Vicky Qualifies as a Hospice Candidate…


Schedule 6 medication – 28 days supply

Just seconds ago I was thinking “What a glorious wonderful day…” when the thought crossed my mind “Hang on a minute…. It is a glorious day because Hospice have agreed to evaluate my sick child????”

Hello!!! How sick is that that our lives has degenerated into a hellhole where Hospice is good news!!

This morning Christa, an internationally acclaimed pain expert, came to evaluate Vic at home. She spent a lot of time with Danie and me to build up a case history on Vic. Christa works for Janssen Pharmaceutical Company as a “Medical Scientific Liaison: Pain”… Part of her responsibilities is to liaise and advise the Pain Clinic and Hospice as an expert!

It was as if a floodgate opened. I rambled on about Vic’s (health) background, history, symptoms, operations, treatment and decisions. I showed X-Rays and photo’s of Vic abdomen at different stages of Vic’s 10 year journey. She was shocked to hear that Vic spends 95% of her life in bed. That she is too tired to even read.

Rest of Vic’s medication – decanted

Christa told me that Prof Froehlich had phoned her the previous day and told her that “Mrs Bruce’s mom is in trouble…”  https://tersiaburger.com/2012/09/12/pain-clinic-11-9

I should have cried earlier.  I have been fighting for months to achieve this!  Then when I give up my fear, exhaustion, stress and defeat obviously showed… Maybe it is the new doctor who has not been desensitized to the suffering of the patients… Maybe there is a God of Mercy after all.

After chatting to us and taking copious notes, we got into Vic’s pain medication regime. I told her about this wonder drug, Jurnista. She just smiled and told me that Janssen’s manufacture Jurnista!  I am amazed that she consults for the Pain Clinic and Hospice and they don’t have the budget to supply Jurnista!

I eventually took her to meet Vic. (Shame poor soul got such a fright when I woke her). She examined Vic briefly, spoke some and made wonderful sympathetic sounds. I introduced her to Jared who was in bed as he was in too much pain to go to school.

She explained to Jared that she was here to evaluate his mom and would be making a recommendation that Vic be accepted into the Hospice program. She also told him we, as a family, needed to have some counselling. The psychiatrist would come to our home…. Jared told her that his pastor’s wife was coming to see him in the afternoon…. I smiled. I know the boys so well. They automatically put up barriers when they hear the word “counselling”….  (It was really the truth – Mrs Pastor did visit.  First visit in 4 years from Vic’s church…)

Christa wished Vic well, hugged me and said “Vicky clearly qualifies for palliative care. I will talk to the Hospice Palliative Care doctor and recommend that they accept Vicky into the program. I will phone you this afternoon”

At 5 pm this afternoon Christa phoned to confirm that the Hospice doctor will evaluate Vic on Monday morning at 7 am!  I read somewhere that terminally ill people often feel that upon entering the Hospice program they go from “dying from….” to “living with….”  It is my heartfelt prayer that this will be the case with Vic.

Tomorrow morning at 9 o’clock my beautiful Jared will go for his CT scan. At 12 O clock we will see the surgeon.

I have stopped thinking and researching Lymphoma.  My heart has stopped beating. It is pounding.

Jared at a guitar recital in 2011

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.

“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.