Home ("If Winter Comes" No. 8)

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 did the same.

She told us that he could 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!

"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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