March 20, 2015- Porthacath changing

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

Diagnosis – how it happened

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.

Having a little trouble …

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.

January 2, 2016

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

January 3, 2016

Paytan has gone into liver failure at 11 am this morning ……
Her portacath got infected and when it was flushed during an access the infection spread into her blood stream.
Currently the lab is growing 2 “bugs” in her sample. Have not been identified yet….
Her liver can not do all the jobs it is supposed to do.
She has had multiple platelets, blood, clotting agents and plasma products…. To help her body to fight the infection.
We are flying tonight to Sick kids in TO for her to be assessed for a liver transplant.

view from the helicopter window








January 4, 2016

I soooo wished that Paytan was awake for the helicopter ride…. because for soooo many months we watched it coming and going from our penthouse suite at CHEO…. She would been soooo excited!! I took a few pictures for her to see when she wakes up.
Paytan is not doing very well… She is now in acute kidney failure. Her kidneys have been now effected by the infection. When the liver and kidneys stop working the body starts to get backed up with toxins naturally… And being a cancer patient, and having a blood infection… She also has a build up medication she can not metabolize herself.
So…. She is currently being prepped to be put on dialysis.
With this there is the hopes that it will take stress off her kidneys to prevent further damage… And then rid her body of the toxins…. Which will in turn take stress off her liver. The liver is aka strong organ and can repair itself… IF… It doesn’t have to do the jobs too.
All of this…… We are thinking and praying that then the antibiotics will take care of the infections…. The liver can heal and ….. Hopefully her kidneys will start to produce urine again. At this point transplant is not on the table as putting a good liver into a very sick body … Is futile.
IF her liver repairs itself there will be no need for a liver transplant….. And IF the kidneys start to work again… There is no need for a kidney transplant….. We are playing waiting game now.
There was a CT scan of her brain this morning because the build up of liver enzymes were invading her brain causing swelling and causing her to be confused and intensely a danger to herself. She had to be sedated for the helicopter trip to Sick Kids.
She was taken off the sedation last night upon arrival and with her body being septic she has not woken up yet.
Her belly is swelling & badly bruised from the blood and body fluid seepage.
We are waiting to hear the results of the CT scan.


April 8, 2004 – January 6, 2016


Getting ready for the viewing.


This is Paytan’s actual heartbeat.  It is 178 beats per min.  She had SVT and her heart beat missed the 4th ventricle, therefore there is only “3” points showing in the beats. This is Paytan’s hand writing of her name.

In Memory of Paytan tattoos.

This is drawing that Paytan made for me after her father passed away.  She was 6 years old when she drew it.

Three little birds

Every morning, since you’ve been gone … this song has been playing in my head.
Your smile still is imprinted in my heart….
I’m trying hard to sing along….

Rise up this mornin’,
Smile with the risin’ sun,
Three little birds
Pitch by my doorstep
Singin’ sweet songs
Of melodies pure and true,
Sayin’, (“This is my message to you-ou-ou: “)

Singin’: “Don’t worry ’bout a thing,
‘Cause every little thing gonna be all right.”
Singin’: “Don’t worry (don’t worry) ’bout a thing,
‘Cause every little thing gonna be all right! ”

… B. Marley


June 14 2016

This year marks a stepping stone, well at least it would have been a significant stepping stone for my oldest daughter. Graduating from grade 6 and on to middle school in the fall. Her chemo treatments were scheduled to be done January 2017…And then she would have turned a full fledged teenager in April 2017. Babysitting course, guitar lessons, soccer, basketball, track…. Academics….
I look back through your past years and smile big and the tremendous amount you had al ready accomplished in such a short time. The most was your love and compassion. The ability to see past issues, problems, personalities… And into the person’s heart. You are and always will be my hero. My love for keeps growing… Our family holds you close to our hearts.
This is the yearbook page from your school…
“It’s only a bad day if you say it is”…. Baby, your words are the foundation for me ❤️
We love you always xoxoxoxoxoxo