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.

This is our story in a nutshell.

I'm a member of three great groups where we talk about SOJIA and JIA, mostly other parents, but these support groups have been my lifesaver.  No one can understand what it's like unless you live through it or watch your baby live through it.  So when one group asked me re-introduce ourselves I wrote this below and thought I would share it.  This is our story in a nutshell.

Hi friends. My daughter was diagnosed almost one year ago with systemic JIA, March 7th, 2012 to be exact. Her onset was atypical, no joint involvement just fever, rash, pericardial and pleural infusions and a bad case of Macrophage Activation Syndrome (MAS). She spent 57 days in two different hospitals getting this nasty disease under control and came down with it while I was on deployment (I'm in the Navy) so that last time I saw her pre-SOJIA was over a year ago. I mention that because this seems surreal to me. We make a family photo calendar and the photos from last December where those we took pre-SOJIA and it seems unreal to me that this has all happened. The doctors originally thought it could be leukemia and then she got very bad very quickly so they flew me home and I spent every day with her in the hospital except for the first week. Since her onset we've seen lots of joint involvement, although the inflammation comes and goes quickly. She has constant flares that last between a day to a week or more, and although the fevers are gone the rash is her constant companion. Emily hates the steroid puffiness and her infusions, but she's a trooper and no longer even cries when she gets her IV. She's on bi-weekly Actemra infusions, cyclosporine, prednisone and prevacid. We've finally got her down to only 3ml of prednisone once a day, but her Rheumatologist thinks she may be on steroids for a long time. She was off them for two weeks about three months ago and had a flare and MAS return so we are taking things very slow now. I hate this disease and have made it a life goal to inform everyone I can how nasty it is and to spread the truth about it; it's not just arthritis and it's not the same at RA or osteoarthritis and it has and can kill children. Oh and my pet peeves are anyone who suggests this can be cured with probiotics or tells me their grandma had the same thing in her old age.

I say it's a nasty disease, but today Emily is happy and active and six months ago she was depressed and could barely walk so there is lots of hope for a great future.

The morning after

Since we have talked about infusions a lot and I try to let everyone know when infusion Monday is I thought it would be important to mention the day after, more importantly the morning after.

Infusions have become routine.  Emily only says "ow" during the IV stick and she rarely cries.  So I can say without a doubt she is a tough cookie.  It's the morning after that causes us grief.  All these pokes and pricks and medicines can take an emotional toll on everyone, but especially Emily.  She is not herself a lot of the time thanks to Prednisone and infusions can really drain her physically and emotionally.  The morning after an infusion is where we see it.  She doesn't want to get up, she doesn't want to get dressed, eat, take her medicine or go to school.  She just wants to lie in bed.  I can't say I blame her.  We are suppressing her immune system, pulling her out of school early, imprisoning her in a hospital bed for hours and then have the nerve to make her go to bed a couple hours after we get home. 

I will blame this all on adjustment.  It's not an easy thing to adjust to, her body needs the infusions because by Friday night she'll have a rash again and soon after joints will hurt and it will be hard to get up in the morning because she is stiff and feeling yucky.  The problem is we get used to getting better after going to the doctor.  We take some antibiotics or other form of medicine for two weeks, sometimes go in for a follow up and then we recover and get on with our lives.

I think this is when not having a cure really hits home.  Emily wants to know when she will be done with infusions and medicine and I have no answer for her.  I wish I could say there were only two more, but it's a steep climb for her.  Some children respond immediately and are off steroids and doing fewer infusions and some, like Emily, still have elevated white blood cell counts and rashes and joint pain and there doesn't seem to be a light showing an end to the SOJIA tunnel. 

Tomorrow morning things will be back to normal and we'll be assuring Emily she doesn't have another infusion for another week.  Then infusion Monday arrives and we start all over again.

These children deal with a lot.  We are blessed though; Emily is in school (most infusion center children are not able to go to school because they are on lots of chemotherapy and dealing with cancer), Emily is happy and relatively healthy.  It could be better, but it could be a lot worse.  For now I am happy to keep the status quo because I fear if I start longing for better I may actually get the worse and four hours every other Monday is no problem when compared to being a patient in the hospital or having an empty bed with no six year old to wake up grumpy in.