Liam's HLH Journey | HLH – Hemophagocytic Lymphohistiocytosis, is a rare disorder of the immune system

Kristy talked to the doctor

Posted on August 1, 2012 by Nana

Kristy’s facebook post:

So I talked to the doctor and this is what they said. If Liam’s bone marrow biopsy comes back that there are no new donor cells reproducing then he will have to have another BMT and if there are new cells of Hunter that we can try a boost but because Hunter is only 9 they would only be able to get enough for 2 boosts for Liam. Unless they put a central line in Hunter and took as much as they needed. That just doesn’t settle well with me there is so much risk in having a central line. So then if the boosts didn’t work they said they would use Noa as a donor. Which would mean a harsher BMT for Liam meaning higher risk of complications. So I have a lot to process yet again and I’m going to talk with the doctors about why they wouldn’t use Hunter again. They would be using ATG this time so I’m wondering if by not using it before was the reason the graft has dropped. This all still feels like a nightmare that I wish I could wake up from, but I’m still hopeful that his graft is stable and if needed just a boost. Please pray for strength I know I need it right now. Thank you

Posted in Hemophagocytic lymphohistiocytosis (HLH), Liam's BMT updates | Tagged child rare disease, Chimerism/Engraftment, Familial Hemophagocytic Lymphocytosis, FHLH, Hemophagocytic Lymphohistiocytosis, HLH | 2 Comments

Faith…

Posted on July 31, 2012 by Nana

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Precious Little Liam

Posted on July 31, 2012 by Nana

Priceless…

Posted in Hemophagocytic lymphohistiocytosis (HLH), Histio Awareness - HLH, Hemophagocytic Lymphohistiocytosis, Photos | Tagged child rare disease, Hemophagocytic Lymphohistiocytosis | 2 Comments

Please pray for Jillian’s Family, she lost her fight with HLH.

Posted on July 28, 2012 by Nana

Jillian Elizabeth Blais, 19, of Samsula, passed away on Wednesday, July 18, 2012 at Cincinnati Children’s Hospital from post-bone marrow transplant complications. Jillian suffered from HLH (hemophagocytic lymphohistiocytosis). Jillian was a 2011 graduate and class salutatorian of Father Lopez Catholic High School. She excelled academically in all areas, earning top honors in her classes, and was a member and leader of numerous academic clubs and associations. She was also a four-year varsity cheerleader for Father Lopez. Jillian had been accepted to the University of Florida and would have started in the fall of 2011. A third generation native of the Daytona Beach area, Jillian attended Samsula Elementary and Creekside Middle, participated in 4-H, and was interested in arts, computers, Disney cosplaying, animals, and theater. She will always be remembered for her joie de vivre, exceptional personality, her drive, her persistence, and her openness to help others. She impacted more lives in her 19 years than many people are privileged to do in a much longer lifetime. Jill is survived by her parents, Lisa and Joe Blais of Samsula; her sisters, Caitlin and Rebecca; grandparents Kathy and Joe Blais, and Sandy and Bob Lloyd; and many aunts, uncles, and cousins. The family would like to thank all of their family, friends, and acquaintances for the incredible support they have received through this past year. The family would also like to recognize the excellent care Jillian received at Cincinnati Children’s Hospital. A Mass of Christian Burial will be held on Saturday, July 28, at 10:00AM at Sacred Heart Catholic Church in New Smyrna Beach. In lieu of flowers, donations may be made to the Jillian Elizabeth Blais Memorial Scholarship at Father Lopez Catholic High School, 3918 LPGA Boulevard, Daytona Beach, FL 32124. Condolences may be shared with the family online at www.lohmanfuneralhomes.com Arrangements are under the careful direction of Baggett and Summers Funeral Home.

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Brothers…

Posted on July 26, 2012 by Nana

Ryder and Liam – Priceless moments

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DAY +439 – Call from Seattle

Posted on July 25, 2012 by Nana

Post from Kristy 10:45 pm

I could write this earlier because I just couldn’t stomach the thought of it. Seattle called Liam will be getting a bone marrow aspiration next week. They said that they are seeing deadly GVHD with giving DLI’s in his situation which I still don’t understand and will be calling tomorrow to talk further about that. The only other option is another transplant. I feel as though I’m drifting between two worlds one of which Liam is healthy and the other of watching him knock on deaths door again. To walk into a bone marrow transplant unit with a child that appears and acts healthy knowing they are going to make them so very sick and maybe they won’t pull through is the worst feeling in the whole world. No mother should ever have to put there child through it. Please pray for strength for all of us. I know we are all going to need it. Thank you

Posted in Doctors Appointments, Hemophagocytic lymphohistiocytosis (HLH), Liam's BMT updates | Tagged child rare disease, Chimerism/Engraftment, Familial Hemophagocytic Histiocytosis, FHLH, Hemophagocytic Lymphohistiocytosis, Histio Awareness - HLH, HLH | Comments Off

This is for my Baby Girl… Love you Mom

Posted on July 25, 2012 by Nana

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DAY +433

Posted on July 25, 2012 by Nana

Post from Kristy: Liam’s graft is still dropping the drs are having a meeting today with the top drs in the U.S. and will let me know what happens next. This is not a good thing. Please keep our family in your prayers. Thank you

Liam is 14 months post BMT

Posted in Doctors Appointments, Histio Awareness - HLH, Hemophagocytic Lymphohistiocytosis | Tagged Chimerism/Engraftment, Familial Hemophagocytic Histiocytosis, FHLH, Hemophagocytic Lymphohistiocytosis | Comments Off

DAY+ 432 – 07/18/2012 – DNA Chimerism Analysis

Posted on July 24, 2012 by Nana

DAY+ 432 – 07/18/2012        DNA Chimerism Analysis – Blood
Derived & naive young  T cells 47%
(CD3+) T Cell                       45% donor origin (55% host)
(CD33+) Myeloid Cells           4% donor origin (96% host)
(CD56+) NK Cells 10% donor origin (90% host)
(CD19+) B Cells                       3% donor origin (97% host)

DAY+ 403 – 06/19/2012        DNA Chimerism Analysis – Blood
Derived & naive young  T cells 52%
(CD3+) T Cell                       47% donor origin (53% host)
(CD33+) Myeloid Cells           2% donor origin (98% host)
(CD56+) NK Cells 10% donor origin (90% host)
(CD19+) B Cells                       2% donor origin (98% host)

DAY+ 367 – 05/14/2012 DNA Chimerism Analysis – Blood
Derived & naive young T cells 53%
(CD3+) T Cell 50% donor origin (50% host)
(CD33+) Myeloid Cells 4% donor origin (96% host)
(CD56+) NK Cells 14% donor origin (86% host)
(CD19+) B Cells 5% donor origin (95% host)

Posted in Doctors Appointments, Hemophagocytic lymphohistiocytosis (HLH), Histio Awareness - HLH, Hemophagocytic Lymphohistiocytosis, Liam's BMT updates | Tagged child rare disease, Chimerism/Engraftment, Familial Hemophagocytic Histiocytosis, FHLH, Hemophagocytic Lymphohistiocytosis, Hemophagocytic lymphohistiocytosis (HLH), HLH | 1 Comment

Lab result… Please say a prayer

Posted on July 23, 2012 by Nana

FB Post from: Kristina
Just talked to Seattle and they will have the results tomorrow and will call me at the end of the day. Please pray for better results I don’t think I can handle bad news right now 🙁