A little too slow, a little too fast

It's Saturday and the only blank day on the calendar this week. Aaron and Katy traipsed off to the creek for trout fishing in the 90 degree heat, and the other kids are out in the cut hayfield tossing the ball around. I take my first deep breath of the morning and begin to process all we learned at Mayo Clinic yesterday, the good news and the bad, and begin to Google and research the news about Amy's immune system and what it will mean for her future. I trust you want to know, too - a passel of dear readers who've followed every step of her journey from health to encephalitis to seizures and now her latest cancer scare.


Yesterday we traveled back down to Mayo to get the results of her immune system testing from a venerated doctor who is compassionate and personable. This doctor is a little older than myself, and is also just growing her hair back from her own cancer treatment. We laugh together about spiky bedhead and trade secrets about hair products for short, unruly course post-cancer treatment hair before getting into the details about Amy's testing.

She starts with the "good" news, as doctors always do. She has decided that she won't recommend Amy for a bone marrow transplant "at this time" - I breathe a slightly shocked and horrified sigh of relief to this answer to prayer, as I didn't know she would even consider such a thing once cancer was off the table! Apparently she has discovered something about Amy's immune system that would indicate a transplant might be necessary??


She holds out a sheaf of lab results and uses her pen as a pointer, guiding me through the results. Amy's bone marrow, she explains, is not functioning normally. It is not active enough. She thinks this is partly because it has become suppressed by an autoimmune response, which is evidenced by Amy's severe asthma in infancy and toddlerhood, and the autoimmune brain abnormalities (ADEM) she suffered post-brain infection in 2009 and 2010 (click here to read more about that history).

While Amy's bone marrow, one half of her immune system, is not functioning as well as it should, the other half of her immune system is in overdrive! Her lymph nodes and thymus gland are over-reacting to infections and invaders, and actually could be what is suppressing her bone marrow. That is why the doctor doesn't think a bone marrow transplant would work, because Amy's body would just suppress new bone marrow anyway. (Aaron and I wouldn't choose a transplant regardless, so we are thankful we don't have to argue this choice with the doctor!)

In non-medical terms, one half of Amy's immune system isn't working well, but the other half of her immune system is compensating for it by over-reacting. The early, non-specific reaction to infection is not functioning very well, so initially, Amy gets too sick, too quick from routine viruses and bacterial invaders. On the other hand, the specific, highly-tailored response of her body to specific infections that her body has identified is working very well, so she is able to fight off infections in the later stages very well. This is probably why her lymph glands are so swollen right now, after the infection is gone, because her system went into hyper-drive during and after the infection to make sure she fought it off completely. Her overreaction after the initial underreaction may be God's provision to keep her safe from the infections that seem to plague her little body.

The lump on the right side of Amy's neck is visible in this photo.
In the past week, she's developed visible lumps on the left side as well.
While it's never fun to get bad news of any kind, I feel peaceful about the "watch and wait" plan laid out by the immunologist. In general, I am feeling cautious about pursuing treatment for Amy. She seems to be regaining energy and happiness every day, and it seems foolish to me to disturb a little girl when she is visibly healing. I am very pleased that the doctors all seem to be reaching the same conclusion even though they have uncovered some new medical problems along the way.


Oh - one other tidbit from yesterday's appointment: the immunologist confirmed, conclusively and for the second time, that Amelia did, indeed, have diptheria toxoid encephalitis that was vaccine related in October, 2009. 


If you would like to read more about Amy's new diagnoses, click the links below to read some general information about the conditions the doctor found:

  • Secondary moderate immunodeficiency
  • Bone marrow transplant for secondary immunodeficiency (notice there were 148 patients but only 14 were included in the study: what happened to the other 134? Of the 14 included, 2 died and the condition of 2 more are unreported. Is BMT really that successful for t-cell immunodeficiency? Aaron and I are skeptical.)
  • A basic overview and diagram of the immune system, including the relationship of the lymphatic system and bone marrow. The green areas of the diagram are the parts of Amy's body that are functioning on "high", and the bone marrow is what is not functioning well.
  • Understanding where the cells of the immune system come from and how they differentiate to become either lymphatic or blood cells. If you are interested in stem cell research, this is a good introduction!
Amelia's frame was not hidden from you when she was made in the secret place: Your eyes saw her unformed body; all the days ordained for her were written in your book before one of them came to be. (from Psalm 139)