Tuesday, February 24, 2015

Few Steps Forward, Few Steps Back

Ava's ANC was low again today, so she had to get another dose of G-CSF. Her low ANC also meant that she couldn't start the sirolimus as planned, since sirolimus is an immunosuppressant and would drive her ANC even lower. Depending on how long Ava's low ANC persists, this can also delay their return home to Chicago.

Low ANC also means Ava is more susceptible to infection. The appearance of a cold sore on her lips reveals that the HSV is active again, so they will discuss a treatment plan. The last reading of CMV (another virus) was zero, indicating that the virus was no longer active (therefore dormant), and we pray that this remains dormant.

Meanwhile, the adrenal test that was done to assess if Ava's adrenal function has been reactivated came back undetectable, meaning that her adrenal glands are not working right now. You may recall that long-term steroid treatment suppresses adrenal function, making the body think it doesn't need to produce the body's natural version of steroids. Now that Ava has been weaned off steroids, her adrenal glands need to kick in and start producing again. Since they are not right now, Ava will need to take hydrocortisone three times a day until they do. The concern here is that adrenal suppression can result in adrenal crisis, which is a life-threatening medical emergency. Typically any additional demands/stress on the body (e.g. infection) can trigger adrenal crisis. As a result, Mike and Esther have been trained on how to draw up and administer an injection in the event that Ava goes into adrenal crisis (similar to giving an Epi-pen for anaphylaxis). The doctor said Ava's adrenal test was extremely low, the lowest they've ever seen. It is likely that Ava will regain adrenal function at some point, though we don't know how long the adrenal suppression will persist.

It is unclear as to the cause of Ava's low ANC. The steroids and the antiviral for CMV that Ava was previously taking can falsely elevate levels, so the discontinuation of those meds can explain some of the decrease. It is also possible that Ava's body is fighting something. Admittedly, in the back of the mind is the possibility of cancer relapse, though the doctors aren't quick to suggest that at this point. Still, the reality is that there is no guarantee of outcome. Ava's been doing well for the most part up to this point, but we know this is no promise for the future. The scary thing is that people with cancer (especially kids) can decline so rapidly, it's hard to really prepare for what's ahead.

Mike and Esther's hearts are heavy for families they've come to know whose children are really struggling in their battle with cancer right now. They would appreciate any prayers lifted on behalf of these children and their families. In particular, they ask for prayers for sweet Allistaire. Allistaire is a 4 year old girl who was diagnosed with AML at 21 months of age. After having a transplant, she has since relapsed and returned to Seattle several months ago for a second transplant. But after chemo wiped out her ANC in preparation for transplant, she ended up in the ICU with a serious infection and no immune system to fight it. After another serious infection, Allistaire is now facing heart failure, another obstacle to transplant. If any of you are prompted to pray for Allistaire and her family, your prayers are appreciated. You can read more about Allistaire's story here.

For the Lee family, please pray:
  • For protection against infection
  • For return of Ava's adrenal function
  • For Ava's ANC levels to go back up
  • For no cancer!
  • For continued faith and peace despite an unknown future
  • To continue finding the joy that God weaves even alongside pain and suffering

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