So after I sat in that lonely conference room receiving the worst new a parent could possibly hear, I had to stew in my juices until I could talk with Ryan. You see Ry was in the car on the way to Indy to spend a couple of days with us after his couple of days at home to work. I do admit I got online (face book of coarse) and confided in two GREAT women who I look up to dearly. Joanna and Karen helped me through the first couple of hours until Ryan could be by my side to cry with me.
After Ry got to Indy we started talking I told him that the MRI showed that Keegan's tumor had grown back. I told him how Dr. Shiy sat me down and explained to me that they are not 100% sure its Medullo anymore and not some form of a REALLY bad tumor. I showed him the drawing that the doctor had done for us showing us our options, these are what our options were/are ( I should add they were stopping chemo immediately and not going to continue the rest of the cycles).....
- Go Home-either with "help" or on Hospice (just for the record I HATE the word HOSPICE!!!)
- Surgery-We could go in and try to remove this "tumor" but as shown it will just grow back again and why put Keegan through another crainotomy and the recovery with much higher risk of infection.
- Full Brain-NOT AN OPTION-this would drop Keegan's IQ immediately down 15-20 points-making him severe and profound metal retardation
- Focal radiation- This radiation would be a beam directed to the specific tumor and try to kill off alot of those tumorous cells.
- Oral Chemotherapy-(Maintenance) is what they call it. It would be the oral form of Etoposide (this drug is known to cut blood supply off to tumors.)
- Clinical Trials-We could look into clinical trials at any of the larger children's hospitals throughout the country that participate in them. I asked him to look into trials and second opinions at CHOP-Children's Hospital of Philadelphia, St. Jude, and Boston's Children Hospital.
I have heard there are troubles of more than one kind.
Some come from ahead and some come from behind.
But I've bought a big bat.
...I'm all ready you see.
Now my troubles are going to have troubles with me!
So we have had a chace over the last week to speak with our neurosurgeon Dr. Ackerman and more to Dr. Shiy along with Dr. Chang the Radiologist out of Bloomington. It has been a very hard decision yet a very easy one, we are not ones to give us, neither is Kee so we have opted not to just go home to "die". We are going to continue our fight and I hope you are there to support us.
Here is the "plan":
We decided we wanted to try the proton beam radiation out of Bloomington Indiana. You can find more information here MPRI. It is going to be 6 weeks of radiation EVERY.SINGLE.DAY. We will be living in Bloomington during the week at Jills House, its in walking distance and seems very nice! It has been reiterated to us and we are keeping it in the back of our mind that if the quality of Keegan's young life is not worth the quantity we can back out of the treatment at any time. This was a relief to hear, just in case we don't want to finish. This was the easy decision believe it or not...the harder decision lied it the what if realm.....
What if this thing is not tumor? What if this is something completely different? Dr. Shiy mentioned that he was not 100% that it was the original tumor coming back. So he said that we could possibly do a biopsy, my thought was sticking a big ole long needle into Keegan's head, sucking out some of the tumor in a syringe and then testing it.....I was WAY wrong, a biopsy on a tumor that resides in the ventricle would involve another crainiotomy and recovery time which would slow down the chance to get to radiation. He also said we would have a hard time convincing Dr. Ackerman to perform the surgery, he had already talked to her about it.
The next day Dr. Ackerman came by, we discussed it and she said she had talked the situation over with her colleagues and thought it really was not an option thus putting it off the table for us. SOOOOO then my thought (and I said this out loud) was...what if we are radiating regular old brain tissue...that is not good. So the Doctor left and the next day we were presented with another, lets call it, "Do you want to?" So the biopsy was out of the question but both Dr. Ackerman and Dr. Shiy kept thinking about our situation and neither on of them just wanted to radiate without being 100% sure. Answer: MRI's. They are not only going to re perform the one done last week on a better machine but they are also going to do a perfusion MRI (looking at the blood flow into his tumor) and a Fiesta scan where it takes some different images of the same tumor.
I should add we also "added" the oral etoposide to our "plan" after we are done with radiation in hopes that it also helps to kill the food source, if you will, of the tumor.
While I am sad that our journey has come to this, I hold hope that either our Miracle is in the second MRI or the fact that the Proton Beam Radiation is only offered in 6 places nationwide with one being only an hour and half from home in Bloomington. I cherish each day I have left with our baby, we don't know when will be his time but we are planning on fighting like hell and hoping for a miracle.
Because of the "terminal" label, I have applied for "wishes" for Keegan. I want to take Keegan to the beach so he can feel the sand, see the seagulls and feel the warm sun on his face. This is in the works whether it be with an agency or taking him ourselves. We have family pictures scheduled with one of the best photographers I know and we are going to have Keegan dedicated at our church with family and friends surrounding us.
I am still hoping for a miracle but planning on what is to come.....