Lots of things have changed since my last post. On Saturday late afternoon, after my mom and Ryan left to go back to Evansville, I began to notice Keegan had stopped moving his legs. I did some playing around with them; tickling his toes, running my finger up and down his leg, etc. He didn't move his legs and barely moved his little toes. I freaked out cause that is what I do and called the nurse. Well, she didn't come right away so I thought what the heck I will make him a bottle, slide a chair over to his IV side of the bed and feed him. As soon as I picked him up his little legs were dead weight. I then held him like I always to do feed him and he started to scream (from pain is what I am thinking). I went to put him back in bed and try to get him to weight bear on his feet-NOTHING, his legs were like jello. I then placed another call to the nurse to tell her to get in our room right away.
A nurse came in, I showed her my concern and ran to grab our nurse who was just finishing up her lunch. They started trying to get him to move his legs and NOTHING. A few calls were made to Dr. Shih and Dr. Ackerman and a flurry of Nurses, Residents and Fellows quickly came in to assess the situation.
Dr. Ackerman, bless her heart, ran up a couple of flights of stairs, performed a neuro check and said the decrease in movement can be one of two things. Either the tumor is growing more into his spine and compressing it causing him not to be able to move his lower extremities OR it could be from the swelling that the tumor is causing. Either way its a bad situation.
Dr. Shih came in a short time later with a Grim look on his face telling us he was stopping all chemo and we were moving on to radiation ASAP and restarting HIGH doses of steroids to keep the swelling under control. He doesn't want to keep him on steroids long because of long term side effects but we are trying to relieve pressure to this very sensitive area. ::On a side note, we not only are watching his legs but also his bladder and kidneys because with the loss of the lower extremities we run a risk of problems arising if he cant empty his bladder::
Dr. Shih called Dr. B, the pediatric radiation oncologist, out of Bloomington and wanted to get going on radiation that evening. The only problem being Keegan had just inhaled a 4 oz bottle and since kids are sedated for CTS, MRI's and radiation that posed a serious risk to aspiration when waking up.
A decision was made on Sunday that he would start "regular" radiation at 9:30 am on Monday morning in hopes to try to get some leg movement back. Time is of the essence and we needed to get moving. He went NPO at Midnight Sunday and we were down in the IU cancer pavilion at 9:30 Monday morning.
So as you can see "the best laid plans of mice and men often go astray. We thought we had a plan of attack and that all changed in a few mere hours. So what next is what you maybe thinking......Welll......
Today we are going via ambulance around 1 est to the Proton Beam Clinic in Bloomington Indiana to get set up for treatment, we will then come back to Riley where Keegan will get "regular" radiation Wednesday, Thursday and Friday morning. Relax on Saturday and Sunday while be monitored and one more round of "regular" radiation on Monday morning.
Hopefully after today and this week hanging out at Riley getting radiated Bloomington will be ready for us and we can leave Riley to head to Bloomington early next week. This is what he hope to happen.
We do know that his leg movement is time sensitive but the radiation will cause the tumor and surrounding area to swell before it starts to go down so we might not see movement right away. Dr. Ackerman is pessimistic about regaining any leg control at all and in a weird way I can handle that if we can simply get rid of this damn cancer.