Pink the Rink and Go Gold

Thanks to the Bergeron family for putting us in touch with the coordinator of the Back to School Classic Belle Tire Hockey tournament.  It has opened the door to us joining up with the Lakeland Hawks' efforts to raise awareness for cancer.  This is their third year  "painting the rink pink" and while players and fans will be wearing pink, they will also have gold childhood awareness ribbons on their helmets (thanks to the Millen family of Paint Protection Plus for making the decals!)

These young  players are taught to play for a cause bigger than themselves which just happens to be exactly what the  "A" in BLAST stands for!  Their sticks will be taped pink and will have Lisa's name written on them.  They have also offered to let Lisa do a ceremonial puck drop at the start of the game if she feels up to it.  This is definitely a step in the right direction of raising awareness and

More Awareness = More Attention = More Funding = More Research =

Improved Treatment and Possible Cure!

 

The Lakeland Hawks will be playing at 4:40 tomorrow at Dearborn Ice Skating Center (DISC), formerly named Mike Adray Sports Arena,  so if anyone is looking for something to do tomorrow afternoon you can go cheer on the Lakeland Hawks and applaud their efforts to raise awareness.

 

Please keep the prayers coming.  Lisa made it thru the week of chemo and so far her counts have not fallen....but...chances are they will plummet soon and quickly.  With all the colds and germs going around low counts put Lisa at great risk.  She is experiencing pain again and requiring more meds to keep it under control and seems to fatigue easy...this could be from the disease or from the chemo...only time will tell.

 

For those of you keeping tabs on Bridget...below is what her mom posted today. Please continue to pray for these girls.  And, yes, I'm still praying for the miracle...."if you have faith, everything you ask for in prayer, you will receive." (Matthew 21: 22)

 

Still in PICU

Posted 2 minutes ago

It has been a long week since my last update. We have been inpatient at Mott for two weeks now and in the pediatric ICU since last Friday. You begin to lose track of the days in a hospital as the days and nights all begin to run together.

We have been on a bit of a roller coaster as they try to stabilize Bridget's sodium levels and control seizure activity. We came up to the ICU because some of the seizure drugs they might need are pretty heavy hitters that can relax the breathing so much she could require intubation. It is a tricky mess to get the sodium under control as brain tumors and injuries often cause the body to either dump salt (salt wasting) or cause a hormone imbalance that causes the body to conserve water effectively diluting it's salt reserve (SIADH). It is a delicate balance as she appears to maybe have both conditions.

Seizures can be caused by sodium deficiency and Tuesday Bridget had 8 seizures while on EEG monitoring, None of these were particularly scary, though the longest was 4 1/2 minutes. If you didn't know Bridget you would probably not have even noticed them. We fear, however, that the seizures if caused by tumor will increase in frequency and intensity. Seizures are terrifying. Please pray that we will find the right balance to be able to bring her home with seizure activity under control.

Bridget is extremely fatigued and her little body is conserving its energy. She is barely awake during the day and barely moves even while sleeping. The nurses come into to turn and move her regularly. She is swollen from excess fluid. There are so many reasons she could be so extremely exhausted. She needed a transfusion of hemoglobin (red blood) . Red blood carries oxygen so it can cause extreme fatigue when it is low (anemia). The seizures and the meds used to control them can each cause extreme fatigue. They needed to give benedryl before her transfusion. That stuff alone knocks her out. So many things that could leave her completely wiped. Of course, the real concern is that the fatigue is just the cancer taking its toll.

It is likely they will move us back to Floor 7, the oncology floor, today or tomorrow. She seems to be stabilized on the sodium levels and seizure free right now. She sleeps quite peacefully. She had a number of visitors this week, friends from here at the hospital, school, camp and church. She opened her eyes and interacted a little with many of them. We feel incredible support from the messages of love on this page and sent and brought to us.

We have spoken with both palliative care and Angela Hospice. Our plan is once she is stabilized to bring Bridget home for hospice care. With children hospice care can be coordinated with continued treatment. We still hope that we can get another round of chemo for Bridget and that can be done even while in hospice. Angela Hospice believes in the “nest is best” philosophy so that children are surrounded by the people and things they love and are familiar with. I wasn't particularly comfortable with this two years ago, but now that Bridget has had our den downstairs as "her room" for the past 6 months I think this is the best plan.

Bridget is not really active now, but hears a great deal even when we think she is asleep. Last Friday I had a friend bring me some rosaries that were blessed in Bethlehem and we were talking quietly about them. We then figure out that Bridget was trying to say something. When we went to ask her what she said, she wanted to know how many decades of the rosary (grouping of prayers meditating on a specific event in the life of Christ) she needed to say! I told her as many as she wanted and gave her one of the rosaries.

We were thrilled with the ND victory and all the MI fans who "converted" to fans or didn't mind the victory as much as usual just for Bridgie. I watched the game at the hospital with her. Bridget's nurse painted a big ND on her EEG head wrap. Like her sister Catherine and the rest of the Notre Dame and Saint Mary’s students, she was wearing a lei to honor Manti Te'o, the ND player who lost both his grandmother and girlfriend to leukemia a couple of weeks ago. She slept through most of the game, but she knew it was on and that was enough. By the way, please keep Catherine in your prayers as well. She is loving her freshman year at Saint Mary’s, but being away from Bridget during these days has been very hard on her.

We are sad, but there is a peace and joy in Bridget's room every day. We are treasuring our time and delight in the little interactions that happen when she’s awake – a nod of the head, a thumbs up sign, or an attempt to stick out her little tongue. We are continuing to beg the Lord to heal Bridget. Please continue to ask God for this mercy. From her bed, Bridget continues to teach us about strength and faith, love and bravery, suffering and its value. We know we will never understand why this has happened to her, but we have seen the evidence that God has used all that she is going through.

Thank you, friends, for all your support. We feel the love and prayer that surrounds us. We are so very grateful.

Every Day With Joy!

28 Kids diagnosed with cancer every day

Sadly, a childhood friend of mine just shared that yet another child has entered the war.  Her 18 year old son's best friend was diagnosed with a brain cancer after a 9 hour biopsy surgery on Monday.  His name is Ian and he is 17 yr old  freshman at U of M.  Please send up some prayers for Ian and his family.

Thank you to all of you who have offered prayers, kind thoughts and words of inspiration as Lisa continues her fight.  As usual, she looks great, all things considered.  Today was day 3 of chemo and so far she's been to school each morning, seems to be feeling ok and her counts are holding.  She continues to make us smile and laugh with her independence and humorous one-line answers. 

I love this little girl so much and continue to hope, pray and believe a miracle will occur to help her beat the odds.  A close friend of ours  has a distant cousin (Elisabeth Bergeron) who John Paul II declared Venerable, which basically means she needs a miracle to become a saint within the Catholic Church.  I say we all start asking and praying to Elisabeth to  provide us a miracle...it's a win/win situation in my book....she gets to become a saint, we get to keep our daughter here on earth.

Please continue to pray for Lisa and all the warriors.

Lisa's treatment plan

Yesterday was a tough day for me.  For the third week in a row, Lisa's blood counts came back showing her platelets were too low to administer the chemo as planned.  Add to that her hemoglobin is now dropping.  In a nutshell, they are now worried her counts are low because of active disease, not because of delayed recovery from radiation. I sit there stunned....active disease, ya think?  She's been having more and more leg pain since radiation ended, her head pain still exists, she needs frequent naps....how did I miss the fact that they were thinking the low counts were from radiation, not disease?   I've been in a panic for the last 3 weeks every time we miss chemo feeling like each week the cancer wins and gets another week to eats away at her body...that the disease is progressing and I can see it right before my eyes....I never even attributed the low counts to radiation....I always assumed it was disease.

Regardless of the past weeks, the team and I are now are on the same page Monday afternoon. 

Their first thought...can't do chemo...counts are too low. 
My first thought...you've gotta do something. 

Their next thought....we can do a bone marrow biopsy to see the progression of the disease.
My thought....seriously?? why?  we already know she has disease all over her body and in her marrow, what will the biopsy do besides cause pain and possible setback like last time?  Will this open up doors for other treatments? 

Their answer....no, it just reassures us.
My answer....we already know what we are going to find...we need to get creative and find something we can put her on.

After discussion and some reality checks the doctor decides to put Lisa on a low dose of a different chemo regimen making sure to remind me that we are nearing the end of the line, we are only looking to slow the cancer down, that there is no cure for neuroblastoma and we have to keep in mind that our treatment plan should be doing least harm.  Translation...this chemo could actually make things worse as it impacts Lisa's counts making her more susceptible to infection and sepsis.  I numbly nod...I know, I just don't want to accept it....I'm still hoping to prove everyone wrong and begging God for a miracle of health for Lisa and a cure for this cancer.

We progress to the infusion area and my phone- that gets no reception in the hospital- receives one text message from Bridget's mom, Louise,  that they are in ICU if we want to visit.  I leave Lisa with her nurses and go up to see Bridget.  Once again I find myself in denial and think Bridget does not look so bad despite the fact that her head is wrapped and she is hooked up to machines.  I notice only that her head bandage is adorned with a Notre Dame logo, she lays peacefully, she seems aware and offers small smiles in response to her mom's voice and other things that happen in the room.  A deacon is in the room and offers communion to all including Bridget who swallows it once it is broken into the tiniest pieces.  Louise and I chat briefly...she seems at peace and accepting of God's plan. I am torn, shattered inside, angry, unforgiving, not ready to give up, so damn mad that these children and these families have been put through all of this.

I leave the room numb and go back down to infusion.  I am even more conflicted as I watch my warrior rally and do arts and crafts and make everyone smile with her humor. I so want the happy ending we seen so often in Hollywood movies.  We've bounced back so many times it seems impossible that we won't continue to carry on.  My mind still embraces the happy ending that somehow she grows up, graduates, gets married, has babies.  Why shouldn't she be blessed with this? While I still hope, believe and wish for this, in the back of my mind for weeks now, I keep hearing a "canon sound".  For those of you who saw Hunger Games you know what this signifies.  The sound that plays in my head leaves me weary and tiptoeing through each day. I find I am holding my breath and reminding myself that while Hunger Games ends with the underdog being victorious, children still died.  The odds are against us here and I feel like I am just waiting for the canon to sound.

I pray that I am wrong and that God grants us the miracle I so desperately want.

Please continue to pray for all our cancer warriors and their families.

Devestating news...Bridget the Brave battle nearing the end

I can barely type these words.  As we come off our high of hosting our fundraiser, the very reason for doing it smacks us in the face.  While I have more good news to share about some going on's with the Gold ribbon, I will save it for another post and ask that you read the update on Bridget that I copied from her CarePage.  Please pray....tears falling....

Sad News

Posted 56 minutes ago

My heart is heavy and the words do not come easily. There is no fancy way to say it, just the truth. Our daughter is dying. Our sweet girl whose 12 years have brought us incredible joy will soon enter a hospice program. Our little flower is fading right in front of our eyes daily.
The MRI came back with tumor progression yet again. This is the likely cause of her fatigue that had her asleep over 23 hours yesterday. Her counts are low and the current round of hardline chemo hasn't done anything to hold back the tumor. There is another chemo we will try if her counts rebound, but we understand the likelihood of this working when the tumor hasn't responded to the big guns is slim.
We know God has a perfect plan for Bridget. We know He has not forgotten or abandoned us. We know He could heal her this very minute. We also know that healing doesn't seem to be His plan right now. We are so grateful for the time He has given us with this beautiful child, time we didn't think we had in 2009, 2010, 2011, and 2012. So we pray, we beg, we wait, but most of all we hope. We place our trust and hope in the Lord who has carried us with love through these difficult days.
We will be in the hospital at least through the weekend. They are having trouble getting Bridget's sodium levels balanced. She had another seizure today. This could be from either the sodium or disease progression. The plan is to get her nutritional needs met with either the TPN (iv nutrition) or an ng tube. she had an allergic reaction to platelets this afternoon.As I write this her blood pressure is elevated without an obvious cause. Lots of things to sort out before we come home.
Please pray for us in the days ahead. Pray for wisdom in the medical decisions we make on treatment, nutrition, medication, and hospice and the medical teams that support us. Pray for Bridget that the Lord will bless her with peace and understanding, free from worry or fear. Pray for our family, especially Bridget's siblings. We have been on this road for 3 1/2 years, yet it is so hard to truly imagine our days without her gentle spirit with us.
One of the readings in this morning's divine office seemed so appropriate as if it was written just for us...
We are not discouraged,rather,although our outer self is wasting away, our inner self is being renewed day by day. For this momentary light affliction is producing for us an eternal weight of glory beyond all comparison, as we look not to what is seen, but to what is unseen, for what is seen is transitory, but what is unseen is eternal. - 2 Corinthians 4: 16-18
We thank all of you for all of the support and love you have extended to our Bridget and our entire family. even in the midst of this suffering, we are blessed.
Every Day with Joy!

We had a BLAST

Sorry for not posting this sooner....apparently I'm getting old and it now takes me 48 days to recover when I have a BLAST:)

Thank you, thank you, thank you to all those who volunteered and those who came out to join us in BLAST.  Final count is not in yet, but we estimate that we raised between $5,000 and $6,000 this event:)

Yeah...that money will help sponsor a wish child at Rainbow Connection and also go towards research at U of M Motts.

We are still in the month of September and continue to take donations and sell items.  If you missed the event, would like to make a donation, or want to buy some BLAST items...please email info@BLASTnb.com.

Keep up with the Go Gold for the next 2 weeks.  We are working with PCCS highschool teams to wear Gold ribbons at the remaining games this month and may be able to outfit some hockey teams with gold ribbons in a tournament an the end of the month.

More Awareness = More Attention = More Funding = More Research =

Improved Treatment and Possible Cure!

1 More day to BLAST...who has spirit?

One more day to the big event...wohoo....we are busy little bees that is for sure.  If you are interested in helping out tomorrow be sure to give us shout....we've got lots going on with raffles, food, prizes, games...what is that old saying ...the more hands, the lighter the load??

Just a quick shout out to St John Neumann for showing so much spirit and Going Gold.  Not only are they allowing us to use their facilties for the event, they've allowed us to plaster their doors and lawn with signs AND the girls volleyball team laced up their shoes with GOLD!! Way to go girls!

Going Gold is also happening at the Plymouth Canton Highschools....we've gotten the okay for some of the cheerleaders to wear Gold Ribbons and the football players will be placing Gold Ribbon decals on their helmets (thanks to the Millen family at PaintProtectionPlusLLC for making this happen!)

Central Middle school is selling suckers to raise awareness and money.  East Middle school has fliers posted.  Hulsing Grade school is sending home fliers.

So, what are you doing to raise awareness?  Are you handing out ribbons, selling suckers, are you wearing GOLD?  If you don't have any, come see us tomorrow...we'll help you out:)

Calling all Hulsing Parents

Hello Hulsing Parents

It has come to my attention that fliers were not send out to Hulsing families regarding the BLAST fundraiser this weekend.  My apologies for that...having moved the event to September along with having  a new principal at the school...well, some things just didn't get sent out like they were in the past.  Hulsing has posted the flier on their website, but I'm not sure how many people actually check that website.

We have many new staff and students at Hulsing this year and  I'm sure many of them are not aware of BLAST and the great turnout and contributions that Hulsing has made to this effort the past 2 years we've had it. 

Obviously those of you reading this already know about the event.  I'm asking that you please share the information with others in our Hulsing community that may not be aware of this event.  Share via word of mouth, email, our website www.BLASTnb.com or the LoveYouLisa fb page.

It takes a village to raise a child...Hulsing is part of our village.  We need the village and many more to find a cure for childhood cancer.

2 more days to BLAST...r u coming?

We've got a great chef who makes the most fantastic sauce in the world.  We've got raffles, gold awarness ribbons, Blast Pins, bracelets, some games for the kids, euchre for the adults (you don't have to be good or have a partner, you just need to know how to play!) .  We are even working on getting tv's so that we can watch college football games!!

It's going to be a lot of fun and it's for a good cause!  R U COMING?!!

It's THIS Saturday---September 15

at St. John Neumann - 44800 Warren Road in Canton!

Dinner and family fun from 5-8, Euchre starts at 8:30.

15 years ago, in the hospital

Maranda was born!!! Yeah...finally a great memory of being in a hospital.

Lisa was supposed to have chemo this week but after sitting in the clinc for almost 5 hours yesterday, we found out her counts were too low.  Very disappointing, aggravating and frightening as this is yet another week with no treatment which only gives the cancer a chance to become victor.

We are facing this setback by throwing ourselves full force into preparing for BLAST this coming weekend.  There are ribbons to make, raffles to create, signage, organizing volunteers....definitely enough to distract us.

We are not the only ones on a mission to raise awareness re:childhood cancer and it's need for awareness, funding and research.  Last week, the Stand Up 2 Cancer telethon was on and unlike previous years where childhood cancer was barely mentioned, there were numerous references about childhood cancer including Julia Roberts sharing the statistic  that cancer "kills a child every four hours in this country.", stories of two children with cancer being highlighted in different segments and having Taylor Swift perform her song Ronan.  A song so moving, it  took over the No. 1 spot on iTunes displacing Taylor's other song We are Never Ever Getting Back Together from the the No. 1 spot on iTunes where it had been for the last three weeks.

For those of you who would like to watch the show...you can see it here.  If you would like to hear Taylor Swift's song, click here....so much of it really hits home for me...you might want to grab a box of kleenex before listening!

So...it is happening...slowly, but it is....awareness re: childhood cancer is building which will bring funding which will provide more research which someday will help find a cure...hopefully that day is not too late.

And, we will continue to do our part and try to raise awareness by having a BLAST....hopefully you will join us in our efforts this weekend:)

Keep the prayers coming!




 

We've got spirit, yes we do

We've got spirit how about you?!  Are you a teacher, student, athlete, musician, employee, employer.....who are you and what are you doing to spread awareness?

We here at the BLAST team and LoveYouLisa support squad are looking to see who can step up and help spread awareness.  Will you be the one to spread awareness to the most people?  Will you be the one to spread it in the most creative way?  Perhaps you are a cheerleader and convince your squad, team and fans to wear GOLD ribbons, perhaps you are teacher and you sell Blow Pop Suckers to "Blow Childhood Cancer Away", perhaps you decorate your work lunchroom in GOLD facts about Childhood Cancer...the ideas are endless....send us your pictures of how YOU are spreading awareness.

CALLING ALL CHILDHOOD CANCER WARRIORS!!!!

In honor of Lisa and all the other childhood cancer warriors, we are having our third annual fundraiser...BLAST...on 9/15 at St John Neumann Church in Canton.

I want to put together a Childhood Cancer WARRIOR WALL and am looking for warriors who would be willing to share some pictures and information for the wall.

If you know of a child who has waged war with cancer and is willing to share their fight with us, please have them email the information below to info@BLASTnb.com

Age Now:
Age at Diagnosis:
What city do you live in:
Name of school:
Favorite thing to do for fun:
Favorite sport:
Is/was (s)he on any teams/clubs
Favorite pro team:
Hobbies:
Favorite color:
Describe personality in 2-3 words
Finish this sentence: "Child's name" can........
Name of cancer diagnosed with:
What type of treaments she had/will have
Cure rate for this type of cancer
Attach a few pictures of your warrior

Let's keep adding candles to this cake!!

How may other parents light the candles on child's birthday cake and wonder if this will be their last?

 

1 out of every 5 children diagnosed,

will not survive past 5 years.

 

Each Day, 7 children are lost to childhood cancers

 

Help us raise awareness and funds.  Join us at BLAST on 9/15.  More details at www.BLASTnb.com.