Monday, February 20, 2012

Seneca Valley Virus--Injected on Valentines Day

It's been almost 2 weeks since we updated....lots going on.  I'll try and keep this brief...but....who are we kidding? I've got lots to say and this will end up being a lonnnnnnggg post:)

2 weeks ago in preparation for Seneca Valley Virus, we spent our time running around getting everything in order before the study.  Not only did this include a few trips to hospital for bloodwork and chats with our medical team.  It also included minor ear surgery to get the tubes put back into Lisa's ears so she could hear better and a trip to the dentist to take check for cavities or any other problems.

The ear surgery on Monday went off with no problems.  Mike and I had to chuckle about their post-op protocol.  They wanted two adults there for when Lisa came out from anesthesia so that in the car ride home one person could drive and one person could attend the child if there were any problems.  We politely explained that we had it covered and would call in back up if needed.....we are, after all, pretty seasoned at this...and the child is a "cancer warrior"...this little procedure is nothing in our book.  (Funny how much things have changed since the first tubes were put in years ago.  At that time, it was Lisa's first surgery and we were both there, on pins and needles, waiting for Lisa to come out, and praying that everything would go ok and she would have no adverse effects to the anesthesia).  I am happy to report that this surgery went as well as the one years ago and that it appears to have worked.  Lisa seems to be hearing better and  has stopped saying, what??? all the time.

Thursday, our trip to the dentist, which is normally pretty anti-climatic, ended with a bit of drama.  Lisa did well throughout most of it, but towards the end started to freak out and cry.  This is really unusual for her and I give a lot of credit to the hygienist who carried on thru tears, leg kicking and my big head in the way as Lisa strong armed me in a hug to her chest.  We figured her behavior was from being worn out from the Monday ear surgery, Tuesday chemo, Wednesday full day of school and now laying in a dentist chair.  As soon as we were done, Lisa headed for the toy box. Once she got her toy, she was ready to go and very inpatient as I scheduled next appointments.  I was still surprised at her behavior because she normally is the social butterfly in the dentist office and if she isn't raiding the toy drawer and toothbrushes, she is usually checking up on the dentist to see if she needs any help.  Things finally made sense when I buckled her in the car and she grabbed the barf bucket.  Poor thing was nauseous!  The chemo from two days prior, her oral meds, and the dentist took their toll.  She started her calming breaths and closed her eyes.  Two miles later she got sick.  I pulled over got her some water did a quick clean up.  By the third mile of the drive home she was sleeping. 

Friday it was back to school. Saturday we were fortunate to have my niece and her family come over with their 1 week old baby.  It was great timing because Lisa has been asking about baby Connor for the last 9 mos and my niece was accommodating enough to have him before Lisa was put into "quarantine".  Thanks Megan.

Sunday and Monday were the "norm". 

Tuesday, Valentine's day, was injection day.  Lisa and I spent 12+ hours at the hospital as they ran hydration to get her ready for her chemo and injection.  Because of the nature of the study, we go to the Cardiovascular Center and in the basement is the Michigan Clinical Research Unit (MCRU)which houses research studies of this nature.  Of all the places we've been in the hospital, this is one of my favorites.  I feel like I'm more a guest of a hotel then a patient in a hospital.  I think it has a lot to do with the staff.  They are all very personable and treat Lisa like royalty.  Her room is always ready and waiting with a nice toy and blanket.  The nurses have very low patient load so they are always right there.  The administrator and food staff are always coming in to check on us and see if there is anything you need and willing to "check the kitchen" to deliver up Lisa's request.

Lisa and I spent most of the day playing board games, working on the computer, and watching tv.  The chemo and virus infusion were uneventful.  The most difficult part was when they had to do a blood draw from Lisa's vein because her port was being used for the virus.  While I tried to keep this info from Lisa, she figured out pretty early on as I kept pulling the nurses aside to let them know I was worried they were going to have trouble finding a vein and that Lisa is a "hard stick".  I was working with the best of the best and they know us pretty well, but I could tell they were a bit skeptical about my prediction.  As they checked Lisa's veins they gave me a nod of knowing...tough, but not impossible.  When the time came, Lisa was a bit stressed out but allowed her regular nurse to give it a try.  With a big breath she inserted the needle and....nothing.   Lisa took one look and told the other nurse to try.  We chose a different spot and with a few gentle re-insertions they got the needle in.  Lisa commanded the blood to flow and it was over in seconds.  The nurses both gave me a nod of appreciation and acknowledged that Lisa was indeed a tough one to poke and one tough kid.  They promised her a toy the next time she came in.

Since then it's been pretty smooth sailing.  Lisa goes back to the MCRU twice a week for blood draw.  We also have to take a poop sample (yes, poop...totally gross...totally a job delegated to Mike) with us.  Other than that Lisa is doing great, looks great, and has tons of energy.  It's going to be tough to keep her occupied and busy while she is in "quarantine" and not able to attend school but I'm sure we will manage.

Still hoping for a miracle of a cure this year...perhaps this is it. 

Keep your fingers crossed and your prayers going!

PS...Lisa made sure to collect her new toy when she went back for her next visit!

1 comment:

Anonymous said...

Praying for you. All my best to Lisa and your whole family. She is an inspiration and so are you!