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

Update from Mommy…

Posted on November 14, 2012 by Nana

Tomorrow they will be testing Liam’s graft. They are hoping to have the results back by Friday afternoon. I hope Hunters cells are in there taking over. Thank you for all the love and support, it means the world to me 🙂

Posted in Bone Marrow Transplant, Doctors Appointments, Hemophagocytic lymphohistiocytosis (HLH), HLH, Liam's BMT updates | Tagged child rare disease, Chimerism/Engraftment, Familial Hemophagocytic Lymphocytosis, Hemophagocytic Lymphohistiocytosis, HLH | Comments Off

A friend posted this song for Kristy…

Posted on November 14, 2012 by Nana

Life ain’t always beautiful
Sometimes it’s just plain hard
Life can knock you down, it can break your heart
Life ain’t always beautiful
You think you’re on your way
And it’s just a dead end road at the end of the day
But the struggles makes you stronger
And the changes make you wise
And happiness has its own way of
takin’ it sweet time[chorus]
No,life aint always beautiful
Tears will fall sometimes
Life aint always beautiful
But it’s a beautiful ride
Life aint always beautiful
Some days I miss your smile
I get tired of walkin’ all these lonely miles
And I wish for just one minute
I could see your pretty face
Guess I can dream, but life don’t work that way
But the struggles makes me stronger
And the changes make me wise
And happiness has its own way of takin’ its sweet time
No, life ain’t always beautiful
But I know I’ll be fine
Hey, life ain’t always beautiful
But its a beautiful ride
What a beautiful ride

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Update: from mommy

Posted on November 10, 2012 by Nana

Well they let us leave the hospital and we are now back at the SCCA House. I’m scared to death but I have to trust in God. They gave him an ANC boost which can cause him bone marrow pain so I have to watch closely and try and figure out if he’s sick again or if its the ANC boost. I live in fear every second of everyday. I tremble every time Liam cries it is constant panic not knowing if HLH is going to come back. I don’t know how to be happy going through all of this with Liam. I am so scared of losing him. Due to that my life is forever changed. I will continue to take Liam to clinic everyday for lab draws as long as he is doing ok. They will check his graft this Friday and I pray Hunters cells are taking over. If not then I have to discuss another transplant with the doctors.
I am so completely lost right now.

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

Still no real answers…

Posted on November 8, 2012 by Nana

Update from Mom: Well it’s either a HLH flare or GVHD and if its a flare and the boost doesn’t stop it Liam will need another BMT I feel like my life if falling apart around me.

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The doctors are not sure what is going on. His lymph node in his neck are still swollen, they seem softer, but not larger. Spleen is still enlarge and doesn’t appear to be larger. No fever this morning. His ALT & AST are trending down, he is taking Ursodiol 2x day for his liver. His soluble IL-2 receptor is elevated. His ferritin had been holding aroung 40, which low before this week. Now it was 204 on 11/4/12, 246 on 11/06/12. They are going to recheck it tomorrow. The test for viruses came back negative. We hope that it is just his graft coming in. The will test his engraftment at day 28, from October 17th. If this comes back low, they with discuses other options. That being another bone marrow transplant.

Please keep him in your prayers,
thanks, Nana

Update – 11/05 – 11/06/12

Posted on November 7, 2012 by Nana

11/06/12 – 🙁 in the hospital Liam’s temp still a little up glands in neck are swollen and spleen is also a little swollen. Haven’t slept and I’m so scared this could be HLH coming back. Please pray that it is not.

11/05/12 – 9:12 pm – The doctors checked Liam out and he still has a low fever and counts are still dropping. Dropping numbers go along with Hunters cells coming in but they don’t think the fever is related to it so please pray it’s nothing. Liam is very cranky and it is really worrying me.

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

Liam has a fever : (

Posted on November 5, 2012 by Nana

11/04/12 11pm – At the hospital Liam has a fever please pray it’s nothing to worry about

11/05/12 – 11:15 am – Waiting for lab results. Liam was up until two in the morning and then up at three and has been crying since he woke up. Not sure what’s going on but his fever seems to be gone.

11/05/12 – 1:00 pm – Liam still has a low fever and all his counts besides his WBC are dropping. Praying this is just Hunters cells taking over not HLH coming back. He has a appointment at 3:00 to check him out.

Posted in Bone Marrow Transplant, Doctors Appointments, Histio Awareness - HLH, Hemophagocytic Lymphohistiocytosis, HLH, Liam's BMT updates | Tagged child rare disease, Chimerism/Engraftment, Familial Hemophagocytic Lymphocytosis, Hemophagocytic Lymphohistiocytosis, HLH | Comments Off

Heavy Hearts…

Posted on November 4, 2012 by Nana

This week has been very difficult, 4 more children’s live have been taken by this horrible disease. I HATE HLH!!!!!! Please prayer for the family’s of Wylan, Jaelynn, Baby Isaac and Zander. Our thoughts and prayers go out to their familys, My they find peace, strength and comfort in this very difficult time. FLY HIGH ^^LITTLE ANGELS^^

Posted in Histio Awareness - HLH, Hemophagocytic Lymphohistiocytosis | Tagged child rare disease, Hemophagocytic Lymphohistiocytosis, Histio Awareness - HLH, HLH | Comments Off

Happy Halloween From Captain America

Posted on October 31, 2012 by Nana

Posted in Histio Awareness - HLH, Hemophagocytic Lymphohistiocytosis, HLH, Photos | Tagged child rare disease, Familial Hemophagocytic Lymphocytosis, Hemophagocytic Lymphohistiocytosis, HLH | Comments Off

Jaelynn lost her battle with HLH. Please say a prayer for her mom and her family

Posted on October 29, 2012 by Nana

Our hearts are heavy, praying for comfort and strength for her family during this difficult time.

10/29/12 – Jae earned her wings today at 430p eastern time…

FLY HIGH ^^Jae^^

PLEASE EVERYONE TAKE A MOMENT AND PRAY FOR JAELYNN’S MOM (Lisa Yoo) AND HER FAMILY

In August 2011, Jaelynn was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH). She received her Bone Marrow Transplant in Dec. 2011.
It has been very hard on her she developed Graft-versus-host disease (GVHD). Just recently she came down with Post-transplant lymphoproliferative disorder (PTLD), and had to start chemo again. She is only 4 years old. Please Pray for her and her family. Pray that the treatments will help her.
10/26/12 – Update from Jaelynn’s mom: Urgent prayer request for Jae today!!!! She is in critical condition… Her blood pressure is dangerously low and they have her sedated… Please please please… If there is a God you will not take her!!

10/27/12 8:00 am – update from Jaelynn’s mom – So jaelynn has a bacteria called pseudomonas that has spread to her blood stream. It is very serious because there are only two antibiotics that can get rid of it but these medicines can be tough on her kidneys. She is heavily sedated right now because she is on the oscillator To help her lungs from collapsing . If she weren’t sedated it would be very uncomfortable for her. So, complications were expected with chemo. I didn’t have much choice. It was either this or let the lymphoma get worse and eventually kill her. I’m still hopeful and the drs are hopeful that she will pull thru this…

10/27/12 – Update from Jaelynn’s mom: Jae is not doing well. She’s in critical condition again…

August 2012

10/28/12 – PLEASE CONTINUE TO PRAY – Update from Jaelynn’s mom – It’s been a long night full of emotions. The dr gave us the “talk” last night and I am at a loss of words. I don’t want to believe it and I can’t believe that Jae’s fight is almost over. She is fighting so hard and for so long. If she could just have a little time to build her counts back up and fight this nasty bacteria that is making her so ill… She just needs some time!!! She’s gone this far, she deserves time!!! .. I’m hurting soooooo unbelievably bad right now and have been hurting since day one! I’ve tried to stay so strong for her and now I’m starting to break….

10/29/12 – Update from Lisa Yoo
2 minutes ago near Cincinnati, OH ·
Please say a prayer for jaelynn to have comfort for the final hours of her life… Her oxygen level has dropped down to 50%……