Ollie Strong

It has been awhile, and I apologize for that. I have found it hard to write about what is going on with our lives when good friends of ours are going through such despair having to make the decision to let their son go.

Oliver Robert Halligan was born on November 11, 2013 at 11:11am. He was diagnosed with a rare heart condition called Total Anomalous Pulmonary Venous Return (TAPVR) at 18 hours old. As most of you know, Ollie has had quite the roller coaster during these almost 6 months of life. Just a few weeks ago Ollie crashed and they were able to revive him. After that, he continued to have other issues arise, so various tests were being completed.

Last Thursday Oliver had a bone marrow biopsy. On Friday the team got the results and wanted to have a care conference with Ashley and Trevor, Ollie's mom and dad. So they met with Oliver's cardiologist, CT surgery, renal and the hematologist. They discovered that the narrowing in Oliver's left pulmonary vein was longer than they had originally thought. Because of this a heart catheter that they had previous planned to perform wouldn't help and there was nothing they could do for the narrowing and they feared he would not make it through the procedure. The bone marrow biopsy showed that Oliver has Hemophagocytic Lymphohistiocytosis (HLH). HLH is an extremely rare blood disorder where the white blood cells attack healthy blood cells. The treatment for HLH is either chemotherapy (which he probably would not survive through), a bone marrow transplant (which he's not eligible for because of all of his other issues) or steroids (which wouldn't be good because he has an infection in his PD dialysis catheter. Therefore the steroids would make the infection worse and would cause Oliver pain). HLH (in kids with just HLH) has a 70% mortality rate. Because of this and all the other complex issue, Trevor and Ashley had to make a decision that no parent should ever go through. They have decided on May 12 they will free Ollie of this life of tubes, tests, pokes and let him free.

I am really at a loss of words about all of it. I can't imagine what Trev and Ashley are going through, but I have been in contact with her everyday to make sure they are OK. I feel comforted knowing that Ollie can be released from the world of tests, procedures, radiation, etc. He will be free and guide his parents, family members and friends through their lives. This is just another reminder of how precious life is. How life isn't fair. How when we are given a situation like this you try the best you can to find the positives in it just to survive a day. Trevor and Ashley will continue to live their life for Ollie, just as they would if he were physically with them. I pray Ollie helps guide his parents back to a happy place. And I know Oliver will never leave their sides, or those who they care about.

I will update more tomorrow. Please take time to say a prayer for Oliver, Trevor and Ashley...and their family. May they find some peace after this storm calms.

The McLaughlins are always here for you, Halligans!

#olliestrong