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We flew out of Rochester with a storm on our tails, but thanks to Brad Pugh (Randy and Gail’s son) he flew us safely into Zeeland last night.  We were greeted by our family and friends – including Randy and Gail at the airport.  It was awesome.  There were balloons, flowers and best of all, our kids.  The Pugh’s were so kind to take Brooklyn, Avery and my dad for a  plane ride too.  Brooklyn LOVED it. 

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What blows my mind is that I had this big procedure yesterday, flew home the same day and can recuperate at home.  I am so glad to be home.  Speaking of the procedure, overall it went well.  The worst part was having the head frame applied.  The local anesthetic they used felt like a million bee stings.  It was really painful.  Then a few minutes later the neurosurgeons turn the screws into my skull to secure the frame  It seemed barbaric.  Within moments I couldn’t feel any pain in my head, just pressure and the frame. 

I then went for an MRI.  The doctors met to discuss my treatment.  Then I had the procedure.  I laid on a table for 1 hour 40 minutes while five tumors were radiated.  I slept for most of the procedure – thanks to the “I don’t care” medicine.  When it was done, they removed the frame, applied a bandage around my head and sent me to my recovery room where I could meet Dusty again.  After an 1 1/2 hours we left the hospital and went back to the hotel. 

I clarified with Dr. Parney (neurosurgeon) that the five tumors they found on the MRI were the existing tumors and not new ones.  That was a big relief to me.

My next steps are an MRI in a couple months to see how the Gamma Knife worked.  I’m also going to begin working with the University of Michigan and am working on getting an appointment with them. 

Today I feel very tired.  My head hurts and my eyes are swollen.  Small price to pay. 

Thank you for your prayers.  For those who held us up in prayer whether you were at church, home, work or wherever.  God is good and has done great things for me.  I saw Him many times while we were at Mayo.  I love it when He shows up. 

Saturday is the Susan G. Komen Race for the Cure.  I can’t wait to see everyone there. 

Good news and news

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I’m typing on dusty’s blackberry so this will be short and sweet.

Good news: 4 of the 6 tumors are no longer visible. Praise God for good news.

Two tumors remain. 1 very small and may go away as the radiation continues to work. Time will tell. Overall the neurosurgeons were impressed with my response to radiation. The second tumor is bleeding slightly. They suggest having Gamma Knife Surgery on the tumor. Details to come.

No More Radiation

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I am done with radiation!  Yesterday was my last day and it felt so good to be done.  No more crazy mask.  No more burn on my head.  No more sore ears.  We won’t know for two months whether the radiation reduced the tumors or not.  Even though I’m done, it continues to work.  That makes me feel good, but the bummer is the side effects are still in place for that time.  So I’ll deal with the fatigue, but I’ve done that before. 

I’ve noticed my memory isn’t what it used to be.  I tend to get confused with days and dates, but hopefully that will improve. 

I have an appointment with Mayo Clinic on September 8.  Thank you to Randy and Gail Pugh for offering to fly us there and back.  I’ve spoken with Gail on the phone and through email and they are like angels sent from above.  I look forward to meeting them.  

I also have an appointment with Duke University on September 13. 

Once I’ve met with both places and have their suggestions I plan on meeting with Dr. VanderWoude (oncologist) to help decide what I should do.  

The kids are doing great.  Poor Max is so confused by my head.  Whenever he sees me without something on my head, he says “mama”  “hair” in a questioning voice and has to touch my head.  Then he’ll walk to a picture of Dusty and I, where I have hair, and say “mama” in a more definitive tone.  My hair should start regrowth in about two weeks.  I figure in about four to six months my hair will be the way it was before it fell out…again. 

Speaking of hair, Samantha’s hair is getting so thick and it’s growing!  For some reason our girls don’t like to grow hair until about they’re about two. 

Brooklyn is doing great and continues to have an amazing social calendar.  She is having a blast. 

There it goes again…

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Where to begin.  Monday night was a memorable night shopping with Brooklyn and my mom.  We had a great time.  Thanks again to Lilly’s limo and the Meyaard family who provided this trip for us. 

God pulled through for me on Monday.  As you know, Brooklyn wasn’t ready for my hair to fall out so I had one simple request – please let my hair last through our shopping trip.  I put a helmet of hairspray on- it could’ve been bullet proof.  By the time the kids were in bed, however, I was pulling clumps of it out.  It came out quickly.  I’m officially bald….again. 

Disclaimer:  If you drop by my house unannounced (which is fine), but you see me, rush, dash, or army crawl in an effort to be avoided, it’s because I’m frantically looking for a headscarf to put on my head.  I will not answer the door without one.  It’s the vanity in me.  So please pretend you don’t see me flailing around throwing things on my head. 

Medical Update. 

Here is a call I received today:

Ring Ring

“hello?”

“Dr. Frieling” (monotone)

“excuse me?”

“Dr. Frieling Duke University” (he was speaking fast and monotone so I think that was his name)

Papers shuffle “I’m calling for Melinda Ver Beek (that’s me).”

“That’s me”.

“Yes, I’ve looked at your case and we can’t help you.  We only work on primary brain tumors, not tumors that have metastized.  Sorry.”

“So you’re telling me Duke is out of the running?”

“No, my department is out of the running.  Call Amy Blackwell – here’s her number”.

Peach of a man.  I mean really.  I bet he’s a great brain surgeon. 

I called Dr. Blackwell’s office and was more encouraged speaking with her staff than the brain surgeon.  According to her staff, her research is in breast cancer that has metastized.  If my case meets her requirments, I will be considered top priority and she will overboard her clinics.   Right now, I’m transferring my medical records to Duke to find out when I can be seen.  I have a tentative appointment on September 13, but she may want to see me before then. 

I’ve also been in contact with Mayo Clinic.  Currently a case worker is looking over my file and I expect to hear from them by the end of this week. 

Lots of things going on and much more to be thankful for:

Thank God for medicine.

Thank God for the amount of money that’s been donated to us.  This will be used wisely and toward all medical expenses.

Thank you for the prayers of His people.  I feel an intense peace that has also filled our home.  Our attitudes are different towards eachother and there is a lot of happiness despite the circumstances. 

Please pray that this weekend goes well for me and my family.  I’m a little nervous about how I’ll feel physically.  My expectations are so high that I don’t want to let myself down.  Please pray that I don’t have headaches, nausea, or any complications.  I am excited to spend time alone with Dusty and then with the rest of the family.  I can’t wait to see Max and Samantha splash on the beach and put sand in eachother’s hair.  For Brooklyn to take her first sea doo ride and to cruise around on a Pontoon boat.  God is always good. 

BIG THANKS TO:

My radiation drivers.  It’s a treat to chat with someone each day. 

Awesome Ironers.  This has taken a big load off our shoulders

Lawn Mowers.  Thank you Nykamp’s for mowing our yard.

Random Acts of Kindness people:  Cookies, Captain Sundae Coupons, Bars, Meals, Crafs for Brooklyn, Fun outtings for Brooklyn, scarf donations.  The list goes on and I’m sorry if I forgot to mention you.

For The Love Of Lindy – Thank you to the organizers of the various events.  I know this doesn’t come easy and much time and effort has put into it.   It hasn’t gone unnoticed.  I appreciate and love you all. 

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.  🙂

Now…

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!

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!

One year…

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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

Not good…

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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!

It’s back

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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.

Happy Birthday Dusty!

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Today is Dusty’s 35th birthday!  HAPPY BIRTHDAY DUSTY! 

This last round of chemo was a tough one.  Starting last Friday I started feeling like I was beat up or in a bad car accident.  Everything hurts; even my teeth.  Today is a little better.  Other than that I’m fine. 

Dusty and I met with Dr. Gootjes this week.  She has been talking to Dr. Hoberman and Dr. VanderWoude about the genetic testing.  I was under the impression that since my genetic testing came back negative that we wouldn’t have to remove my ovaries.  They’re considering removing them because of my survival rate and the triple negative status of my cancer.  They ordered a CA125 blood test to check for abnormalities in my ovaries.  If it comes back that there are abnormalties then we’re removing the ovaries at the same time as my mastectomy.  Either way, I’m having a hysterectomy and a mastectomy at the same time.  I feel like I’m going to be gutted like a fish! 

This is very overwhelming.  Sometimes I feel like I can’t wrap my mind around what’s happening.  I feel like I’m living someone else’s sucky life.   Within the next month or two I’m going to finish chemo, start growing my hair back (yeah!), have a mastectomy, hysterectomy (with possible ovary removal) and begin radiation.  The recovery for the surgeries is 3-6 weeks with no lifting for 6 weeks.  I have two babies.  This is very hard for me to accept.  I can’t lift my kids for six weeks!  My mom, Jill and Kathy tell me not to worry about that because they are giving excellent care to my kids.  I agree that they are – the kids are so happy, but as a mom it’s a really difficult thought. 

I know this sounds crazy, but I can’t wait for my last round of chemo.  I just want the chemo part over with.  Jill says she’s going to bake a “last chemo” cake and we’re going to have a party in the chemo room.  Sounds fun doesn’t it? 

Brooklyn started Kindergarten this week.  It was so strange packing her a lunch and having her gone all day!  She had a great time and seems to be enjoying it.   

Max has finally given up his army crawl and is crawling “normal”.  Samantha is still cruising and crawling.  They’re doing great.  They like to go on walks and sometimes they fall asleep. 

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