You can be a donor and help someone too!

A few of our friends have emailed me and asked if they can go and get tested to see if they will be a potential match for Adrian.
This is the best I have found - to do a simple swab test and join the world wide register. To test for Adrian specifically is quite expensive and insurance wouldn't cover for anyone to test.

This way, we could help someone who needs it and good Karma would come back to us. I just registered and it takes about 5 minutes and the kit you order is free. Its optional to make a $$ donation.

click the link below!

Become a bone marrow donor

September 29, 2010 Pulmonary Test @ Seton

Very productive day today!

The whole family had breakfast together - doesn't happen that often but sometimes :) Drove the kids to school and then we went to Seton to do the pulmonary test. It was quite amusing to watch :) - see the clip I posted earlier!
Very easy, non eventful test. Testing to see how well the lunges work and how much oxygen that goes in and out. Adrian had to do some funny breathing techniques and then it was done. This is also a pre transplant test.
I think this might be it for pre transplant tests... Oliver is going to have his lab work done tomorrow to see if he is a match for Adrian. This is again, as a back up, in case it is needed.


Dr. Alousi's team called back and said it was much better for him to go in and have the deep clean (teeth) now, rather than wait until afterwards. So Adrian is going back to Dr. Koch tomorrow to have that done.
We are going to Dr. Hellerstedt in the morning to do lab work, interesting to see what his WBC is.

Last night he felt a little light headed. Of course this happens after I write on the blog that everything is great :). Also, when he's hungry he says it burns in his stomach. Hard to know right now, is it the chemo or cancer making him feel like that.
Aj had a little bit of night sweat last night and felt same light headed this morning. But he still has a great appetite and eats a lot!

Oxygen and all sorts of stuff go in to the machine

If you can't view this in the email, go to blog website

:) :) :) :)

Pulmonary test

Lunch with Chloe and friends!

Chloe's Art

September 28, 2010 Gorgeous Day in Austin!

We woke up and it was 57 degrees outside!!!
I am so excited about this weather!!!

Adrian is feeling good we went for a walk after lunch today in the lovely fall weather.

Nothing to report today - still waiting to hear about the dentist and clean. I called MD Anderson and left a message for Dr. Alousi. Figured it was best to get directions from him. :)

September 27, 2010

Today was pretty much a normal day, Aj went to see Dr. Koch for a pre transplant dental exam. He needs a deep cleaning they said. But I want to talk to Dr. H and see if that is a good idea. They would clean under the gum around the teeth and I am pretty sure that will make the whole mouth bleed. Not sure that is good for infection risk or if the antibiotics would take care of that.
Dr. K said that it needs doing or he could get an infection later on from build up that he has.

We got the kit for stem cell match last week so Aj brought that in to Dr. H office today (he had to draw blood). Oliver got his last week too. Not sure how long it takes for this to come back, keep your fingers crossed that Oliver is a match. Now, this is only for back up as we are going with the Auto transplant but we hope that Oliver is the match just in case.

Aj is feeling good and looks good. He was back in his office working - the beauty of having your office in your house. :)

I had the joy of working through a huge bunch of EOBs and bills today. Its amazing how much paperwork it takes for one patient. I figured I should sort all them out before they start coming again. It is frustrating to see how the American Health system works. For example, I got a bill from MD Anderson for $750 in August.
It doesn't say what the bill is for, just that we owe them $750.
I call them and ask them when the service was given, to see if I could find the EOB to match the bill. The lady tells me that insurance has not covered any of this bill. I ask her to fax an itimized bill and also ask what it was for. It was for lab work.
She then tells me I need to contact the insurance company and ask them why they didn't pay anything.

I call insurance company up who are happy to tell me that because MD Anderson didn't put the claim in with another one they had for the same day, they won't pay this one. I ask insurance company if it really matters how many pieces of paper they get, its still the same amount. But NO, that is not how they work.
Insurance lady tells me to call MD Anderson back and tell them to send them some medical charts and other info to explain why they had separated the claims.
I asked the insurance lady if they had told them this already, her answer was yes they have sent a letter to them when it first got denied.
Ok, I call MD A back again... tell them that they need to send an explanation back to insurance because the split the claim bla bla bla.. I also asked her if they had received a letter from them when it got denied. She then goes, well maybe it was attached to the claim when it came back!!!!!

Great, they get an explanation to why the claim got denied. Instead of sending the insurance company the info they ask for, they just sent us the bill instead! I guess that was easier than collecting info. Also, that the insurance company would just say - hmmm hospital did wrong... we are not going to pay for it, claim denied. Who has to pay for it then..... PATIENT!

It is just so wrong..... :) bet you they are having this system so that people will be sick, anything from heart attacks from arguing with insurance agents to ulcers from being stressed over bogus bills!

I love EOBs and bills!

NOT!!!

Got to organize, file and pay these before the new load starts coming in!

Fall is here!!!!

September 26, 2010

Aj is almost back to normal, he felt a tiny tiny bit nauseous this morning and took a couple of pills for that. (the ones he did not take last night) might be better to keep taking them like they are precsribed.
I think the pills took care of it pretty much and he's been up all day - taking it easy watching football. After dinner tonight we went for a walk down the street.
Adrian says that he doesn't loose his appetite when doing chemo, it goes to reverse instead. He can't feel when he is full, so he keeps on eating and then all of a sudden it hits him how full he is.
I think it is a good thing - he won't loose weight while on chemo!

Every time they nurses ask if he has lost appetite or weight and the answer is no, they are happy. :)

Tomorrow he has to go for a pre transplant dentist check up (to my dentist Dr. Koch who's wife was diagnosed with cancer at the same time as Aj was first time. Plus the nurse - Keith is a survivor of Lymphoma - 8 years) and then back to Dr. H's office to do EKG and another test. All which are pre transplant tests. Not sure why they have to be done, but they do. :)

Short and sweet tonight but its all good!!

September 25, 2010 HE IS BACK!!

It was new energy today!!!

Last night I think Aj was up about 5 times per hour all night long. One of the drugs irritates the bladder so he was running back and forth. Around 3 am he had a bad head ache too.
But from then on, it has just been getting better and better throughout the day! :) It was like he checked out for 3 days and now he is back again.
Tonight he even grabbed the vacuum and zoomed around. Not sure if he was trying to prove a point to me or himself :).
Well, I give him 100 points regardless!!!  Aj sure doesn't look like he has been blasted with chemo for 3 days straight. I went to give him the nausea tablets tonight but he didn't need to take them. I think Aj is one of those people who don't have a 'nausea gene' in his body. Not like me, I get motion sickness from playing Super Mario Galaxy...


I asked him if he remembers ever feeling this bad and he said 'no'. Not that his memory has been his strong side, but I do believe him. ICE chemo was rough on him. He got the second strongest dose you can get. A 5 is the strongest and he got a 4, which the nurse ironically called 'a good healthy dose'. Nothing healthy about that dose AT ALL!

We are lucky, he is strong and has a stubborn mind like no other. He can plow through anything. Plus we have amazing friends and neighbors.

We have the wonderful Petriks living next door. They are the kids you see on the pictures - Isaak, Annie and Julia, they also have Eliah and Kate (little older) but we don't see them that much. Our girls just adore their kids and they are a blessing in the middle of all this.
Tonight we had movie night and watched Wizard of Oz with them, the old school Judy Garland one. They sat like candles the whole movie.
Plus Kelli, their mom, has arranged with neighbors on the street to bring us dinner in the evening during chemo. I feel so spoilt! THANK YOU KELLI it has been a great help!

Chloe made breakfast!

So sweet, Chloe woke up and ran downstairs to the kitchen. After a few minutes she shouted 'FRUKOST' (Swedish for breakfast). She had set the table with plates, filled up water glasses, milk - they whole nine yards! Then she seated and served Olivia and Sienna. How cute!!

September 24, 2010 Neulasta

Back to the office for the last time this week. Neulasta shot and a big bag of fluids. The Neulasta is a great drug for its purpose - it bumps up the WBC after the chemo has blasted it. I remember last time, the lowest it went was 1 and it bumped up to something like 14 or 15 with the Nuelasta.
Now, there is always something bad about drugs that work.... Neulasta gives terrible bone ache. It makes the bone marrow produce white blood cells like crazy. Because of that, all the big bones will ache because of the 'over drive'.
I read that Clarityn has helped some people with the pain. Made it go away or at least made it less severe. I asked Christy (nurse) if she had heard of it and she said yes.
We figured it is worth a try, even if it only takes the edge of the pain. Normally the bone pain comes gradually, so it will take a few days to know if Clarityn has worked or not.

Aj has been awake a whole lot more than he was yesterday. I think the body just shut down and tried to recover with sleeping yesterday. When I asked him how he felt the answer was "I can't believe it is legal to do this to someone" - I think that sums up how he feels, pretty much.
This is the part that we knew were coming though, with the chemo. All Aj can do is lay in bed and rest and recover.

Tomorrow is a new day - new energy!!!

September 23, 2010 Day 3 of ICE

(Yesterday - Thursday)
Adrian woke up feeling the side effects from the chemo, nausea. He took some pills for it and we headed back to Dr. H's office.

He slept most of the time in the Infusion room, feeling like you know what. Got home around 2pm and now its 9pm and he has slept most of that time. I would say that the Carboplatin has wiped him out. Now its just to get the drugs out of his system. The nurse described it like a bad hang over, you need to pee out the drugs and get them out of the body in order to start feeling better. 

When I ask Adrian how he feels, the answer is 'toxic'. He is not feeling very nauseous - which is one good thing I guess. 

Bridge Point drive thru fundraiser !

We did drive thru fundraiser and got ice cream!!!

Tutoring

Chloe is getting help with her home work from Isaac. He is the most adorable young man!! :):):)

Infusion room

He slept most of the time today. For sure feeling the drugs in his body. He's been asleep since we got back at 2 pm.
That's it for drugs this time, tomorrow it's time for Neulasta and some fluids.

September 22, 2010 Day 2 of ICE

It was a slightly longer day at Texas Oncology today. I checked in with the Pharmacy to pick up the anti nausea pills (4 different ones) and antibiotics, while Adrian went to the infusion room. The pharmacy told me that the insurance company has been giving them the run around about pre authorizing a prescription for nausea medicine. It took a few more phone calls from them and myself to finally get it authorized. We have definitely seen much more how the insurance companies work after Adrian was diagnosed. Sometimes its great, sometimes not so good...
What also is amazing, is that with chemo comes a bunch of prescriptions to be taken on different times of the day, with and with out certain food, on different days and so on. Now, mainly the patients at Texas oncology are older people.. how on earth can they keep all the pills apart and know when and not to take them??

Adrian felt good this morning - normal, no side effects from yesterday at all.

He was hooked up to iv from 9.30 am - 1.30 pm today and still has an iv bag (chemo) attached to him right now. It pumps out 24 ml per hour and it will stay connected until tomorrow morning.
The nurse Rachel, who by the way is super cool, said that he might feel more side effects from the drugs he received today.
I left Aj there with his Family Guy DVD and returned with lunch later on. When I asked him how he was feeling the answer was "not as good as yesterday".
We got home around 2pm and he went to bed with the pump/bag and has been there since then. He had dinner a couple of hours ago and he felt so-so then. Right now he says he can "feel" the poison going into his veins. URGHH! can't even begin to imagine what that feels like.
But the Xbox is on and game is rolling so he is still holding up really well!!!

One side effect of the Ifosfamide that is VERY RARE is that it can affect your head (NOT permanent!)... Now this is something that Dr. H said she has seen in two people in 15 years. IF it happens, there is medicine that will help. It can mess with his head, thoughts and stuff. If he acts weird I should call the office.

If it happens, he wouldn't know about it himself, I would be the one who could tell.
I have cameras and recorders ready!!! I am telling you, if he is going to go weird on me - there will be proof. He said that nothing he says or does in the next 24 hours can be used against him.
"Sure".  Lets see what comes out of his mouth first :) - the tapes will be rolling!

(Dr. H said that this is RARE, they just have to mention it so we know about it)

He might have a shock of his life time when he wakes up tomorrow morning and doesn't know who I am. :) LOL
I could cook up some story and see how long I can get away with it.  :)


(I think we are on the safe side though.... he has had the drugs since 1.30 pm today and there are no signs of an alter ego)

September 21, 2010 - Infusion Room

The journey is starting...


Started off with lab works and then Dr. H came in to talk to us about the ICE regimen. He is going to get 3 different drugs:
Etoposide (Day 1-3)
Ifosfamide (connect day 2 - disconnect day 3)
Carboplatin (Day 2)

Neulasta (Day 4) - shot to boost WBC

These are different drugs than the first time around, also how they are taken. They are all administered via IV bags into the port in his chest. But this time around he is getting the drugs over 3 days. The Ifosfamide bag will be connected and then put in a bag that Aj will carry for 24 hours. It has a pump that slowly pushes the drug through. The ICE regimen is more likely to cause nausea than the CHOP he had before, so we picked up 3 different nausea medicines in their pharmacy. These are also to be taken on different days, that is something I think Dr. H has figured out how it works best. She also said that because he is not feeling sick, he has a head start going in to this treatment.
Hopefully he won't feel nausea at all, fingers crossed!

What is a little weird is that his WBC has gone up to 7.6 which is completely normal and the LDH is down to 104 which is also normal range. (these were off before) Its just weird - the labs shows no signs of illness, but then the slides and PET scan tells us something different.

At Texas Oncology they have a room called 'The Infusion Room'. Its a room with 32 recliners in lines of 4, flat screens and a snack station. Each patient sits in a chair and then the nurses come up with an IV stand where they hang the drugs and then connect to the port or Picc lines. The patient sits here anything from an hour to several hours, all depending on what type of chemo.
People bring blankets, laptops (Adrian :)) knitting, play games, read magazines, watch TV or take naps. It is a very relaxing place and everyone are really nice.

... I started writing when we were still there. Now we just got home! :) Done for today.

WBC are up and LDH down

Transfusion Room

It has started

September 20, 2010 Uncle Oliver left

The girls knew Adrian was getting the power port back in his chest today. Oliver and I took them to school and then went home and picked up Aj. Went down to Seton and dropped Adrian off by the 'day surgery' .

He texted me and told me that they had pricked him 3 times in the arm for the IV. 3 times!!! I could understand if it was on me, because my veins disappear as soon as I park the car anywhere near a hospital. But Aj's, his are a drug addict's dream, they are popping out like they are going to burst :) everywhere :).

The procedure to put the port in was very short, I think he was under for about 45 min. After he had woken up, the nurse called me and said he was doing great, sitting up drinking Ginger Ale. So Oliver and I went and picked him up on the way to the airport. Aj was doing great, said he felt a little sore where they put it in, that was about it.

The little tubes that you see hanging won't be there all the time. They will take them away tomorrow after chemo. I will take another picture and show you what it looks like when they are gone. The port is completely under his skin.
The reason the tubes are there, is because they schedule the insertion of the port the day before chemo so that they can put the needle in while he is under.

I tried to find clinical trials this morning. We heard about one from Dr. Fayad, but it wasn't recruiting anymore. I emailed the company last week and this morning I called them to see if I could get them to take on Adrian. The trial is called SGN-35 and has had very good respond. It would take away the nausea, hair loss and numbness in fingers, actually most side effects. But it didn't matter what I said, they wouldn't take him on.
Even called Dr. Fayad to see if there were any another trials at MD Anderson, but the answer was no.

Tomorrow Adrian will get ICE in the morning. That is the name of the chemo he will get. I will get back with more information about it tomorrow.

Adrian's brother left today. Its nice to see them spend time together because they really enjoy each other. Especially yelling at the TV when college football is on. :) The girls said they would try not to cry when he left :) very cute.
All I can say is I am blessed to have Adrian's family as mine. They are all amazing.

Power port

Done!

He's out from surgery and doing great!

Catia James

Birthday Boy!

We have had a great birthday together!
Girls were so excited to give Adrian his gifts this morning. He got 'Band of Brothers' DVD series, Mario Galaxy 2 (wii), Family Guy - uncensored and an X-box College football game. A lot of electronic gifts but it should help pass time if he doesn't feel like getting out of bed while getting treatment.

Oh, I almost forgot!! B****y Texas wildlife! There was a Garter snake on the railing around our deck this morning. I mean seriously!!!! Get goose bumps just thinking about it... Aj went out and got some pictures of it, then it started moving, fell to the ground and went under the deck.
Plus, Little Baby O got stung by a scorpion yesterday - in her room! Not sure my heart can take much more right now.... I might need some valium soon. LOL.
Mosquitos like in the Amazon, vicious scorpions and now a snake on my door step!


Dropping Aj off at the Surgery suites tomorrow around 9.30 am and then just wait for Dr. K to call and tell me he is ready. I can't be in there with him, so I will take Oliver to Home Depot. Will put him to work for a few hours before he flies back to Miami. :)

Olivia has played hard today

Birthday necklace from little friends

Happy birthday in style!

We have the best neighbor kids in the world!!!!!

They all helped make the cheese cake this morning!

Thank you Girls!!!!!!

Happy birthday!

Cuddle morning with uncle Oliver

September 17, 2010 Uncle Oliver has arrived!

Dr. Fayad called and confirmed that it wasn't pizza nor burritos on the slides. It was Lymphoma. We were both secretly hoping that he would call and say: "Oh, its not that bad, lets hold off on treatment a while". But its not always wishes are granted, I've noticed....

On Monday, Adrian will go back to Dr. Abikhaled and have the power port put back in his chest. The only funny thing about this, is that it is the same doctor that did it last time. He has a child in Trinity - school where Chloe went last year.
Remember that Trinity has this wonderful program called the Shepherds? They help people who are in need. One of them is to help bring dinners to families. They did that for us, brought us home cooked meals every other day.
One day when the food arrived, it had a card on the tray and it said "We hope you like it, you are in our thoughts and prayers" Shannon & John Abikhaled.
I quickly ran and got the directory for Trinity and looked up the names, and yes it was the same family!! So I called them to thank them for the lovely meal and for putting the port in Adrian. :)  Trinity is such an amazing school, they helped us in so many ways.

The port goes in the chest and has two cords which connects with Aj's big arteries going to the heart. This will help the chemo drugs to come close to the heart and then the heart will do the job of pumping it around the body. The chemo is so strong that 'normal' veins in the arm would not hold up. It is easier to have a port rather than having a Picc line. (risks of infection and clogging with picc line)
The triangular piece of the port sits just under the skin on the right side of his chest. When he has chemo treatment, the nurse will put the needle through the skin and into the 'pad'. (he puts a numbing cream on an hour before)

On Tuesday we will go to Dr. H's office and Aj will get his first cycle of chemo. I am not sure what type yet, but will write as soon as I know. Normally, he gets there around 8.30 am and is done just after lunch. When I know what type of chemo, I can ask Dr. H about it. Then I will have some more information to share with you.

Adrian's dear brother Oliver arrived tonight, we are all very happy he is here. The girls went crazy when they saw him. :) :) :) He has come to spend the weekend and Adrian's birthday with us.

Time for bed...

EMAIL ALERTS!

I have found something that makes it easier for all of you to follow the blog. If you want to receive an email alert, put your email address in the box below. Its linked to this blog and it is not spam. 

This way you can choose yourself if you want email alerts or not :)

1. Write your email address in the box below. 

2. verify letters

3. click link in confirmation email

Done!

Enter your email address here:








~~~~~~~~~~

September 16, 2010 THANK YOU!

First of all, I would like to thank EVERYONE for their emails, comments, phone calls and wishes! It means a lot to us all, knowing that we have so many people out there caring for Adrian.

I emailed Dr. Fayad today to remind him to look at the slides before the panel meeting. Twice. Just to make sure he wouldn't forget :)

Not sure if we should expect him to call us with answers or wait until Monday when the next visit is scheduled. As for you who are new to our journey, except from the cancer itself - the wait - is one of the worst things. They do a test, we wait, they do another test, we wait. wait wait wait... I find it a little easier to accept it now. Before I used to get frustrated, now I am just a little annoyed but have figured out how the system works and its just to accept the waiting.

So we don't have any news yet. 

The girls were excited that Pappa cleared all 10 Worlds in Super Mario Wii today. They are his biggest fans. When he beats Bowser they jump high in the air and do high fives and cheer for him. Very cute :)

Last night, after the girls had gone to sleep, the only remote which works properly, got thrown on the floor so hard that the battery pack fell out. All because Mario fell in the hot lava..... oh well... :) :) - I guess its a man thing :) 

September 14, 2010

We forgot to get the lab results yesterday so Amira faxed them today.

Type                                         Adrian                normal range

WBC (white blood cell count)    4.3  K/UL           (4.0 - 11.0)
RBC (red blood cell)                  4.48 M/UL          (4.50 - 6.0)
Platelet                                        330 K/UL           (140 - 440)
Lactate Dehydrogenase              450 I/UL             (313 - 618)

Its the WBC that goes down when the immune system is low and it has gone down 0.2 since we went to see Dr. H 2 weeks ago.
I compared the labs to when he was sick in February and right before he started his very first chemo his WBC was 1.6 K/UL.
It has been as low as 1.0 - right after chemo, before the Neulasta (shot to boost WBC) started kicking in. That is the horrible shot that gives terrible bone ache. It works like a charm, for what it is supposed to do - artificially boost white blood cells. It puts the bone marrow to work to create new cells and when they are working that hard, the bones hurt. That and the numbness (from Vincristine) in the fingers were really bad side effects.  

Looking at all the other levels, everything else seems pretty normal (there are two pages full of different things the test) I told Aj that this must be a sign of his body being very strong! :)

Other than that he is feeling great and is working and playing Super Mario Wii just like normal :) :)

I called MD Anderson today to see if they could find volunteer in their register that we could talk to. Remember that we spoke to Erik in the beginning, who had the same DX as Aj (he did not have hystiocytes). Since this lymphoma is rare MD Anderson only had one person - Eric, in their volunteer register, who we could talk to. He had 6 cycles of CHOP and went into remission and that is just over 2 years ago now.
I asked them to find a male, 30-40 years old with an Non Hodgkins Lymphoma that has had an Auto Transplant. Just to see how he experienced the whole thing and how he feels now. I know each case is unique, but still.

September 13, 2010 - Preparing for second round!

We are getting ready to go in the ring for the second time with this darn Lymphoma. This time we are taking off the gloves - no rules!!! Viking style!

Today we have spent the whole day at MD Anderson, meeting with nurses, doctors, business office, labs, vital signs people you name it we've been there!
Started off with Dr. A Alousi, who is Adrian's transplant doctor. He was really nice, soft spoken man and he told us about the options of transplant.
We have the Auto transplant where you can use your own stem cells that they harvest and clean or the Allo which means from a donor. 

Dr. A told us that there aren't a whole lot of statistics to look at when it comes to Adrian's kind of Lymphoma. Its so rare so there aren't many studies at all. Even though Lymphoma is in the top 5 of all cancers, Adrian's type makes about 3 % of that. 

He said that it's better to get going with treatment now even though he feels well right now.

 The PET scan came back positive from Friday :( :( : ( . It has increased activity in the lymph nodes in his neck and some in his chest. This is the first time that the lymph nodes has been involved. It was only his spleen that was enlarged last time and of course the 80% in his bone marrow.

 The PET scan only shows the cancer in the body not the bone marrow, the black dots are increased activity. 

When he does a PET scan he gets injected with radioactive fluid that then seeks up the cells. He stands with his hands in the air for about 20 minutes and a big donut like scanner goes around his body. The picture below is what the doctors look at. 

So the plan is.... to give Adrian chemo (something different than CHOP that he had before) - he will get two cycles in Austin at Dr. H's office. Then he will have another staging, PET, CT scan and bone marrow biopsy. If he has responded well enough to these two treatments - that meaning that the lymphoma will be gone. (when he got the CHOP - it was gone halfway through, but its standard to give 6 cycles) If it's gone, then they can go ahead and do an Auto transplant. They will then give him a third dose of the chemo and then through a port in his chest with two tubes, hook him up to a machine and harvest his healthy stem cells. That will be put in a bag and frozen until he has the transplant. 

Adrian will then be admitted to the hospital after another couple of weeks and get a fourth dose of chemo in preparation to get the transplant. 

The fourth dose will be stronger so they can wipe out everything that is in there to make room for the new cells. Afterwards he will have to stay in the hospital for a couple of weeks to make sure that he doesn't get infections and the platelets, WBC and RBC starts kicking off. 

There is no risk of the Graft vs Host (or the other way around) disease (when the body or bone marrow rejects the other) when he has this procedure. The risk of complications of the actual Auto transplant is less than 5%. 

But, the risk with the Auto transplant is that the cancer can come back. We have a 50% chance of winning this round with Auto transplant. These odds would have been better if the cancer didn't come back so quickly. Dr. A said that the longer you are in remission the smaller is the chance of relapse.

After meeting with Dr. A we met up with a transplant coordinator - she went through some papers and then it was off to the Business center... 

Now, we know for example that the Neulasta shot is about $10 000 a pop and each chemo session around $12 000. See if you can just have a guess how much an Auto transplant would cost? ... our insurance company should be happy this is about half of what an Allo transplant cost...

Auto Transplant:

Evaluation $7500

Harvest cells $20 000

Transplant $100 000 

Hospital care $16 500

Mobilization $60 000

---------------------------------

           $ 244 000

The last visit was with Dr. Fayad. He is the one that showed us the picture of the PET scan and he talked about different types of chemo. He wants to look at the slides that we brought with us today and then make sure that it really is Lymphoma/Hystiocytes. If they are negative, then he will do a biopsy of the lymph nodes to see what is going on there. If positive then it's time to start chemo. 

I told Adrian that maybe maybe there will be a  miracle and it shows out that someone spilled pizza or ketchup on the slides and that is what is showing up. I will keep on hoping until Pathology comes back with the report. 

On Wednesday Dr Fayad will present Adrian's case to the panel - that is in front of all the Lymphoma doctors and they will discuss which chemo will be best for him and if he should get anything else. So I hope that on Wednesday or Thursday we will have the exact timeline and game plan. 

Early Birthday Celebration!

Early Birthday Celebration!

September 11. 2010

Adrian went to MD Anderson for his PET Scan yesterday - we should have the results of that on Monday when we go down again.
He is feeling great - no night sweats or fever. :)

Found this article yesterday that is positive at least for the ones that has tumors

CNN ARTICLE

Bone marrow biopsy

This is what they take out!

Sept. 9, 2010

Talk about rain - we had 15 inches day before last! It was just pouring all day and all night - we lost power for a couple of hours. But nothing a ton of tea candles couldn't take care of :)

The good news is that Adrian is feeling great, his night sweats has stopped - a few nights ago. Now if that means that the bad cells and hystiocites are gone too... I'm not sure. It can always be wishful thinking!

Tomorrow its time for a visit to MD Anderson, this time for a PET scan. I have emailed with Dr. Fayad and his comment after seeing the final report from the pathologist here in Austin was 'very suspicious for relapse". So he ordered Adrian to do a PET scan tomorrow (read Friday) and on Monday go back down and meet with himself and then the transplant team.
So, big day on Monday... we are also brining the slides (samples of the bone marrow biopsy) down for Dr. Fayad to view.

Its weird that  he is feeling so well and then someone tells him that you are really sick. Twisted really.

We just have to wait for Monday and see what they say. Adrian is hoping that he can wait with treatment until he really feels sick. Can't say that I agree with that approach, but lets just wait and see on Monday. If they are ok with that then I am too.
I am thinking of what Dr. H said, when she said:
"Its early enough that we are not standing with the back against the wall and the disease has got the over hand".
We need to stay in that position :) - and we will!!!

Bone marrow biopsy

Austin sunset

Sept. 3, 2010

Its raining in Austin.. last night there was a thunderstorm so the whole house was shaking. The girls ended up sleeping in our room. All three of them on a huge duvet on the floor.

You all know the reason the blog is back again... I was hoping that I wouldn't have to write about this stuff again, but someone had a different idea.
On Sunday Aj started having night sweats and he went to see Dr. H and they found out that his white blood cell count was low. Therefor they did a bone marrow biopsy, that we got the results from yesterday.

They can see some A+ cells (still only traces) but the hystiocytes are more visible and putting all the factors together it looks like early stages of relapse. Not the news we wanted to have to hear - ever.

So the next step is to go to Houston to meet with Dr. Fayad then meet for a consultation with the Transplant team and see what they together will decide. Dr H said we should come home from there with a game plan. She said that typically he would get about 2-3 months of chemo - in preparation for transplant. We don't know if he can have an Auto (his own stem cells - they wash his blood) or an Allogenic ( donor)

We will know a whole lot more after Houston, and can plan accordingly. At least he is starting out in better shape than he did last time. He is young, strong, in good shape - he will beat this!