Brain Tumor

About 6 years ago Tara's mom had just won her battle with breast cancer while my mom had just lost her battle with liver cancer. Both of us thought that we had experienced "hell on earth". We neither one knew what was waiting around the corner.

About 3 weeks ago we found out that Dylan has an "area of concern" on his brain. Turns out this area of concern is a brain tumor. The shock we felt when we heard that is something we wish upon no one. The pain we have felt over the last 3 weeks is pain that I can't describe. I never knew you could hurt this bad.

About March Tara noticed that Dylan had a shake (or a tremor) in his left arm when he would go to reach for something. She pointed this out to me and we talked about it and we decided that she should take him in to the doctors office. We figured $15 for a co-pay was worth the peace of mind. Tara took him into to our pediatrician. Our regular doctor wasn't there so his P.A. checked Dylan over and said everything looked fine but he would get with Dr. Twiggs about it. Dr. Twiggs called us up a day or two later and said let's do a CT Scan just to make sure everything is fine and to make sure we have covered everything. Tara and I kind of blew off the CT Scan because we figured everything was fine because Dylan showed no signs of being unhealthy. We waited a week for the results when they said that there was an area of concern. They said there was, "... an ill defined area of increased density" on the right thalamus. They wanted us to go up to Primary Children's Hospital in Salt Lake for an MRI. Tara and I cried and cried many tears when we heard that news. This isn't supposed to happen to us, we are just a normal healthy family. We kind of assumed it was a tumor but we weren't sure. We had no idea what to expect.

The next week we went up to Salt Lake. We arrived at Primary Children's for his MRI Wednesday, May 13th, at 2 o'clock. They had to put Dylan to sleep for the MRI. So they put an IV in Dylan and then they did the MRI. The MRI took about an hour. When the MRI was done we waited in the recovery room for Dylan to awake. While waiting a nurse took us back into another room to "talk" to the doctor. While walking back to the room I knew he had a tumor. While we sat the neuralsurgeon, Dr. Riva-Cambrin came in to talk to us. He said that Dylan has a tumor that is about 2 cm big on the right thalamus. He said there were signs that it could be benign but that there were also signs that it could be malignant. He said he didn't want to speculate one way or the other. He said he would take this MRI to a group of doctors that meets weekly to discuss different brain tumors. He told us that one option is to do a biopsy on the tumor. He told us that because it's on his thalamus that doing so would be 4 to 5 times riskier than if it were somewhere else on his brain. Being 4 to 5 times riskier put the percentage that we could get a stroke, hemorraghing, or bleeding at 4 to 5%. He said you got to look at it like there is a 95 to 96% chance that everything will go perfect. So we took hope in that as he called us back a few days later and told us that the board of doctors voted unaminously that we should do a biopsy.

Dr. Riva-Cambrin told us about the biopsy procedure and how they would take a 1 mm needle into the middle of his brain, where the thalamus is located, and take a little piece on the outside of the tumor and a little piece on the inside of the tumor. From this biopsy we could know for sure what exactly it is we are up against.

So this past week we went up again up to Primary Children's. Wednesday the 20th, we were there at 3 in the afternoon to do blood work. Then we were to be at the hospital at 5:45 am to do an MRI and then perform the 3 hour procedure. Dylan was so good during the whole thing. From poking him a hundred times trying to find a vein for blood to when he woke up. The kid is simply amazing. That 3 hour wait was the longest most nerve-racking 3 hours of our lives. They called up 2 hours into it and said they were now going into the brain. So actually the last hour was the worst because we knew they were now in the brain. Finally Dr. Riva-Cambrin came out and said the surgery was a success. It went exactly how they wanted it to go. They even had the lab people there to confirm that the samples they had would work for the biopsy.

Tara and I cried tears of joy that the procedure was a success. They took him up to the PICU (Pediatric Intensive Care Unit) to monitor him for a day. Dylan shared a room with a girl that had leukimia. That was hard. The ICU area was hard. It really made us appreciate how lucky and blessed we are. The next step was to perform a CT Scan to make sure there was no bleeding from the procedure. At 2 o'clock we took him down to do a CT Scan. Dr. Riva-Cambrin looked over the results from that and said everything was ok. Since the PICU was crazy that day and since Dylan was doing so well, they moved us down to the NTU (Neuroscience Trauma Unit). Dylan had his own room and the best nurses to take care of him. It was like the day he was born. Just the 3 of us in a hospital room. Dylan was a favorite with the nurses. They loved his red hair and his blue eyes. They also loved his wave bye-bye when they would leave. We stayed over night Thursday and left the hospital at about 1:45 Friday afternoon. He is back to his normal self and is loving life.

We find out the results of the biopsy later this week. I can't guarantee that we will post the results.

We felt though that we needed to thank a lot of people. Some of you have known and some of you are just finding out. But whatever your status is, we ask that you will pray for our son. I can't tell you how much strength we have felt through your prayers so far. We know without any doubts that the procedure went so well because of your prayers and your faith. The things that we can control have happened smoothly because of all your prayers, fasts, and faith.

THANK YOU! THANK YOU! THANK YOU!

So many of you have gone out of your way to make our lives easier. Your efforts haven't gone unnoticed. Tara and I have cried many tears of gratitude because we have such wonderful people in our lives. You know who you are and so do we. You have all been a direct answer to our prayers. We can't even begin to say how we really feel but we hope the words "THANK YOU" do some justice.

A lot of people have asked us where the thalamus is.


Here are some pics of Dylan at the hospital. You can see the inch and a half incision on his head of where they went in. We could tell you all the gorey horrors of the procedure but will spare you or rather us the heart ache of telling you.

giving kissses

just hanging out in the NTU....after surgery!!!!!

The two just above this are when we were still in the PICU. Dylan was just slowly waking up and coming off all the sedation. These two below are pre-surgery

Tara and I get a kick out of this last pic. When he gave blood on Wednesday before the surgery they gave him this hat. You would think he was unhappy about getting poked but he is really unhappy about wearing that hat.