March 25, 2008

Standard Interim has been officially kicked in the BUTT!!! Woooo Hoooo!

Hey everyone! Well... we made it to clinic today and everything was great. Everything except Alex lost another 3 1/2 pounds!!! NOT good!!! I was really surprised by this! I think because the dreaded mouth sores have returned, I don't think she has been getting as much to eat as I thought. I have my work cut out for me to get her eating before the next phase because the doctor wants her up and holding steady. Get this... I can wrap my two hands around the biggest portion of her thigh, with room to spare!!! Other than that, everything else looked great. Most of our day was spent waiting on the chemo. It seemed to take forever today. Dan and Alex made good use of time by doing chair racing up and down the halls (picture posted). I know they love us there.

Alex has 15 days off until the dreaded phase starts. She will get many many different types of chemicals in this next phase. I have posted a picture of her next schedule. It shows what she gets on what day. On day one, she gets many things... some things run day 1 thru 7... there are several different chemos that she will receive 4 days in a row, at different times.. she will have 3 more spinal taps done... They are also introducing several types of chemo that we haven't had before... some orally, and some IV and some in her spinal fluid. She also has the YUCKY steroids day 1 thru 7 and then again days 15 thru 21. We are also back to going to clinic every Tuesday. This will be her last break of any kind before she finally gets to maintenance. WHICH I PLAN TO HAVE ONE ASS KICKING PARTY!!!!! Those that can attend, it would be great to see you there. I will let you know when.

So... we have 15 days of freedom until this starts. She probably won't feel the best tomorrow, but then things should start perking up. I hope to have a good couple of weeks with her. One thing that is WAY exciting that is going to happen during this break, is that it is going to be Alex's 18th birthday!!!! April 3rd WOOOO HOOOO!!!! Alex has been so excited to register to vote since she was WAY young... too funny... but true... SO, we will definitely get that done. It is so cool that she will probably be feeling really dang good by her birthday! Her dad is going to fly in (just for the day...but WAY cool!) and the family is going out for a BIG dinner at The Melting Pot. Something fun and different, and her choice. I will take pictures of the party and let you know how it goes.

Also... the Physical Therapist starts on Thursday. It will be so good to get Alex doing some different things. I need to find her a "hot" personal trainer. I know that would do it for me... hee hee

And for everyone who played last week... Lennon wasn't buried... he was cremated and his ashes were given to family and friends... Duane won!

Thanks everyone!!! And please send good blood vibes. Treatment can't start on the 8th unless her white count is high enough... and her platelets are up. All of your good thoughts are working. I really believe this... so please stay with us :o) And....

HAPPY BIRTHDAY ALEX!!!!! I LOVE YOU!!!!

This is a filter that the chemo runs through.

March 14, 2008 - Lumbar Day!

Happy Day 31 everyone!

We went to clinic today as scheduled. First it was up to the Oncology clinic and that is where Alex is measured and weighed... blood pressure done, all that fun stuff. The good news here is her blood pressure is finally back down to normal and with NO drugs doing it. Yippee!!! She has been off of the 2 different blood pressure drugs for a month now, but her pressure has still been quite high every time we go in. Today it was awesome. Alex weighed 45.9 for the last three visits and today it was 46.0. SO... I am not allowed to nag her for a whole week about eating :o) That is like MAYBE an ounce. I wish I had this problem... I have gained an ounce sitting here on my butt, typing this! After the examination by the doctor, we were sent down to the RTU (Rapid Treatment Unit) for her Lumbar Pucture (pictures updated). As a side note... Alex and Dan try to think of funny things that RTU stands for every week. I can't even tell you what some of them are!! Anyway... first they put you in another waiting room and then the anesthesiologist comes in and goes over her history... and really talks with you about things. I love all of them that we have met. After that they take her into a sedation room and that is where they do the procedure. I am always able to go in with her, up until the time when she goes to sleep.... The procedure went fine and soon we were taking her out of the recovery room and back upstairs for her IV chemo. Today we opted for the wheelchair as she was still pretty out of it... Since we went down to the RTU today, her chemo was ready and waiting for us in the clinic.... and it was QUIET in there today. It was extremely nice. No one was making signs and flashing them out the window... no one was causing trouble... today was trivia... let's see how many people know this one??? Without using GOOGLE.... Where is John Lennon buried? Write your answer in the guestbook... the winner gets.... well.... they just win. :o)

That was about it today... just a bunch of chemicals designed to make Alex kick this nasty bug! We have an 11 day break now... next appointment is the 25th and then we are DONE with this phase!!! Yippee!!! Keep the blood cell vibes flowing so we can get it over with!!!

Thank you everyone... for all your well wishing!

March 5, 2008 - First trip back to Barnes and Noble

Hi again!

I just thought I would update with a new picture and let you all know that today, the first time since October, Alex has returned to her natural habitat. This is exciting... Picture has been posted. We figured that this was probably the best day to get out. We know she had a few blood cells from yesterday, so... off we went to Barnes and Noble, Alex's old home away from home, and workplace. We ran into Alex's old manager that wished us both well, and told Alex that she has a job whenever she is ready. He was really hoping by next week :)

Oh, another funny things since yesterday... the hospital has contacted me to see if I would sign a release for that photo of Alex. I guess it has become a BIG hit and they would like to use it in one of their Powerpoint training programs. I guess it has gotten around to quite a few people. I will let them use it. If it can make someone else laugh, it will be worth it.

Hope everyone has a great week!

March 4, 2008 - HELP!

Happy Day 21!!!

Hi everyone! Well, we had clinic today and let me tell you, it was the fastest clinic day EVER. In and out in 2 1/2 hours and that was WITH treatment! Yes, Alex had enough white blood cells to continue. We were really happy about that. The red count was still low, but the overall volume of blood had increased, so that was great.

This clinic day was TOO funny! SO, we are sitting in our room waiting on the doctor and the blood counts to come back, and this is Alex's time to entertain us lately, so... she rips off the paper on the examining table and writes "HELP" on it... there is a window in the room that looks out onto the hallway of Primary Children's Hospital, so Alex opened the blinds and held up this sign to every person who walked by. It was hilarious to watch all the different expressions. We were laughing so hard. Anyway... once we moved to the infusion room, the front desk lady came back and said that it was the funniest thing she had seen in the clinic and that Human Resources had called and was concerned about the child in room #1. It was great. I have included a picture. She even had me email her the picture. I think all sorts of people from around the hospital sent others to look at the window. It was like a hidden camera scene from Jay Leno or something... the different looks we were getting... some just standing there for a second, wondering if they should come in?? Was it funny? Should they just ignore it and move on?? OH, you had to be there. I haven't seen Dan laugh that hard in a LONG time... and he laughs a lot.

Other than our waiting room fun, there wasn't much else exciting that took place. Alex felt well enough (obviously) to order from room service and have lunch brought up while we waited for her chemo to arrive. Now we are hopefully going back next Friday for "Day 31" and the second to last treatment on this plan. They will actually send a nurse out to our home on Thursday to run a complete blood panel to see if we have to waste our time going in on Friday. That will be nice.

...as I was sitting there today, there was a couple that was being escorted through, a nurse showing them the clinic for the first time. They had that "deer in the headlights" look. You could tell that they were getting the first tour of everything. I know exactly how that feels...I am sure I had the same look. I felt for them... because I had no idea, at the time, how much that place was going to be a part of our lives and how scared I was at the unknown... so many questions and you don't even know what they are. Now it is just part of our routine... something that we don't complain about too much, and we just try to find something to laugh about while we struggle through. Alex is an amazing girl.

No word yet on if the Neurologist read the EEG results yet. My answer would be no... so I will have to bug her about that. As far as the last bone marrow biopsy went a few weeks ago, there was still a reading of 0% leukemia cells! Yea!!!

Thank you everyone for all your thoughts and prayers. Please keep the good blood cell ju-ju coming! We need two more treatments out of this one! Next week will be a Spinal Tap. I will try to remember this time to get a picture of it... it is pretty interesting. Have a great week everyone! Thanks so much for taking the time to read Alex's story.