“The Hurt & The Healer”

Usually, when you think of the first Thanksgiving, it’s with the birth of a child, or your first as a wedded couple.  It might be in your new home with your new dishes.  This was a first for the Erwin family.  Actually, the first to have Thanksgiving at our home.  But I didn’t cook.  I slept all morning, till 2:30.  Collin played video games.  My sisters watched the parade.  Jay worked at the fire department.  Yet everyone felt the heaviness.  The laughter was gone.  Or at least mine was.  It was the first time I actually saw Collin sad.  I would call his name over and over again.  He came down and sat on the stairs and then he went back up to his room.  I went up to Trey’s room where he was watching TV and he was there with his hoodie over his head.  I knew then he was sad and I didn’t make him come downstairs. I am thankful we did not have to travel, Collin and I would not have been able to put those faces on. Thank goodness for Bobby to save the day to have fun with Collin.

One thing I realized late this afternoon was that God is the same.  He never changes. Hebrews 13:8 says, “Jesus Christ is the same yesterday and today and forever.”  As sad as I have been and NOT wanting to say HAPPY THANKSGIVING sarcastically, because I could honestly care less, God still loves me, He feels my pain, and He is the same God who has been holding me as I cry.  I AM thankful He is the same!

Trey loved holidays.  We always played games on Thanksgiving night.  Not tonight.  Everyone was gone from the house by 5 p.m. and the day went back to the way it started.  I am heading back to bed and Collin is going to watch a movie.

I thought about everyone gathering today as families and how they must be celebrating.  Some families welcoming cousins, aunts, grandparents; cooking turkeys, pies; taking naps after gorging on food, but what about the families missing a member or those families who are not getting along with another family member.  Some of this is out of our control and some of it is not.  I can’t imagine any family situation being so hard that you could not reconcile.  As I posted with our last year’s Thanksgiving picture, be thankful because things can change very fast.  Our family dynamic changed in four short months.  You have no earthly idea how much Jay and I would give to hold him just one more time or hear his laughter – or even have him ask us to bring up his laundry so he could obsessively fold it.  After Thanksgiving, aunts, uncles, cousins, etc. will drive back to their homes, say what a wonderful holiday it was and probably not see some of the same members of the family again next year.  Just think about that.

Collin had his MRI on Monday at St. Jude.  It was totally clear.  That is what we are thankful for this Thanksgiving.  We have one son that at this point has a clear baseline of tests and a healthy, normal pancreas.  He does have Eosinophilic Esophagitis that St. Jude partnering with other doctors will be handling.  We are glad to have found this.  It is not related to cancer, but we want to make sure we do not do anything to trigger any cancer cells.  We have the most wonderful dr. at St. Jude.  We are crazy about Sara Federico. We will always have to deal with the P16 gene and he will be screened once a year with at least an MRI at St. Jude.  He does have some spots that I want removed.

I urge you to be extra thankful for the ones you love during this holiday season.  Tell them.  Hug them.  Make sure they know.  Tomorrow may be different.  In four months, it might be different.

Col. 3:12-17

¹² Since God chose you to be the holy people he loves, you must clothe yourselves with tender-hearted mercy, kindness, humility, gentleness, and patience. ¹³ Make allowance for each other’s faults, and forgive anyone who offends you. Remember, the Lord forgave you, so you must forgive others. ¹⁴ Above all, clothe yourselves with love, which binds us all together in perfect harmony. ¹⁵ And let the peace that comes from Christ rule in your hearts. For as members of one body you are called to live in peace. And always be thankful.

¹⁶ Let the message about Christ, in all its richness, fill your lives. Teach and counsel each other with all the wisdom he gives. Sing psalms and hymns and spiritual songs to God with thankful hearts. ¹⁷ And whatever you do or say, do it as a representative of the Lord Jesus, giving thanks through him to God the Father.

My Collin…

I haven’t done the “I’m thankful for” because I’ve learned the hard way you need to be thankful all year long and express it also.  Honestly, some of it gets to me because some days I miss Trey sooo much, I’m not thankful.  Oh, My, that might be disrespectful, but I sure don’t want you to walk in my shoes.  That’s a topic for another day.  But today, I will say that I am so thankful for Dr. Scott Kloek who I can text and he called me immediately on his day off, met Jay, Collin, and Cindy Few at the office to look at Collin who had a migraine related to the fentanyl he had from the endoscopy.  Thank you to my best friend Cindy who rushed to get him from school and get him to the doctor! He was feeling much better this morning from the medicine Dr. Kloek gave him! 

OH – And the biopsies were normal, except for his esophagus.  It is Eosinophilic Esophagitis which is an allergy.  If they would have biopsied his colon, this same diagnosis would have shown up there.  Dr. Farooq thinks this might be contributing to his upset stomach sometimes.  He has never been able to eat steak and we would always get on him.  He would say he could not swallow it.  We thought this was just his way of saying he did not like it.  Dr. Farooq confirmed BEFORE getting the biopsy back that is one of the symptoms, not being able to swallow.  Wow.  Here again, listen to your children, especially if they are telling you the same thing over and over again.  This diagnosis can change Collin’s life for the better!

Of course, what we are most excited about is that his pancreas looked good.  A healthy pancreas, praise the Lord!  We know that Collin does not understand everything that is going on.  But I think he understands at this point he’s okay.  The P16 gene is in control somewhat and that is what we pray over.

We will have to undergo an MRI next Monday.  Our schedule was modified so that we will be at St. Jude on Monday for the MRI and he will be put to sleep for it.  We will make sure he will not have fentanyl.  I know that having the MRI and the EUS that he had on Monday will make us all feel better when we get positive results.  Yes, that’s what I am going on, getting positive results.  We have faith that God is hearing our prayers to take care of Collin.  “For nothing will be impossible with God.”  Luke 1:37

We ask that you continue to pray for us as we take one new step each day.  I am praying for many opportunities to share what God has done for us, but at the same time still grieving.  I am SO thankful for our friends that surround us, but yet, I still lean on them heavily.  Thankful for a friend who cleans my house, walks in it nasty, and loves me anyway! I’m still distracted at work and do not know how I get things accomplished, but yet I am very thankful I still have a job.  I am very thankful for St. Jude and what they meant to us with Trey, yet we now are back with Collin as a patient.  Dr. Sara Federico ROCKS!  She’s my friend, my confidant, my sister from another mother, and both of my sons doctor.  How lucky am I!

For I ask this of you.  Think not of yourselves, but think of others and be thankful. Share with others what Christ has done for you.  You might find it easier than you think! – Colossians 3:15 “Let the peace of Christ rule in your hearts, to which indeed you were called in one body; and be thankful.”

Signed, sleepy, but thankful!  (I went to bed at 7 p.m. last night after a peanut butter and jelly sandwhich.  We are exhausted.)

~Trey, you would have been so proud of Collin.  It took him 10 seconds before he said ouch after they put the IV in.  He did great!  I just don’t want him to have to get use to needles like you did buddy.  I know you were watching after him.  Thankful for brothers and what you taught him even when you were teasing him.  I wish you were here to tease him some more, but I’m thankful that your buddies like Taylor Johnson and J.D. McMillan have come over to play video games with him.  You taught encouragement and God is still reaching through you.  But no more pain, no more pain.  Except my pain.~

Collin made it through the endoscopy just fine. I was able to be with him until he went completely asleep. Of course, since he has never been put to sleep before, he was out with the pre-meds. I got funny pictures of him, like he asked, so he could go back and look at them.

We were sitting the room during the procedure and the lights went out in the hospital. TWICE! They came to check on us and I thought, “Don’t worry about US, I’m worried about my child!” They called from the GI Lab and said they were working off a generator and he was fine. They had to cancel the rest of the surgeries for the day. We were very lucky that they had already started on Collin or he would not have been able to have the procedure done.

Dr. Farooq was in our room within 45 minutes! His pancreas looked great, he said. He took biopsies of his bile duct area, duodenum, stomach, and esophagus. He said that he saw some abnormality in his esophagus and we will know more when the biopsy comes back. The biggest relief was seeing a normal pancreas at this point for a baseline endoscopy.

Our schedule has been changed a little and we will spend all day at St. Jude next Monday when Collin will have his MRI. They will take so many slices (pictures) during the MRI that they will need to put him to sleep for this. We will be there all day and are not scheduled to see Dr. Federico till 5 p.m. and his MRI is at 8 a.m. As they say, not our first rodeo. But we know to take things to do. And definitely know our way around.

Collin wasn’t feeling very well yesterday. It took about four hours to get him awake to the point that they would let us go home after the procedure. His throat was very sore. I got him a large blast from Sonic Monday night and it has taken him two days to eat it. He tried to go to school yesterday and that’s all we asked him to do was try. He ended up coming home around 10:30, which was okay with me. I don’t bounce back after procedures the day after either. He ended up sleeping with me last night, which is VERY rare. We crashed about 8 p.m.

Please continue to pray for Collin as we spend next week at St. Jude. With everything he is facing and dealing with, I personally have decided to not make school something that he hates. He is so down on himself about school because he is not doing well in any of his major subjects. I just want us to get through this year and know that he will bounce back once the enormity of what we have faced has somewhat faded into the back of his mind. I can’t imagine handling everything he is trying to handle at age 13.

One other request, if you do not live in Memphis, you might not have seen the news. Ron Hardin who works in the medicine room at St. Jude had his bag stolen out of his car. Ron collected the bracelets from the kids of St. Jude. Trey gave him one of his Pray for Trey bracelets and it was stolen. I am working on trying to replace some of his bracelets. If you know of someone who has a St. Jude patient with their own bracelet that they could mail to me, please send them to me at 130 N. Court, Memphis, TN 38103. I have told Ron that I will work as best I can to replace as many as I can to help with the memories of the families that invested in his life and all the families HE invested in.

Thank you for being a prayer warrior for my family. Days have been rough lately. I had a very bad day Sunday and all I could do was cry. Jay asked me what triggered it and it was just looking at Trey’s picture and knowing on Monday I was going to walk into a hospital with my baby to go down the path again. I know that God has a purpose and with all things he can turn a situation for good. We just have to be willing to be the open vessel. I have to always remember, I am a sinner saved by grace and that sometimes my mourning can turn to pity and I need to snap out of it! Some days are better than others. Without my husband, I’m telling you, I do not know what I would do without Jay. Some situations like this pull people so far apart. Not us. I’m not saying we don’t have bad days, but he is always there for me for a good hug. I love his hugs. And if there is anything I miss about Trey, it’s his hugs that his daddy taught him. Teach your children how to hug. Even if you are playing around. They will one day give comfort to someone in need and might save them from something that they will never know about.

1 Peter 3:17-18
“For it is better, if God should will it so, that you suffer for doing what is right rather than for doing what is wrong. For Christ also died for sins once for all, the just for the unjust, so that HE might bring us to God, having been put to death in the flesh, but made alive in the spirit. . .”

P.S.  I’m going to post a picture of Jay and Trey.  This is while we were waiting in the Clinic at St. Jude on day.  Some days it can drive you crazy – the waiting.  I think they expressed their feelings very well.  I think I have a right to say this as many times as I like.  I sure miss my boy.  I miss his smile and how he made me laugh and made others smile.  He showed Jesus.

Once there was a little boy named Harrison…I could start this blog like that.  I’ve mentioned Harrison before.  He’s the sweetest little three-year old. I believe when I talked about him last, I told everyone on the caringbridge that he returned to Trey the prayer bear that I had given him when he was born.  In turn, I gave him a picture of Trey in his football uniform.  I’d like to share a little bit more about Harrison and how he is learning about heaven and Jesus through Trey.

In September, Leigh, Harrison’s mom sent me this message – “Ok. So this morning- totally out of the blue- Harrison said- mama. Where is trey? And this sweet question led to a whole conversation about him. I told him he was in heaven! He asked- when’s him coming home? I told him that he wasn’t coming home- that heaven was his home now. He asked- what’s him doing up there? I told him that he was getting to spend every moment with Jesus, worshipping Him and singing songs to Him and enjoying the place that He had made for Trey. He thought for a minute and said- that’s awesome! But I’m not ready to go to heaven. So I told him- none of us ever think we are ready- but when it’s time for Jesus to come get us- then we are so happy and heaven is so wonderful- that we are so happy that He did! He thought for a few more min and then said- ok mama. And smiled the biggest smile. Just wanted you to know that your baby is helping my baby understand a little bit about heaven. Thank you. Xoxo”

All could do was thank Leigh for being consistent in teaching Harrison about Jesus and telling him the truth of where Trey was.  Jesus was so tender with children.  “Children are a heritage from the Lord, offspring a reward of my heart.” Ps. 127:3  Yes, we are very much rewarded by our children and it is up to parents to lead, guide, and direct them down the path that they should go.  I still rely on “Train up a child as he should go, and he will not depart from it.” Prov. 22:6  Jay and I truly believe our children are who they are because of their foundation.  That is who Trey was.

I received another message today from Leigh: “ok. So the picture you gave Harrison of Trey in his football uniform has been hanging on a bulletin board in his playroom ever since. He looks at it all the time and talks about what team he played for. Well today- he wanted me to get the picture down. And he asked all the same questions about Trey and heaven. Today he asked about you, too. “Where’s hims mama?” Well. After I got a hold of myself- I told him you were at home getting ready for church. And he wanted to know when you would see Trey again. I told him that when you went to heaven- you would see him again. Then he put Trey’s pic beside his plate and he looked at Trey all during his breakfast and then he hung him on the fridge. “Down low so I can see hims football uniform better. ” precious. Loving and praying for you every day.”

That message just touched my heart.  I told Leigh to tell Harrison to change his prayers.  He needed to start praying for Trey’s mama because she misses her buddy so much.  There are days that I just can’t take it.  Giving up is so much easier.

Leigh then sends me this message this morning:  “Harrison’s prayer this morning- “dear Jesus- thank you for Trey’s new body. Hims can run so fast now. And thank you for hims mom and dad and bruver. And Lord- just watch over them. “. Amen.”

I believe with all of my heart that God heard every word that came out of Harrison’s mouth and will come out of his mouth.  Yes, we are all born sinners, but there is an age of accountability I believe.  He believes Jesus loves him and that Trey is the place that God prepared for him.  All things that are the truth.  What a blessing to have a mom and dad in Leigh and Ronnie to guide Harrison down the road that leads to salvation and a greater walk with the Lord, no matter what happens.  God doesn’t tell us it will be easy.  Leigh already knows that.  Leigh’s faith is one of the reasons Harrison is her son.

As with the teaching and learning Harrison is experiencing about Trey and heaven, Jay and I are learning the difference between grieving and mourning.  Grief is the weight in the chest, the churning in the gut, the unspeakable thoughts and feelings.  Mourning is the outward expression of grief.  Mourning is crying, journaling, creating artwork, talking to others about the death, telling the story.  I understand Job when he said in Job 30:28 “I go about mourning without comfort; I stand up in the assembly and cry out for help.”  But I KNOW that my mourning will turn to dancing.  I just don’t know when.  And I’m going to mourn to the extent I need to until that time.  Ps. 30:11-12 “You have turned my mourning into dancing’ You have loosed my sackcloth and girded me with gladness, That my soul may sing praise to You and not be silent.  O Lord my God, I will give thanks to you forever.”  We sang that song in choir.  I loved it.

I’m glad I have Harrison prays for hims mama.  Because she drives home from work each day crying wanting her son back so desperately.  Just wanting him to be home when she gets home.  Knowing he won’t be.  Knowing that voice won’t be there.  But like Harrison said, he’s running with a new body.  No cancer.  Catching passes and dunking basketballs.  All his dreams.  But at this stage, his parents can only cry and mourn the dreams we have lost.  And look forward to next Monday when we take Collin to have an endoscopy.  Then we wait, Again.  And again, we will trust God with all we have.  That He has a purpose for ALL things – for good.

Well, you never know how the child will react, but I think I called it.  He was just fine.  Actually, he said, “I think I have IBS!” I had to keep from rolling on the floor.  We already know he does not have IBS.  I explained the entire situation in sport’s terms.  The best offense is to have a good defense and that’s what we are doing.  We made him look at our faces when we told him that he does not have cancer and he said he knows.  But, actually, until we have these baseline tests done, we do not know anything.  I think he understands that.  He knows he is now a patient of St. Jude and Dr. Federico.

I really don’t think he could have taken it any better.  He understands about the tests and how he will be put to sleep for the endoscopy.  This test has not been scheduled yet.  He will have an MRI at St. Jude on Nov. 12 and then we’ll see Dr. Federico after that.  It will be a long day at the Jude.  Another day, another child.  But like we told Collin, it’s like putting bug spray on so you won’t get bitten by mosquitos.  We did tell him if he did get cancer, we would know very quickly and be able to get started with whatever treatment is needed.

In my mind, Collin is very informed.  I told him if he ever feels like he needs to talk about it, then he needs to tell us.  We also told him if kids start to say to him that he has cancer, he can look at them and say NO, I DO NOT!

Now comes the fall out of his thoughts.  We’ll see how that goes over the next week or so.  We pray that God will grow him into a strong young man.

“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.

Psalms 19

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.