Yeah! It's Break week 1!!

This week Jessie is totally normal, almost. Only a port under her skin and short short hair. No needles, no arsenic streaming into her veins, no blood draws, no EKGS, no skipping her favorite part of the day (after school with her friends). She is on a break. This is week 1 of 2 of this break. So adios amigos! I'll be back in a few weeks!!! :-) Mama gets a break too.

End of week 5 - Jury Still out about the sluggish line

Well, the one side of the port still seems sluggish. The nurse can't get blood from it hardly at all, but the line did flush. So they put the heparin in it and started week 5 on the good side which did well all week.
We will know more in a few weeks when we access that slow side again to see how it's going.

Middle of Week 4 - Sluggish line

Jessie has a double lumen port which means there are basically two different lines to access her veins. One of them has had some constant resistance when the nurse flushes it at the end with heprin. When Jessie said that she could feel it in her neck the other day during the flush, the nurse checked with the doctor and they decided to do a dye xray the next day to make sure the line was still in the right place.
Long story short, it's in the right place, but they think it may have some "gunk" in the line. They decided to try a medicine called TPA (a clot busting drug) to clean out the line. They put it in the line last night before we left and are going to draw it out today when we go back. Keep your fingers crossed!

Since the. Arsenic treatments started Jessie has been having several hot flashes per day and feeling a but sluggish herself. Welcome to my world!! Poor thing. That stinks at 18, but she never complains. What a trooper.

April 9th- Start of 3rd Week of Arsenic - Many Thanks to All

Today is Monday and wow what a change for the better! Since Jessie is doing so well with the Arsenic treatments the docs decided to let us do a few visits in Rockville at the Children's Outpatient Building (which is 5 mins from our house). I know they had to jump through many hoops to get this place on the "approved" list in the clinical trial, but it was so worth it! Instead of our normal 9 hour marathon Mondays, we came in this morning to do the EKG at 8:30am. It was done, read and OK'ed by 9am. The nurse took vitals and accessed the port back in an exam room. The drew the blood she needed and sent it down to the lab to get the CBC done. Results came back by 9:50am- all is well. "Come back in 2 hours for the infusion", nurse said. She called Children's Hospital downtown to order the medicine and have it couriered to the Rockville location. We got to go home and get things done for 2 hours, then come back for the infusion. We should be home by 2:30 pm or so and still have the rest of the day!! There are still a few days where we will have to go downtown, but hopefully not 5 days per week.

THANKS TO EVERYONE
I just wanted to say a great, big THANKS to everyone for all the help we have received like countless delicious meals delivered, itunes and other gift cards (and an IPad2!) for Jessie to keep her occupied, earrings, bracelets, books, "cancer blows" tshirts, rides for Sara and Drew to various activities, Costco runs, rides for Jessie's friends to visit her in the hospital, offers to do chores around the house no matter how small, encouraging comments on FB and this blog, prayers, emails, cards, laughs, etc... You have made this journey bearable and sometimes even enjoyable! I know we have a ways to go, but I wanted to thank you from the bottom of my heart for all you've done already. :-) Like Tiny Tim says, "God bless you all, each and every one!"

April 2 - 2nd week of Arsenic Infusions

As far as Jessie's body goes, she is handling the Arsenic Trioxide infusions very well. The only problem has mainly been that it takes a LONG time. It is a minimum of 5 hours from door to door. It just doesn't seem to be possible to go any faster. Especially on Mondays. Today went much like last Monday....up at 7 am, leave by 7:15am. Get to the hospital by 8:20am and to cardiology clinic by 8:30am. Wait, wait, wait until they call your name. No one else is in the waiting room that early. Why does it take 30 minutes when no one else is there? Who knows. 9-9:05am: 12 lead EKG done. We trek back up to Hematology/Oncology clinic where we sit and wait. At least there are other patients there that were ahead of you so you feel a little justified waiting. 9:30-9:45am- they call your name. You go back, get vitals done and get a "pod" for the infusion. 10:30am nurse comes in to take blood. 11am-EKG has been read 2 hours later. It's OK for another week of treatment. Not much happens for a few hours. Occasionally you see a nurse who says, "We are still waiting to hear about the labs". Finally about 12:30pm they get the OK from the lab that the magnesium level is good. Nurse says, "Now the lab will mix the medicine". A few hours later, nurse appears with the fluid. Infusion starts about 2:30pm and is supposed to take 2 hours with a 20 min flush after. Somehow the lab doesn't subtract fluid from the bag before the insert the medicine so a 2 hour infusion becomes a 2.5 hour infusion. Then a 20 min flush. It's 5:20pm by the time the infusion is finished. By the time you jump in the car and get home it's about 6:30 or 7pm. Whew!
All other days it about 2.5 hours of round trip travel time and 2.5 hours of infusion. I'm trying to avoid wait time at any point during our visit because it just adds to this marathon. Jessie has been such a trooper keeping me calm when it gets so frustrating waiting. Mike took her today to give me a break and he experienced the fun today. He texted me that Jessie was taking this like a pro and he was so very proud of her and amazed at her strength. Way to go, Jessie. Momma is proud of you, too!