“And the beat goes on. Drums keep pounding rhythm through my brain. LA DE DA DE DEE, LA DE DA DE DA. And the beat goes on.”
Sometimes, that is all that I feel is beating, drums in my head and that’s all that is left. But we keep going. Collin has no contact with social media right now and we have not told him, but I feel safe in posting before we tell him the full story before we tell him tonight.
As I had mentioned in a carebridge post many months ago that we would have Collin gene tested, we have actually had the results for a couple of weeks. The P16 gene test came back positive. Many of you will ask, “What does that mean?” Well, that’s a good question. You can ask the top, world renowned researchers in the world and they don’t exactly know. WE HAVE ASKED THEM. This gene is a familial gene that is passed from parent to child. Our problem is, there is NO screening in place for the children that this gene is passed. Trey was such as rare case.
I want to say LOUDLY, this DOES NOT mean Collin has cancer. It just increases his risks of pancreatic cancer. The P16 gene is a mutant melanoma gene which transmutes to the pancreas. It can also show up in the form of lymphoma.
What St. Jude has been doing for the last three to four weeks is talking to the top doctors at the top hospitals across the country to gather information on how best to screen Collin. The ideal way to screen Collin is to do it the most less invasive way with the least amount of radiation. This screening will be an ongoing procedure throughout this life. Dr. Tauer at West Clinic has been notified, of course. But we are going a different route with a gastro dr. We will be seeing Dr. Farees Farooq tomorrow just for an initial consultation. We will talk to him about the endoscopy that Collin will have done to ultrasound his pancreas. This will be done at Methodist Germantown even though Collin is now considered at St. Jude patient. After this test, Dr. Sara (who was Trey’s doctor) will do an extensive MRI to get many slices (pictures). Both of these tests will be very good baseline tests.
We have talked with Dr. Dave Tuveson of John Hopkins and he has met with Harold Varmus who is head of the National Cancer Institute. They also brought in the head of the oncology/hematology department at the National Cancer Institute. We gave Dr. Tuveson full permission to use Trey’s records as he seems fit for research. When Trey was alive, he expressed that desire as they were taking blood and we signed forms for that permission. There is just not enough research in this area. My biggest fear is that another family will experience this and there will not be any answers for them like there were not for us – only quality of life.
When Trey was diagnosed, there was really no doubt as to how he would handle the situation. With Collin, there is no idea how he will take this news. He is still dealing with the death of his brother, coming off a football season where he struggled, he is failing at school and we seem to not be getting the help we need in that area, now we have to tell him this. He heard me tell someone this morning that he had a doctors appointment tomorrow afternoon and he yelled from downstairs and said – “Not another therapist!” I laughed and said no, not another therapist. He said, “Who then?” I told him a gastro doctor to get some things checked out and dad and I would explain more after school. He didn’t skip and beat and asked me to throw up a towel.
There are so many facets to this P16 gene that our knowledge cannot wrap our heads around it. We know that Collin will not be able to do it. We do not plan on mentioning the P16 gene to him. It will only confuse him and worry him when we really don’t think he has that much to be worried over, we hope. We are going to let the doctors and researchers do that for us.
We are parents that have many questions. So if you ask us a question, it is likely that we will tell you that we have no idea and that we have asked that question ourselves. Like why don’t they do pancreatic research at St. Jude? Because it is SO rare and needs to be highly funded. Research is happening, it is just not at St. Jude. If we were at the top children’s hospital in the world, I don’t understand this. I am pushing my way through to find this out. I told Dr. Tuveson that I am very pro-active and aggressive. He said he was glad I was on his team. This won’t bring Trey back, but it might save someone else from losing their Trey.
I think it was D. J. Stephens that said to me that God would not allow us to lose both of our children. I told him I wouldn’t think so, but maybe He would jus this to strengthen Collin. If you are a student or friend of Collin’s and read this before we get to tell him, you are in trouble! You shouldn’t have your phone at school anyway! ;o)
The Works and the Word of God.
1 The heavens are telling of the glory of God;
And their expanse is declaring the work of His hands.
2 Day to day pours forth speech,
And night to night reveals knowledge.
3 There is no speech, nor are there words;
Their voice is not heard.
4 Their line has gone out through all the earth,
And their utterances to the end of the world.
In them He has placed a tent for the sun,
5 Which is as a bridegroom coming out of his chamber;
It rejoices as a strong man to run his course.
6 Its rising is from one end of the heavens,
And its circuit to the other end of them;
And there is nothing hidden from its heat.
7 The law of the Lord is perfect, restoring the soul;
The testimony of the Lord is sure, making wise the simple.
8 The precepts of the Lord are right, rejoicing the heart;
The commandment of the Lord is pure, enlightening the eyes.
9 The fear of the Lord is clean, enduring forever;
The judgments of the Lord are true; they are righteous altogether.
10 They are more desirable than gold, yes, than much fine gold;
Sweeter also than honey and the drippings of the honeycomb.
11 Moreover, by them Your servant is warned;
In keeping them there is great reward.
12 Who can discern his errors? Acquit me of hidden faults.
13 Also keep back Your servant from presumptuous sins;
Let them not rule over me;
Then I will be blameless,
And I shall be acquitted of great transgression.
14 Let the words of my mouth and the meditation of my heart
Be acceptable in Your sight,
O Lord, my rock and my Redeemer.