Trey Erwin's Journal
Written Jul 1, 2012 8:12pm
We have new set of ABC's. If you have ever visited the halls of St. Jude, you will find pictures of the alphabet and a definition under each. I think the letter A covers the entire alphabet. It covers much of what our family has been experiencing and sharing the last week to week and a half. I will do my best to bring you up to date.
On Monday, June 18 we did go to St. Jude to get routine blood work done and meds administered before our trip to Florida. It was actually a uneventful trip and we left without much being done.
On Tuesday, June 19 Trey went to West Clinic and Dr. Hodgkiss first internalized Trey's biliary drain. The plan was to then put a stent in pancreatic duct for the pseudo cyst to drain. Dr. Hodgkiss at first told me he was not able to find the pancreatic duct to insert the stent. I was with Trey during the entire procedure. Luckily (well, I we know it was not luck), Dr. Hodgkiss used another ultrasound machine and was able to guide his wires and insert the stent. Since that time, we have not had any trouble with the cyst or any fever!
On Wednesday, Trey, Jay, Collin and Collierville Football Coach Mike O'Neill went to spend the afternoon with DeAngelo Williams. Yes, this was after the procedure the day before. He would not miss that! He came back with so many stories, laughter, and confirmed all the wonderful things we heard about DeAngelo. A wonderful, awesome guy! You ask why I didn't go? I had a root canal! But it had to be done! (Thank you Dr. Clay Midyett!)
Thursday morning we headed to Florida in an Expedition provided by Landers Ford and totally arranged by Jim Siegfried. There was no way we could have driven to Florida without the space for Trey to be comfortable. Once we arrived, it did take him the next day to slowly gain his strength back from the ride. Riding to Panama City Beach takes it out of anyone!
June 21 (Friday) through June 24 (Sunday) Jay and I served as counselors for our church high school camp while Trey attended and Collin enjoyed being with the kids. Trey would come and go during the services as he felt. This is when I noticed he was having back pain and a hard time sitting in the chairs for worship. He did get in the pool and enjoy some free time, but none of us really got a lot of beach or pool time. Thank you Tropical Storm Debby. The church decided to return to Memphis on Monday which worked well for us because we had booked our condo for Sunday to Sunday.
NOTE: We watched a video series at camp based on the book Not a Fan by Kyle Idleman. I highly recommend this read. It talks about being a Follower of Christ, NOT a Fan. So many of our church services are filled with fans. The bible says in Revelation 3:16 "So, because you are lukewarm - neither hot nor cold - I will spew you out of my mouth."
Beginning on Monday we began a week of vacation with both families. Most people can't imagine vacationing with all of their family. We also took Julianne (Shiles) and Hunter (Byer), friends of Trey. Trey was not able to get into the ocean. I think he tried, but it really took a lot of energy and wasn't worth it to him. He concentrated more on getting tan. When he was not resting in the condo watching movies with the kids, he would be by the pool or on the beach.
We took an afternoon to go to the Silver Sands Mall. We all had a good time! We saw, we shopped, we dropped! On Wednesday, Jay and I rented a boat for 79 people and took 27 of our family and church friends on a snorkeling and dolphin cruise. Trey tried to get in the water to snorkel, but it was too cold. He wanted everyone to know that just because he was not hopping around did not mean he was not having fun. A giver. It was a blast!
He ate quite a bit during the week. I watched his stomach swell during the week and kept in touch with St. Jude and West Clinic. He was not running fever and the pain meds were working. There were a couple of times that we added a med to help with the pain and he would attempt to rest. I'm not sure he truly rested or SLEPT a lot the entire trip.
Thursday night and Friday night he would kneel next to the bed because that was the only way he could get relief from the pain in his back and stomach. At times, we did tease about "his baby". Trey HAS a sense of humor. He would call us in the night for pain meds and Saturday morning around 4 a.m. he wanted more pain meds and Jay had just given him meds hours earlier. The pain was not subsiding and the MOTHER in me said this is enough, we are going to the hospital.
The staff at Gulf Coast Medical could not have been nicer. They immediately administered Trey dilaudid for his pain and phenergan. He was also taken for a CT scan. I was in contact with his St. Jude and West Clinic doctors. They were great at keeping Trey comfortable.
What the radiologist said in Panama City was (in Lisa words):
1. Numerous low density hepatic (liver) lesions presumed to be hepatic metastasis. No, we do not know if there are more liver lesions since the last scan. We will have to wait for St. Jude to read the scan.
2. Complex stent and drain system...but I see no specific evidence o occlusion or obstruction. In other words, GREAT JOB DR. TOM HODGKISS!!!!
3. Abdominal and pelvic ascites. This is excess fluid.
4. Probable omental metastasis. Here is where I mentioned that the cancer has spread. The omentum is a large fatty structure and the radiologist suspects metastasis in the anterior abdomen. I will know so much more after St. Jude reads his scan. This is a place in the body that has many small blood vessels.
5. Probable constipation. I think so!!! I talked to Dr. Hodgkiss today and he did not think this was such a bad report. I love to hear encouraging word from our doctors! He thinks Trey is dealing with a lot of constipation.
6. Possible bone met in the right hemi pelvis. They have said this before but have always come back to tell us it is not cancer, but some other kind of shadow or something.
Knowing all of this in Florida and knowing there was nothing they could do for Trey immediately to control his pain, they said it was medically necessary for us to get Trey back to St. Jude by transport. Boy, was that a back and forth couple of hours. We had so many offers for transport for the entire family. I just cannot thank you enough. Trey and I were flown by Lifeguard International (who is out of Pensacola) from Panama City to Memphis and then transported by ambulance to St. Jude. It is such a blessing that Trey does not remember any of it. Oh, how God protects the ones He loves. It got scary for me when his oxygen level dropped and they decided they had to fly at a lower altitude in order to keep his oxygen level up. His blood pressure was up and the nurse on the plane asked if it was normally this high. I told her no.
I have never been so glad to see St. Jude and to walk in and see familiar nurses. They immediately began to get Trey comfortable. Let's not forget Jay and the rest of the family that left at 6 p.m. and arrived in Memphis at 2:30 a.m Sunday morning. I was up feeding Trey his favorite McAlister's potato soup Ms. Cindy (Few) brought him.
Now, today, we have tried to keep Trey comfortable. He has pump that he can push for his pain med - dilaudid. They are giving him doses of dilaudid on top of this and he receives a base rate. They increased several parts of these levels about three times today as his pain increased.
We dealt with Trey not being able to void today. This can be from several things. After discussing catheterizing him, I think one of the nurses actually scared the pee out of him. He felt much better and pain did subside. This was around 4 p.m.
We have also had an issue with his blood pressure. At one point it was 159/105. He is being given a great amount of steroids, he is in pain, he has a large amount of fluid, all of which can contribute to high blood pressure. They were starting him on a hypertension medication this evening to bring his blood pressure down until some of the fluid can be removed.
The doctors would like to go the medicine route first to see if the fluid can drain. We agree because once you start poking and draining, it's just like the cyst, until you put a stent in, it will return. We do not know for certain that the fluid is malignant. ALL OF HIS BLOOD COUNTS ARE GOOD! It's amazing. Only his white count is up which could tell infection. They started him on albumin which draws the fluid out of the tissue. They then gave him lasix to flush the fluid out. Well, you can imagine all the fluid trying to pass and not being able to go.
From the beginning of the morning to the end of the afternoon, Trey's waist measured the same, BUT he gained a pound during the day. We can only assume this is fluid.
I talked to Dr. Sara tonight and things will be different tomorrow. We understand it's hard on the weekend at the hospital. Hopefully things will get rolling tomorrow and Trey will be on the road to feeling better. We know we have hurdles to overcome, but nothing is impossible. Remember Matthew 19:26? "Jesus looked at them and said, with man this is impossible, but with God all things are possible." And I can even say that about pain control! Claiming it in the small things as well as the big things.
Thank you all so much for your prayers over the last week! Keep them coming!
GOD IS STILL ON HIS THRONE!
Remember our ABC's - A is for Always having faith in our God, Doctors, Nurses, Family, Friends, and Ourselves!
Trying to get home
Written Jun 30, 2012 11:04amAs I have mentioned, Trey has been in some pain the last couple of days. His pain could not be controlled any longer with his pain meds so we brought him to Gulf Coast Medical Hospital this morning. They did a CT Scan due to the distention of his stomach and his cancer has spread. We are trying to get Trey home by air or ground ambulance. St. Jude already has a room for him. He does not want to leave Florida today, but we have explained to him he has no choice. We appreciate your prayers.
Update to Come
Written Jun 26, 2012 1:38pmI realize I have not updated since Trey's visits to St. Jude and West Clinic. We are in Panama City, Florida this week. I hope tonight or tomorrow night I will be able to find internet access and update everyone. Thank you for your prayers. Trey is doing well. Please pray for his appetite. Love to all of those who are praying for us! May you be doubly blessed in return!
"Therefore humble yourselves under the mighty hand of God, that He may exalt you at the proper time, casting all your anxiety on Him because He cares for you." 1 Peter 5: 6-7