March 28, 2010 Eric

We had a gorgeous day in Austin again, spring is just amazing here. Max & Ruby are singing really pretty and I think it was a good investment :)

The girls 'adopted' friend - Story had a sleep over last night, it was her first sleep over ever and she was a little anxious( she does spend a lot of time here so I see her as my adopted child). She came down a few times, stayed with me and then she said (at 1am) - I really want you to call my mom now so I can go home. I got up from her bed and told her, I'll be right back.... and went to my own bed and went to sleep. (hoping that she would fall asleep and forget...) an hour later - Chloe and Story are standing by my bed - Aj barks: That is enough go to sleep! And then we didn't see them again until this morning when they all woke up and played and laughed their heads off!
Then we spent the day at Story's parents house just hanging out in their back yard. Aj was out the whole day. Still some head ache, Chris suggested it could be allergies so he took a zyrtec when we got home (but didn't work)
When we had finished dinner the phone rang and I didn't know the number, picked up and its a guy who is called Eric. Last week I contacted MD Anderson's network department and asked if they could find me someone who has Aj's exact DX, they found one who had said it was ok to contact him. That was Eric!
He has exactly Aj's DX: Anaplastic Large Cell Lymphoma/ T Cell Lymphoma ALK +

We put him on speaker phone so we could both talk to him and it shows out that he has pretty much gone through what Aj has and is going through right now.

Eric is 26 years old, about 2 years ago he started getting fevers and took a few days off from work. (around Christmas) he then got worse and worse and ended up in Hospital St. Lukes in Houston. (he lives in Houston) They did a bunch of tests on him and his lymph nodes were swollen so they did a biopsy on one on his neck. It came back with lymphoma DX. That is about the only place where his disease is different than Aj's.. his were only in the lymph nodes. So his is a stage 3B - Aj is 4B, thanks to that Aj's is in the bone marrow. But both of them had the presentation of night sweats, fevers and being very very sick before which gives them the B after the number.

Stage I

Cancerous cells are found in only one lymph node group or one area outside of the lymphatic system

Stage II

Two lymph groups are affected on the same side of the diaphragm, or one lymph group and a nearby organ are affected.

Stage III

Lymph groups on both sides of the diaphragm are involved. Lymph cells may also have moved to one internal organ, such as the liver or lungs. Cells may also have metastasized to the spleen.

Stage IV

More than one organ is involved. Bone marrow may also be affected.

Eric was put on CHOP - originally planned for 8 treatments but he did so well that he only needed 6. He said that he felt sick for about 1.5 weeks after the Chop and then he got better and felt pretty good just before the next treatment. (just like Aj - we were sitting there just thinking - check had that, check done that, check - been through that. A lot of the things were the same)

E also only got Neulasta once and he couldn't say why that was. His lab works were fine and he was doing well. He had a thought that maybe since Aj's is in the bone marrow they need to boost the bone marrow to produce more white blood cells to help fight it. Which sounds like a pretty reasonable thought. 

So back to E, he was in hospital for about 2.5 weeks when he got diagnosed because they also thought he had another infection in his body. He had a port put in (they have taken it out) and he got CHOP. One thing that he would get is vertigo - that when he has been sitting down and stands up, he would almost black out and fall over. It would be black in front of his eyes and he'd loose balance.  He also had 2 blood transfusions (NOT TRANSPLANTS) during the time of treatment - fresh blood. 

Now he does CT and PET scans every 3 months to follow up and see that it hasn't come back, which he said is obviously very nerve wracking time. But so far so good! 

He doesn't have any history of cancer in the family and can't possibly think of anything that could have caused him to get it. He was very healthy before and active, he said same thing as with our friends - they were chocked to find out about it because he was a healthy person. The cancer has now been in remission for 1.5 years and he has trained for triathlon after recovery. So he is feeling good and stronger.

Even though this is the same DX as Aj its slightly different because of how spread it is. But again - we have to look for positive things and if he had it in all of his lymph nodes, all over his body it was pretty spread on E and he had 6 treatments and then gone - that is really encouraging. E also said that he had heard someone say, "if someone was holding a gun to his head and told him, you need to pick a cancer to have. This would be the one to pick", because it has a very good outlook. That its aggressive only helps it to respond better to treatment. 

This is so encouraging to hear and to hear it directly from someone who has had it and is fine today. :) For sure that made me so happy today!