In the past two weeks I have packed all of our stuff twice, and unpacked twice. We were two days away from Kevin being admitted into the hospital to start treatment when the doctors called me and told me that a viral infection showed up on his blood work from earlier that week.
Kevin hasn’t had any sort of infection (other than during the transplant) in over a year. This is mainly due to him getting a transplant last summer and those new immune system cells hanging on and giving him an extra boost, up until now. All the donor cells are 100% gone at this point, and he’s finally getting sick again. When trying to decide weather he could live with this disease or if we had to go through a transplant, the amount of infections and the chances of future infections for him were taken into account. He went a year without infection, but as soon as those donor cells were completely gone an infection pops up. This just really goes to show that this is our only option, which isn’t the most reassuring.
So, this virus that he has is something that we (doctors, Austin, and I) have known about since the last transplant. It wasn’t something that we announced because we all didn’t think it was the biggest deal ever. But now, I guess it’s something we will talk about because it’s possibly shed some light on why his first transplant failed.
The virus Kevin has is called HHV-6. It’s is a set of two closely related herpes viruses known as HHV-6A and HHV-6B that infect nearly all human beings, typically before the age of two. Again, almost ALL human beings carry this virus but almost never have complications due to it. What it does is hang around until your immune system is low (so until you get any sort of illness) and then it attacks. It typically only shows cold-like symptom’s. Now, we know Kevin had a fever a couple weeks ago that didn’t really ever come to anything. Knowing that the HHV-6 levels are extremely high, makes sense as to why he’s had that touch-and-go fever. Like said before, it typically doesn’t cause any serious complications…except it does in Kevin’s case.
Last year this virus came about during transplant. The doctors started Kevin on an IV drug called Foscarnet, an antiviral medicine that prevents certain virus cells from multiplying in your body. That drug is so so soooo hard on the body, especially the kidneys and the urinary tract. It was something I never wanted him on again. It helped his levels go down to a reasonable level.
Today, the levels of this virus are insanely high. He has over 1,000 copies, I don’t know the exact number (which just means that if there are more than 20 copies per microgram of DNA then it means that there is an active infection of this virus and Foscarnet will help decrease the number of copies).
We don’t know the exact game plan with this yet, I’m waiting on a call from the doctors on his levels for this week. If his levels are still high, it will be an inpatient treatment of 21 days of foscarnet and then we can start transplant treatment. If the levels are lower, we can start transplant if they continue to go down.
One good thing out of this is that it possibly gave the doctors a better idea on why his first transplant failed. We didn’t know about this virus until towards the end of Kevin’s first transplant stay. It didn’t get treated until that point. SO, his doctors out here in LA are saying that this virus could have caused the transplant to fail. It wasn’t detected before transplant and wasn’t treated so it could have been slowly attacking the new bone marrow from the beginning.
This raises a lot of concerns for me. This is a virus that will never ever go away. It’s something that is integrated into his DNA and will always be there.
Is this something that is going to be attacking his donor marrow again?? Could we suppress it enough so that it doesn’t? How can we know that this isn’t going to just destroy every single transplant we try?
I know we aren’t at this point left, but if this second transplant fails I don’t know where we go from there. How much chemo can a toddler go through? How many more hospital stays will he have to endure? I KNOW he is so much stronger than we all realize, but something has got to give at some point. I can’t imagine this being the rest of our lives.
We are all trying to stay positive and find relief in knowing that God and his doctors have this handled. We really appreciate all the continued prayers and well wishes, it means so much to our family.
As always, thank you for reading!