Pray for Trey

(all images provided)

Trey is an adorable little seven year old boy, who loves video games, putting puzzles together and his family.

Trey at six

Trey at six

Clowning with his big brother during a family photo shoot!

Clowning with his big brother during a family photo shoot!

He is also VERY sick. He has a rare autoimmune disease and now an even rarer form of Leukemia!

Screen Shot 2013-05-06 at 10.22.20 AM

Trey has gotten very good at putting together puzzles.

With his mommy, Emily

With his mommy, Emily

Trey needs all our FERVENT prayers and our help. The First Baptist Church in  Newcastle, OK (where Trey’s daddy pastors) is holding a bone marrow match search on Wednesday evening from 5-8 p.m.. He desperately needs a  non-familiar match for his third bone marrow transplant! If you live in the area are between the age of 18-44, please come and get screened. It is only a mouth swab to locate a suitable donor. If you don’t live in the area – PLEASE PRAY FOR HEALING!

A local group of 8th graders praying for Trey

A local group of 8th graders praying for Trey

I am too old, but I’m trying to do what I can by raising awareness of this need for a donor and for seeking more prayer warriors! As many of you know, my own granddaughter, Isabelle, is nearing the end of her treatment for Leukemia and will be considered in remission on December 28, 2013! I thank God and give Him all the praise for her healing, and I’m asking Him to bless Trey as well.

With the local Jr. High basketball team

With the local Jr. High basketball team

A local news channel did an interview and story on this, please visit the link below, it will touch your heart! If you can’t click on the link, please copy and paste in your browser, it will touch your hearts.

http://www.news9.com/story/22167269/doctors-family-help-7-year-old-newcastle-boy-fight-for-his-life

This is a post that his daddy, Jeremy Freeman posted on the Pray for Trey group page on Facebook. It is so hard to understand why this little guy has gone through so much. I know he has blessed so many people with his awesome faith and the faith and his positive outlook. AGAIN, PLEASE PRAY WITH A FERVENT HEART!

With his daddy, Jeremy

With his daddy, Jeremy

“The angel of the Lord encamps around those who fear Him, and delivers them. When the righteous cry for help, the Lord hears and delivers them out of all their troubles. (Psalms 34:7, 17).”

From Jeremy Freeman:

Trey Freeman was born on April 13, 2006. He was born with X-Linked Severe Combined Immunodeficiency Syndrome (also knows as the bubble boy disease/SCIDS). Two weeks after birth, he received a bone marrow transplant from his sister who is a perfect HLA-typed match. Trey did pretty good for about six years. Last fall (September 2012), Trey began to get really sick. It took our doctors some time to figure out what was happening to him, but they soon discovered that his sister’s cells had begun to act like a cancer in his blood, much like lukemia. He was diagnosed with a form of LGL (large granular lukemia). Our doctors have told us though that there is no other known case like Trey’s that they have been able to find. To develop LGL 6 years post transplant is unheard of…and Trey doesn’t even have true LGL, just a variation of it. There are few facilities and doctors that are even aware of this type of disease, much less treat it.

The first step was to get the abnormal, lukemia type cells, that were growing wild in Trey’s body under control. The next step was to condition him for another transplant (using chemotherapy). The final step was to have his sister donate bone marrow again and hope that it would work this time for good. 

Trey received his second bone marrow transplant on December 27, 2012 after ten days of chemotherapy preparation. His sister donated for the second time. Soon after the transplant, it was discovered that the abnormal cells had returned..they really never fully left. Our doctors began and have been working hard over the past several months trying to keep these fast growing abnormal cells under control. They have tried numerous types of treatments, all of which have slowed the growth, but not stopped it. They recently finally found a drug called Campath that is working, and getting these abnormal cells into remission. In spite of that, our doctors still believe that Trey will need another transplant…this time from an unrelated donor. The reason is that while they have been working to kill the bad cells, there has also been damage to the good cells. So, even if the bad cells were to stop growing right now, it is not likely that the good cells from the transplant would recover. There has just been too much damage. Trey will also have to have his spleen removed because the treatments are not destroying the abnormal cells that are residing there, and his enlarged spleen continues to plague him.

This is a very sweet and loving family. PLEASE PRAY FOR ALL OF THEM!

This is a very sweet and loving family. PLEASE PRAY FOR ALL OF THEM!


I have been doing as much research as possible on this situation. There is very little out there by the way. I found a doctor in Hershey, PA who is the one who discovered LGL. I contacted him, shared Trey’s story and put him in touch with our doctors. He is an expert on LGL, but he was quick to say that Trey does not have true LGL, therefore his situation is more complex. Here is a portion of an email he recently sent me after he talked to Trey’s doctor:

<blockquote></blockquote>
“We discussed possible diagnoses and plan for treatment. This is not a typical patient with LGL leukemia for many reasons. Another possible diagnosis is hepatosplenic T cell lymphoma, which is often difficult to diagnose. We discussed the possibility of taking out the spleen for two reasons: 1. To help make an accurate diagnosis, and 2. To possibly help control the disease.
I did agree with the long term plan of another transplant with a full conditioning regimen. We also recently have made some progress in characterizing a “new” illness which looks like LGL but has an atypical clinical presentation and clinical course
There are some similarities with the illness that your son has, including the features of an aggressive clinical picture, considerable enlargement of liver and spleen and cells with the phenotype that your son has in the blood: ie CD3+CD56+. All 5 of the patients that we have seen like this have a mutation in a gene called STAT5.”

As you can see, Trey’s situation is unique and complex. As our doctor’s have said, “We are in uncharted waters.” By the way, I hate uncharted waters. So, right now, our doctors are working to get these abnormal cells into remission, then they plan to take out Trey’s spleen, and finally do chemotherapy and give him another transplant. It is essential that we find a matched donor to help Trey. We know God is in control and are asking him to provide an unrelated match to help aid Trey’s transplant process. Trey could have a transplant from a half match from me or Emily, but a full match is best. Please continue to pray for Trey, our family and our doctors. The next few months will be incredibly important. 

I know that’s a lot, and I hope it helps.

Prior to Trey's illness

Prior to Trey’s illness



“The Lord is good, a stronghold in the day of trouble, and He knows those who trust in Him.” -Nahum 1:7

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15 Comments (+add yours?)

  1. apronheadlilly
    May 06, 2013 @ 16:28:04

    😦 Lord, help!

    Reply

  2. Kathy Gaynor
    May 06, 2013 @ 19:54:26

    Love what you’ve done Darla~

    Reply

  3. Ingrid
    May 07, 2013 @ 00:10:12

    Years ago I had a close friend who’s little boy battled Leukemia…. twice. It was a very challenging time for all. He just started high school and is doing great. You would never guess the heck he went through when he was five. Sending prayers!

    Reply

    • Darla Welchel
      May 07, 2013 @ 00:44:24

      Thanks Ingrid. Little Trey’s condition is quite rare. He was born with X-Linked Severe Combined Immunodeficiency Syndrome (also knows as the bubble boy disease/SCIDS). He had his first transplant at 2 weeks old! His sister was his perfect match. When he got sick this past year, the doctors were stumped because most don’t have a reaction or a reoccurrence six years post transplant. At first they thought it was something else and now they believe it is a type (very rare) of Leukemia. At least that is how they are treating it.
      Prayers is what it is going to take because modern medicine doesn’t seem to be doing the trick. His spleen will have to be removed because of all the chemo and his liver is enlarged.
      Pass it on, he needs a miracle!

      Reply

    • Darla Welchel
      May 10, 2013 @ 15:48:54

      I know exactly what he went through. Isabelle almost died twice and they kept her in a morphine coma for about three weeks because of the pain she was in from the effects of her first chemo. ‘
      I really hate cancer. Lost both my parents and my mom-n-law to cancer. It really sucks! 😛

      Reply

  4. diannegray
    May 07, 2013 @ 20:38:23

    Sending prayers, Darla. What a brilliant post and a brilliant group of people who have rallied around to help this family and this dear little boy.

    Reply

  5. Trackback: Awesome Prayers for Trey! | Through The Lens
  6. ellie thomas
    Jul 24, 2013 @ 16:17:19

    I will pray for trey to get better and for his family to get through these hard times, Thank you for posting this so that everyone can pray for this sweet little boy.

    Reply

    • Darla Welchel
      Jul 24, 2013 @ 18:11:16

      You are very welcome Ellie; my own granddaughter has leukemia and I know how important prayer was/is for her and her family. She is doing well and is heading toward her “ring the bell” date of being in official remission. We are looking forward to the day of no more drugs!
      My prayer is that Trey will also have a special day like Isabelle’s soon!

      Reply

    • Darla Welchel
      Jul 28, 2013 @ 16:10:56

      you are welcome. He was put in PICU last night! NEEDS PRAYER TODAY!

      Reply

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