JIA Update

Last we checked in with Siobhan and her friend JIA, she was in remission with medication. Back in August, the methotrexate, that she gets by shot, was causing come damage to her liver so the Doctor had us take her off the meds completely!! That was happy! So we began life with no medication at all and just managing her Arthritis with a gluten free diet and lots of positive vibes.

Siobhan had her regular check up with Dr. Inman on November 15 and was declared in full clinical remission with no meds! That's huge and exciting!

Then her birthday and Thanksgiving hit. I don't know if it's related or not, but we let her have regular gluten filled cake for her birthday and a Thanksgiving dinner that was bursting with gluten (gasp!! Mother of the year!). The Saturday after Thanksgiving, Siobhan came up in the morning with a very swollen, painful and stiff right knee. :( Such a bummer!!! Back on meds. Not the methotraxate but a daily anti-inflammatory called meloxicam. Through discussion with her pediatrician (who Siobhan coincidentally had a well check with) and emails with D. Inman the decision was made to go for several weeks on the meloxicam and see where that got us.

By Monday of this week there was no improvement! So six weeks of pain, stiffness and swelling....great. So we got into see Dr. Inman yesterday and we were told that we basically had two options. 1) back on weekly methotrexate injections which could possibly not work (at least not very quickley) and damage her liver again. And by the way, do you like getting shots once a week??? 2) Go for the big time and do the joint injection which she's had once before in August 2011. You can read about it here and here. Through discussion with the Dr. and Siobhan, we decided to go with option 2. It's a more drastic option but I don't want to spend months and months giving her shots every week and then end up doing the injection anyway-who wants that?? So on Monday Jan 14th, we will head up Primary Children's Hospital for another round of injections in her right knee.

Oddly enough, her right knee has never been the one we were worried about. Her left knee was the one that first clued us into the fact that something might be wrong back in 2011 and by all accounts, her right knee was never as bad as the left. She didn't even need the injection in her right knee the first time around. That's all changed now. Oh well. Siobhan is very happy though that she gets to take two days off of school and that she'll be asleep through the whole thing. The little things, right?

Heading to Washington DC

Last Saturday Morning (April 14th, 1 am) Siobhan and I headed out to the big city! Washington DC that is! :) Siobhan and I-well mostly Siobhan-were chosen to represent Utah at the Arthritis Advocacy Summit. While there, were tasked with talking with Congressmen and Senators about various legislation that is relevant to Arthritis Patients. I'll get more into that later. But for now here is the first part of the trip!

This is Siobhan and I on the airplane leaving SLC. Our flight left at 1 am and headed for Atlanta for out lay over. Siobhan decided that she was going to be brave and not be scared when the plane took off. Also, the tooth fairy payed us a visit while we were on the plane! Siobhan lost a tooth on Friday afternoon so the tooth fairy had to come while we were flying! It was great incentive to get Siobhan to sleep. Right before we took off, I was so tired, so I told Siobhan, 'I don't care what you do as long as you're quiet and stay in you seat, but I'm going to sleep. Before I knew it, she was sleep on my shoulder!

After our layover in Atlanta, which was not very long, we hopped on the plane for the final leg of the journey. She was so excited to have a window seat! And boy was this girl tired! After sleeping for two hours before we took off for the first flight, sleeping through the entire first flight, I wasn't sure she was going to sleep on this flight. But boy, that girl was sleep with her head in my lap before we even took off!



Once we got into Reagan, we were HUNGRY! Good thing there was a McDonalds right at our gate! so we stopped for a quick breakfast before we got our baggage. You can tell from the picture that Siobhan was very excited! I hear that Uncle Joe gets a similar look on his face when he gets his McDonalds breakfast! LOL!

We were worried that since we got in so early, like 9 am, there would be no rooms ready at our hotel. So we planned that we would check the suitcase with the bell hop and go do some sight seeing. But we were lucky because our room was ready to go as soon as we got there! So we got all checked in and changed clothes and headed out get me a swimsuit. I found the nearest Target but we walked for an hour before we found it. My navigation skills are completely lost outside of Utah.

We finally made our way to a mall in Pentagon City and found me a swimsuit. We made our way back to Arlington for some fun in the pool. After an afternoon of swimming, we decided to head down town to DC for some dinner. We hopped on the metro train and headed to the Hard Rock Cafe. After some walking around, attempting to navigate the city, a small brush with the white house and making our way through the crowd at the Cherry Festival, we finally found the HRC! And there was a 45 minute wait. So we put our name in and went to go buy some souvenirs. Got into dinner where Siobhan promptly fell asleep! Who falls asleep at the Hard Rock! Such a cutie!!! On the train ride home, we both fell asleep. Thank goodness we (I) woke up before our stop! The great part was that our stop was right under our hotel! How cool is that? The subway system in DC is awesome! Needless to say, we were exhausted when we got into bed! The next day we planned our sight seeing adventures....

 To Be Continued!

The Good Times Keep On Coming....

It's been a long time since I've posted here, but I'm going to re-double my efforts on the all of the blogs that I author or contribute to. I make myself sound so important, but really, I'm not. Anyway, we've had some fun things happen for us and our family, most especially Siobhan, in the arthritis world and I wanted to share them. So here it goes....

1. The Jingle Bell Run/Walk was awesome! We were the top fundraising team and I think that we ended up with right around $1000. We had a great time at the event. I will do an entire post about it soon including pics and video.

2. Siobhan and I were chosen to go to Washington DC to represent our congressional district at the 2012 Congressional Arthritis Summit! We are so so so excited! But we haven't told her yet, we have something fun planned to tell her the news. While we are there, we will get to meet with our congressman and possibly our senator where Siobhan will tell them her story about suffering from arthritis. We hope that while we are there, the lawmakers in our country will take notice of the effects of arthritis on so many people in America, especially the 300,000 children who have it. We will attend trainings and seminars and learn about all the ways that we help bring a little bit of change. (ew, I sound a little like a politician) We're going to be doing some sight seeing as well, so that's going to be awesome! And the trip is paid for by the congressman's office so that's pretty cool! The summit is April 16-18.

3. Every spring the Arthritis Foundation holds a black tie gala to honor people in the community who have made big contributions to the cause of arthritis treatment and prevention. These people may suffer from arthritis or not, they may serve on boards, write fat checks or just do an exceptional amount of work with the foundation. Well, at this gala, every year, they pick a child with JA to decorate a plate and then present that plate to the honoree. Well, this year, they are honoring two people and Siobhan was one of the children chosen to make a plate! So lat Friday, we went to Color Me Mine and Siobhan made an awesome platter for one the honorees. It was great fun. Siobhan and I will attend the gala in April. So exciting! I can't wait for her to have the experience and to get her an awesome fancy dress!!! And it's all happening right before the summit!!!

4. Siobhan is officially on the planning committee for the upcoming Arthritis Walk in May. We're having fun going to all the meetings and sharing ideas for how we can make the event an even bigger success!

5. I was asked to help create a pilot program through the Utah branch of the Arthritis Foundation. The program is a parent/peer/family support group for families with kids who suffer from JA. Right now we're in the planning and initiating stages getting ready for a
'launch' at the walk on May 5th. I'm in charge of setting up a blog, we're going to have a facebook page, organize activities, craft nights, Q&As, all kinds of fun things. One of the hardest parts for me as a parent when Siobhan was diagnosed was not knowing anyone who really knew what we were going through. So this is our way of filling that need. I'm working with a staff member at the foundation along with another parent and her teenage daughter. So far, it's coming together really nicely!

In other news, there has been a significant set back in the arthritis community in the last few months. Oddly enough, this actually coincides with a setback in the cancer community as well. You may have heard about it in regards to various forms of cancer, but it effects the arthritis community as well. One of the most widely used medications for those with Arthritis is a drug called methotrexate. Siobhan is on this med and gets it via a shot once a week. We credit this drug with helping her go into remission and keep her that way. This drug is also used (in much higher doses) as a life saving treatment for children with Leukemia. Well, there is now a nation wide shortage of this drug and it's causing a lot of worry. While I understand that with Siobhan, not having a the drug will not cause her lose her life. But it could mean her having so much pain that things like walking, running, even sleeping could become extremely difficult, maybe even impossible. There are other drugs out there for her (even other forms of this med) but the results are no where near as good and the side effects, in some cases, are much worse. But that is where we are blessed, even though the alternatives are not as good, at least we have them. Unfortunately, it seems that Cancer community really does not have any alternatives. For more info on how this shortage pertains to arthritis patients read this. I hope and pray that the shortage can be overcome quickly to minimize the suffering of so many people who rely on this medication. I hope you'll do the same!

Jingling and Doctors...

First things first, so many people donated to our team and supported Siobhan for the Arthritis run and we could not be more grateful! It was amazing and gratifying to have so many people show Siobhan so much love! You all rock! Now, I've had a few people ask me if they can still donate and the answer is yes! The fundraising page is going to be open until Dec 31 so you can make your end of the year donations. Here is a link to Siobhan's page where you can go and donate if you want to.

Now, on to other important stuff. We have an appointment on Thursday (tomorrow, today, all depends on when you read this) with Dr. I and I can't help but be a little nervous. Since Siobhan's diagnosis, we haven't gone more than 6 weeks between visits and this go around it's been 3 months.

A lot can happen in that amount of time and a lot has happened. It's winter which means the barometer is low (or is it high-either way, up or down, it can be trouble for arthritis), Siobhan started basketball and she's been sick a few times. I'll be interested to see how that all effects the JIA. But I'm going to be optimistic and pray that she's still in remission. That would be a great Christmas present!

I hope all is well in your life!

So Long, and Here Comes The Winter...

This is going to be a quick post, but I wanted to say a few things...

Number #1

Have you headed over to join our team for the Jingle Bell Run/Walk? Registration has gone up to $30 but you do still have time!!!!! Also, you can always make a general team donation. There's a kids 1K and the price is always $10 with Elves along with an Elf Village where kids can do crafts. And, of course, you can donate any amount you like until the day of. This is a great way to kick off the holiday season and we want everyone to share this with us!

#2
So winters here. Anyone who knows anything about arthritis knows that that can be a tricky business when you are prone to stiff joints. We've had a few days of Siobhan has woken up with stiff/painful knees. It doesn't seem to be keeping her down too bad but I worry that as the weather gets colder, it will get worse. :(

Big News....Jingle All The Way...

Whenever the Arthritis Foundation has a big event, they always choose a child with JIA to be an honoree-sort of the face of Arthritis and 'voice for hope' to show that life can be normal. Back in June, we were able to meet James Light who was the honoree for the Arthritis Walk. He was super sweet and very inspiring. You can read it here. Siobhan even sees the same Doctor!

Well, we were given the opportunity for Siobhan to be the honoree at this years Jingle Bell Run/Walk so we jumped on it and we just got word last week that it's official! How exciting is that!!!! We're so happy and excited to be able to share her/our story with everyone who is struggling with arthritis and to bring awareness to the fact that there is a huge need for more research, but ultimately, what we need, is a cure!

For this event, our family will be able to help in some of the planning of the event, work with local media, share our story with the community and Siobhan will be able to start the race. We also started a team just like we did for the walk back in June.

Now, I really don't like to solicit people for money or ask a lot from people, but this is obviously something that is really close to our family so I am going to put it out there. So here's where you come in....

1)We need team members to fun with us! There is a $25 reg fee which goes toward our fundraising goal of $1500.

2)If you don't live close, you can still donate to our team. A lot of very generous people donated to us for the last walk and I definitely don't expect that again. But the option is there. If you've never donated before, just know that any amount helps.

3)Come and cheer us on! There is going to be a lot of fun stuff going on at the Jingle Bell Run/Walk so come and get into the holiday spirit and cheer on 'Siobhan's Secret Weapons'. Through this whole arthritis journey, the moral support has meant just as much to us! Surrounding ourselves with people who want the best for Siobhan has been awesome!

If you're interested in helping us one way or the other, here are the event details:

When: Sat December 3
8.30-10am : Registration
9.15am : Holiday Costume Contest!
9.40am : Kids 1k Run with Elves
10am : Timed 5k Runners Begin
10.10am : Untimed Joggers/Walkers Begin
5k Results + Awards Ceremony to follow.

Where: Trolley Square-Southwest Plaza

How: You can run or walk, timed or un-timed

So if you want to join our team head on over here and find our team. This go around, we've called our team 'Siobhan's Secret Weapons'.

Rated R, for Remission...

So it's been like a week, but I haven't been on the computer as much as normal, so I haven't really blogged much. Most people already know our great news about Siobhan's arthritis, but I wanted to put it out there for the masses (how many of you are there?)

Last Thursday, we had a visit with Dr. I-she's Siobhan's rheumatologist and she's awesome! We were there for a follow up to check on Siobhan's joint injection sites. As usual, she ended up doing a complete examination of all of Siobhan's joints to make sure that her affected joints are doing well along with making sure that the arthritis didn't feel like attacking any other joints. Everything looked so great, Dr. I couldn't even remember which joints were injection because none of the typical signs were even there (i.e. tissue atrophy, dimples at injection sites). We got good news at that point that there was no adverse reaction to the injections. Woo Hoo!

Then Dr. I laid the big one on us. Siobhan is considered being in 'Clinical Remission with Medication'!!!!! This is a big deal and I'll tell you why. We've always been told, that there are a few possible outcomes for this arthritis journey. 1) Siobhan could outgrow it. That happens to less than 25% of patients. We're not holding our breath. 2) Siobhan would have continual flare ups and issues for the rest of her life. 3) Complete remission where there is no signs of active arthritis in any joints without any medication. Well, we are on the first step towards getting to number 3!

So how do we get to #3 you ask? Right now, Siobhan's status is defined as having 'no active signs of arthritis in any joints with medication'. So we know that if we took Siobhan off of her weekly injections, her arthritis would rear it's ugly head and cause us all kinds of problems. So we're going to keep her on the Methotrexate for a year from September 8th and see how it's looking at that point. If her status is the same at that point, we'll take her off those weekly injections and if she can handle that, then she will be considered to be in 'True Remission'.

We're so excited about this because it took a little longer for us to get it under control than it usually does for typical patients and we had to do a little more than most. But we're there and that's awesome! Dr. I took us off of the 6 weeks visit schedule and moved it to every 3 months-so that's awesome! Over the next year, we're going to hope and pray that the meds keep working and that the arthritis doesn't decide that it likes her elbows or hips or any other joint.

There's nothing like seeing your daughter in extreme pain or watching them try to keep up (granted Siobhan didn't have a huge problem with that, she just found ways around it). But there's also nothing like knowing that the likelihood of seeing it again, has been exponentially decreased!