Absorbing the Reality ("If Winter Comes" No. 3)

sunset by john nyboer

The diagnosis has come back as Anaplastic Large Cell Lymphoma with hystiocytes. It's 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 was moved up to 7th floor of the hospital, 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 can stay in for months and it goes through a bigger vein. The normal IV goes through small veins and they would not be able to hold up against chemotherapy

I arrived 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 nothing 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.

"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: He was diagnosed with a rare subtype of T-cell non-Hodgkin's lymphoma known as Anaplastic Large Cell Lymphoma (ALK+) at the age of 32.

Photo by John Nyboer

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