It’s been a few weeks since we’ve posted anything on our blog. Main reason has been that Indira started a page on Facebook. The link to the facebook page is here. So, what’s been happening with the Kim family? Not much! In the past month, we’ve noted our four years with pediatric cancer. We have now spent more than half of Maya’s life fighting for her life. There are many emotions that run through, when I think about such a thing.
As many of you know, we’ve had some bumpy rides along the four years. Just looking through the amassed blog entries speaks volumes of our tribulations. But, Maya is alive and getting better. And at this point, one of the greateset emotions that we have is that of gratitude. Grateful that Maya is alive. Grateful that there are therapies out there for us. Grateful that we were able to access the therapies. Grateful for the support from everyone around us. It isn’t that the ride was smooth. You all know that. As bumpy as it has been, Maya is still with us. That is enough.
So, why is this therapy been so lengthy? Let me put down what we underwent. The therapy was eradication of Maya’s blood system, replacing it with My (Kirby) system (Non myeloabalative Haplo transplant with NK cells) Why?
- Using Maya’s own stem cells (autologous) was not a good idea because there was a predisposition for cancer.
- There is a higher chance of relapse because, cancer is part of her body.
Therefore, using someone else’s immune system was the way to go. We also want someone elses immune system because it can recognize the cancer cells as being foreign and will kill it. Of course, the ideal is a complete match, but there aren’t too many Ecuadorian/Korean mixes in the world that have the same MHC typing with KIR mismatch. Thank goodness that a haplo match could be used. If this therapy was not available, Maya would not have gotten a transplant and she would have succumbed to MDS, sooner or later.
So, I (Kirby) was the donor. Maya is half like me, so that’s good. But different enough that my immune system can recognize her cancer cells as being foreign. If there are cancer stem cells still in her body, my immune system will recognize it and will attack it. The problem is, my cells do not differentiate between her cancer cells and her body. This effect is known as Graft Vs Host Effect. If the new immune system attacks her body, it’s a Graft VS. Host Disease (GVHD). If severe enough, it’s fatal. But that rarely happens anymore. What does occur is a chronic GVHD, where there is a chronic war between the body and the immune system. While not fatal, it can be substantial.
So, how does one deal with that? You deal with it by slowly bringing the immune system back, through the use of immune suppressors and steroids. In particular, the naive T-cells are killed off for the first few months so that both the body and the immune system can readjust. The naive T-cells migrate to thymus where they are “taught” to fight off a specific type of infection. Once these naive T-cells are “configured” to fight off a specific infection, it no longer will be triggered to attack Maya’s body. We do see a mild forms of GVHD in Maya. The disease presents as skin issues, inflamations and joint issues. Maya definitely had skin problems with lots of peeling. But these are getting better. When my stem cells were injected into Maya, the T-cells were reduced but not completely removed. For some unknown reason, residual amount of T-cells are required in the transplant. But the numbers of the T-cells were reduced by a 1000 fold.
GVHD can arise anytime within the first year or so. However, longer one goes, less likelihood that GVHD will arise. Since the transplant, we’ve spent the time monitoring Maya for GVHD. And to a large degree, the physicians here were “tweaking” her immune system. For example, use Immune suppressor (MMF) That was a mistake for Maya. Maya had a severe toxicity from it. Ironically enough, initially Maya’s protocol included serolimus (AKA rapamycin) However, at the last minute, the doctors changed it to MMF because MMF was less toxic. And use steroids to suppress the immune system.
So, at a higher level, it’s not too complicated. But in implimentation, it’s something else. I think listing the drugs will give you some idea on what we are dealing with:
- Ursodial (For H-VOD)
- Gabapentine (Neuropathic Pain)
- Voriconozol. (Anti fungal)
- Acyclovir (HHV6 and HMV, antiviral)
- Gancyclovir (BK, antiviral)
- antibiotics of different flavours
- Benedryl (For Neuropathic pain, nausea)
- PPI Proton Pump Inhibitor. For Acid reflux
- Sucralfate (Acid Reflux)
- Fentanyl (Pain)
- Morphine (Pain)
- pancrelilpase (For digestion)
Well, the list is from my recall. I’m sure I’ve missed a few.
Any ways, Maya is doing well. After all these years, we’re coming to trust what we see in Maya. We know when Maya is well and when she is not. And for the past few weeks, Maya has been eating like crazy. Often, she’ll nibble at her dinner for 2 – 3 hours. That says volumes. If one is not well, food is the last thing one thinks about. So, we are happy to see Maya eat.
We are all weary from being away from home. But it’s only few more weeks. Hopefully we’ll be home for early May. And we look forward to a great Summer for Maya and us.
Oh, Maya and I have been talking about how she has my immune system. We have explained to her that her blood is that of a 48 year old man; namely me. We also explained to her that her blood is male. Today, she was seen explaining to Steve, her uncle that she had the DNA of a 48 year old man. It’s all true!
And lastly, here is a little bon mot for you. Suppose in twenty years time, there was a homicide. A man is found dead. There is no evidence whatsoever at the crime scene. However, there was a single drop of blood left at the crime scene. It was mine (Kirby) or was it? What happens to the reasonable doubt aspect of legality? Lawyers, discuss!