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.