Loss … how do you explain the loss of someone so close to you… someone you gave birth to… that dark empty space that was once shining.  How do you step out of the darkness and into the real world again? For me… it’s called auto pilot. A place where all my losses and sorrows are pushed away… deep down inside so that I can function day to day.  It’s the quiet times that you will see a tears in my eyes.  The down times, when I am just sitting, drifting and reflecting about what was once. Who was I then? Who am I now?  I was a wife before he passed away. Known for being that … it was always our names together when spoken to or about.  And now … it’s my name.

Same as my girls … was always my girls, the girls, their names were always said together …. and now it’s just her’s.

Loss… takes away a lot. It makes you hold closer those you can, who are still here.  My losses are deep and seem to be never ending. I can recount the passing of my pets, dogs, cat and gerbil …. a good friend in high school, an uncle, grandmother, grandfathers …  But loss can take the form of people just not being in your life anymore as well.  And I have many, many people who have walked away from my situations.  Stating that they, they can not deal with what is happening.  And they weren’t even helping… just watching.

Loss is felt deeply. And I supposed that saying that Time heals wounds could be applied here.  But does it heal the wound? Or do you just get used to the pain til it kind of numbs you?

Why is it so hard for me to let you go?  I know you are in heaven. A far better place than here on earth and in the pain you were in.  Am I being selfish to want you here?  My heart aches and my brain just doesn’t want to compute that you are no longer with me. I see the pictures of you … I re-live the events up to your passing… it took me 8 months to be able to lay your ashes to rest.  Why?  What was I waiting for?

Why can’t I accept you are gone?  My mind goes in a confusing ball of questions that swirl around and around.  All while my heart breaks for all that I know and saw you go through!  No one should have to have cancer!  It is the most horrible of diseases! I am grateful that I had the 11 years with you. Grateful because I got to see you as you were growing up.  Grateful because you were able to express yourself and let me know what was wrong.  Grateful because I have all those “I Love You Momma” in my heart to hold on to.  Combine the questions and the terrible crushing feeling I have missing you, and I am paralyzed.  Not wanting to move forward ever, cuz I can not include you.  Guilt now because I have you sister… and I wasn’t able to keep you for her.  “Get up”, I tell myself every morning.  “Get up”, and face the world.  You might have one less mouth to feed and care for… but you still have a little one to care for!  “Get up”!

It is hard to explain the mind bending thoughts I have … I’ve been told that the worse loss is that of a child.  It is not natural for the adults to loose the child first.  We are to pass down all our knowledge and ways for the children to grow and move forward after our passing.  Not them first.  We are programmed inside to care and love our children. And when one goes missing or gets hurt we are right there to aid and care.  But when they leave us, the whole is immense!  The sadness is to great!  You feel like you failed your child for not being able to keep them alive.

“I’m sorry” I told my baby as the nurses and doctors were turning off the machines… “I’m sorry,  there is nothing more I can do to allow you to stay with me.”  That feeling of complete helplessness.  That feeling for me returns again!  And I loose another one of my loves. First my sister, my late husband and now my beautiful baby girl!  That feeling of overcoming sadness that stops you in your thoughts. Makes your feet feel like cinder blocks weighing you down as you sink deeper into the sea of grief.

Why is it so hard to move forward without you?  There isn’t a day that goes by I don’t think of you. I visit your grave site regularly … searching for answers… searching for the pain to stop.

I miss you my baby Paytan… there is not a day that doesn’t go by I don’t think about what we would be doing if you were here…. I think about what it would still be like having just finished your treatments.  Would you be really walking on your own?  Would your bones have responded to the treatments we gave you in December 2015?  How would you have been doing with the nerve damage in your hands and feet?  And how would you be doing in school after all those SVT attacks (racing of her heart).  And my mind wonders to the “what ifs”…. what if you had not been taken off the antifungal medication?  What if we had gotten to the hospital earlier?  What if we just had not of left in the first place that morning?  What if? What if?   I know it is not good to think about the what ifs… but honey is it very hard not to…what if one of the what ifs I had done and you would have been still here with me?  Yes, I know… I do everything, everything humanly possible…. I even was in the last CT scan you were having telling the nurses what you like in the machine…. you were unconscious.  And honestly, you were not aware of what was happening to be upset you were going into that machine.

But what if ….

Well, today is another “event” or special date on the calendar that will pass by and be marked as one more year you weren’t here to participate in.

Do you realize… I lost your father on the year that we would have been married for 20 years… and then I lost you, five years later.  When we first got married, actually on our honeymoon, you daddy said we should make it a plan to come back on our 25th Anniversary to this very spot.  25 years later …. I am missing him and now missing you.   My heart is terrified to loose your sister!  I try so hard every day not to cling to her and to be able to give her the freedom to grow up without a mom that hovers.

Tears still flow so very quickly.  Just your name brings a vast amount of memories, smells, giggles and yes… more tears.

This year, you would have finished your chemo treatments and starting to live again…. you would have been turning 13 years old.  Thirteen… and “real teenager” 🙂 I can hear your words … babysitting course, guitar lessons, sports… all a dream that will never happen.

Oh how my heart aches!!

Hi Guys … I am working hard on this website.  I have come to a hard spot of describing my daughter’s passing … where do I start?

I’m doing my best to summarize and still get across all that happened in a short amount of time … December 19th 2016 to January 6th, 2016.  The starting … well, I guess I will start where the doctor’s took her off the antifungal medication for her liver, spleen, kidney and lung.  Please accept my apology for my slowness in writing out this part of the website … it will come soon.

Thank you for your patience. <3

This is Paytan’s portacath… She is laying down with her being on the left of the picture.
It is located about 6″ below her armpit.
There is a connection beneath her skin..(you can see in the next picture) that was inserted during surgery. There is then a tubing that goes from the needle point through her main artery towards her neck and then down into her heart.
This method is used because the toxicity of the chemos would destroy her veins upon being put through with an I….V. The port delivers the chemo directly to her heart which within a few seconds has pumped blood & chemo mixed..”everything” through her body mixed together.
The part that is changed on a weekly basis is the yellow butterfly needle and tube. It’s a fairly big needle in thickness and length.
Paytan’s connection inside is a visible lump externally… Which deceiving … The angle has to be just right… And hers has to be “pushed” in further than everyone thinks! Today was 2 attempts to insert and get blood return…. Very traumatic! She only receives freezing spray now…. The patch takes too long to work and being in MDU there was no pre-done order for Adavan….
Rough start to the morning

The morning of Sept 14th, 2014 … We were on our way to school and Paytan had been having difficulty sleeping lying down, or eating. She, in fact had pretty much stopped eating all together. Just little bits of soup or tea. Trying to sleep was a major chore!

We had recently moved her room downstairs to the basement, as she was getting older and wanted more of a “big girl” room. But she had not slept in her bed for over a week.

When I came down early in the morning to wake her for school, I actually found her sleeping sitting, well propted up. Her sides had been really bothering her. …

See the girls sometimes would get silly with each other. And that sometimes meant that they didn’t always listen to mom’s “be careful, someone will get hurt” comments. And sure enough, they had fallen off the bed in Hailey’s room. Paytan was first and Hailey on top of her. Well, unknown to us, Paytan’s liver and spleen were getting larger. So when Hailey came down on top of her, Paytan let out a very loud and pain filled scream.

Our doctor assured us that it would most likely a bruised rib or muscle and it should go away over the next few days. As Paytan continued to stop eating and complaining of her side…. I was really starting to think that there was more to the sore side than a bruised muscle.

Her tummy was actually starting to look distended.

The morning of September 14th, after I had taken the girls to school, I was walking back home to get ready to leave for work. I was walking down the path that leads to our dead end road… And emerging from the path to the road, my heart sank and I had this overwhelming devastating feeling of loss come over me.

I had lost my husband a little more than 3 years ago … And my heart was so very afraid any more loss of my family. My heart sank as I walked and went over all the symptoms Paytan had been complaining about. I made my mind up then, we would go to the hospital that evening and have her checked out.

Upon my arrival home in the evening, my baby was curled up on my bed, crying with no tears coming out and burning up. So, bundled her up and off to the hospital we went. We went to the local community hospital, because I knew it would be so busy, and our wait wouldn’t be too long for a room for her to lay down in. About 20 min we were in a room and the nurse was listening to everything we had to say. It didn’t take her long to come back with needles to take blood. Wow! That was almost as bad as Paytan as feeling… Paytan was afraid of needles. (reason for this is found in the talk about Diabetes and my late husband and dialysis).

The nurse assured Paytan that the needle was one that they used on babies and the hurt would not be as bad.   Well, that helped til she actually put the needle in her arm…. I held my baby’s other hand and kissed her head while the took several vials of blood. The nurse said it would be a little bit for the results, but they wanted us to wait in the room.

Paytan and I discussed what we thought could be the problem… Because she was so very tired and looking so pale… Almost white, I was thinking maybe mono.

Not too long, the nurse and two doctors came back into the room. There was no discussion at all. The senior of the doctors, handed me an envelop and “told” me that we leave now and head straight to CHEO. That CHEO was waiting for us to arrive.

Well, that put a huge scare into me and my daughter … But ok, off we went!

I had called home to let them know what was going on… And asked if I should look at the paperwork… Decided not… And off we went, with no stops in between.

We got to CHEO… And parked the car. Slowly walked up the ramp and into Emgency. The security guard must have been told what to look for, as he greeting us and immediately took us to a remote and isolated room with glass doors. Wow! I thought, man this must be mono and we are contagious!

Little did I know!!!

The in came nurses and more nurses and then doctors. Every time they said it would be ok for her to have a rest and close her eyes, more doctors and nurses and needles…. We had arrived their around 7:00 pm and by 11:00 pm I think we had seen everyone in the emergency dept. We still were not being told anything… Just tests and blood work. They gave Paytan medication to lower her temperature because by now it had risen to over 105 degrees Celsius!

We tried several more times to have a quick nap… And then around the wee hours of the am … We were greeted with 7 doctors of the oncology department. Oncology??? Isn’t that for cancer??

We do not have cancer… Why are you here??

Well, as they began to inform us… Paytan’s blood has been tested and they have found cancer in her blood. They call this type of cancer Leukemia. My heart sank!! And a lump in my throat! WHAT!!!?? This cant be true! You will have to test it again!

But the doctors countered with the fact that the other hospital had already confirmed, and that they had done the tests twice … And here now CHEO had also run the tests twice. It was definitely, leukemia.

BUT … They needed to do a lumbar puncture and spinal tap to determine the exact type of leukemia she had. That would be scheduled for first thing in the morning, In the meantime, they would be giving Paytan blood to help give her a little more energy and feel a little better.

What I didn’t know then, was that Paytan’s blood had not so many red blood cell anymore. Her system was being bombarded with white blood cell that went crazy. The white blood cells were multiplying at a fast rate and squishing out any possible room for the red blood cells. The red blood cells carry oxygen to all the cells in the body. When these cells are reduced, you get tired, pale and bruise very easily.

I’m having some trouble going through the pages of Facebook and re-living the torment of seeing you slip away from me.  I can so remember the day before having you diagnosed… I carried you to school because you couldn’t walk.  My heart sank as I dropped you off at school and asked for you to have an indoor recess in the quiet room…. I had to leave for work.  As I walked back home to get my car and leave for work, I had a heavy sinking feeling deep inside.  I cried out loud, Please, please don’t touch by baby girl!  Leave her alone!  But as much as I pleaded all day… I came home to her fever scorching high and in a tremendous amount of pain! Off to the hospital we went.  My mind racing thinking of all the possibilities this could be.  Never once did I think it could have been cancer.  It never ever crossed my mind.

UPDATE: ONE AS OF 45 min ago…
Main note… She is stable now, still in ICU and anti fungal medication has been re-started
Paytan has a bacterial blood infection.
So, there are a few different causes. One has not been confirm to be THE cause yet.
#1. Because any open sore is a potential source of infection… She could have got the blood infection from the sores on her mouth OR her bum.
#2. Her portacath is accessed every 4 weeks. This potentially could have been compromised during I.V. Chemo…. The infection would have started in the port line and when it was accessed the next time, the “flush” of fluid would have dislodged the infection causing it to enter her heart and be pumped through her blood.
#3. Being a cancer patient her immune system is compromised. She could have picked up a bacterial cold that because her immune is weak, settled in her liver/kidneys.

*******
Ok… the blood work shows:
that she is neurotrophic…. On the very low side.
Shows that her body has produced the by-product called lactate.(released by decaying tissue in the body) which is cleared through her liver. Thus causing her liver to be “stressed”.
She became severely dehydrated over the previous 12 hours from throwing up & pooping continuously
DEFINITELY has a blood infection… Port site and I.V. Site show same bacteria
******
CT Scan shows
fluid in her liver (enlarged)
No extra legions in her liver than before
She has gall stones – but stones are not blocking anything
Shows the beginning stages of typhlitis in her esophagus, stomach (why she has had severe indigestion) and lower bowel (typhilitis is the chemo sores inside her digestive track) This condition is what she had Oct 2014, that caused her bowels to bleed
Concern…. She is jaundice. And her levels have doubled since this afternoon’s bloodwork. This is being looked into… As her levels can cause her to become toxic.. * not good