Thursday, October 16, 2008

So, what we've been up to this week-

Monday, we took a hike in an area near us where dogs are welcome, so we took Tod and Riley. We haven't been hiking there together in quite a while, probably last fall. Last fall Hannah couldn't walk the whole way, we had to pick her up and carry her for much of the time. This time, while she started to complain at the end of the walk (and didn't get picked up), she made it! It was an eye opener to how far she has come. She was running with Tod, walking up steep hills, walking in sand. It was great! What wasn't so great were all the ticks we found at the end of our walk. We had let Tod and Riley off the leashes for part of the time-taking a very big risk with "the bullet" Tod who immediately darted away at full speed. But, just when you thought he wouldn't come back, he would turn around and surprise us. It seems on those jaunts around the woods, both dogs picked up quite a few ticks. We started searching them before we got into the car, and found a total of 14 TICKS...yuck! We all came home and stripped down and checked ourselves like monkeys :) Not one tick on us, which is good. I can't imagine one of the girls with Lyme Disease.

So, speaking of Lymes, I saw another doctor Tuesday who said not only was I treated with ineffective, out of date drugs, the other drug I was given was not a high enough dose! This Monday I go to ambulatory surgery to have a pic line put in (a semi-permanent iv line, with a long catheter that goes up the vein in my arm, to one of the main veins in my chest.) Doesn't that sound pleasant? I will start the IV antibiotics Monday afternoon for 30 days every day for 30 minutes. It sounds pretty harsh, so I'm hoping this is a one time deal and I'm done!

Hannah saw the endocrinologist Monday also. We waited for over an hour in the waiting room,the whole family, which seemed like an eternity. All checked out with her blood tests and her growth rate, so we don't go back for another 6 months...April to be exact. Seems strange. She is still on Vitamin D and Vitamin C daily supplements to build her bone density. Most likely she'll have another scan after our next visit to check and see if her bone density has increased. She doesn't have the pain any longer, so that's a good sign.

Hannah did have one sick day at home this week. On Wednesday, on the way to chorus we had to pull the car over, and she was sick outside. Poor thing, she thinks nothing of throwing up on the side of the road as cars are speeding by. After coming home to rest a bit, she decided to go in to school at regular time. by 10:30am they called me to come pick her up. She had a stomach ache and wasn't eating. She came home and took a 2 hour nap, and finally after eating some dinner, felt better. She has been fine since then, so I don't know if it was a bug or tumor issues still.

However, she has done some amazing things this week, today as a matter of fact. She is the captain of the lacrosse team in gym class at school and was telling me this morning how she didn't realize this came with so many responsibilities. So today in gym class, she scored a goal and turned around to Mrs. W, her aide and said "I got it back!" Isn't that great? 

And also today, she tested for her bronze medal at swimming lessons. She had no problem at all, and was smiling ear to ear when she got to ring the bell and get her medal! She loves swimming and I signed her up today for lessons through July! 

A few more kiddies that need our prayers:
Amber was diagnosed with Stage IV Ewings Sarcoma at age 9. Since then she has relapsed twice and is now on an experimental drug trial.
Garrett had medulloblastoma, and just recently heard that the disease remains on his brain and spinal cord. He is in New York City right now, however found out today that his MRI showed growth and he is headed back home.
Nicholas is a 5 year old with neuroblastoma. Diagnosed in 2006, he relapsed in September of 2008 and is starting the fight again.

And our kids who have earned their angel wings:
Our King JuJu
Brendan just died last week. He had Burkitts Lymphoma and he was getting ready to receive a bone marrow transplant when he relapsed and passed away.



Anonymous said...

Way to go! Way to go! Way to go Hannah!!!!!

Love and prayers (for everyone), Anne Salice

P.S.-Kim want me to put in your PICC line?? Kidding!! Need ANYTHING-please call me!

Heide said...

Good morning, Team Hannah!! Just stopping by to let you all know that you remain in my thoughts and prayers. I hope you're having a GRAND weekend!!!

Thanks so much for being a part of Team Unite and continuing to help spread the word!!

m/o ^Jessica^ (forever 17) & Jake (17)