Our treatment plan is a long and extensive one that changes often. It ranges from inpatient hospital stays, to at home nurses, to waiting at home for blood numbers to rebound, and everything in between.
Our treatment plan is very regimented as we chose to be 'on study'. We wanted to help researchers so that no family in the future would have to endure this. Right now they are just watching carefully and following protocols religiously. We didn't get into the clinical trial... well we did but were randomized into the normal treatment (Traditional European Method) and not the experimental treatment leg of the study.
Our treatment plan is 9 phases long and will take about 2 1/2 years to complete (9 months down... a few more to go...).
Each phase is the broken down into different parts that each look different with different medication. We are currently finishing phase 6 part 1 and will begin part 2 after the Fourth of July. Then on to phase 7. We are blessed that phases 6-9 are all out patient. Our inpatient hospital stays are behind us(45 days inpatient, split between 4 different stays with a few days of rest and togetherness in between)!!
Leukemia is different than other cancers because no matter what (I've asked every doctor and nurse), patients being treated for Leukemia stay on treatment for the full 2 1/2 years.
Avery has been in remission since November (praise God), yet we continue on with treatment.
It has been explained to me in multiple ways but the two that have stuck the most are as follows:
When you have strep throat your medication is for 10 days although you start feeling better after 3 days you stay the course so that the illness doesn't immediately come back.
Leukemia is like a weed, it takes over the pretty green fields. When the field is treated the weeds go away but maybe just in the surface we can't be sure that all of the weed is gone under the surface as well. Just because we can't see it doesn't mean that it isn't there. So we have to keep treating the field to keep it beautiful and green.
Sadly only time proves the Leukemia is no longer there, so onward we march. Although I know deep down in my heart that Avery is healed and whole. This disease died on the cross 2,000 years ago and she has received her miracle. In February, they did another bone marrow test to decide whether Avery could be randomized into the case study or if she needed high risk treatment. Her bone marrow came back completely clean. Normally they test to the 10,000th degree but they couldn't find anything so they tested to the 1,000,000th degree (the smallest trace amount that science is capable of detecting) and it was still ZERO. The doctor said he had never seen so many zeros and not even that but that he has never seen anyone that didn't have a detectable amount. He told us to frame that paper work because in his 30 years of oncology he had NEVER seen this before. I kind of laughed it off, yes we were grateful but also we have been getting negative results like this since November, showing Avery is cancer free.
BUT, Spencer said it best, 'Who else can frame their miracle?'
So when you visit our house and see a framed white piece of papers with a lot of zeros on it, you too can see a real life miracle! Since this date, Alex and I have stopped focusing on Avery's recovery. Yes, we still give her all the medicines and go to all the appointments and are cautious about where we bring her, blah blah blah. BUT we are choosing to focus on how we can bless OTHERS during the rest of our treatment plans. We pray for healing for everyone at the clinic and hospital. We bring gifts for other patients and the nurses. We are planning a non-profit in Avery's name that serves families with children who are neutropenic. We smile as much as possible, because honestly the waiting room to the oncology clinic is one of the most depressing places I've been with people sitting there with heavy hearts and faces. Will you do me a favor and when you pray tonight, will you not only continue to lift us up in prayer but all those going through something similar? Having a child facing an illness is not easy but prayer changes things. We have seen it and we believe it. So tonight, help us lift up others for strength, healing, understanding, peace and that they come to know Jesus Christ as their lord and savior!
Until next time when we update you on our continued journey...
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