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Friday, April 30, 2010

Remission party for one !

I found out a little earlier this evening that aj is in remission!!!!!
Yeeeeeaaaaahhhhhh!

So since he's in Vegas I opened a bottle of Veueve and toasted with
the kids ( they had soy milk) :):):):):)

What a great day!!!!

Girls night celebration!!!

Wizard from Oz

Thursday, April 29, 2010

You got to love Austin !

Yuck!!!!!!!!!! In our street, ratsnake, totally harmless, but sooooooo
gross

Wednesday, April 28, 2010

April, 28, 2010 Loooooooooooooooong Day

So happy this day is over. It has been a looong day. As some of you know I help my friend Lee with her VRBO's vacation rentals by owner. She has a huge beach house in Destin and a condo in Aspen. Now.. the person who did this before me, wasn't very organized and kind of left stuff in a mess. So I sorted it all out and keep track of contracts, calendars and check in and out. Pretty simple straight forward stuff.
I have everything double so that there can't be any mistakes, I have it online on the website in the calendar and notes plus I print out a copy of everything and keep on file. Just to be sure no mistakes.
I was going through my folder and saw that a name on a check didn't match the name on the booking - to pay the balance of the lease. Sometimes they split with who ever else they are going with so that is not super strange. What was strange was that the amount on the check was waaay off from their balance. $1800 more... 
I called Lee and told her something is not right here.. I emailed the guy who sent the check and asked him if he was in the party with Doris L.  He (James) emailed me back and said, no he wasn't and that he was now worried it was double booked. This is for a week in June. This was late last night. He then emails me and tells me that it better not be a double booking because they are getting married on the 10th  on the beach. (its a massive beach house right on the beach)
I email Lee - We are in shit street with this I think.... 
So this morning I called him and he said they had sent out invitations to over 100 people and the caterers were set up for the house and so on. He did book it in June last year so it was quite a long time ago. 
I tell him, don't worry - I will offer the other family something else.

I call Doris and tell her we have a problem and I can offer her a different week, refund or maybe a different house. She gasps for air and says "my daughter is getting married there on the beach on the 10th"
My heart missed a few beats, I can tell you that much. I told her the whole story how it had happened and that I would put my heart and soul into finding another house for them. I mean unreal, out of all the double bookings.. 2 weddings!!!
Also since the house is so big, it sleeps 20 so its not super easy to find a big house like that on the beach 1 month out. These places book a year in advance. 
So my day has been with the cell phone by my ear the whole day and on the computer. Calling agents, lease offices, listings and God knows what. Then back and forth with Doris telling her I am working on it. I managed to find a couple of houses but one only slept 16 and it wasn't on the beach and then the other were too far away another one was a condo. It is slim pickings in end of April for this. I just felt sick to my stomach for this poor lady and her family. 
So the whole day has been, found a house big enough, five minutes later they tell us its booked. booked.booked. URGH!! 
About 5 pm tonight I finally found a house on the beach that sleeps 22 and its amazing - just thanks to a cancellation. Talk about luck - but it also had its price - $10 000 for a week. Lee has to pick that up and this 'little' mishap cost her $5000 dollars out of pocket. 
So from 7.30 am to 5 pm it has been - house hunting in Destin FL. But it worked out and they are all happy. 
I told Doris tonight when she could finally breathe again that she had been amazing, not once did she loose her temper - NOT ONCE did she even raise her voice. If that had been me - I would have been like a Vulcano! But she was so sweet and when she was mad she still kept it together. What a quality to have!! I am in awe!  I told her I would gladly track down Andre (who did the double booking) and give her his number and address and she could just have a 'free for all'.... :) 

Aj is feeling good - he is just like 'normal' (pre cancer) just the same :)



Tuesday, April 27, 2010

April, 27 2010 Girls Girls Girls

Busy afternoon with the girls and their friends - all together it was 6 girls playing all afternoon! Finished off with swimming in the pool. The water was freezing so I just sat on a chair and watched closely. :) Annie who is turning 10 on same day as Chloe was the team leader.  Funny actually, Annie and Chloe have the same birthday and they are having their parties at the same place  - on the SAME DAY!- Skate Land - roller skate place.
We are having a joint party for Sienna & Chloe - Roller Blade to ABBA tunes ::) hihihi  that is at 10 am and then Annie's is at 4 pm, same day!!!

Still no word from Houston no calls at all today. Please don't sit and wait for evening and that I will post something. When we hear something, I will call you guys of course!!

Girl power!

April, 27 2010 I found this on CNN - I don't think they really want a cure... too much money in it!!

Do you really think they want a cure to cancer??

Monday, April 26, 2010

April 26, 2010 New pet!

I know you all saw the disgusting new pet we have - but only for one night... its off to school tomorrow. Not sure if you remember last time we had a tarantula in the back yard - I sent AJ out there to 'kill it before it killed the kids'.... well... Chloe came home from school the very next day and was upset because I had ordered to have it killed. They are good to have around to eat nasty insects and stuff and are not really as dangerous as you think. (I did read some about them)
So when I saw this 'little' one today, I said to Aj 'quick' get a box to put it in so that Chloe can bring it to school. She will be so happy.
Both of them were excited when I told them what we had captured and that they could bring it to school, on one condition... DON'T bring the sucker back home again!
So now its sleeping in the kitchen in a tupperware box with leaves and breathing holes :)
Just praying that it will still be in the box when I wake up tomorrow morning!!

Aj is good, back is good the only thing he has is tingling finger tips - but what that is due to we don't know.. maybe printing too much on the laptop....? :):):) They did ask him ages  ago in the beginning if he had that but at that time he didn't. But its nothing that is worrying.
He's off to Vegas on Thursday for the weekend with Barry. A little break before his next chemo - round 5 next week.
Still haven't heard anything from Dr. Fayad. Amira emailed me this morning to let me know that he was doing rounds at the hosptial all morning and then seeing patients all afternoon. I see it as - it has to be good because otherwise he would be 'hunting' us down to tell us that something else needs doing. So I am not worried :)

I booked our tickets to go Sweden last night, AJ has insisted on us going so we are going for about a month. I have been hesitant and still am a bit -  about going... I mean off course I want to, but the fact of leaving him - I know that treatment will be over by then, but still.
He is coming out with us for a week, I have decided that we will spend that week in Stockholm. He has never seen Stockholm in the summer and its just amazing. So I am really looking forward to that, he will love it.

Baby tarantula!

Sooooooo grosssss!!!! Urghhhhhh!

Sunday, April 25, 2010

April 25, 2010 Gorgeous DAY!!!

Its absolutely gorgeous outside today - perfect weather !!!!!

Adrian went with Chris yesterday - kayaking down colorado River out of San Marcos. He said it was really nice there. He was exhausted when he got back but had had a great day. His back is doing great and he is feeling good!
Will write more later!

Friday, April 23, 2010

April 23, 2010 Allergies, throw up and hot!

Woke up of Chloe coming down saying she had tummy ache at 2 am this morning. 2 secs later she says she has to throw up. I tell her to run to the bathroom and she makes it to the first set of doors in our bedroom the its all coming up. Poor thing, she puked and then she says 'sorry mamma' - Good God little one, its nothing to be sorry for!! I almost felt bad that she said sorry :)

After a shower and some clean up, I got her mattress and put it next to my bed and she had a 'sleep over' in our room. :) woke up and felt fine. But stayed home from school anyway, just in case.

Around 9 am the phone rang and it was Dr. Asian lady from MD Anderson. She is soo confusing its not even funny. You can honestly thing its Jackass playing a joke on you when she calls.

Dr: Helluuuu can I help you?
Cat: Well, we are waiting for test results... do you have them?
Dr. : Whuuut teeeeeeeeests?
C: Flow and another one.
Dr: Who am I speaking tuuuuu?
C: Catia & Adrian (Aj was next to me)
Dr: Okiiiiiim so what you need?
C: We are waiting for test results.
Dr: Yeeeees, what can I doooo?
C: Can you tell Dr. Fayad to call me when he is in next week, please
Dr. Yeeees, thank you

I am not joking this is how she is. Dr. Fayad said that she is very good at what she does. Which might very well be the case, she is just not very good at either English or patient/Doctor relation. Its very frustrating as a patient to not understand a word she is saying and then what you do understand doesn't make sense.
It was funny because I even said to Aj yesterday, I bet you the Asian one calls up and we won't know A from B anyway. *Bingo*!

Aj's back is a little better today so he might get convinced that chiropractors do actually work! :) He has always been a bit wary of going to one.
We do know that Aj has got some kidney stones (has had from the beginning of this journey) but it shouldn't be what is causing this type of pain. Actually not sure what is happening with the stones, guess we will find out one way or another. They weren't big so Dr's were not worried about them at all.
He has some ringing in his ears, that is 'normal' - that is what Lisa said. Something that I guess will go away at some point.

I am feeling the darn Austin allergies... itchy throat and swollen eyes... not a lot that helps, tried zyrtec, claritin & the other one on C... what ever its called. Anyone has any tips? might need prescription strength.

Time to go to bed, got to sort out my car tomorrow, hopefully getting rid of the loaner car that is driving me in sane. kids love it though because I let them eat/drink in it - basically free zone in the rental car. Makes my life easier too - you want to eat?? SURE! here is snacks - oh you dropped the bag with crackers? - Its ok, sweetie - Just eat the ones that are left in the bag. :) :) :)  when its my car - NO food or drink. Its funny though, its a Subaru Outback (that car has a sex appeal of -150 on a scale of 1-10) so for sure not feeling like a 'hot mama' driving that. Pedal to metal and I swear it doesn't budge - it doesn't accelerate more than than Sienna's Barbie Jeep. Actually Sienna could probably get off quicker than me if we raced, so totally child proof car. Even Chloe could drive it and I would feel safe... might be good for a first car actually.. Anyway hoping to part with Subaru as the girls have named it.

Chloe stayed home from school today and tonight I found this note. Ms.
Sumners is her teacher :)

Thursday, April 22, 2010

April 22, 2010

Went grocery shopping today and went past the meat counter and I hear Chloe say:

"Gross - they killed someone and carved out their meat!"

I looked at her and said "what did you say?" She looked at me and goes " I know a lot, mamma - they teach us in school"

Yeah, I'm sure..... :)

Aj had his back adjusted today, its been pretty bad. So he went to a chiropractor - came back and says - well that didn't help! - hm.... I told him, its not instant magic, it takes a day or two :) - impatient as always!

He mentioned it to Lisa yesterday but she didn't think it had anything to do with Lymphoma. His WBC was at 4.6 yesterday too. So actually not bad for his body doing it all by itself! :)
She did tell him that she had heard that the 5th treatment is the worst one, so we just have to wait and see there too.. He is doing really well, just his back that has been bothering him the last few days. Maybe its from laying down.. we were trying to come up with a reason for it. :)

We are still waiting for the final results - I emailed yesterday and Amira called back and said that Dr. Fayad has been super busy with in patients all week. But she has reminded him to look for it. So wait..... a bit more I guess....

Roly poly hunters!

Baby O has a playdate Chach!

Wednesday, April 21, 2010

Long day for baby O

Family hour!

April 21, 2010 Kindergarten Round up

Aj is having back ache - not bone ache as from neulasta, it hurts him when he stands up. He is going for a normal check up tomorrow, see if they say its normal. It would be strange if the body is not reacting in some kind of way to the chemo.
Also yesterday he said that his rib cage is tender to touch on the outside - this is just like last time after chemo. he thought it was the neulasta that caused that, but clearly its not. Tomorrow he has an appointment to see Lisa, nurse practitioner for a normal check up. Then we will find out what his WBC is with out the influence of Neulasta - pretty interesting. :)
He is still moving around and is in good spirit so he is still doing great even though some aches and pains.

We went to Kindergarten round up today with Sienna, there might be a house that we are looking to rent by lake Austin. The school there is Bridge Point, which is an exceptional school and it sure looked great. its fairly new, so everything looks fantastic, the staff was super nice too. I have a bunch of friends who take their kids there and they love it.
Chloe said she wanted to stay at Trinity though, because in 1st grade you get to see chicks hatch :) :) :)  I think I can win her over with the bus ride to and from school. Even though I am a little hesitant to the bus thing, the way I see it... the bus ride is the only place where the kids are not supervised. The driver isn't really thinking about who says or does what unless they disturb him.
Then again... most kids go by bus and they are ok :) lol - can you call me over protective??

Tuesday, April 20, 2010

Test ride the zebra bus! Even baby o!

Sienna kindergarten round up

Monday, April 19, 2010

April 19, 2010

Not so sure Midnight Cowboy was a golden oldie... more just like an oldie & weird. :)  Oh well...

Mondays are so hard to get up and the girls even worse! I basically dress Chloe and Sienna while they are sleeping and Baby is snoring in her bed. Then get S & C down to eat breakfast, O gets to stay in bed until I get back. No point creating more work at that time in the morning :)

Aj fell asleep last night only to wake up 20 min later and then he was up until 3am when he took a sleeping pill. Plus that he is a little sore today, around his ribs when you touch them. He thought it was the Neulasta that had caused that to start with, but I guess not.  Plus he has a slight head ache, just minor one. Well all the PET and CT scans came back normal so it could be the chemo in general. :)

I am also feeling all good from sleeping pills right now, I ended up going back to my sweet dentist - the temporary crown broke off. Seriously he's the best dentist ever. Last time we were in Houston i picked as many info papers and packages to give to him as possible.
But of course when I leave first I feel like i did 10 rounds with Tyson and then tooth ache from hell on top of that. Thank godness we have half a pharmacy here at home!

Going to pass out any sec,,, ciao

Sunday, April 18, 2010

All is well - had à busy day! Aj is good, he still has the yucky taste
in his mouth (From chemo) should go away in à day or so.
Will write more tomorrow - im in bed and forgot my laptop in my Little
Office :):) watching golden oldie -
Midnight Cowboy

Sent from my iPhone

Catia James

Friday, April 16, 2010

Girls Swim lesson - from down under

Sienna

April 16, 2010 Finally Friday!!!!!!!!!!!!!

Sienna had field trip to Crowe's nest farm today - I went last year so didn't feel the need to go. Also I had appointment and didn't fancy driving 45 min to look at Fairy Woods and how they milk a cow :)

Chloe was so excited she almost peed in her knickers today when I told her she could have a sleep over at Parker's house. Bless her, its 20.30 and I haven't heard from her since lunch time today.. got to say I miss her... its sooo weird to have one less. I don't mind in the day, but when evening comes and its dinner and bath and one is missing - I feel it. :) Good thing is - she doesn't miss me at all and is happy!

Aj is doing good, he took some sleeping pills last night to help him through the night - it worked. He's been working like usual :) His back is hurting, but its not from the biopsy or the lumbar punch, its inside so maybe he has pulled something. He can't really taste food, everything tastes like s**t and he constantly has a weird taste in his mouth.

I have to say though, I think he is getting better and better on holding up against the chemo. Must be a sign that he really is strong like a bull!
Just like the hairs on his legs - they refuse to let go! He still has hairy legs - not as hairy as they used to be but there are still some. He looks like a woman in his arm pits - smooth as a baby's butt :) (no hair) his eyebrows has thinned a bit but not so you can really tell - unless you know.

Got a letter in the mail from MD Anderson - like a news letter. They were looking for people with or who were in remission with different types of cancers, Lymphoma being one of them. So I have called and put Aj on the list to contact if there is someone who wants to be 'paired'. It was so nice to speak to Eric (our contact) that I think we need to do the same. Also because Aj's cancer is so rare, would be nice for MD Anderson if they at least had 2 contact people - Eric & Aj. :)

Now I have to go, Sienna, Baby O and I are having movie night.. MAMA MIA!! ( for the 60th time)

Thursday, April 15, 2010

April 15, 2010

Yesterday it was back to Dr. H's office for Aj and he came back and didn't go to bed and rest, he was up doing stuff feeling ok'ish.
He got tired early evening and then felt nausea during the night and took some tablets for that. Then he woke up at 3 am and couldn't go back to sleep. Later figured out that it would be because he took the Prednisone so late. It makes him bounce back from feeling crummy but also causes insomnia...
So today he took it first thing in the morning instead before heading to Seton for the spinal injection.

This is the first time he is doing Chop without following up with Neulasta, no aches or pains!!!

Everything went smooth and he is tired tonight :) we are using our newly set up TIVO - so he is happy :) Mr. Gadget Man. Actually I am quite excited too, this means we only have 1 remote in the bedroom!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Not sure if everyone are aware but we have several and I mean several remotes for each tv in this house. It drives me crazy!!!!  But finally.... at least in one room... there is only 1!

Tuesday, April 13, 2010

April 13, 2010

What a glorious day this turned out to be :) :) :)
We had an early start this morning after a really bad night's sleep. I fell asleep around midnight last night and woke up at 4 am and couldn't go back to sleep. Checked out and then drove the short distance over to the main building.
6th Floor - lymphoma/myeloma for blood works - the waiting room was empty to our surprise but soon realized it was quite a few early birds for blood works. :)
I saw a couple of older people that we have seen before when we have been there, funny that you can actually recognize someone in a place as big as MD Anderson!
The lady who did the blood work was from Africa and she called herself a vein surgeon... hmm... interesting... :) or as she said a Vampire. Tell you what, she looked more like something out of Blade than ER.
All done with that and we had breakfast and then up to the cyber center for a while. Aj had to print some stuff and we had time to waste. There were the same two gentlemen who worked last Tuesday when we were there. They were having a blast - even cracking me up! Talk about positive spirits!! They were both volunteers and one Eric worked one day a week and the other 3 days a week.
Eric told us that his wife had had lymphoma and then when that cleared she got ovarian cancer, but she was still live and kicking, he said :). He decided to become a volunteer when she was ill. Now, listen to this, because its impressive - there are 1900 volunteers at MD Anderson and they save the clinic $54 million in wages every year that goes to research instead!!! It almost gave me goose bumps! WOW!!
That is incredible and I feel like I want to do more to help out clinics or something.

I did do a small deed, I think... Drove outside Whole Foods the other day and a guy who was dressed all in bike clothes stood on the side walk with a bucket and a sign. Last second I could see the sign and it said "Biking to Alaska for CANCER" so I slammed on my brakes (lucky its the loaner car Subaru :) ) and found some cash to give him. Chloe asked why I gave him money and I told her he needed food for his lunch box, because he was going on a field trip to Alaska. I felt pretty proud for a while and then it hit me... biking to Alaska or down to 6th street to buy drugs.... hmmmm... tricky one... Oh well, if people have the guts to joke and lie about cancer, they might just experience it one day and that will be punishment enough.

When we came up to 6th floor again Amira was standing in the door calling out Adrian's name. So perfect timing. She went over the paperwork and asked normal health questions. She checked the computer and of course the biopsy results weren't back yet....  Then the weird asian lady came in again. Think she is a practicing Dr. from China or something. She checked out the lymph nodes to see if they were swollen and then looked at the CT/PET scan papers and said something about increased activity in the auxiliary area on the right hand side.
We both knew better than to question her what she meant. (last time we were here she came in the room and I hope for the patients that hey have a translator when she becomes the main Dr.) So we just looked at each other and kept quiet.
Then Dr Fayad stuck his head in the door and said - I am coming to see you in a sec, the biopsy were negative and disappeared.

He came back and told us, the CT and PET Scan came back and they were good. No activity on them. Then he had just spoken to Pathology and the biopsy had looked good, no trace of CD 30 or ALK1+ on the stains that he did. No Lymhoma cells, the only thing they see is white cells and that is due to Neulasta.
Pathology didn't mention anything about Histiocytes, but Dr. Fayad said that if they had seen something 'bad' they would have told him. There are a couple of other tests that they are waiting for that are more refined tests.

FLOW CYTOMETRY LABORATORY & PCR


Clinical Flow Cytometry:
Peripheral blood, bone marrow, various body fluids, fine needle aspiration samples, and tissue biopsy samples can be analyzed utilizing flow cytometric techniques. Normal and abnormal cells in these samples are characterized based on the presence or absence of certain molecules on the cell surface or inside the cells. The samples are stained with a carefully designed panel of specific antibodies coupled to four different fluorescent dyes. The stained cells pass through two laser beams in the FACScaliber flow cytometry analyzers and the molecular signature of each cell is recorded as the intensity of fluorescence for each of the four colors. Our highly trained and experienced staff of five technologists then perform sophisticated computer analysis of the data acquired on each sample. The final diagnostic interpretation is rendered by a hematopathologist after correlation with morphological findings.

The Flow Cytometry Laboratory is a vital part of our comprehensive approach to the diagnosis of hematological and lymphoid malignancies. A diagnosis is provided based on all available material and additional tests are suggested when necessary. Conversely, when flow cytometric analysis is unlikely to yield useful diagnostic or prognostic information for the patients condition, the submitting clinician is so advised. Samples with very limited number of cells are handled to optimize diagnostic information. Recurrent disease and minimal residual disease can be identified accurately as experts in the laboratory correlate clinical findings and previous flow cytometry results.

(Dr Fayad's way of explaining this was: put the material in a blender and the stain would stick to cells a certain size. It would be a more specific test than when you look under the microscope because you are using more cells. The flow and CPR can detect much smaller cells so that is why its more defined.)

FIG 2. An apparently normal appearing bone marrow (left panel) is shown to contain a small monoclonal B-cell population (right panel, green colored dots) indicating involvement by lymphoma.

                   



PCR testing



Lymphoma cells are very very small.  For example, a one centimeter tumor has about 1 billion lymphoma cells.  So lymphoma cells will not be detected by many standard tests unless there are a significant number of cells to form a mass (a tumor) in the sample.
Returning to the analogy of testing for leaves in a pool, a sample taken with a bucket that has no leaves (tumors) might have small traces of leaf fragments (individual tumor cells) that are not visible with plain sight, which might be detected by other tests.

One very sensitive test for lymphoma cells is called PCR.  It can detect for the presence of genetic translocations (that are unique to some kinds of lymphoma in the sample).

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We won't have the answers on both these tests until next week or the following. If they come back with something on them, that would mean that something is 'cooking' in the bone marrow. But once we have that and they are good, we can say that AJ is in remission with no question marks! Right now, Dr. Fayad said that we can say that 'we think he is in remission' :) Basically, this is what it would look like when a person is in remission, but we need to have a written report from Pathology and then its all set.
After that I think there will be check ups every 3-6 months and after 5 years they will call him 'cured' :)
I asked Dr. Fayad about the CD 56 test, but they weren't able to do it because they didn't have enough material to do it on. Now there is no point in doing it, because all the disease is gone. 
Good its all gone, but bummer they couldn't do the test... 

Dr. F also said that he thinks that Aj doesn't need the Neulasta shoot anymore - YEAY!! no more bone ache!!!!!!! We also mentioned the head aches and he asked to get a copy of the MRI from Austin, so I have to get it from Dr. H's office and send to Amira. 

So, the game plan now is to do the last three cycles of Chop and then come back to MD Anderson in 10 weeks to do another staging and then its all done! He said that nobody would get less than 6 cycles of chemo when they are diagnosed with stage 4 lymphoma with such ugly presentation as Aj had and no less than 4 spinal injections. So when the 6 cycles are done, Aj will be at just those numbers. 

To finish this off... Dr. Fayad managed to get a few hinters again about no sweeping, vacuuming preferably breakfast in bed and you know all that... Talk about being on Team Aj. Luckily Amira came in and it became a tie. :):):) She goes ' You can NOT get away with that, that is mean! :) :)

It turned out to be a great day and we went out and celebrated with the girls and Fabby tonight!

Rock on Babe!!!

Driving back from Houston.

There is no sign of lymphoma in the bone marrow still waiting for two
more tests to come back. So far so good!!!!!!


Sent from my iPhone

Catia James

Blood is drawn, check vitals then breakfast!

Then wait for next appointment

Monday, April 12, 2010

April 12, 2010 Back in Houston

Adrian had a busy Monday morning and we started driving down to Houston this afternoon. Fabby took the girls down to the neighbor's house for a play date.
Feels like I know every turn of the road going down here now, good thing is its a pretty drive. Kind or country side like. Fields, ranches and tons of flowers - blue bonnets, yellow and pink ones are decorating the whole road down there. For some odd reason it feels like every time we go it goes faster and faster. I called Amira on the way down here to see if she could make sure that they have the results on the tests ready. So that we don't arrive tomorrow hoping for answers and then the tests aren't ready. I left a message but didn't hear back. It was kind of late in the afternoon though, so maybe she'd gone home already. Tomorrow will tell anyway..

Aj can feel a bit of the head ache still, he's taken advil for the last two nights. Again, its not a pounding head ache, more annoying. Have to ask Dr. Fayad tomorrow about it. Hoping its from the drugs and not the Lymphoma.

We are back in our favorite hotel :) :) never did I think that I would long to sleep at Holiday Inn.... :) I know I am not going to go on about the beds again. :)

Its not even like we can stay in bed and sleep late, when we don't have to get up for school run. We have to be at the Fast Lab at 7.45 am and then Dr. Fayad at 10.30 am. I am not sure we will get in and see him right away, since Doctors are always late, right?
Its kind of a weird feeling, not sure how big of new we are getting tomorrow, both of us are just so confident what we are going to hear.

Aj is in control, always has been and always will be. He will not let something like this take over, I know him too well. :) :) :) I have no doubt.

Now I have to start writing checks for the people who have looked after Aj so well... its quite a few :)

Ciao!!

Time to start paying the medical bills

Back in Houston

Sunday, April 11, 2010

April 11, 2010

Yesterday we went to Matt & Christy's house for a party - you know the couple who me met a few weeks ago at Barnes & Noble. (Christy that had a brain tumor)
It was great, tons of people, kids, food and drink :) Around 8 we went home dropped off the kids and Fabby (who arrived Friday) and then we went back there for 'adult night' - nothing kinky just more alcohol and no bouncy castles.
Aj had pain in his joints, legs and back yesterday so when we returned he had to sit down most of the time because he was in pain. When we got home he laid down and relaxed and it eased off a bit.
Probably spent too much time on his feet yesterday, plus it seems like the Neulasta has had a 'delayed' reaction the last couple of times. That he starts hurting more closer to the next treatment. Which is on Wednesday-Thursday-Friday. That will be 4 of 6 treatments.

So this week is the 'BIG' week... tomorrow afternoon we drive down to Houston and then on Tuesday morning we go and see Dr Fayad at 10.30am, Wednesday - Chemo - Thursday - Methotrexate and Friday -Neulasta shot.
So what we can face this week is - everything looks great and they will either cut the treatment plan short or finish off the 6 treatments, its not looking great and they will change treatment and see how the lymphoma responds to that, or a bone marrow transplant and that is a whole new chapter on its own in that case. We all know what we are hoping for :)
I have been in every day on the My MD Anderson page (private page for Aj - appointments and reports and tests and stuff) but they haven't put up the results there yet from the biopsy, I was hoping they might have posted it early... but no. So a little finger crossing on Tuesday morning would be great!!!!!

I hope it shows in the pictures how well Aj looks, he is looking great. He is back at normal weight and he doesn't look sick at all.

Dinner with farmor!

Friday, April 9, 2010

Another sleep over party! :):)

April 9, 2010

Not so much to report from yesterday, Aj is feeling ok - I did notice that he needed to shave and after a closer look even hairs on his head have started growing :) not long or anything but you can see little tiny dark dots on his head.
I wonder how that is, that it grows even though the follicles are supposed to be dead - are those the strong Irish genes maybe ??? They just refuse to give in :) Just like Adrian

Thursday, April 8, 2010

Lunch!

Wednesday, April 7, 2010

Post biopsy

April 7, 2010

Back to normal routines!

Kids were so happy to see us yesterday. Chloe woke up with a pink eye this morning so she stayed home with Baby O and I. We had a bunch of stuff to do, Baby O has swimming as well. She got to introduce her friend Ben to Chloe. :)

Aj is a bit sore in the back and can't shower for 48 hrs ( YIKES ) :) lol other than that, its again the calm before the storm.. well not really the storm but the good before next treatment. We go to Houston on Monday again, stay over night and meet w Dr. F in the morning.

I have to say I am so proud of Aj how he is doing and what he is doing. He pulled out the vacuum cleaner tonight and I told him, you are quite functional for having cancer :)
No, not joking. The way that he carries himself and his family is honestly 'huge' - not sure how to explain it. I think you all know what I mean.
He is fighting this cancer away so it won't wanna come back for the rest of his life. :)

I was going to take the girls to meet with this organization that is called wonders and worries. I think I have mentioned them before - earlier on. But now I am reasoning like this, because everything is going so well, I don't really see the need to do it. They know Pappa is sick but not all the time and he has the same energy with them as always so the only difference they know is that Pappa has no hair.
Also around chemo, they are fully accepting the he rests for a few days and that we can't kiss on the lips. They are so ok with this, that I don't want to confuse them with that Pappa is REALLY sick unless its something that will be visible for them. Not sure its correct or not, but I don't think there is a 'political correct way' of doing anything when it comes to cancer. Its what feels best for you and your family. This feels right to me.

Tuesday, April 6, 2010

April 6, 2010 Houston




We are back home from Houston and the last thing Aj had done was the bone marrow biopsy. He has two big band aids on his back and is not allowed to shower for 48 hrs. Big difference from the lumbar punch is that he should get up and walk after this procedure. He is sore and it hurts a bit in his back.

I've started going through the mountain of bills and EOB's again. I am matching every charge a doctor has made (you can imagine how many there are... )  - bill to EOB to make sure they are not overcharging us. Its pretty detailed but once its done it feels great :). I am done for tonight :):) Going to start paying some bills this week and then take it as it comes until we have paid all the out of pocket. Then its all on insurance company!

click on links below to see a bone marrow biopsy:

Bone Marrow Biopsy

Bone Marrow Biopsy - human

Business center!
We are done and will head back soon.
Half of the tests are done, ct and pet scan. Now we are back in the
bone marrow biopsy waiting room. Then we are done.
All of a sudden this place is not so overwhelming anymore, probably
because we have been here a few times by now. Still there are sick
people everywhere I look. I kind of forget that we are here because Aj
is sick. He looks so well compared to a lot of others. Again there are
all different ages (no kids) some are walking some in wheel chairs.
There is always the patient and then a helper, so everyone walks
around two and two.
All different colors, black, white, Asians, middle east - global
spread of patients.
The bone marrow place is the busiest place yet. We were hoping there
would be less than this morning, but no. :) then the count down will
start to next week and the results. Still, I'm confident that chop has
taken care of business. I really am.

:)

Sent from my iPhone

Catia James

Waiting for bone marrow biopsy. All patients are wearing masks just as
a pre caution.

Restaurant/cafe

Chapel

Post office in MD Anderson

The Fountain entrance

Monday, April 5, 2010

I forgot my laptop at home.... Will write tomorrow. Not that I have a
lot to write anyway :)

Sent from my iPhone

Catia James

Sunday, April 4, 2010

April 4, 2010 EASTER

We had a great day, we were invited to neighbor's house for Easter lunch/dinner and egg hunt. It was 3 other couples with their kids and it was super nice. It was excellent food, wine and conversation :)

Aj has pain in his  right shoulder (Neulasta) and he said when he ran up to the house to grab shoes, he felt pain in his joints. (when he ran)
Other than that he is feeling pretty good.

Tomorrow afternoon we drive down to Houston, I wish the turn around on the tests were quicker than a week. So don't expect any answers on Tuesday night (this week). We won't know anything until the 13th. Waiting.... waiting... waiting....

Happy Easter/ Glad Pask

Easter!

April 3, 2010

Aj looks great and is doing well.

We went to soccer with Sienna and then hung out with friends and did an egg hunt in their back yard. Boys went out on the lake and then they took the girls to Freddie's.

Saturday, April 3, 2010

April 2, 2010

They called from hospital this morning to say that the MRI looked normal - great news! Aj still have mild head ache and some mld pain due to Neulasta. But not as bad as last time.

Friday, April 2, 2010

Glad pask!
MRI looks normal :)

Sent from my iPhone

Catia James

Thursday, April 1, 2010

April 1, 2010 MRI day

Short one tonight... really tired. Aj had MRI and won't get the results until 48 hours later, my guess is Monday...