We had a PET scan yesterday morning and were so hopeful with positive results. But when we sat down with our doctor, we could just tell it was more bad news. And it was very bad news. Here is the picture that we were given of our sweet boy’s scan…
Yes, that big thing in the middle of his little body is the tumor. I have to tell you my breath was taken away when I saw how much it was engulfing him. It is just plain devastating. We are devastated.
The doctor shared with us the reality of where we are with Bennett’s treatment. It wasn’t easy for her to say or for us to hear, but she said that in her medical opinion, they do not think they will be able to cure him. And curing him means that they shrink the tumor enough to have it surgically removed.
They have been giving Bennett the strongest chemo that fights Rhabdoid tumors the best, and his has continued to not shrink. This last round of chemo was the most promising because his liver counts got better and the tumor didn’t grow any more from last week. But it is so aggressive, that they don’t think they will be able to give him enough to shrink it drastically.
So now what? Well, we were given many option to pray over this weekend.
- The first option is to switch over to hospice treatment. They said it is completely understandable and acceptable for families to get to this point and choose not to go through a long and painful battle. We are NOT choosing this option. We feel God has given us a fighter and is calling us to fight along side him.
- The second option is to move to an experimental drug that is having some success in children with Rhabdoid tumors. It would actually be risky to move to this treatment now for a lot of reasons that would take a long time to explain.
- The last option is to continue with chemotherapy but stay specifically with the drug that has at least stopped the growth and add radiation therapy as well. The thought is that this strongest drug combined with focused radiation could possibly get us to the point that the experimental drug would be more successful.
We are currently leaning towards combining radiation and chemotherapy together but are taking the weekend to pray about it and let God tell us what to do. But we are not done fighting and we know Bennett isn’t done either…and we pray you will continue fighting with us too!
So as I sit here and think of my little baby, I still believe God will heal him. I pray it is to heal him on earth, but he is still healed through heaven. And that brings me such relief…Bennett is part of God’s story.
I’ve been reading a book a friend sent me called Unfinished, and the author talks of three stories that we have the option of being a part of. Here are those options (all taken from the book)…
- Believe There Is No Story – People who choose this option simply believe that there is no story. Everything we see and experience is totally random and without meaning. We are just meaningless species on a meaningless planet in a meaningless universe.
- Make Up Your Own Story – People in this story often don’t care exactly how they got here or why they are here. They make up their own stories about what’s important and what brings meaning. Often they believe you should do whatever you want as long as it doesn’t hurt anyone, the one who dies with the most toys wins, we can all find God in our inner self, all religions are just different roads to the same truth and so on. For seventy or eighty years they move from one event to the next, like balls in a pinball machine, bouncing off bumpers with lights flashing and bells ringing all the way. They are busy racking up points and bonuses until the ball finally goes down the drain, the noise stops and the lights go out. Game over.
- Become Part of God’s Story – People in this story believe there is an author who wrote it–one who created the world and the universe we were born into, one who cast the vision for the expansive plot and story narrative that has unfolded over eons of time, one who began the story and also will bring it to its conclusion, one who gave life to each and every character in the story. And we are designed to play a key role in this story. A role that glorifies God. We have a purpose.
What story are you choosing right now?
I can’t tell you how grateful I am that we are in God’s story. Bennett’s life has a purpose. And if his healing comes by way of heaven…his life will truly just be starting!
This mama’s heart is filled with joy knowing that truth. Yes, there is sadness in there too. But we are living by faith in a God who has created an amazing story that we get to be a part of!
Therefore do not throw away your confidence, which has a great reward. For you have need of endurance, so that when you have done the will of God you may receive what is promised. Yet a little while and the Coming One will come and not delay; but my righteous one shall live by faith…But we are not of those who shrink back and are destroyed, but those who have faith and preserve their souls. (Hebrews 10:35-39)
Now we need to pray. And pray a lot! Ben will probably write a post this weekend about setting up time slots every hour of every day to cover Bennett in prayer. He needs it. We need it.
So get ready to fight some more, my friends. It’s not over!
Be joyful in hope, patient in affliction, faithful in prayer. (Romans 12:12)