March 2 - This Day in 2012

This day in 2012 was one of the most profound. I'll take you back to yesterday in 2012 first. Doctors had spent the past 2 weeks tsting Eric for every possible infectious disease there was from Avian flu to just about the entire alphabet and then they said it might just very well be a Zebra... What's a Zebra you ask ? A Zebra is a 'rare' disease. One that may present some common symptoms of other more know illnesses, but in actuality it becomes overlooked because most people have what is common.

The day was different, Karen spent part of the day at the hospital or came up in the afternoon and left with me. We came home Early that evening and I remember how Sunny it was still when I received a phone call from Eric's hematologists Dr.Essex and Dr.Fasan. They both got on the phone and reinforced how they thought we should go ahead and do a bone marrow biopsy again. They briefly mentioned their hunch a few days before... Upon running some additional lab work earlier in the week, results showed that if the bone marrow biopsy did indeed show this macro something or another they think they might have a diagnosis. Now in all honesty I can't speak for anyone else, but I sure wasn't convinced after hearing we had over 50 pages of pathology reports and everything was negative! So0o0o after about 15 minutes or so I said Okay - let's do it! 

So on March 2nd 2012 Eric was prepped to do a bone marrow biopsy on his front left groin. Usually they go through the spine, kind of like an epidural, but Eric was on ECMO and was unable to be turned over due to the fragile nature of it. So about mid morning one of Eric's buddies, a close family friend and co-worker was on his way back to the office after being out in the field and decided to stop in on his lunch break. Of course he too was a bit skeptical about this magic moment. At this time the hospital had been letting us use one of the grieving rooms since we had been there so long. I was talking to Eric's buddy Erik when Dr.Essex and Dr. Fasan came in almost bursting with information. They were so astounded by the findings they rushed to have me sign the paperwork for treatment. So Dr. Essex begins to explain this really long named disease hemo...fag-o what ?? red cells, white cells, eating each other... chemotherapy macro ? huh ? What in the hell is this guy saying - Is this cancer?  He assured me I did not need to know what 'macrophages' were at that time and we said okay. Erik had written down all the symptoms Eric had possessed for this differential diagnosis on a napkin, which I still have if I might add. Dr. Fasan handed me the papers and gave me all the warnings of chemotherapy! So I agreed and signed away once again. At that time pharmacy had already been notified of our need for the chemo and to rush it down immediately on receiving the authorization from me to treat.The doctors left. Erik and I just looked at each other in awe. WAS THIS REALLY THE DIAGNOSIS ? One month after Eric was admitted to the hospital we could finally say he has - well HLH at that point! It took me about a week to say Hemophagocytic Lymphohistiocytosis! So Erik called up the colonel and said he couldn't make it to the afternoon meeting and stayed with me until Karen and Tom trekked back up to temple a little early that night. 

Chemotherapy was started with caution as no one was sure as to how Eric's body would react to it. His previous 10% chance of living seemed to dwindle to a 5..especially after google-ing this disease! The literature just wasn't there. Eric was the first or one of the first to be on ECMO and recieve chemotherapy while on over 4,000 units of heparin  a blood thinner used to keep his blood from coagulating and clotting the ECMO machine.

So here we are 1 year later about to celebrate - odd way to put it, but celebrate Eric's diagnosis and 1 year survival since. This journey has been unimaginable to most, but just another day to us. Who knew was Histiocytosis was? I sure didn't..

We can't thank all of our Temple doctor's enough for working so hard!

So much to do before everyone gets here! Time to go HLH-Awareness-ify everything! Go BLUE!

-Amanda 

This weekend in 2012 - ECMO

 Eric remained medically sedated and paralyzed due to the fragile nature of ECMO. He had been on ECMO for about two weeks- its a machine that filters your blood by directing a tube directly to your heart and to machine that adds oxygen and removes CO2 before sending it back into your body because your lungs cannot help circulate it. For Eric they used a line that went in his neck and out his groin but they had to insert larger tubes so they could increase the blood flow since he's so tall! So he ended up with two in his neck. Because he 'wore out the life' of the machine and to reduce the risk of blood clot in the machine they even switched it out to a new one! He was on full ventilator support which basically opened and close his lungs because there was so much fluid around them and they were so weak. We had no diagnosis at this time.

-Amanda

Sean Fischel, HLH Warrior

Last fall we had the oppotunity to interview with the Philadelphia inquire on our recent experience with HLH. It connected us with the Fischel family of Moorestown, NJ. The Fischel's youngest son Sean had been transferred into Philadelphia Children's Hospital for treatment for HLH. He put up one amazing battle that surpases even my own. He is truly one amazing kid I wish we could have met and gone fishing when he was better. After everything he had been through he managed to get a smile for camera on his moms updates. It was so exciting seeing him travel outside of his room in a wheelchair for the very first time a few weeks back. I remember how much freedom it gave me.
Rest easy little Sean. We will miss you.

In memory of Sean Fischel, age 7, HLH Warrior

October 2005 - January 6, 2013

Here is a small clip from Sean's Campaign that took place in September during Histiocytosis Awareness month where he surpassed his goal of $7,000!

"Our warrior Sean lost his battle with HLH on the afternoon of Sunday, January 6, 2013. He fought courageously for three months and made remarkable strides towards recovery. Many in the medical field used the word miraculous when speaking about Sean. Indeed, he was a miracle child to those who knew and loved him. He will be greatly missed by so many but he will remain in our hearts and souls forever. We have no doubt that this brave boy is now shining in GOD's light."

The Fischel Family is asking that donations made in memory of Sean be sent to 

 Children's Hospital of Philadelphia.

The CHOP Foundation

Lock Box 1352

PO Box 8500

Philadelphia, PA 19178

Donate online here.

Directions to include a note to be sent to the Fischel Family: Check off  'This is an honor or memorial gift'.

Then choose in Memory of from the drop down menu under Tribute Gift Type and type in Sean Fischel below

and the address you wish to send the note to.

Service Information

Friday, January 11th, 2013

12:00 PM

Funeral Mass at Our Lady Of Good Counsel

42 West Main Street

Moorestown, NJ 08057

Gathering immediately following mass at the Moorestown Community House

Older Blogs About Sean

Sean's Journey With HLH

Holiday's With the Fischels



Lung check-up

Today was really long and i'm pretty tired. First I had a CT scan on my chest and abdomen to check my lungs, liver and spleen. Then I had to do a test to see if I breathe ok during and after exercising. 4 hours later I finally had my actual check-up with results.

Overall my lungs are where the doctors expect them to be. The medicines i'm on are limiting the amount of 'good inflammation' that increase healing, so everything will take much longer than it would if i wasn't on them.

The CT scan showed scarring from the spots that started to harden when i was on the ventilator and ECMO. Hopefully they'll continue to heal and soften. It's still hard to breathe big deep breaths sometimes and i get sharp pains too. They were still a little fuzzy in some spots. For those of you just following this is an improvement because i was told when i was on ECMO my lung xray was completely white and its supposed to be black to show air in them not fluid. My breathing test was good. They took my blood and measured the oxygen and co2 and then i exercised and they measured my breathing and heart rate continuously and then they took my blood again. I never needed oxygen help once-so that's good. My spleen is getting smaller, but is still enlarged and my liver is still enlarged. last time labs showed my liver function was okay though so we'll see next week after my labs come back.

The doctor said as long as I continue to do healthy things and don't get sick I shouldn't have to come back for a few months. So I wont have a lung doctor appointment until March of next year.

I also saw some familiar faces and met a new one. Maureen, who's having a baby next month, was one of my ICU nurses that took care of me when I was sleeping (medically sedated). She even donated blood directly to me with the program Amanda set up with the Red Cross when I needed several transfusions a day.It's pretty cool knowing these people worked so hard just to save me.

I'll have some bloodwork done Thursday to test my cell counts and see where I stand with the HLH. I won't have those results until next week. The Humira is helping my arthritis and I feel much less pain and almost normal, but weaker and slower.

Why a big gap ?

There's a huge gap here because during this time Eric was medically sedated and paralyzed. He was placed on something called ECMO. ECMO is basically a process like dialysis, but for your lungs. It filters the blood out of your body and through a tube into an artificial lung machine that is outside of the body and adds oxygen and removes co2 before reentering back into the body.

Thanks
Amanda
(Erics Wife)