Chemotherapy!

One week before Christmas. As I'm sure many of you have experienced either a death or tragic loss during this season, it's not great timing to hear bad news. I had been playing phone tag with the man who schedules MRI's since November, and not wanting to wait until January 23rd, I finally scheduled Quinton's routine MRI and doctor's appointments on two different days a week before Christmas.

The day school got out for the Christmas break, Dr. Bruggers, the oncologist who sees Quinton, called at five p.m. "I'm so sorry to tell you this right now," she said. "I have met with the tumor board, reviewed Quinton's MRI, and we are unanimous in saying his tumor is growing back. We will be starting chemotherapy in January, but for the holidays, just try to forget about it and enjoy." Tough phone call. I told Quinton that night. He took it better than I did -- understatement, uh yeah. All his other scans, the doctors had addressed in terms of the little piece of tumor they had been watching. This one showed tumor growth up and down the spinal cord.

We decided not to tell a lot of family and friends (including our daughters) at that point. Instead, we enjoyed Christmas and two days later found ourselves in sunny San Diego staying on the beach. Oh, how we loved that trip. Every time we saw our kids enjoying themselves, being themselves, smiling, bonding, or laughing, we just soaked it up because we knew we would need those good memories.

January 15th -- Quinton had surgery to place a "power port" under his skin that connects to his central blood line.
January 16th -- Q had both chemotherapy drugs (Vinchristine -- the good one; and Carboplatin -- the bad one) placed in his port. We also met with about a dozen Primary Children personnel: the social worker, the psychologist, the home-health coordinator, the pharmacist... I started to realize that this was a very involved treatment. It was also emotional for me to realize that I was asking the doctors to make my child sick! Mommy emotions are complex, and just telling yourself that you're doing the right thing isn't quite enough. I was still burdened with guilt, sadness, and anxiety (which I imagine is somewhat normal, but I felt a little wacko).
January 17th, 18th, and 19th -- don't really want to talk about it. He was SICK! Poor fellow was knocked OUT! He also still had quite a bit of pain from his port placement. It's also relevant to know that at 13 years old, Q is about 70 pounds. We haven't been able to bulk him up -- whether because of cancer or spine curvature, we don't know.  It's rather frustrating to try and 'force' someone to eat or gain weight. For some reason, it always just ends up that I eat the food I was trying to get him to eat! Blech:) Luckily, he hasn't lost any weight so far.

January 22nd -- Q went in for the Vinchristine and didn't have too many side effects. My father came out from Vernal to stay with Q in case he needed to stay home from school, but Q ended up going to school! Yeah! Grandpa was happy for that "false alarm".
January 29th -- (today) Q had a brain scan, which came back clean! YES! This type of tumor (PYLOMYXOID ASTROCYTOMA) is most often found in the brain. Very rare for it to be in the spinal cord, so he had a scan to make sure no tumor was working its way into the brain, and it wasn't. We are so relieved and thankful! He also had Vinchristine today.
Febuary 12 -- next treatment: includes both drugs.
Just a  note on battling cancer: it comes with a surge of emotions for a lot of people who love our Q. It's an overwhelming battle, but with the help and support, and prayers of loved ones, the burden becomes lighter. I am grateful for that. I noticed that while dealing with this news without wanting to put a downer on Christmas, the burden was greater, but since we have been talking with our friends and family about it, we have been strengthened. Immensely. We feel your prayers and your love. Thank you for that!

Recent Events in Q's Journey

Hi! I didn't really realize that I had a reader base until I stopped posting, but there hasn't been too much going on with Q until recently. I'm finding the need to reach out and share some more of our journey -- maybe it's more to clear my head -- but whatever the reason, here is a brief run-down of recent events:

• August (2012) Quinton's routine scan showed his spinal chord tumor had enhancement.
• October -- Q began a round of radiation at Huntsman Cancer Institute (every day for six weeks)
• The treatment didn't cause too many side effects until about six weeks later when the tumor piece swelled, causing him much pain and discomfort in his spine and down his legs.
• The initial scan six weeks after radiation showed no change (but the doctors expected this and said that the radiation would take time to work).
• April 8th (2013) -- Quinton's scan showed tumor enhancement, progression, and dilation of the spinal canal. These are subtle changes, but they indicate that the tumor may not have responded to radiation.
• May 20th -- Q's next scan, where the doctors will assess the rate of change and decide on the next step (most likely chemo).

Well, first of all, Quinton is good. He has an unfailingly positive attitude and some kind of sense that he doesn't need to worry about anything! He's got some major Hakuna Matata, which I'm really grateful for. I, on the other hand, have had to begin again making my peace with cancer. I have had a mini-mourning phase, wherein I've had to mourn the loss of radiation being successful:) I'm coming around, though, and things are going to be okay. We're extremely grateful that if chemo is the next step, it will be summer, and I will be able to devote whatever I can to his comfort, and he will not have to miss school. 

Wherever you go, tell people to pray for Q! I am so touched that when I tell people about him, they often say, "We haven't stopped praying and fasting for him." That's amazing!

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.