Monday, June 6, 2011

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.

6 comments:

The Coxes said...

We are praying constantly for all of you. Know that we love you and and hoping for the best for Quinton. Hugs to you all!

Hali said...

The Nielsens love you, dearly, and we're keeping Quinton and his awesome family in our thoughts and prayers each day. If there is anything I can do, please ask. Sending lots of hugs your way. Hang in there!

Melissa said...

We will keep praying for your family and for Quinton. Hope the doctors can find some answers for you. Hang in there!

Eliason 7 said...

You are an amazing family, with such a connection with the spirit. We also understand that hardest thing to do in life it watch one of our children suffer and go through such diffuculties, especially at such a young age. Feeling hopeless is the toughest feeling to work through, and the only place we can find solace and joy from these experiences is from the Lord and our faith.
We of course will continue to pray for Q and your family, and offer any and all our help that you need.
Love you so very much, Cathy & Tracy

laura said...

Lori, thank you for the update. It is terrible news. I'm glad that Riva-Cambrian took time to explain things and that he is consulting with his collegues. Have they told you any more than the scheduled surgery? Will you meet an oncologist? a pulmunologist? oncology radiologist? Did you discuss seeing a nephrologist? Usually one of the specialists will head the team. Right now it looks like that might be the neuro-surgeon, but that may change depending on what you and they feel Q's greatest need is. It's good to assemble a team that will communicate with you and work well together. Know that you can take part in putting that team together and making sure they meet your needs. Be proactive and take charge as soon as you feel you have the information to do so. You have some really tough decisions to make. The drs will be your advisors, but you and Jeff need to make the decisions with Q. Pray and follow the spirit (and sometimes you just have to guess). I know that you will feel angels guiding you. They love and adore your beautiful son and will help you along the way. Be sensitive to their presence and promtings. You will feel so much love and I hope you will let it sustain you. Let me know if there is any way I can help. I have spent a lot of time at PCMC. Talk to the social workers there. They will be good guides and can help with financial concerns as well as everything else. Know that you are in our hearts and thoughts.

Michele and Wyatt said...

Sorry to hear about Quinton, but I am gad that you shared so that we can pray for Quinton and your family.