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Our young family battling stage IV breast cancer one day at a time
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Archive for August, 2010

Happy Monday

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Today was my sixth full brain radiation treatment (FBRT) and I’m feeling the effects.  I’m tired, a little foggy, nauseous and have a terrible taste in my mouth.  I have about 11 more treatments to go.  When I’m finished with my 11th treatments, it will be another two months before they know exactly how the tumors responded to the radiation.  The daily radiation I receive doesn’t mean it’s immediately killing the bad cells.  It takes time to show the response.  It’s such a scary thing. 

Last night was hard for me because I realized I could lose brain function from the radiation.  I know I’m not a genius, but I would like to think I’m fairly intelligent and the thought is scary.  I’m also not ready to lose my hair again.  Dr. Edlund said it will come out by the end of my second treatment week (the end of this week).  I thought the days of headscarves, wigs and hats were behind me.  Never say never, right?  Brooklyn prays every night that “mommy doesn’t loose her beautiful hair”.  I just tell her I’m the same person with a whole new look.  I think that’s the toughest part for her.  What six-year-old wants to see their mom without hair….again?! 

Everything is taken care of at home.  Max and Samantha are based out of my parent’s house during the week while Dusty’s working.  Brooklyn stays home with me if she doesn’t have anything on her social calendar for the day. 

Last Saturday I had to talk to Brooklyn about dialing 911.  Since I have six tumors I have a risk for a seizure.  It’s possible that she’ll be home alone with me if I happen to have one.  So I explained that if I start to shake and don’t respond to her that she needs to pick up with the phone and dial 911.  She had typical 6-year-old questions:

1.  Who is going to answer?  Will it be Anna and Riley’s daddy because he’s a police officer, you said?

2.  What do you I need to say?

3.  What if I can’t remember my address?

4.  What will they do to me?

5.  Will I go to jail? 

6.  What are they going to do to you?

Poor kid.  It seems like too much for her to have to know right now.  She’s a great kid, though and the odds are that she will not have to dial 911.  I just want her prepared. 

Thank you to everyone who signed up for the group For the Love of Lindy on Facebook.!/group.php?gid=141964462500093&ref=ts

Thank you to everyone who is signed up to participate in the Susan G Komen Race For The Cure on the Laps for Lindy team (see top right)

Please pray for:

My brain function to be protected from the effects of the radiation.

Radiation miraculously takes away all tumors. 

Dusty has been an amazing care taker for me and the kids.  The phone rang at 10:00 a.m. and when I said “hello?”  All I heard was (in a low voice) “take your pill”.  Too funny.  I totally would’ve forgot.  So thanks for those little reminders honey!  Please pray that he doesn’t grow tired of trying to “do it all”. 

Our kids.  They mean the world to us and I want to stay alive and raise them.  Please pray that the little ones will have little or no memory of this and Brooklyn will be able to roll with it.

THANK GOD for all the awesome people he has in our lives.  People who are fundraising for our family, supporting,  praying, visiting, messaging, sending cards, everything.  It means more than you know. 

Thank you Christy Pacanowski for taking our family pictures before my hair fell out again.  You go girl! 

Save the Souls!

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Let’s be indulgent for a minute.  Let’s play the what-if game.  Let’s put on our creative hats and go down a lane that’s fun until you’re faced it. 

You have been told by an oncologist you have maybe a year to live.  Imagine what you want to do with your life. 

I will take you down my mind’s road as I’ve pondered this for over a week. 

My first thought was to dust off my video camera and start making tapes for my kids (I will probably still do this, I just don’t know where to begin).  What do you say?  How do you convey the most important things you want them to know?  How can you be sure they will be on the right track throughout their lives if you’re not here? 

Another suggestion was to write a small children’s book, just for our kids, to help them understand what mommy is going through. (Thanks to Snapfish, I’ve already started).

Then I started to categorize by the decades in my life.

In my 20’s:

Brooklyn wasn’t born until I was in my late 20’s so I’m sure my thoughts would have been self indulgent and silly.  Like apply for all the credit cards I can, max them out, quit my job, cash in the little money I saved into my 401K, take Dusty and travel the country coast-to-coast or maybe even the world.  Stay in the best hotels.  See all the things I’ve ever wanted to see.  Eat whatever I’ve wanted to eat.  Experience all the things I could experience.  Sky Dive.  Scuba.  Bungee.  Gamble a little.  Get a tattoo.  Buy all the clothes I could’ve ever wanted.  Oh and always come home for the holidays and eat one or two servings of each dessert or maybe the whole pan if it’s my grandma’s oreo ice cream dessert (I have a BIG sweet tooth).

In my 30’s

Brooklyn was born in 2003 so we had a beautiful little girl in our 30’s.  We were running a baby furniture store and things were more serious at this time compared to my 20’s.  Life wasn’t as carefree.  Dusty and I were working really hard at the store and most of it wasn’t fun.  Unfortunately, it was a difficult business to deal with and the economy was slowly tanking.  We loved Brooklyn so much that we knew wanted to have more children.  So by the miracle of invitro fertilization we found out in 2008 we were expecting twins.  The news was quickly overshadowed by severe sickness.  We took our eye off the store and thankfully had great employees to help run it, but it’s not the same when you’re not in it (mentally or physically).   The store began to drag and so did our attitudes.  Had I been given the “years notice” at that time I would’ve immediately thrown in the towel, locked the doors, said “come get us! (fist shaking in the air)” and lived my life with our blossoming family.  But being the hardworking dutch people we are, we couldn’t throw in the towel.  We had to close the best way we could.  In May 2009 we closed the store.  I still would’ve eaten the entire pan of my grandma’s oreo ice cream dessert, but I didn’t know I had a year left.  🙂


I’m still in my 30’s.  Thirty three to be exact.  It was the end of May 2009 I was told I had breast cancer.  The twins were 7 months old and Brooklyn was five.  We had a young family with lots of help and we got through it.  My cancer was invasive and aggressive.  I went through chemo, double mastectomy, radiation and was looking forward to reconstruction when I was told the cancer metastasized to my brain in the form of six tumors and I have about a year to live.  Now put that in your pipe and smoke it. 

Last Friday, Dusty and I were given that news.  We had conversations I didn’t think we would ever have to have.  Talks about the kids and what’s most important to us for them.  Before this diagnosis we were “getting bored” with our house and started to look for new houses/property to buy.  I was looking forward to reconstruction and at least looking “normal” with clothes on.  Suddenly…nothing mattered.  Nothing mattered.  Not ONE thing.  WHO CARES WHAT OUR HOUSE LOOKS LIKE?  Who cares if I don’t have the ideal bathroom situation for two little girls. 

My only concern is to stay alive.  I have to live.  I am going to raise my children.  I am going to be the best mom I can be for them.  I will be there for them through all the bumps, scrapes, broken hearts, troubles and needs.  I am going to make a difference in this world.  I am going to be the best wife my husband could ask for and the best daughter, sister and friend. 

So given a year doesn’t mean I’m going to dip my toes in each coast of the country or eat an entire pan of my grandma’s oreo ice cream dessert.  I’ll have plenty of time to do that. 

I’m going to do what God would want me to do.  He wants me to live and save souls for Christ! 

Go save some souls!


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My life has been hijacked.  A week ago Monday I was hanging out in Chicago meeting with my plastic reconstruction surgeon and finalizing the last steps before being rebuilt.  Then we went on to Shedd Aquarium and had a blast with the kids. 

Next thing I know, I’ve been derailed on an out of control track.  I went to Holland’s ER room for what I thought was a silly headache.  Got a CT scan, was told I have two tumors, was drugged and transferred by Ambulance to Spectrum where I was told the two tumors are actuallly six and I have maybe a year to live.  How did my life go from slowly going back on course to a “new normal” with a body that at least looked “normal” (boobs) to a complete turnaround where death is knocking at my door?!  This isn’t supposed to happen to people right?  Not at 33.  Not when they have three little kids who need a mom. 

My friend Holly sent me some very powerful words lately  I’m so thankful I got them.  I hope she doesn’t mind me sharing them with you:

Just some thoughts for you and some scripture:—  I want to encourage you in your thoughts and words because the bible says that ‘Death and life are in the power of the tongue; and they that love it shall eat the fruit thereof.’ Proverbs 18:21I always feel that this means it is very important the way we speak…..if God says in his word that death and life are in the power of the tongue then I choose to speak words of life.  I choose to speak life into this situation where doctors are speaking death.  I claim (by Christ’s healing power) that you WILL live, you WILL see your kids grow old, you WILL be healed.  What do we have to lose by speaking life into this situation?  Our tongues are powerful….speak life with it. 

Thank you Holly.  I will begin speaking life today.  All of you need to speak life with me today too.Thank you to Gregg and Monica for taking Brooklyn to the beach yesterday.  She had a great time and slept like a baby when she got home. 



No place like home

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There is no place like home. 

The last week has been incredible.  I can’t believe I’m walking around with brain tumors.  It’s a very scary thought.  I keep wondering when or if I’m going to have a seizure.  What will it be like?  Will I be alone when I have it?  Will Brooklyn see it and will it will scare her?  What do I do if I have one? 

It was so good to see my kids today.  My parents kept the babies for one more night – I am exhausted – and Brooklyn is home with us.  We had a good time tonight.  She wanted to celebrate August so we did arts and crafts to celebrate August.  Why not, right?

Dusty and I voted today (go Bill!) and yes, I got a sticker.  I’m wearing it proudly. 

My main side effect from radiation is EXTREME EXHAUSTION.  I’m not nearly as sick as I was with chemo (PRAISE GOD!).  I just sleep or want to sleep a lot.  I also have a lot of jaw pain and swelling.  My lymph nodes under my ear lobes are swollen, hard and sore.  It’s very uncomfortable.  Thankfully I see Dr. Edlund (radiation oncologist) tomorrow so he can tell me if that’s a normal side effect. 

I don’t have my permanent schedule for radiation so that’s why I haven’t posted a driving schedule.  Hopefully I will know more tomorrow.  Thank you to everyone who has offered to drive me. 

Please pray for:

  • The tumors to miraculously disappear. 
  • Continued smooth transition into home (away from the comfort of being at the hospital).
  • A positive reaction to the radiation.
  • Few side effects from the radiation (or at least that they don’t get worse – I can deal with this). 
  • Dusty and the kids.  My heart aches for Dusty as he, once again, has to go back into cancer mode less than a year later.  He’s doing awesome and is great with the kids, but this is not what we expected. 
  • Our parents.  Please pray for strength, support and encouragement for them.  
  • Max and Samantha are still too young to get what’s going on.  They were having so much fun with my parents today which was a huge relief to see.  Running around and laughing.  The best sounds on earth. 


One simple goal listed on the whiteboard in my hosptal room – “Stay Alive”

I’m still here

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I feel like Spectrum Health is becoming my second home.  My first radiation treatment went well tonight.  They mold a mask specifically for my headshape and then zap me.  The mask will always be my mask.  When I’m done I get to keep it.  If I had a mantle, I would put it on there. 

The reason they’re aren’t sending me home today is because 1.  My radiation treatment was so late in the day and they need to make sure I react well to it (so far, so good) and 2.  They need to make sure my headaches can remain under control at home.  I’m getting mixed signals from the nurses on this.  Some imply that it should go well and other’s seem to question it.  I’ve been assured, however, that I’m going home tomorrow. 

I called my parents to give them an update and see how the kids were doing.  The kids are doing great.  My dad has taken some days off to help my mom with them and Max is following Grandpa around like a proud little cub.  Samantha and Brooklyn are having fun with grandma.  When I talked to Brooklyn tonight she cried.  She said she was afraid we were never coming home.  That was hard to hear.  She’s such a tender soul. 

I have eighteen rounds of radiation to go.  Most of them will be done in Holland, but I do not have a specific time set up for those yet (therefore, no sign up sheet has been created yet). 

Thank you for your advice and tips on where to go for treatment.  I have a nice list going, but after talking with Dr. VanderWoude today, I feel she has my best interests in mind and wants me to go to where I’ll get the best help.  Right now that seems to be Mayo Clinic.  I have the forms filled out for Wings of Mercy and will proceed further with those tomorrow when I go home. 

Thank you for the prayers, kind words and deeds you’ve done for my family.  Please remember that Brooklyn doesn’t know about the time frame that has been given to me, and at this point, we don’t feel it’s necessary to tell her about that.  We would appreciate you use discretion around that too. 

I’ll be in touch tomorrow.  Everyone take care.  Don’t forget to sign up for Laps for Lindy if you want to participate.  Click on “Race For A Cure” on the right hand side of the page. 

God bless you!

Thank you

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Thank you to everyone who came to the worship service last night at Haven CRC.  My two Jill’s (friends) came to the hospital with laptop in hand (and chex mix of course) and we watched it on that.  I am grateful to have so many people lifting me and my family in prayers right now.  We need them.  Please do not stop.  I beg that God will erase these tumors so that I can live a long and full life with my family.  Thank you to everyone who has sent letters, cards, email, prayed for us.  Words cannot say enough.

I’m still at Spectrum as an inpatient and I have my first radiation treatment today at 4:15.  I don’t know when I’m going home, but I hope it’s tonight. 

Annointing with Oil

Our Pastor and a group of Elders came Saturday evening (7/31/10) to pray with us and also annoint me with oil.  This was so special and a very emotional moment. 

Hello from Spectrum

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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 –  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 For more information about the team.  To see the general website or sign up to participate or donate is:

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:

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. 

So tired

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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.

Muffin Cups

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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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