Team Huddle

Today it dawned on me how much the statement "there's no I in team" relates to Alex's journey with arthritis.   Yes, she is the one with the disease but there are so many there behind her to help us get through it.  Let me introduce them to you.....

Family: Yes, of course her dad and I are part of her team and even her brother and sister (sometimes, ha).  But let's not forget my parents Sue and Tom.  Did you know that it was my dad who drove us down to Children s Hospital and stood beside me as I learned to give Alex her first shot.  My mom is always telling me about new things she has learned  regarding arthritis and probably Alex's #1 cheerleader! She even offered to call me every Wednesday and Saturday night just to remind me to give Alex her shot! Amazing!

 My extended family including my brother Mike and his wife Stephanie, my cousins Tricia, Sue, Lynne, Karen and Eddie and aunts Anne, Peggy and uncle Ed...they have all been so awesome in praying for Alex and keeping updated on her treatment.  We love and appreciate them all so much!

Dr. Llona Szer

Doctors & Medical Support: If it wasn't for our Pediatrician, Dr Lauren Choi, suggesting we get a second opinion from a rheumy even after ALL of Alex's tests came back negative we would have never known Alex had arthritis.  Or, we would have found out after much more damage was done to her joints!!  Our next angel was Dr, Llona Szer (pronounced sher or Cher), Alex's rheumy.  Now, we didn't see eye to eye at the beginning and I even left her office in tears once after she yelled at me for not taking things serious enough but boy do I love her now!  Not only is she the Director of Pediatric Rheumatology for Children s Hospital, San Diego but also the recipient of many awards and accolades! Alex adores her and I'm pretty sure the feeling is mutual since she is the one who nominated Alex for the Arthritis Foundation Honoree.  I'm already dreading the day when Alex has to find an adult rheumy....but I have a feeling we will be in touch with Dr. Szer forever!
Alex's team also includes an Opthomologist, dermatologist, physical therapist, and all the MRI tech's, the ones that draw her blood, the nurses and the appointment makers!

Friends & Co-Workers: As the mom of a child with an autoimmune disease I walk a fine line.  One side is living life as if nothing was wrong, all is great in the world.  The other is living in the throws of "why me?", "why my daughter", doctors appointments, needles, pills and frustration.  I try to live right in the middle.  Sometimes I fall over into the dark side and that is where you, my dear friends come in!  The friend that sticks out the most in my mind is Michelle Naegelvoort.  Michelle and I met when her daughter Alexandra (yes you read that right) and my Alex went to school together in K-1 grades.  My Alex left that school to attend one closer.  A few years later facebook arrived along with lots of friends I hadn't seen or heard from in years.  Michelle was one of them!  In fact, except for once in 2005 (i think) we have not seen each other in over 8 years (and she only lives 25 minutes away!).  So it turns out her son Dutch also suffers from an autoimmune disorder, so we have a lot in common.  Our kids go to some of the same doctors and have been on some of the same meds.   It has been amazing to have someone to talk to that has gone through exactly what we are going through and give great advice or just listen!   Anyway, our late night chats on fb mean the world to me and someday we will actually get away for our girls trip to Disneyland like we keep talking about!!

I have other friends too that are always there to support and listen! Girl Scout moms, school friends, church friends...the list could go on and on!

Support Groups: Yes, I belong to a support group....sorta.  There is a group of amazing moms online (facebook) that I have contact with on a daily basis.  The group is specifically for moms of kids with juvenile arthritis.  We are always helping each other with advice, comforting when something is going wrong or jumping for joy when a child finally goes into remission!  We are from all over the world...some from as far as Australia!  I think we would all agree that having this group has been one of the best things that has happened in this journey!  Someday we will have to plan a meet up!!

So, as you see I could go on and on.  My point in all of this is that Alex could not be going through this alone!  Each one of you hold a special position in the team.  You may be the play maker ,the star player, the ref or the one on the bench who gets pulled into the game when the going gets tough!  I can't thank you all enough!  And thank you for being part of Alex's Team!  Now it's time to go beat this!!!

September

Awww Septermber!  I love this month.....summer is coming to an end and fall is on the horizon.  All the kids start a new year at school with a fresh slate!  The crazy thing is that San Diego just started getting warm!  We had a very cool "summer" but ever since school has started it has been in the 80's!

Other than that we had a pretty quiet August.  Kiersten turned 11 and is having a sleepover this weekend to celebrate with her friends.

I have a weird thing going on....my fingers on my right hand are numb....like all the time.  I went to the doc and she is pretty sure I have a pinched nerve in my neck.  I have to get an MRI and see what's going on with it.

We have a meeting next week at the Arthritis Foundation to go over the upcoming events.  The official Jingle Bell Walk kick off party will be on 9/25 at Road Runner Sports!  This will be her first public event so fingers crossed!! Bottom line it will be lots of fun!!!!

Well, that's it for today.  Don't forget to go here to sign up for the Jingle Bell Walk!!  If you are not local you can always make a donation.....any size counts! You can also search to see if there is a walk in your area and start your own team!!  No child should have to deal with arthritis!

Beauty Rest or Extreme Fatigue?

Hello friends.  Hope you are all having a great summer!  It has been a very mild summer here in San Diego.  The seasons really are changing!  We have not used our A/C once this summer which is really crazy!  Hey, I'm not complaining....I love a breezy 74 degree day like this!!

The girls start school in a week.  I'm not looking forward to it at all.   Carpooling, homework, early bedtimes and oh yeah homework aren't for me!  But, it is what it is.  Alex will be a high schooler!  9th grade!  I remember 9th grade like it was yesterday.  My first boyfriend, lockers, Friday night football games, dances, etc.  I am so excited for this time in her life!

Kiersten will be attending the same school but entering Middle School. It's a K-12 Charter school.   My youngest Ryan will still attend the elementary school down the street.  He will be a 4th grader.  He has the same teacher that Alex and Kiersten both had so that will be nice.  We really like her and she knows our family well.

Alex seems to be doing well......that is when she is not asleep.  I have never seen someone sleep as much as her.  I think what has happened is that her sleep times have been  turned around.  She is staying up so so late because she can't fall asleep but then she sleeps all day.   Last night I told her to go to bed at 11 pm and as of right now, 11:44 am she is still out.  I have gone to rouse her a couple times and she can hardly keep her eyes open to talk to me.

I have chatted with a few other RA moms and they all say their kids are the same. It could have to do with the fact that her body is constantly attacking itself, or the meds, hormones or that she simply needs the sleep.  I told her we need to start keeping a log so that we can see if there is any pattern to it. When she is awake she is fine.  She is full of energy and  happy.  I guess the reason it concerns me is because it seems to be getting worse.  I don't know how she will be able to sit through a day at school let alone come home and do homework.

Her appointment is in a couple weeks but I am hoping to get it moved up.  I will be sure to let you know.  So, bye for now.  Have an amazing week and I hope that wherever you are, you are able to get out and enjoy some great weather!!  Happy Summer!!

Alex's Bio

We were asked to come up with a bio to send to the Arthritis Foundation to use for a press release and I thought I would share the finished product here.....

Alex Ochoa is a 14 year old ninth grader at Guajome Park Academy.  She lives in Oceanside with her parents Pattie and Ben, sister Kiersten and brother Ryan. She loves the internet, her iPod and hanging out with friends.  There’s just one thing that sets her apart from other teens, juvenile arthritis.It all started in August of 2010. While out shopping Alex noticed how the cute rings at her favorite store wouldn’t even fit over her knuckles. Concerned by the swelling in her hands her mom made an appointment with her pediatrician.

Her doctor suspected it was Lupus or Arthritis and ordered lab work right away.  Even though the labs came back clear her doctor wasn’t convinced and referred her to rheumatologist, Dr. Szer.  After an exam and hearing how psoriasis runs on her dad’s side of the family Dr. Szer was convinced Alex had Psoriatic Arthritis and ordered an MRI.  Unfortunately the MRI confirmed her suspicion.

Alex started with the medication Methotrexate (MTX). MTX is a mild chemotherapy drug used to suppress the immune system.  Due to the dangers of this drug Alex now has to have monthly blood labs done to make sure further damage isn’t being done to her organs. This medicine makes Alex feel very fatigued and nauseas for a day or so after taking it.  This is commonly called a "MTX Hangover" in the juvenile arthritis world.

After another MRI showed that the medication wasn’t helping her doctor prescribed Enbrel.  Enbrel is an injectable medication that is given to her twice a week by her mom. Many people are becoming more familiar with this medicine due to the commercials featuring PGA golf pro Phil Mickelson.  He also suffers from Psoriatic Arthritis like Alex.

After months of being on both medications her most recent MRI is showing a slight improvement. This is a small step but one in the right direction.  The goal is to have Alex’s arthritis go into remission.  Since there is no cure for arthritis Alex will have it for the rest of her life.  But, with the right medication it is possible for her to live symptom free.

Having arthritis has been hard for Alex and the whole family.  The hardest part so far for Alex has been the fatigue.  There are days when Alex will get home from a long day at school and head straight to bed.  Last year she missed over 20 days of school due to illness, doctor appointments or just fatigue.

Her good days are spent acting with her Advanced Drama Group at her school, hanging out with family or friends, catching up on her favorite show Doctor Who and doing art. But without a doubt, anyone that really knows Alex knows her biggest passion is reading.She is hardly without a book and even read the entire Harry Potter series during her 7 week summer break a few years back.

Her parents credit their Christian faith and family in getting them through the tough times. They spent quite a while educating themselves on arthritis and her mom even started a blog (alexarthritis.blogspot.com) to reach other parents out there who are going through the same thing.

The future looks bright for Alex. She is entering her freshman year at high school and hopes to go to art school afterwards.  Her lifelong goal is to someday work at Pixar Studios in the animation department.

Being chosen as the Arthritis Foundation Jingle Bell Walk Honoree has been a thrill for Alex and the entire family.  She takes this position very serious and looks forward to educating her family and friends on arthritis.  She hopes to speak to her classmates, peers and church about arthritis awareness, symptoms to look for and what needs to be done to find better medications and even a cure someday.

She started her team, Alex’s Alliance for the upcoming Jingle Bell Walk and hopes to get at least 50 walkers to join her.  Family, friends, neighbors and even her Kindergarten teacher have already stepped up to say they will join her team. She also has aunts and cousins coming all the way from Tennessee to support her on the big day!

The Arthritis Foundation is a wonderful organization that helps bring support and awareness to this awful disease.  Working with them has been an honor for the entire Ochoa Family.

So excited to share some big news with all of you!!  Alex was chosen to be this years Arthritis Foundation Jingle Bell Walk- San Diego Honoree!!  

We were thrilled when we received an email from the AF  asking us to come meet with them.  We are not too sure what it will involve for sure but it will be fun!!  We have already started a walk team called Alex's Alliance.  If you are interested in joining our team you can just go HERE.http://sdjbr.kintera.org/faf/donorReg/donorPledge.asp?ievent=1021954&supId=362173464

We are so happy to bring awareness to Juvenile Arthritis and help people realize that yes kids get arthritis too!  

Hello friends...thanks for stopping by!  It's March now.....we are in the thick of busy birthday time!!  Alex turned 14 on February 25th!  It was a very fun day!  She was in a play through her Advanced Drams group at school.  Afterwards we had cake with her cast and crew!  It was great to see how loved she is!  She did a great job and made us very proud!  This Saturday is my husband Ben's birthday and the following day he and Alex are going to Disneyland to celebrate their birthdays and have a very special daddy/daughter day.  Next week on the 16th I turn 41...and on the 19th my son will be 9! Fun Fun times ahead!  

 Alex is in her 3rd month on Enbrel.  She will be getting her labs done (blood work) this week and has her appointment with her rheumy on Monday the 12th.  At this point I have no idea if it is doing anything.  By looking at her hand you can still see swelling so I think the only way to truly know is by doing another MRI.  I am not sure if the doctor will order one right away or not. 

I was really happy to meet (virtually) some other moms last month who have children with Psoriatic Arthritis.  I even met someone who has a daughter with arthritis without the psoriasis so it will be nice to keep in touch and compare stories with each other.  Her daughter is a bit younger and unfortunately has more pain and symptoms than Alex.  She just started Enbrel so I am praying she gets lots of relief soon!  

For anyone just starting this journey I wanted to get you started with some great sites.  There is a ton of information there for you!  

The Arthritis Foundation-Lets Move Together

National Psoriasis Foundation

Questions

So after that last post I received a few questions for me.  Don't worry....Alex is still going to answer your questions too. I will just post the questions and you can scroll down and read any you are interested about.

• 1.  Do you have Psoriatic Arthritis or Psoriasis? No I don't but my husband and his mom have Psoriasis.  His mom also has arthritis as well. 
• 2.  Does Alex have Psoriasis? No, not yet anyway.  Only 15% of people with Psoriatic arthritis DONT end up getting Psoriais.  
• 3.  Will it ever go away?  Well, her symptoms can go away (remission) but she will have it for the rest of her life. 
• 4.  What's the hardest part for you as a parent?  I would have to say the worry about it all.  You worry if these medicines can be doing permanent damage, about her long term prognosis, what if we lose our insurance and on and on.  But, I would have to say that I have a lot of confidence in her doctor and feel that everything we are doing is the best we can do at this point.  I pray about it a lot too and have our church and friends praying for her all the time. 
• 5.  Will your other kids have it?  We really don't know.  I was just reading that it is not extremely common for siblings to get Juvenile Arthritis.  So, we will just wait and see. 
• 6.  What's one thing that you want other people to know about PA?  I think what I want everyone to know is that yes kids can get arthritis too and it can be very serious.  We are so so lucky that Alex has a very mild case but there are thousands of children out there that are wheelchair/home bound because their disease is so debilitating they can not function.  I had no idea until Alex was diagnosed.  These families need our support through prayers and donations so that a cure can be found! 

That's all I have for now.  If you have any questions for Alex or me just leave a message.  Thanks again for reading about our lives.  It means a lot to me!