Inasmuch that Trey’s next scan is not until noon or so today, I figured I could put together a list of things that have happened and/or occurred to me over the past two days of tests regarding Trey’s cancer.
1. As I got the hospital on Tuesday (after dropping off the “monkeys”) Rachel handed me the fluid that he had to drink (yummm, tastes like pink lemonade…filtered through sugary sewage) and said, “you’re on, he has to finish this before his scan.”
2. I immediately got the idea to use the stopwatch app from my phone and have him take a drink on the 3’s (30 seconds) and the next “big” number (minute)…he entertained and obliged. I was quite proud of myself.
3. 8 minutes in he belched really loud and threw up a good mouthful. Oops. Hey, my job was to get him to drink it, not keep it down.
4. We went down for the scan with a third of the cup left. In the waiting room I made up a game of “Quarter Puke Bucket Toss” where he tossed a quarter toward the puke bucket on the floor. If it went in he drank once, miss and he drank twice. Drinking games for your child with cancer…another thing “What to Expect As Your Child Grows” didn’t teach you.
5. He drank it all in time.
6. Trey has loved “Frozen” for a while now. Sure enough, the great folks at Children’s Hospital Pittsburgh Radiology had it on as we got in the room. Check out the picture above. He sang as it put him through the scan.
7. Radiology said that the schedule for his scan for the next day “fell through the cracks” so we have to come in today instead of getting it done yesterday with his bone marrow biopsy.
8. I told them that, “fell through the cracks” was too easy of an excuse and not acceptable. They are good people and apologized. They have been great with and for us over the years and I respect and appreciate them greatly.
9. Their attorney had me add the last part. Just kidding, it’s true though. They do a great job.
10. I knew when the scan was over that it was not good. I read people way too well.
11. Dr. Shaw, our Oncologist, does a fine job. I knew from his demeanor that the news wasn’t good.
12. The news wasn’t good. His biggest tumor had grown “significantly” since his last scan in October.
13. We weren’t floored by this news. It does go into a bit of the surreal category, and yet, it was very real.
14. His bone marrow biopsy (think spinal tap) and MIBG scan (today) will let us know if he can still go to Philly for the MIBG therapy. If his marrow is greatly compromised (for one thing) it will preclude him from being able to get that treatment.
15. In a way, I’m ok with that if it comes to pass. It takes the decision away from us though we are committed to getting the treatment if he is able to have it.
16. Yesterday, Dr. Shaw gave us a prescription for one of the Oxy’s (I don’t remember and don’t feel like getting up to check the bottle) to help with Trey’s pain which should help him sleep.
17. I had an “aha” moment and realized that pain meds are what they give you when you are near…well.
18. That being said, he went to bed last night at 9, slept til 1, woke up, we gave him the oxy and he slept the rest of the night….praise God, and drugs?
19. We have to tell Joe and Bella to be just a bit more careful (or maybe just careful, we’ve never really told them to take it easy) with Trey. The fact that the main tumor has grown means that it is closer to the skin and surface and could be “banged” into quite easily.
20. How to do that without telling them more or causing them to wonder and worry escapes me so far.
21. Trey was moving a bit slow this morning, oxy hangover? not used to a good night’s sleep? still catching up on sleep? Does it really matter why?
*We interrupt this post for a trip to the hospital to get his third and last scan/procedure of the week.*
22. Today’s scan went well…ish. He did great with the silly juice (so would you or I) but after 45 minutes or so (it takes about an hour) he kind of freaked out. Alternating orange and blue slushies got him to calm down and relax until…
23. They needed one more scan. That…did not go well with the YoungWarrior. He just wanted to turn on his side and take a nap. Since he was strapped and velcroed in tight/flat on his back it was just not possible. For those of you with claustrophobia you may breathe now. I’m done.
24. I had left to go get the monkeys by then and Rachel ended up giving him some more Oxy. They were able to finish the scan and get out.
25. Even though Dr. Shaw is out of town he will be getting the results and lab results from the biopsy (yesterday) and scan (today). From that information and a subsequent conversation with Philly we should know by August if we can go next week.
26. While Bella was at dance last evening Joe, Trey and I went to Home Depot and Target. I gave Trey Motrin before we left. He was in a great mood the whole time. We had a blast. It was truly one of those “Mental Snapshots in Time” kind of things.
27. We ran into someone who has lost a child to cancer.
28. We also ran into a husband and wife who are near and dear to our family. I wonder what they must be thinking as they not only look at Trey but Joe and myself as well.
29. Home Depot did not have any Butterfly bushes. Ours kind of, well, died last year when there was a frost and I said, “Did you check out those nerds covering their precious plants in sheets?” Oops, sorry honey.
30. Trey was moving quite slow when he got home from his scan today. Oxy buzz, silly juice come down dump, sugar crash (from 3 slushies), still groggy, who knows? He is at Grandma’s now. What must she be thinking? It’s amazing to think of everyone (in general) but specifically those in and closest to (like you) our family and wonder how they go about processing all of their emotions regarding this.
31. OOOH!!! I almost forgot, there was a sophomore in college shadowing Dr. Shaw for the bone marrow biopsy. She, green faced, had to excuse herself in the middle of the procedure and asked where the rest room was. Ha, newbie.
32. Lastly, I watched a fight the other night (UFC) and was floored by how much a guy simply kept pursuing the other. He got hurt real bad in the beginning of the first round by a kick to the stomach, nearly got choked out after that, escaped, and then hunted down and pummeled the guy for the rest of that round. He dominated the second round even after getting hurt again in the ribs. In the third he continued and bludgeoned his opponent with knees/elbows/and everything else until eventually the ref stepped in and stopped the fight. He never let up and never quit. That is my goal. Yes, I have said that sometimes all I can do is stand and stand is what I will do from time to time. Yet, if I can, I will continue to fight and move forward. Fight for what? I will fight for Rachel, for Trey, for Joe and Bella, for my family, for my extended family (you know who you are), for my church, for you, for whoever God puts on my heart to love and bless. If the enemy wants me down this bad, there must be some good to be done. Slowly, methodically, responsibly, and Godly, I will never let up and never quit.
32. Thus endeth the list for now.
God bless you guys. Fight the good fight, for all of us. Sometimes all we can do is stand. Sometimes not even that. I know. I have not been exactly where you are but I too have a child that is alive every day only by the grace of God. (well, aren’t we all?) I tend to think (and I am sure this is a form of arrogance) that Satan must believe I am quite a threat to keep beating at me this way. I am not going to give up. I may be punch drunk until the end but I have read The Book. I know who wins. My God is an awesome God. Scary and unfathomable, not “safe” as per C.S. Lewis, but Good. My lot is thrown with Him.
I find it a delicate balance between being defiant and yet not taunting the enemy. That being said I know that I have the Great I AM on my side and His army of angels on my side. Thanks for checking in and encouraging me/us.
Still with you guys, continued prayers. Some good news to share, that Shirer kid gets his masters this Saturday out at Messiah. Pray for a job for him too while we are on our knees. Be always hopeful.
In the movie “Rocky”, Balboa goes the distance in the fight of his life. When Adrien comes onto the ring Rocky says” where’s your hat?”. The fight of his life and all he cares about is his wife and where her hat is. Everyone thinks of Rocky as a fighting movie when in fact it is a love story. The biggest love story ever. All the challenges of fighting and love is what matters. Jay you are the Rocky Balboa of fighting for your Son. We all love you for that.
Thanks man. I actually thought of Rocky while watching the fight the other night. After he took the kick to the ribs in the first round and another early in the second, he took a punch to the kidney toward the end of round 2. He straight made the Apollo Creed midsection grab. Either way,as long as Rachel doesn’t yell from the top of the steps, “YOU CAN’T WIN!!!” I’ll be ok.
Complacency has set in and, to my shame, I have lost touch with your situation over the past month or so. I was shocked to learn that Trey’s cancer had grown considerably and that his struggle has grown more urgent. Mind you, I have continued to pray for all of you but not with a fervor that matches your current needs. I will be recruiting more of my family members and loved ones to provide additional prayers. Love, PVB
You and Rachael are such an inspiration and testimony to me. Thank you for your faith, your love, your strength. I do pray for Trey. i think of you all often.