Scan week--fingers and toes crossed

I know we haven't updated much lately...sorry about that.  Call it denial, call it basking in the good days, call it if I don't think about it-it won't happen.  Whatever you call it, here is a quick update.

Lisa has had great energy levels and is full of smiles.  She has been "working" with homebound teachers (or should I say making them work as they have to fight to keep her focused) to keep up on her schoolwork.  And, we've been sneaking her out in the public for more excursions even though technically she has not been "cleared".

While she looks great and still has the warrior attitude I find myself feeling like I'm holding my breath waiting to find out what this cancer is up to.  The fact that Lisa is complaining more and more about her back and has requested "spine surgery" more than once makes me quite uneasy.  It is anticipated that her cancer will move to her spine next and if that happens treatment options become very limited.

Her back pain, coupled with the fact that my Mother's cancer has stopped responding to treatment, really has me anxious.  For the past 6 mos both Lisa and my Mom's cancer have been keeping pace with each other....their scans have been a few days apart and remained stable together, they been on the same drugs together, and have switched up treatments at the same time.  While I'm sure it's just coincidence, it does make me uneasy knowing Mom's cancer is trying to get the upper hand.  I pray that Lisa's cancer behaves itself and remains stable, stays of her spine, or just completely, miraculously disappears.

Fingers and toes crossed, prayers and pleading going up!

Lisa at St. Patrick's Day Parade in Detroit

Lisa has been doing very good on this trial study she's on but this entry is about her day out at the parade on Sunday. For those of you not familiar with South East Michigan in March, the weather can be very unpredictable. Anything from freezing sleet, snow, rain, or like yesterday 60+ and sunny. Lisa arrived early with her sister Chrissy and dad [me], and met a host of others already there and that continued to arrive throughout the morning.
The parade followed the annual St. Patrick's day run that had to be the largest I've ever seen on that day. Probably a result of the weather as much as anything. The parade itself seemed to be longer too and Lisa took it all in from the curb in front of the Firestone store on Michigan Ave. A big thank you to Firestone for letting us park there for the day!
As you can see from the photos, Lisa met up with some great friends and was able to escape to the big blue bus when she needed to rest. It was a great day all around and we hope you were able to enjoy it as much as we did!

Bridget the Brave---An Amazing Day

For those of you keeping tabs on Bridget...below is her mom's post from yesterday...like a said...these kids aren't going down without a fight...amazing!!

An Amazing Day

Bridget had an amazing morning! I didn't get to sleep until 5 am for various reasons plus Bridget was sick in the night. I woke up to Bridgie lying awake in her bed. "Where's my glasses?". I told her I had them. "Well, I need them"

This started an amazing morning of doing all the things I told you 3 hours previously that she was no longer able to do. She used the bathroom, stood and walked with assistance, talked clearly without the slurring, conversed on the phone with her dad, watched some tv. The kicker was she said "I am hungry and wanted chicken nuggets! Mind you it was 8 am. Luckily, I had a stash from the night before in the fridge. I had to order honey mustard though. In order to do that I had to order breakfast for her...lol!
She was tired, but we had a full conversation about some things. One of the Gift of Art Musicians knows a friend of ours and she came and played some music. Bridget was tapping her foot, sang a verse or two and even did some of the motions. The guitarist played a song with zebras in it about going to the zoo just for Bridge and a few Irish ones too;) I was just see excited to have some moments with my Bridgie enjoying herself.
She was tired when her godmother came to visit, but she listened and prayed a whole rosary along with her, listening to the words and very devoutly nodding at the end of each prayer. She started to get sleepy at about 3, but she had quite a full day.
When we go to radiation a SWAT team takes her....kind of like Survival Flight within the hospital. Radiation is about a mile walk from Mott through the hospital. They are with us the whole time in case she has a problem.
Fr. Lobert, the chaplain of my kid's high school, Fr. Gabriel Richard, stopped by in the early evening. He gave Bridgie the Anointing of the Sick, a Catholic sacrament of healing.
I would say it was a good day. G.K. Chesterton once said that " the most astonishing things about miracles is they happen!" May we continue to be astonished with the big and little things In all our lives.
Every Day With Joy!

St Therese's prayer

This came as a "chain" email to me today. I stripped out all the "send to xx people and good things will happen" part but feel the need to post the prayer. St Therese, the Little Flower, is one of my favorites and her prayer is inspirational.

 

Saint Theresa is known as the Saint of the Little Ways, meaning she believed in doing the little things in life well and with great love.... She is represented by roses. May everyone who receives this message be blessed.

Read the prayer below.

Saint Theresa's Prayer

May today there be peace within.

May you trust God that you are exactly where you are meant to be.

May you not forget the infinite possibilities that are born of faith.

May you use those gifts that you have received, and pass on the love that has been given to you.

May you be content knowing you are a child of God.

Let this presence settle into your bones, and allow your soul the freedom to sing, dance, praise and love.

It is there for each and every one of us..

 

Praise God!! Go Cancer Warriors!

No news is good news and so is stable!!  While Lisa's cancer isn't gone yet, so far preliminary results from scans show it is stable which means no growth...yeah!!!!

Here is what our team emailed...

"Yes,  MIBG and head CT are back. CT of the chest is not back yet. MIBG is overall stable with no change from the previous. CT of the head is a little better. Report says “Mild decrease in size of cystic mass involving the left cerebellum." We will let you know when the chest CT comes back."

For those of you wondering about Bridget.  She had a safe trip back to Michigan and is now at Motts.  Unfortunately, her scans are not good.  Doctors have provided options and the family has chosen to continue to fight hoping to allow Bridget to have the best quality of life.  Her family remains faithful and are an inspiration to all.  Please continue to keep Lisa, Bridget and all the cancer warriors in your prayers;  there fight is not an easy one, but they often make it look easy.

Below is the update from Bridget's carepage for those of you who want to read the whole update.

"It has been a long 48 hours.

It is wonderful to be home back near our family, friends and our medical team. Bridget and I flew home VIP style in the University of Michigan Survival Flight small jet. It is really quite an amazing process. The team flew out to get us, A local ambulance company accompanied them to St. Francis to pick us up. Jo and Joe were our Flight team, along with our pilots. The plane is a very small jet (they wanted to know my weight!) When we arrived in Pontiac where survival flight keeps their plane, we were then transported by Huron Valley Ambulance to Mott, our hospital . The whole thing was pretty impressive and I am so glad we were able to get her home without worrying about risking her life driving without medical care. Yeah Survival Flight!!!

Bridget had the MRI we were all waiting for yesterday. It was a long day as they need to do hers under anesthesia. The result was not what we had hoped for. her condition has greatly changed since the seizures The neurosurgery fellow who has taken such awesome care of Bridget met us as we were going to meet her in recovery. The look on her face said it all. We so appreciated her careful explanation of what was there and that there were really no surgical options. I think both Brian and I could feel her genuine sadness that we were all back in this place again.

After we got our sweet girl back in the room,our oncologist, Dr. Robertson came and told us that the scan looked pretty bad. That there are now not just tumor cells throughout the brain, but also areas that are actual masses. This did not come as a surprise to either Brian or me as we have been suspicious all month that things were quickly heading in that direction.

We are not giving up on our brave warrior princess. After talking with radiation oncology and Dr. Robertson it was felt that radiation and chemotherapy could be of some value to possibly getting her a better quality of life with less symptoms of the tumor and to buy some time. It is not at all expected to be curative as there is disease throughout the brain and spine. That said, we feel Bridget is a fighter and we are going to give her every weapon that will benefit her in conquering this beast called cancer.

Things move pretty fast when a scan comes back looking like that and she has visibly declined so quickly from last week. We started radiation today. It will be a little easier on her this time as it face up and she can look at the beach scene on the ceiling. When we walked into radiation room, the only picture on the wall was of a zebra!!! She will have daily treatments for about 3 weeks. They can not do the same full dose as that would be too much radiation, so it will be about 2/3rds of what she had before. I believe we start chemo tomorrow, Avastin, a combination that with radiation, has been theorized to be more effective than only radiation. The researchers seem very excited about it's potential. She will also likely be starting a stronger chemotherapy that will probably hit her blood counts pretty hard. She may start that as early as this weekend.

The week has taken a toll on her abilities . Bridget has been quite confused since the seizures. She was having short term memory issues before, but short term memory may be nonexistent right now. it is hard to know as all the drugs and seizures can do this as well and she has been slammed by both. She is very sleepy, and not moving much. She hasn't walked since the seizures and really doesn't sit up on her own. Her speech is garbled and it is hard to understand. She can rattle of the names of her brothers and sisters and tell us her worries. she was concerned about whether we had Nora's car seat today and earlier in the week heard a baby and was worried about Mary (always the good big sister). She is on tube feedings now. Obviously, this is not where we hoped we would be.

We are sad and disappointed, but remain trusting that God's plan for Bridget is better than any we could design. The good Lord has already shown us his power with extra time we didn't think we had, not once, but twice. So we pray, we hope we believe and are assured that when and if she is called home it will be in God's time, not ours.

My friends, you have been with us in this battle and we ask that you continue to pray for Bridget and our family. Yes, pray for a miracle. We know that it is in His power. We also know that prayer changes things. Please storm Heaven that He heals her for His greater glory. Every Day With Joy!

"Do not fear, my little child, you are not alone. Fight bravely for My arm is supporting you" Jesus to St. Faustina Dairy 1452"

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 strength...it 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!