Saturday, March 12, 2016


Ava was discharged on Thursday and will finish her round of chemo (outpatient) this weekend. (She is on cyclophophamide, etoposide and bortezamib for those who are curious). The hope is to put Ava in remission in preparation for a second transplant. As you recall, Ava wasn't disease-free before her first transplant. It's possible that the new marrow had some type of immune effect on her residual disease. However, if Ava's extramedullary disease isn't gone before transplant this time around, the transplant will have very little benefit because graft vs leukemia effect doesn't really work well on disease outside of the bone marrow. Keep in mind that even without disease before transplant, the overall chances of relapse are high with leukemia cutis.

One "positive" thing about the tumors on her skin/body is that they are visible, so we will hopefully see them shrinking in size with the chemo.

This round of chemo has been a bit hard on Ava, both physically and emotionally. She's had some pretty bad nausea, but thankfully, she got IV Zofran which really helped. Other side effects of the chemo include hair loss (not sure if Ava is prepared for this) as well as low blood counts all around. Ava may need transfusions in the near future as her counts are anticipated to drop. This is also when it is very important to avoid germs as she won't have the ability to fight infections. Emotionally, Ava is not like her usual self and finds any new pains/discomfort unsettling. She was quite relieved when the dentist confirmed that her oral pain was due to a new tooth growing in and not something else. With the immunosuppression, Ava's cold sores started flaring up again, but thankfully it seems to be controlled with Acyclovir. If it flares up again, Ava will need to be admitted, as any infections can be life-threatening with no immune system.

In the midst of these things, God's hand has still been evident.

  • Though initially strangers, some local sisters in Christ have been a HUGE blessing in providing emotional and tangible support. The prayer support has been a lifeline for Esther, and all the texts, checking in, and care for Gwen and Jude has given her a hands-on support when she anticipated loneliness and isolation away from home. Words cannot express the appreciation that fills their hearts. 
  • The coordination of meals and provision of gifts has been AMAZING! The Lee family is so thankful for all the packages and food they have received, and they feel blessed like crazy. Every need seems to be taken care of even before they anticipated it. They recognize this outpouring of grace and love to be from the hand of God. Thank YOU for being His hands and feet of such love! So many strangers who have given a cup of refreshing water to weary souls. Your gift of love does not go unnoticed by the Lee family nor by the Lord. May He bless each one of you 10-fold for your giving. 
  • Praise God for good days like today, where the family can live in a way that feels "normal." It's a welcome oasis in a sea of uncertainty and many "bad" days. 
  • We celebrate that even while Ava's body is trying to fight the cancer within, she continues to grow, lose teeth and experience the pain of normal development. We look and pray for even more of this type of growing in days, months, years to come. 
  • Praise God that Ava's herpeticum (cold sores all over her body) were controlled by Acyclovir and that she can be out of the hospital. 
Prayer requests:
  • Ava's herpeticum will remain at bay and not flare up (nor any other viruses like CMV, for that matter) 
  • Ava will reach remission prior to transplant. (Really, that God would heal her in any way He chooses). 
  • God would grant peace, comfort and strength in Ava's inner spirit as she experiences all that is going on in her body, that there will be no place for fear or anxiety. 
  • God would grant this same peace to the whole Lee family, adults and children alike. 
  • Regardless of what lies ahead, that they will keep their eyes fixed on Jesus, the author and perfecter of their faith; that they may "hold unswervingly to the hope we profess, for He who promised is faithful" (Hebrews 10:23) 
Thank you so much for your steadfast support and prayers.

No comments: