10/12/12 – Update from Mommy

Appointment after appointment… I have nothing new to update just that Liam will get the pic line put in Tuesday. Please pray that the procedure goes smoothly.

Hunter and I walking to an appointment 🙂

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Today’s Dr. Appointment update from Mommy

A very long day…
It started at 6:30am Liam had a 2 hour ultrasound. Trying to get a 2 year old to sit still for that is horrible! Then SCCA appointments for both Liam and Hunter. Physicals on both and lots of questions and checking for GVHD in Liam. Then blood draws for both boys, Hunter did really well but Liam was not having it. He was tired and sick of not being able to run around. We had the best nurse ever, who I love. She got as much as she could, but we will need to get more tomorrow. Then Hunter had to get his veins checked to make sure that his veins could take giving a boost. Then back up to transplant floor to go over lab results and pick up prescriptions.

Liam’s liver function was down!!!!! So this means no liver biopsy tomorrow 🙂

Liam will be getting his boost from Hunter. I am one happy but not totally relieved momma! Thank you for all the prayers, God is good. Now please pray that the pic line placement surgery goes well and that his immune suppressant infusion goes smoothly and no GVHD and his graft goes up so that Liam and the family can put HLH behind us. Thank you

   

My mom just brought to my attention, that two years ago today, Liam was in the PICU fighting for his life. What a long road he has had, but he is still fighting and thriving. His strength still, amazes me everyday!

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Dr. Appointment today

Waiting for the results of the labs. Hoping for good news. Please continue to pray for Liam and our family.

Our Little Warrior – Love him so much!

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Liam has to have a liver biopsy…

Update from Mommy: Got a call from Seattle… They are going to do a liver biopsy on the 11th and if his liver has GVHD they will not do the boost. Liam will have to have a another transplant.  Please keep Liam and our family in your prayers. This is just all to much

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UPDATE on Liam

Mommy’s update today on Liam

So I got the call today. We will head to Seattle on the 9th and I was informed that we will be staying at least a month. It is a very long process. It starts with blood draws on both Liam and Hunter and consults then Liam will be getting a pic line placed in his arm, then he will be admitted to the hospital to receive immune suppression. Then Hunter will donate at the SCCA while Liam is in the hospital and then Liam will receive the boost. This happens over a week and a half period. They are keeping us close to monitor Liam closely. I am terrified to be stepping back into HLH world. I really hoped we could say goodbye to it forever, but here we are and my hands are tied. Liam has no other option and as a mother those are the words you never want to hear. I’ve heard that so many times and its just not right. My love for my child does not allow me to give up but there are days that you don’t want to have to be so strong. I’ve always told myself as long as Liam is fighting so will I and he’s a fighter so I have hope that we will get through this. I pray this works and that we are not going to have to face another bone marrow transplant. Bone marrow transplants are just horrible, to watch your child in so much pain kills me inside as a mother. You truly at that point have to Let Go Let God cause that’s the only thing that will get you through. I could go on forever but I won’t, just please pray that this works and Liam does not get GVHD (Graft vs host disease). Thank you

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The bravest little man I know… Keep fighting my little inspiration <3

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Hunter and Liam’s labs looked good : )

Hunter and Liam’s labs looked good. Liam’s liver is still a little elevated. Now we are waiting for the doctors to get the best plan for giving Liam a boost. I hope and pray he does not get GVHD. It should happen within the next two weeks.

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Testing for Liam & Hunter, Please say a prayer for them

Facebook post by Kristy

Tomorrow I head up to Seattle with Hunter and Liam. They will only be getting blood draws. Liam’s is to check his platelets and other things. Hunters is to make sure he’s healthy enough and hasn’t got any viruses that could be harmful to Liam. After the blood draw I should know more on when the DLI will take place. Please pray Hunter can give Liam a boost and that Liam will not get GVHD. I really hope this works, I am so scared.

Thank you

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Quote by Mommy – I Feel Broken

I feel broken, I feel let down, but I will stand my ground. HLH will not knock, me or my son down. I feel mad, I feel sad, but HLH that’s too bad. You will not win, you will not take my son. He will fight until his battle is won. He is strong, HLH you went wrong, my son will live on….

~Kristina Smith~

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Liam’s Graft has dropped :(

Facebook post by Mommy:
Liam’s were not what I was hoping for his graft dropped from 45% to 35% 🙁 So he will need the boost from Hunter. So this process will start quickly. End of this week or beginning of next week. His platelets also dropped. If the boost does not work Liam will need another bone marrow transplant. Please pray for strength. Thank you
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