Sunday, January 6, 2013

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

Friday, January 4, 2013

Love For Lana Part2

We posted about Lana's journey with HLH a few months ago and were so excited her brother was a match, but do to complications the bone marrow transplant could not take place, leaving Lana back at square 1- looking for a match. Here is her update. View 1st blog here.

Lana Leake
**UPDATE** My brother was an identical donor match for me. He had a stem cell collection on October 23, 2012, but didn't give enough. They let him go home and rest and rejuvenate for about a month, and brought him back for stem collection. This time, he gave even less. They said it was because of his prior radiation due to prostate cancer and possibly his age. Now they have decided to find another adult donor. If you haven't already done so, please get tested. It is a simple swab test and the collection is given by IV, just like giving blood. Just think, if you are lucky enough to be a donor, the life you save may be a family member, a friend, a neighbor, a stranger, or me.

January 11th: **UPDATE** I went to Morgantown yesterday to hear "the plan". Well, there is not one as far as he is concerned. God has a plan, but did not tell the doctor yet. I have such a rare HL type, they are unable to find a donor. Said they will keep searching, but have already ran a worldwide search. He said the only other alternative would be to have my son be the donor. We will have to go to John Hopkins Hospital in Baltimore, Maryland for a consult. Not sure that it will be successful. I am now more than scared, I am terrified. I have so much to live for and will not go down without a fight.I want to thank everyone for their prayers and concerns. I am asking that you please keep me in your prayers and askiing anyone out there who hasn't already done so, to please, please get tested to be a donor. If not for me, for others out there who are in the same position I am in. Sending love, hugs and prayers to all of you. ♥ ♥ ♥

Lana Leake at PO Box 241, Cannelton, WV 25036.

Wednesday, January 2, 2013

December Labs

The doctors say to take the 'numbers' with a grain of salt. If I'm feeling 'good' or better and not worse --that's most important. These were taken in December but with the holiday Amanda didn't get them updated on our Quest App which is really helpful for any of my fellow HLH family reading this. It's called Gazelle by quest diagnostics and all you do is type in the date you had blood drawn and the doctors name and info and you'll have them on your phone app in just a few days. Then you can view them or fax or email them to another doctor with just one tap!

So my ferritin dropped back down and so did the CRP. They look at ferritin for several things. Ferritin is a measure of iron in your blood and is followed for HLH diagnosis, but my red and white cell counts don't indicate any crazy HLH stuff going on so it's likely attributed to my Still's Disease. CRP is a non-specific inflammatory marker they look at. Last time it was 4 something so this is a step in the right direction.

Just moved down to 6.5mg of prednisone last Thursday an I'm feeling it a little but I'm hopeful it will subside just like it has before so I can move down to 6 next week!