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.

The Emotions

There have been so many different emotions...the ups, the downs, the happy ones and the sad ones.  When I sit and really think about the "emotions" it brings a smile to my face, but it also brings tears to my eyes.  I have to believe that God has a plan for me and my family.  When I was growning up I would think about how my life would be.  I always knew that I wanted to be a Mother.  We all know that there is no such thing as the  "perfect" life...me I just wanted a happy life.  Don't get me wrong I am happy in my life and there is nothing that makes me happier than my children, but I never knew the road I would travel would be such a hard road.  When I pictured myself as a Mother I saw the mini van, the dance classes, the soccer practices...what I didn't see were the hospitals, the Doctors appointments, the medications and the amount of energy that it would take to raise two children with two very different medical issues.  I know that I am not only a better Mother because of these issues, but I am a better person.  I try and look at my life as a card game (maybe not the best example)...This is the hand that has been given to me and I can either play the game or fold and walk away.  I would never walk away from the life that I have ( I've thought about it at times LOL) my girls have given me more love than anyone could ask for.  As I go through the day to day routine I don't give the "emotions" much thought...it is when I am driving to the hospital, driving to and from the Doctors, spending time in the hospital, it is when I open the bills in the mail and have to figure out how I am going to pay for not only the Doctors and hospital bills, but the medications that go along with having a child with a chronic medical condition. 

I have been blessed with the people around me in my life.  They say that "it takes a village to raise a child"...they were not kidding.  I could never do what I do alone.  I would of lost my mind by now that is for sure.  There are times when I need all the help I can get and other times when I can weather the storm alone.  Where would any of us be without the help of others?  Even with all the help that I have had over the past few years, I still feel so much alone at times.  I know that people can say that they know how I feel, and they understand what I am going through, but unless they have walked in my shoes, they really have no idea.  We as people want to be there to support our loved ones no matter what. 

Last week I had to take Jordan to Shriners hospital for her check-up.  We have been going there for the past 15 years for her orthopedic treatment and all of her operations.  I have had so many different emotions with her.  I can remember the day that the Doctors told us that she had Cerebral Palsy...that day was full of so much sadness.  Would she ever be able to walk?  How would she take care of herself when she got older? What am I going to do? How did this happen?  Why is this happening?  I had so many things running through my mind that day.  That seems like yesterday.  Here we are 15 years later and my daughter is not only walking, but she was told that she no longer has to wear her braces on her legs ( AFO's or ankle foot orthotics)!!!  She has worked so hard to get where she is today...all the years of physical therapy that she had to go through and all the operations that she has had to go through.  I know that going through it for me emotionally was very difficult, I can't even begin to think of how hard it was for her.  It is so hard to see your child in pain and there is nothing that you can do to make it any easier for them.  One thing I have never done to either of my kids was treat them differently due to their illnesses.  Don't get me wrong, I feel bad because they are in this situation, but I never what them to feel like someone owes them something just because.  These days my heart just breaks for my Jenna...she has been "sick" for as long as she can remember.  It gets old after a while.  We feel like we take 2 steps forward and 10 back!  I've cried more these past few months than I have in the past few years.  I want her to be happy & healthy and do things that other 12 year old girls do.  How many of you know a child that can start and IV and take the IV out, run the IV pump machine and give orders to the nurses?  I am sure not to many of you (except for all my other JM Moms out there)  I see her sleeping at night and pray that tomorrow will be a better day, that she will feel a little bit better and be able to do a bit more.  She has been on home-bound school since the beginning of the school year.  She went to school one day last week for a half day and it took so much out of her.  She is going to try and go two mornings this week.  All I can do at this point is take things as they come.  I have stressed myself out so much and I know that is not good for my health...easier said then done that is for sure!! LOL 

I just wanted to check back in with everone and fill you in on things that have been going on and how I have been feeling these days.  Thank you to all of you that are there for me, that listen to me on the good days and the bad days.  I will continue to keep you updated on the status of Jenna's condition.  Stay strong!

The ER visit

On Aug. 20th we took Jenna to All Childrens hospital ER.  We had not even been home from Boston a week and we were right back in the frying pan.  I had never seen these spots turn so quickly before and it had me very concerned.  She was feeling so badly and was so tired.  Here I was thinking that we had gotten a bit of good news from the Doctors in Boston, but there we sat waiting for yet another Doctor to come in and gives us his/her opinion.  I think that I should of gone to medical school with everything that I have been through with my two kids...it sure would of made my life a bit easier. LOL.  We were seen by a few Doctors that evening and they were all so interested in what Jenna had...I'm sure they'll never see it again.  She is one of the few patients that has this panniculitis complication and from what we have learned to date...there are not even 30 cases in the country.  They did admit her that evening and started her on IV treatment...1000 mg of solumedrol and then the IVIG would start.  The IVIG is given very slowly so that there are less side effects and it takes about 13 hours for that to run ( 6 big glass bottles) Once we were in our room the Doctors kept coming in to examine Jenna.  I was so suprised at the number of them that came in and out that night.  We had seen two ER Physician and one resident before going up to her room.  Once there we had visits from a couple more residents and the hospitalist.  The next morning we saw another resident and the Pediatrician that was on call, then her Rheumatologist came in and he had a resident with him.  I can never say that we didn't get attention from the staff that night.  It was no suprise to learn that her labs were all out of wack.  The Sed rate was even more elevated than before, the crp had gone up and vonwillebrand factor Ag was high as well.  Her Doctor spend alot of time answering my questions and went over her "new" treatment plan.  We would be going back on all IV meds (IV solumedrol & IVIG) he would increase her cellcept dose from 1000mg to 1500mg per day, the prednisone would stay at 15 mg per day, naproxen would be 750mg per day along with the lansoprazole 30 mg per day, fluoxetine 40 mg per day, calcium, and vitamin D.  We were back where we had basically started from.  It is like taking 3 giant steps forward and 10 back.  It has taken it's toll on me, I can't even begin to think about how she feels.  Never feeling good, never having the energy to just be a kid.  This was the point that we also decided to do homebound schooling. The Doctor thought that it would do her some good to get the rest in the hopes that it would help her get better.  After everything that this kid has been through she still has the ability to laugh.  While we were waiting for the nurse to get her discharge papers together, I noticed that Jenna was playing with her IV...well, what I thought was playing.  Actually, she was removing her IV!  I was so suprised & I think that the nurse felt the same way, she said to Jenna could I check to make sure you got the whole thing out.  Sure enough she had taken that IV out and had cleaned the arm and put a band-aid on it.  Kids do the craziest things sometimes.

The next two weeks would be about Jenna resting.  We went back on Sept 3rd to get her Iv solumedrol treatment and have her labs done again.  I knew that she had been a bit better and her panniculitis spots were looking better than they had the week before.  I guess when they say..."never judge a book by its cover"  they are right because when we got her labs they were higher than they had been the night of our ER/hospital stay.  How could that be?  They had increased all of her meds what were we going to do now?  Her Doctor came over and saw her while she was in the infusion center and had said to just keep the meds at the dose that they were at until our appointment with him.  I sit and watch Jenna and she just amazes me the way that she acts and the way that she speaks to adults.  There are no better patients than kids. They don't hold anything back, they tell it like it is, and they are not afraid of being wrong.  She has the best nurse ever at the infusion center.  They have beome such good buddies.  I am sure that her job is not fun all the time due to the amount of sick kids that she sees, but I know that she has a very rewarding job, you can see it in the kids eyes when she walks into the room.  Jenna has had a rough road but I can at least be thankful that we have the medical staff that we have, they are all wonderful.  The home schooling is turning out to be a good decision on Jenna's part.  She has a wonderful teacher and she is getting all A's.  She works well one on one.  Sometimes in a large group of kids she lets her mind go and doesn't focus on what the topic is or what they are working on.  I hope that maybe by the end of Oct. she wil be able to at least go to school 2 days a week.  I know that she misses her friends and the social part of going to school.  Most days she is too tired to really care, but I know that if she had the choice she would be there in a heart beat. 

We had to go back on Sept. 15th for another infusion and to see her Doctor.  Her infusion went well and they did another set of lab work.  We had our appointment with her Rheumatologist and again he decided to change her meds...again!  Now he has taken away the cellcept and the IVIG and is going to start to lower the oral steriods dose...WHY???  her labs were so screwed up two weeks prior, why would he do this?  She has no new spots at this time, just the same 12 or so that she has had for the past few months.  This is the part that drives me crazy.  Not that I want her to be on all of those horrible meds, but the last time he took some of her meds away, we ended up in a crisis and had to be admitted to the hospital.  I am not a Doctor, but I am her mother and I spend every second of every day with my child and I know when she feels good and when she feels bad.  We are going to have to see where she is in a few weeks and I can't wait to see what the labs showed.  That will be the most interesting to me.  If things are up, then who knows where we go from here.  The biggest problem I think in treating this panniculitis is that it is so rare and patients don't respond the same way to treatment.  I just have to have faith that things are going to start to get better for Jenna and that she gets to feeling better soon.  I am now up to date with her current treatment.  I hope that I have not confused any of you.  To my JM family...I don't know where I would be without you all.  I am so happy that you came into my life so that we can share our stories with each other.  Nobody could ever get through this alone.  We all wish for the day that we can find a cure so that no child has to suffer.  To my family and friends that have been there for me...Thank you.  I know that there have been times that I just breakdown and cry...thank you for listening to me and being my support.  I will keep you all posted and up to date.  Until next time...please remember that life is very short and we are here for only a short time.  Remember that PEOPLE are the #1 thing in our lives, they are the ones that get us through the bad times, the sad times, the happy times, and the good times!!!!