April 1st 2008 02:59 pm

Kai’s Home, Family Visits, and Sarcoma Specialist Appointment!

Well first of all, I want to describe picking up my mom and Kai at the airport. We were so nervous that he would be mad at us, but as he came down the escalator he was all smiles. He said, “Dadoo” and “Mommy”. As he jumped off the escalator, Sol picked him up, and we stole some much needed and longed for hugs. That was all we got, as he was much more interested in going up and down on the escalators and petting the little doggie that was there. He was the same happy little boy but with a larger vocabulary.

The weekend with my sister, Karen, and my mom was really fun. It wasn’t all that active, but hanging out was just what we needed to do. On Friday, Karen and I did girly things. We had our fingernails and toenails painted and watched chick flicks. On Saturday, we continued our girl time by going to a movie and shopping.  My cousin, Rachyl, hung out with us on Saturday night, we played games and had such a good time.  On Monday, we walked to breakfast and then went to visit my grandma in Santa Ana before dropping my mom off at the airport.  Kai had a hard time saying goodbye to Grammie; he’s really going to miss her.

I really missed all of the joy that Kai brought to our home.  One of Kai’s favorite sayings now is “I did it!” He said it for the first time in the bath tub as he used hooked a plastic boat and fish onto the fishing pole dadoo was holding. He thrust his fists in the air and proudly declared his independence, “I did it!” The rest of the weekend was full of cute things like putting his Cookie Monster to bed, taking Cookie to the potty, shifting his plate from Grammie to Mommy when he realized that Grammie’s ice cream was gone but Mommy still had some to share, watching (only inches away) a caterpillar crawl around, kicking his soccer ball around the concrete “yard” and just being curious about EVERYTHING!  It was so good to have him home.

This morning, Karen took Kai to daycare as we left at 6:15 for our 9:30 appointment.  (Is LA traffic horrible?)  We had some time before the appointment, so we went to breakfast and talked through all of the questions that we wanted to ask.  It was helpful.  We finally got to the appointment and waited as he looked over all the reports, films, scans and slides that we brought with us.  Great news…the CT last week showed nothing…it was clean!!!  In asking our questions, he never really gave us a straight black and white answer.  I think this is because there is still so little known, even the experts only see 4-5 angiosarcoma patients a year, that the causes and effective treatments are uncertain.  After talking to him for almost 2 hours, we walked out of the office with these comclusions:

1. Radiation is a “reasonable proposition”

2. More Chemo?  – “hard question, probably not now”

3. CT scans every 3 months.

4. Eat a generally healthy diet – leafy greens, fiber, limited red meat.

5. Recurrence risk is high, but we’re hoping that it doesn’t come back, but if it does, we’ll tackle it then.

So the plan is to proceed with radiation and do CT scans every 3 months to detect anything should it arise.  So in essence, the plan remains the same.

I have to run to a dentist’s appointment, but I’ll write more about how this makes me feel later.  Thank you for all of your prayers and concern.  You are all so wonderful!

Monica

1 Comment »

One Response to “Kai’s Home, Family Visits, and Sarcoma Specialist Appointment!”

  1. faith.gillis on 01 Apr 2008 at 3:20 pm #

    I’m so thankful for you that you can finally put this to rest (or at least for to “nap”) for awhile. God bless, and you will remain in my prayers.

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