Make-A-Wish Monday the Gorge

This whole week has been leading up to the main fundraiser this Monday, November 7th from 5-7 p.m. called "The Gorge". Meaning you "gorge" yourself with food. It costs $5 per person or $20 per family, and the SBOs will give you a meal ticket with a list of all the food available. Each club at the school puts out a table of samples that represent their club or that they just want to serve. You walk up and down the halls and get one little sample from each table. We have taken our family to this event the last couple of years, and it's crazy good. They also have performances in the auditorium going on. We have really enjoyed this event in the past.

I was inspired last year as I watched the Wolfgram family who sponsored their own table of Polynesian food. I told Siale then that I wanted to do a food table this year. I just could have never imagined that it would be for us. What a turn life takes us on:)

Make-A-Wish Friday

Friday was super-hero day. Kira dressed up as wonder woman:) They didn't have an activity because the volleyball team was playing at the state competition. They took an activity bus to the games, and I went for the second game that day. Siale is a middle blocker/hitter on the team. The students were great, and the team won both games that day. I was so happy for them. They will be playing in the semi-final match today at 12:30.

Make-A-Wish Thursday

Thursday, students at Barnett and the high school dressed up in green, Q's favorite color. The activity for this day was the "ManHawk" at 7 p.m. in the auditorium. Six or seven teams of boys performed dance routines under the direction of their coaches (whichever girls wanted to coach them). Almost all the boys from our ward danced on one team or another. A big thanks and congratulations to Weston Rowley, Darren Brackner, Michael Redhouse, and Kyle Tarter. Their dances were hilarious. Some groups had glow sticks, one group had Q-U-I-N-T-O-N written on their under shirts, one group made a Q out of pom-poms, and one group had a heart and Q on their boxers.....My cheeks hurt from smiling so much.

They pretty much packed the house. It was the biggest ManHawk event ever. Over a thousand people were there. They sold out of T-Shirts. They sold out of dog tags. They had a line running out the building and around the corner. We were so touched.

At the end of the competition, they asked the teams to go up on stage; they announced that they had a special guest to present the awards. The teams all started chanting, Q, Q, Q, Q. Quinton came out on stage, and the place erupted. He announced the winners (he did a great job) and the winning team had their pictures taken pointing to Q. Here again, I can't even describe how great it was. What a gift they have given our family. It's like the "wish" is just second prize to all this love and support and confidence boosting the students are doing. The wonderful thing about this event is that it is all driven by the students. The advisor is doing a wonderful job, but she is only backing this service-oriented project that the students are all excited about. I can't say enough wonderful things about the students at SHHS!

Make-A-Wish Wednesday

Wednesday of Make-A-Wish week included "winter day" because Q's favorite season is winter and his favorite animal is a penguin. Kids at the high school and Barnett both dressed in their winter gear. The activity for that day included a lego building competition at lunch at the high school. Quinton and Jeff went over to that. The students were really great, and the winning lego design was a castle. We have pictures on some device, but I don't know where they are!!

Salem Hills High School Make-a-Wish

We are so excited! This week has been the best ever. I can't describe it. Not even a little bit, but I will try. Every year SHHS student body officers put on a "make-a-wish" week. Our neighbor, Siale Vaitohi, happens to be a student body officer. Whoever they were going to use as their "make-a-wish" kid for this year decided not to participate. Siale suggested to her advisor that she read this very blog. Then, the student council read my blog. They all wanted Quinton to be the "make-a-wish" kid.

I referred Q to the Make-A-Wish Foundation. I didn't really think he'd qualify, but he did! The student council invited Quinton up to their school, so they could find out some important facts about him. He came home from that meeting and said, "they're going to make a movie about me!" He was still chill about it, like he is everything else, but he said it with enough bravado to make Jeff and me laugh a little.

Tuesday, November 1st they introduced Quinton to the school in an assembly, which all the students dressed up for. It was the most amazing assembly I've ever been to. They showed his "movie", which portrayed pictures of him, him showing off all his lego ships, his super-hero infused room, him doing some of the exercises he does, him playing guitar, him showing off his scar, and Jeff and I telling parts of his story. They had one girl speak (I can't remember her name!!) who was so awesome who had a wish granted when she was little. Then, they introduced our family to come on stage. YES I was crying because the whole place was standing and cheering. I spoke and told more in depth about Quinton's story. The students were so respectful.

They also had Eric Merkley tell his story, which was really touching. He was a basketball player who thought he had torn a calf muscle. It turned out he had a leg tumor that was going to require amputation. It was when Uintah, the team my brother coaches, came to play Salem that they honored him last year (I just happened to be there -- maybe not a coincidence). He called Q up on stage and had a gift bag that contained a SHHS hat. He told Q that they were inducting him into the "SkyHawk Nest" and gave him the hat. We were sitting on the front row, trying to get Q's attention to tell him to put the hat on because he was just kind of holding it. Finally, he saw us and kind of shook the hat open and put it on his head, and let me tell you, that place erupted into cheers. It was the neatest thing ever!

The SBO President, Becca Newman, called Q on stage. She had a surprise for him. She had contacted Brad Paisley's agent and had gotten a picture and an album cover signed and some guitar pics. What a great girl! That was fantastic.

The student body officers ended the assembly by singing that song from Shrek, "Halelujah, halelujah." Yes, I cried through the whole thing. It was beautiful.

We also did a similar assembly at Barnett in the afternoon. I was scared about changing my talk to fit elementary students, but it was easier than I thought. It went really well too. The kids at Barnett were really receptive and ready to participate in "make a wish" week too.

Q's T-shirts and dog tags went on sale this day also. The T-shirts, inspired by Siale, depict a green Q turned into the green lantern sign, since green is his favorite color.

That night, they showed Thor, Q's favorite movie, at an event at the school. Quinton and Jeff went, and Jeff was so touched that complete strangers were walking around in Q's shirt and dog tags. We just couldn't believe what this meant for us.

Off the Hook

Whew! It's been a long day waiting for news on Quinton's treatment plan. The tumor meeting was early this morning, but communication woes abounded, and we didn't get any info till about 5 p.m. I'm pretty tired!!

Apparently, all the doctors on the tumor board felt like it was best to wait and re-scan in 3 months. I guess we're off the hook -- at least until Christmas time or so! Some doctors expressed the feeling that the growth was so minimal that it could almost be read as a mistake. I'm pretty surprised. Dr. Riva-Cambrin was pretty sure that the plan would include treatment, but maybe he was jumping the gun a little. Maybe just knowing Q personally he was a little smoke-screened by how cute he is! Ha ha!!

We're pretty happy and relieved for the moment. Normal life will proceed for another length of time! We again express gratitude for all the kindnesses and support sent our way!

The next step in the road to recovery

Hi!

Thank you for all your love and support! You've all been so concerned and supportive. We have some new news in Quinton's recovery. On Tuesday, he had an MRI -- his regular 3-month check. Jeff took him to this appointment, so I didn't have to take a day off work. I had been feeling pretty positive about Quinton's case, and I had blocked out the thought of the two little pieces of tumor that had to be left in.

On Wednesday, we met with Dr. Riva-Cambrin to review the results of the films. We got into the office right away, but we waited quite a while before some interns came in. They did some routine strength tests and asked a few questions. They said Dr. Riva-Cambrin would come into see us soon, but he was reviewing the films with a radiologist. Jeff said he knew then that something wasn't good.

The doctor came in and showed us the films. He said that the two little bits of tumor, the pieces he had to leave in the spinal chord because of the fear of paralyzation, had grown. It was a small growth, only a couple of millimeters, but some growth had occurred. He said that usually with tumors he often recommends doing another scan in a month or so, but in Quinton's case he felt it would be best to attack while the bits are small. He said that radiation or chemotherapy would be necessary.

Dr. Riva-Cambrin is going to a meeting on Tuesday morning where doctors from other fields meet to discuss tumors. He will get some input from that team on the best course for Quinton's case and call us on Tuesday. He said he was leaning towards a gentle chemo (how gentle is gentle??). Radiation could possibly weaken the bones in his spine and make his curve worse.

I was pretty shocked; however, it makes sense. We knew there were little bits left in there, but by comparison to the whole tumor, they were tiny.

Anyway, I will post again on Tuesday, but it looks like our road to recovery is lengthened a bit! It's like thinking you're almost to grandma's house when you're actually another hour or two away! Ha ha!

Update

Hello! I've had a few requests to provide a quick update on Quinton and the family and how we are doing.

Quinton is back in school, and he's doing great. He is walking really well, they've kicked him out of Physical Therapy, and he's even mowing the lawn (he charges quite a bit for this service though:0) He makes it through the day without getting too tired, and he gets along really well. He does enjoy coming home and mostly taking it easy, which is good for him.

His spine curvature has been changing since the surgery. Where before the operation, his spine was curved to the right, now there is more curving to the front. This type of curve is called kyphosis, and isn't as treatable with a brace. He may or may not need further treatment for this spine curve in the future. He also has had trouble gaining weight (Ha! I wish that was my problem!). He left the hospital at 65 pounds, and he weighs 64 pounds today. Tiny little guy!

In other Quinton news, we're starting his science project on which exterior coating provides the most insulation! Ha! I wonder if it will be stucco?

I'm also back in double-duty school, teaching at Juab and taking master's classes at UVU (I graduate in April!!) This school year is going well, and I'm really liking it!

Jacey began pre-school this year, and she loves it. She has to give me a hassle about getting ready because she never wants to go, but she likes it when she gets there. That's just Jacey for us!

Kira got baptized over Labor Day Weekend, and it was a great day. She looked DARLING and was just a sweet girl. She is loving her class at school, and she is doing great. For a while, Quinton's illness seemed to impact her the most. She went through a funk where she cried a lot and had some emotional issues, but she is doing much better now.

Jeff is traveling quite a bit this fall for work, so we miss him when he goes off all over the West! We have been so blessed and recognize the hand of the Lord in our lives. We know that Quinton's story is miraculous, and we want to recognize the blessings he has been given. We don't know all the reasons the Lord had for this trial in our lives, but we know we have been blessed!

Grateful for Miracles

This post is slow in coming, but it's really good and worth the wait. The story begins on Wednesday. Quinton was flying through therapy and making tremendous progress in walking and moving. We were looking forward to him coming home Friday. They had moved the lung biopsy from Thursday to Wednesday. Q had gone to therapy and then his nurse took him down to his CT scan which was scheduled to mark the lung tumors prior to the biopsy. We were surprised to find that he had to be sedated for the marking and CT scan, so they gave him some medicine through his IV, and he drifted off. I went to the waiting room for an approximately 45 minute wait while they marked the lung.

After 10 minutes, they came back and wanted us to go back with them. I knew it wasn't bad because the guy they sent was kind of smiling and had kind of a spring in his step. In this last month, I've become expert in reading the body language of medical personnel. I was in shock for a full 5 minutes when they told us that the lungs were clear. There weren't any more tumors or nodules on them any more. I kept thinking they just weren't looking in the right place or something, but they showed us on the screen the "ghost" of the nodule that had been there. Jeff and I just looked at each other in disbelief and sheer joy.

Quinton was slowly coming out of his sedation. He woke up, and we said, "Hey, guess what. You don't have to have the biopsy. Your lungs are clear." He smiled and nodded and drifted off again. I cried tears of joy. The nurses and doctors were saying, "This is the best thing we've had happen all year," and "This never happens." They were so happy for us. Then, Quinton woke up again and said, "Was I dreaming? I still have to do the operation right?" I said, "No, you weren't dreaming! It's true. No biopsy. No chemo. No radiation. You just get to come home." He smiled again and drifted off. We went through that drill a few more times, took him to his room, and made the plans to come home early. It was awesome that he was coming out of his sedation, so I got to tell him 3 or 4 times the good news:)

We know it was the Lord's will for this time. We are grateful; however, we recognize that others who have had just as much faith and prayer and fasting haven't turned out this way. We know it isn't because of anything we do or are, it is just what the Lord's will is for us. The Lord loves each of us and has a unique plan for everyone. One of the reasons for this outcome is for me to testify that prayers are answered and priesthood and faith have real power. The next day Q's surgeon came to the room and said, "Do you have a direct line to the Guy Upstairs or something?" We said yes...yes he does. And it was through all the people who have prayed and fasted for him that it was possible, so thank you all so much!

Updates

Hi,

Here are a few updates on Quinton's progress. The final pathology for the spinal tumor is as follows: Pilomyxoid Astrocytoma -- a fast growing but fairly benign tumor. On a scale of 1-4, it's a 2. The spinal tumor was completely taken out, so the treatment for it would be to re-scan in 3 months -- probably no chemo or radiation. The doctors are really happy with this. Quinton is the 7th person in the world to have this type of tumor originating from his spine. Lots of people have had these in their brains and a few lesions leaking to the spine, but it's very rare to have the "mother tumor" be in the spine.

The baffling thing is what is in his lungs. The plan is to do the biopsy a week from Thursday, so exactly 2 weeks after the first surgery. All the doctors will be really anxious to find out what it is. We can't determine a treatment until we have a biopsy back.

In the meantime, we have to work with Quinton on learning to walk again. The therapist, in his initial assessment, thinks it will take a couple weeks as an inpatient here to be able to walk and perform daily tasks independently. He is eating from his elaborate "room service menu" which he can order from anytime (Q's friend Rhys was really jealous of this feature). He is doing much better now that he's off his IV medication. He joked around like our real Q today, so we were really pleased to see that.

While we may not be able to take him home for a couple weeks yet, we are really grateful for how well he is doing. Thank you a million times over for all the gifts and well wishes and prayers. We have a deep appreciation for all the support and love which have been poured out. We know your prayers on his behalf have strengthened him and comforted us in this difficult time. We know the Savior's atonement included this emotional and physical pain and acknowledge his gift in our behalf.

Successful surgery!

Do we still have a long road ahead? Yes. But, we took a big chunk out of the load yesterday; in fact, they took a big chunk of tumor out of Quinton's spinal cord. Dr. Riva-Cambrin is a gifted surgeon.

Was it a long day? Yes. But, when it was over it didn't seem so bad. Kind of like how we forget how horrible pregnancy is when it's over. We arrived at the hospital at 6 a.m. and the surgery got over about 5 p.m. We got a phone update every hour and a half, and every time, the word was that he was doing really well.

Were we relieved? Yes. But, we do have a ways to go yet. We felt a lot of relief when Dr. Riva-Cambrin walked into the waiting room. We felt even more relief when he seemed pleased. He was excited that the tumor appeared slightly less cancerous than he thought. He also explained that we can't start jumping up and down for another few days when the full pathology comes back.
Did he get it all? We think so, and Q retained function. Dr. R-C explained that at the very end, one low part of the tumor removal reduced function to 50%, but he was confident that since it never went to Zero, everything should be fine, which it appears to be. Q will have another MRI today to double check everything.
Are we grateful for all the love and support that has been poured out to us? You bet. But, we are humbled by it. It's been said we don't even know all the people who are praying for Q because his story just spreads, and that's pretty awesome. Thank you to those of you who fasted and prayed even when it was difficult for you:)
Is Q doing well now? Yes. But, he is in pain and a little overwhelmed.
Is Q a hero? Yes. He's a champion:) I'm a proud Momma.

Amazing!

We've had an amazing time and have felt so much support. I've been remembering something I heard in conference and just barely found it and was amazed at the similarity of the situation and wanted to share:

Kent F. Richards, in the April 2011 General Conference

Thirteen-year-old Sherrie underwent a 14-hour operation for a tumor on her spinal cord. As she regained consciousness in the intensive care unit, she said: “Daddy, Aunt Cheryl is here, … and … Grandpa Norman … and Grandma Brown … are here. And Daddy, who is that standing beside you? … He looks like you, only taller. … He says he’s your brother, Jimmy.” Her uncle Jimmy had died at age 13 of cystic fibrosis.

“For nearly an hour, Sherrie … described her visitors, all deceased family members. Exhausted, she then fell asleep.”

Later she told her father, “Daddy, all of the children here in the intensive care unit have angels helping them.” ²⁰

To all of us the Savior said:

“Behold, ye are little children and ye cannot bear all things now; ye must grow in grace and in the knowledge of the truth.

“Fear not, little children, for you are mine. …

“Wherefore, I am in your midst, and I am the good shepherd.” ²¹

A big thanks to everyone

Thank you to all those who have helped and participated with Quinton's bucket list. It's been a lot of good memory-making. We started off with bowling, and a big thanks to Tori who rounded up some of Q's friends from school and reserved lanes. Thanks to the Bracks and the Hoovas for coming. Next came Tucanos, and the Vaitohis, my parents, Lisa, Annie, & DJ. The dinner was superb, and I left feeling more than uncomfortably full:) Then, today was 7 Peaks. Thanks to Tori who snagged us a reservation for a cabana, which was a life-saver. My brother Kent and sister Michelle came with their families and the Petersons and Hoovers came to help us enjoy it!
The weather was to die for, and we got a few sunburns but had a really great day.

Thank Heavens!

Thank heavens...the brain scan came out clean.
Thank heavens...Q has such a great support system of loving wonderful people ready and willing to give service and thoughtful gifts.
Thank heavens...two oncologists are ready to do whatever it takes to treat this rare and scary disease.
Thank heavens...a whole team of skilled doctors, nurses, and surgeons are fighting this battle with us.
Thank heavens...Q doesn't realize all of what's ahead of him.
Thank heavens...Q is such a strong and loving spirit who was sent to humble parents.
Nothing else changed too much yesterday. The surgery is still on, and the plan is still to treat the spinal tumor first. Love ya!

Quinton's Bucket List

Q and Kira in the buggy at Thanksgiving Point last Friday.

Today we have an MRI of Q's brain. Dr. Riva-Cambrin wanted to make sure he wasn't missing something. Then at 2, we meet with an Oncologist, Dr. Bergers, and Dr. Riva-Cambrin together. It looks like radiation after the spinal surgery is a pretty good bet.

We've had an outpouring of love and kind offers from people who want to help and do something. We prodded Q to come up with a list of things he'd like to do before his surgery, and maybe people can help us with ideas on how to make these cool or easy. And maybe friends or family can plan to come on some of these outings.

• Bowling -- Thursday afternoon
  


• Eating at Tucanos -- Thursday evening



• 7 Peaks Waterpark -- Friday ( I had to laugh because going down a slide on his back doesn't sound too great, but they have a lot of innertube rides)
  


• Hiking -- Saturday (Maybe Bridal Veil Falls)



• Biking -- Saturday (Maybe we could just keep going out the canyon and ride out in Midway or something?)



• Golfing -- Monday



• Shooting -- Monday



• Fishing -- Tuesday (Maybe at Payson Lakes?)

If you're in the mood for more...

This morning, June 6th, we woke up early and went to our appointment at Primary Children's. He had a CT scan first, which was difficult because he had to drink the barium stuff for an hour. Then, he went to the scan part which wasn't too difficult (especially compared to the MRI). Then, we went to meet with Dr. Riva-Cambrin the neurosurgeon.
He did a lot of tests to determine how well Quinton's brain was talking to his muscles. He tested reflex-type things and the feeling in his feet. He asked a lot of medical history questions including if we had been anywhere tropical or out of the country. I felt like Q was on an episode of House! Ha ha. Then he talked to us for about 45 heart-wrenching minutes about Q's condition. First, he has a tumor inside his spinal cord. They have to cut the spine and roll it back to get to the tumor. Most tumors of this type measure 2-4 vertebrae, but Q's spans 8 of the middle vertebrae in his spine. These types are usually termed malignant, but they always stay inside the spinal cord and don't spread. The surgury will be booked for 12 hours but may take less. Q's tumor appears to be kind of 'slick' or something without a lot of finger-type things on there. The tumor is making his spinal cord 3 times as large as it should be and the break down of communication between the brain and the muscles is causing the lump on one side of his back.
Second, he has 6 small tumors on his lung. This really is the part that baffles the doctors. If the spinal cord ones don't spread, then why does he have this going on in the lung?
Long story short, the plan is to treat the spinal tumor first. It has to come out no matter what; however, there is a 'tumor meeting' at the hospital tomorrow first thing where radiologists, pathologists, oncologists, and surgeons meet together to discuss tumor patients. Dr.Riva-Cambrin (who happens to be from Edmonton, Alberta!) will bring up Q in that meeting to see if anyone has any brilliant ideas. He's also putting his information out on the Doctor Web to see if anyone knows why these two are happening at once or how to treat the two of them together in an efficient manner.
The spinal surgery is set for a week from Thursday -- June 16th. Again, we feel the love and support from our friends and family and pray that all is well with you.

More Details of Quinton's Story

So, to start at the beginning...

I was out to the movie one night when Quinton had an itchy back. He asked Jeff to scratch it. Jeff pulled up his shirt and scratched but was amazed to see a huge curve in his spine and lump on one side of the back. I called and made an appointment with Dr. Miller, our pediatrician, for Monday, May 2nd. Dr. Miller confirmed that it was scoliosis and referred us to Dr. Smith at Primary Children's.

We went to that appointment on May 17th, the day after he turned 11, and an X-Ray confirmed that he had a pretty major curve in his spine -- 43 degrees. Dr. Smith said that a few things about Quinton's scenario indicated concern for him, so he wanted to do an MRI to rule out other causes of the scoliosis. The concerns were the shape of his curve, his younger than normal age, and the quickness with which the curve progressed.

We weren't super concerned about his MRI (I was even making small talk with the technician about finding tumors on kids, never thinking this would happen to Q.) He was in the tube watching Harry Potter getting scanned by that loud, clanky machine for a while when I asked the technician if I could go trade off with Jeff, who was out in the waiting room with the girls. She said that she was actually calling the radiologist down to look at a scan she had just done and that parents weren't allowed in there while the radiologist was in. I went ahead and left to sit with Jeff and the girls for his 45 minute MRI. An hour and a half later, they brought him out and said that our doctor (Dr. Smith from the scoliosis specialty who had ordered the MRI) was upstairs that day and would like to talk to us about the results.

Heart pounding and legs heavy, we went up to meet with him. He told us there was a tumor on his spine, and he tried to explain a few things, but Jeff and I were too schocked to comprehend it. That wasn't his field, so he didn't actually know (or want to divulge) too much. He set us up with a pediatric neurosurgeon at Primary Children's for Monday, June 6th.

We waited away the weekend in anxiety but with an overwhelming sense of the love and support and fasting and praying that were being done on his behalf.