Tyler’s Journey…

Tyler stayed stable all day.  Despite his lungs looking the worst ever, he had good blood gases, good oxygenation, and needed no blood pressure medication.  They are planning to do some weaning from the oscillator tonight.  We are blown away by all the people who prayed for Tyler tonight at various prayer vigils and who have […]

Just real quick: Tyler’s still pretty stable, and got down to a delta p of 62 on the vent. Lungs still looking bad on xray. The current new issue is that blood seems to be pooling somewhere in his body. His belly is hard and distended. He is getting 4 units of blood a day, […]

It happened! Tyler got his MIRACLE! I don’t even know where to begin. Last evening, (15th), Tyler’s condition deteriorated quickly as he lost huge amounts of blood via his GI tract, and his organs started to shut down. A team worked on him for around an hour right around shift change. In the midst of […]

The below account was written by our pastor, Kevin Hardy, who was with us the night Tyler had his miracle. Ron and I wanted to share it, because it’s just as amazing a story from Pastor Kevin’s perspective! Tomorrow Ron is going to share his own account. None of us who were there that night […]

Sorry no updates before now – I slept longer than intended after the craziest and most adrenaline-inspiring 24 hours I’d ever had! I am headed back to the hospital but spoke to Ron briefly. Ty is doing very well still on his conventional ventilator! The challenge of the day has been for his team to […]

Ron and I just keep breaking out in big, goofy grins today. Tyler has become something of a spectacle on the unit – the staff slow down and peer in as they walk past his room. Lots of smiles all around! The day shift from yesterday surely didn’t expect to see Tyler still here this […]

Part I of a two-part post from Ron: Well, it St Patrick’s Day, and I can honestly say we have one strong paddy lying in the PICU at Johns Hopkins. Tyler is an astonishing individual who has overcome insurmountable health crises since he began his cancer journey in early September 2011. I remember the joy […]

Tyler’s blood gases remain wonderful, so they have weaned him down a bit more on the ventilator. All his vital signs are terrific with every wean. He is opening his eyes more and with purpose. I can’t tell you enough how amazing it is to look into those eyes, which for the last four weeks […]

Part Two of a Post from Ron: Today is my birthday, and I can honestly say that I still have a lot of growing up to do. It has been nearly five weeks since Tyler was originally placed on an oscillatory vent. He was supposed to be on the oscillator short term before transitioning to […]

Just asking for folks to cover Tyler in prayer today regarding his bleeding issue. He required four units overnight, and it didn’t improve his hemoglobin. It is critically important that during the endoscopy they can locate and repair the source of his bleeding (and not cause new bleeding from the procedure). Im sure this will […]

We just spoke with the GI specialist who will perform Tyler’s endoscopy. It won’t happen until tomorrow (around noon) since the OR is not fully staffed today, and they feel Tyler is stable enough to wait one more day in order to do it in safer surroundings. So as we wait, please pray that Tyler […]

Tyler will be undergoing the endoscopy in the next few minutes! Please pray as you have been for clarity to see if something can be repaired and safety from perforation and further bleeding!

The endoscopy is complete, with no perforations or increased bleeding! That’s the good news. Prior to the procedure, we met with Dr. Cuffari, the GI specialist, to sign consents and learn about possible outcomes. What the endoscopy revealed is that Tyler’s condition is the worst case scenario. His stomach showed completely homogeneous and diffuse irritation […]

We have been given new information regarding the results of the endoscopy, and things are much more urgent and critical than we originally thought with the damage to his stomach. If in the next 24-48 hours Tyler continues to need increasing blood pressure support and increased blood products, he will need Miracle #2. Each day, […]

We just finished meeting with two of his doctors. Tyler is continuing to lose blood as fast as they can give it. His stomach and intestine tissue has been lacking oxygen for a very long time now. It could perforate at any time. Not only does the bleeding need to stop, but the tissue needs […]