pastorjfreeman

Trey’s getting Campath now. Should be done around 4:30pm! Praying for no surprises.

I’m back with Trey and he’s doing pretty good. His liver enzymes were down this morning, still high, but not nearly as high as they’ve been. His bilirubin is well within the normal range too…so that’s great.

He does have a strange looking rash in his abdominal area, that has spread a little to his tummy and on his back. They are going to biopsy that tomorrow and see what it is. We are praying it is just a reaction to the Campath or meds, and not a result of the abnormal cells. Please pray about this. I would love to see the rash begin to go down in the next 24 hours.

Also, I think Trey’s tummy looks smaller and is softer. It’s not nearly as big as it has been. I am sure part of that is because his steroid dosage has been reduced, but I’m also praying perhaps his liver and spleen are reducing in size too. The doctor felt his tummy this morning and his spleen is still enlarged, but his tummy just looks smaller.

They will do another flow cytometry next week, along with an ultrasound of the tummy. I’m praying the results of these things will stagger the minds of the doctors. I pray the abnormal cell percentage is non-existent and that the ultrasound shows a normal sized spleen. I’m asking God for these things, recognizing He will do as He pleases…but I believe He can do the miraculous and we simply trust Him.

Trey has also been fever free for over 24 hours and he has not complained of any tummy pain in over 24 hours…both wonderful blessings! Trust me, Emily and I have learned not to make too much of these things, but we sure celebrate as many victories as possible along the way.

I just think Trey looks better than he has in a while and I’m giving God glory for that. Keep your praying going!!!

Don’t forget about the bone marrow drive at FBC Newcastle this Wednesday, May 8, from 5pm-8pm. You must be in good health, between the ages of 18-44, and willing to have your mouth swabbed and DNA entered into the national marrow registry. Please spread the word. For those who cannot be there, go to http://m.marrow.org/ to find out how you can help where you live!

Thanks everyone!!!

Ok…it’s exciting to see what the bone marrow drive is shaping up to look like. Lots and lots of interested people. However, many are asking about where they can be tested if they can’t be at FBC Newcastle on Wednesday. I’m getting more messages than I can keep up with and I need go spreading information. So, here it goes:

1. If you can’t make it Wednesday night, please visit the wen site below. Please point everyone to this web site:
http://marrow.org/Home.aspx to help you get registered elsewhere;

2. Remember, you must be healthy and between the ages of 18-44. Don’t forget, your mouth swab will register you in the national marrow donor program database. If you are a match, they will contact you. If you’re already in the national database, you don’t need to register again. If you’re not a match for Trey, you may be a life saving match for someone else.

I hope this helps everyone! I really need help getting all this information out..,I just can’t keep up with all the messages I’m getting. I love all the interest and support though. I can’t wait to see who Trey’s match is…God will provide! Keep praying!!!

Here is the official link to the News 9 video of Trey. Watch it and pass it along. Thank you!

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

Here is a rough version of the news 9 interview! I’ll post a link when news 9 makes it available.

Channel 9 news did a short interview with me today about Trey. It will be on the 10pm news tonight. Forgive me in advance for the tears I shed during the interview. :-)

Update from Emily:

Trey has had a good weekend. He has been resting alot. When he laughs it is the most wonderful sound in the world!!!
There have been frequent fevers for the last 24 hours. Blood work this morning revealed a bacterial infection in the blood, which is probably to blame. He is getting antibiotics now that should take care of it. A risk of campath is this type of infection because his system is so suppressed. They will watch him today to see if we can go ahead with the campath tomorrow or wait a day or two. We, of course, are praying for immediate healing so that there is no delay.

“Trust in him AT ALL TIMES, O people; pour out your hearts to him, for God is our refuge.” -Psalm 62:8

Not much to update on Trey. I asked Emily to put something out today. She will a little later. He’s done pretty good though. A couple of small fevers yesterday, but he ate some goldfish and drank some milk…that’s improvement. Keep praying…big things are coming…and we will not be able to face them without the Lord’s help. We love you…together in the battle!

Jeremy

Over the last several months, people have asked lots of questions about Trey’s situation and tried to offer help. Here is a brief synopsis of what Trey is facing. Hopefully this will help clarify what is going on with Trey for everyone. Feel free to pass this on to others:

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.

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:

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

Emily just told me that the Campath is complete. Trey did great. He has a tendency to react after…even up to two hours after…so keep praying for him when you think about it. We are grateful today went better than Wednesday though. Thank You Lord for Your goodness and grace!