Category Archives: Histio Awareness – HLH, Hemophagocytic Lymphohistiocytosis

Helping to raise Histio Awareness. HLH, Hemophagocytic Lymphohistiocytosis, is a life-threatening immunodeficiency.

Liam and Mommy…

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Noa’s final check up… Update from Mommy

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 … Continue reading

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DAY -2

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 … Continue reading

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DAY -3

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 … Continue reading

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Liam rocking to Elmo…

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DAY -4

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 … Continue reading

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DAY -5

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 … Continue reading

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DAY -6 ~ Chemo Condition starts today

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. … Continue reading

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DAY -7 ~ Surgery today, please pray…

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. … Continue reading

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DAY -8 ~ Last Clinic Appt before BMT #2

It was a really emotional day for me, just knowing the road ahead for Liam. It was hard to keeps the tear under control, knowing you have to make him sick to make him better. Liam will get his pic … Continue reading

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