“When you pray for Trey, besides healing, what do you pray for? Is it a certain number of months?” The question was asked to me by a loved one. I replied that I do not pray that he would live for “x” more months. I mean, if I shot too low would God then answer, “Well, I waaaaaas going to have him live for ‘x + 3’ months but since you are only praying for ‘x’ months, that’s all you get.”? No. I don’t think that my Lord and Savior works that way. Further, Trey does not know what cancer even is, let alone that he has it, and certainly does not know his diagnosis. Do I want him to stay alive long enough to know that he is dying?
Prayer. What have I learned about it since Trey was diagnosed? It’s a very valid question that I think I have come up with a very solid answer. I know less now than I thought I knew before he was diagnosed, except for one thing. It is absolutely vital.
How is it vital? How does it work? No clue. Yes, I can go through scripture and point out hundreds of directives, encouragements, and even mandates (if you will) regarding prayer but as it applies to my situation I just don’t know.
Given that none (or darn near next to none) of the chemo/various treatments that he has gone through have done one bit of good for him is it prayer alone that has kept him so “healthy” (if not alive) for this long? I don’t know. Has Trey been the YoungWarrior that he has been due to the thousands of prayers lifted up on his behalf? I don’t know. When other kids get beaten down and parents collapse under the pressure is it because of prayer that he hasn’t and we haven’t? I don’t know. Is he going to continue to shock the world (or at least his) and live 5, 10, 20, 70 more years due to prayer? I don’t know.
What do I know then? Well, I know this. Trey is an exceptional story. He has survived so much and yet suffered so little. He has endured what was to be agonizing treatments and never shown it in his demeanor or countenance. He has defied the reality of dangerously low blood counts, body functions (like a collapsed lung, broken femur, having only one kidney), side effects from chemo, medical induced coma like state in the ICU (after a surgery that almost took his life), and many many dressing changes that caused him great pain and rather than being down has risen above and played/behaved/lived like a “normal” kid. He has touched the life of every doctor/nurse/technician/therapist/vendor at a hospital where they see the cutest kids every day of the week. He has stood out as “special” to them.
I also know this, Joe and Bella aren’t surviving their brothers cancer, they are thriving. I “joke” that my goal is to keep them off of drugs when they are teenagers and hearing them say to a drug counselor “I was a happy kid, then my brother got cancer and everything changed.” I say “joke” but in reality that is one of my goals. I want them to live a “normal” life and by every account they do.
I know this. Rachel and I have not kept from having this tear us apart but rather we are closer now than when he was diagnosed. I have heard it said that this is one of the very most remarkable parts of our “story.” I have friends who are nurses who say that almost all of the parents they have seen or dealt with who have a story similar to ours have their marriages fall apart.
I know this. We have been blessed (as recently as our “Trey’s Trip to Disney” campaign) with a seemingly endless supply of support/encouragement and comfort. We have a community and communities of folks who have blessed us ever so richly. We have people who constantly love our family in so many ways…and people are praying.
Yes, people are praying. There are orphans in the Philippines, students and missionaries across India, video gamers in multiple countries, people at the wailing wall in Israel, 90 year olds on their death bed, the littlest of toddlers at bedtime, hundreds of prayer chains, thousands of churches, and I have no idea how many thousands of people. I have been told, “Jay, know this. When you can no longer stand, I will be kneeling.”
I know very little about prayer, just that it is absolutely vital…and it’s working.
Question for you… What do you tell Trey when you go to so many doctor’s visits? If he doesn’t know what cancer is, do you tell him he has it or do you avoid the C-word? Do Joe and Bella understand that he has cancer and is it something they are not supposed to talk about in front of him? Maybe you have already blogged about this, but I’d be interested in hearing how the kids interact around the topic of Trey’s diagnosis, on top of all the blogging about how you perceive it, how do you think the older siblings do? What does Trey think is causing so many doctor’s visits? Do kids in his class know why he may miss school so much?
Also, I lost my brother when I was Joe & Bella’s age. And all of my clearest memories of us together were happy ones that I’m certain my parents had a lot to do with in making sure they happened. So this Disney thing will be incredibly comforting to Joe and Bella one day just as some of the last visits to the hospital to see my brother were too. I am so happy your family has been so blessed to make it a dream come true!
Good to hear from you Bridget. Trey just knows that going to the hospital is part of his life. It is very very normal for him. Now that we are “out of treatment” he only goes once a month to keep his port flushed and get his blood work checked. He will actually ask when he “gets to go back.” He loves everyone there and they, very much so, love him. He’s kind of a celebrity there. Anyhow, when Trey was diagnosed we sat Joe and Bella (then 7 and 5) down and told them that we were in a “race”. The race was between this disease called cancer and all of us (given that Trey actually was the one who had “it” but including the doctors and medicine etc.). We told them that we would know within about 13 months (projected treatment time) if we had won or lost. If we won…yay. If we would lose, Trey would get to be with Jesus in heaven. Well, as far as they know now we haven’t won, nor have we lost. Inasmuch that Trey still doesn’t even know what cancer is we try to keep Joe and Bella from mentioning it in front of him but Rachel and I check in with them from time to time to answer any questions that they may have. Again, Trey doesn’t think that going to the doctor’s is anything out of the ordinary so he never asks why. Also, he goes less now than ever before. He also doesn’t miss school to go to the doctors so I don’t believe that any of his classmates even know that he has cancer, granted his teachers are well aware.
I do remember that your brother had passed when you were young. I am so thankful that your memories are good ones and pray the same for Joe and Bella. My heart breaks for that little girl (you) who had to say goodbye to her brother. One of my primary concerns is that life is as “normal” for them as possible. I just don’t want them to end up on some couch telling a counselor someday, “Yeah, my childhood was ok, then my brother got cancer and I didn’t seem to matter anymore” or something like that.
Thanks for asking so many good questions. Thanks for your interest and support. Keep taking good care of that beautiful puppy of yours!