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

2nd BMT – DAY -1

Posted on March 5, 2013 by Nana

Liam has been very inconsolable for 3 hours 🙁 I hope at some point we will be able to get him comfortable. It is the worst feeling to see your child like this, and know there is nothing, you can do.

Im at lose for words tonight… Tomorrow I will take Noa to the hospital at 7am to donate his narrow, in hopes that this will be Liams cure. I hole this is the hardest thing, I will ever have to face once again.

I have no doubt in the strength of my boys and that’s my focus right now. Please say a prayer, or send positive vibe our way. This is our big day, HLH go away!!

Liam and Mommy…

Posted on March 4, 2013 by Nana

Posted in Bone Marrow Transplant, Hemophagocytic lymphohistiocytosis (HLH), Histio Awareness - HLH, Hemophagocytic Lymphohistiocytosis, HLH, Liam's 2nd BMT updates | Tagged child rare disease, Familial Hemophagocytic Lymphocytosis, Hemophagocytic Lymphohistiocytosis, Histio Awareness - HLH, HLH | Comments Off

Noa’s final check up… Update from Mommy

Posted on March 4, 2013 by Nana

Today, I took Noa to his appointments. They checked him over and did his final blood draw. My mom and dad stayed with Liam so I could take Noa. I feel so blessed to be surrounded by such selfless people and don’t know how I would manage without them

Darren, the most amazing PA, I have ever met. Giving Noa his final exam, before transplant.

Liam is still not feeling well. His fevers have continued and it’s just a waiting game. Liam is such a Rock Star and a example of never giving up. I’m so blessed to have 4 amazing boys!

I also want to say, happy 5th birthday to Ryder, mommy loves you to the moon and back.

Posted in Bone Marrow Transplant, Hemophagocytic lymphohistiocytosis (HLH), Histio Awareness - HLH, Hemophagocytic Lymphohistiocytosis, HLH, Liam's 2nd BMT updates, Photos | Tagged child rare disease, Familial Hemophagocytic Lymphocytosis, Hemophagocytic Lymphohistiocytosis, Histio Awareness - HLH, HLH, Seattle Cancer Care Alliance, Seattle Children's Hospital | Comments Off

DAY -2

Posted on March 4, 2013 by Nana

Liam woke up at 2:30am, tummy is very upset. He has puked twice. They are hooking him back up to IV fluids, and giving him some Ativan. Praying he will get some reßt, he was awake until 1am.

Liam woke up with a smile. But he isn”t feeling good this morning. He received a transfusion this morning. He has had chills too. They say the ATG can cause flu like symptoms, fever, rash, chills, and body aches. He is resting at the moment. He is red all over and has some itching. They are giving him hydro for now. Then they will start his chemo, Fludarabine. That will run for one hour than they will start the last dose of ATG (6 hrs). ♥ this little so much. It is amazing how a child can o through this and still have a smile. ~ Nana

Because he has a fever, they took blood cultures from both of the ports on his hickman. They are also starting him on antibiotics too. They think it is related to the ATG. But they want to be sure. Prayers please ~ Nana

DAY -3

Posted on March 3, 2013 by Nana

Liam is sleeping right now. Today his tummy seems to be more sensitive. He is getting the ATG right now, it is an 6 hrs. infushion. His counts are where they expect them to be. Thanks for all the prayers ~ Nana

Liam rocking to Elmo…

Posted on March 2, 2013 by Nana

Posted in Bone Marrow Transplant, Hemophagocytic lymphohistiocytosis (HLH), Histio Awareness - HLH, Hemophagocytic Lymphohistiocytosis, HLH, Liam's 2nd BMT updates | Tagged child rare disease, Elmo, Familial Hemophagocytic Lymphocytosis, Hemophagocytic Lymphohistiocytosis, Histio Awareness - HLH, HLH, Rare Disease Day, Seattle Cancer Care Alliance, Seattle Children's Hospital | Comments Off

DAY -4

Posted on March 2, 2013 by Nana

Liam received 2 chemos (treosulfan, fludarabine) already today. ATG is going in and Im nervous, but i have faith that Liam is strong enough to handle it. My little warrior, is such a fighter!!!

Liam’s HLH Journey

Liam is having low blood pressure, with ATG :(

Liam’s temp is going up 🙁

Posted in Bone Marrow Transplant, Hemophagocytic lymphohistiocytosis (HLH), Histio Awareness - HLH, Hemophagocytic Lymphohistiocytosis, HLH, Liam's 2nd BMT updates | Tagged child rare disease, Familial Hemophagocytic Histiocytosis, Familial Hemophagocytic Lymphocytosis, Hemophagocytic Lymphohistiocytosis, Histio Awareness - HLH, HLH, Rare Disease Day, Seattle Cancer Care Alliance, Seattle Children's Hospital | Comments Off

DAY -5

Posted on March 1, 2013 by Nana

Liam is day -5 and received 2 different chemos today. He is crabby and still having loose stools. He is charming all the nurses and still smiling at times 🙂 he is amazing and such a fighter. Tomorrow he will receive 2 more chemos plus ATG 🙁 It will not be a fun day for him. ATG makes most people very sick. Please pray Liam does well with it.

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

DAY -6 ~ Chemo Condition starts today

Posted on February 28, 2013 by Nana

Liam was uncomfortable yesterday 🙁 He seems to be in less pain today. He threw up last night and couldn’t sleep.

The conditioning for his bone marrow transplant will start shortly. I had a long discussion with the team today. Trying to to prepared self for this and making sure it’s the right option. I’m not ready for this but it’s the only option and I feel blessed to have a option for Liam. Liam is going to kick HLH in the butt!!! Soon he will be playing in the dirt with his brothers 🙂

DAY -7 ~ Surgery today, please pray…

Posted on February 27, 2013 by Nana

we arrived at Children’s Hospital this morning, but we were bumped and are now waiting to find out when he will have his surgery. Please say a prayer for the new born baby who is in emergency surgery right now. I don’t know who it is but the baby needs prayers 🙁