Jenna 12 yrs old

Jenna 12 yrs old

Tuesday, April 17, 2012

The New diagnosis 2012

It was the beginning of a new year and things were  starting to look good.  Jenna's labs had been good after the Christmas vacation, or at least they were not any worse.  Every year since she has been diagnosed I would pray that this would be the last year of treatment for her.  She had been complaining about headaches every now and then, but I always thought they were the side effects from the IVIG.  These head aches were not going away, they only seemed to be getting worse and seemed to last longer. She had just had her usual IVIG treatment over the weekend, and I thought she was having a hard time with this last infusion.  It was a Tuesday night January 31,2012, Jenna had been sleeping with me for the past few nights ( I think she knew something was really wrong) She woke out of a dead sleep screaming & crying saying that she felt like someone was jumping on her head.  I had no idea what to do at this point.  I was able to get her settled down and she went back to sleep.  It wasn't that  I wasn't worried but with it being so late and I really didn't want to over react I figured I would wait until morning to call the Doctor.  When she got out of bed the next morning, she was crying saying there was dirt in her eye...I knew at that point something was wrong.  I looked at her and could not see anything in her eyes.  I called the eye Doctor and explained what had been going on with the headeaches and now she was seeing black floaters in her eye.  That would be the day that changed things for my dear Jenna...little did I know at that point how serious her condition really was. 

I will never forget the call I would later receive that afternoon from the eye know things aren't good when the Doctor calls.  I was at work at the time and my Mom had taken Jenna that day to see the eye Doctor.  I could hear the urgency in his voice.  He told me that Jenna was on her way to the ER at All Children's hospital to have some test done, that she had a tremendous about of pressure on her brain, so much that she had bleeding behind both of her eyes.  He wasn't sure exactly what it was but thought it could be a tumor or pseudo tumor?  I had heard of a tumor, but I didn't know what pseudo tumor ment.  It was like I was frozen and couldn't move.  Why did I have to be so far from the hospital, what did all this mean, what was going to happen to my little girl?  So many things run through your mind when you don't know what your dealing with.  By the time I had arrived to the ER, she had already had a quick MRI done and we were just waiting to see what the Doctors would say.  They did not see anything in the MRI, they thought at that point that she was dealing pseudo tumor cerebri.  Ok for those of you who have followed Jenna's story know that everything that she has been diagnosed with has been something very rare that people don't know that much about.  So of course when we got this diagnosis why should this be any different! 

We saw the neurologist the next morning and he suggested that she have a lumbar puncture ( spinal tap) which would be able to measure the amount of spinal fluid & also they would be able to tell if there was too much fluid.  She was so brave getting ready to go in for the procedure.  She would be put under general anesthesia...not that she hasn't had to do that before.  The procedure itself would not take that long and the Doctors said they would be out to speak to me when they were done.  Boy did it seems like forever waiting and waiting for the Doctor to come out so we would know what was going on.  When they measured her pressure it was way over what it was suppose to be.  They had to drain quite a bit of fluid off to relieve the pressure.  We would have to wait and see how she would do.  It is just so sad to see her have to go through all of this.  She stayed for a few days and then we went home.  We were not even home 24 hours and she got very sick...we ended up back in the ER only to end up readmitted.  The side effects from a lumbar puncture are headache and nausea.  After a few days of Jenna laying flat in bed and having meds given for pain she was able to go home...again.    We followed up with her peds Doctor and then neurology & a neuro-ophthalmologist.  I had no idea how serious this condition was.  Everything I read was so scary.  There were different reasons why a person would end up with pseudo tumor cerebri...out of the list Jenna had over half.  It could have been from the meds, it could have been a side effect from the meds, it could have been the fact that she had put on so much weight from all the steriods over the past few years that now it was causing a more serious issue...who knows???  What I was finding out was how very serious this condition was.  The eye Doctor was telling me about a certain eye surgery that Jenna might have to have to prevent her from loosing her vision, the neurologist was telling us that we may have to have a shunt placed to help with the build up of fluid.  Nothing that the Doctors were telling me was sounding good.  I remember crying day after day, there was nothing I could do to make this go away.  She had already been through so much why was she having to battle this?  I questioned EVERYTHING!  Doctors must have thought I was nuts!  It wasn't long and we were hame again only to find ourselves back in the ER because of the increased pressure...this would happened 4 times in 8 weeks.  It seemed that about every 2 weeks she was needing the fluid drained to releive the pressure in her head.  She was still having to deal with all her other infusions on top of these lumbar punctures.  It was not a good time for Jenna or our family.  She was in the hospital every week for 8 weeks.  We were all so very stressed out because there were so many questions that could not be it has been since her diagnosis in 2005 with Dermatomyositis.  Why would I expect answers, it wasn't like we could explain why any of this was happening!  After weeks of Doctors appointments and a number of hospital stays things for the past few weeks have been ok...I say that with my fingers crossed hoping that she won't have to have any more lumbar punctures.  They have decreased her steriods to once per month, they have taken her off cyclosporine, they have kept her methotrexate dose the same.  They have started lasix with the hopes that it will help keep the build of fluid down.  She has been on 2000mg per day of the diamox, that also helps with the fluid and the pressure on the optic nerve.  She has lost about 12-14 lbs and looks so much better...I can see her face starting to come back.  She has been on steriods since 2005 with only a short break between 2007-2008.  The steriods have taken a toll on her body and she has been working really hard to make sure she eats right and gets in as much physical activity as she can.  With her feeling so bad it was hard enough for her just to get out of bed and take a shower and get ready for the day.  She has been using the pool a lot since it is getting warmer and also has been riding her bike a bit up and down the street.  It is still very difficult for her to walk  for long periods of time and she gets tired very easily.  I am so proud of the way that she has handled her situation...I don't know if I would have the same attitude.  She has not been in school since the middle of the 5th grade and has missed the social aspect of school.  She has done very well with all of her grades and has the best teacher ever!  We don't know where we would be without Missy.  She has been a blessing to not only Jenna, but to my whole family!  With this school year coming to an end in a few weeks, I can only hope that Jenna continues to do well, continues to feel better and get stronger each and every day so that she may return to school in August and make some nice friends.  That is one thing that she wishes that she had...a friend.  This is one of the hardest things about being sick for so long, and one of the hardest things for a mother to see.  I pray every day for Jenna that when she is able to go back to school that she finds it easy and that the kids will except her for who she is.  I pray that all of this is going to be just a memory and Jenna can finally find some peace. 

I will try to update this blog as much as I can.  Everyday I say to myself..."I am going to sit down and write today"  of course everyday life is crazy as ever and I find myself laying in bed at night saying "another day that I couldn't update Jenna's blog" LOL  hey I have all I can do some days to to get through the things that HAVE to be done LOL.  I wish for more time so that I could do all the things that I WANT to do.  Hey a girl can dream.  For all the other families that are out there dealing with JDM we will get through this, we all have one another to lean on.  I am thankful for my JM MOMS out there without you I think I would loose my mind!  I am hoping to attend the JM conference in the fall and meet all the wonderful people that have come into my life because of this illness.  Life is not easy and we all get through it in different ways.  The important thing is that we get through it...each and every day!   LIFE ISN'T ABOUT WAITING FOR THE STORM TO PASS; IT'S ABOUT LEARNING TO DANCE IN THE RAIN.


  1. Wow!!! These past few months have been tough on Jenna and the rest of your family. I pray daily for Jenna to finally get a break and get off some of the meds she has to be on daily. Hopefully, she will be able to finally get off at least the steroids.
    It would be wonderful if you can make it to the conference in the fall. Dominic and I are going this year for the first time. His parents are supposed to be coming with me, which will be great for them. They really need to see more of what JDM is all about and meet all the parents.
    Sending you and Jenna lots of hugs and prayers.


  2. Jeez! I knew that you had a lot going on but wow!!! I will continue to keep your family in my prayers. How scary! It makes me wonder about how many of our JM families will go through similar situations. God bless you all!