Adrian is still in Houston and is going for labs about every other day. Today he could start feeling bone ache, which is from the Neupogen. I was actually surprised it has taken this long for it to come, but on the other hand it is a good thing because it means the bone marrow is cranking out stem cells.
Other than the ache, he is feeling fine.
We lit our first fire here in Austin tonight. Started with a living room full of smoke, then I managed to unhook the chimney shield. I'm just happy there were no dead squirrels falling down, they would have been BBQ'd.
After that I've been sitting in front of it for hours. Not sure I'll make it up the stairs tonight, way to comfortable on the sofa. :)
Tuesday, November 30, 2010
Monday, November 29, 2010
November 29, 2010 Coming back up again!
WBC is going up... slowly today they were 0.9 compared to 0.5 on Friday.
Everything is going as expected which is good and Adrian is feeling
great. You wouldn't know he was 'sick' unless he told you. Now we are
waiting for the counts to keep on going up until they can harvest his
stem cells. It might be this week or next week. Then he can come home
for a week before he goes back for transplant.
On Saturday I met this man with his daughter in the cafeteria, we
started talking and it shows out they are from Austin and that the
girl's grandmother had just had a transplant, two days earlier!! She
had had an allo transplant (donor) and she was doing great. Keep in
mind she is 65 years old and had been battling leukemia for 3 years.
Originally she had been against transplant but the doctors told her,
her life would be very short if she didn't. She did it and 2 days
later she was up and around in the room. That is pretty awesome!!!
Even the grandkids were allowed in the room as long as they wore
masks, gloves, smock and clean clothes!!
That sounds great to me!!
Adrian is doing as expected, the counts went up and then down and now
slowly up again. It is all good - he is a good patient :)
Sunday, November 28, 2010
Saturday, November 27, 2010
Friday, November 26, 2010
November 26, 2010 - Back in Houston
We had a fantastic Thanksgiving with family and friends. To do a quick
recap over the last few days:
Tuesday we got the all clear to go home until today, Adrian's brother
Oliver was flying in to Houston, so we waited for him to arrive before
driving back together with a full car.
Wednesday, we hung out at home and I coordinated with Adrian's mom
that she and Tommy were going to fly in that night. It was a complete
surprise for the boys! I took the girls to see Tangled and then
went to the airport right afterwards to pick them up.
We cooked up a big Taco feast and had a really nice evening.
Thursday it was Thanksgiving and it was a wonderful day. We did a
joint party with our amazing friends the Petrik family. We had
delicious turkey, stuffing, potatoes, pies, wine and more!! The kids
ended up swapping beds last night. Isac stayed with us and Sienna
stayed at Petrik's.
It was such a nice way to spend Thanksgiving and remember what we
are thankful for in life.
All throughout this, Adrian is feeling great and his WBC was at a
whopping 18 on Tuesday, that is why they said it was ok to go home for
a few days.
This morning, Tommy flew back to Ft. Lauderdale and Oliver drove down
to Houston with Adrian. Adrian had to be back for labs at 9 am to
check his counts. WBC was down at 0.5!!!! That means his immune system
is almost as low as it can go and he is very sensitive to infections.
Before I knew this, I had plans for us all to go out for dinner
tonight and then to the movies.... well... they had to be
cancelled. :) Busy public places are the last places he needs to be
right now.
Funny thing is, even though his immune system is so low, he feels
perfectly normal. I guess that is a danger in itself, it is easy to
forget and go out and do 'normal' stuff.
Oliver hopped on a plane from Houston today and flew back to Miami.
Fabby is here with us in Houston, hanging out for a bit longer. It
made the drive down to Houston super quick, we just sit and chat and
viola' we were here!
As far as how it is going to run from here, this is what I know as of
today. Adrian will stay here 1 or 2 weeks and do labs every or every
other day to see when the counts go up and when they are as high as
they need them to be, collect stem cells. Then he can come home for a
week before transplant.
But no more chemo for 2-3 weeks from now.
He has a canker sore in his mouth, which is a normal side effect from
chemo. He will get a special mouth wash to rinse his mouth with for
that. Apart from the sore, he looks great and feels fine. His chest is
still sore and we remembered having the PICC line in his arm, it was
very annoying too. Every time he wants to shower, he has to cover it
up with saran wrap, has to stay dry - the pad and adhesive sticks to
skin and has made it a little irritated. What scares me with the whole
central line is the infection risk. The last pad they put on was
white, you can't see through it in case of the incision site is red
and infected. But the clear one doesn't breathe... not sure which one
I like.
Trying to get two giggling girls to sleep in the room next door.
Sienna and Olivia is full of it tonight. The feed of each other when
they are like this. Cute.
Tomorrow Adrian is going in for something for the platelets, not sure
what it is.
Good night!!
recap over the last few days:
Tuesday we got the all clear to go home until today, Adrian's brother
Oliver was flying in to Houston, so we waited for him to arrive before
driving back together with a full car.
Wednesday, we hung out at home and I coordinated with Adrian's mom
that she and Tommy were going to fly in that night. It was a complete
surprise for the boys! I took the girls to see Tangled and then
went to the airport right afterwards to pick them up.
We cooked up a big Taco feast and had a really nice evening.
Thursday it was Thanksgiving and it was a wonderful day. We did a
joint party with our amazing friends the Petrik family. We had
delicious turkey, stuffing, potatoes, pies, wine and more!! The kids
ended up swapping beds last night. Isac stayed with us and Sienna
stayed at Petrik's.
It was such a nice way to spend Thanksgiving and remember what we
are thankful for in life.
All throughout this, Adrian is feeling great and his WBC was at a
whopping 18 on Tuesday, that is why they said it was ok to go home for
a few days.
This morning, Tommy flew back to Ft. Lauderdale and Oliver drove down
to Houston with Adrian. Adrian had to be back for labs at 9 am to
check his counts. WBC was down at 0.5!!!! That means his immune system
is almost as low as it can go and he is very sensitive to infections.
Before I knew this, I had plans for us all to go out for dinner
tonight and then to the movies.... well... they had to be
cancelled. :) Busy public places are the last places he needs to be
right now.
Funny thing is, even though his immune system is so low, he feels
perfectly normal. I guess that is a danger in itself, it is easy to
forget and go out and do 'normal' stuff.
Oliver hopped on a plane from Houston today and flew back to Miami.
Fabby is here with us in Houston, hanging out for a bit longer. It
made the drive down to Houston super quick, we just sit and chat and
viola' we were here!
As far as how it is going to run from here, this is what I know as of
today. Adrian will stay here 1 or 2 weeks and do labs every or every
other day to see when the counts go up and when they are as high as
they need them to be, collect stem cells. Then he can come home for a
week before transplant.
But no more chemo for 2-3 weeks from now.
He has a canker sore in his mouth, which is a normal side effect from
chemo. He will get a special mouth wash to rinse his mouth with for
that. Apart from the sore, he looks great and feels fine. His chest is
still sore and we remembered having the PICC line in his arm, it was
very annoying too. Every time he wants to shower, he has to cover it
up with saran wrap, has to stay dry - the pad and adhesive sticks to
skin and has made it a little irritated. What scares me with the whole
central line is the infection risk. The last pad they put on was
white, you can't see through it in case of the incision site is red
and infected. But the clear one doesn't breathe... not sure which one
I like.
Trying to get two giggling girls to sleep in the room next door.
Sienna and Olivia is full of it tonight. The feed of each other when
they are like this. Cute.
Tomorrow Adrian is going in for something for the platelets, not sure
what it is.
Good night!!
Thursday, November 25, 2010
Wednesday, November 24, 2010
Monday, November 22, 2010
Sunday, November 21, 2010
PS
Thank You everyone for your sweet emails, phone calls and messages! It is very touching that we have so many wonderful friends. It means a lot to all of us to know you are thinking of Adrian.
November 21, 2010 Out of Hospital - in to Rotary House
The murphy bed they had was so comfortable - you wouldn't believe it!! I know the nurses came in and out all night long, but they were very far away from where I "was". I noticed the lights go on and off every time but it was just like in a dream, they were all blurry. I was in deep sleep. :)
Adrian ordered breakfast while I got ready to go to my class. I have to attend a class on how to change the cap on the CVC (central line) and how to flush it with heparin when it is not being used.
Since the collection of stem cells is about 15 days away, the CVC will just be there and there is a risk that it will get clogged if not flushed. The cap and dressing has to be changed once a week. Flush is every day.
Basically, it's not anything difficult, you just have to follow some simple steps so that you won't get bacteria or dirt in the CVC. That would be quite dangerous - since it goes through the biggest vein in his body, directly to his heart. If there were germs in there they would go to his heart and you can imagine the rest.
After a video and practise on toy CVC we had to sign a paper and then I could go back to Adrian. Later on a nurse came to give me the 'check'. She would ask me questions and then I would show her how to do it.
Quite funny, half way through she says: "Are you a nurse?" I answered: "Since February, yes" :)
I swear, I could do most stuff the nurses can do there. Maybe I should become a nurse, I would have a head start, that is for sure!
On Monday or Tuesday I have to take a second class and then do the test for that too. It is for dressing change.
What is also new for this time is that I will have to give Adrian the Neupogen shots. In his belly or back of the arm - twice daily. This is the conditioning part of the process. Went down to the pharmacy to pick up prescriptions and all kind of stuff. I walked away with 2 big paper bags full of 'goodies'. The treasure chest is open at MD Anderson's too! You name it - you will get it!
The chemo stopped early this morning and for the rest of the day he has been getting Mesna. It is the stuff that helps protect the bladder, I think. Around 5 pm that one was finished too and we got packed up and moved over to the Rotary House.
Adrian took a shower and ate a little and then hopped in to bed. He seemed a wee bit better after the shower.
Hopefully he will have a great night's sleep tonight. No nurses doing vital signs and blood on him during the night and a bed that is quiet. The hospital beds have that inflation thing in the mattresses. Every time you move, it inflates and rather loud too.
I drove back to Austin after he was all set in Rotary House. Had to go home and get the girls who have been on long sleep overs with dear friends. They all had a ball!!
We are all heading back to Houston tomorrow morning at some point. It will be a nice trip for the girls - planning on taking them to the zoo on Tuesday after Aj's appointment. He will stay and recover and we will be coming and going - checking in and then go explore Houston!!
Fingers crossed, Dr. Alousi will say it is ok for Aj to go home for a few days, Wednesday - Sunday. If not, the girls and I will stay in Houston for the week. The room in Rotary House has a sofa bed in the livingroom where the girls can sleep.
So, this is the 3rd chemo down... only one more to go. I think we will find out tomorrow from Dr. Alousi what it will be. If it is any different than what he just had.
I told Adrian, Christmas will be very special from now on, we will celebrate the birth of Baby Jesus and the re-birth of Adrian James!!! :)
Adrian ordered breakfast while I got ready to go to my class. I have to attend a class on how to change the cap on the CVC (central line) and how to flush it with heparin when it is not being used.
Since the collection of stem cells is about 15 days away, the CVC will just be there and there is a risk that it will get clogged if not flushed. The cap and dressing has to be changed once a week. Flush is every day.
Basically, it's not anything difficult, you just have to follow some simple steps so that you won't get bacteria or dirt in the CVC. That would be quite dangerous - since it goes through the biggest vein in his body, directly to his heart. If there were germs in there they would go to his heart and you can imagine the rest.
After a video and practise on toy CVC we had to sign a paper and then I could go back to Adrian. Later on a nurse came to give me the 'check'. She would ask me questions and then I would show her how to do it.
Quite funny, half way through she says: "Are you a nurse?" I answered: "Since February, yes" :)
I swear, I could do most stuff the nurses can do there. Maybe I should become a nurse, I would have a head start, that is for sure!
On Monday or Tuesday I have to take a second class and then do the test for that too. It is for dressing change.
What is also new for this time is that I will have to give Adrian the Neupogen shots. In his belly or back of the arm - twice daily. This is the conditioning part of the process. Went down to the pharmacy to pick up prescriptions and all kind of stuff. I walked away with 2 big paper bags full of 'goodies'. The treasure chest is open at MD Anderson's too! You name it - you will get it!
The chemo stopped early this morning and for the rest of the day he has been getting Mesna. It is the stuff that helps protect the bladder, I think. Around 5 pm that one was finished too and we got packed up and moved over to the Rotary House.
Adrian took a shower and ate a little and then hopped in to bed. He seemed a wee bit better after the shower.
Hopefully he will have a great night's sleep tonight. No nurses doing vital signs and blood on him during the night and a bed that is quiet. The hospital beds have that inflation thing in the mattresses. Every time you move, it inflates and rather loud too.
I drove back to Austin after he was all set in Rotary House. Had to go home and get the girls who have been on long sleep overs with dear friends. They all had a ball!!
We are all heading back to Houston tomorrow morning at some point. It will be a nice trip for the girls - planning on taking them to the zoo on Tuesday after Aj's appointment. He will stay and recover and we will be coming and going - checking in and then go explore Houston!!
Fingers crossed, Dr. Alousi will say it is ok for Aj to go home for a few days, Wednesday - Sunday. If not, the girls and I will stay in Houston for the week. The room in Rotary House has a sofa bed in the livingroom where the girls can sleep.
So, this is the 3rd chemo down... only one more to go. I think we will find out tomorrow from Dr. Alousi what it will be. If it is any different than what he just had.
I told Adrian, Christmas will be very special from now on, we will celebrate the birth of Baby Jesus and the re-birth of Adrian James!!! :)
November 20, 2010
I am in Houston with Adrian and he is feeling the chemo. Nausea is gone, but he's feeling toxic. It has been chemo for 5 days straight. Finally it will end tomorrow.
Going to sleep soon, it is actually luxury here.. I have a bed! At Seton they only had the recliner chair to sleep in. Here it is a murphy bed, which pulls down from the wall. Very neat.
Tomorrow I have to go and do a class, how to take care of his central line - to be able to flush it and change dressing. After the class the nurse will check me do it and after that Aj can move over to the Rotary House.
We had sushi tonight, since Aj told me the room service stinks here. Beside eating dinner, Aj has been snoozing most of the time.
The girls are having sleep overs with various friends on our street - THANK YOU all for taking them tonight. I will sleep well since I am here. :)
Time for lights out.... Good night everyone
Going to sleep soon, it is actually luxury here.. I have a bed! At Seton they only had the recliner chair to sleep in. Here it is a murphy bed, which pulls down from the wall. Very neat.
Tomorrow I have to go and do a class, how to take care of his central line - to be able to flush it and change dressing. After the class the nurse will check me do it and after that Aj can move over to the Rotary House.
We had sushi tonight, since Aj told me the room service stinks here. Beside eating dinner, Aj has been snoozing most of the time.
The girls are having sleep overs with various friends on our street - THANK YOU all for taking them tonight. I will sleep well since I am here. :)
Time for lights out.... Good night everyone
Friday, November 19, 2010
November 19, 2010 Port Removal
This morning they took him to have the 'old' port removed. Now he 'only' has the central line.
The pain from the central line eased up and he didn't have to take pain medication. The one that made him vomit is called Dilaudid. The nurse has put it in his chart - reaction to it, so he won't get it again.
He is tired and feels pretty beat up from the chemo. They said it will keep on pumping until Saturday/Sunday.
The good news are, he might be able to come home Wednesday-Sunday this week. He will find out within the next few days. It feels like he has been gone a long time already, even if it has only been a few days. Even if I can't do a whole lot to help him through the chemo, I like to be there anyway.
The plan for him now is:
Chemo at MD Anderson, then released and he will move to the Rotary House - hotel/suites next to MD A. It is connected via Skywalk. He will have a suite there with a little kitchen and bedroom there. Easy access to go to appointments and so on. Plus they they have a couple of restaurants, coffee shop, quiet rooms and places where you can sit in and outside. As good as it is going to get in a hospital environment.
After chemo Aj will get neupogen shots to boost the cells to grow. - A lot of it. This is the Mobilizing part of transplant.
Around day 21 after chemo, they will harvest/collect the stem cells and freeze them in IV bags. The reason he has to stay in Houston up until this day is because they have to check him daily to see what his counts are. There is a small window when the counts are really high and collection will be best.
Then he can go home for 2-6 days before the transplant. This is probably mid December some time. After that, Adrian will be readmitted to MD Anderson - this time to get the high dose chemo, which will make room for new stem cells and bring his immune system down to 0.
I think they said this chemo will be about 5-7 days - not sure in what shape or form it comes or what drugs.
THEN - it's time for D-DAY! Transplant - Day 0!! The rebirth/reboot of Adrian's immune system/body. Celebrating Christmas from now on will be a very special celebration!!!
This is very exciting as much as it makes my stomach turn. I can't wait for him to start up with new healthy cells and be able to concentrate on full recovery and not have to face more chemo - EVER!
Aj will stay in the hospital roughly 2 weeks after the transplant, again it has to do with counts. The counts have to be at a certain level before they can release him and be sure he doesn't have any infections. That is one of the risks, infections. Have to make sure that nobody around him has even as little as sniffles.
After 2 weeks/when counts are up - he can move back in to the Rotary house and stay there for roughly 2 weeks as an out patient. Hopefully after that he can return to Austin!!
That is the plan as I know it right now. I will keep you updated as we go along and give you more details. Now it's time for me to go to bed!!!
The pain from the central line eased up and he didn't have to take pain medication. The one that made him vomit is called Dilaudid. The nurse has put it in his chart - reaction to it, so he won't get it again.
He is tired and feels pretty beat up from the chemo. They said it will keep on pumping until Saturday/Sunday.
The good news are, he might be able to come home Wednesday-Sunday this week. He will find out within the next few days. It feels like he has been gone a long time already, even if it has only been a few days. Even if I can't do a whole lot to help him through the chemo, I like to be there anyway.
The plan for him now is:
Chemo at MD Anderson, then released and he will move to the Rotary House - hotel/suites next to MD A. It is connected via Skywalk. He will have a suite there with a little kitchen and bedroom there. Easy access to go to appointments and so on. Plus they they have a couple of restaurants, coffee shop, quiet rooms and places where you can sit in and outside. As good as it is going to get in a hospital environment.
After chemo Aj will get neupogen shots to boost the cells to grow. - A lot of it. This is the Mobilizing part of transplant.
Around day 21 after chemo, they will harvest/collect the stem cells and freeze them in IV bags. The reason he has to stay in Houston up until this day is because they have to check him daily to see what his counts are. There is a small window when the counts are really high and collection will be best.
Then he can go home for 2-6 days before the transplant. This is probably mid December some time. After that, Adrian will be readmitted to MD Anderson - this time to get the high dose chemo, which will make room for new stem cells and bring his immune system down to 0.
I think they said this chemo will be about 5-7 days - not sure in what shape or form it comes or what drugs.
THEN - it's time for D-DAY! Transplant - Day 0!! The rebirth/reboot of Adrian's immune system/body. Celebrating Christmas from now on will be a very special celebration!!!
This is very exciting as much as it makes my stomach turn. I can't wait for him to start up with new healthy cells and be able to concentrate on full recovery and not have to face more chemo - EVER!
Aj will stay in the hospital roughly 2 weeks after the transplant, again it has to do with counts. The counts have to be at a certain level before they can release him and be sure he doesn't have any infections. That is one of the risks, infections. Have to make sure that nobody around him has even as little as sniffles.
After 2 weeks/when counts are up - he can move back in to the Rotary house and stay there for roughly 2 weeks as an out patient. Hopefully after that he can return to Austin!!
That is the plan as I know it right now. I will keep you updated as we go along and give you more details. Now it's time for me to go to bed!!!
Thursday, November 18, 2010
November 18, 2010 In Houston
I had written down all the info I was going to share tonight, then my battery died and when I switched it back on... I'd lost what I wrote...
Now, I am too tired to re write everything - will do so tomorrow.
What I will share is - I just got off Skype with Adrian and he is doing ok. He had a bad reaction to one of the pain medications he had been given. It made him throw up. It is the same medication he got when he was so sick at Dr. H's office. The nurse in Houston is going to make a note of it, so he won't have it again.
He is also in pain from the central line they put in today ( it was planned for next week - but they changed it) - therefor the medication and then he started throwing up.
He was sitting up eating just now and about to watch some funny HBO show.
I will write more tomorrow about the plan and what he is doing.
Here is some info about Central line and mobilizing (he is doing chemo+mobilizing right now)
Now, I am too tired to re write everything - will do so tomorrow.
What I will share is - I just got off Skype with Adrian and he is doing ok. He had a bad reaction to one of the pain medications he had been given. It made him throw up. It is the same medication he got when he was so sick at Dr. H's office. The nurse in Houston is going to make a note of it, so he won't have it again.
He is also in pain from the central line they put in today ( it was planned for next week - but they changed it) - therefor the medication and then he started throwing up.
He was sitting up eating just now and about to watch some funny HBO show.
I will write more tomorrow about the plan and what he is doing.
Here is some info about Central line and mobilizing (he is doing chemo+mobilizing right now)
Central venous catheter (CVC) placement | ||||||||||
| A central venous catheter (CVC) is a flexible, hollow tube made of soft silicone. A surgeon or radiologist places the catheter through the skin and into a vein in the chest or neck. The tip of the catheter is threaded through the vein to a point just above the heart. There will be a catheter exit site on your chest, and several inches of the catheter will remain outside of the body. The external portion of the catheter will have two or three ports, or lumens, that have special connectors on the ends that can be used to draw blood for lab tests and to administer chemotherapy, medications, IV fluids and blood products.
| ||||||||||
Wednesday, November 17, 2010
Monday, November 15, 2010
November 15, 2010
We got a little bit more info today. We will go down to Houston on Wednesday, Adrian will get the I & the E from ICE and then do the 'conditioning' in preparation for collecting stem cells. The conditioning is to free the stem cells so they are easier to collect. (something like that)
After chemo he will go on check ups to see how the levels are coming along. They will give big doses of Neupogen to boost the white blood cell count. (it is the same as Neulasta). When levels are high enough they will collect the stem cells and I am not sure how much and how long it takes. Because he is young and strong it should be easy.
When that is done, he will have a week or so, then head to Houston for transplant. Very very rough estimate is that it will happen right around Christmas. Probably just before, if everything runs as planned right now. Things all depend on when they collect the stem cells.
I really liked what our neighbor told me tonight, "Get it started and get it over with quicker". It is very true, lets re-boot and then start the recovery. The day they will do the transplant will count as day 1, the next day as 2 and so on.
The reason they give another dose of chemo before collecting stem cells even though the biopsy came back negative, is because they want to make sure there are no hidden cells anywhere. Adrian will get one more dose of chemo right before the transplant, from what I read this is to make room for the new stem cells to come in and grow. Also to bring his 'sick' immune system back to square one and re-boot his body.
Normally when he has chemo and his immune system is low, he doesn't feel that bad. Weird how it works. His immune system is low and that is when he is on the 'mend' from chemo and starting to feel pretty good again.
Now, if this is the case when he has the transplant, I have no idea. We will soon find out though. I have read about people who have had good and people who have had bad experiences. Even the ones that had bad experiences say, they would do it again in a heartbeat - if they had to.
My Mac battery is about to die and so is my internal one ... time to go and recharge with some sleep!
Ciao!!
After chemo he will go on check ups to see how the levels are coming along. They will give big doses of Neupogen to boost the white blood cell count. (it is the same as Neulasta). When levels are high enough they will collect the stem cells and I am not sure how much and how long it takes. Because he is young and strong it should be easy.
When that is done, he will have a week or so, then head to Houston for transplant. Very very rough estimate is that it will happen right around Christmas. Probably just before, if everything runs as planned right now. Things all depend on when they collect the stem cells.
I really liked what our neighbor told me tonight, "Get it started and get it over with quicker". It is very true, lets re-boot and then start the recovery. The day they will do the transplant will count as day 1, the next day as 2 and so on.
The reason they give another dose of chemo before collecting stem cells even though the biopsy came back negative, is because they want to make sure there are no hidden cells anywhere. Adrian will get one more dose of chemo right before the transplant, from what I read this is to make room for the new stem cells to come in and grow. Also to bring his 'sick' immune system back to square one and re-boot his body.
Normally when he has chemo and his immune system is low, he doesn't feel that bad. Weird how it works. His immune system is low and that is when he is on the 'mend' from chemo and starting to feel pretty good again.
Now, if this is the case when he has the transplant, I have no idea. We will soon find out though. I have read about people who have had good and people who have had bad experiences. Even the ones that had bad experiences say, they would do it again in a heartbeat - if they had to.
My Mac battery is about to die and so is my internal one ... time to go and recharge with some sleep!
Ciao!!
Saturday, November 13, 2010
Friday, November 12, 2010
Thursday, November 11, 2010
November 11, 2010 HOOK EM' HORNS!!!!
Finally some good news, first about the two donors yesterday and now - AUTO transplant today!! YEAHH!!!
Hook em' horns!!
Amira called this afternoon and she seemed a little confused as of what is going on. She was asking if we had spoken to Dr. Alousi because she had received an email from him on how to proceed.
She read it to me and it said, proceed with Auto transplant, I asked her if it meant the bone marrow was negative and she said yes. But kind of just like, aha it is...
I told her I've been waiting for that result since Friday last week!! Not sure she knows what it is like to be on the other end waiting for 'the' phone call.
Anyway, I really don't care, the bone marrow is negative - that is all that matters!!!!
We will go to Houston next week and Aj will get the next cycle of ICE there as well as conditioning afterwards. The conditioning is to free the stem cells in the body so they can be collected. Amira told me the transplant team will call us and give all the information as of when and where everything will happen.
Dr. Fayad orders the chemo and after that Transplant department takes over.
You have no idea what a relief this is, that Adrian doesn't have to take the risk and do transplant with a donor. Plus he won't have to spend 4 months in Houston. It is HUGE!
I'm so happy!!!
The "only" risk with this transplant - is the cancer could come back. He has a 50/50 shot. Those are pretty darn good odds in my eyes!!
Positive energy and thoughts everyone!!
We had Taco night with our lovely neighbors Petriks tonight. We celebrated Auto transplant and Kelli's birthday which was yesterday. Kelly brought a bottle of sparkly which we will open up this weekend I think! Celebrate every mile stone!! Thank you Petriks!!
I am going to bed to have a really good night's sleep. I am sure there are a few more that are going to sleep well after these phenomenal news!!
Ciao!
Hook em' horns!!
Amira called this afternoon and she seemed a little confused as of what is going on. She was asking if we had spoken to Dr. Alousi because she had received an email from him on how to proceed.
She read it to me and it said, proceed with Auto transplant, I asked her if it meant the bone marrow was negative and she said yes. But kind of just like, aha it is...
I told her I've been waiting for that result since Friday last week!! Not sure she knows what it is like to be on the other end waiting for 'the' phone call.
Anyway, I really don't care, the bone marrow is negative - that is all that matters!!!!
We will go to Houston next week and Aj will get the next cycle of ICE there as well as conditioning afterwards. The conditioning is to free the stem cells in the body so they can be collected. Amira told me the transplant team will call us and give all the information as of when and where everything will happen.
Dr. Fayad orders the chemo and after that Transplant department takes over.
You have no idea what a relief this is, that Adrian doesn't have to take the risk and do transplant with a donor. Plus he won't have to spend 4 months in Houston. It is HUGE!
I'm so happy!!!
The "only" risk with this transplant - is the cancer could come back. He has a 50/50 shot. Those are pretty darn good odds in my eyes!!
Positive energy and thoughts everyone!!
We had Taco night with our lovely neighbors Petriks tonight. We celebrated Auto transplant and Kelli's birthday which was yesterday. Kelly brought a bottle of sparkly which we will open up this weekend I think! Celebrate every mile stone!! Thank you Petriks!!
I am going to bed to have a really good night's sleep. I am sure there are a few more that are going to sleep well after these phenomenal news!!
Ciao!
News
The bone marrow is negative !!!!!!!!!!!!!!!!!!! Yeahhhhhhhhhhhhhhh!!!!!!!!!!
Auto transplant it is!!!!!!!!!!!!!!!!!!!!! Woohoo!!!!
Catia
Wednesday, November 10, 2010
October 10, 2010
At last we had some news... Just hoping that we won't need the donors at all. It is just nice to know that there are two donors who are a perfect match.
Now, we continue the wait for results of bone marrow biopsy! No word from Dr. Fayad as of yet. I found out from Michelle that Dr. Alousi is out this week. She was going to email him and tell him about the donors and ask how he wants to proceed. Michelle said she will call me as soon as she has any info.
We cleaned out the garage out yesterday, or my dad did :). I looked at Sienna's bike with the training wheels and thought, I'll be darned, she is going to learn.
I took off the training wheels and ran behind the bike holding on to the saddle. Up and down the street. Back and forth.
Today after school, she went and got the bike out, I lowered the saddle enough for her to put both feet down and off she went. After a couple of minutes she was riding up and down like a pro!!!!! Never thought it would be that easy to teach her!
Now, we continue the wait for results of bone marrow biopsy! No word from Dr. Fayad as of yet. I found out from Michelle that Dr. Alousi is out this week. She was going to email him and tell him about the donors and ask how he wants to proceed. Michelle said she will call me as soon as she has any info.
We cleaned out the garage out yesterday, or my dad did :). I looked at Sienna's bike with the training wheels and thought, I'll be darned, she is going to learn.
I took off the training wheels and ran behind the bike holding on to the saddle. Up and down the street. Back and forth.
Today after school, she went and got the bike out, I lowered the saddle enough for her to put both feet down and off she went. After a couple of minutes she was riding up and down like a pro!!!!! Never thought it would be that easy to teach her!
News!
I just heard from Michelle, Dr. Alousi's coordinator. Today, they confirmed 2 PERFECT matches for Adrian !!!!!!!!!!!!!!
Not one, but TWO and they are both perfect!!!!! 10/10!!!!!!!!!
Catia James
Tuesday, November 9, 2010
Monday, November 8, 2010
November 8, 2010 No news
We haven't heard anything from MD Anderson yet. I emailed them and asked about the biopsy and the pathology people aren't done yet. Same for the donor search, I have left them a message to see if they have found someone.
I read the report on the My MD Anderson page yesterday. It is a personal page that MD A uses to communicate with patients and other doctors. The report I read was Dr. Alousi's from last week and it did say that they had found a potential donor. It made me very curios to find out about it when I read it.
Hopefully tomorrow will bring some news of some kind about transplant and when next chemo will be.
Mom & Dad flew in last night, I kept them waiting for an extra 20 minutes when they arrived. I was waiting and waiting, laid down in bed to watch TV and fell asleep. I woke up at 11.05 PM, exactly when they were supposed to land. Drove to the airport in PJ and robe as fast as I dared to drive, figured it wouldn't have been a pretty sight for a policeman if he had to stop me. Got to the airport and found out they had landed 30 min early!!!
It is all good though, dad was up at 6 am ready to make Mannagrynsgrot (Swedish Porridge) for the girls. It has become a tradition now. They bring 10 packets of mannagryn and dad makes it every morning.
Good night...
I read the report on the My MD Anderson page yesterday. It is a personal page that MD A uses to communicate with patients and other doctors. The report I read was Dr. Alousi's from last week and it did say that they had found a potential donor. It made me very curios to find out about it when I read it.
Hopefully tomorrow will bring some news of some kind about transplant and when next chemo will be.
Mom & Dad flew in last night, I kept them waiting for an extra 20 minutes when they arrived. I was waiting and waiting, laid down in bed to watch TV and fell asleep. I woke up at 11.05 PM, exactly when they were supposed to land. Drove to the airport in PJ and robe as fast as I dared to drive, figured it wouldn't have been a pretty sight for a policeman if he had to stop me. Got to the airport and found out they had landed 30 min early!!!
It is all good though, dad was up at 6 am ready to make Mannagrynsgrot (Swedish Porridge) for the girls. It has become a tradition now. They bring 10 packets of mannagryn and dad makes it every morning.
Good night...
Sunday, November 7, 2010
Saturday, November 6, 2010
October 6, 2010 Cooooooold in Austin!!
Didn't really see it coming but it got cold this week! The week has flown by, I think because Annelie and Emma has been around. Tomorrow night my parents fly in from Sweden!! YEAY!! The are going to celebrate dad's birthday in Hawaii. :)
We haven't heard anything yet from MD Anderson. It will most likely be on Monday or latest Tuesday, when we meet with Dr. Fayad. I think we will find out when the next chemo is due as well.
I will call on Monday to see how the bone marrow donor search is going. They said it takes about 10 days from when they do the blood test to find out if they are a match or not. I would think the first 5 people they tested are done by now.
Other than that Adrian is feeling great, looking great! His head is really shiny, he joked that he got it waxed. But it looks good though.
I looked at the statistics of the blog tonight and look, someone in India is reading it! Who is that??? A native living there or someone visiting? I am just really curious, I don't know anyone who is traveling there right now. Who are you :) :) ??
Also Germany and Netherlands!? Could be someone traveling of course, never know.
Oh, I went to the farmers market this morning. I have watched the movie Food Inc. and it made me never want to eat corn fed cows or chicken again. If you haven't seen it, do it and you will go to farmers market too.
I got grass fed beef from this lady who has a farm just outside Austin yesterday. Today I got eggs, baby kale, milk and chicken. (Kelli, I have chicken and beef in the freezer for you!!) Will let you all know if there is any difference in taste or quality.
Our farmers markets here in Austin are really good, also we are blessed with Whole Foods where we can get pretty much everything organic. I like when we can honor local farmers, to buy their stuff.
I am off to watch 'Girl who played with fire' - the second movie of the Swedish Millenium Triology by Stieg Larsen.
Ciao!
We haven't heard anything yet from MD Anderson. It will most likely be on Monday or latest Tuesday, when we meet with Dr. Fayad. I think we will find out when the next chemo is due as well.
I will call on Monday to see how the bone marrow donor search is going. They said it takes about 10 days from when they do the blood test to find out if they are a match or not. I would think the first 5 people they tested are done by now.
Other than that Adrian is feeling great, looking great! His head is really shiny, he joked that he got it waxed. But it looks good though.
I looked at the statistics of the blog tonight and look, someone in India is reading it! Who is that??? A native living there or someone visiting? I am just really curious, I don't know anyone who is traveling there right now. Who are you :) :) ??
Also Germany and Netherlands!? Could be someone traveling of course, never know.
|
Oh, I went to the farmers market this morning. I have watched the movie Food Inc. and it made me never want to eat corn fed cows or chicken again. If you haven't seen it, do it and you will go to farmers market too.
I got grass fed beef from this lady who has a farm just outside Austin yesterday. Today I got eggs, baby kale, milk and chicken. (Kelli, I have chicken and beef in the freezer for you!!) Will let you all know if there is any difference in taste or quality.
Our farmers markets here in Austin are really good, also we are blessed with Whole Foods where we can get pretty much everything organic. I like when we can honor local farmers, to buy their stuff.
I am off to watch 'Girl who played with fire' - the second movie of the Swedish Millenium Triology by Stieg Larsen.
Ciao!
Wednesday, November 3, 2010
Nov. 3, 2010 Back from Houston
Adrian is back from Houston no wiser than when he left. He did the bone marrow biopsy yesterday and met with Dr. Alousi today.
Of course Dr. A said that he has to see the results of the biopsy before he can proceed... GWAHHHH!!! I only emailed his nurses 3 times last week, asking if we shouldn't wait for the biopsy results.
Oh well....
We will go to see Dr. Fayad next week and he will be able to read the slides from biopsy. Dr. A told Adrian today, it is up to the results of the biopsy as of which transplant he will need.
If its clean - auto if not - allo. Clean meaning no cancer at all in his bone marrow.
Keep your fingers crossed!!!!!!!
Of course Dr. A said that he has to see the results of the biopsy before he can proceed... GWAHHHH!!! I only emailed his nurses 3 times last week, asking if we shouldn't wait for the biopsy results.
Oh well....
We will go to see Dr. Fayad next week and he will be able to read the slides from biopsy. Dr. A told Adrian today, it is up to the results of the biopsy as of which transplant he will need.
If its clean - auto if not - allo. Clean meaning no cancer at all in his bone marrow.
Keep your fingers crossed!!!!!!!
November 3, 2010 Nala - Article
This is a really sad article that I came across yesterday. It is about a girl who passed away last week. But I think it really speaks for itself. It is so easy to become a bone marrow donor, 15 minutes of your time to register and then 2 min to do the swabs. You could save a life!
Nala - article
If you want to be a donor, go to this website and register!
Bone Marrow Donor
Nala - article
If you want to be a donor, go to this website and register!
Bone Marrow Donor
Monday, November 1, 2010
November 1st. 2010
We had the best Halloween ever!!!
This is what Chloe told me on the way to school this morning:
Mamma, can we never ever ever leave this street? It is the best street in the whole world!
It was really sweet, the whole street met down on one cul de sac and there was a potluck party. Everyone were there, then the kids went on a hay ride to the end of the street and started trick or treating. (Olivia says prick or preating)
At the end of the street they had a margarita machine for the grown ups and the kids ate their candy. It was a great night!
Adrian drove down to Houston this morning, he had business meeting all day today. Tomorrow he will go and do the bone marrow biopsy and on Wednesday meet with Dr. Alousi. He doesn't have to do the CT and PET scan again, we managed to get the CD and the written report and sent it down there. They came back clear after the first dose of ICE so there is no reason to do them again.
This is what Chloe told me on the way to school this morning:
Mamma, can we never ever ever leave this street? It is the best street in the whole world!
It was really sweet, the whole street met down on one cul de sac and there was a potluck party. Everyone were there, then the kids went on a hay ride to the end of the street and started trick or treating. (Olivia says prick or preating)
At the end of the street they had a margarita machine for the grown ups and the kids ate their candy. It was a great night!
Adrian drove down to Houston this morning, he had business meeting all day today. Tomorrow he will go and do the bone marrow biopsy and on Wednesday meet with Dr. Alousi. He doesn't have to do the CT and PET scan again, we managed to get the CD and the written report and sent it down there. They came back clear after the first dose of ICE so there is no reason to do them again.
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