July 2, 2011

Kassidy's port/catheter, Only 2 small little holes.

Day 1, first infusion and waiting for allergic reaction.

All of us must wear the face mask while cleaning her port/catheter not to contaminate the area.

Yesterday started very early at 5:30 in the morning, we wanted to make sure we got through morning traffic in Houston and get to the clinic early for her surgery.  We were taken back around 9:45 to get Kassidy ready for her procedure by starting an IV to get her started on saline and antibiotics.  I asked the doctor to give her something to relax her nerves, which after the nurse had given her liquid valium, Kassidy then pointed out that I was really the one nervous not her.  The medication hit almost immediately which caused her to start giggling uncontrollably and she could not enunciate her words.  Pretty funny!  We could not stop laughing and Ryan recorded her on his iphone. I know kinda mean! But it broke the thick air of nervousness that was lingering minutes before. 

The procedure only took 40 minutes which we thought was pretty quick.  Doctors then did an xray to make sure the line was placed correctly in the main artery that goes directly to her heart.  This line will serve the purpose of infusion, blood drawings, and to administer any other medications needed. No more sticking her!  After this, she then had 2 hours of new MRIs done to see if anything has changed since surgery.  We were then instructed to go to lunch and then go to the Burzynski Clinic to start treatment.

At the Clinic I was shown how to administer an emergency dose of decadron (steroid) just in case she has a severe reaction due to swelling of the brain which can happen when the tumor starts breaking down.  These reactions can be shown by extreme vomiting, headache or even seizures.  So we will watch for these closely.  Her first infusion of treatment started immediately thereafter and it took almost 1 hour.  They only gave her a small dose the first time to make sure that she would not have any allergic reactions to the drug which she did not.  YES!

She carries a backpack right now for 24 hours a day with her medicine and pump that is programmed to give her the antineoplaston treatment exactly every four hours.  She must be very careful to not kink the line and to not forget to grab her bag when she gets back.  After dinner she got up and had forgotten she was attached and it pulled a little.  Not so fun!

Today, was Day 2 of treatment and they gave her more of a dosage today.  She did have nausea on the way home, but the pills we were given that are given to chemo patients works wonders, it works almost immediately sometimes.  She has been pretty tired all day though.  We also decided that it would be better to be closer to the clinic.  We found a place about 2 miles away from the Clinic which was referred to us by the Burzysnki resource case manager.  They have a discounted rate and we feel that being close will be advantageous to Kassidy in the long run.  There will be days like today that she will not feel well, so driving long distances is just not a good idea and in case of emergency we are close.

Next week I will be taught more on how to work everything.  They do not want to overwhelm me with all the information at first, so little by little I will learn how to draw her blood, clean the port, administer her medicine, program the pump  and keep good records to report back.  I will be trained on how to be Kassidy's nurse so I can do everything they do when we go home in a few weeks.

Day 1 was just the start of a long battle, but we will fight hard together as a family!