WHAT A GAME!!!!

Wow!! USA - CANADA is hockey!! Even though USA played pretty bad, they somehow managed to get into over time! Very exciting!! Canada deserved the Gold, they were playing really well.

Today was yet another great day - Aj was a little tired from yesterday but we didn't do anything to hard today. Just chilled at home most of the day. Some of the hairs on his legs are falling off. But none on his head yet. Would be amazing if it doesn't. Just have to wait and see. 

I guess that is one of the hardest things now that the shock with the diagnoses is over, the unknown, the waiting game. 

We don't know if they will change treatment (until tomorrow), 

Will he need a bone marrow transplant, if so - when, 

How he is going to feel after the next chemo, wiped out like before or not so bad, 

How will it feel to have the port in the chest, will he feel it, 

Is he going to loose his hair? 

All these questions and only time will tell.  So again, baby steps - just one day at the time. :) I will keep you guys as informed as I can tomorrow, I know that you are just as eager as me to find out what the doctor has to say. 

I found a forum online, but not a whole lot of people that has exactly what Aj has been diagnosed with. I wrote in it and contacted two people that have Anaplastic large cell lymphoma but ALK -, but haven't heard back yet. I am going to write to the Lymphoma org. tomorrow night when I have the proper diagnoses on Aj. We said that we would wait and really really look into stuff until Dr. Fayad has said 'THIS is what you have" 

I did read in a book that you can't compare any Lymphomas that aren't the same, not even like the one like I mentioned above - that is ALK - rather than ALK + like Aj. So that is my goal to find people with the exact same diagnosis. 

But again, I want to make 100% sure that this is what he has. 

Tomorrow I hope we have some anwers! 

Gorgeous Day!

Not a whole lot to report today more than we have had a fantastic afternoon!

We went to a friend's house on Lake Austin, the weather was amazing, kids were playing and just really nice!
Aj, Chris & my dad went out on the Lake for a quick spin in the boat. Chloe went to movie night at a friend's house and we picked up food.

Aj is still feeling good. He started to sweat a little bit last night, so tonight I found a thinner duvet for him. Lets see how that works. Found some good positive info about ports that I emailed to him.

Canada - Slovakia Semi final

We had breakfast in the hotel this morning, same couple were working as last time. Last time we kind of laughed it all off and just kind of shook our heads when they messed up the orders and their comments on stuff. I am 'princess' and Aj is 'amigo' :) we always get everything 'special' and its not always what we ordered. Quite funny.
Of course Aj got cheese on his omelette after 15 min of waiting for it plus that he made him write the order down on paper. So he sent it back, to make up for it the guy started dropping off food at our table every time he walked by, fruit, yoghurt etc. which we couldn't finish anyway.
Then the bill comes and he goes ' Amigo, special just for you and princess' we open it and seriously, not a lot of special about paying full price, is it? Or am I missing something here?

Aj is still going strong, drove home from Houston. Still minor aches and pains, inside of his thighs, under his feet or maybe his ankles, wrists. Basically bone ache. Did I mention that we have the port 'surgery' on Wednesday? He is not sure what to make of that, but it has to be better than the PICC line and safer too.

We are also trying to figure out how we think he is going to feel after the next chemo. It could of course go both ways we all know that. But hopefully he will be able to hold up better than last time, since he has not had rigors 3 weeks solid prior to getting chemo. That he is having a 'strong' period right now where he is able to eat and feel 'good'.
BTW. he just inhaled a huge bowl of popcorn since I started writing this. I try to give him 4 meals a day and then 2-3 smoothies/juices in between that plus some snacks. He has no idea that I put 40 almonds in his shakes instead of 10 which is says in the recipe. :) Tastes just as good. He offered me to finish it off and I was like, nah its ok. I mean holy cow - it was about 1000 calories in that smoothie. Not like I need that!!

On our way home from Houston we stopped at Westlake Pathology Center to draw some blood. Prep work for the port insertion on Wednesday. Then we are pretty much ready for that. He has to shower in an antibacterial soap on Tuesday... hmmmm hand soap?? not sure I have heard of Antibacterial shower gel unless its iodine and then he'll be orange..

Also, I tried to call Seton Central today to get the slides of his previous CT scans and all the other scans and xrays he had done while he was there. So that I could give it to Dr. Fayad just in case he wanted to compare to what it looked like before he had Chemo. I was given the run around like crazy, one place to another to another to another. Then I was on hold for about 20 min to one place - the lady picks up only to connect me to somewhere else. Who in their turn connected me right back to the same place and I was put on hold again!!!! So frustrating. Left messages wherever I could then I called Dr. Siegefoos & Dr. Hellerstedt's office to see if they could help me. Nobody has called back. Aj thinks that if Dr. F wanted it he would have asked for it, I was just thinking of doing it to have more info and material for him to work with. We will see, I am going to try tomorrow again with Seton. I'll be darned if I can't get hold of it, how difficult should it be!?

To finish the evening off, Sweden won gold in Curling - the most gay sport in the world according to Aj. But hey - it earned Sweden a GOLD! :) Plus USA spanked Finland in Hockey. USA in the final now!

BED!

Finally we are back in the hotel room, the CT scan took forever... it was the longest we've had to wait anywhere. I did get a good laugh though :)
We arrive at 6pm, sign in and sit down in the waiting room. After about 45 min they called us to talk to the nurse. She tells him that he needs to drink the smoothie then wait for about 1 - 1.5 hr and then they will take him in the back to drink another one (!!!))  and then do the scan. She tells us that the smoothie will help to lighten up his intestines as well as the small hose they will put up his rectum and push a little bit of fluids up through there too. GWAHHHHHHH!!! I looked at Aj and he looked mortified.... he was just staring at the nurse and said - are you seriuos? Then he looked at me and I cracked up laughing - no holding back. I am sorry if you had seen his face, you would have peed your pants. I am laughing so much I am crying right now, just writing this.
I told him its like colonics - he'll be alright. ( he he) So for the next hour while we are sitting in the waiting room and I am reading and he is playing DS, I hear him mumble "unreal" "I can't believe this" every few minutes. (you can figure out what he was talking about)
Tried to tell him that he just had to disconnect his butt from his brain for about 5 minutes, that is all. But I tell you, he was not convinced.
After an hour they came and called him in to the next room for the next smoothie and I stayed outside. I could follow his progress on a screen, prepping for exam, ready for exam, exam started, exam finished. It took forever!!! He came back out about 9.30 pm and I asked him, soooo how was it, trying not to laugh..
He looked at me and said I didn't do it!
It wasn't necessary to do and he opted not too, lucky for him...   I told him that he was the worst patient ever who should just do as told. :) :) :) - can you tell he is feeling better ??
Then we went to grab some food and came back to hotel room and EAT!

Then there was such a cute little couple in the waiting room, they were an elderly couple and I guess the lady was sick because she went in for the scan. The husband was sitting staring at the board to follow his wife's initials and number on the board. All of a sudden he flew up from the chair and runs up to the nurses. He says, oh my wife, my wife... she vanished from the board!! You could hear a little panic in his voice. The nurse told him that she was just done with her scan and that she would be coming out the doors any second.
He didn't buy it, he said " what if she walked out and didn't see me" ! (bless his heart!!!) He walked towards the elevators to look for her and the next second she comes out the doors behind him and when he sees her, his face lights up and he throws his arms around her. Like she had been gone for a loooong time. It was soooo cute :) Adorable little couple. :)

Time to sleep and then head back to Austin! We have not spoken to any doctors today either, just tests. Monday morning is our next appointment to see Dr. Fayad and I think we will find out then what the game plan is.

Yummy smoothie! ..... NOT! This is what Adrian is working on drinking
right now. Before his CT scan. I tried some... It's like drinking
unsweetened body lotion :s. Gross in other words.

Better Analogy

Aj is out from his Scan - it all went well and we are now chilling out in the famous bed at the hotel. It hit me when we were walking out from the Mays Clinic today what the best analogy (if you can say that) for The Medical Plaza here... It looks like Vegas... seriously. There are beautiful buildings (maybe not the one below :) ) everywhere in different shapes and sizes, shuttles going from one to the other. Lobbies and coffee shops and pretty flower beds, lots of elevators and escalators, sky walks between buildings.  Just  this is all medical buildings. The photo below is from our hotel window. I will try to take some more pictures later on when we go for the CT scan. Instead of walking from hotel to hotel (vegas) and gamble with chips, people go from hospital to hospital to get treatment here. That is exactly what it looks like this 'city'.

Aj told me that he had to go into a room, got an IV which they used to put in the radioactive stuff and then he sat in a recliner for about 1.5 hours. He slept the whole time, then they took him into another room where the scan machine was and the scan was over in 15-20 min. Then he came out and we went straight to EAT! :)
The bottle with Radioactive formula came in an insulated canister and Aj told the guy, this must be good, right. But the nurse said it was more for the nurses protection, since they handle it all day long. The small quantity that Aj is getting in his body is not dangerous.

Rude guy and tacky chair!

Mays Clinic P.E.T scan

Its pretty theraputic to drive and it was around 32 degreees the whole way down with clear sky. It was so pretty.
We checked in to the hotel, they are so accomodating there, you can check in at 8.30 am and if you end up leaving early, you don't have to pay any extra. I suppose they have to be like that since all the guests are going to the different hospitals here and nobody knows how long they'll be here.
We have the scan this morning and then CT scan tonight, so it was just easier to sleep here and then head back in the morning.

They Mays clinic where Aj is having the PET scan is a much newer building, its gorgeous. Still they have to put tacky flowery chairs and stuff.. but its all nice and clean. Not as busy here as in the Main building, but we will be back in Main building tonight.
I can't go in with Aj when he goes for his scans and its killing me when I can't go in with him. My comfort is that its the same for everyone so I'll just join the club in the tacky comfy recliners.

Wow this guy is in the waiting room and has the speaker phone on this phone!!! HOW RUDE!! Its sooo loud!!!  Everyone can hear this whole conversation, I mean... please.... have some respect!!!
I sneaked up and told the front desk so that they can tell him instead of me. There is a lady who is clearly very sick and exhausted and she is trying to sleep right next to me. I can't believe the manors of this man!!!!
Took a couple of minutes and then she told him, finally peace and quiet.

I am going to hunt for some food in a bit, for Aj later so he can eat as soon as he gets out :)

Can't wait for tomrrow night...

To get to sleep in the comfy beds at the hotel again!

Today was a really good day :) Adrian went out and worked some in the office, I told him - not to much. He went out an errand and then had a good lunch and we all went to the Austin Country Club for dinner with a friend of ours and her kids. Since he is doing the P.E.T scan tomorrow, he could only have chicken and greeen vegetables. No carbs or anything else, desert could be  cheese or a slice of salami (that is what it said in the instructions) :)
My guess is that the cancer cells likes sugar and if he eats any it could mess up the scans tomorrow. So very simple food tonight and nothing tomorrow morning.
We have to be there at 9.30 am and I think the scan is around 11.30am - He's going to be starving!!! Then he has the CT scan at 6 pm and he can't eat 3 hours prior to that. So... he has a few hours in between to indulge in whatever we can find! But its only for one day and it'll be over in no time! :) :)

I picked up the medication this morning its called: PROPOXY 65 mg - its the one for the cramps. I hope they work, and just as I am writing this he tells me:  the pills don't work that great.
Ummmm.. bummer...
Good note is, he hasn't had a cramping like he did last night.

I guess we have actually been through our 'bad period' in between treatment now and this is the good again before the bad. Its just a matter of trying to make him as comfortable as possible in the bad period. Its going to suck no matter what and its not going to be fun, but if it can be somewhat bearable then it will be a little better. Also, now he knows that he can feel almost normal in between and knows there is an end to the bad. So I think that is an energy booster too. He has been in such good spirit and it just makes us all so happy - I'm sure you guys are relieved to hear that too!! :):) Its like our normal Aj is back right now.

While he is in doing the scan tomorrow (I can't be in there) I am going to go around the hospital and try to find a nutritionist to see how and what I can do to keep weight on him. Also, I know they have support groups and if I can find one, I'll go and see what its like.

They called from the office of Doctors who puts in the port. Teresa was the girl, Aj is scheduled to have the port put in on Wednesday morning. We have to go to Pathology lab on Friday to do lab work beforehand. You wish all these docs could just share all the blood they taken out of him already, right?? But again, what is another little prick in the arm in this big picture... not a lot!

I read some information about talking to kids about it or not and what to say. Still not sure what to do or what is right. they know he's sick and that we can't kiss his face and have to wash hands a lot. The org. here suggests that you use the word cancer and say that Pappa has cancer. It seems so harsch, but on the other side. Its the truth right.. and maybe it would be better. I will call them and see what they say about it.

Time for me to hit they hay - getting up at 5 am!

Good Day today!!

The Hotel had the most comfortable bed ever - I even had to look under the sheets to see what kind it was. Adrian had his best night so far, just a little bit of sweating. :) :)

We went down for breakfast and talked about driving back and Aj says, I will drive home. I looked at him and said, are you serious?? 

Yes he was! He drove the whole way home and we were chatting and he was doing great - I mean really great. He said he probably felt 80% ok and that is the best he has felt in a long time! As you could see, the closer to Austin we got, the more snow, it was crazy! Schools all finished early and have a late start tomorrow, barely any traffic out because its 'snow chaos' - its hysterical! The roads are as good as dry and its not cold enough to freeze on the ground. :) :) :)

Sienna & Morfar was outside making little snowmen today after school. Even found little carrots to put as noses. 

So the whole day has been so great - whenever Aj has got a chance he has been outside, came with me to run errands twice - he never runs errands :) 

I try to feed his as much as I can, I put nuts and all sorts in the shakes to add calories to them. He has shakes in between the normal meals. Its amazing that he looses weight even though he is eating as much as he used to if not more.

The only thing that he has felt today has been that there has been some joint pain and tonight when he was going to bed, his stomach cramped up twice. Aj walked around the house for a bit and then laid down. 

Earlier today I did send a private message via the 'mymdAnderson' page and told Dr. Fayad that Aj had these pains and cramps and within 2-3 hours his nurse Amira called me and said she had called in a prescription. The only thing was she had called it in - in Houston because she thought we were still there. So I asked that she would call it in to HEB here, but when we went to pick it up tonight, they had filled the prescription in Houston already and the insurance wouldn't cover it again in the same day. 

Will try to get them tomorrow instead.

I have to say I was very impressed how quickly MD A responded! :)  Its a personal page where we get updates about appointments and where the doctors can communicate (Houston-Austin) plus we can send and get personal messages to the doctors. 

This is what I am doing tonight... Organizing all the papers I have
received the last week!

End of the day!

Medicines & supplements

PET scan

MD Anderson Houston

Drove down to Houston early this morning and made it down pretty early, so we checked in to Hotel and then took a shuttle down the street to MD Anderson. There were hospitals wherever you looked.


MD Anderson is huge, there were buildings after buildings that all belong to MD Anderson. We went to the Main building and walked inside and kind of didn't know what to expect.
There were people everywhere, lining up for valet, information, elevators and coffee shop. Our first appointment was registration up on 6th floor followed by nurse assessment and then meet with Dr. Fayad.

Dr. Luis Fayad & his nurse Amira Pugh

                                          
There  6 different set of elevators to get upstairs and to different places in the building. Its just amazing how large it is.
It was overwhelming seeing so many sick people, wherever I looked there were people and I just knew that most of them were very very sick. Thankfully not many kids in this hospital, the Children's Hospital was right next door though. It is almost like MD is a hospital city indoors. Imagine the movie V when all the aliens are inside the big mother ship, that is how it felt being inside MD. Traffic of people walking everywhere. Some with several bags of IV/Chemo, some in wheel chairs, Aj saw one vomiting in the lobby.  People are constantly moving around from floor to floor to different rooms for different things, lab work, scans, xrays, appointments, nurses, treatment.
All it all, you arrive, see the nurse then the doctor. He decides what tests he wants done and then you get an appointment sheet where it says what type of test you are having done, what time and where. Then you start going around to the different floors to the different departments and 'check in' - sit down in waiting room and wait for your turn. When you are done there you walk to the next one and so on.
Our were:

Registration
Nurse assessment
Doctor Fayad
Remove PICC line
Chest Xray
Blood lab work

We brought a CD from Seton to give to Dr. Fayad that we all believed to be the slides from the scans and all essential info for him. But it showed out that all it was, was 4 chest xray pictures. So not a whole lot for him to look at. He read the Dr. notes from Seton and asked a few questions and then examined Aj. He weighs 150.3 lbs today
First he said that he wanted to do another bone marrow biopsy because he wanted to see what it looked like to make sure of the diagnoses. But while we were in the office, Dr. Medina - Pathology called and said that he had looked at Aj's tests and he was confirming Anaplastic large cell lymphoma. So that is clear.
So no need for a biopsy right now, probably after the second Chemo to see how things are going and how the body is responding to treatment. Dr. F said that he still wants Aj to do a P.E.T scan and a C.T scan here in Houston. Although he has had a C.T scan, they like to do their own. So, its a little bit like we are just double checking everything right now for Dr. F to see with his own eyes what is going on and then give the final word on what treatment is best for Aj. Either stay on CHOP or change it.
So we did tests today, driving home in the morning and then we go back down on Thursday just for the day to do the scans and then back home and wait and see what Dr. F comes back with.
Sorry for not having a lot of news but we have to let Dr. F do things his way and I can understand that they want to run their own tests since every doctor have their own way of doing things.


I would say next week we will have word on if the protocol-treatment is going to change or not. It just feels good that we are here and they are doing all they normally do and we will get the experts advise on everything. I mean people get treated from all over the world here, we simply are in the best place possible.

Aj has walked around the whole day with me, from appointment to appointment. A real trooper! The only thing that has bothered him today is his back, its really sore in the lower part. We mentioned this to Dr. F and he said it could be a side effect from Neulasta. I did some reading and it appears that people do get bone/joint pain in back, neck from the shot. Some take Arthritis medicine for it, I will ask the doctor next time.

Fidel, the nurse who took out the PICC line was hysterical. Such a laugh :) he was being a little sarcastic but at the same time so funny. He took off the dressing and went - oh my lord! but of course when you look at him, he would have a smile on his face. It took Aj a few seconds to figure out he was joking. It cracked us up!

I will take pictures of the Scans info sheets that I got so you can read what they are about.

Back to Austin tomorrow!!! :)

PICC line removal paper

Let the right one in (great movie by the way - you should watch it - Swedish!)

Same thing last night, sweated but not as much as three nights ago... Seems like this is just going to become the norm.
We had breakfast and then went outside - it was a gorgeous day today. Adrian walked around outside and then parked himself front row to watch me wash our cars. FYI he is a great back seat driver when it comes to car washes! "If it was me, I would rinse a little before I soap the other side. I would move the car a little bit more in the shade, but again that is just if it was me" Hahahhaha! He's cute :)
Either way my way or his way, the cars are clean and shining!

Not a whole lot to report today - we spend a few hours outside and it seems like he is a little bit more energetic today. Not running around but just moving inside and chatting and making pop corn :)
I wish he could have the PICC line out, seems like it bothers him a lot. Annoying for him to feel it inside. also Aj has just never done well with anything medical, since he has always been so healthy. So every time he feels it, it reminds him of that something is inside him that shouldn't be there.  (that is what I think, he didn't say it)
So tomorrow is the 'big' day. MD Anderson. If you guys are wondering anything, email me so I can put it in my book of questions. I have some that I want to ask, of course I will keep you guys as updated as possible on everything going on while we are there. Feel free to call anytime, if I can't answer then just leave a message or text me.
We leave about 6.30 am and our first appointment is 11 am.  It will take roughly 3.5 hours to get there.

Another new hairdo..

Time for me this time! I am at the hairdressers right now. Couldn't hide the roots anymore however much I tried!
(Temp 97.9)
Adrian had a better night than the one before. He didn't take the Restoril to see if he would sweat less and he did. But he still sweated, so not sure if its pills or Chemo. He's got his first canker sore in his mouth, I think he said in top of the mouth. - sucks... but still its expected and we already had the Triple mix that he is rinsing with that helps numb it.
The PICC line is still annoying him and I am going to ask the doctors in Houston what is the point of keeping it there if they are going to put in a port anyway. Maybe they can take it out and give him a break. I am sure they have a good reason why its still in there though.

Aj walked outside to grab the mail, hopefully a little bit of fresh air will feel good. Pretty much got his meds and supplements on a a schedule now.

Cipro
Valtrex
Fluconazole
Omega 3
Oregano oil
Gingseng
Magnesium


 in the morning an hour before breakfast - he can't mix the Cipro with a whole lot of stuff, - calcium, dairy, antacids. 
Then the same stuff at night an hour after his last meal. I keep it all in a large ziplock back by my bed so I give him a small cup with all the pills before I take the girls to school. Then when I get back, he can have breakfast. The routine is slowly building up! :) We clean the PICC line in the evenings and that is pretty much it as for now. 
My goal is now, to get him well enough and strong enough to where he can walk for a little bit longer every other day. Slowly we will build it up. Aj is still eating well - Breakfast, snack, lunch, juices and smoothies. 
I have already figured that I need to stick to the book they gave with recipes (for the juicer), the two times I did it free style, Aj couldn't drink them - hahahha I actually liked them but he was like.. OMG! hahha
The Juicer is amazing - everything goes in and a favorite of mine is, strawberries, banana, ice, spinach and soy milk. Its Yummy!!! There are so many good ones :) 

New Hair Style

Not much to report today, Aj got the clippers out and cut his hair off. Girls didn't mind at all, I told them on the way home and they didn't even react when we got home, which was good.
We didn't go for a longer walk today, its been raining and muggy.
Aj says that he can feel the PICC line and its annoying, I can only imagine. Unless we can hope for some miracle that they do it in Houston, then I think we have to wait another week before they do the port. Seton is supposed to call me to schedule it. I will call them Monday if I haven't heard anything.
He sweated more than ever last night, first we thought maybe it was due to new sleep meds - Restoril, but I looked up the side effects and it has about 15 of them, but not one says sweating. Lymphoma does though, so its probably that. Its kind of a weird holding place right now, he has had the Chemo and his whites have gone down and we are just kind of trying to figure out every day if that is the worst he is going to feel in the whole cycle. But we will learn with time what ups and downs in this procedure is.

Oh, I went to the school this morning and I met two cancer survivors. Since the school - Trinity is fairly small everyone knows everyone and most Kinder mums knows what is going on. One Jen Davis (who's sister in law Laura helped us into T and Laura is a survivor too!) Anyway, Jen introduced me to a lady called JeanMarie and she said that her husband is a universal blood donor - he has this 'universal' blood cat. 0 positive. I don't actually know what Aj is but will find out on Monday- just to know. JM emailed me tonight and said that her husband is offering to be a donor if need be, he said just tell me when and where. - I know that Aj is going to probably use his own bone marrow and if not that probably Oliver's, but I didn't want to get into that discussion with her and just kind of went with the flow and said thank you. (I've learnt to do that, it saves time :) and I don't offend anyone)  Still what touches me into the spine is that a complete stranger emails me hours after meeting and says just tell me when and where and I'll be your bone marrow donor. I thought that was so touching...  I had goose bumps. Trinity has honestly been our blessing in the sky, they bring dinners Mo - Wed - Fri and today I went to pick up Chloe and there was a full meal plus another mom had done some grocery shopping and a whole bag full of little good things. Also they are all concerned and pay extra attention (secretly) to Chloe to make sure she is ok and they report back to me. Its just an amazing family to have here in Austin... I am almost a little overwhelmed with the help and support we are getting, I feel like I don't know how to thank them enough.

Still no fever in sight - 97.9 tonight - not sure I mentioned yesterday his weight was 153lbs.

Not a lot to update today, still one day at the time and I think these in between days there just isn't going to be a whole lot of new info. Very cool that I can upload the videos very easily from my iPhone :). There will be more of those!!

I have about 6 books to read so I am going to do that now.

New hair style!

Fugitive

Ok, first of all - if you wonder what the title is? When I don't know what to put, I just put the name of the movie that is on TV :)

Sooo... shortly after the photo I took of Aj in the waiting room, we went in to see the nurse and change the dressing on the picc line and do lab works.Well, about 5 minutes in to our visit I notice that Aj is turning grey and swaying from side to side on the table while the nurse is changing his dressing. I asked him if he was ok and told the nurse right away that I thought he might fall off the table. So she went and got some IV Saline while I stood next to him. After 10 min and some ml Saline later he was doing great.
It was most likely due to dehydration, he has a little bit harder to drink water now, says it tastes like metal. I am trying to think what I can flavor it with... lemon is citrus and not good, cucumber - he doesn't like... hmmm, we'll see. :)
The nurse Lisa is one of the nicest nurses we have met. I really think we have hit the Jackpot when it comes to Doctors and nurses lately. They are so fantastic and really takes their time to explain everything. Now.... if that is because Aj is cute and they want to hang around him longer - I don't know and I don't care - they answer all my questions!! :) :)
Aj's wbc has hit the lowest today at 1.1 ( I will post a picture of the print out tomorrow) which is expected from the chemo. He had his last Neupogen shot in the hospital 2 days ago, and Dr. H told us later that Neupogen only lasts for two days, that is why they have to administer it often. She likes to use Neulasta instead, that lasts for 2 weeks. So he got that shot today and will have the next one the day after his next chemo. you shouldn't have it less than 24 hrs after your chemo.

Aj will go to Seton hospital again for a short procedure to put in the port catheter in so that he doesn't have to have the picc line dangling from his arm anymore. There was a lady called Pat that had colon cancer who came up and showed us hers. She had such a good spirit and answered quite a few of our questions. She got cancer in 2006 and beat it back then, unfortunately it came back a few months back and now she is doing chemo again. Her treatment is completely different though, she comes in for chemo in the infusion room lets say monday ( a large room with about 25 stations = recliners with IV stand) sits there for a while, then she leaves with her bag attached to her port and leaves it there all day Tuesday and then on Wednesday she goes back to office sits in infusion room for a bit and then she can leave, this happens every two weeks.
She was so positive and sweet, she said if she could beat it once she could beat it twice! Also she said its more important to concentrate in healing and being happy than anything else.

Dr.H told us that they will do another bone marrow biopsy after the second treatment. To make sure they know what the hystiocytes are doing. They can pretty much tell by the fever being gone that the Chemo is working on the Lymphoma. I am so happy to hear that, both that they are doing a biopsy and of course that the Chemo is working. The next Chemo is beginning of March and he will have the port inserted the day before so he is still connected and only has to attache the tubes for chemo. The port area can be a little sore afterwards and it would probably hurt a bit to put the needle in. so if they do chemo within 24 hours of inserting it, they have a needle there already. As soon as we heard about pain when inserting the needle, I looked at Lisa and said - we will need that numbing cream too!
Back to the pharmacy again - we got:
Lidocaine 2.5% and Prilocaine 2.5% cream to numb skin for Chemo needle
Restaril - sleeping pill that will keep him sleeping rather than just help him fall asleep like the Ambien.

When we go to Houston Dr. H wants us to ask the doctors if they think we are on the right path with CHOP or if they want to alter the protocol to something else.
Also - IF they want to do a transplant, when would they like to do it, after 2nd treatment or wait until later maybe even after treatment is finished, I guess we will find out soon. His blood has to be 'good' enough to be 'good' enough to do it. I hope that when we leave Houston we will know what is going to happen and how for the next 5 months.
Are they changing protocol?
If so, can Aj still get treatment in Austin? (they can order protocols)
Transplant, yes or no, if yes - when?
And a whole bunch more....

I told the girls about Pappa having low wbc today and that the doctor had asked if we could make sure we wouldn't bring any germs in to the house. They were so happy to help and jumped in the bath right after school. It was like they felt very important, when I told them the doctor had asked them to do it, very cute. :) :) They are being very good with understanding that Aj is sick and we can't kiss his face. They do give him hugs and cuddles! Lisa told us that we can't live in a bubble and that we have to let the kids touch Aj. They have a little bit more relaxed attitude than Seton, which is nice but like Lisa said also, you just have to use common sense and everything in moderation. sounds good to me!!!

I think Aj took a Restaril pill, because he is SOUND ASLEEP right now and he is breathing very heavy, I hope he can get a whole night's sleep. That would just be heaven.
On that note... I am going to sleep too...

This is the Port Cath that will put in next week or the following.
It's a lot more sanitary and comfortable than the Picc line. It won't
show from the outside and when he comes for chemo they put a needle
through his skin onto the little port. When he's done they take it out
and he's good to go.

In dr. H's Office for the first check up since we left hospital. He
couldn't sleep much last night due to big buggers, going to ask them
about that. I gave him saline spray and humidifier but didn't do the
trick. It's not a cold- you know just when you have gunk in there.
Other than that, he went for a walk down on the street last night. It
was cute because all the girls came with us. He is eating well, I am
going to get the email to the wife of a builder friend of ours, she
had a brain tumor 2 years ago and is now doing the diet I want to do
for Adrian. No sugar no dairy and so on. I also think we will see a
nutritionist in Houston.

Home

We woke up to the lovely sound of nurses coming in and out of the room as usual. Dr H came in and was her warm loving old self. :) I do really like her, she is funny. She wasn't feeling good so she put on a mask and Aj wasn't late to do the same.
She told us that he cold go home this afternoon or as soon as she could get Dr. Brown to sign the release form. We are going to her office on Thursday to do lab works and change the gauze on the pick line. Houston should call us in the next couple of days to schedule our visit - which they did and we are going on Monday, have to be there at 11 am.
After that I got a crash course in picc line flushing :)
Gloves on
Alcohol wipe around the lumen for 20 secs
Unscrew the top of the syringe and press so the air bubble disappear
Pop it in the picc line clip (or what you call it) and screw it in to attach
Put in 1 ml into the picc line and then draw back so you see blood come back (to know its not clogged)
Then its just to push it all in there!
I'm going to do 3 ml of HEP lock flush in each picc line once a day.

Before the next treatment in 1.5 weeks Dr. H will do an in office procedure where she will put a small incision in his chest and put an IV from there to close to the heart. Then when he has his Chemo, they will put a needle through his skin and do the IV/picc line that way instead. Then we don't have to worry about the infection risk that we have now.  Plus he can take showers like normal without having to wrap it up and worry about getting it wet.

I asked if she thought that the rigors would come back, since today was his last day of steroids. But she said that all his labs look great, liver enzyme had gone down and white blood cell count still looks good at 9.2 today. So that is proof of that Chemo is working and that should make the fever go away.
Just before she left she gave me the prescriptions for Aj, there were only about 6 things to pick up. :)

Then it was time go get Aj home! Very exciting to even think that he is coming out of that concrete room and the nasty gown. No more hoses or pipes around him.
We came home and he had lunch outside and then it was time to set up the 'home hospital' in the bedroom.

Went up to Dr. H's office to pick up the prescriptions which are:

HEPARIN Lock Flush 100u/ml
ONDANSETRON ODT  8 mg (Sub for ZOFRAN) for nausea
VALACYCLOVIR 500 mg (sub for Valtrex) for infections to prevent canker sores in mouth
CIPROFLOXACIN HCL TA 500 mg (sub for CIPRO) antibiotics for bacterial infections
FLUCONAZOLE 200 mg  (sub for DIFLUCAN) for fungal infections
TRIPLE MIX (mouth wash if he gets canker sores)

He has to take the 2 antibiotic pills and Valacyclovir  every day for as long as his treatment goes on basically. So it will be 3 pills in the morning and 1 pill in the evening.

I have so many books to read and so much info to soak in to get everything down to where its just the norm. But I will get there soon and then its rock on! We are going to kill these cancer cells with chemo, oxygen and lots of healthy cancer killing food!
Tonight I made a shake of: spinach, carrots, apples, orange, pineapple, grapes and ice and believe it or not - its was sooo good!

time for bed... my bed.... that doesn't move when I move!

Home!

Going home today!

Sent from my iPhone

Catia James

Feb 15, 2010 04.10 am

President's Day 2010

We woke up around 7.30 when Dr. Hellerstedt entered the room. I know that they were in here during the night and did blood works again and I can tell Aj sweated last night again, because there were sheets and a gown on the floor. :)
She told us that he is exactly where she wants him to be in terms of how his body has responded to chemo. That sounds great to me!
His liver level/enzymes has gone down which is also a respond to chemo and his whites are up, will post the exact numbers when I get them from the nurse. Dr. Hellerstedt said that she will work on getting him home, its better that he recovers from home than in the hospital. She said that there are less germs than in the hospital and you can find some weird ones here too.
Then the plan is to get him home, keep recovering and Dr. H will monitor him in her office instead. Then in the next week or so - we will go to Houston to have him examined. They want to make sure they are giving him the right treatment and IN CASE he needs a bone marrow transplant in the future, they want to start planning that ahead of time.

Yesterday Fabby, Tommy and I went to Whole Foods and got the VitaMixer 5200 - its going to help us eat A LOT of veggies and fruits to help fight the cancer cells. Shakes, juices, smoothies, soups - you name it - I am going to make it.

Adrian sweated quite a bit last night. At 3 am Karla came in to do the
blood works, which later showed his WBC had gone up to a whopping
10.3! Thanks to the injection he's getting and the steroids he's on.
The steroids are also helping to keep fever away, got to wait and see
if it comes back when he gets off them.
Dr. Uyek came by this afternoon and he said it's not likely that he
would get the fever back. I would hate for those rigors to come back...

After lunch AJ took a shower, bless him, he's sooo weak. But he's a
champ and tries his heart out to do things. Then we all went for a
walk downstairs - AJ in a wheelchair. Outside was gorgeous and Aj
walked for about 20 min, we are not talking power walking but he did
so well. Then we went back upstairs and he went to sleep.

I hope that tomorrow will bring more medical info, Dr. Hellerstedt is
back and it would be lovely to find out if we can go to Houston this
week. I just want to be sure that they feel like they are giving the
right chemo and if they want to change it, rather it happens now than
in a few months.

It is Valentines Day too, so I decorated the room with pictures of the
girls and lots of drawings they've made. Better than dull hospital
walls!

Sent from my iPhone

Catia James

Gladiator

Aj was really sleepy this morning and has been feeling a little bit groggy. Not strange due to all the drugs that are in his body on top of the chemo.
His white blood cell count went up tonight after he got a shot to boost them. It went from a 2  to 6.5, the nurse said that I would probably have like an 8. But the 6.5 is a false number that will go down. They are going to keep giving him the injection every day until its stabilizes. It will not boost his palliate or red blood cell count so its still very likely that he will still need a blood transfusion. I have to ask the nurse who is Karla how that is done.

One little stupid episode of rigors came this afternoon, it was short and Aj got valium that made it stop really quick and then he had a little bit of fever, but that is it.
Tonight he is just feeling a little bit weak, who wouldn't after laying in bed for 3 weeks!!!

He will stay in hospital until his white blood cell count goes down (as a reaction of the chemo) and then starts going back up again. That is reassuring that they are not in a hurry to sign him out and send him home.
Tommy arrived tonight, it was so good to see him and that he got to see Aj. Tomorrow my mum and dad will arrive in the afternoon.

The morning after

The night went so smooth, no rigors (YEAH!!) He did sweat a ton so at 4 am we changed his gown and sheets. Aj felt a little little nausea and got some medication in the IV for it. So he slept from midnight until 4 am. Then roughly from 4.30 - 7.30 am. That is probably the longest night of sleep that he has had in a long time.
One of Hellerstedt's associates Dr James Uyeki came and saw us this morning. Asked Aj if he felt nausea, rash, fever - all the normal questions which all were answered no. His vitals looks good the white blood cell count has gone up .3 which is not a lot but still better than yesterday.

I asked Dr. Uyeki about the road ahead of us, what when and so on. He said that through labs and looking at Aj's fever they can pretty much tell how the lymphoma is responding to the chemo. Aj is expected to feel worse before it gets better, but doesn't have to be. Then we will probably go down to Houston - MD Anderson in the near future, next few weeks. They will look at him there decide if they want him to stay on Chops which he can do in Austin. Or if Aj would receive some other or additional treatment and he would be in Houston.
Baby steps, one at the time. Just time will tell now what the next step is.

We got Laura back our favorite nurse!!! I like her the best because she takes her time to answer questions and totally keeps us in the loop of what is going on.

The journey has started!

Its 2.57 pm and the Chemotherapy has just started. Wow this is emotional for me, to see Aj hooked up to a bag that says chemo on it. Its the cure right there in this bag - crazy!
He has one bag of IV called Cyclophosphamide and then he got two injections in his pick line. These are the drugs that make up CHOP.
Laura also gave him Narco and Demerrol because he started shaking 15 min before he was going to start. The shaking stopped and I am hoping he is taking another nap right now. 
Baby.. I love you so...
We have the sweetest nurse Laura who is telling us a lot of information about the treatment and everything around it. She has given me a huge folder kind of with lots and lots of info about cancer and treatment and it will help me keep track of all his papers and so on.

Day of new beginnings and starting the road to recovery!

Today we are waiting for the Chemo to start. They were supposed to come and do it first thing in the morning, but Aj has some fluids in his lunges and given full dose could increase the risk of pheumonia so they were debating if he should have half dose or whole dose. Dr. Beth Helerstedt is recommending full dose since he is so young that its the best for the treatment.
Its noon and the nurse Laura just came in to give Aj some valium to suppress the rigors - he is sleeping now, hopefully for a while.
She said that the pharmacy are mixing up the full dose, so I guess sooner rather than later, we will have completed the first dose of treatment.
Definitely a lot to digest that Aj is having chemo, but its the cure and it will take care of business so bring it on!
His white blood cell count is almost at a critical level today, not good at all and they are keeping a close eye on that. The red are not as low. The whites are : 1.6  - normal being 6 - 10 (!!!)

Aj has been weak since yesterday, seemed like it took the little energy he had out of him when they kept him waiting for the bone scan and he couldn't eat or drink for a long time plus that he has some really bad rigors periods. They are now giving valium when he gets them and it almost seems like if we get it early enough before the rigors really break out - it controls it.

 

Back Tracking...

Trying to back track to start off with to have a beginning to this story...

Dec. 25 - 26 We go to San Antonio Resort - Hyatt Hill Country. Adrian takes the girls in the pool, gets water up in nose that he says built up a tremendous pressure.

Dec. 27 Aj went to Westlake Er for sinus pain, got prescribed Cefnidir for 10 days.

Dec. 31 We had a party at home with friends, Adrian's back was hurting really bad - he had a hard time to sit down.

Now if this had something to do with the lymphoma, I don't know but that is as far as we have been back tracking.

From now on, its off road...

Jan. 20

Adrian was in Miami and called and said he started feeling pretty sick. Just in general really bad.

Jan. 21

About 2 am (in Miami) Adrian got the chills which we later got a name for RIGORS. This is a fierce way to get the body to up its temperature and create a fever. Its harsh on the body beyond means. He gets home and basically goes right to bed.

Jan. 23

Getting worse through out the day, in the evening its really bad. Rigors and fever. Temperatures goes up to 104. Very scary and we end up going to Seton ER.

They do a chest xray which shows out to be ok, his white blood cell count was low. They discharge him and we are told to follow up with an infectious disease doctor in 2-5 days.

Jan. 26

Adrian drives himself to Dr. Evans (infectious disease doctor) He was told to stop the Levequin (antibiotics) it could do more harm than good since Adrian we feeling somewhat ok. Dr. Evans said it was possibly Viral Meningitis.

Jan. 27

Symptoms came back and got worse by the hour. From the morning to the evening super bad rigors and fevers and he is in so much pain and discomfort.

Jan. 28

Bad rigors throughout the night. Early morning it seemed to get worse around 3-4 am. When I wake up to take the girls to school, he comes out in the kitchen and says he has chest pains and can't take a deep breath.

We go to Seton Central ER. They didn't waste any time to get him hooked up to IV and did a bunch of tests. EKG, CET scan, ultra sound and A LOT of blood works.

The tests show that some tissue around his heart had died. Got admitted to Seton. The cardiologist said that he was not alarmed by anything he saw, but wanted to monitor him.

Jan. 29

Hospital

Jan. 30

Stress test on heart, chest xray all came back normal. Diagnosed with myocarditis which doesn't show on the xrays.

Jan. 31

Hospital, blood tests

Feb. 1

Released as all the heart tests comes back normal. Still having rigors really bad. Dr. Bagwell comes to see us in hospital. He is an infectious disease specialist. He took blood tests and told us to come to his office next Tuesday to look at more blood.

Aj got released and came home.

Olivia's birthday party.

He got worse again in the evening and had rigors between 12pm - 5 am.

Feb. 2

Started taking tylenol & ibuprofen every four hours at the same time. No rigors during the day at all - came during night.

Feb. 3

Felt like crap. Went to Pathology center and did blood works ordered by Dr. Bagwell. High fever in the evening.

Feb. 4

Back to Dr. Bagwell. The blood test came back fine except from that the liver enzymes were high. So he told Adrian to stop taking the Tylenol completely.

Prescribed steroids (methylprednisolone) to take as a 6 days course. He should feel better the first few days and then it will wear off.


Feb. 5
Somewhat ok in the morning, 2 hour episode of rigors at 2 pm. 
I have had the idea of Lyme disease and Dr Bagwell didn't feel it was necessary to do a test and that made me mad. So we went to Dr. Vik to ask if he would do a test. He could clearly tell he was very sick and said that the tests are not very accurate so he was just going to put him on the medicine anyway. Doxycycl - 2 per day for 21 days. It should clear up Lyme and a bunch of wierd things that he might have. Its a shot in the dark but worth a try. 


Feb. 6
1 - 4 am rigors really bad and at 5.30 he broke out in a high fever. At 9.30 he wakes up with pain in the back of his head, its like a lump that feels like the bone and its bigger on the left hand side. Very sore to touch.
11.30 am Getting rigors again 
Afternoon, we get the girls over to Moshers and then head for ER at Seton. He sees Dr. Siegefoos - internal medicine for the first time. Admitted to hospital. They say that it is strange that his fever has now been for almost three weeks and not given a break. Finally they start doing A LOT of tests.


Feb. 7
Fever chills and rigors throughout the day. Dr. Siegefoos called me early in the morning to let me know that nothing has come up on the blood works. But he says that he will keep on testing for anything that can give fever. 
Infectious Disease doctor Matt Robinson came to see us. No news or ideas. thought he should get chest xray and check out Aj's heart again. 


Feb. 8
Bone marrow biopsy - This is the best day as of yet. Aj got some pretty strong meds for the biopsy and is feeling great plus he had a 12 hour break from rigors. Of course the stubborn shit decides to come back in the evening and he as a bad episode. 


Feb. 9 
Bone marrow scan - he has to drink this fluid/dye and then wait for about 5 hours so that it goes out in the bones and then they can scan and I guess look for tumors I read somewhere. Fabby and I arrive in the afternoon with the kids and then I come back in the evening. I sleep so much better when I am next to him. Just want to make sure he is as comfortable as possible. 
I ask him what they have found and he says something suspicious in the bone marrow. Not sure what it is it will take a more test.


Feb. 10
Probably the most horrible day in my whole life. I left the hospital early morning to go home and get the kids ready for school and pick up Olivia and Fabby to come back to the hospital. 
We arrive and a few minutes afterwards Dr. Sigefoos walks in and says: so we need to discuss what to do next as of your treatment. Adrian tells him that he hasn't told us and Dr. S asks if he wants him to do it. 
He explains that Aj has something called Hemophagoutptic Syndrome. A disease that is eating up blood cells good and bad and basically not recognizing his organs as his own. I found out later that the cure rate for this disease is about 20% (!!!) I think there was a reason for them not to share that with me right away. 
Dr S, was very upfront with us and made himself available to us afterwards. He said that Aj would get a bone marrow transplant and possibly from Oliver. It would be a risk in that but he should be fine since he is young and strong. He also said that he could die from this disease.... my world fell apart....


Later on in the evening when I come back to the hospital, Adrian has spoken to Dr. Beth Helerstedt and she had sent his lab works to Houston - MD Anderson Clinic, they suggested that he had Anaplastic large cell lymphoma with hystiocytes. That is a much better diagnosis that can be cures with chemo and he just might need a transplant. So that is the better one of the two bad ones and they will reconfirm the next day.


Feb. 11
The diagnos comes back as Anaplastic large cell lymphoma with hystiocytes. Its cancer. 
Wow... deep breath, I don't know if I can even say cancer and Aj in the same sentence... Never in my wildest dream would I believe that it was something as serious as this. I mean talk about kicking someone when they are down...
Aj gets moved up to 7th floor of hospital with is the Chemo floor - still can't believe this... he is scheduled to get a pick line, which is an IV that goes further in to the body. they can draw blood and do the chemo through that one.
The pick line cans stay in for months and it goes through a bigger vein. The normal IV's goes through small veins and they would not be able to hold up against chemo. 
I arrive in the earlish evening and he has the pick line installed already - they have confirmed the position of it with x ray. 
Dr Helerstedt comes up and talks to us for about an hour. It was information overload, or more a lot of information that makes you overwhelmed. 
She tells us that he can do chemo here in Austin, its called CHOP and that the cure rate for this type of lymphoma (that of course has to be a rare one) is 70-80% with just chemo. If he does a bone marrow transplant from himself - washes his blood out and then wipes out bone marrow and replaces with his own good one, it would increase the cure rate with another 15%!! That would make it up to 85-95%!!! 
He will have to go to MD Anderson at some point, for them to look at him since its a little bit of unique case. 
They are not sure how the hystiocytes are going to react to the chemo or how out of hand they are just yet. The bone scan should reveal that and she hadn't seen them when she was here. 


They will start chemo and then his blood cell count will go down even more and he will feel worse. it will kill both good and bad, the good ones will reproduce the bad ones will shrink. His immune system will be pretty much none so I am now worried about infections and pneumonia which could be so bad in this recovery period.

I will no longer bring the kids to the hospital and mum and dad are coming in on Sunday afternoon so they can play with them instead.

Aj will lose his hair about 2 weeks into treatment, all over his body. Other side effects are

nausea that he gets pills for, taste buds will not work properly and he will not taste food like normal.
The list is long of things and info and I will come back and update