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!


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