Thursday, July 16, 2015

Open Note to all our Cancer Slayers...Thank you

You hear your child's first cry, you feel the greatest sense of relief and then love ... the one you will never be able to explain...comes over you.  I remember it, I had the blessing of hearing and feeling it 4 times, "Irish Quads" of sorts (being born 4 in 5 years) I remember saying many times, in the last 12 years. to myself that I am so thankful that I have healthy children. 

I didn't dream that we would ever be touched by Pediatric Cancer... Sydney who is 12 has Cell B Burkett's Lymphoma...and what I didn't know is when the "C"Word comes into your life there are so many feelings.  Some very obvious... and others so completely unexpected that you don't even realize what is happening when they are happening.  

Any of you that know me can guess the first feeling I had...anyone?   "I have to be Brave!"  I have to be brave for Sydney, for Ray, for Logan, Mirada and Dillon...I have to be oh so Brave.  The next, yep you guessed it, Strong...I have to be the pillar, the island in the storm, the Teddy Bear Blankie that makes it all ok.  I tried to do all of that but there were days... Days that I screamed WHY? Why her and not me?
I had a very hard time asking for help, I felt it was a sign of weakness,  and a dear friend reminded me, I needed help, and that so many wanted to do something... anything, because they were feeling the same way we were.  I couldn't believe the outpouring of love and support.
Helplessness, that one was a doozy, I would sit and listen to Doctors and Nurses talk, I would watch them hang bags and bags of fluids on her pole as that "medicine" was going into her veins, I held the blue throw up bag and still carry one every where I go, I watched her come out of surgery and press that morphine button so many times, each time breaking my heart a little more.  But her little smile was always there...ALWAYS
Thankfullness I call it the grasp for the outstretched hand.  I had a sea of hands to grab and I will never, ever be able to thank each and every person who helped.  I do have a renewed faith in humanity though.  I still can't get over that every single moment that I spent my baby girls side was donated leave from my amazing friends at work, Thank you just doesn't seem like enough. 
My family was always there with prayers and thoughts and finances and love... Thank you from the bottom of my heart, I didn't even need to ask everyone just pitched in.  Now on to my friends, those that I went to High School with, Those I have known since I was 3 or 4... Those I have known for mere months... WOW I am humbled, sometimes humbled to tears...crazy uncontrollable tears.
Teacher One of the most important thing I wanted her to learn is that, this is HER body, HER Cancer and HER treatment.  She became her own advocate and knows exactly how to tell any Doctor or Nurse what she has and how she wants to be treated.  You can't imagine how that empowered her!
Fear took over, and I just took that fear and spent every single moment with Sydney, doing treatments, Chemo (pronounced CH-emo in our house) Clinic Visits, fundraising, loving and exploring.  It is all I knew.  Because when fear was there the day began with me reaching over to make sure that my baby was still breathing, and then embracing that day doing whatever she wanted, eating whatever she wanted even exploring our new home base if she felt up to it. 
 Guilt Now this one is the worst, I didn't give my other kids or my husband the attention, information, phone calls, texts or even really existed for them.  I have insane guilt.  I felt that I had to focus all of my energy, as well as, keep Sydney's Energy in the right place to even keep going.  I will never ever be able to make that time up with them.  I missed Dillon's 16th Birthday, man that sucked! Poor Dillon he always seems to get the worst of it, I WAS able to get to town for Mirada's Graduation and Birthday but during that time I felt riddled with guilt that I had just missed Dillon's 30 days before.  Ray would call craving information about how Syd was doing and many times I had to just disengage because either a Doctor or Nurse was coming in or I just didn't know what to say or how to say it.  Do I speculate, do I wait for tests, sometimes I would just fall apart on the other end of the phone and why the hell did I do that to him?  Poor guy completely helpless 12 hours away listening to crying on the other end of a phone.  Good God! Thank goodness he understands me...don't get me wrong there were some days that we both just wanted to jump thru the phone at each other unable to understand what was going on at each others end of the phone.
Pain The physical pain I felt is indescribable and once again wanted to take her place so many times.
There were a few times I just wanted to grab her out of that bed and run... run home, run anywhere, anywhere but there.  Of course she has no idea that this was all going on... We just kept everything positive and really for the first time in her life enjoyed being an only child for those 110 days
Pride I am so proud of the girl she is, brave, The bravest of the brave... Slayer of Cancer Cells and the girl who says "I got this" and "Its only Cancer" can only make a Mothers heart sing with pride. 
She never shed a tear when she had her head shaved and we even skyped with Mirada so she could be a part of it.  Braveheart and Slayer of Slayers.
Love It takes a lot of love and a lot of people to make an experience like this come out positive.  She is an Ambassador for Childrens Cancer Research Fund, She is and always will be a advocate for "Love your Melon" who make sure all kids with cancer have hats to keep their heads warm and make them all feel like Superheros.  Sydney is now part of the North Dakota Make a Wish Chapter and has made it very clear what she wishes for... Stay tuned for that...Its exciting and lifechanging.  She was interviewed for the Minneapolis CBS News Morning Show about how she remaed positive during her journey that is still not over yet... but we are on smoother seas. 
There are many trips back and forth to Minneapolis for Syd, Ray and I for tests, scans and clinic visits... and one day we will be able to utter the words, cured and cancer free... but until then keep the positive vibes coming.  Kepp her in your thoughts and p[prayers and always keep the Slaying Spirit.
Give you wife or husband a huge hug or kiss today and tell them how much you love them.  LEt you kids know that they are your most precious gift in the entire world.  Because I know my precious gifts are Ray and the kids.... My amazing trophies that I am so proud to have and cherish them every single day! 

Saturday, May 2, 2015

...You can't imagine, I hope you never ever have to!

No, you can't imagine...In about every single message that I receive from loved ones, acquaintances, family... the sentiment is the same; they can't imagine what we are going through...

I certainly hope not...

I do not ever want anyone else, to ever have to look Childhood Cancer in the face, much less have to imagine what it is like.  Our lives changed immediately when I heard the words that my 12 year old baby girl, Sydney, has Non-Hodgkin's Cell B Burkett's Lymphoma.  She is one who looks at the world though different eyes.  She loves deeply and strives to make the world a better place
Sydney with her best friend Kayla going to the Middle School Dance
Unfortunately I CAN imagine many things...  things I have been through in my 45 years on this Planet.  The loss of, not just one parent to Cancer, but 2.  My Dad lost his battle with Lung Cancer 24 hours before my first child(Logan)was born.  My Mom fought a good fight against Colon Cancer and lost (Sydney was 9 months old).  My oldest brother,Danny, passed away in 1991 from AIDS, and my brother David struggled for a very long time with addiction, and after many rehabs and programs lost that fight.  I figured I had been given the lions share of fights and loss, disease and caretaking, helpless feelings and moments in time when life stands still.  But no...  

Syd had been complaining about a pain in her tummy, I thought it was probably a pulled muscle or something but she was consistently hurting so I made her a Dr. appt and went in on March 19th at 10am, after a quick exam the Dr. (not our regular Dr, since our PCP was having surgery the following day herself) decided Sydney should have an abdominal Ultrasound.  When the Ultrasound tech started measuring things on the screen I knew it wasn't good, but thought it was probably appendicitis or something simple like that.  When the test was read we, still not knowing what was wrong, were to report to the CT Scan Department at 8am March 20th (Friday) and have a scan done. 
When we didn't hear anything by 2 that afternoon we "camped" in the Dr office and waited for the results of the scan.  Our Dr who was on her way into surgery was actually reading the scans as they came in elsewhere and working in tandem with this new Dr (we have the best Primary Care Physician in Williston) We were told that we had to have an MRI Monday morning at 8am, that they see a mass in her abdomen and there wasn't more that they could tell us...That was the longest weekend in our lives. Monday morning March 23rd we went in for the MRI and went in to have it read around 3 that afternoon...Both Doctors were there, and they had said that there was a grapefruit size mass in her abdomen and it had to come out...they said it was very "complicated" I felt like I had been hit in the head with a baseball bat...and then the word was said... "It could be Cancer" It wasn't a baseball bat that hit was Thor's Hammer!  We didn't hear much except that, she needed to go to a specialized hospital...They called and we had an appt with a Surgeon in 24 hours in Minneapolis, MN...

So our adventure began: Sydney and I jumped on the train that evening, rode it through the night and went to the appointment with the surgeon at 4:20 March 24th.  She had an appointment to be in surgery the following day at 9am...all I really heard was it has to come out right away.  So off she went into surgery, right on time, I walked her to the door of the surgery room and was strong...I was oh so strong for her, I held her hand, and I told her everything was going to be ok, That the whole family loved her and I would be by her side the moment she opened her eyes.  They took her inside that freezing cold room and I crumbled, lost all sense of where I was, where I was supposed to go and wait and I don't really remember exactly what happened, someone found me and helped me to the waiting room where I stared at a clock, by myself for about 5 or 6 hours
My baby has always as a brilliant smile thru this whole thing!

The only time we are happy to  hear our children cry is that first moment that they are welcomed into this world.  When your baby is sick it is the worst sound ever when you are utterly helpless, your baby is crying (she hasn't cried in years) so hard that she cannot speak and you can see her gasp for air because she is in so much pain. I feel a pain I could never explain, I feel emotions that I wish I could shutdown.  I want to scoop my baby out of that hospital bed and run...Run as far as I can, but that isn't going to cure her of this thing! 
I try to comfort her and my words and my touch seem to hurt her just as much as the horrible pain she is in.  She had major surgery (Right Hemi colectomy).  When in your life do you think your 12 year old daughter would be hooked up to pain meds that she controls by a button.  To see her in that pain was almost more than I could take. She had to get out of bed right away and those first few days were horrendous.  Every time anyone tried to speak to her it was like the words hurt her...It was excruciating and my heart was in a million pieces
This was about 8 days after surgery; Sydney the Cancer Slayer was Born!
Don't Miss out on Getting your Cancer Slayer Tshirt
Thank God Ray came with Dillon and Mirada after the worst part...because I needed just a little break to process some of what was going on.  It was impossible to try to communicate what was going on here over the phone and they had a great visit... It really did boost her spirits. It's not just Sydney that has Cancer, it is the whole family.  Syd and I are here...Ray, Logan, Dillon and Mirada are home in Williston ND...It is difficult to be apart, Dillon had his 16th Birthday on April 24th, Logan had Prom Last weekend and Mirada has Graduation on May 26th.  Big milestones that are difficult to miss but this is where I need to be.  Thank to my unbelievable co-workers, they have donated their vacation and sick time to cover my time off for FMLA leave (12 weeks) (its a program where my work holds my job and insurance for 12 weeks if you are out with your child who is ill) My new community has embraced me and my family as one of their own and I am proud to be part of the Williston Family.  You all have no idea the feelings you have all provoked in me and I am ever SO grateful to you!
Sisters playing Legos and making faces!

On March 25th my baby girl Sydney who is only 12 years old was diagnosed with Cancer. It wasn't for about 10 days before we knew it was Lymphoma and what cell type and what the course of action was going to be.  I would not have made it through this if it wasn't for this support I have surrounding me.  Our medical team is phenomenal and University of Minnesota Masonic Children's Hospital has the most caring staff.  It takes an entire hospital to make all of this happen from the Surgeons, Oncologists, Nursing Staff, Child Family Life Specialists (Who help talk to children about what is going on with them and teaches them to be their OWN medical advocate) and the volunteers.  Children's Hospitals have so many ways to help and I am so happy that we are here.  This is the right place for her treatment!  

But it s our friends who have been the support I can lean on, I am not one who asks for help very often, I think I can do it!  That I am Superwoman and I can do it all myself or I will find a way.  I had a friend from High School send me a message and there was something he said that made me realize that I need to take that outstretched hand and grab it...and hold on for dear life!  I Thank you all, we all draw strength from you!  We have our Cancer Slayers on Facebook who are always cheering Syssy on  .We are going to be here for a while, even though we have met that "goal" we didn't realize the length of our stay, every little bit is appreciated! ...Thank you to everyone, Friends/Family from near and far who have donated to our GoFundMe Campaign and our Paypal We have gotten many cards and gifts from all over the country and every single one makes her feel very special. We feel the love and all of the help and assistance that everyone has given us is so humbling! We are loved and could never ever thank everyone for doing their are all a gift, a treasure to us and we love and Thank you for each and every thought, prayer and extra strength that Sydney is returning to those around her 10fold,  she is an amazing child with strength and fortitude that I have never ever seen.  She isn't afraid of this... She is owning it!!!! She touches peoples lives every single day! I am so blessed to have this precious angle in my life and this is oing to be cured before we leave here!


Friday, January 30, 2015

Oil prices are down; is Moral too?

Everyone I know keeps asking me, “Are you staring to see the effects of Oil Prices dropping?” It’s a valid question… 2 years ago, (Feb 3rd and coincidentally, this year, my 19th Wedding anniversary) many of my friends thought I was brave…an adventurer.  Many know Ray is a risk taker and very unselfish…His first year here was NO picnic.  Now some of them are wondering if we were crazy!   There is a cycle, if there is a boom there will be a bust! 
Well ladies and gentlemen, we are all in!  We have a home here, We are entrenched in our new community, I am on the Rural (NPSD8) School Board and committed to be a positive role model for those in transition, Ray is a plant operator at a new gas plant coming online in March and we are all still embracing our new home.  I am one of the lucky ones, I have my partner, my children and 4 of us have great jobs!  Not everyone can say that! 
I look at this upcoming holiday coming up thru different eyes,
This guy is looking for someone to spend Valentine’s Day with, I like to think he is a good guy (I have never met him nor do I know anyone who knows him) but it makes me realize how lucky I am.  There are many here who have no one to come home to, each night, not only on the Holidays...but EVRY single night.  I can’t imagine.  This Facebook page called “Williston Connections” people buy and sell cars, clothing, put up notices about things to be aware of etc.  Sometimes it can get a little catty, but all in all, entertaining to say the least.  I hope he finds someone or some people to connect with to help him thru this holiday that focuses on the land of mancamps, I think this is not one place that will be selling out of chocolates and roses!  My heart goes out to him, but even when I was young and crazy, I would not have met some stranger for Valentine’s Dinner and the movie 50 Shades... even if he said its just a platonic dinner!  I’m just saying.

Now with Oil Dropping (plummeting whatever you want to call it) some people are nervous… that makes for tension… then the domino effect.  We have not seen the oil prices effect any of our friends, no one has lost their job (If anything Ray might have been on the chopping block, in a recent article Halcon Resources, his past employer, is #7 on “The Death List”) Eeeeek, that is the closest to home it has been.  In my opinion, it could be a nice catch up time, hopefully some of the infrastructure items can be taken care of, roads be brought up to standard and some additional housing be built.  I heard, before the price drop there were over 30,000 job openings, now that has abruptly been cut in half.  There are still jobs available, and it is still the same story…you have to work hard for your money in the Bakken…that is still the case and maybe even more so now.  I do not believe it is forever, from all signs and conversations I have had, it will recover, it may not be as high as it was before… but in time (hopefully Fall of this year) we could be seeing prices come back up.  Many of the big players have a hiring freeze, I had a friend who got a job one week and was called the following Monday and was informed that they were not hiring anymore.  She found another job elsewhere but that a little startling.

People are still packing up their car, coming to Williston (the Boomtown and Mecca of jobs) without a plan.  I just don’t get it.  I see people on Williston Connections saying they do not have money to gas up their car to keep warm through the night, much less be able to make it back home to where they came from.  They thought they would have a job in a couple of days.  They came without a plan!  I understand that when you are desperate you do desperate things, but we are an area that doesn’t have affordable housing (we still have a housing crisis) and not as many jobs available.  In that desperation sometimes you make rash decisions, everyone needs to consider those who love them and think about how you are going to make it back to them.  Make a plan, check out your options and make an informed decision. Everyone deserves a chance to make a better life for themselves, do a little research before you come, and try to time your life change when the bitter -20 degree weather won’t kill you (sometimes timing isn't on your side, I get that) Spring here is beautiful and a little magical.  It is a little different now, at least for the time being, those risk takers are always in my thoughts.   
I love this picture, Ray was at work so I got the moment all to myself  (Photo Cred. Michael Cera)

Our family is fine, so you can all stop worrying for now, I thank you all for joining us on our journey and I will never regret Ray pushing us off that cliff of self-limitations, these experiences are shaping each one of us in different ways and not one of them is bad!  With love from the Bakken…The Senior Family is doing well...even though there are days we freeze our butts off!