All day, I've dreaded writing this post.
It's not the kind of news that a mom likes to share. Especially this mom.
The MRI today revealed the reason for Ben's severe headaches last night. The headaches and vomiting that led us back to the ER and then into the ICU. The tumor has grown. Tripled, actually. In just three weeks since his brain surgery, Ben's tumor has grown three times its original size.
The neurosurgeon is just as shocked as we are. He has treated a few Stage IV Glioblastomas in his experience, even in young kids like Ben. Some older, some younger. And never has he encountered such an aggressively growing tumor. Never. Even after a week of radiation and chemotherapy, they would have anticipated it to slow growth, if not stop it completely. The idea of an aggressive treatment like this was to starve the blood cells feeding it. So hopefully, it would shrink. But it would appear that the it had virtually no affect at all. This cancer defied everything they thought they knew about it.
The good news is that they put off the idea of another brain surgery. AND they set him home. My poor baby was so excited to be freed from all the twisty wires that have entangled him, the beeping alarms, the hourly neuro-checks, and get the green light to sleep in his own bed! Then the fact that he wouldn't have to go to Roswell anymore? Wow! It felt so good to tell him that tonight.
The bad news is the reason for those cancellations. They wouldn't be helpful to us. With the rate at which this tumor seems to be multiplying, Dr. Li couldn't recommend surgery. The swollen brain would continue to swell as the tumor grew and he would have a difficult time trying to put it back together, even if he was able to get 80% of it out, best case scenario. Because the tumor would just keep growing, it would keep coming back. And surgery would definitely interfere with his speech, movement and memory because of where the tumor is located. Treatment seems useless if it didn't even seem to make a dent after a full week. Especially since we'd have to wait an additional two weeks for the brain to heal before we would start radiation and chemo again.
We just don't have that kind of time.
Our best option? To take Ben home. Keep him comfortable. Prescribe him a higher dose of the steroid to help manage the pain from the swelling. Try and preserve as much quality of life. Because we're talking about weeks. That's it. Not years, not months, not "well, if you manage things pretty well, there's no doubt he won't be a healthy adult!"
I'm not entirely sure this news has really set in.
Instead of watching my otherwise healthy four-year-old grow up through the years, I am going to be watching him die over the course of a few weeks.
Dr. Li told us to watch for signs of deterioration. Loss of movement on one or both sides. Slurred speech. Difficulty putting ideas together. Loss of coordination. Seizures. We may be calling Hospice to help assist us with this process. Hospice. The group we called to help with my 97-year-old grandfather last spring. The group we called to help my mother-in-law survive her last few weeks on earth.
Yeah, this information has definitely not settled in yet.
They still can't believe he hasn't forfeited any of these physical attributes yet. He is so high functioning. He follows their finger with his eyes, has had no loss of coordination, has great muscle control and his speech is just as powerful as it ever was. If it weren't for his headaches, we would have never even looked for anything that even resembled a tumor. It's as if the kid you see in the MRI scan is not the same as the one in the hospital bed.
And yet... God.
The stage is definitely set for God to do a miracle. If Ben is healed from this most aggressive of the aggressive tumors, everyone will know that it was the Lord. There would be no other logical explanation. Medicine has carried pretty much as far as it can. He is definitely capable. And yet He is sovereign. He is not obligated to do anything. He owes us nothing.
You have no idea how difficult this is for me to say.
Ben is not mine. He is not Andy's. He belongs to the Lord. I don't understand - nor do I think that I will ever understand - why God is allowing us to walk this road. Oh, how I wish we didn't have to. I've prayed time and time again for God to take this cup from us. Nonetheless, here we are.
And so we will continue to move forward. We will treasure any amount of time God allows us to have with Benjamin, a little boy who has truly changed our family. And a little boy who I know God will use for big things in the future. No matter which side of heaven he is on.
As much as it pains me to think about Jack and Megan losing a brother, I can't even begin to think about them losing a mom and dad, too. I refuse to be bogged down by the tragic nature of this horrible diagnosis. Our kids need us. All three of them.
And you better believe that I will not give up praying for a miracle.
God is able.
"Jesus loves me, this I know. For the Bible tells me so. Little ones to Him belong; they are weak, but He is strong."
Carry us, Lord Jesus. Wrap your loving arms around us and let us feel Your presence. You are the only One who can bring healing to our son. But not our will, but Yours be done.