Riley Rutledge-Journey's End

Late summer 2014, our 13 year old son - Riley - started practicing for the Freshman Football team at High School. Although we noticed he was very tired, and not eating much, we believed it was a result of 4:00 workouts in 80-90 degree heat and didn't worry too much. When he started complaining of dizziness everytime he stood up, we got worried.

We benched him from any contact practice immediately until he could get in to see his (new) doctor. He loves football so much that rather than quit, he contined to go to practice -- but didn't participate in the drills. After two weeks he finally had his doctor appointment. She felt it could be a delayed concussion from playing YAFL the year before and scheduled a CT scan for the following week. A small mass was found during that scan that was definitely NOT from a concussion, and an MRI was scheduled for two days later.

As soon as the MRI was done, Riley was immediately rushed to the ER and was admitted to University of New Mexico Hospital on August 24th. A baseball sized mass was found in Riley's left temporal node that was pushing on the optic nerve. The doctors were surprised he wasn't having seizures, and was still ambulatory.

Apparetly we caught this just in time. In his first week at the hospital, Riley had to undergo two emergency surgeries just to relieve the pressure from the tumor. We actually lost him twice, but he happened to be at just the right place with just the right people and they were able to bring him back around. Doctors removed roughly 6-7% of the tumor and sent it off for biopsy to determine what we were dealing with.

During his second surgery, Riley lost  most of the feeling in his right side. He lost 50% of his sight in each eye, and lost his ability to put words together.

While Riley recovered, we found out that we were dealing with Stage IV Gioblastoma Brain Cancer -- a cancer with a very low survival rate in adults. It is a very rare cancer for children to get, so there is not a lot of data out there for children.

Over the next 2 weeks, Riley was able to make significant process with the physical issues and was able to walk, feed himself and speak well enough to be understood.

A "wash" had to be done during the 4th week while Riley was in physical therapy as his wound had picked up some type of bacterial infection. They installed a drain in the wound so that the fluid would have somewhere to go. After several days of antibiotics, Riley was once again on the mend. It was decided that Riley could come home since he'd been in the hospital for six weeks straight. Once he had recovered, a date would be set for the "dubulking" of the tumor.

Riley came home on a Friday, and we were able to attend the final game of his YAFL team and the Rumble in the Rio Police vs. Fire Fighters wrestling event (where his YAFL coach fought as Riley's champion). It was a fantastic weekend, and full of some really great events in Riley's honor.

Late Sunday night, Riley woke up screaming in pain. After an ambulance ride to the hospital, and a mega dose of morphine, Riley was readmited to the hospital. Unfortunately, the "suction" method of drainage we had been using to keep the fluids down was working a little too well. Doctors decided to move to a little less aggressive mode of drainage and scheduled the debulking surgery for that Thursday.

On September 22nd Riley underwent the debulking surgery, and the neurosurgeon was able to remove 90% of the tumor. They doctor also installed a titanium mesh plate to help keep the fluids in place in his skull.  Unfortunately, Riley once again lost all movement in the right side of his body and his ability to speak.

Instead of getting better, Riley started going down hill. He started running high fevers -- up to 104.5! After running several tests, and cultures -- doctors realized that Riley had meningitis -- e.coli and some type of secondary infection. They immediately started him on the strongest antibiotic out there (mirapenem) and opened his skull back up and did another "wash" (5th surgery). They also ha to remove the titanium mesh as it was harboring the infectons. Docs found a lesser antibiotic that would work on both infections and moved him off the mirapenem. We spent the next week or so in the pediatric intensive care unit -- which, despite it's name, is NOT a place to get rest!

Finally, Riley was moved back to the Special Pediatric Recovery Unit. He seemed to be getting better physically, but he was missing that spark in his eyes and that fierce determination to get better. We didn't know if the surgery had taken more than we anticipated or if something else was wrong, but it was so difficult to see him and not know if he was depressed, dejected, or if this was going to be his new norm.

After several more days, Riley was finally allowed to come back home -- for good this time. We were once again tasked with giving him his antibiotics -3 x a day. We were getting to be quite good with this whole infusion thing!

After 9 days, Riley was finally done with his antibiotics and they were ready to start his radiation therapy. However, before he could start he woke with severe pain (again!) in his head.  Riley got to have another late night ride in the ambulance to the hospital.

Riley was admitted late Wednesday night with a severe headache  and a high fever. Morphine didn't touch the headache, but seemed to bring the fever down. We found through trial and error that if we kept his head elevated, the headache would stay at a manageable level. Unfortunately, in order to get a CT scan, he had to lay down -- which kicked everything off again.

They did a spinal tap, and then re-admitted him. They immediately started Riley on the antibiotics he had just finished, and kept him on morphine and Tylenol with codeine. He was finally able to get some sleep.

Thursday morning, under heavy sedation, they did an MRI on his head. The only thing they found was some slight "debris" in one of the ventricles, but it wasn't something they were originally concerned over.

Over Thursday and Friday, Riley fought with high fevers, severe chills with no fevers, high fevers with no chills, and everything in between. The doctors kept adding antibiotics, until finally on Saturday morning they added mirapenem, again. Saturday afternoon was still a little strange, but by Sunday, we started seeing marked improvement. In fact, he started looking better and acting better than he had since the surgery! The culture from the spinal tap they took on Wednesday night never did grow anything, leading them to believe that the infection may be very localized to JUST the ventricle with the "debris."

The entire team (oncology, infectious disease, neurology) met on Monday morning and agreed that while no one was quite sure what was happening, it was obvious that what they were doing was making a difference.

They held Riley in the Special Pediatric Unit for another few days.  Riley was doing so well that, by Tuesday,  they went ahead and had his first radiation treatment. Once again, Riley was sent home "for good."

After another week at home with us administering antibiotics, Riley continue to do better and better.  We took Riley in for an MRI to see if the "debris" was still there, or there were any other explanations for his sudden recovery. Based on that MRI, that "debris" was completely gone, and after 72 hours off the drug with out any fevers or other ill-effects, Riley is now infection free.

One of the greatest things about this latest antbiotic is that Riley's unique personality has come out full force -- all his spunk and fire was just waiting to burst back out. We've been so relieved to find out that the apathy and lack of interest in anything he was showing after the last surgery was infection-induced, not a permanent side-effect of the surgery!

Riley's got radiation for roughly 3.5 more weeks, then they’ll wait for a month to give it time to do it’s job. It’s a cumulative treatment, so he gets the same dose every weekday for 7 weeks, and then they wait. After a month off, they’ll go in and see how the tumor is doing. If it’s survived, then Riley will go through a massive dose of chemo for 7 days every month for the next 10 months. That’s the one we really worry about because we know it’ll make him sick and cause a host of other immediate health issues (weight loss, depression, nausea, etc.).

Riley's father has had to leave his job to povide care for Riley since he now requires 24/7 care. Riley has some movement in his right foot and leg, but is not able to put any weight on it or use it to move himself. He's not had movement (other than a small twitch) in his right hand or arm, and he is still struggling with his speech. We are hopeful that with focused therapy, Riley will eventually regain use of his right leg, but it's going to be a long road. We pray daily that Riley will have a very long road, and that this will end up being a very short stretch.

Significant prayers have been said, and many tears have been shed (and will continue), but we have faith and believe everything will eventually work out.

We have been blessed to have tremendous support and love from our church community, Riley's high school community (he was only freshman for two weeks before going into the hospital!!), our neighborhood community, the community at the hospital . We have been so touched by the compassion and understanding of everyone involved, that we can't begin to say thank you enough.

Although I have really good insurance, losing my husband's income has definitely impacted our bottom line. We have cut our expenses as much as we can, but it's close -- and we want to do our best to stock up on as many happy memories as we cam -- whether it's family movie night, or a day with  friends.


Thank you, and God Bless.