A Mothers Heartbreak 

As I sit here reading over previous post it is hard to wrap my head around just what a long road this has been.  Things have not been great these past few months.  It seems every time we think we might be close to getting off these horrible meds its not soon that we find ourselves on even more.  I hate what this illness has done not only to my child but to the entire family.  Don't get me wrong we are a very close family and we are there for one another but everyone seems to be spread real thin.  Having two children with medical issues has not been an easy task.  I see my husband, he is tired not just emotionally but physically.  I don't think there are too many out there that work as hard as he does...he is a special breed LOL I don't know if he works because he feels that is his way of dealing with everything or he works to avoid what is right in front of him?  We all have our own ways of dealing with things and someone might look at the way I deal with things and not agree?  Who knows but I think that until they are in my shoes than all opinions should remain to themselves.  I have cried myself to sleep more nights than I can count.  I have laid awake trying to think of ways that I can fix things.  The worst feeling as a mother is to see your child in pain or sad.  I have tried everything I can think of to make things a bit easier for both of my girls...I think that they would agree that I have tired everything!  The one thing that I can't do is take away Jordan's cerebral palsy or take away Jenna's dermatomyositis, panniculitis, pseudo tumor or the depression that goes along with all of this!  You want so much for your kids to be healthy and happy.  These are suppose to be the best years of their lives!  Jordan is struggling with the demand of a student that is ready to graduate high school and move on to college and Jenna is struggling to just get out of bed in the morning.  

I have looked in the mirror and asked why?  Why my children?  Why now?  Why can't we find a cure?  So many what ifs...I don't think I will ever know the answer to any of those questions all I can do is continue to fight for my children, fight for what they need and deserve.  I just wish I could take the heartbreak away from them.  Jordan started her life off in the NICU and from there had extensive physical therapy, speech therapy & occupational therapy.  Once she was diagnosed with cerebral palsy she would then undergo many surgical procedures on her legs to help her walk better.  Jenna was diagnosed at age 5 with dermatomyositis and started a journey that has been like walking around in the dark trying to find the light switch.  The one thing that I can say about both of my girls is that they are both fighters and they have never given up!!!  I don't know if I could say the same if I were in their shoes.  Yes, they do get down and they have their "bad days" but for the most part they are pretty much the glass in half full types...unless you ask that question to Jenna these past few weeks she might say that the glass is empty!  Me on the other hand I don't know if I would have the same attitude?  I know that I could not have gotten though any of this without the help of my family & friends.  It takes a village to raise a child that I know for a fact!  There is no way I could ever do everything that is needed with two children that have medical issues.  From helping out with Doctors appointments, to therapy appointments to making dinners one would have to be wonder women to do it all by herself.  It seems with everything that is happening in the present I am having a real difficult time even processing what to do next.  Things never use to get to me the way they do now.  I use to be able to just go with the flow or in my case the rapids, but these past few months I feel like I am standing in quicksand and no matter how hard I try and pull myself out I just keep sinking deeper and deeper into the unknown.  

We are now on a new journey that will take Jenna to see a team of Doctors at the NIH in Bethesda Maryland.  Dr. Lisa Rider is one of THE top dermatomyositis doctors in the country.  I hope that she can come up with a treatment plan that is going to work for Jenna.  I hope that we find the answers that we need.  What I am so afraid of hearing from them is..."we don't know much about panniculitis or how to treat it but we can try this or that".  I have gotten my hopes up before when we traveled to Boston back when the panniculitis was first diagnosed and we were able to see a wonderful doctor at Boston Children's Hospital.  His response to us after the exam was..."well, you can try this".  We came home feeling like the wind had been taken out of our sail.  I guess that is why I have such apprehension about making another big trip.  It is so easy for someone else to say "oh yes you should go here or go there"  not that I am not willing to go to the ends of the earth for my child, I think it is more of what are they "really" going to be able to do for her?  I am going to keep a positive attitude and look at the glass as half full and pray that we fine some kind of answers.

For my Jordan she is on both an exciting but scary journey.  She will graduate from high school this year...which seems totally not real but totally is!!!  I can't help but look at her as my 4 year old that was struggling to walk with her new walker.  Why is it that I am finding it very difficult to let go?  I am terrified and I don't even know why LOL  I think it is because when I look at Jordan I see this 1 pound 12 ounce fragile baby that came into this world that I have had to "handle with care" and it is so hard to let her go out of MY comfort zone...she's fine with going to China, me I'm like "let's try something a bit closer to home" LOL.  She has turned into this beautiful your woman that I am very proud of.  She will do great things that I know!  I am so proud of her and everything that she has been through.  She has learned that this world is a beautiful place and there are so many wonderful opportunities but the sad part is that she has also learned that this is a very judgmental world that we live in and that people can be very hurtful by the words they say or the looks they give to someone they don't even have a clue about.

For me I am hoping that I can somehow find peace with all of this.  There are just so many changes going on in my own life, I mean really who has their thyroid removed and a hysterectomy all in one year on top of everything else???  My emotions were all over the place when I HAD all my body parts let alone lets take the 2 biggest ones out that control a persons emotions!!! REALLY?  If this is some sort of test by God I sure wish he would send me the progress notes so I know how the heck I am doing.  I mean I don't want to get a bad grade on life 101 that's for sure.  All kidding aside I really am in search of peace in my life.  I feel like I have been on the 405 expressway and can't find my exit!  Life is short and life is hard and yes nobody said life was fair BUT I just need a break.  I do love life and I am so blessed in so many ways with my family and friends and memories that I have made with them all.  I think we all in some way search for our meaning or purpose in life.  We all want to do great things in our lives but sometimes it is the little things that we are known for.  The one think that I want more than anything is for my kids to say that they has the BEST Mother anyone could ever ask for.  That is all I want.

I will continue to keep you all updated and try real hard not to let too much time go by before I update this blog again.  It is just taking the time to sit down, take a deep breath and let my thoughts out.  Thank You for listen to me.

It has been way too long since I last posted.  A lot has happened in the past year and I am working on getting this blog up to date.  I have so much information to share.  I will post later over the weekend. 

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 Doctor...you 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 answered...like 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.

Wishing for happier times

It's the beginning of another school year and while all the other kids are excited to be back in school with their friends, Jenna is frustrated with the fact that she will not be able to go to school full days again this year.  This just breaks my heart as a Mom.  I wish I could take her pain away, I wish I could make her smile.  She has missed so much not being able to go to school.  Although she has been able to keep her GPA at a 4.0, she has missed out on making new friends, getting involved with clubs and most of all the things that 13 year old girls do.  She will turn 13 in two weeks and she has been so excited planning her "big" party.  I wish I could be that Mom that is running back and fourth to Cheerleading practice, back and fourth to Dance class, instead I run back and fouth to the Doctors office and hospital for IV treatment.  I don't want to sound selfish when I say that, I just wanted so much more for my kids.  Don't get me wrong I have great kids and that is one thing that I would NEVER change, I just wish I could change the medical issues.  Jordan has had to work so much harder than her peers to get where she is at.  I am so very proud of the beautiful young women that she is turning into.  When we see our child hurting we try to do everything in our power to fix whatever it is that is broken.  How do you fix sickness and illness?  How do I find the answers?  With Jenna's disease being so rare it is difficult enough to find infomation on her illness, let alone how to explain it to others.  At times I feel so alone in this battle.  The panniculitis issue seems to be getting worse no matter what we do.  The Doctor pulls back on the treatment and her labs go up, she develops more "spots", he gives her more meds and she is sick all day long.  When is it enough?  I find myself asking..."Why me? Why Jenna?"  I wish someone could answer that question for me.  I know that there is so much sadness in this world and that we need to find the good in everything we do, but at times that is difficult for me to do.  As for the schooling issue for Jenna, she will have the same homebound teacher that she had last year so that is going to make things so much better for her both educationally and emotionally.  My Wish for her would be that she would feel better and be able to keep up with her peers.  She has lost her childhood to dermatomyositis.  It has been a long 7 years since her diagnosis.  She was so little and sheltered from the world.  Things were simple and fun then.  It has been one heck of a roller coaster ride.  I have spent countless nights looking for any new information that I can find.  From what our Doctor has told us, there are not even 30 cases of panniculitis in the country.  That doesn't leave us much to go on.  Believe me whatever info is out there I have found it!  We will continue her weekly infusions and go every few weeks for IVIG.  Her oral medications have changed a bit, but for the most part have been the same since the panniculitis dx in January 2010.  I pray that we will find something that will work and get this issue under control.  I know that I don't write much but I will try to update a little more than I have been.  I appreciate all of the support that you all continue to give to me and my family.  Without the love and support it would be so much harder to deal with.  Thanks I will update soon.

1st day of Summer brings New Hope

It has been a while since my last check-in.  We have very busy running to the hospital every week for Jenna's treatments.  Things are getting a bit better, I say that with such hesitation as I hold my breath LOL.  Jenna seems to responding well to the new protocol and we are happy that things have been "good" for the past few months.  Don't get me wrong we are not out of the woods yet as the fire is at a slow burn.  Her labs are still elevated and are being watched.  Since the Doctor added the Cyclosporine her panniculities spots have looked a bit better.  As I watch her get older I can't help but be so angry that this disease has taken her childhood from her.  She has been sick for as long as she can remember.   She is not the same "little girl" that was diagnosed all those years ago.  She is still getting the IV Solumedrol & IVIG but is on no oral steroids!!!  She was able to attend Camp Boggy Creek again this summer so that has been a total boost emotionally for her.  After being on Home bound school for her 6th grade year it will be a week that is so needed for her mentally.  I miss her every minute that she is gone, but I know that she is in the greatest of care at camp.  I have not made a decision about seeing another Doctor yet, I am going to wait until we see where she is at the beginning of July.  It is just so much to "start over" with a new Doc and having to go through all the info from the past 7 years...it is just too much.  I have tried very hard to have a positive attitude through this long journey, but there have been those days that I felt like giving up.  This has been a crazy roller coaster ride and when I look in my daughters eyes it is because of her that I keep going with purpose through all the dark days.  I pray that there will someday be a cure for JM so that no other child has to suffer.  I have grown so much not only as a Mother, but as a human being.  I hope that I can be half the person that both of my girls are.  I think that when a child has an illness it changes them some how.  It makes them softer, it makes them notice things that so many of us take for granted.  It makes them process things differently.  They are gentle souls that have touched me in a way that no words can really describe.  My wish for this summer is that we can continue to show some improvement  and that my Jenna will be healthy enough to be back in school full-time come Aug.  I will keep you all posted on her progress and how things are. 

New Year-New Treatment

Hello Again, I  know that it has been a while since I last posted, but things have been a bit crazy in my world.  Jenna's panniculitis issue has not been resolved.  She has been having a difficult time with this issue.  I can't believe that it was a year ago that all of this started.  She now has about 16 panniculitis spots, and lipodystrophy has started in some of the larger ones.  It is so sad to see her in pain.  I would do anything to take it away from her.  We have started a more aggressive treatment with the hopes that it will help and solve this problem.  She is now taking cyclosporine 2 times a day and they have increased her IV solumedrol to every week.  She is still getting the IVIG every three weeks. 
When I sit and think about how long she has been dealing with all of  these issues it breaks my heart...she has spent her childhood in and out of the hospital for the past 6 years.  I sometimes wonder what my life would be like without this illness?  There are so many things that I wanted to do.  Please don't mistake this as me being selfish because that is the last thing that I am.  I will always put others before me...sick or not!  There are just so many adjustments that have to be made when you have a child that is sick.  I sometimes feel like I am alone with the pain & hurt that I feel, but I know that is not the case because I have so many people that care about me and my family. It's just they really don't know how I hurt or what I feel inside.  I feel dead inside at times and it takes everything that I have to get myself going.  It is because of my kids that I keep going.  I want so much for them in life.  I want them to be happy and healthy and reach for the stars because nothing is impossible.
I am greatful for everything in my life I just want Jenna to be better.  I want her to be able to run and play without pain.  I want her to feel comfortable with herself.  My kids are the best thing in my life!!!  These next 8 weeks are going to be rough for Jenna and I give her so much credit she has been so strong through all of this.  I am so proud of her for the way that she has been dealing with everything  that she has been going through. I really think that she will be better off once the port is put in next week, it is just that I didn't want it to come to this.  I will keep you all posted.  Thank you for all the love and support that you give to me and my family.

A Mother's Wish

As we come into the holiday season my wish would be for my child to be better...for our family to stop hurting emotionally & physically.  These past 9 months have been some of the most difficult months that I have had to go through.  It seems like we get to the point where we think that things are better then we seem to take a giant step backwards.  Jenna has been back on the IVIG treatments and they seem to be working for her right now.  Her labs are still very much elevated.  She will be back in the hospital next week.  It should be interesting to see what her labs show.  I wish that I could make this all go away for her.  She has tried to go back to school but we have found that even the half day a week that she has been going is taking alot out of her.  She took a picture of herself the other day sent it as a text message to me...when I got the message I wanted to cry.  They say that you can tell how a person feels by their eyes...her eyes looked so sad.  I am sure that she wasn't feeling all that sad, but her eyes told the story that is for sure.  I want so much for her to feel better.  when she gets up in the morning I think to myself..."maybe this is the day that she is going to be better?"  I try to plan things for her that will take her mind off of things, but when I do, I have to be aware of the fact that she is not able to walk very much.  Think about things that we do in our daily lives that involve walking...I can't even bring her with me to the store before she starts complaining that her legs hurt and that she is tired.  I know that she wants to do so much, then she realizes that she is not able to.  It not only makes her sad, but it just kills me to see her like this.  My wish for this holiday season is a wish that any mother with a sick child would ask for...I want my daughter to be well, I want her to be happy and healthy.  I would trade anything for her health and happiness.  Please keep Jenna in your prayers this holiday and just maybe we can have a miracle of our own. I hope all of you have a wonderful holiday season.  Please take a moment to remember what the real meaning is this time of year.  Thank You to all that have been there for our family I appreciate each and every one of you.  God bless.