Wednesday, April 2, 2008

We met today with the surgeon who put Hannah's port in and will take it out next week, Dr. Scrivins. Very nice man, he set us at ease about the procedure. I had some questions about anesthesia, recovery, Hannah's counts, complications, etc. The doctor said he has done over 1,000 port removals and has never had one break before. He has had 2 cases where the catheter came unattached from the port itself, and got stuck in the artery, which is why he does these procedures in the regular OR, rather than only in the ambulatory surgery area, where they don't have all the resources available if you need them. Hopefully, we won't need them. The whole process will take about 3 hours, including preparation, anesthesia, operation (about 30 minutes), and recovery.

We have another meeting with the anesthesia team on Friday. I want to discuss what kind of drug they will be using, since Hannah doesn't react that well with most of them. We learned that in Boston, waking up over and over after radiation kicking and screaming. I know they will put her out with the mask, then insert a peripheral IV for the procedure. I will get to put on the bunny suit and accompany her back into the operating room as they put her to sleep.

Today she started crying in the doctor's office, asking if was going to hurt. She was referring to the IV, when she heard them mention IV, she got upset. That is the only part she really cares about, not really knowing what to expect from the surgery itself.

I just keep telling myself that this will be a walk in the park compared to the other surgeries she has been through. We've made it through those, so this should be easy.

Now on to the exciting news....THE WII'S HAVE LANDED!! Hannah and I stopped by Walmart on the way home from the doctor's office, and they didn't have any Wii's, but directed us to a store that did! They held one for us, and when we got there, they allowed to us buy two of them! It was pretty exciting for both of us! Hannah plans on giving them to Schneider Children's hospital, and Spaulding Rehab Hospital in Boston. We have already spoken to Schneiders to be sure they would be able to hook them up and use them. They do have a Wii already in use in the transplant area, so it is possible. We will either donate it for the 4th floor oncology inpatient ward, or the 2nd floor clinic where Hannah makes her visits, they said it's our choice. There really isn't that much room on the 2nd floor, so our thought it to put it in upstairs, where they kids are there for longer periods of time, and really need the activity they can get with a Wii!

We really have been inspired by Team Henry. Henry Tucker is a little boy who was diagnosed with B-cell ALL, a common form of childhood leukemia. After 3 years of remission, Henry's cancer came back as a rare and very aggressive form of t-cell leukemia. Henry died in June of 2007. Henry's family have created the Henry Tucker Foundation to raise awareness of childhood cancer and to offer support families dealing with emotional, financial and physical difficulties. They are doing amazing things, leading the way to get the Conquer Childhood Cancer Act to the floor and passed, among other things! They are certainly one of the most active families in the world of childhood cancer, I admire them. This team sets the daily strategies that I and many others have been following for calling our Senators and Representatives. They do so much more, it's just amazing. We have been inspired by Team Henry's donation of 11 Wii's to Henry's hospital...and then 11 more! A total of 22 Wii's! WOW! They donated enough for each room, plus each transplant room in their hospital. Henry was one special little boy, and he has a lot of people working in his memory. You can check out his site, and everything they are doing click HERE. You can usse my email address if you just want to view his site and don't want to register.

The girls do not have school tomorrow due to parent teacher conferences, so they are up late tonight, enjoying American Idol. Tomorrow we'll just enjoy some down time together. Doing stuff like this.....

xoxo Kim