This time yesterday we were at MSKCC preparing Keegan for the MRI that would get him admitted to the 3f8 trial study that I personally believed would be our miracle cure.
Right now I am sitting in Rom 5126 at our good 'ole Riley Hospital for Children.
To get today and all the events that I am sure are to follow I will catch you up a bit on what happened yesterday July 22, 2010. I was up at 6:15 and got ready for the day. Showered, dressed, you know the whole bit. Got the little one ready and headed out to to MSKCC around 8 am or so.
We got there his port was accessed, they drew blood, cleared him for anesthesia. MRI started an hour late around 11:30 EST and was to last a hour and half to two hours. Ry and I tried our best to occupy our time because those hours seem to drag.
Around 1 or a little after they came and got us telling us Keegan was waking up and we could come see him. There policy is very different from Riley's in the fact that they just let him go. We didn't try to make sure he drank and held food down or anything. So off we went to the pediatric waiting room to talk to the doctors. No sooner did we sit down than they called us back to "speak to us".
We entered a room where a "team" of medical professionals had assembled. The lead being a neurosurgeon. I don't really even remember how the conversation started and when the tears started to fall but I remember just looking at Ry and looking at Ry holding our precious baby boy that they were give us the worst news we have heard in a long time.
In short, the tumor in his spine has grown back. Not only has it grown back in the exact same spot that Dr. Ackerman ressected the previous one in May but it is now big enough that it is blocking the flow of his Cerebrospinal fluid which could cause a host of many other problems not to mention the swelling and pressure it could/can be putting on his bladder and Kidneys.
A neurological exam was performed post sedation which made me rather mad because he was still in lala land so his muscles and reflexes were definitely not up to par but anyway the Dr. at MSKCC said at this time we were out of running for the 3f8 trial since this tumor was impeding the flow of the CSF. He wanted us to get home immediately to be admitted to Riley for a plan to be put in place, the longer we waited the more damage could be done.
I called Dr. Shih at Riley, talked to him through tears and passed the phone off to the neurosurgeon we were working with. The neurosurgeon briefly explained the recent findings, they exchanged email addresses and the Dr. in NY told Dr. Shih he was going to give him a large bolus (dose) of steroids to get us to Riley and we would be on our way.
We got a large dose of steroids via IV, meanwhile MSK was getting the crap they wanted to send home with me ready (a disc of the MRI, medical records, etc). Ry got on the computer booked a RIDICULOUSLY expensive last minute flight from JFK to Indianapolis and Ry's bro Bret volunteered to come pick us up at the airport (we love you B!).
After the IV dose was done, we decided we needed to hurry things up a bit. Our flight was to leave at 8 or a little after and it was approximately 4 o'clock and we still needed to pack up the Ronald McDonald Room, hail a cab, and get from Manhattan to JFK to check in with Delta and get through security in order to board the place around 7:20. Ry and Keegan headed back to RMH while I waited....and waited...and waited for the disc of the images to come up.
As soon as I had that precious disc in my hands I ran in flip flops with a backpack on my back from 68th Street uptown to 73rd. When I got to RMH and to our room I just started throwing all of our stuff into bags, not sure what is where and who has what but we did manage to get it all in our bags. I cleaned our our kitchen cupboard and we headed to checkout.
The girl at the desk took FOREVER to check us out and we were in a hurry, by this time is was around 5 and we were cutting it close. I had asked the receptionist to get a number for a cab for us but she was very UNCOOPERATIVE so one of the RMH volunteers helped us get our bags out to the corner of 73rd and York because MSKCC called and they wanted me to swing by the hospital on our way to the airport to pick up some steroids that I would need to crush, put in liquid and give via G tube to him to keep the swelling down.
We hailed a cab, loaded up, drove a few blocks where I quickly ran out of the cab got in the elevator to the 9th floor where they told me someone would be waiting with said drugs (but they weren't) and went in search of said person to get the drugs and get the hell outta dodge. I finally got the drugs took the elevator down to the 1st floor RAN to the cab and we were off.
I thought I was going to die in the cab ride out to JFK, ask the people I was texting with, it was quite scary and it being rush hour on a Friday did not help. BUT we got to the airport safely, checked in and even grabbed a bite to eat at Starbucks with my birthday gift card!
We then headed to terminal 23rd, waited for about 20 until we could board and got settled in for our relatively short flight to Indy. Upon landing, Bret picked us up and got us to the emergency room at Riley (pretty short drive).
We checked in, Dr. Ackerman happened to be on service and wanted to see the disk they sent home with me. We got put in a room and within a short time Dr. Ackerman came in with a screen shot of his spine. While I had seen the images of the new lesion on the computer screen in front of me in that small room it still shocked me when it was placed in my lap. Dr. Ackerman went on to tell me that the new tumor was inoperable as it was INSIDE his spinal cord and if I looked a little closer at the picture there were two new smaller lesions under the large one.
This was pretty devastating because on the plane ride Ryan and I discussed how we thought we should proceed from here. We thought #1 surgery, #2 Proton beam radiation to the brain spine and extra boost to the new tumors and some chemo along the way somewhere. Those hopes were quickly dashed when Dr. Ackerman said she could not operate. SUCK!
So where does that leave us??? Dr. Shih happens to be the doctor here this weekend (thank the good lord) so this morning we are looking at putting a plan in place as to where to go from here......
Its really hard to have hope if the face of this nasty nasty disease, our family is devastated as well as our friends and many of you I am sure. We need prayers, we need a miracle and we need Keegan to be healed. This has been going on long enough and the poor guy just cant seem to catch a friggin break!
So I beg, and plead down on bended knee that if you pray, pray for knowledge for our doctors, stamina for Keegan to keep fighting, faith for our family and Hope this we can beat this.
Saddest part is I haven't even been able to share our wonderful vacation with all of you yet......
Till I have more news and plan~