The Fight Goes On

The summer went by so fast! The kids and I are already back in school, doing the daily routine again -- and we're loving it. A few re-caps from the summer in regard to Quinton's fight against cancer.

• San Diego Trip! As soon as school let out, we took off for the coast again. We stayed right on the beach and had a great time. Quinton wasn't feeling very well, but he was able to rest and participate in most things. He had a fall while trying to navigate our hotel room, but we figured it was just fatigue and stiffness from the journey. We stayed at La Jolla Beach and Tennis, and it was a fabulous place! The girls did not leave the beach unless dragged off!!
• On our drive home, we noticed some bruising. We figured his blood counts must have been low due to the chemotherapy. The next morning, Quinton was unable to swallow while eating or drinking. He was coughing and had scary mucous. He was admitted to the hospital for about a five-day stay. A scan showed growth of the tumor into the brain stem as well as recurrence of the tumor down below. The brain stem part was responsible for his swallowing symptom, while the lower part was deemed responsible for his decreased leg strength. He was treated at Huntsman with radiation on a five-day dosing. Dr. Bruggers also switched his chemotherapy drug to CCNU, an older medication that is given orally. Q has been in a wheelchair full time ever since.
• Q was on obscene amounts of steroids throughout the summer. He ate and ate and ate! His favorite part was going out to breakfast with me at IHOP! These drugs were amazing in taking away nausea, pain, and the swallowing problems. However, he did gain a lot of weight, especially in his cheeks and ankles!
• Dan Reynolds, lead singer for Imagine Dragons, came for a visit with our stake president, Jan Newman. He was so kind and gracious. It seemed like he was just an old family friend who had popped in for a visit. It was fun for Q to tell people about the visit from this amazing musician. President Newman had been his mission president, and he was kind enough to suggest a visit! 
• Since school has started, Q has been tapering off from the comfort of steroids. He has been doing amazingly well. Each week, we cut the dose in half, and while he struggles at first, he has bounced back each time, so we are really encouraged by that.
  
  
  
  
  
  
  

Almost to the end of the year!

Wow, now that there are four school days left, I think I can make it. Whew...When Q was hospitalized in March, I thought I might need to take an extended leave from work; then, I thought I'd be able to hang in there till the end of the year. Little did I know that it was going to be a long haul, but now we're about there. I still have a mountain and a half of papers and grading, but I will get there.

Q has had a lot of ups and downs in those two + months. It's kind of cliche, but he has good days and bad days. He had a scan May 14th that was quite inconclusive. It showed more "signal" in the spinal cord, toward the neck/brain stem, but that could mean swelling from the radiation or ...tumor growth. Bruggers put him back on for additional rounds of his experimental chemo (Temodar). It works by stopping cell division in that last stage of mitosis. There's quite a bit of data to support that this drug is effective. Q will be on the drug (he takes it orally) for one week, and then off for three weeks for quite a while.

Two of the huge 'ups' he's had in these two months were his Eagle court of honor and the huge fundraisers done at our schools. April 26th was his Eagle Court of honor. What a wonderful night that was. Many of my family members were able to attend from out of town to make the evening really special. We are grateful to all those who attended and helped out. Robin Perkins deserves a shout-out. She decorated cupcakes, played the piano last minute, and got Q this cool embroidered custom Eagle scarfy thingy:)(I can't come up with the scouting term for this at the moment:) Skyler Halford, from BYU basketball came and gave an awesome talk. We are so grateful to him for coming and supporting us! 
 http://www.heraldextra.com/news/local/south/salem/article_99c0bdd1-c80f-59d7-9159-a67bf527cb01.html
Secondly, we had a great experience with the fundraisers that our local schools put on for him. It's kind of difficult to be the ones receiving help, but we sucked it up, and we're so glad we did! I thought, "Oh, if each school earned 1,500, that would be great." But no, each school went way and above that, but what's more astounding was the tremendous show of support that the faculty and student council members of both schools displayed. What a blessing to our family! I thank them from the bottom of my heart. Even though Q doesn't display a lot of emotion openly, I know he was moved and felt supported and loved.

http://www.heraldextra.com/news/local/education/precollegiate/teachers-complete-dares-to-raise-money-for-student-with-cancer/article_3d487896-194e-5976-ac72-f325b90bc919.html#.U2pmmLxONLw.facebook

The money has already started to come in handy for paying for this really awesome nausea medicine that our insurance leaves a huge co-pay for. His nausea has been impacting him consistently, so this drug will be great for him, and it's a good use for the money. Here's to no more throw-up buckets in every room!!

We are so grateful for everyone's prayers and love and contributions. Cancer's a terrible disease that makes us better people. We feel so much peace right now; it doesn't make sense, but we do feel like we are being watched over in these times.

Update

Hello, I do apologize for the lack of posts. It's been a difficult month. Here's a few re-caps of some of Quinton's health issues.

March 13th -- Q came home from school and made it to my bed but was unable to move his legs much after that. We called the doctors who asked us to call the paramedics. I had quite the team of Payson paramedics on my bed! And my room was not clean, and my bed was not made -- awkward:) I can only laugh about this now after some weeks have passed. After the ambulance ride to Payson hospital where David B. and Brian W. administered to him, he was taken by ambulance to Primary's where an MRI was done. The MRI showed that the reason for his paralysis was tumor growth.

March 14th-- Quinton's Oncologist, Dr. Bruggers, visited and said that the chemotherapy was not working. She was researching some other chemo options, but then she decided that the radiation team had some good success, and that we should go that route.

March 15th -- Quinton had a work-up for radiation and his first radiation treatment. They are radiating the area of new growth, which is up higher towards his neck.

March 17th- March 26th -- Q stayed on the rehab floor at Primary Children's, where he had some physical therapy. He was able to learn to walk with a walker.

March 26th -- He came home!!

Present: He has three more radiation treatments and his paralysis has been pretty stable. He gets around with his walker and uses a wheelchair so he doesn't get too tired walking with his walker for longer distances. He has been to school a little bit, and his friends have been more than willing to push his wheelchair from class to class. Speaking of class, we feel that Quinton's inner strength and fortitude during these challenges is certainly classy, and we are constantly amazed at his example to all of us.

April 26th -- Q will have his Eagle Court of Honor. He has worked so hard: completed the camping around the year badge, a 50 miler, and very close to 50 merit badges. What a kid! 6 p.m. at our church. Feel free to come!

Some of the ladies at SHHS where I work have been putting together a fundraiser for Q. The gist is that the SJHS and SHHS will be competing to see who can raise the most money; the winning school will get a free dance. There will also be a huge yard sale/silent auction on May 17th in the parking lot of SHHS. It's hard for Jeff and I to accept this kind of help, since we have been so blessed in so many ways, but the bills will be big... and Obamacare...well enough said.

Mixed News
Hi! Last week, the 12th, Quinton was supposed to go in for his 'bad' treatment. We were getting all geared up for it, but on Tuesday, he went to the lab to get some blood work done. His blood counts were too low for any treatments. The doctor told us they would put it off a week and hope the blood counts came back up with a week off. We were pretty surprised because Q had seemed pretty perky up to that point. His counts must have been on the down-hill side because as he stayed home from school the rest of the week to avoid crowds and the risk of infection, he was pretty tired. Grandma Mansfield came to stay with us to help out, and she enjoyed the time in the day with Q. This week was the first time I ever had to e-mail teachers and ask them to send assignments to the office for my kid because he will most likely miss a big chunk of next week, too. It felt kinda weird, I gotta say. The good news was that he didn't have to get a bad chemotherapy treatment. On the down-side, he is at risk with low blood counts.

We had a pretty nice weekend. Kira played an awesome basketball game. She owned some rebounds and scored some points:) Kira and Jacey enjoyed the warm weather on their scooters. Quinton completed a pretty detailed Lego project: the US Space Shuttle.

We are so grateful for all the prayers you've sent our way. It's been incredible, and I can just feel the strength and power that comes from that! We are continuing on the process to recovery and hope the best for our sweet boy. Thank you!

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:)