Mike here again: Sorry for the lack of communication but it most likely means things are going well, as they seem to be. Lisa is now officially a skinny kid. She began a year ago weighing, I'm guessing here, 45 lbs. Today she weighed 37 lbs. and she's probably 4 or 5 inches taller. She's gone from one end of the chart to the other. Not to worry though because she has a lot of energy and her appetite is growing this past week. Chrissy 6 years older only weighs 52 lbs and Tom's kinda scrawny too now that I think about it. They must have the thin gene we all hear about. They really do have access to plenty of food. Really. And they say they like my cooking....

I took Lisa in for a few follow up appointments today. Six "pokes" altogether, three under the skin to test for certain reactions, two getting blood, and one during the CT scan. There were a few tears and after each she apologized to the nurses for saying she hated them. One nurse commented that Lisa made her earn her money today and without missing a beat Lisa said "Well that's your job". There's nothing dulling this girls wit to be sure. We sure missed having the central line in today to alleviate the need for all those pokes. We go back on Thursday and she'll have to get an IV placed to start things off. Thursday's procedure is aphereses to collect stem cells again. Once the IV is in she'll be sedated and another line, a big line, is placed in the artery in the leg. Once aphereses is complete the lines are removed. She might end the day with a new central line, a "port" this time just below the skin in the chest.

On the horizon is Accutane Therapy and Monoclonal Antibody Therapy. These are relatively new treatments added to the bag of tricks that can be thrown at this disease. It's hard not to get complacent when Lisa seems to be doing so well, but in truth stage 4 Neuroblastoma is a tough adversary and the plan is to throw everything we can at it.

Your prayers and positive energy continue to help. Thank you all for that.

Wednesday - 4/22

Today is/was Lisa's last day of radiation. Woohoo! Once again she's been a model patient. Granted the sessions are pretty quick, some only lasting a few minutes, but she lays back and doesn't move. She's a pretty cool kid. At home she's really starting to get back into her groove and it's great to see and hear. Her appetite could be a little better as she is down about 3 lbs. since radiation began but on Monday she ate more than I've seen her eat in a long time. She's hungry a lot but just can't seem to get much in that ity-bity stomach of hers.

Saturday 4/18

Mike here: Lisa arrived home yesterday as we hoped she would. She still looks great and although she is still on antibiotics the infection appears to have gone. Yeah! Her line was removed so we're free to go swimming for the first time in 10 months.

Thusday 4/16 Update

Mike here: As of this writing Lisa will be released sometime on Friday after her line is removed. The "line" that Lisa has is a Broviac catheter. It's a long, hollow tube made of silicone, with an opening called a lumen. This catheter is commonly referred to as a central venous catheter because it is inserted through the chest and into the large vein leading directly into the heart. This line is used to administer medicines, IV, or draw blood and such and almost eliminates the need for "pokes".

The line is being removed because the consensus is that that is where the infection is. She's had this line, her second, for probably around 6 months so we feel we've done pretty good with it. Next week she'll have a different type of line placed below the skin in the chest. It's called a port and while it will require less maintenance, it will require a needle to access it. Since the port is just below the skin it should be much better than trying to access a vein every time.

So... good news once again. All those prayers and positive are really doing the trick. Lisa seems to be doing great and remains unfazed by all this. Since we're on Spring break this week, Maranda, Thomas, and Christina are here today and are pictured here playing Wii.

Nooooooooooooooooooooooooo!

Crap....6:45am call from doc...that's not good. Lisa cultures came back with bacteria. We have to take her to ER and have her admitted. I feel sick. Let's hope we've caught whatever it is quickly enough and that they can get things under control....she's still in her 100 day window after transplant, so even little things can blow up into something huge.

Let's hope for the best....and PRAY!

So Far So Good

Well, so far so good. The fever passed and Lisa labs looked good today, so we're still outpatient. Yeah. Her radiation treatment and vaccine shot have taken a lot out of her today and she spent most of it sleeping. She is definitely a bit more nauseous....hopefully we can all get a full nights sleep tonight and get back on our game.

I finally figured out how to add an email subscription to the blog. For those of you who would rather have updates mailed to you vs having to remember to check the blog, you can submit your email in the box on the right. When we make any updates, they will be automatically emailed to you within 24 hours.

3:40 AM....freaking out

Just before 3 am, Lisa woke us up saying she didn't feel well. I touched her head and told Mike she felt warm, he touched her head, grunted and rolled over. She ran into the bathroom to get sick and then ran out again saying she was fine. I took her to the living room to sit on the couch and hunted around for a thermometer, questioning whether it was stupidity or cockiness that allowed us to leave Lisa's paperwork, "as needed" med basket and good thermometer at the other house. I finally found the slowest working thermometer in the world and promptly put it under Lisa's arm.

102...sh!t ...that's not good, maybe I had in the wrong spot under her arm. I stuck it under Lisa's arm again and waited for a good minute as the crazy thing beeped every 4 seconds to indicate it was working....finally triple beeps and the number is....102. SH!T!!! Okay, maybe it's broken...I take my own temperature. Slow beeps, another minute goes by...finally...97.8...arghhhhhh! I go shake Mike awake..."You need to get up, are we supposed to call doctor at 100.5 still or at 101? Lisa's temp is 102...she could have an infection, should I call the doctor" Mike rolls over and mid snore says "Just wait a little bit, it will go down, she's worked up". Yah..right...."Hold this under your arm"I say and stick the thermometer under Mike....the clock ticks...and Mike's temperature reading is 98.1. .. crap. Mike mumbles"Lisa always runs higher when she's tired" Uh....not 102 high. I go get Lisa and dump her in bed with Mike..."feel how warm she is". He tells me to go get her a cool washcloth. When I return, Lisa says she has to go to the bathroom. I help her up and she goes to the bathroom and as she's washing her hands starts to throw up. I call for Mike for a little help. Once we get her cleaned up Mike takes over the temperature reading....her temp comes down a little bit with water and cool cloths. Of course the only tylenol I have in the house expired in 2005...that's ok, I'm too nervous to give it to her anyway because I don't want to mask her temperature. I ask Mike to take her temp again..it's dropped a bit...100.7....good enough for him. They both roll over and go to sleep, I pull out the computer and blog.

This is freaking me out....one part of me wants to run and call the doctor because her temp spiked. The other part of me has no desire to drag her into the ER and sit around for 3 hours in the middle of the night to get her admitted (which is standard protocol for cancer kids with a fever). One part of me is saying I'm just being a worry wart, the other part of me knows how important it is to get antibiotics running if this is an infection. One part of me really believes it's just a side effect from the radiation, and the other part of me knows I should be down on my knees begging God to please not let this be an infection.

So at 4:06 in the morning and now a temperature of 99, I hope that all the prayers for Lisa are still flooding the heavens and that we don't have to become visitors to Motts 7th floor any time soon. Guess I should try and get some sleep, Lisa and Mike seem to have things under control.