The whole street is getting ready for Halloween tomorrow - all the kids are so excited!! Olivia got to wear her costume yesterday in school and she was so proud. We should have 5 girls in the cheer leading squad. It is Sienna's friend Story, her auntie from Dallas sent the dresses. Soooo sweet! I wish she could have been here to see them!
A cold front came in yesterday too so keeping fingers crossed this is it this time. I want the COLD to stay!! Mind you I am looking outside and the kids are in shorts and t-shirt... so maybe it was short lived.
We got a package from transplant team with information for me to read. I have to admit, it feels a little surreal... that it is so soon! When they first told us it seemed so far in the future, but it could potentially only be a couple of months away.
Cross your fingers that we will have a plan on Wednesday!!!
Adrian is feeling great and looking great!! Ready for a trip out in the wilderness tomorrow!! He is taking Sienna & Olivia to our friend's ranch for a night.
As you notice, when I don't write every day, he is doing well :)
He went for a check up today and it was fine, they didn't even do blood work on him. Next week is the re staging and then meet with Dr. Alousi. Following week meeting with Dr. Fayad.
I am hoping that we will come back from Houston with the plan of the next few months. But, as it has showed in the past, not always you get what you wish for!!
My dear dear friend Annelie is coming into town tomorrow night (from Sweden) and she is going to stay with us until next weekend, when her visit overlaps with my parents coming in! Double joy!!! Annelie will earn her keep by taking care of the kiddos next week when we go to Houston. :) :)
It has been a super busy week, Jason and Jayden were here, birthday parties, play dates and all the rest!
We are all doing great, Adrian has had a good week, completely back to normal.
Working away with Jason like crazy.
In the beginning, in the spring, I used to tell him to stop working and rest and take it easy. Now I leave it up to him to feel how much he can cope with. I think working for him is the anti venom for chemo. It keeps his mind off it and we all know he is a WORKAHOLIC. Can't change that :)
It will be a little longer between the chemo cycles this time (second and third). We are going down to Houston for just a day to do the re-staging (PET, CT & Bone marrow biopsy). Then I hope we will find out the course of how it will all come together. Harvesting of stem cells, admitted to hospital and the actual transplant.
The fourth round of chemo will be in the hospital, if I have understood things right. Not sure if it will be ICE or something else. I have a feeling it will be something a lot stronger since they have to get him down to zero immune system. That is why he will be admitted one week before the transplant takes place.
Michelle, Dr. Alousi's transplant coordinator called this week. She said when she did the wide search on donors she found 70 possible ones. Out of them, they will pick out 5-6 who they will ask to do a blood test and then see how close of a match they are. Basically they look at the ones that have done like the swab test that I did and then they have to look closer and closer.
The ultimate match is a 10/10, sometimes they can even use a 9/10 or an 8/10 depending on what does not match. They will look for someone who matches Adrian's HLA tissue type. HLA stands for human leukocyte antigen, a marker your immune system uses to recognize which cells belong in your body and which do not.
I am not that knowledgeable about this - YET!! It is the next level in the quick nurse degree that I have received while reading about cancer and asking questions. :) :) I think I should qualify for a PhD before the end of the year!
He went and did labs today and his WBC is a whopping 10!!! That means that the Neulasta has worked and he has had no bone ache!!!!! Great news!
I was thinking maybe he would start feeling bad towards the end of the week, like last time. But no!!
It has already worked and he is doing great! I am so happy!!!!
Great day today!
It always feels easier to breather when things are looking better!
Adrian has been in the office all day pretty much, working away, phone calls etc. He is feeling pretty good. Almost scary how quick it turns. But, I don't have any complains at all, when it turns for the better!
He's staying away from crowds and kids this week since his WBC is dropping. Weird really, that when his WBC is low, he feels pretty good. WBC goes down when he start gaining strength. Let us hope that the Neulasta side effects won't be as bad this week. (knock knock on wood)
Also what I have noticed, this time around, even though ICE is a much 'harder' chemo than Chop. Adrian is looking a lot healthier. If you didn't know that he had cancer, you would not be able to tell, at all. He's lucky he is so handsome that he can pull this bald hairstyle off!! The hair on his arms are falling out, slowly. But eyelashes and eyebrows are still there like normal.
Girls are really excited as Jason and Jayden are coming to visit tomorrow. We talked on Skype with Jayden (who is 2) and he shouted in the microphone "I am coming down!!".
He is one of the cutest kids I have seen, for sure there will be a bunch of pictures on the blog of him and the girls. Baby O will stay home from school so she can play with her new buddy. Plus the girls adore Jason, so it should be a fun week!!!
Adrian has been up and about today. Slowly but surely gaining more strength. I went over to a friend's house with the kids this afternoon and I got a text that he was out driving!!!!
He had gone to have his tire fixed on his car and then going to HEB for sushi!
I was pretty stunned and started thinking if this could be delayed reaction of the Carboplatin and that he had no clue what he was doing?? But Carboplatin side effects should be within 24 hours... so I wrote that off.
I called him and he was doing just fine... :) I was just getting worked up for nothing. He said he started getting cabin fever of sitting it when the weather is so nice outside. Btw, it really is gorgeous this time of the year here in Austin. I totally get him, I would go a little bit bonkers too!
Today he has been in and out of naps all day long. Mostly asleep. He is feeling like last time - Toxic.
Chemo, Chemo, chemo.... it is a love and hate relationship. Love might be a bit enthusiastic to say, more like "have no choice & hate relationship".
Went back to the infusion room for fluids to help flush the toxins out and after that, the famous Neulasta shot.
Again, I can't tell you how blessed we are with the nurses at Texas Oncology. They are absolutely amazing, so sweet, so nice. I can't praise them enough. They are angels without wings!
Thank you! We received your completed registration kit. Your part of the registration process to join the Be The Match Registry® is complete.
We will test the samples from your kit and add your information to the registry. It usually takes about 6 weeks to test your samples and add you to the registry.
We'll let you know when your registration is complete. In the meantime, if you have questions, please e-mail us at join_now@nmdp.org. Please include your donor center number -- xxxx -- and donor record number -- xxxxxxxx -- when contacting us.
Again, thank you for giving patients hope. By joining the registry, you have taken the first step to potentially save a life.
Gratefully,
Be The Match
Be The Match Registry operated by the National Marrow Donor Program®
3001 Broadway St. N.E., Suite 100, Minneapolis, MN 55413-1753
1 (800) 654-1247 www.BeTheMatch.orgPrivacy Policy 11757 APR 2009 127 161474
Back in the infusion room today, he was feeling a bit crappy this morning when he woke up. Still has a really good appetite. You guys should have seen the damage he did on the pizza tonight!!! (pizza was his own request btw)
The same size pizza fed three kids yesterday and there were pieces left.... tonight, same size for Aj - about 3 little squares left! I think its great though, that he is able to eat like he does.
During the chemo today he said he could feel it more and more. This afternoon I was convinced that he would take a 20 hour hibernation nap again, but no. He's been awake and nodding off here and there, but been pretty good if I compare to last time on day 3.
Tomorrow its Neulasta shot, nasty nasty little thing... That is the shot that made him in so much pain last time. (the office visit when he was really high) Since it takes a few days for that to kick in, we have to wait until next week and see how he will feel. But we are prepared with drugs.
If you haven't already read the article that I posted in the earlier post, do it. I think the writer has written it really well. He says that chemo is like slow drying cement filling up your body, pretty much sums up how Adrian feels about it too.
After the treatment was done today and we got in the car, he said "just can't believe this is how they treat people". I don't think anyone who has not had chemo can even imagine what it is like.
I think the CIA and the U.S Intelligence Service should skip the waterboarding that they used to do and just give their prisoners a double dose of chemo. Anyone would be talking after that. And preferably, don't give them any nausea medicine. Maybe tie a ginger chew on a string in front of them, but of course not so they can reach it. Plus, if they need some more ammo, a huge Neulasta shot!
For the ones who are wondering, Nanny McPhee's tooth fell out that very same night. Yesterday morning when I woke her up, she had it in her hand. :)
This morning she came down and looked a little gloomy and told me that the Tooth Fairy hadn't been there. "I went to sleep and everything, she said". (first tooth she lost, she was going to stay awake all night so that she could see the Fairy, I told her then that the Fairy only comes when kids are sleeping)
My heart sank, I totally forgot last night to put a coin in the glass!!!!!! Quick, I had to think of something!! I told Chloe that the Tooth Fairy had sent me an email saying that she had been extremely busy last night, but she would make it tonight. Chloe did a funny face, looked at me and says:
"Does the Tooth Fairy have a computer????"
"Ehhhhhh, OF COURSE she does!!!" I yelped, trying not to laugh.
Chloe took that answer and that was it...... I thought.
This afternoon, we told our neighbor's how busy the Fairy had been and that she was going to come tonight instead. Then the question came...
"Can I see the email from the Tooth Fairy??"
I looked at Kelli and then back at Chloe, "Well, I would have showed it to you, but I erased it"
Chloe looked at me and goes, "If you don't show it to me, that means you are lying"
TOO SMART!!! But she didn't say anything else and that was the end of it!
Last time on day three he was out of it the whole day. So today is a bit better, but he days he can feel it more and more. Expecting him to take a looong nap this afternoon.
We found out yesterday that his brother Oliver is not a match. They will start looking in the directory for a donor. It really is a bummer, but we knew it was only a 25% chance that he would have been a match.
I haven't written much lately as he has done really well. This is the 'good' period right before the next treatment. Which will start tomorrow. Back to TO for ICE.
Adrian did a PET scan last week to see how the cancer had reacted to the chemo. You can't see what is going on in the bone marrow on that one but at least the lymph nodes. They were happy to tell us that the PET was negative. This means that they can't see Lymphoma in his lymph nodes. Which means that he is still chemo sensitive and that is a really good thing. :)
We won't find out about the bone marrow until another bone marrow biopsy has been done and I think that will be in early November.
Still, even if the chemo is working like a charm, this will not change their plan of transplant. I am just hoping that this means that he will for sure be able to do the transplant with his own stem cells.
His hair is now falling out more, so he did a close shave tonight. He said when the short hair catches on the pillows it hurts his head. So now his head is smoother than Olivia's butt!
Tomorrow will be the 'easiest' day of the ICE days, Wednesday/Thursday is when he will start feeling crap again. At least this time we know what to expect.
After I came back from being out this morning, I met Adrian in the doorway - with NO hair! It had started falling out so he shaved his head. We had talked about doing it, same as last time. When the hair start to fall out, just shave it off. That is what he did.
He is one of these lucky people who looks great no matter how long or short hair he has. The girls are used to it as well, since he normally shaves it in the summers anyway.
So, yesterday we went to see Dr. H and also do labs and everything is looking good on the lab report. The LHD level was a little low but she said he could take fish/flax seed oil and that should improve. The platelets, RBC and WBC were all looking a lot better than Friday.
He is still feeling ok, but has had a head ache all day today.
I have to say, I think that Dr. H is an amazing doctor. She is the no BS doctor who will tell you what is going on without any frills. Very cut and dry but in a lovable way, great sense of humor!
First few times we met her, when Aj was in hospital, she would walk in - without saying hello, start talking about cancer and what not. Then just as quick just walk out the door and poof she was gone! We used to giggle about it, but both agreed that she was very cool.
You know when you feel that you are just another number when you go to see the doctor.. I do not feel like that with her at all. She gives me a sense of calm and I trust her. Don't think I can praise her enough!
Yesterday, we were in the room talking to her about various things and then we walked out in the hall way and she gave us both a big hug, a group hug. :) I heard someone saying ' love you' while walking by and then we said good bye to Dr. H and started walking out.
Adrian and I were quiet walking out and after a while Adrian says: I think I just told Dr. H that I love her!!!!!!
(good God I am laughing as I am writing this - it was just so funny)
I burst out laughing so loud and I even cried from laughing so much. I thought I had heard SOMEONE walking by saying it, not that Adrian was whispering it in Dr. H's ear as we are having a group hug!!!
HAHAHAHAH! Too funny!!!
In the afternoon we were joking and tried to come up with what Adrian will tell her he was supposed to say.
"I love you, because you look after me"
"I love you, because you are my doctor"
"I love you, because you are .... yes what!!???
What is a good ending to that beginning?? :)
Adrian is ending up being quite funny when he goes to the doctor's office or hospital, farting and telling them he loves them. Talk about free spirit!!
