Hemophagocytic Lymphohistiocytosis (HLH)

Where to begin...
Let's start all the way back at the beginning...

Justin "Cole" Alison was born on April 6, 2011.  8 lb. 12 oz. of pure perfection.  As soon as I saw him, I was in tears...he was perfect from day 1.  We finally got to come home 3 days after he was born & everything was wonderful...for the time being.

When Cole was 5 weeks old (May 2011), he started with a very bad fever on a Saturday.  I called his pediatrician and she said to give him tylenol and to keep an eye on him.  His fever kept spiking, up to 104 at times, so I called her the next day and she said that Monday to bring him in first thing in the morning.

On first evaluation of him, she said he had a terrible ear infection.  She put him on amoxicillian and a pain ear drop.  After a few more days of a terrible fever, he started getting a horrible rash everywhere.  It started on his face then moved everywhere (it's actually just going away).  I brought him into the ER (his pediatricians orders) & the ER dr. said that he was having an allergic reaction to Amoxicillian and put him on Zythromax. 

A few days passed & his fever & rash persisted.  I brought him back to the same ER (his pediatricians orders) & she said to tell them that some type of bloodwork NEEDED to be done.  We saw the same ER dr. as before and his words were "It's GDing stupid to have any type of bloodwork done on a baby this young.  Go home his fever will go away once his antibiotic takes affect."  We left that night thinking..."Ok he's a dr. he knows what he's talking about".

The following day, I still had a gut feeling that something was wrong.  My mother-in-law found another pediatrician in Slidell, LA that would see Cole ASAP.  I remember walking into the drs office and then it sort of became a blur.  We went to the back with the nurse telling us something was wrong because he's too little for this.  When Dr. Braudt finally saw him, he immediately told us we were going to be directly admitted into Ochsner Hospital in Slidell, LA.  He was worried about things like Kawasaki Disease and Leukemia.

We went directly to the hospital, where Cole was poked here and there so many times that I lost count.  I was worried to death because we just didn't know (& that became such a familiar feeling until he was finally diagnosed).  After his test results came back, they stated that Cole had adenovirus & hepatitis.  They started him on so many medicines that I can't even recall them.

After a week and a half of treatment and various drs on his case, they still had no answer for why his body wasn't totally responding.  An infectious disease dr came in on his case and finally told me about 11 p.m. one night that he had no answer.  That our best bet was to transfer to Children's Hospital in New Orleans, LA.  I agreed almost instantly and the following day we were in an ambulance with my family behind us to be admitted into Children's Hospital.

Our stay at Children's Hospital was more than a blur.  I barely remember dr's coming in and out.  I just kept thinking why him...why my child...what did we do to deserve this.  I wanted answers and I wanted them now, but it seemed like I was never going to get any.  People would call daily to ask for updates and all I could say was I don't know...they don't know.

Dr. Hescock was involved on Cole's case.  He then got a rheumatologist involved to test for Kawasaki, Lupus, etc.  When all those tests came back negative they finally turned to the Hemotologist, Dr. Prasad (who is an angel on earth), to help us.  They went back and forth for awhile, but when Cole was around 10 weeks they finally said "Yes, HLH."

Even though I was so happy to finally have an answer, I don't think that was the answer I wanted to truly hear...I don't think that was the answer that I would hear.  I just knew this was a fluke accident, that nothing was wrong that he'd be fine, but my child was sick.  Sick with a bad illness that could result in Death if not treated.  Death...my child...Cole...wow...I was scared more than I have ever been in my entire life.

I'm only 21 years old and I have been married 1 year this past November and my first child...our first child...our pride and joy...was sick.

The call we got that day from Dr. Prasad came as a huge shock.  I remember just saying "Really, are you sure?" & she just kept saying it's going to be ok.  I actually hung up with her at first because I was in shock, but called her back to ask what was going on...I was lost.  I called my husband hysterically.  He rushed home to find me in a daze.  Before I knew it all of our family was over.  I stayed in our bedroom most of the time just thinking Why us...Why Cole...Why does he deserve here...Why??!!??  I asked myself that more than I can count.

At 12 weeks, Cole went into Children's at 5:30AM to finally get his broviac line.  This was heaven sent because I was beyond tired of the sticks...I hate seeing him cry & having to hold him down to stick him.  Finally a few days later chemotherapy was started.  We've been doing chemo now for months and Cole's levels each week have been outstanding. 

We were finally told about a week ago that his lifesaving Bone Marrow Transplant will take place in February or March.  I'm mentally and physically ready for this & I know that Cole is too.

Throughout all of this our relationship with God has become so strong.  He has given me the strength that I need to withstand life daily.  People don't understand how hard it is to have a sick 9 month old.  He constantly is taking medicines (12 medicines daily) & it's a non stop thing.  He constantly shows me how to be strong though & if a little baby can withstand this then that's ok I can do whatever I'm faced with too! 

"Being Strong Does Not Mean Avoiding the Truth.  It Means Accepting It, Learning About It,  & Dealing With It Head On"

-Cole's Mommy