Monday, December 17, 2012

Monday, December 17 - Chemo This Week



Chemo week this week and I [dad] will be taking Monday’s for the foreseeable future.  The past two weeks have been wonderful, all things considered.  Lisa has been energetic and her pain has been very manageable.  She’s been staying in school until lunch the past two weeks, participated in the children’s mass at church, and brought up the gifts during the service again.  We can’t explain why she’s doing so well, and we’re not sure we want to know. We’re just living in the moment, and these days the moments are really good.  Prior to beginning this post I asked Lisa what she would like to say to everyone reading this and she said to “tell them that I love them”.  So there you have it folks, you are touched across the void by Lisa’s love.

Monday, December 10, 2012

My little Christmas Miracle

I know the posts have been few in the past month and the ones that have been written have been by Mike.  The death of Bridget and then Ian right after really robbed me of hope and I found myself struggling to stay positive.  Thanksgiving came and while I mentally counted my blessings, I found no words with which to fill the blog even as I sat on the beach of my beloved Topsail, NC. 

The Monday after Thanksgiving pushed me into an even deeper funk. It was chemo Monday for Lisa and the day was playing out just as the prior 2 chemo Mondays had.....awful.  I woke Lisa and watched her as she struggled to sit up in bed; the pain in her legs so bad, I needed to assist her.  Once she was out of bed she had difficulty walking....but being 8 and stubborn she adamantly screamed and told me she didn't need help.  Helpless, I stood by and watched her painstaking tiny baby steps to the bathroom wondering if she refused help because she was stubborn or because having someone touch her made the pain worse.

The morning involves a slow move up to my bedroom where she could "watch" tv while sleeping.  Around 11:30  the tears began as I help her get up and into the car to go to the hospital.  Once there and the car parked, we begin the slow, painful walk across the parking structure because no wheel chairs are available in the structure. My little warrior rallies and waddles slowly towards the wheel chairs by the door.  Once in one, she settles back as we make our way to the lab for her blood draw.  The lab tech lets her to stay in the wheelchair for the blood draw which allows Lisa to save her energy and minimize her pain.  We leave the lab and go upstairs to see the doctor.   The wait is long as is typical for a Monday.  Lisa spends most of her time napping in the wheelchair, not wanting to leave the comfort of it to lay on the bed.  After about an hour, the doc and nurse come in.  Lisa wants nothing to do with anyone and the exam is cut short by her insistence that she needs to use the restroom.  The nurse witnesses Lisa's painful steps from the wheelchair to the bathroom and the look on the nurse's face is sadness and horror.  No one is used to seeing spunky little Lisa so beaten.

Her chemo nurse secures a room with a bed for her to receive infusion.  We are there until 7 pm.  We have trouble managing Lisa's pain even though she gets 2-3 extra boosts of morphine on top of her normal pain meds.  I spend most of the day praying that history repeats itself and that this chemo Monday and things will get better with each dose of chemo she received.  The nurses look at me with concern in their eyes and encourage me to speak with palliative care to up Lisa's pain meds.  I understand the logic in this because no one wants to see Lisa suffer and I try convince them that Lisa is not experiencing this type of pain on a daily basis.  I tell them that chemo Monday is awful but that in the past two rounds, with each day of chemo she feels a little better and her carry her into week 2 where her pain is still much less and we only need to give her an occasional extra dose of pain meds on top of her regular 3 doses a day of potent pain relief meds.  As we go thru week 3, her pain generally increases and so we increase her dosage of extra pain meds.  As we come to the end of week 3 and approach chemo Monday, her pain has escalated but we can normally control it thru the weekend with the extra meds and the knowledge that Monday will be chemo Monday and we will restart the cycle.  I'm sure the nurses are concerned that I am in denial about Lisa's actual state of well-being, especially since when it was time to go home I  cannot get Lisa to budge from the bed.  It takes 3 nurses and another dose of morphine to carry her from the bed to her wheelchair.  Another conversation about upping her pain meds and how I need to talk with palliative care ensues. I'm not even sure how I get her from the wheelchair into the car.  Sheer determination and tears from both us were certainly part of the process.  The ride home is quiet and followed by early bedtime for both of us.

Thankfully, history repeats itself and my prayers are answered as Tuesday turns out to be a much better day.  Lisa is up and about and when Mike takes her for her chemo, he says the nurse's jaws drop open as Lisa walks in on her own two feet.  She is still having pain, but not nearly as bad as the day before.

And so, as with the two prior cycles of chemo, each day has progressively gotten better and has everyone scratching their heads and wondering how exactly a round of chemo can have such a huge impact.

I find myself questioning how things could go from so devastatingly painful to so much better in just a few days....could chemo really be that effective?  Even though I expected Lisa to have better days in week 2, I find myself being more astonished each day this past week at how much better she is doing.  Normally, school days involve her taking the bus to school (her choice) and upon entering the classroom, telling her para pro she is ready to go home.  Her para pro will use every trick in the book to get Lisa to do some schoolwork.  They will work for about an hour, than Lisa will normally rest on the cot they have in the room and around 10:30 I will receive a text to make sure I pick her up by 11:30 so she can come home and nap for the afternoon.  This last week, not only has she not required many extra doses of pain meds, she has actually stayed at school until lunchtime on 3 days.  I've been amazed.  She has lasted longer at school and even her siblings have noticed that she seems to be awake more and is looking better.

Today at church, every single one of us had our jaw drop open as Lisa sprang from her chair to go to the "children's" portion of the mass.  In her 8 years of life, she has gone to this maybe 3 times and that was when an older sibling escorted her.  Normally, mass time is nap time for her and we take up 3 extra seats as she stretches out on them and snoozes.  We all watched in astonishment as she paraded out with the other children to go to their room waving to us as she went.  Her return was even more amazing as she led the children in the procession of bringing the gifts up to the alter.  She carried the hosts (and her baby, of course) from the back of the church all the way to the front and presented them to Father.  Honestly, I wished I had my camera....it truly was a moment for us.

So....what has made this difference?  The question plagued me all last week. We really did not do anything different in Lisa's course of treatment. We had one additional day of chemo this round, but surely that one day could not have had such lasting effects. While I joked the new baby doll she got was motivating her, I didn't really think that was the answer.  Thursday night, as I got ready for bed, and was once again smiling at how great a day Lisa had and wondering what had made the difference...a thought resonated thru my mind.... Louise's novena.   Louise is Bridgette's mom and during my deep funk I glanced a message from her on my phone that said she was starting a novena for Lisa.  I had not paid much attention at the time because of my mood.  As I stood there Thursday night, I realized that Lisa had started improving about a week prior....just about the time that email had come thru.  I ran to the computer and checked the post.  On Nov 30, the last day of chemo week, Louise had posted:

I will be praying this novena for Lisa starting today. This powerful novena was prayed for Bridget the year she had a miraculous recovery at Christmas. Novenas are not magic. The answers whether direct or spiritual are from persistence in prayer(ask and you shall receive) God doesn't always give us what we ask for specifically, but he always gives us what we need. I post in case others would like to join me. Happy Advent!
 
St Andrew's Novena starts today! It is piously believed that whoever recites the prayer below fifteen times a day from the feast of St. Andrew (30th November) until Christmas will obtain what is asked. Imprimatur: +MICHAEL AUGUSTINE, Archbishop of New York, New York, February 6, 1897
 
Hail and blessed be the hour and moment in which the Son of God was born of the most pure Virgin Mary, at midnight, in Bethlehem, in piercing cold. In that hour, vouchsafe, O my God! to hear my prayer and grant my desires, through the merits of Our Saviour Jesus Christ, and of His Blessed Mother. Amen.
 
More information can be found here
 
I cannot say for certain that this novena is what has made the difference in Lisa's condition.  I can say that it certainly has made a difference in my mindset.  Seeing Lisa feeling good and being reminded that so many of you are cheering for her and praying has given me the boost I needed.   A weight has been lifted, for the time, from my shoulders and the worry has faded and been replaced with smiles as I see Lisa with a little skip in her step.  I thank all of you for your prayers and support and for giving me a little Christmas  "miracle".
 
 

Wednesday, November 21, 2012

Happy Thanksgiving

We apologize for not posting but as usual (for us) no news is often good news. Lisa has been doing well the past couple weeks.  In fact after her last round of chemo her white and red blood counts increased rather than decreased which is great.  You all must have been have been sending her a lot of love. Thank you.
She continues to sleep a lot (16 of 24 hours a day) but when she's up, she's running the show.  She truly is a force and a joy to be reckoned with. 

Happy Thanksgiving everyone.

Monday, October 29, 2012

Scan Week

Scans tomorrow [Tuesday] and Wednesday and a bone marrow biopsy [ouch] on Halloween. Send Lisa your best prayers and mojo. Love to you all! Thank you!

Sunday, October 21, 2012

Stay the Course

Sorry for no updates for the past two weeks.  Lisa received another round of chemo this week.  She seems to handle the drugs well and so far the only side effects has been more fatigue.  She still is in good spirits and continues to make us smile and laugh but she does tire easily.  She barely makes it through a 1/2 day of school and then comes home to sleep for 4 hours.  She will be up for an hour or two around dinner time and then rests and watches tv, colors or plays with her babies until she settles in for the night around 9 pm. 

She generally wakes up with a smile and some days has more pain then others.  Last week she was really having difficulty walking and experiencing increased pain.  This pain does seem to subside some with the chemo which makes me feel that it does still have an effect on her disease.

Lisa will go for bloodwork this week and next week and than scans. Based on the way she is moving and feeling I am sure we already know what the scans will reveal...that her cancer continues to progress.  But, we still continue to hope and pray.  We have signed paperwork for the doctors to enter Lisa into a "gentics" study where they can further analyze the tumor that was removed from her years ago.  While this will not provide a cure, it may open doors to some other drugs that her cancer will respond to.

I ask that you continue to pray for Lisa and all of us...the road has been long and I'm feeling a bit weary but as we say in BLAST....we continue to stay the course.

I also ask that you pray for Ian...he is the young man I know of thru my childhood best friend...who 7 weeks ago he moved onto u of m's campus to begin a new adventure just recently was diagnosed with  medullablastoma that has already metastasized to his spine. He started radiation last wednesday and suffered a brain swell yesterday and was rushed to St Mary's hospital where he underwent emergency surgery. He is still in ICU and there is fear of brain damage.

Life is precious, please hug your loved ones and remember to live life fully and live as if today is your last day...because you never know, it just might be.

Sunday, October 7, 2012

Bridget the Brave has earned her wings

Tears...that is all I have...the funeral will be Wednesday morning, October 10 at Our Lady of
Good Counsel in Plymouth. There will be an all day wake on Tuesday and possibly a short visitation for family on Monday evening. Below is what Bridget's Mom posted yesterday:



Our sweet daughter Bridget Therese was born into eternal life yesterday evening, October 5 at 6:52. If death can be beautiful and peaceful, hers was. She was surrounded by family and love, as well as tender care from her medical team.

Bridget’s little siblings were with us for part of the day. Our dear friend Fr. Ed Fride spent the afternoon with us celebrating the votive mass of Divine Mercy ending close to the Hour of Mercy at 3:00. Directly after mass, Bridget’s little siblings said their goodbyes. At 3 o’clock the medical team began the process of removing the tube and making her comfortable.

Bridget was a quiet warrior, brave in battle until the end. Everyone thought she would breathe her last rather quickly, but I am grateful that did not happen. God allowed us very special time together as a family to say goodbye without tubes. We even brought the little guys back to say goodbye without all the scary stuff attached to Bridgie. We had our last family photo. We prayed, we sang, we cried, and we even laughed a little. There was joy in knowing she would finish the race victorious and meet her Lord. As one of the cards her classmates sent her said…. “If you don’t get better you will get to meet Jesus…how cool is that?!” Cool, indeed.

We were amazed at the outpouring of support for Bridget and our family throughout the entire day. The explosion of her Bridget the Brave poster and zebra hearts all over facebook deeply moved us. The zebra colors that everyone wore throughout the day brought smiles to our faces. Our favorite was her friend Jeff, the Camp Quality Director, who wore a full zebra suit and took his picture with a sign that said I love you Bridget! We received news of masses and prayers offered in Rome, Germany, Ireland, Togo, Brazil, France, India, Uganda and all over the U.S.A. Fr. Gabriel Richard High School gathered with over 500 people to pray the Divine Mercy Chaplet after school hours, as did Huron Valley Catholic School, and Christ the King parishioners. Masco Corp. where Brian works had a room set aside for prayers at 3. I received word from so many places that our family was being lifted up. We were carried on that wave through this difficult day. How truly blessed we are with so many friends and strangers who somehow fell in love with our little flower. Your prayers are what brought us through the day with joy in the last minutes of her earthly life.

I will post more as soon as we make arrangements for her funeral and celebration of her life. We love all of you.

Every Day With Joy!

Friday, October 5, 2012

Live every day to its fullest..find a reason to smile:)

Lisa has had a very good week.  With a round of chemo under her belt last week, we are on high alert for low blood counts and other side effects.  She only required one transfusion this week and sailed right through that. She is looking pretty good.  She is moving pretty good, has less pain, smiles and continues to make people laugh.  Just now, at 7:45 in the morning, she batted her blue eyes at me and said "I have a sore throat, can I just have a tiny bit of ice cream...I'm sure it will make it feel better."  She then followed that up with assuring me that she had already eaten a "healthy apple" for breakfast.  So, ummm....yes, with that logic....go for it have a bowl of ice cream.  She added a bigger smile to my face when she grabbed the sprinkles to make it "even better".

So while Lisa still is having good days, unfortunately we cannot say the same for Bridget.  Below is her mother's post from yesterday.  If you can, at 3:00 today, please offer up prayers for Bridget and her family as they take her off the ventilator:(

Every Hour with Joy!
Yesterday's morning prayer seemed as if it was written just for us.
"No trial has come to you but what is human. God is faithful and will not let you be tried beyond your strength; but with the trial he will also provide a way out, so that you may be able to bear it. - 1 Corinthians 10:13
Oh Lord my strength and fortress my refuge in the day of distress- Jeremiah 16:19
What a beautiful and sad few days we have had. Our flower is fading. I want to be eloquent, but I am weary and the hour is late.

We have met with all the medical teams and they all agree that there is no hope of Bridget's current condition improving. We have had enough time to calm our worries that it might be a virus or seizures or other issues. This was important to us, especially since she has been in the ICU a few other times that things looked hopeless. This is the first time I feel in my heart they are right. Even that Christmas Eve two years ago, I don't think I ever really believed that we would bury our daughter in weeks or months. This time is different. The cancer has taken its toll. The time has come to take our Bridget off the ventilator,the machine that breathes for her and let her go to meet our Lord.

We will take Bridget off the ventilator on Friday at 3:00. We chose the time as it is the Hour of Mercy when Our Lord died on the cross, on the Feast day of St. Faustina, the apostle of Mercy. At that time our family will gather and say our goodbyes. We will wait and we will pray. I know we will be grieving, but I also know we will be joyfully remembering the gift Bridget has been to each one of us. Please surround us in prayer at that time. I believe it will be the hardest moment our lives.

Many wonderful moments have occurred the last few days. I promise to share some of them soon. We are so incredibly grateful to all of you.

Every Hour with Joy!

Friday, September 28, 2012

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!

Wednesday, September 26, 2012

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.

Tuesday, September 25, 2012

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.

Thursday, September 20, 2012

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!

Tuesday, September 18, 2012

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!

Friday, September 14, 2012

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:)

Thursday, September 13, 2012

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.

Tuesday, September 11, 2012

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!




 

Tuesday, September 4, 2012

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.



Monday, September 3, 2012

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.
 
 

Friday, August 31, 2012

Lisa turns 8!

Today is Lisa's 8th birthday.   Tomorrow is last day of radiation.  Scans will be in another week.

Lisa has been doing a lot of sleeping while the other kids have been getting in their last bits of summer fun.  The last week was spent going to their schools for their  "orientations".  Maranda and Chrissy's schools are status quo and no surprises.  Thomas starts highschool so we spent a few hours there getting him acclimated and making sure he was in the right type of classes with teachers who can work with his learning disabilities and help him be successful.  Lisa will be going to the same school but due to some school closings she has a new principal and there will be new teachers and students throughout the building.   We've got everyone squared away and ready to go and I think things should go smoothly next week...fingers crossed:)

Our focus right now is joining forces to raise awareness about Childhood Cancer.  Tomorrow is September...time to get your Gold On!!

Tuesday, August 21, 2012

Life is a Bumpy Cake



I make plans, God laughs.  I change my plans and God laughs harder.  All these little bumps laid before us are what they are. We can attempt to avoid them or we can slow down look a little closer.  Life IS a bumpy cake and sometimes, as with the cake, those bumps are the best part.

Eight years ago on August 20th I brought home two special little kids named Thomas (6) and Christina (5). I can vividly remember picking them up at the agency and thinking, “these kids are so adorable there's no way they’ll be with us very long”.  Less than two weeks later we picked up their 5 day old sister Lisa at a Sunoco station just North of Ann Arbor. Seriously.  So there we were at home later in the evening amazed at going from one child to four in the span of about ten days, and here we are 8 years later bumping along. Four kids, four bumps on a bumpy cake, coincidence?

So as you can see our four little bumps have grown. (Maranda is away with her cousin at the time of this photo) They are undoubtedly the best part because without them we’d be left with just a boring chocolate cake. Boring! There were, are, and will be more bumps (A certain neurotic Dalmatian named Chief comes to mind, BUMP) and we’ll celebrate each bump in turn. Maybe with a bumpy cake.

I’m recalling one unrelated bump on a hunting trip years ago.  It was dubbed an “incident” and it involved a leaky propane tank on a gas grill. After the flames were all extinguished and everyone was accounted for, I remarked “it’s starting to get funny now”.   I hope that when I look back on all the bumps I can still make the same remark because sure enough God will still be laughing.

--Mike

Sunday, August 19, 2012

We are having a BLAST:)

Lisa has been doing well, not great, not even comfortable all the time, but well in a "managing to keep the pain under control, making the best out of daily radiation, alternating playing and cat-napping every few hours" 7 year old way. We still have at least 2 more weeks of radiation to do and she has been complaining about new pain in her knee. They did an x-ray of her leg last week and we should know tomorrow if we need to radiate an area of her leg as well.

She is truly a fighter and we are all crossing our fingers and holding our breath in hopes that this extensive round of radiation to her spine will buy us more time...lots if we have our wish. I'm still believing and hoping for a miracle.

In honor or Lisa, and all the other childhood cancer warriors, we are having a BLAST!   BLAST 3 to be specific. BLAST is the fundraiser we did the last two years in and effort to raise funds for, and awareness about Childhood Cancer. I won't preach here about the statistics nor the limited funding directed to Childhood Cancer, but know that Childhood Cancer gets a very small percentage of funding for research and is the number one disease killer of children.

BLAST 3 will be on Sept 15 at St John Neumann Church. There will be a spaghetti dinner, bake sale, family fun games and a euchre tournament.
 
We picked September this year to coincide with the month that is dedicated nationally to raising awareness about childhood cancer and we will be aiming to color our world and yours in gold ...the color of the childhood cancer awareness ribbons. Our goal is to one day have the gold ribbon as universally recognized as the pink ribbon.

Check out the website www.BLASTnb.com  for more details  and please plan on joining us:)

For those of you interested in helping, we are in need of:
  • Help with website coding
  • 100 Colored Copies of different documents
  • Gently used children's books and stuffed animals for prizes
  • Raffle donations or baskets
  • Volunteers for Sep 15
  • Individuals who can spread the word to community schools and sports teams and encourage them to wear gold during the month of Sept
Please email info@BLASTnb.com for more information, questions or suggestions.  Thanks!
     

Friday, August 17, 2012

Update


It's been a busy week and Lisa remains comfortable, active, happy, and by most outward appearances nobody would suspect her predicament.  She’s sleeping a little more, going to radiation therapy M-F, and taking pain medicine regularly which may account for her sleepiness.  Please continue to send her your very best while she is getting treatment.

Yesterday we met with a representative from Angela Hospice. It was emotional to say the least. We may or may not accept their assistance at this time. We are still deciding.  All of the kids were present during the discussion and affected by the candor of the discussion.  Maranda was moved to tears and later in the evening poured her emotion onto paper. It was so beautiful I had to share.

Saturday, August 11, 2012

Surely, it is the prayers

Well, I'm all black and blue....from pinching myself. I cannot believe we are being discharged today. As I look at my daughter who is walking around caring for her "baby" and is happy as can be, I am still shaking from the memory of the child I carried in here just a short 4 days ago. A child who was in severe pain and incapacitated by the cancer in her leg bones, pelvic bones, shoulder, bone marrow, spine..... I suppose we could give credit to all the meds; ones that reduce inflammation, ones that relieve pain, and chemo and radiation that attempt to beat the cancer back....but surely, it really must be the prayers. As I attempt to wrap my head around the events, I still cannot make sense of the what or the how. How did we go from a "mixed bag" of results to "extensive" involvement? Apparently, part of it was due to the type of scans done. Following normal protocol she had her MIBG Scan, CT scan and bone marrow biopsy. An MRI of the spine was not part of the normal regimen. I find that a little surprising given the known progression of this type of cancer and doctors repeated suspicions after the brain activity last year that spine would be the next place Neuroblastoma would show its ugly head. I wonder had we been doing a MRI of the spine regularly if we would have known sooner and been able to treat accordingly. I most certainly will be asking the doctors about that. Not much we can do about the past except to learn from it and move forward. While Lisa looks and feels much better, the knowledge that her body is riddled with more cancer than ever before is heart-wrenching and terrifying. The "what-if" and "when" circle my brain. I am not ready to let go...but are we ever??? I say that and then start to wonder why us? Not "why us, cancer?" but "why us, blessed with more days?" Knowing all the other warriors who have fought and prayed but lost the battle makes me wonder why us? Why have we been blessed with more time and how do continue to be the recipients of those blessings? I know the other families have faith and believe just as we and all our readers do...so why are those children now gone? I by no means want to question our blessings but do find I'm holding my breath wondering how long I have my daughter? Honestly I never want to be at the point where things are so bad and painful that I'm ready to let her go. I want her to grow up, go to college, get a job, get married and have a real baby that she can walk around caring for. This battle with Neuroblastoma is on-going but I will take that rather than it being over, because over most likely means cancer is the winner and I'm not ready to accept defeat. So, as faith teaches us, I will curb my questions and wondering why and accept God's Graces and believe that he will continue to bless us. Please continue to pray because even though Lisa looks so good, her little body is fighting a major war with an opponent who is not likely to surrender and the only way we are going to win this war is if God chooses to make us the victors. Live life fully...don't stop believing...keep on praying.

Thursday, August 9, 2012

She is looking better

Things seem better. Last night was a bit rough but we kept pushing the pain meds, upped Lisa’s steroids and started her on chemo. A grumpy morning turned into a good afternoon. I’m not convinced it was the meds, I think it had to do with the prayers and Ms. Lisa who came to visit. Princess Lisa has a special bond with Ms. Lisa and seems to always perk up when she is around. I’m starting to think we should bottle Ms. Lisa’s spit or something and transfuse it into Princess Lisa. When Ms. Lisa came in the room, the princess smiled, sat up and proceeded to eat, talk, play, get out of bed, walk to the bathroom and went for a spin in her wheelchair. Princess Lisa was her bubbly smiling bossy self for a good 3-4 hours. Once Ms. Lisa left, Princess Lisa took a few cat naps and was game to go out and check out the Motts Thursday night pizza party for a few minutes. While she is still having pain, we seem to be getting a much better handle on it. The elation of seeing her feeling better and getting about is counteracted by the heartache of having to meet with the palliative care team and discuss the options for assuring her comfort while they assess our grip on reality and mental ability to cope with the looming “end” based on statistics. That being said…there is still hope. The radiologist spoke with me tonight and he seemed confident that radiation can reduce the cancer in the spine. If he is correct and Lisa can handle the chemo and radiation the next two weeks, there is hope that she will go home and be able to be active and pain free….the unanswered question is for how long. As with all of us, there is no answer to that question but cancer sure makes us ask it a lot more. She will receive chemo for one more day and radiation starts tomorrow at 7am (ugh!). The current plan is she will stay in here to assess how she handles new pain meds, the chemo and the radiation. If all goes well, she will most likely coming home on Monday. It is now midnight and princess Lisa has decided it is a good time to color. Her nurse was in and asking her if she had pain and she said “maayyybbeee”. I said she was a “Pain in the butt”. Lisa didn’t miss a beat and retorted “No, pain in the ass”. Good Night!! Keep the prayers coming. Don’t stop believing.

Wednesday, August 8, 2012

MRI Results

Lisa's latest scans confirm that there is new disease [Neuroblastoma] evident in the spine as well as soft tissue growth around the spine.  Additionally there is new soft tissue growth in the neck area.

So the plan is this: (1) Lisa will start chemo tonight and continue again on Thursday and Friday. (2) She will begin radiation therapy Thursday to target the aggressive growth around the spine. (3) We'll have to begin pain management regimen and palliative care.

She certainly won't be discharged until the fever subsides for more than 24 hours.  She spiked to 103.1 coming out of the MRI, which will keep her her at least until tomorrow evening but I seriously doubt we'll get out before the weekend.

So there's where we are at.  Please continue to send Lisa your best. We'll update the blog as we get more to post.


Prayer chain

I was just getting ready to head out the door, but have been stopped by a very loud nagging in my head that has directed me to post a request for a prayer chain.  My mother always said when two or more people pray together God will answer. I ask that all those of you who are reading, please set your watches for 11am, 2pm, 5pm and 8pm est today and say a prayer for Lisa.  Pray that she recovers from this and is able to have many, many more pain-free, healthy quality days with us on earth. 

Mike's update from the night was as follows:
She’s resting and sleeping so I’m guessing that her pain is manageable while she is laying still. She did get up to go to the bathroom twice during the night with a lot of pain. She’s very unsteady too but that is in part due to the heavy meds. She did wet the bed a little the first time so she’s out of underwear and pants and into those peach diapers. The second time the diaper was wet too.
Last morphine was given at 11PM last night. After midnight her breathing slowed to only 7 breaths per minute, her oxygen level was still good, but they’re temporarily holding off on the morphine so she’s not too out of it. She’s not complaining and resting quietly.
She had a fever of 101.3 this morning at about 5:30 so they gave her Tylenol.
And she just asked me for a hug.

Please Pray, Pray, Pray

Please pray....Lisa is not doing well....she has had pain in her back ever since bone marrow biopsy last week.  The pain progressed to her legs this weekend and walking became more and more difficult.  Today I went to check on her before I left for work and she looked awful.  She had spiked a temperature and could not get out of bed.

I took her to ER where we spent most of the day until we were finally admitted to the 7th floor at about 3:00.  She is being treated for possible infection but until blood tests come back we have no way of knowing what the problem is...an infection or cancer progressing. We now wait to see what cultures show over next few days and whether she can regain her strength. This situation has made isolation radiation too risky and now we wait to see if she can recover from this to determine next steps.

Her spirit is still strong, but her body is aching.  I have much more to say, but I cannot write, the tears have overcome me and the fear has me shutting down.

Pray, pray, pray....it cannot be her time....pray, don't stop believing....BELIEVE, PRAY, BEG...please.