July 19, 2008 

We are off to NYC.   It has been six months and what a great break from the long flight and laser surgery.   We drop Reeve off with Mama and Papa, Larry's Parents.  What would we do without them this last year?  Reeve is so good about letting us leave him to take Kaylynn.  It helped that we had his 4th birthday party on Saturday before we left.   We had a direct flight on Delta. Kaylynn slept for some of it, but then we got to JFK airport and sat on the runway for 1 and 1/2 hours.  Torture!

 

I kept thinking about all of our trips to New York.   How Kaylynn was only 3 months old and so small on our first trip.   Sitting in Dr. Waner's waiting room,  Larry and I being so relieved seeing parents and kids who were experiencing other hemangiomas.     How I would fly up to meet Papa Gus in NYC and make

all our doctor rounds.   Breast Feeding,  bottles, baby food, little toys.   Now Kaylynn is 18 months walking, sippy cups, and snacks.   And the hemangioma almost gone.

 

July 20, 2008

It was the first time Kaylynn walked back to pre-op for the laser surgery.   It made Larry and I realized how far we have come and could see the end in sight.  Since Kaylynn is older we get the later time now.    So we have to hold Kaylynn off from eating until surgery at 11am.  Thank goodness for pacifiers. 

 

Kaylynn did great except for running circles around the room.   Sarantakes family everyone loved the scrubs again.    Kaylynn was in surgery for about 10 minutes.   She had Fraxel laser to resurface off the excess skin from the hemangioma and pulse dye laser behind her ear where the "h" still is raised and redder.     She came out pissed from anesthesia again.   She is remembering a lot know and was even pissed at the doctor.   She was happy once we left the hospital.  

 

We decided to take Kaylynn to FAO Swartz to see all the baby dolls. She couldn't pile enough in the baby stroller.  

We wanted to take her mind off the laser surgery to head to the cardiologist.  Dr. Agrilla met us to do Kaylynn's echo.    She was so good watching Barney and kept turning her head to the sounds of

her heart.   Short version,  Kaylynn has a slightly enlarged left aorta valve for her age and size.  They were thinking it would go down from last year, but it increased even with her growth.   Nothing to worry about right away.   So we follow up again next year.    Right after, my little medical baby,  Larry and I head to see Dr. Blei.  Dr. Blei managed our steroids and PHACE syndrome.   She was so thrilled with how good Kaylynn looked.  Our immune system should be improving and we need to get another MRI/MRA done here in Austin.

 

We are done at 4pm and head to Central Park.  Ahhh,  Central Park.   It is so beautiful and relaxing.   Kaylynn points at all the dogs and birds.   Dinner, Ice Cream,  Bedtime.

 

Reeve had another great day with Mama and Papa.  Helping in the shop with candle orders,  going to the indoor bouncy place and getting McDonald's. 

 

July 21, 2008

 

Dr. Ciesler, ophthalmologist.   Kaylynn does so well again.   Her eyesight is getting better in the right eye that has the morning glory.  Her left eye with the hemangioma is not as good, but they balance each other out well.    We will just keep following up.   

 

We get home at 2am after a 6 hour delay at JFK airport and then a 3.5 hour flight.   These flights back from New York are just not fun.   Poor Reeve was so excited we were coming home and we didn't make it until so late.   We convinced him to go to sleep at our neighbors, Baron's house and when he went to bed he said, 

"my daddy is going to come and get me."   Daddy did get him at 2:15am.    He was happy to see us all the next morning.   I feel for him.  It seems like so much has changed in his life in the last 17 months. 

 

We will head back to NYC in October or November.  Kaylynn is looking great and I believe this will be completely gone by the end of 2009.    I am taking my radioactive iodine pill this week for my thyroid cancer and will be out of the house and away from the kids for the next 7 days. Poor Larry!   It doesn't seem to end.  It has side effects, but I'm guess with having experienced chemo,  and iodine pill is nothing.  I'm feeling good today.

 

I'm still just taking it one day at a time as it seem the rush of things are happening again.   I do have more energy and feel better.   I'm even training for my 60 mile Komen walk.    If you would like to donate go to:

http://08.the3day.org/site/TR/Walk/WashingtonDCEvent?px=1228146&pg=personal&fr_id=1192   Remember every $10.00 counts.   

 

My friend Michelle needs your prayers.  It was confirmed that the cancer has returned to her bones, chest wall and liver.   She started back on chemo this past Friday.  Chemo room is not the place you want to go back to, ever.     Pray to keep her body strong, her mind happy, and for remission.   All of your prayers, love,

support, words and thoughts have helped me in so many ways during this last 9 months.  I know they will bless her too.

 

Hugs,
Traci, Larry, Kaylynn & Reeve