Friday, October 21, 2016
Day +2 (again): "There is always something good...you just have to look for it."
As most of you now know, Rowan's changing mental status was first thought to be a result of enlarged ventricles of his brain due to a shunt malfunction. However, once that was corrected, his altered mental status remained the same. Then, his blood gases and electrolytes indicated that he was experiencing metabolic acidosis and a severe electrolyte imbalance, and they thought that was the reason for him being unresponsive. However, he started dialysis, corrected the acidosis, and still remained unresponsive. Last night, we got more bad news, but possibly, finally, the true explanation for his incapacitation. The CSF fluid from his lumbar puncture showed that he had an active CMV virus. He has been diagnosed with CMV encephalitis...a serious viral infection in his brain.
The first words out of the doctors mouth were, "we found something, but it is so rare, we aren't sure what to do yet". She went on to explain that no one, and I mean NOONE, had ever seen a case like Rowan's. Not here at Seattle Children's, not here in Washington, not here in the United States, not reported anywhere in the world. They have called the top CMV specialists in the US and abroad. I have also made phone calls back home, to doctors who made phone calls to top CMV specialists that they know as well. It is just simply unprecedented.
See, Rowan had been exposed to CMV virus prior to our arrival for transplant. Most all of us have, but for you and I, that would not be a big deal. We can carry CMV and never have a problem. Immunocompromised patients are the ones who have a hard time fighting CMV, and many transplant patients do. But, they typically find it in their blood stream. Since they knew Rowan had antibodies to it, he has been treated with an antiviral throughout his entire 3 month hospital stay so far. They even tested his blood repeatedly to make sure he did not have the virus reactivate. In all of the blood tests, he never showed signs of the virus popping up.
Then, when the CT scan showed enlarged ventricles, they did a spinal tap to check his intracranial pressures. Routine procedure is to then send the fluid off for viral and bacterial testing. They did so, but were not expecting anything worrisome to come back. Last night, it did. Here is where the rare part comes in. People do get CMV virus, but healthy people can fight it no problem. Transplant patients do get CMV virus too, but in their blood and they respond well to treatment for the most part. Rowan was being treated preemptively for CMV virus as a precaution, had no indication of it rising in his bloodstream, but apparently it compartmentalized in his cerebral spinal fluid instead. That caused a severe viral infection in his brain, which over the course of just 5 days, took him from having fevers and being tired, to experiencing confusion, delirium, and finally into a completely non-responsive coma.
As the doctors research how to treat this infection in the brain of Rowan: a young child, who is in the very beginning days of a second bone marrow transplant, they discovered...nobody really knows. There are no known cases like Rowan. There is no data. There are no case studies. There are no recommendations that can be based on fact. Kids just simply do not contract CMV in the CSF, especially with no evidence of it in their bloodstream for 3 months straight.
Rowan has always been rare, unique, complicated, special, etc. We are used to that. Sometimes it's cool...but sometimes it is not a consolation. Real talk: At first, I felt defeated. I turned and walked out of the room. It was the first time this entire hospitalization that I walked out on a doctor. There is just simply only so much one person can take. It was too many complications, too many days in a row. And to tell me, "we don't know yet what to do"...I just couldn't...
The good news...I regrouped, the doctors rallied, they called specialists all over the country and abroad, I prayed, I apologized for leaving, they apologized for not having all the answers, and we all moved forward, focusing on Rowan. And within hours we were all on the same page as to how we can best handle this extremely untimely, difficult situation. We now have a plan, and everyone, and I do mean everyone, was in agreement. It won't be easy, it won't be quick, it is not a perfect plan, but it is a plan that is doable, given the current disease process that Rowan has, as well as considering the current stage of his transplant process.
Instead of continuing to cry and ask "are you serious?", "another bump in the road?", "what more can go wrong?" etc, I did what I knew Rowan would want me to do...I looked for the positive. As he always says, "There is always something good...you just have to look for it". Thank you Rowan for that lesson and thank you God for allowing me to find the good.
#1. It is good that we discovered the problem. And guess what? It was by what would seem like an accident or a mistake (but we know better). If Rowan's shunt would not have malfunctioned, we would not have done the lumbar puncture when we did. We did the LP so we could see what his ICPs were. Then as a matter of standard practice, went ahead and sent off the extra CSF fluid for testing. That is where the virus was found. Had the shunt not have malfunctioned, it could have been days before anyone tested CSF fluid on him, and he could have deteriorated even further. SO, it was good that his shunt malfunctioned, so we could find this virus in his brain.
#2. It is good that one of Rowan's life goals is to help doctors improve medical science. More than a month ago, when we learned that the first transplant failed, Rowan told one of the doctors, "It's ok, just think of how much better doctors you are going to be when you're done with me. If you can fix me, you will be able to fix anybody!" It sounds funny, but he didn't mean it arrogantly, he meant it sincerely. He knows how complicated he is, and instead of feeling sorry for himself, I just love how he felt proud of that fact instead. He was happy to sacrifice all of his pain and suffering, if it meant that the doctors would be able to "fix" more patients. Fast forward to this current situation and I see that prophecy being realized. Before yesterday, there were no known cases of a child with CMV in their CSF (not their blood) causing viral meningitis. But guess what, WHEN Rowan overcomes this, WHEN the doctors do treat him, WHEN God does heal him, there will be! There will be written in a medical journal somewhere, "10 year old boy, CMV in CSF, treated with....." etc. Then Rowan will have been right, he will have made them better doctors:). The case will certainly make history, and the doctors will have improved their knowledge of how to treat any future patients who may contract this awful viral encephalitis, and hopefully lives will be saved. I take that as another positive. Not because I am happy to have him be the pioneer of this unfortunate, serious medical issue, but because it will help others in the future. That is the story of Rowan's life. Always, and I do mean always... thinking of others, and willing to take the pain for others.
This is by no means going to be an easy road. This virus is slow to grow, but also slow to eradicate. His situation is further complicated by the fact that he is just 2 days post his second bone marrow transplant within a 3 month period. There are serious potential threats to his brain and multiple other organs in his body, as well as his vision. There is the risk of his transplant not engrafting or engraftment being delayed. But we cannot focus on those risks. We cannot dwell on our disappointment or wallow in self pity...it will not benefit us in any way, it will not benefit anyone at all. So, instead, we are choosing to let this "hiccup" be a sign of how big God is, how many mountains he can move, how many other lives can be saved, and how you can turn ANY negative into a positive, if you just try. Thank you Rowan, for teaching us to think that way.