New plan...God’s all along

 

Good morning everyone. I want to first that God for this day, and for the life of Emerson. 

At the end of last week I felt the call or need to hold a prayer vigil for Mac. Now many of you have been praying earnestly since his diagnosis. Believe me there have been valleys and mountains, and we are grateful for your time spent before the Lord. 

This past Sunday we had a call to prayer in front of our house, amlong with over 50 calls into a zoom meeting. Totally setting another one up! It was a joy to see so many people, but to also hear their prayers being lifted up.

Knowing that our trust in you Lord has not changed despite the circumstances.

Here is the update

Elvin and I have decided to move forward with this trial chemo. 

*Veneteclast...read about it

I know this was through a lot of questions and research and through prayer. Right now it’s more about giving Emerson quality-of-life with minimum amount of pain. Currently his blast count is over 60%, and he has extramedullary symptoms (lesions to his skin, swelling to eyes and head) 

Obviously the prognosis is not good as it appears that blast, which are immature white blood cells are finding places to reside outside the bone marrow. Hence the skin lesions the facial swelling. So starting this new medication hopefully and prayerfully will help. 

Oh yes, we have been for almost a week using a THC:CBD combination. I can personally say it’s been helpful, as my poor mac has been in pain. Though it would be nice to know what hurts, I’m not sure I could handle Mac being verbal. 

Now to even get this medication this mommy had been doing her research even prior to those stinking blast returning. That time a few weeks ago when Emerson had been inconsolable.

I came upon this documentation.

Waldo on weed 

That was followed by

Weed the people

One thing led to another, a lot of researching and reaching out to the actual family members that were part of the films. Digging deep. Only God led me to watch these documentaries. To see some other possibilities. 

The doctors don’t have an issue with us currently using the THC in the CBD. We are still trying to get a high concentrated version to utilize that as well. Right now it’s mostly the narcotics  they want to prescribe us at home, for pain. I think narcotics have there place, but at some point in time he would basically be asleep all the time. Rest is good though for Emerson. These past few days have been tough, especially at night. I plead with the Lord to have his pain put upon me, for I would gladly suffer. Now we obviously don’t want him to be in any pain or discomfort, but hopefully we can utilize the THC and CBD products and not have to use so much of the narcotics. 

Back to the new chemo: today will be his second dose. You guessed it we get to give it to him through his g-tube. Thank you Lord for that, as any attempt by mouth would have been futile. 

This new medication is potentially going to allow us to be home which will be a blessing to just spend time with him and the other kids during this time rather than being cooped up in the hospital. Though I have my own fears of complications occurring at home, my heart can’t fathom being away from my much needed support.

Father God, you are good. We give you praise despite the circumstances. Lord God we know that you are a loving, and call children to you. We are thankful that there has been another option given to us. Though we know it may not having curing properties, it may greatly help manage symptoms. We are still trusting in you and pray for a miracle. May your will be done. In Jesus precious name Amen