Wednesday, June 15, 2016


(From Facebook):
We just finished talking with the oncologist and plan to go with the medium intensity chemo. Ava's disease is so advanced at this point that it is creating problems for some of her organs. With that in mind, and the fact that Ava is still sick and might have a fungal infection, this is the safest route to take.

Her oncologist clarified the issue with CNS relapse. The reason it changes our plan going forward is because T-cell ALL relapse in the CNS is extremely hard to treat. Since Ava's disease is more unique with both T-Cell and AML markers, it is hard to say how the disease will react. If you remember, her leukemia has always seemed more driven by the T-cell component but the AML markers of her disease make Mylotarg a very good chemo to treat her with. Of course, the higher intensity chemo would have been a better choice but Ava is too frail to receive that right now. If this round of chemo shows promise by getting rid of the majority of her disease, we may be able to do a second round with higher intensity chemo.

However, it still stands that CNS relapse after transplant raises your risk of relapse considerably. So does extrameduallary disease, and so does leukemia cutis.

Essentially, Ava has three terrible prognostic factors standing in the way of her chance at a second transplant and disease-free survival.

We know things are looking bleaker than ever before. But we just can't give up. Ava is not ready to stop fighting. If you could see the way she still greets people with a smile despite her body shutting down...

We are asking the Body of Christ to seek the Lord with us concerning Ava. Her life is carried so preciously in His hands. And who knows, He may heal her for His glory. But if not, the glory still belongs to Him.

Please pray:
1) That this is not a CNS relapse. The pathology report has not confirmed it yet. Although it looks very much like a relapse, it could be a process of infection. It is unlikely that is the case, but stranger things have happened.

2) Ava would tolerate the chemo well and not get any sicker as her immune system crashes. We pray that she doesn't have a fungal infection and that her current parainfluenza virus would quickly be resolved.

3) We would find a good pain management for Ava so that she wouldn't be in pain but also have more wakeful moments. The medication she is currently on makes her extremely drowsy so she spends a lot of time sleeping.

4) That the chemo would clear out her disease completely and that she would have a chance at a second transplant.

I have been allowing myself to believe that Ava will make it through this and that her story would bring so much glory to God. We know that you are praying this alongside us, and we are so thankful for those precious prayers.

1 comment:

K Manning said...

Prayers for you & your Ava. Tears Fill my eyes as I sit here with my daughter in the infusion center getting chemo for her ALL w CNS relapse reading your story & prayer request. It's such a scary thing, all we can do is be prayerful, hopeful & supportive. After reading research studies until my eyes & brain can't take anymore, I googled GOD's cure & I came across this post. One thing I have used for my daughter is Wheatgrass supplements. Many people have told me they know someone who was cured by Wheatgrass juice. The fresh Wheatgrass is the best but is risky when counts are low bc of possible fungi or bacteria on the grass bc it's unpasterized. At the very least it has offset side effects of chemo & provides a nutritional boost equivalent to that of eating a boatload of leafy greens high in antioxidants & vitamins which the body needs to make healthy cells which is a tremendously good thing especially when appetite is low & I know she's not getting adequate nutrition. When counts are good Wheatgrass shots are optimal. There is very little clinical studies done on this bc let's be honest, medicine is a huge money making business whereas Wheatgrass is dirt cheap. There's no significant money to be made in wheatgrass. But wheatgrass is the only thing on earth that has the closest molecular structure to blood with the only difference being blood has iron & wheatgrass has magnesium so it is thought & believed that fresh wheat grass helps make healthy blood & keeps the body more alkaline in which cancer cells don't survive as they do in a more acidic environment. Most of us are acidic bc of the foods we consume. Anyway. I AM NO EXPERT but for whatever reason I came across your post today & cried & prayed for your Ava. That's all I was going to initially say was that my prayers are with you but then I felt led to tell you what I know & have learned. I pray for peace for your family & healing for Ava. God bless you all.