Category: Uncategorized

We are scared


Wednesday a specialist surgeon came to see Jared. He said CT findings, such as indicated in Jared’s scan, is nonspecific and are generally “not recommended to rule out the presence of a neoplastic process such as lymphoma. A surgically obtained biopsy is required to confirm the diagnosis of lymphoma.”

Jared asked the doctor exactly what he meant. The doctor tried to avoid answering Jared.

Jared repeated his question: “What do you mean doctor?”

“We have to eliminate lymph cancer.” the doctor said.

He continued to explain to Jared that due to the position of the para-aortic lymph nodes the surgical biopsy is major surgery. A large incision has to be made to allow access to the lymph nodes situated near the aorta, right in front of several lumbar vertebrae. Jared said “Doctor I had major surgery with my Nissen Repair and it was keyhole surgery…Now you want to make a large cut for a biopsy?”

I thought it was a rather intelligent and rational question and even in the scary moment I was proud of my grandson.

The surgeon said Jared would go to theater on Thursday morning for the biopsy. He asked me to be there by 6 am so we could have a further discussion before Jared went into theater.

Jared’s eyes, when he registered what the doctor said, will haunt me until my dying day. He simply said “Oumie can we phone Mom?”

Vic’s first reaction was “Mommy I am just too sick…..” I told her Jared wanted to see her and that her dad would bring her to the hospital.

I took Vic aside and broke the news to her first. Then we spoke as a family. We went to the cafeteria and had a cup of tea. Nobody had an appetite.

Wednesday night I Googled the results of Jared’s CT scan and found the following:  “The paraaortic lymph node is lymph tissue located near the aorta, right in front of several lumbar vertebrae. Another term for the paraaortic lymph node is periaortic lymph node. As part of the lymphatic system, a paraaortic lymph node helps drain dead cells and immune system-neutralized foreign bodies. In particular, a paraaortic lymph node helps drain the organs in the pelvis and the lower part of the digestive system.”  http://www.wisegeek.com/what-is-a-paraaortic-lymph-node.htm

Five broad etiologic categories lead to lymph node enlargement, as follows:[1]

  • An immune response to infective agents (e.g., bacteria, virus, fungus)
  • Inflammatory cells in infections involving the lymph node
  • Infiltration of neoplastic cells carried to the node by lymphatic or blood circulation (metastasis)
  • Localized neoplastic proliferation of lymphocytes or macrophages (e.g., leukemia, lymphoma)
  • Infiltration of macrophages filled with metabolite deposits (e.g., storage disorders)

http://emedicine.medscape.com/article/937855-overview#a0102

Paraaortic lymph node

From Wikipedia, the free encyclopedia

Lymph node regions

 

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We left home at 5.30am on Thursday morning.  It was raining and freezing cold.

At the hospital the surgeon spent a lot of time talking to us.  He discussed the results of the CT scan and said that the most common reason for lymph nodes to enlarge is infection.  The blood tests, done on Monday and repeated on Wednesday, however showed no infection levels.  The CRP levels were perfectly normal.  The problem with Lymphoma is that bio-markers are not enough evidence for a diagnosis…

The surgeon was concerned that he had a very long theater list and that Jared had already had four anesthetics this year.  It was a long procedure….  Furthermore he had to go back to theatre in two weeks time for the removal of the stent.  We agreed that the biopsy would be delayed for two weeks…

Jared came home on Thursday.  He is on very strong antibiotics.  His kidney is still sore.  He is scared.

We are all scared.

September and awareness of pain


As a mother of a terminally ill child, who suffers debilitating chronic pain, I have researched pain extensively.  I have argued with physicians and meet with pain specialists at the pain clinic every month.  I have bullied hospital nursing staff.  I have witnessed and lived my child screaming like a wounded animal from pain….. Doctors telling her that she is a morphine addict and pharmacists double-checking and verifying Vic’s scripts…  

September and awareness of pain.

 

September and awareness of pain


 

The month of September is dedicated to help bring awareness to a very much misunderstood disease, Chronic Pain (C/P). In the USA, Chronic Pain has finally been inducted by the American Medical Association as a disease, with its own diagnostic code even though it encompasses multiple over-lapping conditions and diseases.

As a mother of a terminally ill child, who suffers debilitating chronic pain, I have researched pain extensively.  I have argue
d with physicians and meet with pain specialists at the pain clinic every month.  I have bullied hospital nursing staff.  I have witnessed and lived my child screaming like a wounded animal from pain….. Doctors telling her that she is a morphine addict and pharmacists double-checking and verifying Vic’s scripts…

Yet the levels of Vic’s pain force us to eat humble pie.  We have to go back time after time asking and even begging for pain medication.

Tracy at http://ohwhatapain.wordpress.com/ is a passionate advocate bringing awareness about this chronic illness, and this month she has a special project. Please visit Tracy’s blog. Even if you are not directly involved chances are there is someone in your life that is.  I have a headache (maybe) once a year.  I never have a tummy ache, earache, toe-ache or any ache as a matter of fact.  Yet I am a specialist on the subject of pain…  I will therefore participate as a caregiver of someone who suffers debilitating chronic pain…..

So from Tracy’s Blog this month and all month-long;

 Please answer the following questions:

  1. What condition(s) do you have that have led you to living with chronic pain?

Vic has a frozen abdomen, Osteogenesis Imperfecta, Addisons Disease and severe Endometriosis.

  • “Frozen abdomen,” is a condition  in which repeat surgeries to remove the fibrous bands create so much internal scar tissue that further surgical intervention becomes dangerous. Inflammatory conditions like appendicitis, internal infections and abdominal surgeries can cause the abdominal tissues to bind together, forming scars.  Adhesion formation in the abdominal or pelvic cavity can cause debilitating pain, nausea, vomiting, cramping. Patients with intestinal obstruction may experience constipation, diarrhea or a combination of both. In severe cases, adhesions can cause intestinal obstruction, bowel strangulation, complications with childbirth and infertility.
  • Osteogenesis Imperfecta (OI) is a genetic bone disorder characterized by fragile bones that break easily. It is also known as “brittle bone disease.” The term literally means “bone that is imperfectly made from the beginning of life.” A person is born with this disorder and is affected throughout his or her lifetime. http://www.oif.org

The condition arises from problems with the adrenal gland itself, a state referred to as “primary adrenal insufficiency”, and can be caused by damage by the body’s own immune system, certain infections or various rarer causes. Addison’s disease is also known as chronic primary adrenocortical insufficiency, to distinguish it from acute primary adrenocortical insufficiency, most often caused by Waterhouse-Friderichsen syndrome. Addison’s disease should also be distinguished from secondary and tertiary adrenal insufficiency, which are caused by deficiency of ACTH (produced by the pituitary gland) and CRH (produced by the hypothalamus), respectively. Despite this distinction, Addisonian crises can happen in all forms of adrenal insufficiency.

  • Endometriosis A major symptom of endometriosis is recurring pelvic pain. The pain can be mild           to severe cramping that occurs on both sides of the pelvis, in the lower back and rectal area, and   even down the legs. The amount of pain a woman feels correlates poorly with the extent or stage      (1 through 4) of endometriosis, with some women having little or no pain despite having extensive            endometriosis or endometriosis with scarring, while other women may have severe pain even           though they have only a few small areas of endometriosis. Throbbing, gnawing, and dragging pain             to the legs are reported more commonly by women with endometriosis.[4] Compared with women with superficial endometriosis, those with deep disease appear to be more likely to report shooting        rectal pain and a sense of their insides being pulled down.[citation needed] Individual pain areas and     pain intensity appears to be unrelated to the surgical diagnosis, and the area of pain unrelated to area of endometriosis.[citation needed]

Endometriosis lesions react to hormonal stimulation and may “bleed” at the time of menstruation. The blood accumulates locally, causes swelling, and triggers inflammatory responses with the activation of cytokines. This process may cause pain. Pain can also occur from adhesions (internal scar tissue) binding internal organs to each other, causing organ dislocation. Fallopian tubes, ovaries, the uterus, the bowels, and the bladder can be bound together in ways that are painful on a daily basis, not just during menstrual periods.[citation needed]

Also, endometriotic lesions can develop their own nerve supply, thereby creating a direct and two-way interaction between lesions and the central nervous system, potentially producing a variety of individual differences in pain that can, in some women, become independent of the disease itself.[2] http:

 2. What do you want others to know about what it’s like to live with chronic pain? (i.e.- what is it no one is saying about life with chronic pain? )

Vic has lost her spontaneity.  She has to plan every single outing well in advance whether it is a trip to the hairdresser or the doctor, watching Jon-Daniel play cricket or having a cup of coffee with a friend.  Vic has lost her ability to live.  She merely breathes.

3. Which philosophy do you ascribe to:  Keep hoping that the pain will get better or learn to adapt to life with chronic pain?

Both.

4. What do you miss the most that you feel you gave up because of chronic pain?  What do you do now to fill that void?

Playing with her boys…. Vic was never able to play ball or “touches” with the boys.  Vic spent a lot of time reading to the boys when they were younger.  Now her health and pain is at levels that prohibits any compensatory actions.

 5. What have you heard from others that made you feel better? 

“It is okay to give up….”

 6. Do you feel that people view/treat you differently? How?

People get tired of hanging around people who are always ill and in pain.  They avoid Vic.  The average person does not know how to handle her raw pain and they are scared that pain or “bad luck” is contagious.  Vicky is viewed as someone who is past her “sell by” date.

 7. What coping mechanisms have you tried that worked for you?  Which ones did not work for you? (Traditional and Non-traditional)

Vic used breathing techniques earlier in the diseases timeline.  Now it is too painful.  When Vic has a good day she will do something extravagant like pick the boys up from school and take them for a milkshake.  It allows her for a brief moment to believe that her life is normal.  It is a form of a coping mechanism.  Living the moment and pretending that her life is “normal”

Related articles

 

 

Silver Quill Bloggers Award


The Silver Quill Blogger Award

Lucinda  Elliot, an accomplished writer, nominated me for the Silver Quill  Bloggers Award. Her e-book ‘That Scoundrel Emile Dubois or The Light of Other Days’ came out in August and available from FirstyFish, Amazon, Smashwords, etc.  Thank you Lucinda.  I am so thrilled that a professional, published writer has nominated me!  Lucinda’s blog address is: http://sophieandemile.wordpress.com/ and it is well worth visiting it! I use my blog as a coping mechanism.  I have never written professionally, had anything published nor have I had any training.

My answers to the seven questions: –

1.  Do you prefer rhyming or non rhyming poetry?

Rhyming, without a doubt.

2.  Favourite Shakespeare play?

I first read Macbeth as a child and although I own the complete set of Shakespearian works, Macbeth remains my favorite.  The witches scene is liltingly beautiful and is what drew me into Shakespeare’s world.  We visited his birthplace and Anne Hathaway’s cottage in December.

3.  Favourite author?

At the present, June Rachuy Brindle for her wonderful books on the Theseus legend, ‘Ariadne’ and ‘Phaedra’.

4.  Name three people you admire.

Firstly – Nelson Mandela – one of the greatest statesmen the world has ever seen (and I have ever been privileged to meet)!   Secondly – Archbishop Desmond Tutu who is the fairest and most just man I have ever met and most importantly my beautiful daughter Vicky.  Vicky has battled ill health all her life, beaten all odds and astounded the medical world by surviving the death sentence she was born with.  She does not know how to give up.

5. What is your favourite music album?

Phantom of the Opera – Andrew Lloyd Webber

6.  Which colour do you most dislike?

Grey

7.  Name a poem or song which makes you feel emotional.

‘”Never Alone” featuring Hillary Scott and Lady Antebellum  (http://www.youtube.com/watch?v=lnNK4Alwbsw)

According to the rules, I must nominate five other bloggers.

These are : –

1. http://missmorgansmom.wordpress.com/ 

2.  http://patwoodblogging.wordpress.com

3.  http://hastywords.wordpress.com

4.  http://ourlonggoodbye.wordpress.com/

5.  http://dlmchale.com/

To Accept the Award Nominees Must Follow These Simple Rules

1. Copy the award logo and paste it onto your post.

2. Thank the person who nominated you and link back to them.

3. Answer the seven questions about yourself.

4. Nominate five more people.

“We never cry in front of the children …..”


Jared and Vic after the “news” today

Babies are emotional beings right from birth. As parents we know that babies respond to emotional expressions such as smiling within the first few weeks of life. Within three months babies can react to and express joy, interest, anger, sadness and disgust.

Babies and young children express their emotions without reservation.  In time, they however learn to control and even conceal some of their feelings, especially when they are sad, frightened, or angry.

As adults we lose our ability to communicate spontaneously.  We become guarded.  Many of us may still be comfortable expressing positive emotions, such as joy, pride and happiness, but will refrain from sharing feelings that we fear may make others uncomfortable.

The grieving process that walks hand in hand with terminal illness however catapults the bravest of us into a whirlpool of emotions ranging from fear, sadness and anger to irrational hope.

We are what we are.  If you are naturally an introvert it will be very difficult to reach out to others when we or a loved one battles a serious or terminal illness. This makes the grieving process difficult for us.  People who are comfortable in expressing their emotions are usually more able to reach out to others for the support and reassurance that they need.

When I am scared or angry I withdraw within my safe place where no one is welcome or allowed. In fear I will push people away from me.  Anger is different – I will lash out and go for the jugular.  Fear for my family will bring out the most primal instincts in me.  I will do anything to protect them.

To maintain control I hold tightly onto my emotions– I know that if I allow myself to falter even a little, I may collapse into a whimpering heap of tears.  It has taken superhuman efforts to allow Vic to see some of my pain.  Well, I fool myself that she only sees some of it.  Vic knows so well how my life will screech to an end the day her life ends… We have spoken about absolutely anything and everything.  She knows my heart.

Tomorrow morning Jared will have a lymphoma biopsy.

Today, when I saw the tears of fear form in Vic’s eyes, I said “Stop!  We never cry in front of the children”

Tomorrow I will smile, support and encourage.

Tonight I will weep for my beautiful grandson, his mother and his little brother……..I will weep for his grandfather and everyone who loves and admires him.

When I wipe my last tears I will retreat to my safe place…..  Tomorrow I will smile, support and encourage.

Whispered secrets



Jared and Jon-Daniel taking Vic for a walk during one of her hospital visits 28.8.2011

 

Whispered secrets


Jared and Jon-Daniel taking Vic for a walk during one of her hospital visits 28.8.2011

It is Monday the 3rd of September 2012.  Vic had a horrible night and looked absolutely terrible this morning.  Jared’s kidney hurt like hell and I got an appointment for him to see the urologist at 13:00.

Vic wanted to go with but Jared held her little body in his arms and said: “Mommy please stay in bed.  Oumie will take me to the doctor.  I promise I will phone you if I am scared or need you.” 

Vic sobbed uncontrollably.

“Please Mommy, you are just going to be more sore and sick if you go with now…”

Jared and Jon-Daniel are strong and terribly protective of their Mommy.  It stresses and scares them when Vic tries to do too much.  The boys are continually stressing that Vic, in her endeavors to mother, overdoes things and then pays the price.  They feel guilty…they assume responsibility for Vicky’s actions.

“Mom picked me up from school and is now very tired….”

” Mom came to watch me play cricket and is now sick in bed for a week again…”

” Mom broke another vertebra taking me to school….  “

Whilst friends and family “ooh and aahh” about how mature and responsible the boys are, their lives are lonely lives.  They are missing out on their own childhood experiences.  Most of the children in Jared’s class are having “Sweet Sixteen” parties.  Jared is invited but chooses to stay home.  He says it is because the kids smoke and drink…  But I know he does not want to leave his mother.

Until earlier this year, when Vic spoke to the boys, there were whispered secrets, secret tears when we thought they were not looking and false bravado when they were looking.  You see, although we know death is inevitable, the timing is uncertain.  It is like running a marathon without knowing any details about the timing or the course. The boys also experience guilt because they too pray that Vic’s suffering will end.

Yet Vic struggles with dying.  It is impossibly painful to leave her sons.  To let go….. To allow them to be grandmothered….

So, today I again, experienced the unbelievable selflessness of a parentified child when Jared said “Please Mommy, you are just going to be more sore and sick if you go with now…”  https://tersiaburger.com/2012/06/30/a-mothers-love-for-her-sons/

Tomorrow morning Jared will return to the operating theater for the 3rd time since the 27th of June 2012.  The sonars show at least two more kidney stones.  Obviously last week’s lithotripsy, or shock wave therapy (EWSL), (to break the stone up into smaller fragments to allow those small pieces to pass more easily into the bladder), was not the solution.  The urologist will perform ureteroscopy.  Instruments are threaded into the ureter that will allow the urologist to place a stent (a thin hollow tube) through the urethra, past the bladder, and into the ureter to bypass the obstructing stone. This stent will be left for two weeks when  Jared will once again go back to theater and the urologist will use instruments to “grab the stone” and remove it.

Tomorrow morning Jon-Daniel will go to school – fearful for both his mother and brother.  He will bravely write a maths test and excel at it.  Success and high marks are his coping mechanism.

How unfair is life.

Happy birthday my angel child!


Vic and all the men in her life admiring her PC tablet

Friday morning the boys woke Vic with breakfast and coffee.  They sang “Happy Birthday” and gave her beautiful gold earrings that they had chosen and paid for themselves.

Vic went to breakfast with Leeann at 08:00 and set off for the Beauty Parlour with Esther at 10:00.  She was home with beautiful nails at 11:30. Poor little poppet!  She was so exhausted.  She got into bed and slept for the rest of the day.

We woke her at 18:00 to get ready for dinner.  She was in too much pain.  She sobbed.

The boys spoke to her and told her “We will have takeaways and have dinner in your room Mom…like we did on Mother’s Day.  It will be fun!” Vic had spare ribs and the boys and I had wonderful hamburgers!  Danie is so health conscious he had the fish!  It was a lovely evening.  We were sprawled all over her bed, laughing and joking. I sat there and my heart filled with joy.  My beautiful little girl, her sons and my wonderful husband once again celebrating her birthday.

When Danie and I gave her a Tablet Vic was over the moon.  She loves gadgets and has wanted a PC Tablet for a long time.  Vic said “Mommy I can’t believe I got a Tablet that I don’t have to drink!”  We laughed until our tummy’s hurt.

Vic and I

We had arranged a barbeque for Saturday afternoon to celebrate not only Vic’s birthday but also Tom (son-in-law married to Lani) who has a birthday on Tuesday – 4.9.2012, Henk (grandson – birthday 2.9.2012)and Francois (Tom and Lani’s friend – birthday Monday 3.9.2012).  We hoped that Vic would have recovered enough to be able to enjoy the afternoon.  She rested until 14:00 and got dressed just in time to meet the first guests. We planned to sit under the trees but the weather turned.  A cold wind blew and we moved the party to the house.

Lani’s magical tables!

Children were running around and laughing.  Lani had prepared party packs for the kids and they had a ball!  The table settings were beautiful.  Lani is a magician!  Clusters of people were standing around chatting and laughing.  For a short while our household would appear to the world as a perfectly happy and normal household.

Vic looked so beautiful.  To the untrained eye she looked just like a normal, healthy young woman.  That is until she moved…she shuffles like an old lady!  She insisted on having photos taken with everyone as they arrived!

By 19:00 Vic was exhausted!  She conceded defeat and changed into her pyjamas on and slippers.  She came back to the table and tried so hard to hang-in.  Poor little poppet!  She cried from pain

Vic had a very bad night.  “What else can I take for pain Mommy?” became a refrain!

Last night Jared developed kidney pains again.  He said it was the same as last weekend’s kidney stone pains but worse.  This morning we decided to take him to the casualty department (ER).  Vic very bravely got dressed.  It was however very clear that she would not be able to go with.  She was just in too much pain.  She was heartbroken and sobs racked her little body.  “I am letting my son down….”

Jared had lots of pain meds and tomorrow morning we will see his urologist.

Our household is back to normal.  The laughter has subsided…..

It was a happy birthday………

Henk Birthday Boy 2.9.2012
Francois 3.9.2012 with Lani and Tom  4.9.2012 in the background

Fun was had by all!