Trusting the Lord

October 2011

Trusting the Lord ~ seems pretty easy doesnt it?  I felt like I did, until my trust and faith was tested.  In 2007 when my world was turned upside down, that is when I learned what it really meant to trust the Lord.  Trusting Him means giving up all control.  For me it was a little easier then it was for Bryan.  Bryan tends to be in control of everything and this was something he had absolutely no control over at all. 

I read once, just before she went into the hospital that first time, this millionaire stopped, pick up a penny and paused for a moment.  When the couple that was with him asked him why would he stop for just a penny when he had all this money, his reply was that it reminds him to always trust in God since it says on it "in God we trust".  Since that day, whenever I see a penny ~ I stop, pause and pick it up.  I keep a jar on my counter with the pennies i pick up and its a constant reminder of how I need to ALWAYS trust Him.  I found that every time Emily was going to have a procedure done or new results were going to be coming in, i would find a penny and say a little prayer.  Never did I realize how much my trust was going to be tested again just a few short years later.  I found this as a good testimony to the staff at the hospital to tell them we stay calm because our faith and trust in OUR God is what keeps us going ~ HE is the one in control NOT us! 




I do feel that morning on 9/30/10, when Emily called me that it was actually the voice of God, that lifting her into the tub and out and then getting her into her room, it was HE that helped me.  There is honestly no way I could have done this on my own and if you would have seen how Emily was that morning, you would honestly believe it was the voice of God as well!

At Disney World waiting for Aladdin & Jasmine ~ Benjamin

Another area that I feel I need to give complete trust over to Him is when it comes to Ben.  Although there have been numerous genetic testing done on Emily, and so far everything has come back indicating this is NOT genetic (PTL!), I still worry about Ben.  Any little cough he gets, i feel my heart speed up a little, any little runny nose he gets, the little bit of fear sets in.  I just have to trust that everything is going to be ok and that I can handle whatever the Lord has in store.

The other day when I wrote about loss ~ when Emily was in ICU it was very stressful not knowing what I would be walking into the next morning.  I would walk in with my backpack filled with books, my snacks and soda that i would sneak in and of course my credit card for meals that day.  I would sit and watch Emily and pray ~ alot!  One prayer i would pray though is that if the Lord took her, please let it be after she was saved.  See, I knew she hadnt asked Jesus in heart yet.  I couldnt bare the thought of losing her, knowing she wasnt saved.  The Lord continues to heal her and the day after Mothers day in 2011, she asked Jesus in her heart.  It was another area, where i just had to give all control over to Him ~ trust that He would heal her so He could also save her!


As I sign off today, I heard (i believe from Joyce Meyer) that before you go to bed and pray tonight, instead of immediately asking Him for something ~ why dont you immediately thank Him for 5 things that happened today.  I try to do that every day now.  It honestly makes me more aware of things that I have seen Him do throughout the day that maybe I hadnt paid attention to otherwise.  

Do I feel I am strong enough to handle what the Lord has in store for me and my kids lives ~ honestly, I think HE thinks I am stronger then I am, saying that, I will continue to trust and when a "storm" comes, I will be there on me knees praying and trusting that this is HIS will and plan!

So, what are you thankful for today and what are you being tested on to give up complete control and trust over to Him?  Once you do, you will be lost in Him forever! 

Dealing with loss & lessons Ive learned from HLH

Easter 2007 ~ 3 years old

When you think of loss, you think generally of death. For me, dealing with loss took on a new role when Emily was sick.  When she came home from the hospital in 2007, she was a different size. She went into the hospital weighing 26 lbs (and then went down to 19) wearing a 24 months or 2T...when she was released she was weighing close to 40lbs and could hardly squeeze into a 3T elastic waisted skirt.  Her Easter dress that year that hung in her closet with tags on it ~ was a 2T, because she was getting bigger weekly, I found a 4T dress for her that fit a week before Easter...by Easter i could barely do it up.  She continued to grow and by summer (June/July) her cute little bikini's no longer fit, her cute tank tops no longer fit ~ I had to shop.  Most woman would love this, I however, found it torture.  How do you go shopping for your 3 year daughter who was wearing a size 6 in girls for skirts and shorts and a size 9 - 12 for tops.  It was heart breaking.  I felt cheated, like something was stolen from me.  The cute outfits that you see hanging in Gymboree for a 3 year old no longer fit my daughter.  It wasnt her fault by any means. I felt a loss.  I was cheated out of those years in a weird way.  All the nurses and the Child Life specialist were always telling me "dont worry, she will go back down".  Never believed them.  I honestly thought they were saying it "just to be nice".   Just to make me not worry.  About 9 months after she was off the steroids, she was finally down to a "normal" size for her age.  Thats great and I cried the first time I was able to buy her a skirt that was a 4T and fit her because she was in the size she should be.  Every year I deal with the same emotional roller coaster when I change out her clothes from summer to winter and back again.  I wish I could say it gets easier but it doesnt.  The heartache of trying to find age appropriate clothing for a 7 year when she wears clothes in sizes for a teenager is nearly impossible.  Thankfully as the steroids are now down to 2.5mg (started at 60mg), I am seeing her face starting to slim down a little and her stomach is getting smaller.  She still has to wear a size 14 but one day she will be smaller.  I know some of you are probably thinking how selfish i am and is really the size of clothing or her size really that important....its not!  Whats important is that she is here.  But imagine this for a minute.  Your daughter wants to be Cinderella for halloween.  You would simply go down to your local store or buy online a costume in the size she is wearing right now.  Simple, nothing to it.  For us, its not simple.  Imagine for a moment that nearly everything your daughter decides she wants to be for halloween they dont make in her size.  Your daughter can read and says "it says for ages 7-10".  She is right - it does say that but it wont fit her.  Imagine your daughter having to "settle" for some costume just because its one that will actually fit and look age appropriate.  Thats what we deal with, not just for halloween costumes, but for EVERY piece of clothing! It breaks my heart to always have to say "it wont fit"

Summer 2007 ~ Emily's biggest. Emily 3, Austin 10

One thing I have learned from Emily's illness is to stop judging people.  I admit, I used to be one of those people that if i saw someone over weight (I honestly have no room to talk here), I would be thinking thoughts...to myself, never making a comment.  If i saw a child that looked overweight, again, my thoughts always blamed the parents.  I learned firsthand, that a child or an adult for that matter, can be overweight for many reasons.  My child looked morbidly obese and I had ADULTS come up to me & telling me to stop feeding my child so much.  I had adults come up to me and make comments about her facial appearance in the middle of the stores. (Because of the steroid/chemo combo, it made Emily grow dark hair all over the place, including her face).  I learned at that time, you can NOT judge "a book by its cover".  You can not judge someone by their looks.  Because of this, I tend not to notice people anymore by their weight or by what they look like.  I think this has been a huge learning experience for me and something the Lord really needed to teach me.

So next time you catch yourself shopping for your daughter, buying her that adorable little princess outfit or tutu ~ dont take it for granted, enjoy and cherish every moment that goes into it! Also, next time you catch yourself thinking a negative thought on the way someone looks, remember your not perfect either!  None of us are!

Emily meet HLH - Part 2

Picking up from Thursdays blog (and this is REALLY long so i apologize) ~ 
Things were going great after she was taken off the chemo.  Sure she would have these weird, unexplained fevers...low grade (99 - 100) but she was acting just fine.  She was playing with no questions asked, eating like any other child but she just had this fever.  It would last 1-3 days and on school days...give her a little Motrin and she was good to go!  No one was the wiser that she had this little fever.  Unbeknown to us, this was a sign that the disease was acting up.  This went on for a year - on and off.  In May of 2010, Emily was in Kindergarten, she started getting a swollen gland.  she had a little cough but nothing major and again, a low grade fever.  Given her (regular) doctor seemed to be OVERLY cautious by always threatening to send her back to the hospital if her oxygen level was 96 even,  I opted to seek out a new pediatrician.  I wasnt going to be all the way upfront with her at the beginning because I wanted Emily to seek "normal" help.  Her doctor at the hospital insisted we treat her as a "normal" child and since i didnt feel she was getting medical attention as that, i sought out a new one.  This doctor was so sweet, a little older but super sweet.  She did a strep test on her and gave her some medication and said it should clear things up within a couple days.  Well, after 2 days, her glad was swollen twice the size and now she has a fever of 102!  After going back to see her she sent us to the ER.  There they started doing labs on her and getting her medical history and everything that comes with going to the ER.  After waiting there for what seemed to be forever, the ER doctor pulled the curtain and asked to speak with us privately.  My stomach in knots wondering what could possibly be wrong...its just a swollen gland.  He took us to the desk and said he got the lab results back and just a quick look he thinks her disease is back!  I could not believe what i was hearing.  Really?  I mean this is 1 in a million to even get it and when its infectious you do the treatment and then your done..your healed...you go on with life as normal!  Bryan and I went back to our "room" and pulled the curtain and began to cry...trying to not allow Emily to see me because I didnt want to worry her but all i kept thinking was Lord, I cant do this again!  I am NOT strong enough to handle this and now that  i have a baby!  I rode with Emily in the ambulance...again..to Childrens as Bryan followed us there.  They admitted us once again but this time was different. After a few doctors saw her, we saw a surgeon.  This was different and a doctor that we havent seen ~ considering we feel as though we have seen someone from every area of the hospital almost!  I believe they did an ultrasound and said that they would surgically removed it considering they have no idea what it is.  When its out, they would then test it for Lukeumia and Lymphoma to rule those two things out.  They said the surgery would only take about 45 min and they would cut in the fold of her skin so when it healed it wouldnt be too noticeable. Surgery day came, Bryan took the day off and waited there with me and we waited and waited and waited.  I seem to remember it took about 2 hrs before they came to tell us anything.  They sent her back up to her room and we met her there.  She had a draining tube coming from her neck and she was in so much pain.  She is so strong though!  she did NOT like the test of the medicine they were giving her so she opted to deal with the pain instead of take the medication.

The next day, they came and took the tube out.  They said she was doing wonderful and they would have the results back soon.  They did say the surgery took longer because it was the size of a small apple and it was in the middle of the main veins in her neck which made the surgery more delicate.  A while later we rec'd the news ~ NO lukeumia and no lymphoma however, it was a new disease called Kikuchi Disease! Ironically this is usually found in Asian woman - 20 years and older.  Well Emily did not meet either of these however it is the Histyocytic family ~ so again...its her disease!  After spending about 9 days in the hospital things were great and we were sent home!

Emily returned to school for the last few days of school!  We started noticing though that her eye lid (same side as her surgery) was sagging a little.  We didnt think to much of it until Fathers Day (just a few short days after school was let out) when her eye lid was sagging so much that it looked like it was half closed!  This was obviously concerning and moreso because we were planning on leaving in just about 3 weeks to go to Disney World!  The next morning it wasnt any better.  My parents came over, my mom stayed with Benjamin and my dad went with me to see the surgeon.  After seeing him he didnt like it and thought maybe it was something where she should have an MRI done.  First he sent us to a wonderful Opthamologist .  The drive was 15 min.  In that short time, her eye lid went back to normal but now her eye was off track and she was now seeing double.  We were sent back to the hospital for an MRI.  Because Emily has to be put completely out for one and she couldnt do it with just plain sedation, they opted for a a CAT Scan but admitted us so we could get the MRI done the next day.  The scan showed things were fine but still wanted the MRI.  After being in the hospital for 12 days, canceling our trip to Disney World and postponing it to December, after seeing all the Pediatric Neurology team and then onto the Chief of Neurology for Adults, after videos and pictures were taken of her to be presented at the Case meeting they were having, her doctor (who she sees regularly) said what he felt.

Steroids!  She was back on steroids!  So July 2010, she started back on steroids and started a 3 month course of IV chemo treatments again.  We were also sent to Children's Hospital of Cincinnati for a second opinion.  

They do feel this is a secondary case of her HLH (which is just as rare) and they are calling it Sarcoid.  The doctors in Cincinnati felt the same after a long 5 hour doctor appt!

The steroids didnt waste anytime showing its ugly self on my precious baby.  My once petite little thing was now getting bigger and bigger as every day passes.  The clothes that were just bought no longer fit, the stares of others are beginning again and I question again, am I really strong enough to do this all over again with her.  

She was a flower girl in a cousins wedding days after her last IV chemo treatment.  Everything went well!  She started school a couple days after we returned and she was loving 1st grade!  Around the 15th or so of September 2010, she developed a cough...no fever just a cough.  Not a big deal.  I questioned myself as to if she should be seen but the fact that she was acting just fine...I didnt give it another thought.  Little did I know what was going on in her body.

September 29th was a warm day...warm enough for her to be outside running around, playing with her friends, wearing her shorts and t-shirt.  It was dinner time and she said she wasnt feeling good.  Strange since she was just playing her little heart out outside!  We felt her and sure enough, she had a fever but this time it was about 101-102.  We gave her tylenol and she went to bed.  Bryan checked on her at night and said her breathing was labored a little but not enough to panic, she had a vaporizer going in her room now for a few days because of the cough so she should be fine in the morning.  I said if she had a fever in the morning I would be taking her to the doctor.  Morning came, Bryan checked on her before leaving for work.  He reported back that her breathing was labored and that i should take her to the doctor that day no matter what.  My alarm was set to go off in an hour...


At 7:00 am on September 30, 2010, my world as I knew it changed!  I heard her get up and I laid there because she always liked to "wake me up", I heard her turn her nightlight off, go into the bathroom and call me.  As soon as she called me, I knew she was throwing up.  When I got to the bathroom, how I would have given my right arm to have her only be throwing up! She was sitting on the toilet and just looking at me.  I honestly thought she was still sleeping and tried to wake her ~ even to the point of gently hitting the side of her face.  It was almost like she was in slow motion and when she looked at me ~ it was as though the looked thru me.  She had lost all control of bodily functions so i had to somehow get her in the tub to get her cleaned up and clean the bathroom up.  It was hard since she had gained so much "weight" from being back on the steroids for almost 3 months and not to mention, she had no strength.  When sitting in the tub, she kept falling over.  Somehow I managed to clean her up, get her out of the tub and literally drag her to her room.  I managed to get a pull up diaper almost on her in case she "lost control" again and got pants on her.  Her heart was racing and it seemed like i could see it beating almost out of her chest...almost like it was going to explode.  I called Bryan at work and left a frantic message, Ben was still sleeping.  I called Bryan again, this time he answered. I was crying and said how she cant walk, her heart is racing and she isnt making any sense when she speaks.  He immediately left work and I called 9-1-1.  Thankfully we live literally a min. from the police station and they were there immediately.  They quickly took her vitals, got a mini medical history and when they heard she was on chemo and had a rare disease they wasted no time in rushing her to Childrens.  When i say they wasted no time, they literally took her downstairs, put her in the ambulance and left before i got Ben downstairs with a diaper bag, my purse and opened the garage. 


At the hospital we were in a room with what seemed like a million doctors and nurses.  I sat on the bed a little ways from Emily while they worked on her, trying to keep Ben occupied while Bryan was giving different information out and trying to keep Emily calm.  She was so worried about being late for school and what she was buying for lunch.  It seemed like an hour or two and they finally took her to a room in ICU.  They had her sedated and was placed on a vent at the highest settings.  They informed us that she was in septic shock and her body was shutting down.  They also said if it would have been just a few min. longer, she would have been in cardiac arrest.  She was diagnosed with Legionella Disease and Aspergillus Pneumonia. Remember in the previous post when she spent less then 24 hrs on a vent and i now know how the Lord was preparing me for the future?  Well this was the future and she spent 20 days on a vent. 


It was the hardest thing in the world walking into her room knowing we came so close to losing her and now she lay lifeless with more IV's & tubes coming out of her then I ever thought imaginable.  She had around 10 IV poles (it literally covered an entire wall behind her bed) and each pole had about 3-4 medicines coming out of it.  When they had to change places for the IV's they would poke her in her arms, legs, feet...wherever they could find a spot. As the days went by,  they started lowering the sedation medication (although when i would leave at night, they would give her a little more because it would take nearly an hour to calm her down and reassure her i would be back in the morning) during the day and she would open her eyes and try to mouth words.  Ever try to figure out what saying is saying when there is a vent that is taped to there mouth?  It was so hard but all she kept asking for was to go to the play room.  She didnt realize how sick she was. We took lots of pictures so we could show her when she was better just how bad it was this time.  She begged and begged me to buy "Camp Rock 2" DVD and the soundtrack.  I did and she would laugh and insist on it being turned up so load you could hear it nearly throughout the floor.  Her one dr would come in and laugh and sing with her sometimes too!  


She earned the trust of the doctors and nurses and they decided to take the restraints away from her.  They were so impressed that a child this young would just leave the vent in place and not touch it, while as adults, we would be trying to remove it first chance we got.  She received a feeding tube and she was doing well.  The day came during rounds when everyone was in her room and I got there just in time.  Her doctor looked at me and said "well, if she has a good night tonight, tomorrow we will be removing the vent".  I was nearly in tears that she was so much better and better enough to get off the vent.  Bryan and I decided to not tell anyone in case something happened.  The next day, I walked in and they all had big smiles on their faces telling me it was a good night and they are getting ready to take the vent out.  Now, ICU it is a HUGE  no-no to have your cell phones on.  I didnt care, I stood in the hall while they were getting ready to take the vent out, I had Bryan on the phone and the resident looking at me telling me play-by-play of what was happening (I could have been in the room but i wouldnt have been able to handle seeing them take it out). As soon as it was out, I heard a little cry and i heard her say "Mommy" ~ I cried as i had not heard my babies voice in 20 days. Bryan told his boss he was taking a half day and he was up to the room to see her.  Two days later, I received a phone call from the hospital, frantic, I answered it and the nurse said immediately that nothing was wrong but Emily was crying.  I got on the phone with her and she said "they let me pull my tube out and i want cereal".  Her nurse got back on the phone and informed me they allowed her to pull her feeding tube out and that they were moving her to a regular room!

We spent a week in a step-down room, where they were weaning her from her medications from ICU.  This was such an emotional roller coaster too!  So weepy and laughing hysterically the next.  We then were moved up to our favorite floor (5-west) where we saw old friends and it was nice to be "back home" or in a familiar place with more familiar faces.  We spent about a week there and then moved again to the rehab side.


What I didnt realize nor take into consideration is how fast your muscle shut down when you have been laying for so long.  Emily had to learn to sit, stand, walk, ride a bike, get dressed, every normal thing you and i take for granted...she had to learn to do it all over again.  She was doing so well too that they gave her a day pass and we were able to leave the hospital and surprise Grandma for her birthday.  We then went to the mall for a little shopping and then back to the hospital. She did so well that they released us 2 days before Thanksgiving.  It made the holiday that much extra special. Unfortunately, since this was just a couple weeks before our trip to Disney (remember, we postponed it from July to December) we now had to postpone the trip again ~ this time we tried to play it safe and we postponed it for a year ~ December 2011!


The put a picc line in when she was in ICU and she came home with that along with about 8 medications.  We had a nurse come once a week for a few weeks to change the bandages on her line.  She continued to go to out patient Physical and Occupational therapy twice a week for the next two months.  She finished up in January of 2011 ~ a month earlier then they anticipated.  She still takes 8 pills a morning and 3 pills at night.  She is still on the steroid that was started back in July 2010 and hopefully in February she can be rid of that!   


Since this last incident with Emily, we have learned that she will have to remain on chemo the rest of her life.  Any of the other medications, I not sure of right now, but I will be happy if and when we can start eliminating some of them ~ i know Emily will be as well.  Emily is such a strong person, takes everything with a grain of salt and just thinks this is "normal".  So normal that she plays that she is getting a CAT scan in the pool.  It doesnt bother her to have blood drawn, in fact, she insist they do it in the hand because it doesnt hurt as bad.  When kids say mean comments to her about her weight or call her that "bad F" word (F-A-T), she laughs it off while my heart breaks and i try to hold the tears in.  Her strength amazes me and i have learned so much from her.  All of the trials she has faced, she still continues to go on with a smile on her face, love in her heart and a gift of thinking of others.


**Picture was taken just before being admitted back into the hospital in May 2010 for the swollen gland

Emily meet HLH - part 1

Well, today is the day that I open up about Emily and her ordeal.  Today is the day that I become raw and allow you into the emotional roller coaster that we have dealt with since she was 2. Let me introduce you to HLH.

Emily was a "normal" toddler!  Sure she got alot of ear infections but many kids do.  Sure she had her bouts with a cold, bronchitis but dont all kids get sick?  Around January  15, 2007, Emily became ill with bronchitis. She didnt receive any medication and was sent home from the doctor. That was a Thursday...by Monday morning she was worse and I took her to a different doctor.  He did an x-ray and said it was now pneumonia and gave her some medication to take for a week and to come back to see him in two weeks.  By Sunday, she was lethargic & her breathing was scary.  I took her back to the doctor first thing Monday morning and he rushed her by ambulance to Children's Hospital of Michigan. We spent a week there and after several breathing treatments and some IV fluids, she was doing so much better!  We were sent home on Super bowl Sunday ~ only for her to take a turn for the worse.  By Tuesday, she was more lethargic then before and her breathing was beyond scary this time.  We went back to the doctor and again, another ambulance ride.  They immediately were taking blood from her a few times a day, they opted to do a bronchial scope ~ which meant they had to put her out.  This was hard, seeing my little baby laying there and not moving.  She did fine with that but found out she had a staph infection, influenza A and pneumonia.  We were moved to a private room! They did countless x-rays, blood draws and then they did a lung biopsy (she still has 3 scares on her side from this).  Again, nothing new showed up.  It was becoming the middle of February and we were no where closer to finding out what was wrong with her.  She was now throwing up, wasnt eating and had lost 6 pounds ~ not great when you consider she was only 26 lbs when she was admitted! She had had a blood transfusion and was now getting nutrients via the IV. Finally they opted to do a bone marrow biopsy but warned us it would take about 2-3 days before they had any results.  The Lord was with us because not even a few hours later a team of doctors came in and with smiles on their faces said "We know whats wrong with her".  They said it was Hemophagocytic Lymphohistiocytosis".  Ok seriously?  Are you speaking English to us ~ that is what I wanted to ask them.  They had smiles, we had smiles and everything was going to be great because they said they would start treatment in the morning!  

That night, it felt like such a relief to finally have an answer and then I googled HLH.  Bryan was home (on the phone with me) and he was doing the same thing.  Unfortunately, most of the information out there is about the genetic form ~ which is deadly!  This disease is 1 in 1 million that get it!  Usually kids that have this, do NOT live past 6 years old and they also have a 50/50 chance of survival after a bone marrow transplant.  Thankfully,  Emily has the infectious form.  That is good news, however, the treatment wasnt much fun.  They started her on oral chemo and steroids the next day (a Tuesday) ~ she was 19 lbs. By Friday, she was 35 lbs and could barely walk to the nurses station.  That Friday night, she was doing so good and since I was "living" at the hospital all this time, Bryan came to stay with her.  I was still working at this time and I went into work right after i left the hospital.  I got home and into bed about 3:00 am.  By 8:00 am, my world would change.  Bryan called me and said "I need you to come here right away, Emily has taken a turn for the worst and I need you to call your parents and have them call my parents." After getting to the hospital I found out Emily had coded on the floor.  She was unconscience, she had a small seizure and was now in ICU.  When we finally got to see her, I thought my world was about to end.  Seeing my baby just lay there, lifeless with cords coming out of her, IV's and on a vent ~ I thought i was going to be sick.  Little did I know, the Lord was preparing me for what was to come later down the road! She had some MRI's and CAT scans too and it was also mentioned she had Vasculitis (narrowing of her blood vessels in the front of her brain and the side of her neck).

Less then 24 hrs later, she was off the vent and sitting in a chair!  Because of her being in ICU, I could not longer stay with her.  This was especially hard on her when it came time to leave at night.  It was determined that she now had hypertension due to the steroid/chemo mix and she now had to start on blood pressure medications ~ 3 of them! She is a fighter though, because 7 day s later we were on our way home ~ March 16th ~ 2 days before her 3rd birthday! She was sent home with about 10 different medications to be taken daily and multiple times daily.

The follow up appts seemed like it was non-stop and I should have just rented a private room since we were there so much!  We were literally there every week and sometimes twice a week for different doctors appts.  After a couple months, it was now down to just 2 doctors ~ both of which we could see at the same appt. time!  She would continue to have many CAT scans and MRI's ~ putting her out for her "naps" now became a routine for her and "old hat".  

Just a month later, after a follow MRI, her doctor did not like to see that the chemo she was on wasnt doing what he had hoped for.  He switched her to a different chemo but this would be administered once a month but IV form.  This meant on the day of the treatment we would wait for the call to come in when a room was ready.  Then we would go and get admitted, settled in and begin the IV fluids.  Once her urine level got to a certain number they could start admitting the medication to help her stomach, then the chemo, then the medication and then 8 hrs of fluids.  This would sometimes be a very long process....the shortest time i think we stayed was about 16 or 18 hrs!  This went on for 6 months.  Her doctor then put her on another chemo that she would take orally ~ twice a day ~ for 18 months.  Still, continued with MRI follow ups.   

That October 2007, after her last IV treatment, I was laid off and found out I was pregnant with Benjamin about 5 months later!  This threw us a little curve ball as he was unexpected (especially since i have PCOS) and because i could NOT touch the chemo.  Bryan would dispense a weeks worth of medication (14 syringes) on a plate and twice daily i would bring the plate down for Emily to take one!  

In December of 2007, she rec'd a special ~ early Christmas gift ~ no more steroids!  After being on them for 9 months, she is now off all her medication but the chemo!


May of 2009, she was off all medication.  Clinically she was "healed".  Her labs were looking good, we were down to dr. appts about every 5-6 months and we were heading in the direction of thats it!  We reached the end of the rainbow.


But then....
~ check back  tomorrow as I finish the story.  I didnt realize it was going to be so long so I decided to make it a 2 part!   


See you tomorrow 

Resolution or Goal?

Today I was really going to go into dept about Emily and how her sickness started, what has happened over the course of 5 years and where she is right now....but I have just had something weighting on me that i wanted to get out there.  

I know this seems like a weird time to blog about New Years Resolutions considering we are already on the 3rd of the new year...but I still wanted to talk about it.   What do you do?  Do you make a resolution?  Do you stick with it?  Most people make them and only break them and generally, its the first day, first week or by the end of January that the resolution has been broken and there you go....set the new one for the following year.  Because of this cycle that happens every year, I started last year making GOALS instead of resolutions.  Goals seem to be something you can shoot for for the entire year where a resolution seems to be something where if you break it, give up, feel guilt and wait until the following new year to start again.  With a goal, there is no feeling guilty...its an on-going thing throughout the year, something to accomplish and to feel proud of!


Saying all that, I didnt accomplish some of the goals that i set out to accomplish from 2011.  Do I feel guilty ~ NO!  Do I wish i would have tried harder to accomplish the goal, YES!  Here are some of the goals I had set up for 2011

• Be more diligent in my devotions and time with God
• lose weight
• pay off debt
• read 12 books in a year
• be more patient
• stick with the budget

As good as these are, i really only accomplished the "read 12 books", i actually read 22 books this year (and thats starting in July).  I have become more diligent in my devotions and time with God, however, dont we all NEED more time then what we are actually giving?  That will be on my goal list probably forever!  So as i reflected on what i wanted my goals to be for this year ~  it was basically the same...the difference being 1) i am increasing the number of books to 30  and 2) this year I finally feel I am at a place to take care of me.  I feel like this year I can actually set out and accomplish the goals i have set in place.  Although all of them but my devotions  will be difficult for me (because i LOVE my quiet time with God)  this will mean I will have to go thru a divorce with Target, especially!  You know you go there too much when the workers come up to you and ask how your doing! But I will also have some separation anxiety with Visa and Mastercard!  I love my family and my Lord enough to do this ~ that is why I have a good feeling about this year!


So will you choose a Resolution, only to be broken or a Goal, to work at something to accomplish the entire year?
Until tomorrow.....
saved by Him,
Tricia

A day at the spa!!

Wouldn't we all just love a day at the spa after all the CHRISTmas shopping, New Years parties, etc?  Today, I got my "day at the spa".  I know this sounds crazy but today, I got to go grocery shopping ~ ALL BY MYSELF!  I know this doesnt sound like fun, but it honestly was!  It was so relaxing being able to go to the store and not hear "Mom, can I get this" or "Mom, he's hitting me" or simply just chasing my 3 year old (Ben) around.  Even though it took me from start to the end of checking out 1.5 hours ~ it still cut about 45 min. off my "normal" grocery shopping time.  Just shows me that  I spend that much time chasing after Ben, or getting after the other kids or finally giving in and buying a toy ~ that, honestly, they really dont need and it would be in the garbage..broke..in a couple days!  So, thank you to my husband (and TV land for all the football games) for keeping my husband home and the kids so I could have my "day at the spa"!   

To be honest, this actually was really unexpected!  I was on my way to one of my favorite places in Woodhaven  ~ TARGET ~ and when i got there, everyone (including employees) were being evacuated because of a gas leak.  There were police cars all over the place.  I feel this was God's intervention ~ He knew i would spend too much!

This was my day and I feel blessed today!  I have a great husband who, even though he is watching football, didnt mind having the kids home with him and i was able to have a break.  I have some amazing kids, even though they do drive me nuts, especially at the store!  I feel extra blessed for the way the Lord has had His hand on me and protected me in ways i see but also havent seen!   Today I feel blessed to have my husband be "the bad guy" and needing to get after Emily about her medicine.  Its nice when i can get a break from that too!

As I get more into the "blog thing", I will get into more detail about Emily and her life with HLH (obviously since thats the name of my blog) but I wont deal with it every day as even sometimes, this is my way of getting a "break" from her illness!

As I mentioned in yesterday's blog about my cousin Dawn ~ she has an awesome blog going too.  She writes for The Wordsmith Journal and her blog is "You are not alone" ~ honestly, she is really *AMAZING* .  I am adding a link to her site so you can check her out.  You will be inspired by how the Lord moves in her writing and her life.  She has dealt with so much.  She has taught me so much. You will be so moved ~ I encourage you to read it!
http://www.thewordsmithjournal.com/you-are-not-alone.html

So, until next time ~ find what you can be thankful for and count as your "Day at the spa"!
Saved by HIM,
Tricia

The New Year

Happy New Year! 

This is the first time I have ever done a blog, so please go easy on me.  From the advice of my cousin (who is my BFF), she suggested I start a blog.  See, I have a daughter who has a rare immune disease called HEMOPHAGOCYTIC LYMPHOHISTIOCYTOSIS or HLH (which is how I will be referring to it as). My daughter, Emily, was diagnosed on February 2007 and has been dealing with it since ~ she was only 2 then (3 wks shy of her 3rd birthday).  Because of the ups and downs that we have dealt with - with the disease, I have found that i feel alone with it and really no one to talk to.  So Dawn, my cousin, suggested this and maybe it would be an outlet and maybe even some therapy!  

So please come and join this ride with me.  I look forward in sharing Emilys disease and what has happened so far, how the Lord has blessed us and how we continue to make it another day.  I will also share about life in general, so I hope you will sit back an enjoy and see how this new year will be the best yet!

saved by Him ~
Tricia