple of months. I also made an appointment for her with the specialist in Chicago; at this point, my faith was shaken and I felt I wouldn't be satisfied until that doc saw her.
June 2008
The intravenous steroids had helped bring things back under control, but she seemed to have plateau-ed. Some kids are "refractory" which basically means that conventional treatments don't work and you just have to keep trying other drugs, more and more experimental things. It was looking like Mielle would be in this group. We decided the next step would be an intravenous drug called IVIG, which is somehow derived from donated blood. Lucien, for his part, had his bones x-rayed to rule out certain genetic abnormalities, and his x-rays were normal.
July 2008
Miraculously, or at least it seemed that way, she started to improve. My theory is that the methotrexate by injection was finally kicking in, after about 10 weeks.... so, hallelujah, it was working after all. We decided to hold off on the IVIG and also to wait til after the Chicago trip to make any big changes to the treatment. In other news, Lucien had an MRI of his brain, which showed some abnormalities, but did not point to a definitive diagnosis and was not definitively determined to be the cause of his delays. After slogging through all the assessments and red tape, he finally really began with services through Regional Center.
August 2008
Our first appt in Chicago, which showed encouraging results about the level of Mielle's disease activity - not as active as we feared it might be.
Present (October 2008)
Continuing on current course, methotrexate injections 1x/week, still on the oral prednisone but slowly, slowly tapering. Mielle's energy and strength seem pretty darn good. Her skin is ok; rash is still present but it's not extreme. She continues with regular appointments at Stanford and will have another appt in Chicago in early December.
We are coming up on a year since Mielle's diagnosis, and I'm surprised at how emotional I feel about it. It's been a year that turned our world upside down and inside out. There were times I felt trapped in a nightmare, and other times I felt like I was living in some kind of alternate reality.
But we are, of course, grateful that both kids seem to be on the right track now. We do our best to just take things day by day, and hope that it continues.
Thanks for all the love and support from our friends and family; we never would have made it this far without you. I sincerely hope that the worst is behind us for both kids (and that there isn't some other crisis looming), but one thing we've learned is that you just never know what is around the corner!
January 2007
Mielle starts having super flushed cheeks all the time.
Feb 2007
She sees a pediatric dermatologist, who say's it's probably Fifth's Disease (also called "slap-cheek" disease"), despite the fact that Fifth's usually only lasts a week or so. He said to come back if it doesn't clear up in 8 weeks.
April 2007
8 weeks later, and it had cleared up. Sort of. Mostly. At least, it wasn't the same, so we THOUGHT it had cleared up. Basically, for several months, the redness would come and go and in different spots, and it was worse after being out in the sun. We really didn't connect it to the earlier condition; we didn't realize it was an ongoing thing. We thought it was just a weird reaction to the sun. We had NO IDEA that it could be something serious (can you sense the defensiveness? It is hard to look back on these events; it's hard not to blame ourselves).
Mid-September 2007
I was sufficiently concerned about the skin stuff to take Mielle to see my own dermatologist. She gave us a topical steroid cream and instructed us to come back in three weeks if it didn't help, at which time she would do blood tests for lupus.
Early October 2007
The steroid cream did nothing, but in the meantime the muscle involvement began, and this changed everything. By about the third week of October, it was obvious that something was wrong - Mielle was exhausted, wouldn't walk far, had trouble with stairs, and eventually just refused to climb them. I took her for a same-day appt at her pediatrician, who ran the lupus blood tests. They were negative. We were referred to a pediatric rheumatologist at Children's Hospital Oakland.
October 31, 2007
Mielle's appt with the rheumatologist, and her diagnosis of juvenile dermatomyositis. We were actually surprised to get a definitive diagnosis at that appointment; we thought we would be in testing hell for a while before finding the cause. Mielle begins that night with the oral steroid, prednisone, as well as oral methotrexate. We were relieved that her doctor didn't feel her disease was severe enough to warrant intravenous steroid treatment or methotrexate by injection. She was just taking it orally.
Nov 2007 - Feb 2008
It was a pretty horrible winter, with Mielle suffering the effects of the disease and then the meds. The steroid made her unbearably, explosively moody and full of rage. Incredibly difficult to deal with. She started putting on weight and experiencing brutal headaches and nausea. By about December, though, her strength and energy was really showing improvement - the meds were working. Under dr. advice (of course), we began tapering the oral steroid and presumed the methotrexate (which takes 8 weeks or so to begin working) would do the job of controlling the disease.
March 2008
By the end of the month, it was clear that the muscle pain and weakness was back. We were spinning. We had lost confidence in her doctor at Children's, but we didn't know where to take her. UCSF? Stanford? A highly-touted specialist in Chicago, or one in Boston, or one in DC? Mass confusion, anger at the first rheumatologist, mass guilt that that we didn't get a second opinion at the outset, just a horrible time. This is also when Lucien's delays were emerging. The next few months would be some of our darkest.
April 2008
Through a sort of random series of events, we end up taking Mielle to Stanford, where she began intravenous steroid treatments (which means she was hooked up to an IV and began receiving the steroid directly into her vein) and we increased her methotrexte, and switched to weekly injections (which is more effective). She stayed on the oral steroid as well. The first intravenous steroid "session" was every day for three days; each treatment took about 4-5 hours total. After the inital set of three treatments, she received them one time every two weeks for a couple of months. I also made an appointment for her with the specialist in Chicago; at this point, my faith was shaken and I felt I wouldn't be satisfied until that doc saw her.
June 2008
The intravenous steroids had helped bring things back under control, but she seemed to have plateau-ed. Some kids are "refractory" which basically means that conventional treatments don't work and you just have to keep trying other drugs, more and more experimental things. It was looking like Mielle would be in this group. We decided the next step would be an intravenous drug called IVIG, which is somehow derived from donated blood. Lucien, for his part, had his bones x-rayed to rule out certain genetic abnormalities, and his x-rays were normal.
July 2008
Miraculously, or at least it seemed that way, she started to improve. My theory is that the methotrexate by injection was finally kicking in, after about 10 weeks.... so, hallelujah, it was working after all. We decided to hold off on the IVIG and also to wait til after the Chicago trip to make any big changes to the treatment. In other news, Lucien had an MRI of his brain, which showed some abnormalities, but did not point to a definitive diagnosis and was not definitively determined to be the cause of his delays. After slogging through all the assessments and red tape, he finally really began with services through Regional Center.
August 2008
Our first appt in Chicago, which showed encouraging results about the level of Mielle's disease activity - not as active as we feared it might be.
Present (October 2008)
Continuing on current course, methotrexate injections 1x/week, still on the oral prednisone but slowly, slowly tapering. Mielle's energy and strength seem pretty darn good. Her skin is ok; rash is still present but it's not extreme. She continues with regular appointments at Stanford and will have another appt in Chicago in early December.
We are coming up on a year since Mielle's diagnosis, and I'm surprised at how emotional I feel about it. It's been a year that turned our world upside down and inside out. There were times I felt trapped in a nightmare, and other times I felt like I was living in some kind of alternate reality.
But we are, of course, grateful that both kids seem to be on the right track now. We do our best to just take things day by day, and hope that it continues.
Thanks for all the love and support from our friends and family; we never would have made it this far without you. I sincerely hope that the worst is behind us for both kids (and that there isn't some other crisis looming), but one thing we've learned is that you just never know what is around the corner!
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!
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!
Tuesday, October 7, 2008
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!
Have a look at this video of Mielle giving me the beat down in a game of Wii bowling!
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