We spend our lives trying to prepare ourselves for different events. Tests…graduations…college…weddings…kids…a management position…a new job. Life seems to always be about preparing for the next thing. But there are some things you can never prepare for. There are some journeys that offer no map…no directions…no GPS. You simply put one foot in front of the other and hope you are going in the direction God has prepared.
This week was a week for which Travis and Carrie were not prepared. There was no map on how to navigate. No directions. No GPS.
Because the echocardiogram came back so strong their spirits were up. They needed something positive after all the blows they had received and they had gotten that positive news with the echo results. They were reminded that God was in control and things were looking up.
It was determined that the blood clot in his lung had broken off from the one in his leg. That alone could have been an instantaneous death…but it wasn’t. It went to his lung where it showed up on a CT scan. Clearly God’s hand has been upon Travis. Clearly God was with them.
They had tried their hardest to convince the doctors to let them stay and have Travis start the trial in a week. After all, the last time they went home Travis ended up with a blood clot and an incision that seemed to leak fluid endlessly. Going home was not appealing. But it was to no avail. Travis needed to go home and recover before they began the trial and return in two weeks.
But, despite that, overall things were good.
And then the doctor walked in. He walked in without a map, without directions, and without a GPS to help them navigate the news he had to share.
They were not prepared.
The lab had called. Travis’ cells were contaminated.
All. Of. Them.
The lab called and informed the doctor that his patient…Travis…had Aspergillosis.
Aspergillosis. A fungus. A fungus that is found in Georgia, among other places, that you get by breathing in. It infects approximately 1 in 100,000 people, typically those with a compromised immune system.
It chose Travis.
“Travis…it is insurmountable to get you into a trial. You are actually no longer eligible for any trial. There is nothing more we can do for you. I’m sorry.”
How do you navigate this news? Where are the directions on handling this? How do you prepare?
Carrie and Travis choked out sobs of desperation. They cried more tears than they knew they had. They held each other.
And then. One by one. They called their loved ones. They choked out the words and cried all over again with each call they made.
There was no map. There were no directions. This was new territory. Yes…they always wondered if this moment would come and how they would handle it. But just because you wonder if it will come doesn’t mean you’re prepared to handle it.
The sadness was enveloping. It was almost suffocating. Almost.
But there was still a peace. Because they know…this life is so short…so temporary…and that there is a bigger picture that matters.
The day drudged on. The thought of having to make it through the night there ,with no hope or purpose for being there, seemed overwhelming but so did packing up to leave.
They made some more phone calls…they wept some more…they did their best to prepare.
And then the infectious disease doctors walked in.
They knew that these doctors were coming but they thought that they were there to discuss treatment of the fungus.
But, that was not the case.
The infectious disease doctors introduced themselves and got to the point…
Mr. Roberts, we don’t think you have Aspergillosis.
Unbeknownst to Travis and Carrie, when their trial doctor left that morning after giving them the news, he didn’t stop fighting for them. He spoke with infectious disease who would be visiting Travis that afternoon, and he asked them to please prove him wrong. Help him determine that Travis did not have a fungal infection.
And they went to work.
They poured over his CT scan from last week. They looked at his medical records. They studied the puss coming from the incision.
The CT scan showed two spots on his lungs that could be Aspergillosis. But this was an airborne disease that had presented in his liver. For it to have made it to his liver it should be pretty apparent in his lungs.
When they examined the puss from his incision, it showed no sign of the fungus.
Thorough physical exams were given by both infectious disease and the pulmonary doctors. They both thought that it was very unlikely that Travis had this fungus. These visits were actually humorous for Travis and Carrie. Some of the questions that they asked were… Do you live on a farm? Do you work outside? Do you do a lot of yard work? Are you around chickens or birds? The thought of Travis in any situation like this is pretty funny. He really isn’t Mr. Outdoors.
But, most importantly, people breathe Aspergillosis on a regular basis. It is just in the air. However, healthy people can easily fight it off. Sick people can’t. People with compromised immune systems can’t. Travis has had countless blood tests over the past year and not once has it shown a weakened immune system. Not once. His blood test results have never been anything but perfect and his white cell blood count has always been within normal range…even with the infection in his incision.
The fungus is on the cells. No doubt. The only question is…how did it get there?
There are two answers…both are far fetched and both have equal chance of being true. Either Travis has Aspergillosis or the sample got contaminated. The lab has only had one other contamination in the past ten years. It just doesn’t happen. But…someone with Travis’ white blood count doesn’t contract Aspergillosis. It just doesn’t happen.
Yesterday Travis had a lungoscopy. They inserted a tube through his nose and down into his lungs and sprayed saline into the lungs. He says it felt like he was drowning. He was supposed to be knocked out, but his cough woke him during the procedure and they could not get him back out. They pulled the fluid back out of his lungs and sent it to the labs for multiple tests. They will watch that fluid in the lab to determine if he has the fungus.
They also did a special blood draw that was sent to the labs for testing. The infectious disease explained that there is no way to determine 100% whether Travis has the fungus or not, but these tests will give them a very good idea.
To recap, the CT scans appear to be clear of Aspergillosis, any slides that have been tested from the surgery are clear, but most importantly the experts who have given Travis physical exams do not think that he is a candidate for Aspergillosis. The tests that were done yesterday and the day before take around 72 hours to come back with findings of the fungus, but we have been told that they are already coming back clean from a bacterial or viral infections.
After all of this, if the fungus grows on Travis’s tests, there is nothing more the NIH can do for him… for now. The fungal infection would take months if not years to clear from Travis’s body and that is time that he does not have. If it doesn’t, and they all agree that he is not the carrier of the Aspergillosis, then he will be making new trial plans with the doctors.
How do you prepare for that?
The next few days will be emotional as they anxiously await the news. Any time spent is nerve wracking. After all, the cholangio is still growing inside of his body as these things are being sorted out. The Roberts are not sure when they will be sent home, because Travis is still healing from the lungoscopy. But whether they are in the hospital or at home they are waiting to hear what the next few weeks will hold. There is no planning for it. There are no directions for it. Regardless of what the news is…there just is no way to be…
Travis wanted to add Carrie’s quote… Through it all, God is Good!