Wednesday, January 29, 2014


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!

1 comment:

julie said...

Thanks for writing this Lori! its nice to find out all the details without feeling like we are bugging you to much. We love you all & are all lucky to be a part of your lives!