DAY +600 UPDATE

3 am: They did not do the bone marrow biopsy today. They going to wait on the rest of the labs to come back. It is taking longer because of the holiday. Just got off the phone with papa, he said Liam’s IV line started bleeding under the skin and was swollen. They tried to put in a new line in several areas, but they couldn’t get it or keep him still. So they are going to sedate him, and try to place a new line. I could hear him, just breaks your heart to hear him so pitiful.

7:30 am – It has been a very long and stressful night for Liam. His line failed and they tried 6 times to place his IV line. None successful. They are going to be taking him into surgery to place a PICC line. His fever is up to 104.5 Please keep him in prayer.

8:45 am – They got the Picc line placed. Thank you for all prayers. I’m sure they are resting now. I will update more when I hear from them.

4 pm – Just got a call from papa. Liam still is running a fever, 102.5. Some more of the virus tests have came back negative. Their are more pending. His platelets were low yesterday, so he received platelets. They are going to give him red blood cells today. His last ferritin was 135. They don’t have the soluble IL-2 receptor (slL-2r) back yet. He has had loose stools. Doctors are leaning towards GVH in his tummy. They are also waiting for the donor/chimerism test to come back tomorrow.

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DAY +599 UPDATE

PRAYER REQUEST FOR LIAM. He is still not feeling well. He will be having a bone marrow biopsy at 2 pm today. He still is fighting high fevers. They are trying to rule out everything. They don’t have the ferritin back yet.

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DAY +598 – UPDATE

Update 7:30 PM – They should more info in the morning. He still has a fever today. But not as high as last night. They are giving him Tylenol via his IV. So glad they could give it to him in his IV. Tried to give it to him twice, both times he projectile vomited. He had a chest x-ray, they said it looked clear. He still has no energy and just resting. Not sure what test results they have back yet. Kristy said some of them came back negative. His platelets are low, they said that can happen if he is fighting something. They are going to do another nasal rinse too. They are checking everything. Hopefully he will be feeling better soon. Praying for a speedy recovery for our little warrior.

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Update: Liam is in the Hospital

Update 12:30 PM – Liam is in the hospital in Seattle. They got there about 2:30 am this morning. His fever is down. I will update more when I get more info.

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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 not a HLH flare.

Today his fever was 104. It is lower now. Hoping it doesn’t spike again at night. He has been resting most of day, no energy.  Tried to give him some Tylenol, but both times he threw up. He is very fussy, hate seeing him like this. He has been through so much.  Really hope he feels better soon.

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Christmas Blessings…

Update from Mommy –  Liam’s donor results came back, they went up. We are all so excited and feel so blessed. It was such great news, Kristy was so overwhelmed with emotion she could barely tell me the news. I wasn’t sure what she was going to say. She could only get out “TEARS OF JOY !!!” Thank you for all the prayers and support, it really means so much to all of us. He will be getting tested again on January 15th. We are praying that his numbers will continue to go up. Hunter may need to give another DLI boost. They will wait to see where Liam’s numbers are on the 15th.

Merry Christmas

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Strength…

Seek the LORD and his strength;seek his presence continually!
‎1 Chronicles 16:11

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DAY +572 Clinic appointment

Liam had labs drawn today. He was really good, didn’t even cry. Lesley did a great job. His liver counts are still elevated. He will have in engraftment tests done in a couple of weeks. Please continue to keep him in your prayers.

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Graft dropped 4% :(

Liam’s graft was 36%, now it is 32%. I will be in Seattle another 4 weeks at least with Liam. Then they will test his graft again. If there is no improvement they will try another boost.

‎”Learn from yesterday, Live for today, Hope for tomorrow.”

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Praying for good news…

Golden Gardens – Seattle, WA

 

It is just beautiful here in Seattle!

I have a good feeling about this,

I hope I’m not wrong…

 

 

 

 

   

MOMMY AND HER LITTLE WARRIOR

Mommy and her little Warrior

TEAM LIAM – HUNTER & NOA

Team Liam – Hunter and Noa

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