Monday, February 27, 2012

Bridget---on her way back to Michigan!

Thank you to all who offered up prayers for Bridget today...I do believe God answered.  Bridget and family are on their way back to Michigan.  Her fight is far from over, but at least the family will be home and Bridget will be in familiar surroundings.  Here is the latest from her Mom posted around 10 pm tonight:

We are in the ambulance on our way to the airport!!! The Michigan Survival Flight came down to get us and we are on our way!!! We will be flying in a plane and then ambulance from Pontiac.
We received wonderful care at St. Francis Catholic Hospital/ Children's Hospital of IL. We were blessed to have so many great Drs. and nurses there. we will miss our new friends, but so glad to be Heading HOME to Mott!,, More later we are at the plane. Pray for safe travel and that we can get a quick MRI to see how big the tumor has gotten. There are some serious concerns from the view I saw of the cat scan that it may be a large mass. Every day with joy!!!

Keep the prayers going for both Bridget and Lisa who both will be spending time this week getting scans done.

Scans this week--prayers for Lisa and Bridgie!!

Scans are this week.  Lisa has been saying she thinks her cancer is gone.  Wow!  That would be awesome and surely the miracle I've been waiting for.  She looks and feels good and has more energy than me (although that's not saying much!)  Please continue to pray that things go well.

Also, special prayers for our friend Bridget the Brave...another young cancer warrior.   She has been fighting as long as Lisa against an unusual brain cancer that leaves doctors guessing at treatments and unfortunately causes seizures that sometimes can't be controlled.  They were in Ottowa, IL last week for the funeral of her grandma who was also a cancer warrior.  Bridget began having seizures and had to be life flighted to St Francis/Children's Hospital of Illinois last Thursday. This was posted yesterday by her Mom after their attempt to head home Saturday was thwarted by another seizure.

"Bridgie had a very rough day with many uncontrolled seizures. She is still seizing, though she has intermittent times when she is seizure free. The seizures seem to be focal, just one region of the brain so they are trying to get them to stop with the least amount of intervention. The problem with giving some of the drugs that would likely stop them is that she could end up on a breathing tube and need sedation. The sedation would then make it difficult to tell where she was at seizure.

She is having some trouble breathing comfortably as she is so exhausted. It sounds pretty scary, though her oxygen numbers seem to be fine. I am just worried it is wearing her out.

We were literally minutes from driving home yesterday with her. The car and kids were loaded up, discharge papers ready and Bridget was dressed. The nurse had to wait for theHeparin to deaccess her port. Right as the nurse went to remove the needle from her port which provides easy access to her blood vessels, Bridget started having a convulsive seizure. We are thanking God today for a slow pharmacy! We would have literally been on the road if she seized 5 minutes later!!! AS her nurse said, " It's a God thing" We were still in shock even hours later. It made me wonder how many inconveniences have spared us greater trial. God is good.
Today Bridget seizures have been longer than usual, some over an hour. Seizures are so scary. You feel so tremendously helpless. We are hoping they can get some control in the next day and figure out a safe way to get us home.

We are grateful for the tremendous outpouring of prayers with so many of you taking special time to pray and to pass on the request to your friends and family. We are truly blessed to have so many praying for Bridget, our sweet girl. Please keep bombarding Heaven with prayers for Bridget's healing. We know if God chooses not to answer these prayers in the way we would choose, it is not from want of asking. We are so grateful for that. everyday with joy."

Please God....remove cancer from childhood diseases.  These children are too young to have to fight so hard.  Please God....continue to give the family members is so hard on everyone.  The moms and dads who carry on and hope that they are making the right decisions for their children, the siblings who have to live life as "usual" why they watch their loved one in pain and agony, the grandparents, aunts, uncles, friends who all stand by willing and able to help, but nobody really knows how to make it all go away.  Please God...make cancer go away, not our children!

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!

Sunday, February 5, 2012

Totally Tubular

Good Morning everyone. It's a beautiful February Sunday morning in Michigan. At least I think this is Michigan. It's hard to tell due to the warm temperatures and lack of snow. I saw some kids making a snowman the other day but they were using trash bags. I can remember when we actually had the cold stuff to work with.

Lisa has been looking an feeling great lately but she was having a lot of trouble hearing the past few weeks. We were concerned that the chemo was the culprit and that is still a possibility but the Dr. appointment last week definitely helped. Linda said they cleaned out a bunch of "gunk" and the old tube that was in there and she seems to be hearing better. Tomorrow [Monday] I'm going to take her to get a new set of tubes put in. This will be her third set. I can remember her first set like it was only 5 years ago. Back then we were so concerned, as any parent would be. It's funny how this sort of procedure gets minimized in my mind after all she's been through. If you have a moment, send some positive thoughts her way.

On Tuesday Lisa begins her participation in a new clinical trial that will keep her home for then next 6-8 weeks. If not at home then confined to sparsely populated areas. On Tuesday, and every Tuesday for then next few weeks, she'll be given a dose of a virus called the "Seneca Valley Virus" that has been shown to enjoy munching on cancerous neuroblastoma tumors. Let's hope its hungry. The study will help determine how much of a does the kids should get. There's plenty of information out there if you are interested in learning more about it. Search for "Seneca Valley Virus Neuroblastoma" if you are so inclined. Lisa's isolation is precautionary only and she'll be closely monitored during the entire course of the trial. We'll post any significant updates here as we go.

That's about all I got at the moment folks. Enjoy the big game today and send Lisa your best and have a great February.