Sunday, June 29, 2008

Tottie's Pretties

I am so happy to share fun & cute accessories with our little girlfriends & giving back to an organization that our family is so passionate about!

I am making ribbon & material wrapped headbands adorned with gemmed flowers & varied clips of bows & flowers. I call them Tottie's Pretties.

My goal with making these headbands & clips was to have fun, be creative, give something to my daughters that they love & share with other families for a good cause.

Headbands are $10 & clips are $5 & for every purchase made on Tottie’s Pretties, I give 50% to CARRA.

CARRA (Childhood Arthritis & Rheumatology Research Alliance) is an organization of Pediatric Rheumatologists from across the U.S. and Canada, working collaboratively to address critical research issues. They have come together to share treatment protocols and outcomes, and to conduct high quality clinical studies. Through collaboration and research, the CARRA organization will find solutions to the many questions about childhood rheumatic disease, which may ultimately lead to a cure.

They are near & dear to my heart since Charlotte’s diagnosis in the Fall of 2007. How is CARRA is helping our family directly? Charlotte takes a chemo drug called Remicade & goes to the hospital once a month for her IV treatment. Last month, the FDA came out with a study showing children on these drugs are getting cancer. So CARRA is working with the Arthritis Foundation to build a database of children to watch their progress & monitor the children on these chemo drugs. Charlotte has to take such a severe medication because the arthritis in her eyes is not able to be controlled with mere steroids or other anti-inflammatory drugs. We appreciate CARRA’s work on monitoring Charlotte & other children’s progress on these severe drugs.

In June, 10 families bought Tottie's Pretties.

23 headbands & 11 clips later & we have a donation to CARRA this month for: $142.50

THANK YOU SO MUCH FRIENDS!!!

About CARRA...
Arthritis and other rheumatic diseases affect an estimated 300,0000 children in the U.S. Many of these children live with chronic pain and take daily medication in the hope of controlling their illnesses. CARRA doctors are committed to finding the cause and cure for rheumatic diseases in children.

Many questions about childhood rheumatic disease remain unanswered, including: What is the cause? What are the best treatments? What are the long-term outcomes? How can damage be avoided? What is the cure?

CARRA is an organization of Pediatric Rheumatologists from across the U.S. and Canada, working collaboratively to address critical research issues. They have come together to share treatment protocols and outcomes, and to conduct high quality clinical studies. Through collaboration and research, the CARRA organization will find solutions to the many questions about childhood rheumatic disease, which may ultimately lead to a cure.

The Mission of the CARRA organization is to foster, facilitate and conduct high quality clinical research in the field of pediatric rheumatology aimed at improving the health outcomes of all children with rheumatic diseases.

If you have a headband color request or just see what new ones I have cooking up, email me & I would be happy to drop off the tote of Tottie’s Pretties to you!
Thank you again!!

Friday, June 27, 2008

Finally Seeing Rainbows...

I am hoping for a summer of lollipops wrapped in unicorns with rainbow centers. But it sure hasnt started that way. We are starting to see a light... some sun... coming through as each day is getting better for Miss Tottie (ie increased appetite, happier but still very sleepy for naptime)!

Yesterday was Remicade treatment day & she was Ms. Grounchy Pants slash Angry Old Lady more than normal because I am guessing she is still not 100%. Plus our usual bunch of nurses thought it was ok to take vacations or get married. What do you think this is SUMMER!? Cmon people! So Momma got a little short w/ nurses who wanted to explain things to a 2 year old & try and reason with her. More than a few times I had to say, "Just do it, & save the explanation, she's going to scream at you no matter what." Oye vey... explative explative explative.

So, labwork came back & Ped. Rheumy isnt happy with her liver. 2 weeks from now we will have labs taken again & will lay off the Methotrexate (which can play with the liver) until new labs come.

Ophthalmology appt as well - not so good. Right eye clear, left eye +1.

So I have letter off to Dr. Foster to get opinion: here's the letter:

Hello Dr. Foster, from the Pacific Northwest:
I wanted to give you the update on Charlotte & get your thoughts on the process of treatment. There has been a hiccup:

Charlotte
33 Months / Today’s Date: 6.27.08
Pausi JRA / Uveitis – Diagnosed in October 2007
Visited you in May 2008

Medications:
200 mg Remicade every 4 weeks
.4 ml Methotrexate SubQ weekly
Pred Forte topical / 3x a day / Dilating at night

Synopsis:

5.28.08 Opthalmology appt – both eyes clear. Tapered Pred forte from 4x a day to 3x a day. Dropped ointment @ night, keep dilating @ night.
6.15.08 Charlotte vomits / no fever / sleeps well
6.16.08 Charlotte runs a temperature, progressively gets higher as the day goes on. ER that evening - febrile seizure w/ 104.8 temp. Culture urine, blood, & spinal tap for meningitis. All negative.
6.17.08 Trip to pediatrician, still fever, recco is to stay on motrin every 6 hours
6.18.08 Vomiting, fever
6.19.08 Vomiting, no fever
6.20.08 no vomiting, no fever / Give Methotrexate
6.21.08 no vomiting, no fever
6.22.08 Vomiting comes back for one day / no fever
6.25.08 Pediatric Ophthalmologist: Right eye clear. Left eye 1+. Recco is to NOT taper Pred Forte, continuing taking 3x a day & see ped. ophthal. in 2 weeks
6.26.08 Remicade Day (4th injection). Converse w/ Dr. Daniel Kingsbury (Pediatric Rheumatologist) regarding results of labwork (please let me know if you would like these faxed to you):
SGPT / ALT 68 Normal Range 10-25 Units: U/1
SGOT / AST 45 Normal Range 20-60 Units: U/1
(also written on the prescription: ICD-9 7.4.32)
Dr. Kingsbury wants to hold off on MTX for 1 week, take labs again on 7.8.08 to see results before moving on with MTX that week.
7.08.08 Next ophthalmology appt / Take bloodwork to see if ALT is back in normal range.
7.25.08 Next Remicade appt (5th injection)

Moving Forward:
Dr. Kingsbury did not like the 1+ in the left eye & expects clear on 7.08.08.
If eyes are not clear, he recco’s going to 300mg of remicade every 4 weeks.
?: Is the virus to blame for her system being out of whack? No way to know or tell, just time will tell if she can get back on track.

Yes, it’s been a busy 2 weeks for Charlotte – hope this all makes sense! Please let me know if you want the labwork, if this is enough information & if you agree with the recco’s.

Thank you! Have a great weekend!
-------------------------------------
Less than 30 minutes later (He continues to lead my "heroes" list) Dr. Foster responds:

I agree with what has been done, and the plans for going forward, i.e., increase Remicade, hold the MTX. The MTX may have to be ditched if the liver continues to be unhappy. Can either go it alone with Remicade or substitute something for the MTX such as CellCept. Keep me posted.
-------------------------------------

If you have well children, go kiss them & appreciate their health! I will remind you of this again throughout the year!! :) Now I am off to make some new headbands - just got in 1/2" & 1" - loving the 1" :) More about my little side fun later (making bands for the cutey little girls in our town & giving proceeds to CARRA) :)

Tuesday, June 24, 2008

Tuesday's Game

  • 1. Pick up the nearest book.
  • 2. Open to page 123.
  • 3. Find the fifth sentence.
  • 4. Post the next three sentences.
  • 5. Tag five people, and acknowledge who tagged you.
What's Love Got To Do With It
Talking with Your Kids about Sex
by John Chirban, forward by Dr. Phil McGraw

(are they normal - ages 12-21) I have not read this far "ahead" because this does not apply to me yet :) and ya... typing this out is way over my head. I gotta grow with the girls & learn at the same pace w/ them :)
As love & sex may be confused in adolescent minds, clarifying different forms of love & helping your child understand the responsibilities & benefits of these different forms will be useful.
What can I expect of my adolescent?
Ages 12-14
- Is informed about sexual functions, sexual problems & the meanings of intimacy & love.
- Develops a healthy acceptance of his or her body.
- Overcomes guilt, shame & fears associated with sex.

So I got this book because it has helpful guidance to help me know when, how & how much @ each age. Obviously I wouldnt have read page 123 as it doesnt apply to my sitch of 7 & below, but I am being proactive, havent had too many questions about this stuff yet.

1st howl of the season

I just heard the first howl of the summer from the coyotes that like to peruse the farmers field behind our house. The farmer just cut down the grass (will bail in a week or two after it dries) & I imagine the coyotes are looking for freshly killed animals that got in the way of the tractor.

But the howl of the coyote is soooo freaky. Before our big yellow lab, Riley, passed in april'07, he would hear them before I would. And he would FUHREAK out! He would stand on alert, we would usually be upstairs in my office, where I can see the field from my windows & he would go to the windows with a BEGGING face, so I would open it up so he could hear them & he would go NUTS. I said, "dont even THINK about it! you think I would let you out there???? Are you nuts? They would tear you to shreds." (not really but Riley was really tough in the head, not in reality :), he was a lovuh, not a fighta!). But now when I listen to them by myself, I think "what about the new little puppy we are planning to get NEXT spring or summer? He will definitely not be allowed to just roam the backyard by himself that first summer.... its freaky to hear the summer cries of the coyote!

As for Charlotte - no puking, no fever, continues to complain that her tummy hurts and she is DEFINITELY not 100% herself IN THE LEAST. At her last ballet practice today, she got upset at "something", stopped in the middle of the room, bowed her head and started crying. She didnt move from that spot for the rest of the lesson. She was mad. She wants me to carry her, and I think her body is just ... wiped. She fell asleep in the car, got home & I put her down for another super long nap. Then she went to bed at 8pm without a problem. She complains that her toe hurts, her foot hurts, she doesnt want to walk up stairs.... We will see Kingsbury at the remicade on thursday, but honestly - she's on MAJOR DRUGS.... she should be invincible. So I am hoping its just the residual of this nasty virus that really took a toll on her teeny little bony body (aye, aye, aye, that's another thing, i am about ready to start her on some sort of body building protein drink.... the little chubster in pictures from January is no longer....).

Eye appt tomorrow to continue our taper of the pred forte & make sure that we are still under control w/ Remicade & Mtx. Remicade is on thursday.

Monday, June 23, 2008

June Shopping Finds

My shopping finds are starting to accumulate again, so its time to document in order to come back when needed :)

Cute reusable bags!
Vintage art for the kids! I am loving the ballerina clock for my prima's!
I love Mommy Cards! I dont just give them to new friends at the park, but they have been really great for doctors/nurses/dropping in the "win a free lunch" fish bowl @ the local eatery! I have a business too you know!! Their names are Emma, Ellie & Charlotte!
I grew up in the Iris capitol of the world & graduated with a Mr. Schreiner. His families business was a big part of our town. Now that my yard needs adornement, I would love to bring a little bit of "home" to my backyard. The colors to choose from are amazing, & I always gravitate to orange :)
I have been disappointed with the tv selection at the gym when I go & sometimes I am forced to go hit the treadmill at the gym rather than head outside (gym has childcare), so I think its time to start a new PLAYLIST. NYTimes has some great suggestions.
I fell in love with Jane Marvel bags for her cute little girl backpacks. Those are gone & while I am bummed, she has evolved to more city bags for the momma. These are tre cute... I am especially fond of the Jittney bag.
One of the best movies EVER for those of us that went to school in the 90's: Say Anything had the best line for seniors in HS in order to answer the question, "what do you want to do with your life?" - Now you can wear this on a shirt!
I don't want to sell anything, buy anything, or process anything as a career. I don't want to sell anything bought or processed; or buy anything sold or processed; or process anything sold, bought, or processed; or repair anything sold, bought, or processed. You know, as a career, I don't want to do that.

Flight of the Butterfly & Mouse

Pictures of the mouse & the butterfly from "Alice In Wonderland" Ballet. Just got these in today. Tomorrow (sans puke) will be Charlotte's last day in Kinderdance & so E&E will get to participate in the class tomorrow & are excited to do that with Charlotte. They even asked if they can wear these costumes! OF COURSE YOU CAN! Wear them till they fall to shreds :)

Holding my breath

Lots of whining & crying about our "tummy" this morning, but no puking.... Pediatrician said, "if fever: call me. otherwise, you might expect more puke..." he likes that she wants to eat, that just means theres a little something in her tummy that isnt allowing it, but everything else is good if she wants to eat & continues to eat, just "expect more...". GREAT :) but so far, nothing.

And I have Ellie & Charlotte playing Calico Critters & then they want to play ballet! Emma got a playdate today, lucky girl! Cuz then she goes to the dentist for him to see her big new teeth! :)

And I cant believe that Lance is coming to town on Sunday & the LIVESTRONG run is sunday - I havent ran in 2 weeks w/ all this NUTS around here... i better go do something so i can run 3 miles on Sunday :)

Sunday, June 22, 2008

not 100%

Thinking that I screamed loud enough, "NO MORE PUKING..." We thought it was done so we could leave her to go hit the fairways today. Ryan, me & my dad got the call on 18th green that Charlotte had thrown up again (the girls were with my mom). So we picked up the girls, took them home & Charlotte took an all afternoon nap & begged for food. Gave her apple juice & a banana & that came up an hour later.

The girls had waffles tonight. She screamed bloody murder for them, so WHATEVER... gave them to her.... put her in the bath where she was as happy as a clam... now she's in bed & I am waiting to see some waffles & syrup. i mean serioulsy... i give up?! She's starving, she wants to eat, but it just keeps coming back....

I will call the ped. tomorrow only because we are scheduled for remicade on thursday. where do we have to "be" to be able to get it ?!

Meanwhile, Ryan leaves tomorrow for a trip & says, "oh ya, i get to have dinner at the Biltmore on tuesday night... not sure what that is."
AH OOGA! WHAT?! The Biltmore is a 4-acre mansion built by Vanderbilt as a "get-away" retreat for him to relax & study art, music & horticulture!! It's insanely gorgeous in Asheville NC (Eastern side of NC, close to the Tennessee border, by the Great Smoky Mountains - so it looks just gorgeous there!). If you have time, look around on the website, it's amazing that a "castle" this magnificent (took 6 years to build) is in the US & so accessible. I would love to go back at Christmas time (uh-hem RYAN... i would LOVE to go back at christmas time!!!!).
Have a great time at dinner, my love (grrr...hiss....) :) Meanwhile.... I have puke to adore :) I think Summer MIGHT come!!!

Saturday, June 21, 2008

Ballet Recital









Summer's Here...

And the time is right - for dancing in the streets!

I know, I know, stop singing, the girls have already asked me to stop! :) But since the 120 hour flu has vacated the infirmary - I have cleaned, cleaned cleaned & feel GREAT & its time to enjoy summer!

Charlotte finally stopped the puking on Thursday, she woke up Friday & wanted to EAT! I was cautious... but so happy to see her start feeling a bit better. She's EXHAUSTED... she went to the ballet recital last night for the E's - and it went LATE... I thought she might not be able to attend, but we gave it a shot. It was a very warm auditorium, and I eyed the place for my get away plan in case I felt jolts in the body (which at one point I thought I did, but I know I must of been making it up). We kept fanning her - and kept telling that in every group there was "Emma" or "there's Ellie" to keep her attention (oops... :) tee hee hee). For Emma's last day of school celebration - they both received mermaid tails for the pool. But they are just fine laying around Daddy's office & pretending in them!
They would hold up the boxes & talk outloud of where they were swimming - imagining themselves in the ocean water that they were looking at. IT WAS HILLARIOUS!

Summer is here - its officially golf & swim (mermaid) season!
PUKE BE GONE! No more 120 hour flu! no more ER visits!! NO MORE seizures!
LORD HEAR MY PRAYER :) :) :)

My Favorite Eugene Golfer

Our family friend Cole, is getting his golf game ready for special olympics in Portland! We are so so proud of him & can't wait to see him soon! He made the local news & his smile is the BEST! I need to remember to smile that much out on the course :)


Cole golfs @ RiverRidge in Eugene, & if you get a chance, its a gorgeous course with an even more gorgeous & wonderful pro who runs it - Ric Jeffries is one of those sweet & caring souls who gives to the community over & over! We were in Eugene in the "B-4 Charlotte" years & we had date nights w/ Ric, who would give us couples lessons & sometimes his wife would come out there & laugh & talk w/ us as well. Just a wonderful family! Beautiful course on N.Delta Hwy, in Sheldon country, just in town! Recommended for the whole family!!!

Tuesday, June 17, 2008

Not a Fluke

After Charlotte's random dinner time park puke, we went home, washed up & went to bed.

She woke up the next morning w/ a fever & laid on the couch the entire day. We gave her fluids, but she didnt pee all day. I called the pediatrician & they said watch the fever, listen to your gut.

At 730, she seemed extra hot, my gut said head to the ER. We joined MANY others who needed help on a full moon evening.

We were getting checked in by a nurse when I said, "see this twitching? she did this in the waiting room 3x, as she fell asleep."

The nurse was silent as she watched Charlotte's eyes & I started to watch the nurse alarmed. Charlotte started to twitch more, then she went into a full on seizure.

DEFINITION: Febrile Seizure
Febrile seizures are convulsions brought on by a fever in infants or small children. During a febrile seizure, a child often loses consciousness and shakes, moving limbs on both sides of the body. Most febrile seizures last a minute or two (ours did).

Nothing gets you a room in the ER like having a seizure. I held her & they led me to a room where the nurses were on her like bees on flowers, & put the oxygen mask & moved me aside. They suctioned her mouth & started taking vitals.

She came too, after a few minutes.

While she was coming back (but wasnt herself at all - she was spacey, staring at the lights in the ceiling), they took blood, they took urine & temp. When she had the seizure she was at 104.8.

The ER doc didnt like it. He didnt like her cold feet, the fast temperature rise, the febrile seizure and bottom line "who Charlotte is" (meaning history & the big drugs she is on: Methotrexate .4ml sub-q weekly, Remicade IV every 4 weeks).

He decided a spinal tap was in order, he was looking for meningitus:
DEFINITION: Meningitis is an inflammation of the meninges, the membranes that cover the brain and spinal cord. It is usually caused by bacteria or viruses, but it can also be caused by certain medications or illnesses. Bacterial meningitis is rare, but is usually serious and can be life-threatening if it's not treated right away. Viral meningitis (also called aseptic meningitis) is relatively common and far less serious. It often remains undiagnosed because its symptoms can be similar to those of the common flu.

We tried to see if Charlotte would allow them to do it without sedation, but she was too aware & is too much of a little fighter. They needed to knock her out. They used: Ketamine which was put right into her IV & she closed her eyes immediately.

While we were waiting for the results of the spinal tap, they gave her a big dose of anti-biotics, just in case.

45 minutes later - it came back negative. We were free to go. Whew....

So... today at the pediatricians, he set my expectations that the fever could ebb & flow & with that, she possibly could have another seizure. So we are on Motrin & watching her super closely & trying to get her to drink liquids (harder than it sounds). At least she is a different girl today than yesterday, she is at least vocalizing her pain today (be careful what you wish for). her temp is down to 100.3, still a fever but no 104.8, whew.

We are treating this as a virus as the blood & spinal fluid continue to culture. If she still has a fever by Thursday (today is Tuesday), then we need to have her checked out again.

We welcomed Daddy home who enjoyed watching the US OPEN but was pretty distraught at the phone calls last night when he was stuck in SD & couldnt get out in anyway before this AM. I got Emma off (late!!!!) to celebrate w/ friends & teachers the last day of school, last day of 1st grade & since she is her Marmee's granddaughter, she cried :) We are going to celebrate her tonight at dinner. We are going to watch Charlotte closely & realize that we dont mess around w/ fevers for her, she might be prone to this in the future.

Muchas Gracias
Addison's mom, thanks for the push to call the pediatrician, smart call when I sometimes wonder what to think.
Cousin Laura, thanks for being a part of this adventure this week. Not what you expected on your time off from college, no shopping was done :( but you sure learned a lot about pediatric meds! Want to change your major?! :)
Cindy, FG #1, oh my... How do I say thank you in every language for dropping everything & racing to the ER to be with us, to be that 2nd set of ears, to talk & relieve the stress, to laugh & share. THANK YOU. I love you!
Mom, thank you for being available to the E's for bedtime & sit & be the caller go between for Ryan/us. What a late night.... Love you!

Sunday, June 15, 2008

It's recital season!

This is our last week of school AND its recital season for all 3 girls in ballet. WHAT A WEEK... oye oye oye! This was practice (then they had a run through this weekend, next week is dress rehearsal, etc etc! I cant wait for all 3 girls to be at the same place practicing ballet - next year!!!). This will be a beautiful ballet - its Alice in Wonderland. Emma is a butterfly, Ellie is a mouse.

video

And while Daddy is at the US OPEN watching TIGER & ROCCO face off tomorrow for the title, Cousin Laura & I took the girls to the park tonight to meet their friends Georgia & Jack.... and Charlotte puked all over in the bark chips....

So she has me a little freaked out... and she hasn't had any tomatoes although she's been eating a lot of fresh fruit & raw veggies, but... so have I ... so I am hoping it was just a fluke thing today with something not sitting just right...

Friday, June 13, 2008

CARRA & Arthritis Foundation working together!

This is wonderful news - CARRA & Arthritis Foundation are working together in order to keep a record/listing of all the children like Charlotte on TNF inhibitors so they can monitor them. YAY!!!!!!

Arthritis Foundation Comment On Food And Drug Administration Ongoing SafetyReview Of Tumor Necrosis Factor (TNF) Blockers

10 Jun 2008


The Food and Drug Administration (FDA) issued an early communication on June4, 2008 regarding an ongoing safety review of Tumor Necrosis Factor (TNF)Blockers (marketed as Remicade, Enbrel, Humira, and Cimzia) and the possibleassociation between the use of these medicines and the development oflymphoma and other cancers in children and young adults.


The FDA is investigating approximately 30 reports of cancer in children andyoung adults who were treated with TNF blockers for Juvenile Idiopathic Arthritis (JIA), Crohn's disease or other diseases.

JIA is the new name forwhat was called Juvenile Rheumatoid Arthritis (JRA). These reports were submitted to FDA's Adverse Event Reporting System over a ten-year interval,beginning in 1998 after approval of the first TNF blocker, and extendingthrough April 29, 2008.


The Arthritis Foundation supports the Food and Drug Administration's furtherstudy into the risk of cancer conferred by treating JIA with TNF blockertherapy. At this time, the increased risk of cancer does not seem to belarge especially when compared to the risk of disability from untreatedjuvenile arthritis.


The Arthritis Foundation recommends that adult patients and parents ofchildren being treated with TNF blockers work closely with their physicians to understand the risks and benefits clearly. The concern over increased risk of adverse side effects of these powerful drugs emphasizes the need fora national registry for patients with JIA and a network of collaborating treatment centers so that full information can be acquired about the risks and benefits of the new treatments that are becoming available.


The Arthritis Foundation is working toward this goal through its support forthe Childhood Arthritis & Rheumatology Research Alliance (CARRA). CARRA is aNorth American organization of pediatric rheumatologists who have joined together to answer critical clinical research questions and determine thebest possible treatment options for childhood arthritis and other childhoodrheumatic diseases.


The Arthritis Foundationhttp://www.arthritis.org/

Sunday, June 8, 2008

What a beautiful sight!

Thank you Jeremy, Amy, Presley, John, Cheryl, Olivia, Savannah, Brad, Dana, Blake, Nathan, Katrina, Tanner, Ryan, Tatum, Amelia, Kim, Kendra, Kendra's Soccer team & their parents, Coach John & Kay, Greg, Lori, Wyatt & Nolan! Your love & support for Charlotte & our family is SO humbly appreciated! THANK YOU!! LOVE YOU FRIENDS!!! Thank you! Todays Race for CARRA was a beautiful community & family event. We walked along Portland's Eastside Esplanade which is on the Willamette River. It's Portland Rose Festival time, so the big ships are docked on the "waterfront", there were dragon boat races happening & the sun was shining. It was a beautiful, supportive, happy time for families to walk & run with their children, for friends to catch up & laugh, & to share Charlotte & her story.
There is such a supportive family within the group NW JRA children & their parents, that I was happy to catch up with those new friends as well & what made my day was to hear about Bella, the grand marshall & her progress as she just started taking a daily shot of Kineret (a TNF blocker like Charlotte's remicade).


Its been a miracle drug for Bella who is systemic (see older posts for Bella's story) & for her mom to tell me how Bella's now able to ride a bike, go out & play & isnt as tired anymore (arthritis wipes your bodies energy!), was SOOOO WONDERFUL to hear. Bella's mom's face LIT up telling me & I was sooooo happy for her! I snapped pictures of Bella, who was just the most proud girl walking today & it makes you SOOO happy to see the LIFE restored to young little bodies & spirits.

Our sweet friends John & Kay, brought their soccer team that they coach. They all wore their jerseys & they were huddled in a circle before the start of the race getting a pep talk from their coach. I took Charlotte over to thank them & Kay introduced us, "And this is Charlotte, this is the little girl you are running for today."

Strangers. Children & their parents. And they are running for Charlotte.

I wanted to thank them, & share with them why they have touched me & my family. I wanted to tell them a little bit about Charlotte so they could understand WHY their support is such a big deal.

But being my mother's daughter, I could only get out "Thank you so much!" And then I probably scared them because I took Charlotte's leg & showed them her bending it at the knee & said, "she used to not be able to do that. She's now on two medicines that help. ....(choke...) Thank you!"

I sent Kay & Coach John the following email to share with their team, this is what I REALLY wanted to say:

Dear Coach John’s Soccer girls & families,

Thank you so much for coming out today & walking & running to support children that have Arthritis!! I was so moved by your being there, I wanted to share more with you about Charlotte & why you touched my heart, but my words got choked up in emotion. I am so appreciative for your support & your generosity to your community. You are not only athletes, you are tremendous community leaders!

There are 300,000 children in the United States with arthritis - some of them can’t play soccer & can’t run or walk the 3 miles you did today. Your support today will go to studies so that Charlotte can live a happy, active life as she gets older!
Charlotte is 2 ½ & last fall, just as Charlotte turned two, she started limping. We though she might have twisted her knee or ankle. Then one morning, her knee got very swollen & huge & she cried if you didn’t carry her, she couldn’t stand on her legs & she didn’t want to walk at all. That’s when we found out she has Juvenile Rheumatoid Arthritis which is an autoimmune disease.

For Charlotte, her arthritis has also gone to her eyes (called uveitis). This doesn’t happen to all children who have arthritis, so there isn’t A LOT of information out there on what to do about it. We took her to see a special eye dr. in Boston to make sure that we are taking the right medicines in order to help her eyes get under “control” & not cause any damage to her eyes so she can see clearly now & forever.

To keep Charlotte healthy, she gets a weekly shot (given by her mom & dad) & monthly she goes to the hospital to have an IV & she hangs out there for a whole day as the medicine drips in through a needle in her arm. She will do this for 2 more years just to get rid of the arthritis in her eyes.

Your running today holds a soft spot in my heart because they are doing more & more studies & work on children with arthritis in the eyes (uveitis) so that children do not suffer from this in the future. Thank you again! I am humbly grateful for your caring & your support! Good luck to your team & your season! HAVE FUN!

Erika & Charlotte (“Tottie”)

Thursday, June 5, 2008

Computer Fun for the Kiddo's

Here's a gathered LIST of all the COOL websites that kids can play around with this summer! There's more to the computer than WEBKINZ little people :)

Emma & her friends - YEE HAW Cowgirls!

The other alternative isnt an option...

I posted the FDA report - now this is the NYTimes article the next day re: the study. We know these risks, its put into the back corner of our thinking because that's the worse case scenario. You know what the worse case scenario of uveitis is if NOT treated? Its in the eyes... you know & I dont want to type the word, cuz I dont want to put that vibration out there. But you know... that's what we had to weigh in our decision. THIS or.. possibly this. No, correction: it wasnt "possibly this" it was THIS or CURE!? Let's go for the cure! And I dont use that word lightly, its the word that Dr. Foster used, and its why he has us on this TNF inhibitor for 2 years: Remicade. Remicade WITH Methotrexate, he has the data to say, together they cure. So you go for it... and then you read findings like below & sigh & go "Yep.... well.....we know.... the other alternative just isnt an option."
-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-
NYTimes
June 5, 2008

F.D.A. Reviews Arthritis Drugs for Links to Cancer

The Food and Drug Administration said Wednesday that it was investigating whether four drugs used to treat rheumatoid arthritis and other immune system diseases might increase the risk of cancer in children.

The F.D.A. said that it had received reports of 30 cases of cancer over 10 years among children and young adults treated with those drugs, which are sold by Amgen, Abbott Laboratories and other companies.

But the agency did not make clear how many children had taken the drugs or whether the cancer incidence among them was higher than would be expected. And it said that for now, it believed that the potential benefits of the medicines outweighed the potential risks “in certain children and young adults.”

The drugs involved are Enbrel, sold by Amgen and Wyeth; Remicade, sold by Johnson & Johnson and, in Europe, by Schering-Plough; Humira, sold by Abbott Laboratories; and Cimzia, which won approval in April and is sold by UBC, a Belgian company.

All the drugs try to damp inflammation by blocking a protein called tumor necrosis factor, and they are used to treat various immune diseases including rheumatoid arthritis, psoriasis and Crohn’s disease, which is an inflammation of the bowel.

The TNF-blockers, as they are known, represent one of the most successful classes of drugs ever developed using biotechnology. Remicade, Humira and Enbrel had combined sales of more than $13 billion last year.

But use in children constitutes a small part of the total. Dr. Michael Severino, an Amgen executive, said about a half-million patients had been treated with Enbrel since its approval about a decade ago, of which only 12,000 were children.

Remicade is approved to treat Crohn’s disease in children. Enbrel and Humira are approved to treat juvenile idiopathic arthritis, once known as juvenile rheumatoid arthritis. In fact the label on Enbrel was changed in March to allow use in children as young as 2, from a previous suggested lower age of 4.

Amgen is now seeking approval of Enbrel to treat psoriasis in children, an issue that will be discussed by an advisory panel to the F.D.A. on June 18.

Since the drugs block part of the immune system, it has always been known that they might contribute to higher risk of cancers and also infections. The labels for the drugs all contain warnings to that effect — particularly about the risk of lymphomas, which are cancers of immune system cells.

About half the cancers reported in the children getting the drugs were lymphomas, including Hodgkin’s disease and non-Hodgkin’s lymphoma, the F.D.A. said.

A study that pooled data from randomized clinical trials, found that adults given Humira or Remicade to treat rheumatoid arthritis had 2.4 times the cancer rate of those in the control groups. “It’s clearly something we have to be concerned about and discuss with our patients,” said Dr. Eric L. Matteson, chairman of rheumatology at the Mayo Clinic and an author of the study, which was published in The Journal of the American Medical Association. Dr. Matteson has been a consultant to many of the companies developing such drugs.

Dr. Edward H. Giannini, professor of pediatric rheumatology at the University of Cincinnati, said that 70,000 to 100,000 children in the United States had juvenile idiopathic arthritis, and that the biotech drugs were “unequaled” in their ability to control the disease. “This was a disease that put kids in wheelchairs,” he said.

Dr. Giannini, who received consulting fees from the companies for helping to devise their pediatric clinical trials, said that no cases of cancer were seen in the clinical trials that led to Enbrel’s approval for pediatric use. And a subsequent registry that followed 600 children found no cases after more than 800 patient-years of exposure.

Still, he said, “We have to be careful with the safety aspects of giving immune response modifiers to very young children,” whose immune systems might not be mature yet.

Michael Parks, a spokesman for Johnson & Johnson, said the company had already submitted data to the F.D.A. Most of the cancer cases associated with Remicade use were in children with Crohn’s disease or ulcerative colitis. And all but one of those children also received other immune-suppressing drugs with a known cancer risk, he said.

Laureen Cassidy, a spokeswoman for Abbott, said there had been no instances of cancer in children given Humira in clinical trials or in postapproval safety studies. Humira was approved for pediatric use a few months ago.

The F.D.A. announcement had little impact on the stocks of the companies involved.

Wednesday, June 4, 2008

Early Communication About an Ongoing Safety Review of TNF Blockers (marketed as Remicade, Enbrel, Humira & Cimzia

Charlotte's medication that she has the IV infusion 1x a month at the hospital is REMICADE:

Early Communication About an Ongoing Safety Review of Tumor Necrosis Factor (TNF) Blockers (marketed as Remicade, Enbrel, Humira, and Cimzia)

http://www.fda.gov/cder/drug/early_comm/TNF_blockers.htm

FDA is investigating the possible association between the use of medicines known as tumor necrosis factor (TNF) blockers and the development of lymphoma and other cancers in children and young adults. These individuals were treated with TNF blockers for Juvenile Idiopathic Arthritis (JIA), Crohn’s disease or other diseases. JIA is the new name for what was called Juvenile Rheumatoid Arthritis (JRA).

FDA is investigating approximately 30 reports of cancer in children and young adults. These reports were submitted to FDA’s Adverse Event Reporting System over a ten-year interval, beginning in 1998 after approval of the first TNF blocker, and extending through April 29, 2008. These reports described cancer occurring in children and young adults who began taking TNF blockers (along with other immuno-suppressive medicines such as methotrexate, azathioprine or 6-mercaptopurine), when they were ages 18 or less, to treat Juvenile Idiopathic Arthritis (JIA), Crohn’s disease or other diseases. Approximately half the cancers were lymphomas and included both Hodgkin’s and non-Hodgkin’s lymphoma. Lymphoma is a cancer of the cells in the immune system. Lymphoma is not a recognized complication of JIA or of Crohn’s disease. Other cancers reported included leukemia, melanoma, and solid organ cancers. While cancers are known to occur in children and young adults, the reports of these events in children and young adults receiving TNF blockers are of concern and deserve further investigation. Long-term studies are necessary to provide definitive answers about whether TNF blockers increase the occurrence of cancers in children because cancers may take a long time to develop and may not be detected in short-term studies.

TNF blockers suppress the immune system by blocking the activity of TNF, a substance in the body that can cause inflammation and lead to immune system-related diseases. There are currently four TNF blockers available in the United States. Remicade, Enbrel, Humira, and Cimzia are each approved to treat one or more of a number of immune system diseases including JIA, rheumatoid arthritis, psoriatic arthritis, plaque psoriasis, Crohn’s disease, and ankylosing spondylitis. Remicade is approved for use in children to treat Crohn’s disease. Enbrel and Humira are approved for use in children to treat JIA.

FDA has been aware of the possible association between the use of TNF blockers and the development of cancer. The prescribing information for all four TNF blockers warns about the possible risk of cancer. FDA is also aware of the risk of hepatosplenic T cell lymphoma in children and young adults with Crohn’s disease treated with Remicade and immunosuppressive drugs such as azathioprine or 6-mercaptopurine. This risk was described in the Remicade prescribing information in 2006.

FDA has asked the makers of the TNF blockers approved for use in children (Remicade, Enbrel, and Humira) to provide information about all cases of cancer reported in children taking TNF blockers. The maker of Cimzia is required to conduct a study to assess long-term risks of the product, including lymphoma and other cancers. This study will begin in 2009 and take about 10 years to complete. FDA has contacted medical experts to assess the potential association between TNF blockers and cancers, including lymphoma, and to determine if there are children and young adults with JIA and Crohn’s disease who may be at particular risk for developing a lymphoma or other cancer.

This early communication is in keeping with FDA’s commitment to inform the public about its ongoing safety reviews of drugs. FDA will communicate the conclusions and any resulting recommendations to the public after it completes its evaluation of the new information within about six months. At the current time, the FDA believes that the potential benefits of the use of TNF blockers outweigh the potential risks in certain children and young adults having one of the diseases for which the TNF blockers are approved to treat. Until the evaluation is completed, healthcare providers, parents, and caregivers should be aware of the possible risk of lymphoma and other cancers in children and young adults when deciding how to best treat these patients.
The FDA urges both healthcare professionals and patients to report side effects from the use of Remicade, Enbrel, Humira, and Cimzia, to the FDA's MedWatch Adverse Event Reporting program.

by reporting online at www.fda.gov/medwatch/report.htm;

by returning the postage-paid FDA form 3500 available in PDF format at www.fda.gov/medwatch/getforms.htm to 5600 Fishers Lane, Rockville, MD 20852-9787;
by faxing the form to 1-800-FDA-0178; or by phone at 1-800-332-1088.

Date created: June 4, 2008

Tuesday, June 3, 2008

Pumpkin's a vegetable, right?

My eldest daughter, the sweet girl that she is, has very peculiar taste buds. She wont touch a hot dog, or any meat for that matter. Peanut butter & jelly, forget it.

But Gustav's swiss cheese & white wine fondue!? By the bucket!
And pumpkin - anything pumpkin! Pumpkin pancakes, pumpkin cheesecake, pumpkin pie of course!

So when at New Seasons today I saw this: Pumpkin Butter! Can I tell you that when I showed it to her today, she about thought she'd gone to heaven?! "Can I have some toast? Can I just put a spoon in it?" Ta, ta, ta, I am waiting till i buy bagels (tomorrow) :) You musnt spoil the pumpkin butter before its time.

I am just hoping that its qualifying for a vegetable. A little sugar never hurt anyone right? Made in Hood River, OR (home to many apple & pear trees & the gorge & windsurfing):

Pumpkin Butter - Earthy Northwest grown pumpkins and the sweet spices of cinnamon, clove, and cardamom give this classic its irresistible flavor.

Now my new find today that IS totally legit - is the Clif Kid Twisted Fruit - better than the fruit leather I buy / each "twisted fruit" is = to one fruit serving. THESE TASTE LIKE CANDY! And here's the ingredients: Organic Apple Puree, Organic Apple Juice Concentrate, Malic Acid, Organic Flavors, Pectin, Colored With Fruit And Vegetable Juice. I just bought a box of 18 online (make that two because 5 of these were eaten tonight & I just put another one in her lunchbox for tomorrow). I am HIGHLY recommending - I will be chowin' on these!!!! So yummmm!

Monday, June 2, 2008

Angels Among Us

Our Friends @ Metro Parent Magazine did an amazing full page article on the RACE FOR CARRA. Sometimes when you read stories of children & their trauma & suffering & it seems distant. But the fact is, I know these girls they are speaking of & this is why we walk, to find a cure for them, for Charlotte & for all the families that have been touched by this disease. I cant even imagine being in their shoes: thyy face every day & they try hard to do their best & be "normal kids" even when it hurts & that's why they are....

angels among us
34 Metro Parent • www.metro-parent.com • June 2008

There are over 300,000 children in the US suffering from juvenile arthritis and other rheumatic diseases. These diseases attack children’s joints, muscles, skin and internal organs. These youngsters live in chronic pain and take harsh medications in the hope of controlling their symptoms.

Imagine sitting in class all day as arthritis causes your body to stiffen and swell; attempting to write and complete schoolwork as your wrists and fingers can barely grip your pencil; watching your friends and classmates run and play while you sit, watch and wish that you could remember what it’s like to live without pain. By the time you get home from school, all that your 6-year-old body can find the energy to do is take a nap. Then you eat dinner, take your medicine and go back to bed, only to wake up the next day to start all over again.

Imagine watching as your 3-year-old daughter’s body makes a devastating transformation. Her once strong and active body can no longer walk across the room, climb up the stairs, or get into her own bed. She is withering away day by day, until she is just a shell of herself. Climbing into the bathtub is impossible and sitting on the floor is excruciating; you carry her everywhere. After many doctor appointments and tests you get her diagnosis and learn that she is one of only 5,000 kids in the entire United States that is suffering from Juvenile Dermatomyositis.

These are just two-real life examples of the devastating effects rheumatic diseases have had on local children and their families. Parents of kids suffering from rheumatic diseases feel helpless. We take our kids to the doctor, give them their medications, help them do their exercises, try to answer their difficult questions and love them through it all, but we can’t take their suffering away. We do our best to encourage them to have a “normal” childhood, but their diseases often make this difficult.

Friends of CARRA & CARRA
Our hope lies in the research being done by the Childhood Arthritis & Rheumatology Research Alliance (CARRA). CARRA is made up of 246 pediatric rheumatologists from across the U.S. and Canada. CARRA research is focused on six disease categories: Juvenile Arthritis, Lupus, Dermatomyositis, Scleroderma, Vasculitis and Pain & Health Related Quality of Life. They have come together to collaborate and conduct high quality clinical research to find the answers to many questions: What is the cause? What are the best treatments? What are the long term outcomes? What is the cure? CARRA doctors are working together to find the answers, but funding the research is the biggest obstacle.


Friends of CARRA is a national nonprofit, fundraising organization established by a group of parents in 2005, to support CARRA’s research efforts. Friends of CARRA raises money through private donations, grants and various fundraisers put on by parents and friends across the country. The group has no paid employees. This helps to ensure that all the money raised, goes
toward our mission: to support the discovery of a cure and improved treatments for childhood arthritis and related diseases and to increase public awareness of childhood rheumatic conditions. Visit http://www.carragroup.org/ for more information.


Friends of CARRA - Helping Find a Cure for Childhood Rheumatic Conditions
Race for CARRA
On Sunday, June 8, the Third Annual Race for CARRA will take place along the Eastbank Esplanade and around the Oregon Convention Center in Portland. It is a 5k run/walk for the
entire family. Visit http://www.raceforcarra.com/ for information and to register.
Details about CARRA can be found at http://www.carragroup.org/.

Sunday, June 1, 2008

CARRA Hayhurst Triathlon

Here are some pictures from this weekend's Hayhurst Kids Triathlon benefitting CARRA. It was an AWESOME event. I cant speak highly ENOUGH about it. What a tremendous activity Mr. Hayhurst has put on for families! It was encouraging, supportive, FUN & for a GREAT cause = funding research to find the cause & cure childhood arthritis.

Here are some pictures of Emma & Ellie with our friends Olivia & Savannah who joined us for the fun event! FG#2 was there as well, & she ran Ellie in.... such a village! We always enjoy seeing her sweet girls, our twins separated by towns & parents; Emma & Ellie!

Join us next year! Its a BLAST!

Click to play CARRA Hayhurst Triathlon
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