Second Anniversary Eve...

For whatever reason, I can’t figure out what I want to say about it & can’t put a finger on how to feel in this moment. It was two years ago tonight that Taylor was admitted to Children’s in Milwaukee… we were in the ER for hours - they knew they wanted to admit her… they had no idea what floor to put her on because they had no clue what she could possibly have.

What I didn’t realize was that my sister Amy was on her way as well and showed up minutes after Taylor was put in an ER room, just to be there so we didn’t have to face it alone – and stayed until Taylor was brought upstairs… and then was back the next morning with a monster sized mocha coffee and chocolate covered espresso beans :) just minutes after visiting hours began and was the voice telling me and Taylor it was all going to be ok when the team of Dr.’s came in to explain the new normal called Dermatomyositis (JDM)…

Tonight I am grateful for family and friends, I can’t explain what ‘just being there’ meant to us… I am insanely grateful for the Rheumatology Dept at Children’s hospital in Milwaukee… I can still picture all of your faces… you diagnosed an extremely rare disease in less than 24 hours that many parents are left agonizing over for 3-12 months +, nothing short of Angels watching over her that week… and most of all I am grateful and blessed to be called mom by this sweet little 7 year old!! I love you honey :)

That's it for now... I haven't talked much about the real happenings before and I've been shutting certain memories out all this time because they can be painful in about 500 different ways, but there was a mountain of good things intertwined in the events of the last two years... and it would be a shame if they were lost or discounted.

It's just crazy... I came across this quote in an email, I've heard it before, but this time it really hit me. And it is spoken by one of my all time favorites...

"The walls we build around us to keep out sadness also keep out the joy." --Jim Rohn

Huh, I was reflecting on this quote all week for an entirely different reason, but it was really meant for me too.

Happy Monday everyone!! It's going to be a great week!!

The story we tell...

Wow… I know everyone says this after a posting hiatus, but I really had no idea it had been this long. I probably won’t get into all of the small details of the last five months, but I will surely get you all up to speed on progress… you’ll question the sanity and purpose of calling it progress once I list the current meds, but trust me when I tell you that she is in the right hands... There is no cure, only results of research & she is doing amazing.

I think that the difference between mourning and gratitude is all in the story we tell ourselves... don't get me wrong, there is a time, place and need for both, but the goal is to spend the majority of our time in the latter of the two right? Easier said than done some days, absolutely, but when you have this crazy cute girl smiling and giggling back at you, it's pretty hard not to be humbled and have your attitude put in check.

I wanted to share this story with you (I did not write it), maybe some of you have seen it already… depending on the day, it will put a grin on your face, or bring out the tears you’ve been trying to hide, even sometimes from yourself. It is so good! And explains how I feel, SO WELL.

"I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland."

It's amazing... this is just so true. If the trip to Holland did not come with so many dangerous side-effects and pain for my baby girl, I'm confident I'm enjoying Holland much more than I could have ever known how to appreciate Italy :)

Here is the update...

Taylor had a skin flare up in the middle of January… it was caught early and treated aggressively. She did not lose strength or hike up any muscle enzymes, but we did learn that tapering off the steroids is not nearly as clear cut for her as they had initially hoped/thought… so she is back on the IVIG day long infusions down in Chicago; this month was her 4th of 6 rounds. This is the large 6 hour dose of human IgG anti-bodies to help boost, repair her natural defenses to infection while her immune system is being constantly pounded on by other anti-inflammatory and immune suppressing meds. While we'll miss Nurse Celest (because she is such a sweet and caring soul)...we are glad to report that she completed her final in-home IV steroid infusion yesterday.

She is still on folic acid, previcade, calcium, multi-vitamins, oral steroid (prednisolone) and weekly methotrexate injections given at home… but they have added Plaquenil (specifically for the skin reaction) and CellCept. The addition of CellCept was admittedly a little hard to accept, ok a lot. It’s a transplant patient drug, it' just a lot to wrap my head around.

The taper from steroids is the beast… kick starting the adrenal glands to produce their own natural steroids without causing that flare. It will come, it’s finding the right combination for Taylor. In Dec of 2009 it was too hard for her to climb 3 single stairs and it was really her arms pulling her up anyhow and now she’s doing handstands. Remission is not a question of “if” but instead a statement of “when.”

Think I’ve covered most of it… doesn’t she look amazing??? I intentionally peppered in pictures to help shrug off the crappiness of the situation. Love to you all!!! And thank you for your continued thoughts, prayers, and well wishes - we are truly blessed!!!

Saying goodbye to Prednisolone!!!

Where to start... I had a friend point out that it's been since July that I've posted a detailed update... for that I apologize because a few weeks ago I went back and read this blog from the start and wow, I don't want to short anyone of the lessons and appreciation that was picked up along the way. There will be more... I just had to get this one out tonight!

Tomorrow is the last day of oral steroids!

She's been tapering the Predinisolone since October... and now it will join the other retired meds in the cabinet - including the Nystatin, an anti-fungal drug that she swished in her mouth 3 times a day for several months because of thrush caused by the oral steroids (at least it tasted like pineapple and bananas)... it will also join the quickly dropped hydrocodone, prescribed back in March after the surgery to drain the staph infection that exploded in her leg because of the immune-suppressing drugs that are used to control the disease. Going up to the cabinet will also be the Lansoprazole (previcade). The steroids would strip the natural mucus from the stomach lining... so this was used to protect it. She used to go through a big bottle, plus the little one sitting in front of it every month of prednisolone. Pretty amazing and emotional to celebrate that it's done!

I was going to just take a picture of the meds... but she wanted to be in it, along with the Christmas card for some reason... pretty cute anyhow. The yogurt is to sprinkle the previcade on, the one cup is the steroid mixed with OJ and the other is ice water to wash down the caltrate, folic acid and multi-V that are sitting in front of the bottle.

She'll now be down to this:

The folic acid balances her pH... she takes that daily... the little yellow pill. The shot will remain once a week (on Friday's) and the multi-V and caltrate will stay for good... She will stay on the shot for several months to let the disease and her body stay in a holding pattern and keep the disease inactive and quiet while her adrenal glands resume to normal function (remember they were basically inactive from producing natural steroids while receiving the man-made doses...)

I remember the first weeks home from the hospital, I wouldn't let anyone else touch her meds... If I was running late, well guess what, I was late... I could not physically leave the house without checking, and double checking and staring at her meds, just to make sure that I had done it right. I would have to give myself a pep talk some days to leave them on the counter for her. Sometimes when I would get her prednisolone in the cup, and it didn't look right to me... I would pour it back in and re-measure. Getting those meds right was the only thing that I could do for her, and I couldn't let myself screw it up. It was such a helpless and scary place to be... but then look at this little girl. She willingly said ok... every morning. No complaint... at all. She trusted, and looking back - that is just more amazing then I could ever give her credit for. Here honey... I know you can hardly make it ten steps without crying because your legs hurt so bad. I know that you can't pick your head up, much less sit up to go to the bathroom on your own without calling for someone to help you... but take this line up of nasty medicine and try to go about your day...and someday it will all be ok. Ugh... I remember at Christmas last year, you couldn't even touch her shoulder without her breaking down in tears. Her muscles had been disintegrating and hurt so bad to even touch. We didn't know enough about the disease yet at that time, so the fear in our faces had to show, but she pushed on.

Every morning she would sit down to that line up... I could see she was tired and I'd just say "honey... this is just for now, not forever. I know it's hard, but just remember, if you do it now, you won't have to do it as long."

Now we stayed as positive as we could at all times... we didn't even say the word disease in front of her... and mostly refused to even recognize that this bastard had a name, but there was one morning in particular that the fatigue and frustration must have been written on my face and I couldn't, or didn't mask it... this little girl looks at me and says "Mom... this is just for now, I'm not going to be doing this forever you know."

As a parent you say things and hope they stick, sometimes you say things and it's more just so that you can hear and believe them yourself... but when you hear them come back at you in the form of wisdom, you start to believe you're doing ok, or maybe that it's really not in your hands to begin with. Faith, belief and Guardian Angels... and one strong and savvy little six year old - there are no words. I almost feel guilty some days, it doesn't go this well for all of them, sometimes I have to read the words "life-threatening" to truly appreciate the magnitude of healing we've witnesses... I'm just so grateful.

Congratulations baby girl... We're all so proud of you!

Had to stick in a picture of the Christmas tree and Zhu-zhu pets... Doesn't she look amazing? Happy New Year everyone! It's going to be a great one!

My Final Plea: Vote Cure JM in Pepsi Refresh Today, Get Others to Do the Same

Today is the last day of voting for the August Pepsi Refresh Challenge... to win $250K for CureJM... I copied this blog from another family that I follow that is on the backside of their daughter's treatment. He is a professional blogger and does a phenominal job detailing their journey, so I thought I'd save time and just use his...

I must warn you, it's emotional, and hard to read, and rears back a lot of bad memories from the last 9 months. No child should ever have to deal with so much! Taylor's remarkable recovery would not have been possible without CureJM! It is through them, that we found Dr. Pachman...who took over her treatment, and uses the funds raised by this non-profit for research for a cure! I'm begging for help...no child or family should ever have to suffer again! We can't let this money get away from us...the $250K would be half of what is normally raised in a full year!! Thank you so, so much!

Sincerely,

Shawn, Beth & Taylor

This is Thing 1 about a month into her diagnosis of juvenile dermatomyositis in 2002. She’s nearly 3 years old in this photo.

That’s apple sauce and mashed potatoes in front of her. That’s all she could swallow because the disease had weakened her throat muscles so severely.
Soon her voice became an intermittent gargle. She began coughing frequently.

The doctors said when Thing 1 swallowed, food and drink sometimes shot upwards into her sinus cavity or slide helplessly into her lungs. This resulted in aspiration pneumonia.

Shortly after they told us this, I helped the nurse shove a NG tube up Thing 1’s nose and down into her throat so we could be sure food and medicine went where it needed to go.

Then every day, three times a day, a broad-chested Jamaican orderly would strap Thing 1 into a navy blue life-vest. It contained pulsating pistons that rapidly pounded her chest and back to try to loosen the foreign matter that had caked onto the lining of her lungs. After, he would force a vacuum tube down her mouth and try to suck the gunk out.

If he felt the contraption did not break enough of the gunk up, he would roll Thing 1 onto her stomach and administer disciplined blows with his hands as he tried in his thick tropical tones to convince her not to fight him.

Thing 1 recovered from this common complication of her autoimmune disease within a few months

Her screams during treatment – they still pierce my brain and heart, even in their distant echo, no matter how many mental walls I create to baffle the sound.

While Thing 1 is doing well though still on a handful of daily meds, other kids with juvenile myositis (JM) diseases have not been as lucky.

Mikey Galvin, above, developed PCP pneumonia as a complication from his juvenile myositis disease. He went onto the lung transplant list.

He died at age 3.

Mason Smedley, above, received his diagnosis at age 17 months. He suffered a perforated bowel and the heavy steroid dose use. During surgery to remove a portion of his colon, it was discovered that he also had an enlarged heart. The prescribed steroids had also resulted in high blood pressure, a suppressed immune system, cataracts and pneumonia which left him with a scarred lung.

Mason, who has calcium deposits encasing parts of his limbs, is still plugging along. On Sept. 11, a concert will be held on his behalf in Portland, Ore., to raise funds to find a cure for his disease.

And I’ve already told you about Cole, who died two weeks ago.

You know what I need you to do; but I also need your help getting others to do the same.
On this last day of voting for the $250,000 Pepsi Refresh grant for August, I need people to get as many NEW voters as possible to text or log-in and cast ballots for Make JM a Memory.

Send an e-mail to people on your Christmas card list.
Ask people in the cubicles next to you.
Paint your car window.

Forward this post on to someone you know. Stumble it, Digg it, I don’t know – print it out and shove it under a windshield wiper. Anything.

Even you get us one extra text vote, that’s one more than we had before. One more vote closer to finding a breakthrough to end this disease.

If Cure JM wins, every dollar, every cent, of the grant money would go into research by doctors at Children’s Memorial Hospital in Chicago, George Washington University in Washington, D.C., and the National Institutes of Health who have selflessly dedicated their professional careers to finding better treatments and a cure for a rare autoimmune disease that most people never heard of.

These are true heroes who are working to create a better world for children, but they need funding to do their work.

So please, vote 3 TIMES today:

(1) Send a text vote: Text 100850 to PEPSI (73774) (standard text messaging rate apply)

(2) Use the Facebook app: http://bit.ly/CureJMonFB

(3) Vote directly from the Pepsi website site at http://www.refresheverything.com/makejmamemory

Then help us find others to do the same.

Not for me. For the children.

The Big Chicago Visit!!

Last week we made the trip down to Children’s Memorial Hospital to make her rounds for the month :) On Tuesday she saw Dr. Janiki…the Orthopedic surgeon who drained the staph infection in March…just one final check before they release her…again, we sat longer in the waiting room than we actually saw the good Dr., oh well, I guess its protocol.

We spent the afternoon with Aunt Lisa, who lives in the big city, and went to Navy Pier, ate some McDonalds, and put together a rather expensive, but totally worth it, colorful and adorable bear at Build-a-Bear…all things which can be done back home…but just seems so much cooler to do out of town when you’re six years old. We spent the night playing Mario Brothers on Wii, Taylor had a blast and I think Lisa was happy to have someone to play with too! They own a second story condo with a balcony, which entertained us for quite a while as well…Taylor brought the Kitty squirt gun outside and a few times I had to catch her when people in nice business suites were walking by because she was aiming at the cars parked on the street…I can’t tell you how much fun we are having enjoying her new found health…her deep belly giggle is back…I hate to say it, but I had forgotten a little what it sounded like, and part of me thinks we were defending ourselves from those memories a little because it just hurt so bad to look back at the pieces of her that we were missing so much. Life is just so good now!

This is a pretty emotional journal to write as I’m sure it is to read because of the rollercoaster of emotions that our families and friends have been through with us over the last 7 short, but excruciating long months…it was almost surreal when Dr. Curran looked at us only a few short minutes after being in the room and says “it’s time to start getting you off of these drugs…” Oh my God, you just pinch yourself. I say “really?” almost in disbelief…well actually it was disbelief. We knew how good things were going, but you still protect yourself from disappointment…

Dr. Curran examined her and proceeded to exclaim that there really isn’t any sign of the disease left in her body…she joked with Taylor that she had been lifting weights since they had seen her last because she had gotten so strong. Taylor just giggled…I love that giggle. If you remember the “pitting” in her eye lids (the dark creases in the corners), they are faded and no longer red, a little brown, but they may scar a little. She had inflammation in the roof of her mouth and gums that is now non-existent. The only things left are the cushingoid puffiness in her cheeks…and a cute little hairy forehead from the steroids…which will all leave as we continue the big taper!!!

So the awesome news is that her IV steroid is backed off to every other week…for 3 doses and then every three weeks for just 2 doses…and then it’s DONE!!! She will then be backed off the oral steroids (she’s on a daily maintenance dose), and then the methotrexate shot that she still gets weekly. Just amazing that we are talking about these things already…this little girl has been healing herself.

She got her second dose of IVIG on Wednesday as well, an 8:30 appointment that was finished around 4…she’s such a trooper…for those of you that know her infatuation with movies…meaning that when she finds one she likes, we watch it over and over and over. Wednesday’s selection was “Cloudy with a Chance of Meatballs” I lost track of how many times we watched it.

Two more doses of IVIG left to go… then they will retest her Igg levels to see if they are stable…hopefully that will be it! She didn’t have any infections when she was a toddler, so they thinking that she isn’t naturally deficient, just suppressed from the steroids.

Physical therapy is backed down to every other week as well…she’s getting so strong and we were told “it’s time to let her be a kid again.”

Words can’t explain…We second that motion!!! Let the taper begin!!!

Vote, Vote, and Vote again :)

Hey there everyone... this post is for CureJM!!! We have to tell you, if we haven't already made it clear, that without CureJM, we would not have found her specialists down in Chicago that have completely turned around her course of treatment and have changed Taylor's situation for the best!! We just can't put into words what the support and information has meant to us and other JDM famlies!

Here's the scoop...every month, Pepsi is awarding $250K to 2 organizations that can stir up the most votes in the month of July...you can vote everyday...everyone in your house hold can vote everyday, just as long as they are over 13!

Cure JM is ranked 17 at this time...yesterday it was at 35!!!!!!! Trust that every single vote will count and every single vote gets the organization closer to $250K that will move mountains to fund research for a cure!!!

Thank you, thank you, thank you for all of your help!

Lots of updates...she's been busy

The PICC line….is out! It was removed on May 27th. Taylor absolutely floored the doctors at her last visit. They backed her IV steroids off from twice weekly down to once. After the Dr.’s left the room, Nurse Melanie comes tearing into the room exclaiming “Once a week, are you kidding me? You don’t understand, it just doesn’t ever happen this quick!” And all we could do is smile, and I thought to myself…it sure does for my Taylor. It doesn’t get any sweeter!

So now, Nurse Collette comes once a week to give Taylor her dose, the only need for an in home nurse before was to change the PICC line dressing. First step is to put on the numbing cream, wait, start IV and then sit and watch a movie for 45 minutes to an hour…all the while Taylor tells her the random events of her week, all things relative, it is quite an enjoyable time. Sometimes I think we miss out on these important conversations in our loved ones lives when we don’t take the time out of our purposefully crazy busy schedules… IV comes out…and on with our evening. No more showering with a covered arm, no more tears when swimming comes into a conversation… speaking of swimming…

Taylor has been granted a wish from the Make-a-Wish foundation! The same night that the PICC line came out, two “Wish Makers” came to visit. I had referred Taylor after the extended stay at Children’s in Chicago…That was a tough phone call to make, but I was so excited to know, that Taylor could have something special of her own, for everything this little girl has been through. We are just blown away by their generosity! They came equipped for the visit with balloons and gifts for her…Taylor did not decide what her wish would be until the next morning…she hopped out of bed and declared, “Mom, I know what my wish is…I want a swimming pool!” and she has never wavered since. This wish is especially special, because we didn’t tell anyone she would be granted one and Shawn and I didn’t make any suggestions for her, we wanted her to dig down deep, dream big, and figure out what she really, really wanted.

The project is off and running, the Doctors have approved the wish, we’re in the process of getting the permits…and then they’ll get started! They want to get the project going as soon as possible so that she will have part of the summer yet to enjoy it. It will be a 24’ round above ground pool and will include a heater, chemicals for the first season, the filter and vacuum, solar cover, and winter cover. I just can’t believe it!

More Updates… They did more testing on her immune system during the last visit, they had run all of these tests in her first visit, but wanted to make sure the results weren’t being skewed by the rampant staph infection in her leg. They tested her Igg levels this last visit (and I apologize to any of my nursing friends and relatives, I hope I don’t slaughter the terminology too much here, I’ve understood most everything up until now, but I’m still struggling to wrap my head around this one). There are 4 tiers of igg in our blood, her total levels are at a 450, the low end of the acceptable range is 600. Here’s a definition for you: Immunoglobulin G (IgG), the most abundant type of antibody, is found in all body fluids and protects against bacterial and viral infections. Well hers are low, still in a good level that she has response to infection, just not enough for their liking, she is more prone to infections. As she is weaned off the immune suppressing drugs, the last thing she needs is another infection coming in and stimulating the response that started this whole disease rollercoaster.

She has now started an IVIG treatment…they take these specific antibodies out of donated plasma, and IV them into her. Her first infusion was on Monday…a 7 hour process. She did awesome, taking everything in stride, they pre-medicate with Benadryl and Tylenol along with her IV steroids, just to make sure there isn’t a reaction to the IVIG. Not sure how long she will have this done, they will plan at first for one time per month and test the levels each time to only do it for as long as needed.

The thing that I don’t understand is how they are giving her the IVIG and not stimulating her immune system…because remember all of the immune suppressing drugs that she is on…so we’re tricking her immune system not to attack her with the prednisone and methotrexate, but now trying to build her antibodies with the IVIG, and somehow the two do not contradict each other…that’s what I don’t get yet, but I’m fully trusting…she’s doing great.

She can now pull her head completely off the ground and get a shoulder up like she’s trying to do a sit up, pretty pretty awesome!

Sorry this is a lengthy one…but lots has been going on the last month.

Walk for Taylor… Taylor’s incredible teacher, Mrs. Wackwitz, coordinated a fundraiser for CureJM. She wanted to do something for Taylor, to give her and her classmates a memory of their year together, and I’m sure the walk exceeded her expectations! The 4K and 5K classes walked a large block around the schools in honor of Taylor. Most of them wore blue, the color for CureJM, a lot of Parents came out to join us…there was a second grade class that raised money as well because they were so touched by her story. A third grade class came over in the morning and gave $171! The teacher had told them that she would match whatever they raised! From what I had heard, several students got together and had a lemonade stand the weekend before for the Memorial Day parade, and raised $12! CureJM donated rubber blue bracelets that say “CureJM” to every participant. And all together “Walk for Taylor” raised over $2,080 for CureJM, which funds programs for research and support for families of Juvenile Dermatomyositis. The "Thank You's" may sound like a broken record, but we cannot express it enough! What a memory for Taylor… Thank you so much!