Friday, December 31, 2010
Day 10/11, December 30/31, 2010 NEW YEARS EVE!
Let's ring in the New Year tonight and all wish for a Happy, Healthy and Wonderful 2011 !!!
The counts did go up 0.4 in two days which is another little step in the right direction. We went to see him tonight and the girls were hungry so I went to the cafeteria to get them something. When I came back with hamburgers, Adrian was looking at them like a puppy. :)
Sienna shared some of hers and when Adrian took a bite and went to swallow, I could see the veins on his neck and head. It was so painful for him to swallow. Sienna got her burger back.... at least she was happy. :)
He says that as soon as he eats something cold it is easier, he has yoghurt, rice crispies (soaked in milk) ice cream and popsicles on the menu.
I remembered to look on the bags tonight and it is Pepto -
The counts did go up 0.4 in two days which is another little step in the right direction. We went to see him tonight and the girls were hungry so I went to the cafeteria to get them something. When I came back with hamburgers, Adrian was looking at them like a puppy. :)
Sienna shared some of hers and when Adrian took a bite and went to swallow, I could see the veins on his neck and head. It was so painful for him to swallow. Sienna got her burger back.... at least she was happy. :)
He says that as soon as he eats something cold it is easier, he has yoghurt, rice crispies (soaked in milk) ice cream and popsicles on the menu.
I remembered to look on the bags tonight and it is Pepto -
He doesn't have any of these symtoms, so the pepto must be working.
The lady we met in the day room a few days ago, told us about her son who had leukemia. When he did a transplant before, his worst side effects were blisters on hands and feet. The whole palms of his hands and soles on his feet were like big blisters. She said they want the patients to walk around as much as possible as it speeds up recovery. He would walk, but it was so painful. Plus they don't want any infections and when he did walk the blisters would pop and it was a big infection risk. What ever he did, it wasn't right. What a situation to be in.
The nurse also said, the reason for so many bags on the IV tree (as I call the battery/stand) is because they have switched all his medicines to IV, since he is having the sores in the throat.
According to her, the amount of bags Aj has is pretty normal, not that many. Some people have double or even triple!!! - That is sick!!!!
What we are waiting for now is the ANC - Absolute Neutrophil Count to go up. Right now the counts are too low to even register to calculate the ANC. When Adrian's ANC is 1.5, he is out of there.
Every day in the hospital is a day closer to coming home! :) :)
Here is an explanation about ANC:
Absolute neutrophil count: The real number of white blood cells (WBCs) that areneutrophils. The absolute neutrophil count is commonly called the ANC.
The ANC is not measured directly. It is derived by multiplying the WBC count times the percent of neutrophils in the differential WBC count. The percent of neutrophils consists of the segmented (fully mature) neutrophils) + the bands (almost mature neutrophils). The normal range for the ANC = 1.5 to 8.0 (1,500 to 8,000/mm3).
Sample calculation of the ANC:
WBC count: 6,000 cells/mm3 of blood
Segs: 30% of the WBCs
Bands: 3% of the WBCs
Neutrophils (segs + bands): 33% of the WBCs
ANC: 33% X 6,000 = 2,000/mm3 ANC of 2,000/mm3, by convention = 2.0 Normal range: 1.5 to 8.0 (1,500 to 8,000/mm3)
Interpretation: Normal
WBC count: 6,000 cells/mm3 of blood
Segs: 30% of the WBCs
Bands: 3% of the WBCs
Neutrophils (segs + bands): 33% of the WBCs
ANC: 33% X 6,000 = 2,000/mm3 ANC of 2,000/mm3, by convention = 2.0 Normal range: 1.5 to 8.0 (1,500 to 8,000/mm3)
Interpretation: Normal
Neutrophils are key components in the system of defense against infection. An absence or scarcity of neutrophils (a condition called neutropenia) makes a person vulnerable toinfection. After chemotherapy, radiation, or a blood or marrow transplant, the ANC is usually depressed and then slowly rises, reflecting the fact that the bone marrow is recovering and new blood cells are beginning to grow and mature.
In practical clinical terms, a normal ANC is 1.5 or higher; a "safe" ANC is 500-1500; a low ANC is less than 500. A safe ANC means that the patient's activities do not need to be restricted (on the basis of the ANC).
Olivia fell asleep with her headband
Thursday, December 30, 2010
Day 10, 30 December, 2010
WBC 0.5 !!!!!! Slowly but surely..... :) :) :) :)
Last night was the worst night to date, because of his throat. He wasn't able to sleep much at all.
Wednesday, December 29, 2010
Day 9, 29 December 2010
Not a whole lot of changes from yesterday. The WBC is still 0.1. The doctor said it can take a few days for it to go up from there though. Wait, wait, wait....
His throat is still the same. The only thing that doesn't hurt too bad to swallow is ice cream. It is just brutal... this whole procedure.
Took the kids to the Children's museum today. It was like all of the other places... packed. But the girls just loooove it. So much so, that they want to go back tomorrow!
The game is over and my dear neighbors are coming back one by one. I am going to take an ambien and hopefully not hear a word. Self-medicated on wine last night, but it takes too long before it starts working. :)
Ciao!
His throat is still the same. The only thing that doesn't hurt too bad to swallow is ice cream. It is just brutal... this whole procedure.
Took the kids to the Children's museum today. It was like all of the other places... packed. But the girls just loooove it. So much so, that they want to go back tomorrow!
The game is over and my dear neighbors are coming back one by one. I am going to take an ambien and hopefully not hear a word. Self-medicated on wine last night, but it takes too long before it starts working. :)
Ciao!
Day 8, December 28, 2010
Quick recap - Adrian felt really well last week day 0 and 1, then it kind of just went downhill from there. Sores in his throat, very itchy rash on his head he became more tired and just felt out of it. His WBC has been down to 0 for a few days and today it finally took a turn and went up to 0.1.
Now, we know this is minute, but in cases like this - these little numbers makes a big difference.
I am hoping so badly, this is the turning point and he will start feeling better. Plus his body will grow some immune system to heal these sores in his throat so he can eat and get more energy.
His diet is pretty much, ice cream, soup, jello and spaghetti.
We all drove down yesterday, he had had a fever for a couple of days and they took him for a chest x-ray. The x-ray would show if he had an infection or not. Results came in negative today. Hurray!!!
The girls were so excited to see him too. I heard them in the car yesterday, they were going to try to seek out which doctor was the disguised one! How cute is that. They knew he wore a mask and he was on Adrian's floor... Poor nurses, probably thought the girls were weird the way they stared at them. :) - remember the letter Santa wrote, his elves had followed the girls here in disguise....
I had to put masks and gloves on all of them before they could enter the room and they were really happy about that. So cute, I lined them up and 'dressed' them one by one. Then my turn and I turn around and the whole nurse station are staring at the girls and telling them how adorable they are. They did look cute, masks covering their whole faces except from eyes and gloves as big as toilet seats on their hands.
We hung out with Adrian for a couple of hours and he actually had energy to walk out to the day room and watch a little bit of football with us. Seems like he has been in here forever. Can't imagine what it feels like for him.
We met a lady who's son got leukemia when he was 28 years old, 4 years ago. He has had a few transplants and found out about his last relapse the day after his twins were born. Had to go to Houston almost right away to start treatment for the transplant he had last week.
Makes me sick to my stomach hearing stories and it is just so unfair.... CANCER SUCKS! (just like it said on the girl's badge in the cafeteria)
I went by to see Aj this morning and he looked better than yesterday. The rash on his head is gone, so is the fever. But throat sores still there. Plus the WBC went up.
He is a little anemic so he got a bag of blood. The nurse told me they strip the blood that he got from components that could cause a reaction in his body. She told me the name of it but I forgot.
Also, I have never seen as many bags on his IV stand as this morning... crazy. He didn't even have this many bags during chemo! Good thing is, it is not poison in the bags. They are: IV saline fluids and all different types of antibiotics and he got benadryl to for itching.
After the visit, I took the girls, Fabby, Tommy and Alcerita (Adrian's cousin) to NASA Space Center. All I have to say is WOW! What a place!!! It was packed with people, they reckon about 7000 visitors today, we all showered and changed before we went to see Adrian tonight. :)
We all had a blast there!
Last.... I get back and put the girls to bed and I hear we have got neighbors in the hotel. Who are rather loud... They are college kids, I found out there is a game tomorrow night. Nice one!!
After a while and the girls not going to sleep, I called downstairs and let the reception know. I don't like complaining about things like this at all. Had it been Vegas - it is expected, Mariott Medical Hotel... ehhh no.
After another hour of yelling, cheering and a few of them falling on the wall, I called down and asked if they had called them and said I can change room tomorrow to avoid this tomorrow. The girl said she would send security up, I said NO! don't do that.
The girls said she would, there are too many medical guests here and it is not a 'party' hotel.
5 minutes later I hear the security knock on the door, a guy opens and security says: She has three little kids and she is complaining! (not exactly hard to spot the guest with three little kids in this hotel)
OMG!!!!! I guess that was my punishment straight from clear blue sky! What ever happened to: "SOMEONE is complaining about the noise.
Wouldn't surprise me if security is standing there pointing at my door as well (like to tell them, it is her, your neighbor on your right)!!!!
I'll be waking up with rotten tomatoes smeared on my door and glue on the door handle.
I love this hotel, but security wasn't exactly 'Smooth Operator". :) :) :)
But hat of to the college kids, they moved their party to another room. I can't hear a thing, hope they didn't move to a room next to Tommy, Fabby and Alcerita. :)
Gosh I feel old!! :) :) :)
15 min later...
Party is back on next door. It is going to be a looooooong night.....
Now, we know this is minute, but in cases like this - these little numbers makes a big difference.
I am hoping so badly, this is the turning point and he will start feeling better. Plus his body will grow some immune system to heal these sores in his throat so he can eat and get more energy.
His diet is pretty much, ice cream, soup, jello and spaghetti.
We all drove down yesterday, he had had a fever for a couple of days and they took him for a chest x-ray. The x-ray would show if he had an infection or not. Results came in negative today. Hurray!!!
The girls were so excited to see him too. I heard them in the car yesterday, they were going to try to seek out which doctor was the disguised one! How cute is that. They knew he wore a mask and he was on Adrian's floor... Poor nurses, probably thought the girls were weird the way they stared at them. :) - remember the letter Santa wrote, his elves had followed the girls here in disguise....
I had to put masks and gloves on all of them before they could enter the room and they were really happy about that. So cute, I lined them up and 'dressed' them one by one. Then my turn and I turn around and the whole nurse station are staring at the girls and telling them how adorable they are. They did look cute, masks covering their whole faces except from eyes and gloves as big as toilet seats on their hands.
We hung out with Adrian for a couple of hours and he actually had energy to walk out to the day room and watch a little bit of football with us. Seems like he has been in here forever. Can't imagine what it feels like for him.
We met a lady who's son got leukemia when he was 28 years old, 4 years ago. He has had a few transplants and found out about his last relapse the day after his twins were born. Had to go to Houston almost right away to start treatment for the transplant he had last week.
Makes me sick to my stomach hearing stories and it is just so unfair.... CANCER SUCKS! (just like it said on the girl's badge in the cafeteria)
I went by to see Aj this morning and he looked better than yesterday. The rash on his head is gone, so is the fever. But throat sores still there. Plus the WBC went up.
He is a little anemic so he got a bag of blood. The nurse told me they strip the blood that he got from components that could cause a reaction in his body. She told me the name of it but I forgot.
Also, I have never seen as many bags on his IV stand as this morning... crazy. He didn't even have this many bags during chemo! Good thing is, it is not poison in the bags. They are: IV saline fluids and all different types of antibiotics and he got benadryl to for itching.
After the visit, I took the girls, Fabby, Tommy and Alcerita (Adrian's cousin) to NASA Space Center. All I have to say is WOW! What a place!!! It was packed with people, they reckon about 7000 visitors today, we all showered and changed before we went to see Adrian tonight. :)
We all had a blast there!
Last.... I get back and put the girls to bed and I hear we have got neighbors in the hotel. Who are rather loud... They are college kids, I found out there is a game tomorrow night. Nice one!!
After a while and the girls not going to sleep, I called downstairs and let the reception know. I don't like complaining about things like this at all. Had it been Vegas - it is expected, Mariott Medical Hotel... ehhh no.
After another hour of yelling, cheering and a few of them falling on the wall, I called down and asked if they had called them and said I can change room tomorrow to avoid this tomorrow. The girl said she would send security up, I said NO! don't do that.
The girls said she would, there are too many medical guests here and it is not a 'party' hotel.
5 minutes later I hear the security knock on the door, a guy opens and security says: She has three little kids and she is complaining! (not exactly hard to spot the guest with three little kids in this hotel)
OMG!!!!! I guess that was my punishment straight from clear blue sky! What ever happened to: "SOMEONE is complaining about the noise.
Wouldn't surprise me if security is standing there pointing at my door as well (like to tell them, it is her, your neighbor on your right)!!!!
I'll be waking up with rotten tomatoes smeared on my door and glue on the door handle.
I love this hotel, but security wasn't exactly 'Smooth Operator". :) :) :)
But hat of to the college kids, they moved their party to another room. I can't hear a thing, hope they didn't move to a room next to Tommy, Fabby and Alcerita. :)
Gosh I feel old!! :) :) :)
15 min later...
Party is back on next door. It is going to be a looooooong night.....
Tuesday, December 28, 2010
Day 8, December 28, 2010
WBC 0.1 !!! It's going up, any little increase is good.
Fever is gone as well.
Catia
Monday, December 27, 2010
Day 6, December 26, 2010 Almost a week
It has been almost a week since mini birthday! Adrian is not feeling like celebrating anything. Last night was a really rough night and his throat is worse than before. I cringed when he described it to me.
"It is like the sores in my throat are sticking to each other and when I swallow, they rip apart"
Sounds brutal to me. The doctor did tell Adrian it would get worse before it got better, let's hope and pray this is the worst it is going to get.
The WBC is still 0.0 and he did get the Neupogen shot today. Let's hope it does the trick on the WBC too! I've only spoken to him briefly today, it hurts too much when he talks, so we text/SMS instead. What would we do without cell phones in this world!?
We are all packing up tomorrow and heading down to see Adrian. I think I'll keep the kids away from him until the WBC starts going up. Better safe than sorry. They are not so happy about it, but I am able to make it up to them by taking them to a bunch of places. We all got city passes from our amazing friends on our street (THANK YOU!!). We are going to NASA, Kids' museum, aquarium, butterfly exhibit, museums and more. It should be a fun week. !!!
We will see Adrian as much as he has energy for. I will have more info about his recovery for you guys after we get down there!
I appreciate all your emails, cards, calls, checking in on us. It is a rough time for sure. But knowing that Adrian and I have so many wonderful friends and family who cares, warms my heart. Thank you.
I am taking all Christmas cards down for him to see tomorrow. I do apologize for not sending any out this year, on the 23rd - I realized they were still sitting on my desk. I had good intentions, lets leave it at that. :) :)
Ciao!
"It is like the sores in my throat are sticking to each other and when I swallow, they rip apart"
Sounds brutal to me. The doctor did tell Adrian it would get worse before it got better, let's hope and pray this is the worst it is going to get.
The WBC is still 0.0 and he did get the Neupogen shot today. Let's hope it does the trick on the WBC too! I've only spoken to him briefly today, it hurts too much when he talks, so we text/SMS instead. What would we do without cell phones in this world!?
We are all packing up tomorrow and heading down to see Adrian. I think I'll keep the kids away from him until the WBC starts going up. Better safe than sorry. They are not so happy about it, but I am able to make it up to them by taking them to a bunch of places. We all got city passes from our amazing friends on our street (THANK YOU!!). We are going to NASA, Kids' museum, aquarium, butterfly exhibit, museums and more. It should be a fun week. !!!
We will see Adrian as much as he has energy for. I will have more info about his recovery for you guys after we get down there!
I appreciate all your emails, cards, calls, checking in on us. It is a rough time for sure. But knowing that Adrian and I have so many wonderful friends and family who cares, warms my heart. Thank you.
I am taking all Christmas cards down for him to see tomorrow. I do apologize for not sending any out this year, on the 23rd - I realized they were still sitting on my desk. I had good intentions, lets leave it at that. :) :)
Ciao!
Saturday, December 25, 2010
Fwd: Official Announcement from the North Pole: Cloe, Sienna and Olivia have been found!
This is a letter Santa wrote the girls yesterday.
We had a phenomenal evening with him last night. What a blessing he is!!!!!!
I will post some pictures later tomorrow - the kids were in awe!!!
I will post some pictures later tomorrow - the kids were in awe!!!
Official Announcement from the North Pole: Cloe, Sienna and Olivia have been found!
The North Pole Lost Person's Bureau wishes to announce that Cloe, Sienna and Olivia James, who were not to be seen at their home when Elf Sneezy was drawing up Santa's itinerary, are now back at home and will be added to tonight's route.
Chief Elf Grumpy has given an award to Rudolf "Red-Nose" Reindeer, who was so touched by Cloe's gift of reindeer food last year that he has spent the last two nights searching for the girls. He followed their trail down to Houston, where he disguised himself as a reindeer yard decoration and spotted the girls going into the hospital. He followed them into the hospital and, disguised as a doctor in a surgeon's mask, followed them up to a room where he found their father, Adrian, in bed. Rudolf reported back by Reindeer Radio that Adrian was having a tough time. Santa feels very sorry for Adrian, because he remembers that he was ALWAYS good when he was little, so Elf Doc has been put in charge of doing something special for Adrian this year. It will be a surprise.
Rudolf then alerted Dancer and Prancer, who followed the girls and their Mom back to Austin, disguised as truck drivers, to make sure that Santa would have the right address and that the landing lights were properly located. Santa was very happy that such good girls have been found!
The latest update from the North Pole Headquarters is that Elf Airways has finished checking out the sleigh and all is ready for tonight's flight, including the Time Warp Hyper Drive that enables Santa to travel faster than light so that he can get to give presents to ALL the children.
According to Reindeer Radio the latest report is that Santa will arrive at Cloe, Sienna and Olivia's home at 5.45 pm on Christmas Eve.
Ho, Ho and a big Merry Christmas from Santa and all his staff at The North Pole Goodness and Happiness Factory
Santa
Day 5 Christmas day!
Adrian is doing ok. It could for sure be better, but it is as expected. I guess it is as good as it can be.
His WBC is down to 0.0 - which means zero immune system. As horrible as I think it is that he is Houston alone over Christmas, I feel that he is safe from germs there. It is all that matters now, stay healthy and recover.
The doctors told him, his throat is lined with blisters/sores - therefor the extreme pain in it. They have started giving him oxy codone for the pain. Told him to save some for me ;) lol.
He threw up several times yesterday but none today.
He's weight went from 178lbs last week during chemo, then down to 172lbs after lasix. Yesterday it was down to 160lbs, which is his normal weight, so he looks great!!
So good in fact, the lady who brought him food the other day whistled and told him he was fiiiiiine and he could order whatever he liked. :)
Tomorrow they will start Neupogen shots- artificially boost the WBC. We are holding off a couple of days before going to see him. Just want to play it safe.
He chats with us throughout the day, but gets tired really quick. When he comes back home we will start going for walks to get his cardio revved up. Adrian is dying to work out again. Plus we are looking into healthy food options and so on. We truly are blessed to live in Austin, for starters it is close to MD Anderson and second we have exceptional local farmers and organic food.
Catia
His WBC is down to 0.0 - which means zero immune system. As horrible as I think it is that he is Houston alone over Christmas, I feel that he is safe from germs there. It is all that matters now, stay healthy and recover.
The doctors told him, his throat is lined with blisters/sores - therefor the extreme pain in it. They have started giving him oxy codone for the pain. Told him to save some for me ;) lol.
He threw up several times yesterday but none today.
He's weight went from 178lbs last week during chemo, then down to 172lbs after lasix. Yesterday it was down to 160lbs, which is his normal weight, so he looks great!!
So good in fact, the lady who brought him food the other day whistled and told him he was fiiiiiine and he could order whatever he liked. :)
Tomorrow they will start Neupogen shots- artificially boost the WBC. We are holding off a couple of days before going to see him. Just want to play it safe.
He chats with us throughout the day, but gets tired really quick. When he comes back home we will start going for walks to get his cardio revved up. Adrian is dying to work out again. Plus we are looking into healthy food options and so on. We truly are blessed to live in Austin, for starters it is close to MD Anderson and second we have exceptional local farmers and organic food.
Catia
Thursday, December 23, 2010
aj stem cell transplant
Here is a video of the actual transplant. Can't remember if i posted it or not, if I already have - Sorry!!!
Day 3
Adrian is not feeling great today, he has sore throat and has been throwing up.
His skin is itching a little as well.
His skin is itching a little as well.
Nurses gave him something for nausea that knocked him out for a bit.
Catia
Day 3 December 23, 2010
I didn't go over to see Aj last night. He wasn't up for visitors.
They told him it is the chemo that he is feeling. It is reassuring that it is kind of expected, but bummer since he was doing so well the day before.
We are going to have breakfast here in a little bit and then go up and see him for a short while. He woke up feeling better this morning but with a bit of a sore throat. So it will be an in and out visit.
It is his ANC (Absolute, neutrophil count) that has to go up to 1.0 before he can be released from the hospital. They say it can take anything from a week and up. Normally 2 weeks.
They told him it is the chemo that he is feeling. It is reassuring that it is kind of expected, but bummer since he was doing so well the day before.
We are going to have breakfast here in a little bit and then go up and see him for a short while. He woke up feeling better this morning but with a bit of a sore throat. So it will be an in and out visit.
It is his ANC (Absolute, neutrophil count) that has to go up to 1.0 before he can be released from the hospital. They say it can take anything from a week and up. Normally 2 weeks.
Wednesday, December 22, 2010
Day 3 afternoon
After I had breakfast this morning I spoke to Adrian and he was not feeling great. His WBC is 0.4 which they think is his low and it will go up from here.
His stomach has been burning and he got some medicine for it.
We are going to see how he feels later if we will visit or not today.
His stomach has been burning and he got some medicine for it.
We are going to see how he feels later if we will visit or not today.
I'm hoping he just did too much yesterday.
Catia
Day 2 - December 22, 2010
It is Day 3 and I can't tell you how happy I am!
Adrian has been doing above and beyond any expectations. Even the nurses tell him he looks great and they can't believe he doesn't have even one little thing 'wrong'. With wrong I mean, nausea, mouth sore, fatigue. Adrian is doing so well!
A quick recap from this week though... He had chemo from Tuesday - Sunday. High dose was really high dose, it was a lot as of quantity. He said it wasn't the worst he has felt from chemo, but he felt it.
Due to the high dose chemo and a lot of fluids he retained a lot of water. Which he said made him really bloated. He went from around 170lbs to 178lbs on day 2 of chemo.
They gave him a drug called Lasix which helped him get rid or the water and his weight went down again.
He has not experienced andy of the 'normal' side effects at all, like nausea, mouth sores, rash or anything.
On Monday was the new Birthday!!
(I will post a video of the actual transplant when I have finished rebooting my phone : )
They gave him back his 'old' cleaned stem cells. It was 4 bags in total, all of what they took out a while back. Adrian said it was over in 30-45 min, so pretty quick. He also said it was a weird feeling, hard to describe. But it just felt a little strange.
Also what happens when you do a transplant is there is a weird smell. It is from the DMSO - preservatives they use. When we arrived a couple of hours later, it smelled like ketchup in the room. That was from preservatives. It was gone the next day though.
The girls were allowed in the room the very same day as the transplant, they just said put gloves and masks on if you are going to touch anything. Not at all 'in a bubble' like you would imagine.
There are things Aj has to think about now for sure, he can't have fresh veggies, fruit or anything raw like sushi. Everything has to be cooked through. He can't be in crowded public places and should wear a mask when he is out around people. Just as pre cautions not to get sick.
When we came up to the floor, I was so surprised to see him so energetic. We hung out for a couple of hours and then left because he was getting tired.
Yesterday we spend a few hours up in the day room with him in the morning and had lunch, then in the evening we went back and brought a bunch of pizzas and had pizza night. It was really nice. They have the day room (2 of them) which are actually new. They have chairs and tables and a big tv. If it wasn't for those two rooms, I can easily see how you can go stir crazy on the transplant floor.
Before the transplant he was able to walk around the whole hospital, but now he has to stay on the floor.
Adrian has to stay in hospital until his counts go up, can't remember the name of it right now. I'll be back with it.
His WBC right now is 4!!!
It is now 8.15 am and I am waiting for the girls to wake up so we can have breakfast and then head over to say good morning!
Adrian has been doing above and beyond any expectations. Even the nurses tell him he looks great and they can't believe he doesn't have even one little thing 'wrong'. With wrong I mean, nausea, mouth sore, fatigue. Adrian is doing so well!
A quick recap from this week though... He had chemo from Tuesday - Sunday. High dose was really high dose, it was a lot as of quantity. He said it wasn't the worst he has felt from chemo, but he felt it.
Due to the high dose chemo and a lot of fluids he retained a lot of water. Which he said made him really bloated. He went from around 170lbs to 178lbs on day 2 of chemo.
They gave him a drug called Lasix which helped him get rid or the water and his weight went down again.
He has not experienced andy of the 'normal' side effects at all, like nausea, mouth sores, rash or anything.
On Monday was the new Birthday!!
(I will post a video of the actual transplant when I have finished rebooting my phone : )
They gave him back his 'old' cleaned stem cells. It was 4 bags in total, all of what they took out a while back. Adrian said it was over in 30-45 min, so pretty quick. He also said it was a weird feeling, hard to describe. But it just felt a little strange.
Also what happens when you do a transplant is there is a weird smell. It is from the DMSO - preservatives they use. When we arrived a couple of hours later, it smelled like ketchup in the room. That was from preservatives. It was gone the next day though.
The girls were allowed in the room the very same day as the transplant, they just said put gloves and masks on if you are going to touch anything. Not at all 'in a bubble' like you would imagine.
There are things Aj has to think about now for sure, he can't have fresh veggies, fruit or anything raw like sushi. Everything has to be cooked through. He can't be in crowded public places and should wear a mask when he is out around people. Just as pre cautions not to get sick.
When we came up to the floor, I was so surprised to see him so energetic. We hung out for a couple of hours and then left because he was getting tired.
Yesterday we spend a few hours up in the day room with him in the morning and had lunch, then in the evening we went back and brought a bunch of pizzas and had pizza night. It was really nice. They have the day room (2 of them) which are actually new. They have chairs and tables and a big tv. If it wasn't for those two rooms, I can easily see how you can go stir crazy on the transplant floor.
Before the transplant he was able to walk around the whole hospital, but now he has to stay on the floor.
Adrian has to stay in hospital until his counts go up, can't remember the name of it right now. I'll be back with it.
His WBC right now is 4!!!
It is now 8.15 am and I am waiting for the girls to wake up so we can have breakfast and then head over to say good morning!
Tuesday, December 21, 2010
Day 1 !
He's doing way better than expected! I'm so happy!!
Monday, December 20, 2010
Saturday, December 18, 2010
December 18, 2010 Day -2
Adrian is hanging in there like a champ.
There is one more day left of the high dose chemo of the C and E. Then he has the drug tomorrow that he has not had before.
It hasn't wiped him out completely, but he is feeling very toxic like he normally does when he has chemo. 2 more days and that is it!! NO MORE DRUGS!!
We were going to head down this morning but he wants us to wait and come down until Monday, so Monday it is! Chloe asked me the other day if she was healthy. I told her, of course she is and why would she ask. She wanted to make sure she was healthy so she could see Pappa.
So cute...
The weather has been warm and then freezing cold and then warm and freezing cold again. The girls don't really like wearing their winter jackets.. I've told them in the mornings it is very important they wear them so they won't catch a cold. Because then they might not be able to visit Pappa if they get sick. I guess it stuck in Chloe's head... :)
There is one more day left of the high dose chemo of the C and E. Then he has the drug tomorrow that he has not had before.
It hasn't wiped him out completely, but he is feeling very toxic like he normally does when he has chemo. 2 more days and that is it!! NO MORE DRUGS!!
We were going to head down this morning but he wants us to wait and come down until Monday, so Monday it is! Chloe asked me the other day if she was healthy. I told her, of course she is and why would she ask. She wanted to make sure she was healthy so she could see Pappa.
So cute...
The weather has been warm and then freezing cold and then warm and freezing cold again. The girls don't really like wearing their winter jackets.. I've told them in the mornings it is very important they wear them so they won't catch a cold. Because then they might not be able to visit Pappa if they get sick. I guess it stuck in Chloe's head... :)
Wednesday, December 15, 2010
PET scan from last week - all clear!!
The dark spots are from the liquid they inject - NOT cancer!
This is how you want it to look!
December 15, 2010 DAY -5
For those of you who do not know, Santa Claus (Tomten) comes to us every year on the 24th in Sweden. Since we celebrate Swedish Christmas, Santa is coming next Thursday.
Everyone already knows Santa is amazing and kind and funny. Santa who comes to us, is beyond words. He is absolutely phenomenal. Plus, he is pretty updated - he has email!!!
I have secretly been emailing him behind the girls' backs, to know what time he is coming so I can plan dinner accordingly. Well, he wrote me a couple of emails that you can read below (Santa I hope you don't mind me sharing the joy of your emails!!).
He cracks me up. I hope you enjoy them as much as we did. I read them to the girls tonight and that is what Chloe was referring to in the letter she wrote before. Actually, she emailed him from my iPhone. As email address she simply wrote: Santa Claus. - in case you need to know where to send your emails! :)
"Santa's a little blind this year as he just had Grumpy do cataract surgery on
his right eye. He's only got one functioning eye now - so he's having a job
not overshooting roofs and crashing into chimneys: if you hear any loud noises
on Christmas Eve you'll know what it is.
Everyone already knows Santa is amazing and kind and funny. Santa who comes to us, is beyond words. He is absolutely phenomenal. Plus, he is pretty updated - he has email!!!
I have secretly been emailing him behind the girls' backs, to know what time he is coming so I can plan dinner accordingly. Well, he wrote me a couple of emails that you can read below (Santa I hope you don't mind me sharing the joy of your emails!!).
He cracks me up. I hope you enjoy them as much as we did. I read them to the girls tonight and that is what Chloe was referring to in the letter she wrote before. Actually, she emailed him from my iPhone. As email address she simply wrote: Santa Claus. - in case you need to know where to send your emails! :)
"Santa's a little blind this year as he just had Grumpy do cataract surgery on
his right eye. He's only got one functioning eye now - so he's having a job
not overshooting roofs and crashing into chimneys: if you hear any loud noises
on Christmas Eve you'll know what it is.
I already told a couple of the SWEA kids that Rudolph got lost last year and I ended up
going down the chimney of an older couple who weren't at all pleased to have
soot on their carpet and only get rewarded with a little wooden fire engine and
a barbie doll. They REALLY wanted a check for their health insurance. Oops!"
going down the chimney of an older couple who weren't at all pleased to have
soot on their carpet and only get rewarded with a little wooden fire engine and
a barbie doll. They REALLY wanted a check for their health insurance. Oops!"
***
This was Santas reply to when we were chatting about Santa coming by boat:
"The really cool, Austinly weird thing would be Santa zipping down the lake on
skis with Rudolf and the sleigh cruising along just above him. Then Santa hits a
ramp, soars into the air, does a double back-flip, lands on the sleigh, pulls
out a Fender from under his red jacket, and starts playing and singing "Jingle
Bell Rock!" (there's a big amp on the sleigh, plugged into the socket on
Rudolph's nose).
Then Rudolph gives the hook 'em horns sign, loops the loop, does a barrel roll
and drops Santa back off into the lake at just the right spot to cruise up
to your boat dock unaided. Santa whips out a lassoo, drops it over the corner
of the boathouse just in time to stop himself sinking, kicks off the skis, does
a huge leap from the lawn headfirst down the chimney and pops out right in front
of the three little girls with a big fat grin and a loud Yippppeeee!!!
I wish!"
skis with Rudolf and the sleigh cruising along just above him. Then Santa hits a
ramp, soars into the air, does a double back-flip, lands on the sleigh, pulls
out a Fender from under his red jacket, and starts playing and singing "Jingle
Bell Rock!" (there's a big amp on the sleigh, plugged into the socket on
Rudolph's nose).
Then Rudolph gives the hook 'em horns sign, loops the loop, does a barrel roll
and drops Santa back off into the lake at just the right spot to cruise up
to your boat dock unaided. Santa whips out a lassoo, drops it over the corner
of the boathouse just in time to stop himself sinking, kicks off the skis, does
a huge leap from the lawn headfirst down the chimney and pops out right in front
of the three little girls with a big fat grin and a loud Yippppeeee!!!
I wish!"
The girls and I were laughing out loud tonight when I read these out loud. Hysterical or what!?
---------------------------------------------------------------------------------------------
Adrian has had his first day of large dose of chemo. He says he can feel it in his body, but he is not hibernating... at least not yet, it is only day one. When I say hibernating, I mean he feels so lousy he is just sleeping non stop.
On Monday when he went to see Dr. Alousi and did labs his WBC was down to 2, I think he said. That is really low. Which is a little weird since he hasn't had chemo for weeks. But Dr. Alousi had said it was ok and nothing to worry about.
It is the same thing as Black Friday, when his WBC was down to .3 and he was feeling so good he went to the mall (!!!!)... he is not doing that again. :) It is easy to forget about the counts when you feel great and have been doing chemo and want to go out and be 'free'.
I trust Dr. A with this whole thing. Dr Fayad said that Dr. A does a lot of Allo transplants and deals a lot with Graft vs. host (and vice versa) disease. Not that it is a risk for Adrian, but it is nice to know he has all the knowledge for the 'difficult' situations.
Adrian told me there is a really nice day room where the patients on the transplant floor can go and hang out. Great they have that, so he doesn't have to sit in the room all day long - would make anyone go in sane. Plus he said he had a decent dinner (!!!) that is a first!! :)
I am off to bed, have to see if I can get my laptop fixed tomorrow... I miss it!!!
Chloes Santa letter
I hope your eye feels ok.
I know i have been naghty.
This year.
Im trying to get nicer this year.
Love chloe
For santa claus
I know i have been naghty.
This year.
Im trying to get nicer this year.
Love chloe
For santa claus
Tuesday, December 14, 2010
Day -7 to 0
-7 & -6 are completed and Adrian feels fine tonight. He's been working most of the day.
As you can see, E drug is the same as in ICE. That is good, because he's had it before. But not this much, guess therefor the name "high dose chemo".
À week from today we will be on day 1 already!!!
Monday, December 13, 2010
December 13, 2010 Lucia day in Sweden!
It is Lucia in Sweden today - she comes in the dark and spreads light. She has a crown with candles in her hair and she sings songs.
He saw Dr. Alousi this morning, then they had missed out on scheduling a PET scan, which the squeezed in. He also did labs.
Tonight he checked in to the hospital and will start chemo tomorrow. The chemo will run until Saturday then one day of nothing and Monday is the NEW START!
DAY 0!!! - Transplant Day!! December 20, 2010
Sunday, December 12, 2010
December 12, 2010 Back to Houston again!
We had a great weekend, Princess Party, Holiday Party and hanging with friends! Gorgeous day today, supposed to freeze tonight!! Yeay!!
Quite funny, earlier this year, not sure all of you read the blog then. It was 'snow storm' when we drove home from Houstoun. When it snows or freezes in Texas, everything comes to a stand still. School shuts down, stores etc. Almost reminds me of when it was Hurricane season in FL. We had to go and get groceries and bulk up at home, but when you arrive to the grocery store, the shelves are empty. At least, milk, eggs, bread and so on.
Kind of same thing here in the winter... :)
In Sweden they even play outside if there is snow/rain/cold. Some pre schools they even nap outside, I think that is really cool.
I don't have a whole lot of information exactly what will happen this week. He has appointments with both Alousi and Fayad tomorrow and then being admitted in the afternoon.
My guess is chemo will start tomorrow evening or maybe Tuesday. That is the high dose chemo, which will prepare his body for transplant. WE ARE GETTING CLOSER! (I am not sure exactly what day the transplant will be, will keep you posted)
Again, transplant is very UN EVENTFUL, he will be in his bed and he IV bag will be hooked up to his central line and that is it, basically. I think it might take a couple of hours and then it is over. He won't feel it or be in pain from it.
It is more powerful and exciting knowing what this little bag of stem cells can do for one person. Crazy really.
My next door neighbor growing up, his name was Tomas. He had leukimia I think. This is 25 years ago, roughly. Tomas had to have a stem cell transplant done and he was in the hospital for 3 months straight. Back in those days, he was actually in a bubble. They had the plastic around his bed and his dad was with him. It was the only person he could have contact with except from doctors. Talk about getting cabin fever.
Well, again we have to be thankful for the technology and knowledge the doctors do have today. Even if we sometimes think they should know more. I know we have to be careful with Adrian not getting germs and stuff, but at least he doesn't have to be in a real bubble.
We will be ringing in a New Year and a new Beginning on the 31st!! If Adrian can't drink on New Years Eve, I will have those drinks for him, not a problem! It will be time to celebrate!
Quite funny, earlier this year, not sure all of you read the blog then. It was 'snow storm' when we drove home from Houstoun. When it snows or freezes in Texas, everything comes to a stand still. School shuts down, stores etc. Almost reminds me of when it was Hurricane season in FL. We had to go and get groceries and bulk up at home, but when you arrive to the grocery store, the shelves are empty. At least, milk, eggs, bread and so on.
Kind of same thing here in the winter... :)
In Sweden they even play outside if there is snow/rain/cold. Some pre schools they even nap outside, I think that is really cool.
I don't have a whole lot of information exactly what will happen this week. He has appointments with both Alousi and Fayad tomorrow and then being admitted in the afternoon.
My guess is chemo will start tomorrow evening or maybe Tuesday. That is the high dose chemo, which will prepare his body for transplant. WE ARE GETTING CLOSER! (I am not sure exactly what day the transplant will be, will keep you posted)
Again, transplant is very UN EVENTFUL, he will be in his bed and he IV bag will be hooked up to his central line and that is it, basically. I think it might take a couple of hours and then it is over. He won't feel it or be in pain from it.
It is more powerful and exciting knowing what this little bag of stem cells can do for one person. Crazy really.
My next door neighbor growing up, his name was Tomas. He had leukimia I think. This is 25 years ago, roughly. Tomas had to have a stem cell transplant done and he was in the hospital for 3 months straight. Back in those days, he was actually in a bubble. They had the plastic around his bed and his dad was with him. It was the only person he could have contact with except from doctors. Talk about getting cabin fever.
Well, again we have to be thankful for the technology and knowledge the doctors do have today. Even if we sometimes think they should know more. I know we have to be careful with Adrian not getting germs and stuff, but at least he doesn't have to be in a real bubble.
We will be ringing in a New Year and a new Beginning on the 31st!! If Adrian can't drink on New Years Eve, I will have those drinks for him, not a problem! It will be time to celebrate!
Saturday, December 11, 2010
Thursday, December 9, 2010
December 9, 2010 Aj is back home again
It will be really brief tonight, I am not sure if I am coming down with something or if I am just really cold and sore from running. I think I am going to sleep with this laptop on my belly, like a hot water bottle. Could do with a few more though.
Aj has had a pretty quick week in Houston, he cut it short with a couple of days. Had this been when he was in school, still living with Tommy and Fabby, the belt or paddle would have been out long time ago. :)
He skipped today's class "Introduction to Stem cell transplant".... I think he just wants to do the fast track course 'a la Catia' - just have me tell him what is to be expected.
Lets see... when a husband goes in for transplant a daily massage is needed by the wife.... If schedule allows - do two. Eating is a must, preferably out as many times as possible, don't want to risk the cooking interfering with the massage schedule... lol.... just kidding..
Adrian still amazes me, he has had chemo every 3 weeks since February more or less, with a little break in the summer. All these tests, poking, sticking and drinking horrid drinks. He still has great attitude and spirit. He is working away like a horse and the only breaks he has, he is in Houston or home feeling like crap because he has just had chemo.
It is like a Muhammad Ali fight, you know who is going to win... just how long will it take to get there. We are getting closer to that bell ringing though. The transplant will happen within 2 weeks now, I think.
So this week, just a bunch of tests and no results or meetings with doctors at all. They changed the central line catheter, to a smaller one. It is less risk of infection with a smaller one and there is no need for a big one, once the stem cells are out.
There are still cords hanging out though. He is feeling well and his hair is actually growing on his head, pretty impressive.
Aj has had a pretty quick week in Houston, he cut it short with a couple of days. Had this been when he was in school, still living with Tommy and Fabby, the belt or paddle would have been out long time ago. :)
He skipped today's class "Introduction to Stem cell transplant".... I think he just wants to do the fast track course 'a la Catia' - just have me tell him what is to be expected.
Lets see... when a husband goes in for transplant a daily massage is needed by the wife.... If schedule allows - do two. Eating is a must, preferably out as many times as possible, don't want to risk the cooking interfering with the massage schedule... lol.... just kidding..
Adrian still amazes me, he has had chemo every 3 weeks since February more or less, with a little break in the summer. All these tests, poking, sticking and drinking horrid drinks. He still has great attitude and spirit. He is working away like a horse and the only breaks he has, he is in Houston or home feeling like crap because he has just had chemo.
It is like a Muhammad Ali fight, you know who is going to win... just how long will it take to get there. We are getting closer to that bell ringing though. The transplant will happen within 2 weeks now, I think.
So this week, just a bunch of tests and no results or meetings with doctors at all. They changed the central line catheter, to a smaller one. It is less risk of infection with a smaller one and there is no need for a big one, once the stem cells are out.
There are still cords hanging out though. He is feeling well and his hair is actually growing on his head, pretty impressive.
Wednesday, December 8, 2010
Tuesday, December 7, 2010
December 7, 2010 Back in Houston
Adrian headed back to Houston this morning and had a bone marrow biopsy when he arrived.. That was it for today's appointments.
You have seen the schedule for the rest of the week and know it is going to get a lot busier. He is feeling just like normal and has no pain or anything. Strong like an ox!!!!
Last week and the week before he stayed in the Rotary House - the hotel which is only a skywalk across from MD Anderson. They were full this week and they told me about a Mariott Medical Center hotel a few blocks away. Called there and got a room, half price compared to Rotary House and according to Adrian, 10 times nicer! He says it is super nice, reminds him of W hotels! What a hidden gem in 'Medical City' in Houston. They also have shuttles which run every 30 min to different hospitals, all day long. Doesn't get much better.
Here is a link to an article by James Watson, co-discoverer of DNA:
Sunday, December 5, 2010
Urghhhhhhh...
My computer packed it in tonight :(
Taking it to Mac store tomorrow, hopefully nothing bad.
Might be a few days for updates
Catia
Saturday, December 4, 2010
December 4th, 2010 Back home before next trip to Houston
Sooo..... Yesterday I was texting with Adrian back and forth during the day, when he was going to meet with Dr. Alousi and all of that. The last message said he was meeting with the nurse.
After that, I had to leave to pick up Baby O. Drove out and just behind our house in the steep hill I met a black Mercedes... looked at the number plate and it took me 1 second - slammed on the breaks and did a u-turn.
Adrian had driven home to surprise the kids!!
I told him, what if I had driven down to surprise him early with the girls, I would have been in Houston before I would have known he wasn't there. THAT would have ticked me off, just a little bit... :) lol
It was a pleasant surprise to have him home!!
Anyway, he didn't change the central line (don't know why) He did get a blood transfusion - platelets were low. He doesn't have to take more Neupogen shots, since the collection is all done. It took two days for completion.
Sorry for vague information, but he is not asking too many questions when he is there. He turns up for appointments and that is about it.
But to let you all know, he is feeling great. Which is expected in a way, he hasn't had chemo for 2 weeks and I think it is about another week or so before the 'high-dose chemo' before transplant.
Adrian will head back to Houston early this week for check ups and he also has do do the CT, PET scan as well as a bone marrow biopsy. This would be to be 100% sure there is no cancer in his body before transplant.
There are A LOT of appointments next week and up until the 13th of December, (I have linked some of them to WIKI explanations, just click on them) The others are just chats with Doctors or nurses or lab work. None of these appointments are new to Adrian. He has done it all before. Plus there are no drugs involved, he will not be feeling bad or anything.
After that, I had to leave to pick up Baby O. Drove out and just behind our house in the steep hill I met a black Mercedes... looked at the number plate and it took me 1 second - slammed on the breaks and did a u-turn.
Adrian had driven home to surprise the kids!!
I told him, what if I had driven down to surprise him early with the girls, I would have been in Houston before I would have known he wasn't there. THAT would have ticked me off, just a little bit... :) lol
It was a pleasant surprise to have him home!!
Anyway, he didn't change the central line (don't know why) He did get a blood transfusion - platelets were low. He doesn't have to take more Neupogen shots, since the collection is all done. It took two days for completion.
Sorry for vague information, but he is not asking too many questions when he is there. He turns up for appointments and that is about it.
But to let you all know, he is feeling great. Which is expected in a way, he hasn't had chemo for 2 weeks and I think it is about another week or so before the 'high-dose chemo' before transplant.
Adrian will head back to Houston early this week for check ups and he also has do do the CT, PET scan as well as a bone marrow biopsy. This would be to be 100% sure there is no cancer in his body before transplant.
There are A LOT of appointments next week and up until the 13th of December, (I have linked some of them to WIKI explanations, just click on them) The others are just chats with Doctors or nurses or lab work. None of these appointments are new to Adrian. He has done it all before. Plus there are no drugs involved, he will not be feeling bad or anything.
| 12/xx/2010 | BONE MARROW ASP/BX | Bone Marrow Aspiration | |
|---|---|---|---|
| 12/xx/2010 | BLOOD/SPECIMEN COLLECTION | Diagnostic Center | |
| 12/xx/2010 | CHEST, PA & LAT | Diagnostic Imaging A | |
| 12/xx/2010 | EKG - RESTING | Diagnostic Center | |
| 12/xx/2010 | ALOUSI, AMIN, M.D. | Stem Cell Transplantation | |
| 12/xx/2010 | SOCIAL WORK VISIT | Stem Cell Transplantation | |
| 12/xx/2010 | ECHOCARDIOGRAM | Cardiopulmonary Center | |
| 12/xx/2010 | SPIROMETRY AND DLCO | Cardiopulmonary Center | |
| . | |||
| 12/xx/2010 | BLOOD/SPECIMEN COLLECTION | Diagnostic Center | |
| 12/xx/2010 | INTRODUCTION TO TRANSPLANT | Stem Cell Transplantation | |
| 12/xx/2010 | STEM CELL PRE-ADMISSION CLASS | Stem Cell Transplantation | |
| 12/xx/2010 | FAST-TRACK LAB COLLECTION | Hematology Fast Track Lab | |
| 12/xx/2010 | RECIPT HT/WT STORAGE CONSENT | Stem Cell Transplantation | |
| . | |||
| 12/xx/2010 | ALOUSI, AMIN, M.D. | Stem Cell Transplantation | |
| 12/xx/2010 | BUSINESS CENTER FOLLOW-UP | Stem Cell Transplantation | |
| 12/xx/2010 | FAST-TRACK LAB COLLECTION | Hematology - Lymphoma Clinic | |
| 12/xx/2010 | FAYAD, LUIS M.D. | Hematology - Lymphoma Clinic | |
| These can change, be removed or some added in an instant. :) It is pretty amazing how the MD Anderson network actually works. We log into Adrian's MY MD ANDERSON and it has all his test results, appointments, emails and more right there. My MD A is like your own website with in the network, the pathologists and doctors and all the rest all communicate via this as well. It is incredible how technology works today, back in the days they had to send letters out and that would take days. Here it is all done in a second!! | |||
Friday, December 3, 2010
Thursday, December 2, 2010
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