Fugitive ("If Winter Comes" No. 9)

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 about 5 minutes in to our last office 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, it's harder for him 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. :)

This 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 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 there 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 the nurse 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
  • Restoril - 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! The nurse 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 she said also, you just have to use common sense and everything in moderation.

Sounds good to me!!!

"If Winter Comes," A blog about anaplastic large cell lymphoma"

This blog follows the journey undertaken by my husband, by me, and by our family as my husband battles a disease we never saw coming: Recently he was diagnosed with a rare subtype of T-cell non-Hodgkin's lymphoma known as Anaplastic Large Cell Lymphoma ALK+. He is only 32 years old.

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