Daddy don’t leave me…. 12.1.2013


A year ago I posted this.  Yesterday we had visitors.  We swam; the grandchildren laughed and joked, played hide and seek; we ate spaghetti bolognaise and ciabatta.  I sat looking at all the happy faces and remembered Vic clinging to Danie.  I remember the fear in her eyes.  Her desperation.  Her final Sunday.

Vic was desperately trying to finish the cards she had bought the boys.  She wanted to write the perfect words.  Words that would reach out to her boys from the grave.  I remember my fear and frustration.  Frustration that the cards had not been written and fear that it would not get done.  So much pressure in death…

IMG_8516

Tuesday brought an avalanche of visitors.  It was a very, very emotional day.  Vic was confused and seeing visions of angels and dead loved ones.

Vic’s friend Angela has been absolutely amazing.  She has sat through many hours of Vic’s tears and fears.  She has consoled and supported – at great personal expense.  I have used Angela as a sounding board and dragged her into discussions with Siza. I discussed sedation and treatment options with her.  She has hugged and messaged.  She has been a pillar of strength.

Leigh, Jared BFF’s Mom, walked in on Tuesday with armloads of flowers.  Vic’s room looked and smelled like a garden!  It looked absolutely beautiful and Vic was thrilled.

Image

Vic has refused to let go.  She is holding onto life with every fibre of her being.  She does not want visitors to leave and will try to get out of bed when they are here.

She cries and keeps asking “How do I say my final goodbyes?”

Esther visits every day.  She picks up the boys after school.  She is Vic’s guide.  “Go towards the light.  The light is good!” she keeps telling Vic.  Esther is a ray of sunshine and like the Rock of Gibraltar.  She is Vic’s sister in love.

Image

It is heart wrenching!

Vic clings to her dad and the boys.  She puts out her arms and says “Daddy don’t leave me…”  When she sees her boys she cries “Please give me a hug…”  and then “I love you more than life and then some more…”

Image

I hate my life.  I wish I were dead.

Daddy don’t leave me….


Tuesday brought an avalanche of visitors.  It was a very, very emotional day.  Vic was confused and seeing visions of angels and dead loved ones.

Vic’s friend Angela has been absolutely amazing.  She has sat through many hours of Vic’s tears and fears.  She has consoled and supported – at great personal expense.  I have used Angela as a sounding board and dragged her into discussions with Siza. I discussed sedation and treatment options with her.  She has hugged and messaged.  She has been a pillar of strength.

Leigh, Jared BFF’s Mom, walked in on Tuesday with armloads of flowers.  Vic’s room looked and smelled like a garden!  It looked absolutely beautiful and Vic was thrilled.

Image

Vic has refused to let go.  She is holding onto life with every fibre of her being.  She does not want visitors to leave and will try to get out of bed when they are here.

She cries and keeps asking “How do I say my final goodbyes?”

Esther visits every day.  She picks up the boys after school.  She is Vic’s guide.  “Go towards the light.  The light is good!” she keeps telling Vic.  Esther is a ray of sunshine and like the Rock of Gibraltar.  She is Vic’s sister in love.

Image

It is heart wrenching!

Vic clings to her dad and the boys.  She puts out her arms and says “Daddy don’t leave me…”  When she sees her boys she cries “Please give me a hug…”  and then “I love you more than life and then some more…”

Image

I hate my life.  I wish I were dead.

Tomorrow may be better than yesterday


Photo credit: http://nwwes.deviantart.com/art/Stepping-Stones-of-Memory-216271485
Photo credit: http://nwwes.deviantart.com/art/Stepping-Stones-of-Memory-216271485

Vic is rapidly deteriorating.  Last night the nausea was absolutely relentless.  With no food in her stomach Vic vomited blood.  Old blood and new blood….. Her vitals are very unstable and I thought that she would not survive the night.  I cried and slept in her bed with her.

 

Today Sr Siza tried to put up an IV drip.  Vic has absolutely no veins left that are suitable for a drip.  The sub-cutaneous driver is back up.  At this stage of the game the risk of cellulitis is less than the need for pain and symptom control.  We will reposition the subcutaneous driver as and when we need to.

Dr Sue has prescribed Cyklokapron.  “Tranexamic acid (commonly marketed in tablet form as Lysteda and in IV form as Cyklokapron in the U.S. and Australia and asTransamin,Transcam in Asia, and Espercil in South America. Also marketed as TRAXYL (Nuvista Pharma) in Bangladesh,Cyclo-F and Femstrual in UK.) is a synthetic derivative of the amino acid lysine. It is used to treat or prevent excessive blood loss during surgery and in various other medical conditions. It is an antifibrinolytic that competitively inhibits the activation of plasminogen to plasmin, by binding to specific sites of both plasminogen and plasmin, a molecule responsible for the degradation of fibrin. Fibrin is a protein that forms the framework of blood clots. It has roughly eight times the antifibrinolytic activity of an older analogue, ε-aminocaproic acid.”  http://en.wikipedia.org/wiki/Tranexamic_acid

She suggested that Vic be admitted to hospital.  Vic refused.

On the 1st of January 2013 Stepping Stone Hospice and Palliative Care started operating.  It is pretty ironic that Vic may well be our first death.

But then again, tomorrow may be better than yesterday….Today was better than last night.

 

 

 

 

 

I read in the Bible that Heaven is a great place…”


Dr Sue putting up the drip. "If we knew you were going to take a photo we would of had our hair done..."
Dr Sue putting up the drip.  “If we knew you were going to take photos we would have our hair done…”

Sue came in this morning and managed to find a vein.  The vein held for the Perfalgan and she also managed to get a bag of saline into Vic.  This will hopefully rehydrate her.  It has been a rough 24 hours with so much vomiting.  The poor child…

We hooked the saline onto a hanger and it now hangs from her ceiling.  Leon, SiL, put a hook into her ceiling and we have suspended the drip from it.  I have to keep the drip flowing until 12pm tonight when I can run another lot of Perfalgan.  Tomorrow Sue will try to find another vein.

I suggested that Vic is mainlined or a stent is fitted.  Sue agreed that it would certainly make life a lot easier.  It would be easier to administer all Vic’s IV medication.  Vic said “Sorry Mommy, no hospitals…”

Vic's drip suspended from the ceiling
Vic’s drip suspended from the ceiling

Her heart rate, even whilst she is sleeping, is constantly above 110.

The IV medication immediately helped.  Vic’s breathing is better.  Vic has not vomited since 11 am this morning!  She even managed to have a bit to eat tonight.

When Sue left today she asked me what is holding Vic back.  Medically and clinically speaking there is no explanation why Vic is still alive…. She said that she has never seen anybody fight death the way Vic does… She asked me whether we have given Vic permission to die…

Sue says that Vic still says we are going to Italy next year…. Her kidneys and liver have failed.  That is what the blood tests show.

What is holding Vic back?  Sue says death happens when one relaxes completely and deeply!  Vic’s adrenaline levels are preventing her from relaxing and dying.

All I want is for my little girl to find peace and her suffering to end.

Esther and Leon brought dinner tonight and just visited.  Vic even got out of bed for a while and had a laugh.  It was great being surrounded by the love of the family.

I wish I knew what to do to make Vic accept the inevitable.  I wish with every fibre of my body Vic will find peace.   That she will find the strength to let go…

Vic has been ill for such a long time.  Maybe she just thinks this is how life is.  Maybe she cannot remember what it is like to feel good, go out, be carefree, move without pain.  To play with her kids, go out for drinks or a movie with a friend.

On Christmas Eve Siza said to Vic “I read in the Bible that Heaven is a great place”….

Here On Earth …, There In Heaven…

Here on earth imperfection, there in heaven perfection
Here on earth discontent, there in heaven content
Here on earth disgrace, there in heaven grace
Here on earth disease, there in heaven ease
Here on earth hatred, there in heaven love
Here on earth war, there in heaven peace
Here on earth decay, there in heaven freshness
Here on earth selfish, there in heaven selfless
Here on earth oppression, there in heaven liberty
Here on earth agonize, there in heaven relax
It’s either on earth, or in heaven
The decision, all yours 

Obed Akuma
vicbaby

 Baby Girl it is time for Heaven…   You have to let go!

I don’t want to die


Today has been a very, very bad day. Sr Siza was here when Vic had a violent vomiting spell. Yesterday Vic fractured a vertebra again. Her pain is out of control. Her breathing was shallow.

“I don’t want Jon-Daniel to see me now Mommy. It freaks him out when I can’t breathe” Vic pleaded

I lay behind her back, gently holding her whilst the tears wracked through her little body.

I don’t want to die Mommy. If only I can live for another year….. But I am so tired!” Vic softly cried

Do you think we will be able to do Italy Mommy?” she asked after a long silence

I hope so Baby. I think we must take the boys with us…” I replied

Oh Mommy, can we? We don’t have to go for a long time…” Vic said

We lay quietly for a while. Vic trying to breathe through her nausea and pain and I contemplating how I am going to pull off this Italy thing… Just imagine flying with a caseload of injections and a litre of morphine syrup…

Mommy, I don’t care what you do with my ashes… It was so hard putting my father’s ashes into that wall of remembrance! Are you going to be okay Mommy?” Vic cried

My heart stopped. This was so out of the blue… “You will always be with me. I will not put you into any wall” I said

“I will be your guardian angel.” Vic said

I know but remember I will need some privacy… “I said

Don’t worry Mommy! I will make sure my father doesn’t peep as well” Vic laughed through her tears

“I am scared Mommy…”

I am scared too Vic…”

The right to live with dignity


Live_Life_to_the_Fullest_by_HM_Photography

I just read two very insightful posts that Andrew of http://lymphomajourney.wordpress.com posted/reblogged.  The first was under the heading “Why not choose death” http://lymphomajourney.wordpress.com/2012/12/04/why-not-choose-death-sunrise-rounds-sunrise-rounds/ and the second “Morphine too little or to much?” http://sunriserounds.com/morphine-too-much-or-too-little/

I read the articles through the eyes of a primary caregiver who has prayed for her child’s death many, many days.  https://tersiaburger.wordpress.com/wp-admin/post.php?post=3&action=edit .  BH, (Before Hospice), I often blogged about The Right to Die with Dignity…..

Over the past 10 years I have seen my child suffer so much indignity and indescribable pain.  I have seen the despair in her eyes, the helplessness in the eyes of her boys….I have stood next to her bed and physically pulled my hair in frustration – tears pouring down my cheeks.  I have wept before God and prayed for Vic to die.  I begged God to take away her suffering.

I advocated the right to die with dignity.

Vic has been in the care of Hospice for the past 3 months.  In this time Vic has been given a new lease on life.  Hospice cannot change the prognosis but they have given Vic quality of Life.  For the past three months Vic has been able to occasionally get out of bed, go for milkshakes with her boys, she went to Jared’s confirmation and Jon-Daniel’s honours evening.  She completed her photo albums.

Vic is in renal and hepatic failure.  Her tissue is horrendous.  Her pain is under control!  As and when symptoms surface, Vic’s medication is adjusted.  She is treated with compassion and respect.  Her wish is the teams command….

As the situation is now I am so grateful that my child is alive.  I treasure every breath that she takes.  We chat, laugh and cry.  We dream of going to Italy in 2013.

So given the situation now what would I advocate – The right to die with dignity or the right to live?

I have no doubt that if Vic’s pain and symptoms got worse, I would want her suffering to end.  If it remains as great as it is now of course I want her to live.  But it is key that Vic is allowed to live with Dignity!

As much as I advocate the right to die with dignity I believe that the final decision lies with the sick person.  It is not for family or physicians to play God.  The patient has to be the only decision maker.

I must admit that if the decision was mine to make, my child’s suffering would have ended a long time ago.

We all have the right to Live with Dignity.   There is a huge difference between breathing and living…

Breathe may refer to:  Breathing, to inhale and exhale consecutively, drawing oxygen from the air, through the lung http://en.wikipedia.org/wiki/Breathing

Life (cf. biota) is a characteristic that distinguishes objects that have signaling  and self-sustaining processes from those that do not,[1][2] either because such functions have ceased (death), or else because they lack such functions and are classified as inanimate. http://en.wikipedia.org/wiki/Life

BH (before Hospice) Vic breathed.  Now she lives.  She may not live for a long time but she has the right to live with dignity!

 

Relevant posts:

https://tersiaburger.com/2012/06/04/5-6-2012/ No one will love me ever again

https://tersiaburger.com/2012/06/12/12-6-2012/ (Eat, sleep, Vomit)

https://tersiaburger.com/2012/08/17/the-right-to-die/

https://tersiaburger.com/2012/11/15/an-end-of-life-discussion-is-one-of-the-most-important-things-to-do-right/

https://tersiaburger.com/2012/10/01/sometimes-the-pains-too-strong-to-bare-and-life-gets-so-hard-you-just-dont-care/

https://tersiaburger.com/2012/09/14/palliative-care/

https://tersiaburger.com/2012/08/22/rest-in-peace-tony-nicklinson-brave-warrior/

https://tersiaburger.com/2012/08/20/768/ (How to die in Oregan)

https://tersiaburger.com/2012/08/02/5-stages-of-dying/

https://tersiaburger.com/2012/06/13/im-going-to-dance-my-way-to-heaven-because-ive-already-been-through-hell-14-6-2012/

10 days to Christmas Eve…


DSC_0037

It has been a crazy week.  Between Vic, final 2012 business meetings, a brochure photo shoot, visiting grandchildren, Jared’s birthday party and Hospice meetings I have run around in circles.  I have not had time to blog or read all the blogs I am following.

Vic has had a reasonable week.  I can see her getting weaker every day.  At night I give Vic a Pethidine, Zantac and Buscopan injection.  The Pethidine makes her sleepy.   During the day she is able to tell me she needs an anti-nausea injection.  At night the drug-induced sleep does not allow her the luxury of early warning.  Vic projectile vomits every day of her life!

Vic has also had a couple of uncontrolled sneezing attacks and lots of hiccups.  I fear she will fracture ribs and vertebrae if we are not able to control this quickly.  I have started giving her antihistamine tablets.  Hospice tells me it is a symptom of the kidney and liver failure and will get much worse.

Her arm is still very inflamed and painful.  We are now on the 3rd round of antibiotics.  The tissue in her derriere is very poor.  It is lumpy and bruised.  It is becoming more and more difficult finding good tissue where I can inject her.

Emotionally it is really a difficult time.  Vic is spending as much time with the boys as possible.  She is doing a lot of what appears to be “lasts”….

It is 11 days to Christmas, and we are looking forward to a quiet Christmas Eve with the family.  Our gifts are not as extravagant as other years.  Our priorities are simply different this year. This year Christmas will be a time of love and togetherness.

It is 10 days to Christmas Eve…