We left early this morning to drive down to MD Anderson again. The kids had to come because we had to go to the Swedish Embassy and sign some papers so that they can get Swedish Passports this summer. They are dual citizens... so why not!?
Girls stayed in the child center at the hospital which was just a small room full of toys, but they had fun. Had to sign off on that they hadn't been sick or treated for anything lately so they wouldn't bring germs to the hospital.
Dr Fayad came in and even before he sits down he says that CT/PET scan and biopsy looks good no lymphoma *YEAH* . The PCR test wasn't ready last time he checked, but a second later the nurse came in and handed him some papers and that was the PCR results. They test small small cells and they test them for alpha, beta & gamma chromosomes or something like that and the gamma had a trace of a malignant cell. This is the one that tested positive last time and this time it was less than last time but something there.
Dr. Fayad told us again that Aj is at high risk for relapse so he will keep a very close eye on him in the future. If he relapses it will be stem cell transplant after a few doses of Chemo. God, do I hope it will never have to come to that. But as we figured... we have no power over this and no point worrying about anything that is not in front of us.
So back to PCR test. The malignant trace they found, COULD be something that has been there, even before cancer. Some people just have this in their bodies and that is 'normal' But, since Aj was diagnosed with T Cell Lymphoma, Dr Fayad has to think it could have something to do with the lymphoma. - maybe it does maybe it doesn't....
So he is thinking to put Aj on another two cycles of Chop and then a new biopsy. But he wants to discuss with other doctors tomorrow when they have a panel put together for cases like this. He was also going to call his friend a Doctor who moved to Washington but is a specialist in T cell lymphomas.
We are going to email him tomorrow to have him call us when they panel has talked so we know what the next step is. Both of us are pretty sure they will put him on two more treatments, just to be on the safe side kind of. It wouldn't make sense if they didn't. Of course this sucks, but rather safe than sorry.... I mean what choice does he really have?? Not a whole lot. I feel bad for Aj that he has to feel so rotten when they have done it. Of course I rather him have do the two extra treatments if that means it would take away anything that could be of a threat.
I did feel a little bit like someone kicked from the left field when they said the PCR test was still positive. In my mind I haven't had any doubts that it would be anything but neg today. But then again, the mere fact that he doesn't have any lymphoma in his bone marrow is worth celebrating over and over again!! Its mixed feelings over todays visit. (from my side)
Remember Eric? The guy who was diagnosed with the exactly same DX as Adrian. I asked him way back how it was to live with it in your past. He said that of course he would think about it a lot in the beginning but then it would fade more and more until a check up day would come and then he would be a little nervous. I think its the same for everyone... and its going to be for us too. All I am trying to focus on right now is - NO LYMPHOMA :) good stuff - positive thoughts/energy!!! Also I am thinking about my dear friend Staffan, his mom is having surgery for breast cancer tomorrow - so send a little prayer for her, please.
Dr Fayad said it was totally ok for him to go to Sweden and if he needs another two doses of Chop, I'm not sure when or how soon he would need it. I think it would actually be this week so hopefully he would be recovered by the time we leave for Sweden. Or if he could wait until back from there.... will ask Dr. Fayad tomorrow when we speak to him.
OHH!! DUHHHH!!! He gave us his card with his personal email today - ABOUT TIME!!! he was like - oh that other email port needs to go through screenings and stuff, just email me and I will call back same day! God!! how much this could have saved me!!! Oh well... :)
Also, again - AJ looks and feels great. He has been wake boarding a few times and also went out jogging the other day. So he feel stronger and looks it too.
The power port can be taken out as soon as he is officially in remission - either after tomorrow or after the two extra treatments. Also he would do a check up with Dr. H after 3 months, pet/ct scan and blood works and then after 6 months he would go to Houston to do biopsy - Dr F feels they are so much better doing biopsys there :) I'm not objecting!! . (This is after remission had been made official)
I asked Dr. Fayad what to look for in the future as for symptoms - not to be negative at all, just to be aware... He said - same as he had before, fatigue, chills, night sweats, fever also head aches, cramping in face - pretty much anything that is not a cold I think.. Even a sneeze is going to make me worried now...
Aj is not worried, he says he feels good and that is all that matters. I guess that is a great attitude to have. It should be a sign of how he is doing. Hopefully the PCR gamma thing is something 'normal' for him :)
Anyway and any how... Aj is and has been a trooper through this whole ordeal. He has/is been amazing with everything he has experienced and seen, he has been able to just look forward. Just to walk into MD Anderson would give many people chills. I got chills today when I saw an old lady in a wheel chair hooked up to 4 bags with chemo. we were saying that the bags should have the scull and bones on them - POISON -
What I mean is that you see so many people who are sick and you never know what the outcome will be for anyone, children or old. Even after seeing cases close up and everything - Adrian has been able to keep his head up and just focus on future, beat cancer. He is a tough cookie.... :) :) :) Also the girls, they might not be fully aware of what has been going on - but they will one day. One of the reasons for writing this blog is for them, so they can understand what pappa managed to beat when he was 35 :) I'm sure he will tell them too, but knowing the James boys' memory (not your strong side!) - a lot of details will be left out :):):)
Right now, right this moment - He is my Hero and the girls my Heroines.
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