What's Going on With Scott

Against my will, I feel like I need to post about what has been going on with Scott since this is our family journal (warning: very long post)

On October 8th Scott was diagnosed with a brain tumor. 

Background

He has been getting dizzy when he runs for a little over a year now. I talked to his pediatrician about it in March of 2013 and he thought it merited a visit to the ENT doctor. They deal with the inner ear, balance and dizziness issues. At this same time we found out that Scott had really bad vision and he got his glasses. So when we went to the ENT, he just really felt like it was Scott getting adjusted to wearing glasses and that was that and sent us home. So it seemed like Scott's symptoms got a little better, but at the same time it got colder/winter came and so he wasn't running around as much. So then when he started up soccer again this fall it was apparent to both Kevin and I that his symptoms have not gotten any better. He had always tilted his head when he ran, and now he seemed to be squinting like it was hurting him. I called the ENT the next morning at 8 am and requested an MRI. Of course we had to go to an appointment and jump through some hoops, and then finally his MRI was scheduled.

October 8th

MRI was scheduled for 8 am. During his MRI I sat in a chair next to the tech and was able to watch the images as they showed up. Even though I was unsure what the images were suppose to look like, I knew that what I was seeing was not normal. I had the distinct impression that they were going to find something in the MRI and I was to think of it as a blessing to finally have answers. We finished up and I dropped Scott off at school and ran to the grocery store. It had only been an hour before the nurse called to tell me that the ENT doctor wanted to meet with us as soon as he got out of surgery around lunchtime. I got off the phone and just started bawling. I knew it was a tumor. I kept telling myself not to think the worse, but I just knew that's what it was. So Kevin and I met with the ENT and they basically just said, "So he has a tumor" and showed us his MRI. We were referred to a neurosurgeon at Primary Children's Hospital and were set to meet with him on Monday and have a biopsy scheduled for Tuesday. After we put the little kids to bed, Kevin and I sat Scott down and told him he had a tumor and what our plans were for the next week. He wasn't all that surprised. He told us the night before that they were going to find something on the MRI. He knew. He was really just concerned about "how" they were going to test the tumor, but we just told him he would be asleep and then we went on to have a really normal and fun weekend as a family just to get our minds away from what was our new reality.

October 13th

Scott, Kevin and myself went to Primary Childrens Hospital to meet the neurosurgeon. The surgeon expressed to us that this is NOT an operable tumor. It is located right in the middle of his brain stem and right where the right and left sides cross over and also integrate with hearing, swallowing and everything else. Sometimes tumors are in parts of the brain that you can actually remove and be normal, but this is not that case. Where it is located is "prime realestate" as he referred to it. He said if you took a pencil tip area out, you may be paralyzed- it's that critical of an area. There is about an inch piece of the tumor that is bulged/herniated away from the brain and the neurosurgeon felt confident they could take that piece out for biopsy. He said he wouldn't touch anything else even if he had a gun to his head. Pretty dangerous stuff. So biopsy was scheduled for Tuesday. Even though the surgeon was leaning towards the tumor being benign, they still have to do a biopsy so they know for sure, and also to know which treatments they can use. This type of tumor is very very rare. Our neurosurgeon does about 250 surgeries at Primarys every year. At Primarys they see about 30-40 tumors a year that are located in the brain stem. He said they see this tumor that Scott has only once every 5-6 years....so it's very rare.

They explained all that was going to happen during surgery and how they would remove a piece of his skull to get to the tumor, and all of the details. They also told us there was about a 20% chance that something would be affected from surgery, but they couldn't tell us if it would be on his right or his left side just because the tumor is right smack in the middle. Scott was with us. It was a rough day. We were all very emotional and Kevin and I were wondering if it was the best idea to have Scott with us to hear all of the details. He is such a mature boy, and we had been so honest with him through all of this we just really felt like we needed to give him ALL of the details. His grandma, grandpa and aunts and uncles on the Blaser side got him an Ipad and wrapped it up. We got back to the car and we knew he needed something to boost his mood so we let him open it up. He was beyond excited! Just couldn't believe it and was sooooo happy! We went and walked around temple square and he took some pictures with his new ipad, including this picture which is his first "selfie"

We wandered around for a little bit, grabbed some dinner and then went and checked into the hotel. Scott was busy staying distracted on his new ipad. Every time he closed it or put it away, he would start crying. We let him lay in bed and listen to music. None of us slept that night, but I think it was the worse for Scott. He cuddled on me and I tickled his back, but he just woke up continually through the night telling me he was so scared. It was a hard night.

October 14th

Surgery was scheduled for 7:30 am and we had to check in at 5:45. Grandpa and Grandma B came with us to the hospital, and Grandpa and Kevin were able to give Scott a blessing just before surgery. Scott was brave as usual and I know the blessing helped to comfort his worries. All the nurses were so sweet and the child life specialist nurse talked to him and showed him pictures of the operating room and let him smell different smells they have for the sleep mask. Scott decided on pineapple. He was in the stretcher and Kevin and I walked him down the hall, told him we love him and to be strong, and then as soon as he turned the corner we both pretty much fell apart. We checked into the OR waiting room along with Grandpa and Grandma B and also Grammy R. Surgery was scheduled for 6 hours and they would phone call the front desk every hour or two with an update from the operating room. 

They kept Scott awake but heavily heavily sedated, but they had to have him awake to monitor all of his nervous system. The way they explained it to us was like acupuncture needles all over his body, head and even his tongue where they are able to monitor every nerve and make sure they didn't damage anything during the biopsy. It was a long wait for the first update. The nurse told us that he was super brave and that he fell asleep listening to "We Will Rock You" on the nurses Ipad. 

It was a really long and emotional day for all of us. We pretty much held our breaths for the entire day, cried a lot, prayed a lot, and tried to get through it. We got updates every 2 hours, but they seemed so far away. 6 hours came and went and then they called to tell us they were closing him up and should be down to get us in 45 minutes. An hour and a half later the neurosurgeon finally came down to get us. It had taken 7 1/2 hours. He was really honest with us about the biopsy. He said everything started out as planned, he made an incision down the base of his head, cut about a 1 1/2 inch square piece of bone out to get to the tumor (which was later put back together with titanium plates) They took a few samples, but he said that every time he tried to get a piece Scott's heart rate dropped really low and so that's why it took so long because they had to take time between each step to stabilize him. He also told us that once he got deep in there, everything got really confusing and where you usually have a very beautiful bright pink brain and then like a green tumor, he just couldn't tell on Scott what was good tissue and what was bad. It was all integrated together. He was battling himself trying to decide to go further or to stop and close him up. He was really hoping to get the entire bulged part and that's what we had discussed-getting about 30% of the tumor, but he also knew the risks if he kept going. At this point he called down another neurosurgeon to get a second opinion. He agreed that they needed to close him up. It was just too dangerous. He felt bad he couldn't get more. We were happy he didn't. I was praying so hard that he would be gentle and not aggressive- and so I was just relieved and so were the rest of us. My mom jumped up and gave him a hug! He told us that Scott was doing good. Never had a patient wake up so quickly in the OR and that we could go see him in the ICU in 15 minutes. That was frustrating! After 7 1/2 hours of waiting we just wanted to see our boy! 

Finally Kevin and I got to go see him in the PICU. He was in a lot of pain. He also didn't have any feeling in his right arm, but he was just in so much pain and crying a lot. It was hard because we told him that he wouldn't feel anything during surgery, but of course we underestimated all of the pain from after. We spent the day in the PICU just trying to keep his pain under control. This was also a critical time when he was waking up just making sure his speech and all of those things were normal. They said a lot of times with brain surgery they talk like babies and loose a lot of that language and that it just takes time. Not Scott. He was asking me what's with all of the needles in his right arm, and how come he didn't have any pants on. He even told me he was worried about the next MRI because of the plates in his head. At this point I was just glad we let him listen to all of the details. I can't imagine a kid waking up with all of this pain and stitches down his head not knowing what had happened to him. He knew. It made me smile just because I knew he was okay! We took turns letting grandparents come in to see him and Scott slept most of the day.

He stayed in the NICU over night and Kevin slept in the chair next to him and I slept in the sleep room down the hall until about 3 am and then we switched places. He spent the entire next day in the NICU just resting and being monitored. 

Pulling a smile out of him. At the NICU he also got a visit from Aunt Brooke, and he did have a few minutes of fun with Grandpa shooting rubber band airplanes at a balloon some little girls in his class sent him.

 Wednesday night he finally got to move out of the ICU into his own room.

He also went to get his post-op MRI Wednesday night and Thursday morning they showed us the results. They were just looking to make sure he didn't have any strokes or anything like that during surgery. They also checked to be sure that they "hit the target"

Here's one of the MRI pictures with his breathing and nose at the top and the back of his head at the bottom. I circled the entire tumor and you can see how it's right in the middle of the brain and also how there are two parts of it-showing like 2 white ovals smashed together. So they were hoping to take out that entire bulged part, but instead they just took a tiny piece out of the middle- where you see the black speck in  the middle of the white. But the MRI showed no strokes and that they definitely did hit the target.

Some more pictures of Scott

He was of course just really sad and depressed at the hospital. He slept a lot and watched a ton of shows on his ipad as well as played a ton of games. 

Finally able to sit up in his bed. He loved this picture of himself because he felt like he looked a lot worse and it was reassuring to him to see how normal he looked.

I think it was on Thursday that he stood up twice with assistance. He also went down to therapy and they worked with his hands a little bit. His left side was still weak. The neurosurgeon said that the cerebellum is the only part during surgery that they have no way of monitoring, so it's most likely to get damaged and it was for Scott as well. The cerebellum does all the fine tuning of all the movements you make. So in the ICU when they would tell him to touch the doctor's finger and then touch his own nose, he could do it with his left finger, but with his right he would smack his forehead. It got better each day where it eventually was to his cheek and then to the side of his nose. It just made him clumsy with his right hand and foot. But he improved every day at the hospital. On Thursday the 16th he was able to leave the room in the wheelchair and was able to go to the "Forever Young Zone." That cheered him up pretty good. As soon as he saw all the 3D mazes and origami he smiled.

On the way back to the room we showed him the Superman statue again and I asked him if he wanted to take a picture next to him. Scott said, "I can try" so he stood next to him for a picture. So cute. I love this picture. Two superheros!

On Friday the 17th they said we could go home. I wasn't sure how I felt about it, but they said he was doing so amazing and that there was no reason for him to stay. Here he is standing all by himself!! And you can see where they shaved the little spot on his head where his stitches are.

Grandma also brought Hailey, Arianna and Jay to see Scott in the hospital. The child life nurse gave them each a doll and showed them what the IVs and different equipment looked like. Both the girls took it very serious and I think it really helped them to be sympathetic for Scott and to really understand what he had been through. They were able to stay and have lunch at the Ronald McDonald room while Scott got some emotional therapy to prepare him for home and to talk through some of his feelings. Then we were all able to go home together.

 Leaving to go home and he opted not to have the wheelchair and to just walk on his own. 

Home at last. We took his bunk bed down and put it on the ground. He was still clumsy walking for a few days, but he is so much better now. He still hasn't gotten all the feeling back in his right hand. He said it just tingles always. The doctor ordered him to keep 2 feet on the ground at all times for 3 months. No bike riding, rollerblading, running, swinging, etc. 

We spent the week just resting and he was still very tired and so he took a lot of cat naps. We had both Grandmas here and so we would just try to get him out to get some fresh air each day and just try our best to cheer him up and make him smile. This was cute when he just fell asleep outside in the lawn chair soaking up the sun. Just adorable.

The doctor wanted him back at school by the end of last week. I went in on Wednesday and talked with all the kids in his 3rd grade class and just kind of filled them in on Scott, showed pictures of his stitches, and answered all of their off the wall questions. Then on the 23rd and the 24th he went to school for an hour (with me monitoring of course).

We finally got pathology results back on Friday. They confirmed what the doctors already were suspecting and that was that he had a grade 1 tumor so it's very low grade. He was scheduled to be on the brain tumor board review last week, but the results weren't in yet and so he was pushed to this week. This week the board will meet to talk about him and then we will go back down to Primarys and discuss different treatment options that they feel would be best for him. 

We are feeling very blessed that it's not cancer. Huge blessing. But we are also very anxious to find out what treatments we can do so that he can move on with his life and get better. It's been a rough two weeks, but we have been so blessed and uplifted by our family and neighbors. It's been amazing. 

We are just adjusting to our lives and trying to find out what our new "normal" is while we await our next phase.