Wednesday, June 30, 2010
June 30, 2010 Port comes out tomorrow instead
They called from the Dr's office today and he was running so late that they had to reschedule for tomorrow :) -
Tuesday, June 29, 2010
June 29, 2010 Port comes out tomorrow
We are enjoying the summer break to the fullest and that Annelie is here and house sitting the perfect house in Lakeway. Its not a huge house or anything, it just has a perfect back yard with pool and deck and lounge. So nice to just hang out and kids playing. Baby O is completely fearless in the pool, guess its good and bad :) She does some right old belly flops - lucky she is wearing a life vest or it would hurt real bad.
Aj is going in to have the port removed tomorrow! That will be the last trace of any cancer or chemo - gone!!!
Pictures to come :)
Aj is going in to have the port removed tomorrow! That will be the last trace of any cancer or chemo - gone!!!
Pictures to come :)
Monday, June 28, 2010
Sunday, June 27, 2010
June 27, 2010
:) Im quite happy that I don't have anything else to report than that AJ is feeling good and looking great. This blog will not more become my 'Swedish Blog' for the summer so you can follow what we are up to in Europe.
If you don't want the alerts (which I can understand) just email me and I'll take you off the list. Otherwise feel free to come on the journey with us. :)
If you don't want the alerts (which I can understand) just email me and I'll take you off the list. Otherwise feel free to come on the journey with us. :)
Saturday, June 26, 2010
Friday, June 25, 2010
GLAD MIDSOMMAR 2010
I think this is the best Midsommar Afton/Eve ever! Dr. Fayad emailed the message below right after I had called MD Anderson and got the message that he was not in today.
We went and celebrated with ice cream - even Farfar!
They had said that it would not be of any benefit to do two more doses of chemo. Every 6 weeks he has to go and do a blood test and then 3 months CT/PET scan. So as of today - Adrian is in remission - MD ANDERSON and the board have agreed :)
I get tummy ache as I am writing this - its happy tummy ache! What a feeling! The next call I made was to make an appointment to Dr. Abilkahaled - to take the power port out - this will be next week on Wednesday. They are just going to numb the chest and pull it out. Adrian's face when I said that they weren't putting him under... :):):) - it was a picture! He was like, OMG I can't believe they are just going to numb me. Then I told him... they 'just' numbed me and took out 3 babies - I'm sure a power port is not a biggie :) :) :) LOL !
So today is a HAAAAPPYYYYYY DAY!!!!!!!
This is what I just got!!!
Yeahhhhhhhhhhhhhhh!!!!!!!
Dear Mrs James:
I presented the case on Wednesday and the group recommend to stop
treatment at 6 cycles with close monitoring
Regards
LEF
Catia James
June 25, 2010
Farfar arrived last night!!! suprise for Adrian - Tommy and I cooked up a little surprise last week and he arrived last night!
Girls are so happy and its lovely to see Farfar!!
We haven't heard anything back yet and now it won't be until next week because its Friday and they are out on Fridays!
Everyone are doing great and today its Midsommar in Sweden so...:
GLAD MIDSOMMAR!!!
Girls are so happy and its lovely to see Farfar!!
We haven't heard anything back yet and now it won't be until next week because its Friday and they are out on Fridays!
Everyone are doing great and today its Midsommar in Sweden so...:
GLAD MIDSOMMAR!!!
Thursday, June 24, 2010
Wednesday, June 23, 2010
Tuesday, June 22, 2010
June 22, 2010 MD Anderson
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.
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.
Monday, June 21, 2010
June 21, 2010
Sorry that I am not writing every day - there is not a whole lot to update. Aj looks and feels good. We go down to Houston tomorrow for test results but I have emailed them and asked if they are all ready. But of course that is not the case, so far only the PET scan test is back.
They said we should come down and then they will call us with the answers to the other ones. Feels a little crap to have to wait longer but it was expected. A week wasn't near enough last time we did this so maybe another week or so before we find out the other tests.
My friend Annelie has been staying with us for a week and its been so nice - kids have had a lot of Swedish around the last month and then we head to Sweden in less than 2 weeks so its exciting!!
They said we should come down and then they will call us with the answers to the other ones. Feels a little crap to have to wait longer but it was expected. A week wasn't near enough last time we did this so maybe another week or so before we find out the other tests.
My friend Annelie has been staying with us for a week and its been so nice - kids have had a lot of Swedish around the last month and then we head to Sweden in less than 2 weeks so its exciting!!
Saturday, June 19, 2010
Thursday, June 17, 2010
Wednesday, June 16, 2010
June 16, 2010
Aj is feeling good no pain where they took the biopsy. Hair is about 2 cm long now all over his head and he looks great. :)
Tuesday, June 15, 2010
June 15, 2010
Back home from MD Anderson and the tests are done. Now the wait begins... Next Tuesday we are supposed to get the results. But I emailed Amira tonight and asked her 1, if they could just call us and give results since they might not be ready by Tuesday. 2 if not possible just make sure that the tests are ready before we start driving down there. We can always reschedule for a later date.
We just don't want to drive down and get same as last time that all of the tests aren't back.
So we set of at 6.30 am this morning, the WHOLE family :) Kids, movies, books and stuff. It was hard to get up that early, got used to sleeping in, in the mornings. :) I dropped Aj off at MD Anderson and then I took the kids to the Children's Museum. It is hands down THE BEST one I have ever been to. Just fantastic. We spent 5 hours there and still wasn't done. But Adrian was, so we had to leave :)
He can't shower for a few days because of the biopsy, which they only did on one side this time. Sponge baths will be his deal :)
My dear friend Annelie arrived tonight and its so good to see her, its almost a year since I saw her last time. She used to live here with her daughter Emma.
It helps that she came - to take my mind of Ulrica leaving this morning. It was so sad to say good bye yesterday. She was here for two weeks with her family and we had the best time!!!
We just don't want to drive down and get same as last time that all of the tests aren't back.
So we set of at 6.30 am this morning, the WHOLE family :) Kids, movies, books and stuff. It was hard to get up that early, got used to sleeping in, in the mornings. :) I dropped Aj off at MD Anderson and then I took the kids to the Children's Museum. It is hands down THE BEST one I have ever been to. Just fantastic. We spent 5 hours there and still wasn't done. But Adrian was, so we had to leave :)
He can't shower for a few days because of the biopsy, which they only did on one side this time. Sponge baths will be his deal :)
My dear friend Annelie arrived tonight and its so good to see her, its almost a year since I saw her last time. She used to live here with her daughter Emma.
It helps that she came - to take my mind of Ulrica leaving this morning. It was so sad to say good bye yesterday. She was here for two weeks with her family and we had the best time!!!
Monday, June 14, 2010
Saturday, June 12, 2010
June 12, 2010
Aj is doing great, out wake boarding this morning. He hasn't got any side effects that he can feel so that is great.
On Tuesday we go down to Houston for the scans and biopsy and a week later back for results. This will tell us how everything looks on the inside. Judging from how he feels and looks, its got to be good :) :) :)
We have been on the lake a lot this week which has been great! I just loooooove this place where we are living - being so close to lake Austin.
On Tuesday we go down to Houston for the scans and biopsy and a week later back for results. This will tell us how everything looks on the inside. Judging from how he feels and looks, its got to be good :) :) :)
We have been on the lake a lot this week which has been great! I just loooooove this place where we are living - being so close to lake Austin.
Monday, June 7, 2010
Sunday, June 6, 2010
June 6, 2010
GRATTIS PA FODELSEDAGEN BRORSAN!!!
Jocum's birthday today and the national day of Sweden!! Big Day!
Aj is back from New York and is feeling much better. Probably the city air did him some good :) Polluted air is better than fresh Texan air.... I guess :)
I got an allergy attack today, really weird. Was out on the boat with Story and her dad Chris and all of a sudden my face is itching like crazy and my nose - it was like someone put itching powder in it. Stayed like that for about an hour then it stopped. So for sure its allergy season in Austin right now.
Saturday, June 5, 2010
June 5, 2010
Big day today... for my friend Ulrica! She is now 30 and we celebrated her with all the girls at Cheesecake factory. It was a great afternoon evening!
Aj is in New York and was feeling horrible this morning. Super congested and pressure in his head. Not sure if its sinus infection, allergies or a cold. I did speak to him later on and he felt better. He's at the boxing match at the Yankee stadium - Reggaetonville by the sound of it! Not as glamourous as Vegas :)
I'm sure its an experience though
Friday, June 4, 2010
June 4, 2010
Good Morning!!
Can't believe that I am up this early when I don't have to. Girls are officially out of school for the summer and now we have a first grader and a kindergartner and a pre kindergartner!! Wohooo! :)
Aj was up even earlier and that is what woke me up - even though I know he was trying to be super quiet. Baby - it was cute that you didn't even take a shower this morning so you wouldn't wake me up - thank you!!! :)
He is on a plane to New York today business mixed with pleasure. Barry has a fight at the Yankee stadium that he is going to tomorrow.
His fingers have been feeling a bit numb even though the drug was taken out, so not sure if that really did anything. Aj is looking really well, his hair has grown out all over his head about 1 cm so he now has a full head of hair!!! Pretty amazing actually that its has grown like it has!
I am in heaven, my friend Ulrica and family arrived the other day from Sweden and she brought little goodies and its just nice to hang out. Hopefully we are off to splash park today. Its also great for girls to have her girls to speak Swedish to. Kine is 4 (soon 5) and Linn is 2 and Olivia is all over Linn, wanted to take care of her, very cute.
Wednesday, June 2, 2010
Tuesday, June 1, 2010
June 1, 2010
Wow! Summer is really here - today it was up in the 100's... way to warm for me - can't wait for European cold summer :) :) :)
Aj had a bit of tingle in his fingers today - even though the Vincristine was taken out of the chop. It went away, but still. Not very nice...
Otherwise he was out washing his car and feeling a bit better, he said it was like a burning feeling in his chest. I was thinking he needed tums, but he said its more toxic feeling.
Soon it will be all gone.
Going to see if we can find another nutritionist - Dr. Luepnitz seems to have been helping a lot of people here in Austin, but there is something that is not right. Gut is telling me its not right. Aj feels the same way - he wants to find another one.
My friend Ulrica from Sweden arrived in today - so excited!!!!!
Aj had a bit of tingle in his fingers today - even though the Vincristine was taken out of the chop. It went away, but still. Not very nice...
Otherwise he was out washing his car and feeling a bit better, he said it was like a burning feeling in his chest. I was thinking he needed tums, but he said its more toxic feeling.
Soon it will be all gone.
Going to see if we can find another nutritionist - Dr. Luepnitz seems to have been helping a lot of people here in Austin, but there is something that is not right. Gut is telling me its not right. Aj feels the same way - he wants to find another one.
My friend Ulrica from Sweden arrived in today - so excited!!!!!
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