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
I want to be a donor! I don’t know if they’ll allow diabetics, but I will find out! Hope I can help in some way. Still praying…