Advocate

Emily's white blood cell count is finally normal, but we aren't weaning more steroids yet because her platelets went up (you know those tiny little guys that form scabs on you cut...or blood clots in your blood stream).  It's ok because really the steroid amount is not much anymore and we've gotten used to the occasional mood swings. 

Even though it seemed like bad news for me since I am desperate to get Emily off one of these medications I took it well because an email reminded me that there are 11 states where there are no pediatric rheumatologists and had we lived in one of those states with such a sudden and severe onset we would not be concerned about long term steroid use, we would be a family of three and not four.

So today I took some time to advocate for the children in those states. 

I sent this email to my Senators and followed up with phone calls to each Senators D.C. office: 

(It took me a total of 20 minutes.)

Good morning,

I’m contacting you today requesting the Senator’s support to fund the Pediatric Subspecialty Loan Repayment Program at the Health Resources and Services Administration with $5 million in Fiscal Year 2014.

     

Currently there are 300,000 children in America living with juvenile arthritis. Yet there are less than 250 board-certified, practicing pediatric rheumatologists to care for them. In eleven states, there isn’t a single board-certified, practicing pediatric rheumatologist!  Had my family resided in one of these eleven states my daughter would have lost her battle with this disease before we even knew what it was.

In 2012 my then five year old daughter became suddenly and severely ill.  Thanks to the fact that there was a pediatric rheumatologist in the area she received the diagnosis of a rare and potentially fatal form of Juvenile Arthritis known as Systemic Onset Juvenile Idiopathic Arthritis within two months of her onset.  Even with this quick care she still required 57 days of hospitalization and monthly follow-up with a pediatric rheumatologist.

If funded, this program will incentivize more doctors into a field where there is a critical shortage.

These 300,000 children deserve proper medical care and easy access to it and even though the children cannot vote for you please remember they each have two parents of voting age.  That is 600,000 votes!

Thank you for your time!

 

So, if you have 20 minutes today will you contact your Senator as well?  Even with just an email.  It could help save a life someday.  You can find your Senator's contact information here (http://www.senate.gov/), just select your state from the drop down menu on the top right side of the page.

Running underwater

Everything about this nasty disease just sucks.  Every time we do blood work we hope to see a normal white blood cell count.  It has not been normal in over a year.  That is in fact how this all started, high white blood cell count.  So every other Monday we find ourselves a bit disappointed and just feeling as if we have no idea what to do.  I even asked her Rheumatologist if we can just consider high her new normal and was reminded that high is not good and not a new normal.  So each appointment we add a new medicine or increase an existing one.  This last time we increased the cyclosporine, a potent immunosuppressive agent. 

With all that has happened this past year we watch carefully for any changes.  So far Emily has improved so much health wise and emotionally.  The rash has not been around at all and she hasn't had a fever in a year.  She is happy and off physical therapy completely, although we continue with water therapy to keep her joints moving and help increase strength.

In the past few months we have noticed a decline in school.  She is only in kindergarten and since her birthday is at the end of the year she is one of the older children in the class by virtue of missing the cut-off date to enroll.  I just happened to mention this to the Rheumatologist because I know inflammation can occur in the brain and at her onset she had an episode of night vomiting, a symptom of pressure in the brain, and Vasculitis (inflammation of blood vessels) is a constant plague.  When I mentioned it the doctor replied immediately that yes this nasty disease could cause learning disabilities, but to find out if that is the case we'll have to do more testing and that can cost up to $5,000 because it is not covered by insurance, even our great insurance. 

So, since the brain is a muscle we are going to start getting Emily to exercise her brain more.  If she tells us she wants to learn something, she asked if she could learn Spanish, we say yes and so she is going to her first Spanish class after school tomorrow.  We don't know how well it will work out, but just like teaching her how to exercise her joints without hurting them we've now got to teach her how to work around any learning difficulties she may have.

There is just so much nastiness to this disease that such a short time ago we didn't know even existed.  Have you ever had a dream where you are trying so hard to run fast and you can barely move as if you are trying to run underwater? That is how we are feeling right now; but we shall keep pressing forward and do whatever we can to tell everything that children get arthritis too and they need a cure!

renewed hope

March 2012


March 2013

Last Easter our egg hunt was in the hospital and Emily was so sick she couldn't walk or stand up from sitting without help. Today she has an egg hunt with her Kindergarten class and she was hopping around class when I left her. Easter seems an appropriate time for good news, we have a renewed sence of hope.

Emily's white blood cell count dropped to 16, still elevated, but finally coming down instead of moving between high (20) and high high (30+) (labeled HH on the results). To give you some perspective on what that means; normal levels are 10, 16-18 means you're sick with a virus or infection, 20+ for prolonged periods means something is seriously wrong and 30+ is when they start looking for cancer.

We aren't weaning steroids until we get lower, but moving in the right direction and our next infusion is Monday.  The rash has popped up a couple of times this week, but it's been very short lived and Emily seems to be more active than ever since her onset so today we have reason to be optimistic. 

I won't even say remission yet, but I could see us getting off steroids by next year and then maybe once we get to that point infusions will not be so frequent.  We will still take it a day at a time, but we have reason to be hopeful this Easter and we thank our Heavenly Father for this second chance for our daughter. 

A new kind of anniversary

I wrote this for another publication while I was thinking about this past year.  A year ago we were in the ICU and there were far too many times I wasn't sure we'd be bring Emily home with us.  We've learned a lot this past year.

Always Get Up, Always Keep Moving, Be happy and Remember Your Mother is Always There for You

One year ago, almost to the day I am writing this, my then five year old daughter developed a severe chronic illness I never knew existed.  The diagnosis was Systemic Onset Juvenile Idiopathic Arthritis and my daughter went from sick at home with a fever to the ICU in a matter of one month.  It was a surreal experience and after 57 days in the hospital, when my daughter was finally discharged, I felt like the first time mother of a newborn all over again.  I called the doctor for everything and noted every small physical change as if it was potentially deadly.  After almost losing her three times in 57 days the reality that there is no guarantee for a tomorrow was and still is constantly on my mind.

With a chronic illness where the onset is so sudden and severe the fight for survival overtakes everything else.  Finally when survival no longer seems like a fight there is an emotional wound that was left; almost as if we all had a case of post traumatic stress syndrome.  Every breath at night is registered; every fever, cut scrape or bruise is treated with seriousness and serves as a reminder of the illness. 

Almost immediately after she was discharged from the hospital it was apparent to me that my daughter was sad, possibly depressed because of this disease.  The illness and hospitalization left her unable to walk very well, get up from a sitting position or even pull her pants up after using the bathroom.  I realized how serious the emotional impact was when I asked my daughter what she wanted her physical therapy goal to be and she said she just wanted to be able to jump again.  To me it was as if she was asking if she could just be well again. 

I have no idea what the future holds for my daughter, there is no cure for this disease so while I teach her to live with this illness I’ve also decided I need to teach her four important things:

1.       Always get up. No matter how much pain or stiffness she wakes up with in the morning, what joint bothers her that day or how many times she falls down because she isn’t as strong as she once was; she has to always get back up. 

2.       Always keep moving.  She frequently battles stiffness, which only goes away after she gets up and moves around allowing her joints to lubricate themselves.  It’s the same way with life, she has a difficult road ahead, but as long as she keeps moving things will work out.

3.       Be happy.  We all have trials, this is her trial, but if she’s happy it will be a lot easier to endure.  We focus on finding the good in everything; she may have an infusion at the hospital every two weeks but at each one she gets to visit the prize box after the nurse places the IV and she gets to pick a special meal. I want her to love life; I want her to know how to love life in spite of all the pain.

4.       I will always be there for her.  She may marry, she may not, she may have children, and she may not.  She may live to be one hundred and she may not, but through it all I will always be her mom and always be right there with her, rooting for her.  With a disease that is waging an invisible war inside her body she needs to know that I understand and no matter how much pain there is I will always be there for her.

Reading, writing and arithmetic will come with time and help from great teachers, so if I can teach her these four important lessons then I will have done all I could to fight this disease as a mother.  

So my sweet Emily, this is for you. No matter what challenges you face in life; always get up, always keep moving, be happy and remember your mother is always there for you.

San Diego Arthritis Walk

In hopes of raising some money's for the San Diego Arthritis Walk we are going to be having a garage sale on April 13th.  All proceeds go to the Arthritis Foundation which provides funding for research, youth camps and The annual Juvenile Arthritis Conference.  If you are new to our story here's where you can learn more about Juvenile Arthritis and why a cure is needed for these sweet children living everyday with nasty autoimmune disease that not only leaves them living in pain, but often endangers their lives.

If you are in the San Diego area and would like to help we are happy to pick up any items you are clearing out from your spring cleaning.  We'd also be happy to have help the day of the sale.  Please email us at LTmom05@gmail.com.  Anything left over on the day of the sale will be donated to the Navy Marine Corps Relief Society Thrift Store.

Alone Together

SOJIA is an autoimmune disease and so most of the symptoms are internal and even the ones you can see like swelling or redness don’t appear to be serious so we feel alone in this a lot.

These children frequently feel discouraged and sad because of the pain or that they just can’t keep up.  Two days ago Emily’s leg was hurting her after swim and she just started crying.  I am sure she was also tired and steroids don’t help, but I just could feel her pain in my heart. 

We’ve been getting her excited about this upcoming Arthritis Walk and invited all her extended family to come and participate with us, but because it’s a drive and other issues no one has been able to say they would come so it was a big deal to all of us when her kindergarten teacher asked if she could join us and even wanted to invite Emily’s classmates.  I was thrilled. 

Supporting these children is crucial, they should never feel alone.

So many ways...

This disease has changed Emily's life in so many ways.  This morning my husband made the mistake of using the word skinny and Emily began feeling bad that she was not skinny, like she used to be.  She means she doesn't look the same anymore; the steroids cause puffiness which gives Emily the appearance of being overweight.  In fact when she take her anywhere and she rides in the stroller, like the zoo yesterday, people will often stare at her and I feel like they are probably thinking something like "Why is the child in a stroller, she should be walking" or perhaps the term "childhood obesity" goes through their mind.

Even with the weight gain Emily is only in the 30% for height and weight so she is not overweight at all and she is very active, but until we shake the steroids completely we won't be able to shake the puffiness.  Even once we do get off steroids we won't be able to shake this nasty disease.  It's here to stay and there are so many things it impacts.  Going somewhere like Disney Land, that would be a monumental task because steroids + exhaustion + stiffness and pain from an all day adventure = super tantrum or at the very least extreme whininess. 

We have to be careful what we say; we don't talk about weight (or try not to) instead we talk about getting plenty of exercise and eating healthy.  We don't talk about Emily having children, instead we are sure she understands that adoption is a great way to become a mother too and we encourage her to learn and say maybe you could be a doctor or a scientist someday.  Someday we will have to explain to her that these new medicines could make is hard for her to have children.  I imagine when she marries that will be a scary point for her, when her husband and her decide to try she will wonder...

Dentist visits are another thing we learned yesterday.  Cavities are common with this children because they are immune suppressed and cavities are caused by bacteria.  The medicines can also reduce saliva in the mouth and make her teeth and enamel more susceptible to decay.  Now she has a cavity to fill and I don't want to put her through that, but we have to because cavities are because by bacteria and we need to get rid of the bacteria.

We talk about finding the good out of the bad.  I'm afraid I have yet to find the good out of this nasty disease, but I still have my sweet girl and if this had been five or ten years ago I would not and so I can at least say treatments have made progress.  I wish more people knew what this did to these sweet children.  I read a post in a Facebook group about a SOJIA child who tried to commit suicide.  These children are in pain all the time.  It breaks my heart to think what that mother is going through right now.  We've just got to keep showing Emily all the good in life to help the puffy badness of SOJIA maybe not seem quite so bad.  I hope we can do that as she gets older.