Author Archives: Kristy

DAY+ 607 Chemo #1

Liam will get his chemo today its a bitter sweet, tug a war I have emotionally with chemo, it makes Liam sick but saves his life at the same time. * Liam is getting chemo right now, and I’m feeling … Continue reading

Posted in Bone Marrow Transplant, Doctors Appointments, Hemophagocytic lymphohistiocytosis (HLH), Histio Awareness - HLH, Hemophagocytic Lymphohistiocytosis, HLH, Liam's BMT updates | Tagged , , , , | Comments Off

Update

They took Liam off his morphine drip and his belly went from 52.5cm to 48cm. They are going to start chemo in a few days to get his HLH into total remission.

Posted in Bone Marrow Transplant, Hemophagocytic lymphohistiocytosis (HLH), HLH, Liam's BMT updates, Photos, Uncategorized | Tagged , , , , | Comments Off

DAY+ 606

It breaks my heart to watch Liam struggle, to lift his head, try to hold his body steady in a sitting position, try to feed himself with shaky hands, try to force his eyes open, or not be able to … Continue reading

Posted in Bone Marrow Transplant, Hemophagocytic lymphohistiocytosis (HLH), Histio Awareness - HLH, Hemophagocytic Lymphohistiocytosis, HLH, Liam's BMT updates | 1 Comment

DAY +603

Liam had an ultrasound yesterday , his spleen and liver are swollen. His liver counts were a little lower today. They are leaning towards HLH flare. He hasn’t had a fever since yesterday. His temps have been running low, around … Continue reading

Posted in Bone Marrow Transplant, HLH, Liam's BMT updates | Tagged , , , | 1 Comment

Day two of fevers :(

Liam has a fever, two trips to the ER and still no real answer. I’m so scared. All of the tests have all came back negative so far. The Ferrittin level is still in the normal range. Praying that its … Continue reading

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Another Day

When I write in my blog I write my try emotions in hopes that other family’s who have a child with a life threatening illness will see there not alone in there thoughts. I haven’t posted in here for a … Continue reading

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Six months post BMT

This has been a trying week for me. Liam had his appointment last Tuesday and he had a rash again they looked it over and thought it was the same rash he had before. Which is good but a BMT … Continue reading

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Liam’s diagnosis

One year ago today Liam was diagnosed with HLH. The doctors and nurses worked endlessly to save Liam’s life and they did. If Liam would of went undiagnosed he would not be here now. I will never forget those that … Continue reading

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Seattle Check up

As we started our journey to Seattle for Liams check up my stomach was full of butterflies. The unknown is so hard to except. We arrived in Seattle to beautiful weather and it felt as though we never left. We … Continue reading

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I am truly blessed…

I am truly blessed. I have nothing to complain about. As I was laying Liam down to sleep I started to think about how he must of felt at 28 days old. His life had just begun but he would … Continue reading

Posted in Liam's BMT updates | 1 Comment