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Ver Beek Blog

Our young family battling stage IV breast cancer one day at a time
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Hello from Spectrum

posted by:
Lindy

They are keeping me one more night at Spectrum downtown (Butterworth).  I’ve been having strange tingling in my right foot and my right leg feels strange.  They thought it would be best to keep me here to keep my headpain under control.  I start radiation tomorrow and will have it for about two weeks.  It will be full brain radiation.  This means I will loose my hair again, be tired, get nauseas and all the fun things that go along with radiation.   As of this morning, it’s still not clear as to whether it will be here in Grand Rapids or if I can do it in Holland. 

Dr. VanderWoude was able to speak with a doctor at Mayo Clinic yesterday.  He said they just trained two of their best guys for Spectrum so there is no need for me to get the radiation done there.  They will, however, want to see me in about six to eight weeks to see how I responded to the full brain radiation.  We may proceed differently from that point on.  So it won’t be until mid to late September that I’ll go to Mayo Clinic. 

I’m going to have a HUGE adjustment because until they know how I’ll respond to radiation they advised me not to drive.  I’m at risk of having seizures because of the location of the tumors.  So to keep me, my family and other people safe on the road I will not be driving.  However, this becomes a logistical problem for getting to and from radiation treatments, doctor’s appointments, running errands, etc. 

I will have a driving sign up list on my blog once I have my appointments figured out.  If you are willing to drive me around, please go to the list and sign up.  Thank you!

Dusty went home this afternoon to spend some time with the kids and take Brooklyn to church tonight.  I think some of the service will be a prayer time for me and my family.  I’m humbled, honored and so happy for this.  I know that prayer works and the more prayers, the better.  I think God has heard my name a lot lately.  So if you want to join your brothers and sisters in Christ at Haven they would love to have you.  It’s in Zeeland on Alice street – www.havenchurch.org.  Jill is coming here with her laptop so we plan on tuning into the service via the internet.  Thank God for technology!

My brother and Jill have started the Laps for Lindy team again for the Susan G Komen Race For The Cure.  If you want to participate by running, walking or crawling, please go to http://race.komengr.org/site/TR/Race/General?team_id=4800&pg=team&fr_id=1040 For more information about the team.  To see the general website or sign up to participate or donate is: http://race.komengr.org/site/TR?pg=entry&fr_id=1040&cvridirect=true

Also, a great friend of mine from highschool, Kara VandenBerg has started For the Love of Lindy Facebook page.  You can join it or check it out here:

http://www.facebook.com/group.php?gid=141964462500093&ref=search

Thank you for the incredible outpouring of love.  We’ve had so many people come here and pray with us.  I was even annointed with oil last night.  That was amazing.  Thank you to all of our family and friends.  You mean so much to me. God bless you. 

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So tired

posted by:
Dustin Ver Beek

Thank you for all the wonderful visits the past few days. All of the tests and meetings have caught up with me and made me very tired. Looking forward to an afternoon nap today, so we will not being seeing visitors for a few hours. God Bless.

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Muffin Cups

posted by:
Lindy

A lot has happened since I first met Heather, but I promised to tell you the story of how I met her and here it goes.

I was getting groceries at Meijer.  I went through the baby section to buy diapers and essentials.  Typically when I leave that section I go into the main aisle and continue to the pop, butter and yogurt section and weave my way to the front of the store.  This time, however, I didn’t go to the main aisle.  Instead I turned my cart around and found myself in the housewares department by all the kitchen gadgets (spatulas, measuring cups, etc).  When I realized where I was I bolted down the nearest aisle to move along with my groceries (time is of the essence).  The aisle I was cutting through was the cake decorating aisle and muffin cups caught my eye.   Plain white muffin cups.  I wasn’t planning on making cupcakes or muffins or had ever wondered where plain white muffin cups might be, but there I was staring at them nonetheless. 

I shook my head and moved on to getting groceries.  A few aisles into it I was looking for the semi sweet chocolate chips and I saw a woman bent down looking at something on the bottom shelf.  I heard a younger voice behind me say “no those aren’t the ones I was thinking of.  I know I got muffin cups somewhere here before, but I don’t remember where”.  So I turned to tell her how I just saw plain white muffin cups in the cake decorating aisle, which at this point, was right across from where we were standing.  As I turned to face her I noticed she was wearing a scarf on her head.  I don’t remember my exact words, because they just started falling out of my mouth, but I said something to the effect of “how are you doing”.  She looked at me like I was on another planet.  I said “I see you’re wearing a scarf.  I assume you have cancer?  Is it breast cancer?”  She confirmed it was and continued to stare at me like I was crazy.  She let her guard down as soon as I told her I had breast cancer and beat it last November.  We started talking, her mom started tearing up.  It turns out that we both have/had the same rare type of breast cancer – triple negative.  She had some questions and I answered them to the best of my ability.  I remember getting groceries during chemo and how it was a battle to do it so I told her I would let her get going, but that I wanted to encourage her and to let her know that she can do this and she looked good (despite how she felt).  

I walked away and as I continued getting my groceries I knew that moment could only have come from God.  There is no way I would have just started talking to someone I’ve never met with a scarf on her head.  Someone told me to reach out to her that day and I did.  I’m glad I did too, because by the power of Facebook it turns out she knows someone I know and now she and I are in a small little support group we started (I missed our first meeting because of my pesky brain tumors). I can’t wait to get to know her and the other girls in our little group a little better. 

There are no coincidences in life.  Especially with muffin cups.

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One year…

posted by:
Lindy

I can’t sleep.  I couldn’t sleep all night.  We had great groups of people visit us last night.  We had a marathon day of tests and meetings with doctors that I thought we would fall right into bed and zonk out for the rest of the night.  The last person of the night to stop in was Dr. Vander Woude (oncologist).  She was the doctor we were waiting to hear from for my prognosis.  She stepped around the questioning at first.  I said “do I have three days”?  She said “oh yes, you have three days.”  Then I said “is it months or a year?”  she said “probably a year”.  There it is.  There it was.  It was put out there.  Like a sucker punch in the gut that knocks all the wind out of you.  I have about a year to live.  I never thought I would say those words.  The radiation and any other procedures they do are to buy time.   

Just as we were going to bed, Dr. Hoberman called our room phone.  She spoke with Dr. Song (reconstructive plastic surgeon in Chicago) who happened to be on vacation, but was very happy to talk to her about me.  Dr. Hoberman is going to place some calls today to see what she can find out about alternative treatment at a bigger hospital or the Mayo Clinic.  Dr. VanderWoude is coming back in today (I’ts her weekend to work) and we are going to talk more about getting me to Mayo Clinic on Monday.  Does anyone have a private pilot’s license and feel like taking a trip to Mayo?  😉

Dusty and I are devastated.  We are beside ourselves upset with this news and don’t know how to process it.  I believe in the prayers that are being said.  We feel a peace at times that we know only could come from God. 

Please pray that we are led in the right direction for treatment.

Please pray that as Dusty and I look to the year ahead we will have two different outcomes so pray for him as he is the one left behind to be with our kids.  To raise them. Love them. Clothes them. Feed them.  Be a mom to them.

It breaks our hearts.

We need your help so if you know of alternative places such as mayo or chicago that do extensive/miraculous work with multiple brain tumors we would appreciate the information.

God Bless

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Not good…

posted by:
Lindy

We are settled into our room at Spectrum (Butterworth) Hospital.  I had a CT scan of my abdomin and pelvis last night around 10 p.m.  I don’t have the results of that.  They did a brain MRI at 12:30 a.m. and we got the results of those today.  It turns out I have six tumors.  Three are quite large and are the ones causing the headpain and nausea.  Two are “normal” size and one is very small.  The PA from the neurosurgeon’s office said since I had so many of them that surgery isn’t an option in their opinion.  She said they would just grow somewhere else in the brain or grow in the same spot. 

The PA from Dr. VanderWoude’s office came about an hour ago and said it’s Stage IV cancer and the prognosis isn’t good. 

We still have to meet with the Radiation Oncology Team. 

My bone scan is scheduled at 3 p.m. 

I’m terrified.  I cannot bear the thought of leaving my kids without a mom.  I know I shouldn’t go there yet because we don’t know the exact prognosis, but that’s where my mind goes.  They’re too little.  I have to raise them.  I’m their mom.  I want to be there for them.  This is a horrible thing to have to process.

Please pray for:

Results of my bone scan to be cancer free.

Peace and God’s prescence, love and comfort in our lives.  I want to hear his voice.

Our kids.  Brooklyn is only six, Max and Samantha are 1 1/2 years old.  Even if the prognosis were good, this still isn’t fair to them to have their mom away from them. 

Our parents.  They are our rock for our family.  Please pray for strength, peace, endurance and energy to keep up with our kids (my parents are taking care of them right now).

My friends.  I have great friends and Jill has been with me every step of the way.  She’s even here right now. 

Pray that we will not grow weary.  I HAVE to beat this.  It’s not a choice.  God is the great physician and can work miracles. PRAY FOR A MIRACLE!

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It’s back

posted by:
Lindy

The headache and nausea didn’t go away so I called Dr. Hoberman’s office this morning. She consulted with Dr. VanderWoude and together they decided to send me to Holland Hospital. After they did a head CT, they found two brain tumors. At least now we know what’s causing the headaches. They admitted me to Spectrum and that is where I’m sitting now. I have a night full of tests ahead of me-MRI, CAT scan and bone scan.

Please pray we caught the tumors early and that the cancer hasn’t spread. Pray for Dusty, the kids and my parents. Pray that I can beat this cancer too.

We will update again after the tests are done and we meet with the neurosurgeon.

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Impatiently waiting

posted by:
Lindy

Do you ever have anything that consumes your thoughts?  Something you can’t shake from your mind?  I wish I had something profound, deep, spiritual or thought provoking that consumes my thoughts, but I’m sorry to say it’s my upcoming surgery.  It’s always on my mind.  I’m anxious.  Nervous.  Excited.  I can say one thing – I’ll be happy when my boobs are attached to my body again.  Do you know how many times I’ve left the house and realized I forgot my boobs?  That is something I never thought I would have to think about. 

I try to think of every possible scenario and find a solution to it.  What if Dr. Song finds he can’t do the DIEP procedure because of my crash c-section?  How long will the surgery take?  What’s recovery going to be like?  Since I can’t lift for six weeks, what about my kids?  Will I be able to walk Brooklyn to her first day of school?  Will I be able to do laundry?  Will I be able to get groceries?  If I can’t stand straight up, how will I sleep?  How will I take a shower? 

Here are my solutions:  Dr. Song won’t know until he opens me up whether I have damage from the crash c-section.  There is a 90% chance that he will be able to do the procedure despite my medical history.  The surgery takes roughly eight hours.  I’ll spend about three days in the ICU.  Recovery is about six weeks.  I won’t be able to stand up straight or lay flat for two weeks.  I can’t lift for six.  I have childcare lined up for Max and Samantha – thank you mom, Jill and Kathy!  I am making freezer meals so my family can eat.  Since I missed Brooklyn’s first day of kindergarten last year, I will be there on her first day of school this year even if I have to crawl.  The laundry and groceries will get done and I’ll sleep in a recliner.  I still can’t stop my need for controlling things!

Information on Dr. Song

Information on the DIEP procedure

I am going to Chicago on Monday to meet with Dr. Song for my pre-op appointment and to meet with Anesthesia Department.  I’m making the most of it by taking Brooklyn, Jill and Avery along.  We’re going to the Shedd Aquarium when I’m done.  Fun!

I would like to think that cancer doesn’t exist now that I’ve beat it.  It’s still out there and still attacking young women/moms!  I’ve met a new friend at the end of my cancer last year who was just diagnosed at the time (hi Amy!).  I’ve been in contact with Lynette Bell who I know many of you are friends with or have heard of.  I met another young mom in Meijer a few weeks ago (hi Heather) who is going through the same treatment as I went through last summer.  How I met Heather is amazing and only something God could do.  Since this post is quite long I will blog about that meeting another time.  So now I follow their blogs and pray for them the same way people prayed for me.

Pucker up!

Pucker Up!Snacktime Maxblog-61310-samantha-with-juice-box.jpgblog-63010-3.jpg blog-61310-isnt-he-cute.jpgblog-samantha-61610.jpg


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See You Later Mom

posted by:
Dustin Ver Beek

I said “see you later” to my Mom this week on Father’s Day.  She passed away after a ravaging battle with Parkinson’s disease.  She was only 69.   

About a month ago, we were given word that she had only a few more days to live.  My Dad could no longer care for her, so we moved my Mom into the Holland Hospice House; her final earthly home.  There was walked with her during her final days (which turned out to be several weeks).  We talked, we laughed, we showered kisses and we cried.  I whispered sweet things into ears and held her frail hands.  Each day was overwhelmingly difficult, yet it same vane was a gift as we were able to say goodbye over and over again. 

Right after she drew her last breath Sunday night, a vertical rainbow appeared over the Hospice House.  As I drove over there to be with my Dad and family, I saw this rainbow for only a few seconds.  I was exhausted and dismissed this as an anomaly since it was not raining.  When I arrived, I heard that my siblings also saw this rainbow.  The staff tending to my Mom also witnessed it – a short vertical rainbow as my Mom rose to the arms of Jesus.   

 

Some may call the vertical rainbow a coincidence.  Others, like me, believe that it was a sign of God’s promise to His believers; a sign that He fulfills his promise for all eternity.

 

That’s why I can faithfully say “see you later” Mom.  I know that one day I’ll be in her loving arms once again. 

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The Good. The Bad. The Ugly.

posted by:
Dustin Ver Beek

The Good

Things have been going well with my health lately.  My energy is back to normal and I feel like a regular mom with three little kids.  My range of motion on my right side has improved and with continued physical therapy I hope it gets back to the way it was.  I am anxiously anticipating surgery on August 24 at the University of Chicago.  Foobs here I come!

Another good thing is that Samantha was seen by Early On last week Thursday and they are done following her!  Diane from Early On has been following her since she was born to make sure she meets/exceeds her milestones and to watch for signs from her birth trauma – developmental delays, cerebral palsy, etc.  She has been on point this entire time and continues to be our little miracle. 

Brooklyn just completed Kindergarten and is looking forward to summer despite missing all her kindergarten friends. 

The Bad

Dusty’s mom has been at Hospice House for over a week now.  She is dying.  It’s an awful process to watch someone go through.  She is so weak and weighs only 70 pounds.  Please pray for her, Dale (Dusty’s dad) and the family.  Pray that she’ll have peace and be comfortable. 

The Ugly

Ugly…I don’t know what’s ugly, but I felt like it goes with the good and the bad so I had to include it.  If I had to pick something ugly I would say my hair.  It confuses me.  It challenges me.  It makes me laugh.  I don’t know what to do with it.  It’s super curly and thick.  It’s high maintenance.  I haven’t had a hair cut in over a year and I can start to see the beginning signs of a mullet forming so I think a little trim in the back might help (I’m coming Jenny!). 

It was a year ago on June 3 that I had my first chemo treatment.  I don’t ever want to experience a summer like the summer of 2009 again.  I’ll never be the same because of it – physically, emotionally and mentally.  As I like to say – it is what it is.  I’m glad it’s over and I’m looking forward to this summer. 

I’ll see you around…


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Getting Away, May 2010

posted by:
Dustin Ver Beek

We took a short vacation up to the Michigan Upper Peninsula two weeks ago.  It was the first time we were actually able to get away in two years.  Brooklyn went with us, so it was nice to have some one-on-one time with her.  She’s gone through a lot the last few years.  She’s becoming such a little lady. 

We are anticipating the first reconstructive surgery at the University of Chicago Hospital, scheduled for the end of August.  This Memorial Day weekend marks the one year anniversary of the cancer diagnosis-it’s hard to believe it’s only been a year.  In many ways it feels like it’s been five.

Upper Peninsula, Michigan

Tahquamenon Falls State Park

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Making a Wish in St. Ignace (Straits State Park)

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Mackinac Island

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Hanging out at the Cabin

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Taking a walk with Dad


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