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Camaraderie

Oncology wards are strange places. Because of the very focused nature of everyone (focus being the big C) people tend to cut through the bull very quickly. Relationships formed with staff, between parents and with other patients and their families are different. Within days lifelong friendships and trust relationships are formed.

Boeta was not alone in the ward for very long. He was soon joined by friends. Which is normally good. In a cancer ward it is always a double-edged sword. It means they are also fighting cancer. In my opinion that automatically makes them heroes. It my three year old’ s world, that automatically makes them friends.

So they can tie drip-stands together and play like there is no tomorrow.

We also made some really good friends in the wards of Panorama. My wife was especially inspirational to me with the way she later simply knew every single person in the hospital. From security to chemists, from the porters to the cafeteria staff. She also knew everything about them, how their children were doing at school, how they were coping with their ill husband and more and so much more. Inspirational and humbling how Suzanne could care so much for others when we were really struggling.

That is why I love her so much.

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Posted by on May 12, 2012 in Treatment

 

Treating a little life…a lot

In the past, whenever I visited someone in hospital, I would make sure to do a bit of a hit-and-run. Hospitals smell funny, reminds me of my granny and my perpetual fear of blood, syringes, pain and passing out.

It was quite a systemic shock to realise that we would practically be living in the hospital. Not for just a day or two, but at one stage for 5 weeks without going home.

I quickly got over my thing for hospitals. Seeing amazing people doing such amazingly unselfish work with so much Faith and compassion does that.

I must also admit that we were very fortunate in having access to such good medical care in a private hospital. We had a decent restaurant, working vending machines, satellite TV, good food and very, very smart staff.

Everything was clean, working and we were really Blessed having a medical aid that paid…and paid…and paid. The total bill was over R1.5 million. The R200k I paid out of pocket, on and above the R6500 per month for the medical aid, just about ruined me financially (along with being retrenched just after treatment stopped).

But, if you are an Oncoparent you will do anything and everything for your sick kid.

Woutertjie was very weak, but also very determined to make the most of his sudden newfound freedom to lie on his back and watch TV the whole time

His “stories” became his new best friends (initially he was the first and only pediatric oncology patient in the hospital, this changed later when his new friends, Enrico, Ethan and Duran arrived).

Cars, Toy Story, Thomas the Tank Engine, Wheels on the Bus and every other Disney/Pixar/Nexxt movie you can think of became his refuge. He knew the dialogue by heart, viewed the characters as personal friends and he lived inside his story world.

That was when he was not being prodded with needles.

It is awful if you know they must get blood samples, must get a drip in or must do some or other test… and it is going to hurt him.

Suzanne and me had the attitude from the beginning that we are not going to work against the doctors and staff. We decided to make their life as easy as possible.

After we have been thoroughly “institutionalised” and the staff knew us and knew our attitude, we could understand their frustration with some parents.

There are some real idiots.

Some parents will come into hospital with their little one having some or other non-life threatening illness. I can really understand that parents are stressed when their little beloved one is ill. But coming into hospital thinking that this is a hotel, that nurses should be available only to you the whole time, that you can be grossly rude to nurses and other parents? That is just moronic.

I had to sometimes physically restrain myself from not going and “klapping” an arrogant daddy for yelling on the staff because the food was not presented to his little one at precisely 17:27, as is the custom at his favorite hotel.

The staff should really be praised for not assaulting some of these jokers. They do not realise that their antics are taking time and attention away from children that are really ill.

Well, I allowed myself to get really sidetracked with this issue.

We were starting to settle in to hospital life. The support and prayers and friends just kept on pouring in. It was in this time that Suzanne started the Facebook Group/blog. Social media is really a blessing if you want to keep people updated on what’s happening, but you often just do not have the strength to speak to anyone.

 
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Posted by on May 6, 2012 in Uncategorized

 

Treatment

January 6, 2009.

The day after my dad’s birthday. Three days after Suzanne and my wedding anniversary. 

The semblance of uncomfortable normality between diagnosis and treatment starting was now going to be….

I guess that is the point. We really did not know what to expect. Yes, my brother and sister-in-law are both medical doctors. Yes, they explained a lot. The doctors talked. Everyone talked.

But still, stepping off the cliff, we as parents had to believe and trust.

And Boeta…

We did not know it yet, but he was going to teach us so much about Faith, Love and Care.

The journey began with a big bottle of scary orange stuff, it looked as potent and poisonous as what it was. The chemical structure looks innocent enough.

We decided that very early in this journey that “Google was not our friend.”  A lot of people cope by reading everything and wanting to know everything about cancer. Although Suzanne and me are both researchers at heart, we made a conscious decision not to Google everything. I am immensely glad we did that. Faith sometimes need a bit of blind trust. Doctors also deserve not be harassed with armchair theories on cancer. They are professionals, we trusted them that they will do EVERYTHING humanly possible to save our son, and pray for him.

Some of the side effects of Vinchristine include Constipation; hair loss; nausea; vomiting.

Seek medical attention right away if any of these SEVERE side effects occur when using Vincristine:

Severe allergic reactions (rash; hives; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); cough or sore throat; fever or chills; hearing changes or loss of hearing; mouth sores; muscle weakness; numbness or tingling of your fingers or toes; pain in the bones, muscles, or jaw; pain, redness, or swelling at the injection site; seizures; stomach pain; trouble urinating; unusual bruising or bleeding; vision changes or loss of vision.

Here are some of the notes medical professionals must adhere to when administering Vinchristine: 

Extemporaneously prepared syringes containing this product must be packaged in an overwrap which is labeled “DO NOT REMOVE COVERING UNTIL MOMENT OF INJECTION. FOR INTRAVENOUS USE ONLY – FATAL IF GIVEN BY OTHER ROUTES.”

I only Googled that today for the first time. It freaks me out and scares me to think what my little guy went through.

It also humbles me how professional the staff at Panorama were. Thanks guys, for reading all these miles of labels and ensuring you don’t kill my kid.

Chemo started, and this was only the beginning of 56 weeks.

 
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Posted by on May 4, 2012 in Uncategorized

 

Celebrating a New Year

I can honestly not remember where we were on New Years Eve 2008. The only memory is a crazy rush of emotions and a very weak and sick child. On Christmas Day we met with Christina for the first of what was going to be a LOT of times. Prof Christina Stefan is the head of pediatric oncology at Stellenbosch University. She also became a truly trusted advisor and friend. Suzanne, myself and Christina went through emotional hell together. She was really concerned about Boeta. She was really worried about the golf sized tumor in his heart. She was also very concerned about the pace at which the disease was progressing. She was also willing to fight for him. With everything she had at her disposal.

It is hard to even start thinking about how we can thank her. Oncologists work ridiculous hours. Their families must suffer so they can fight for the lives of really sick kids. She also never gave up, motivating us, liaising with staff and generally kicking butt. She also always signified hope. Professional hope.

The other relationship that meant an enormous amount to us as family is Dr. Gerrit de Villiers (pediatrician). His quiet professionalism and obvious competence, as well as his willingness to walk the difficult road with us meant so much to us. What meant most, however, was his short and powerful prayer just before we went home to “celebrate” the New Year before starting with the chemo protocol on the 6th of January 2009.

A difficult celebration, but a celebration nonetheless of family, togetherness and God’s hope.

 
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Posted by on May 4, 2012 in Intro

 

Coming to terms…

At best of times coming to terms with some things that happen in your life is tough. If it happens to your son, it is unbearable.

I guess it helps if things are happening at such pace that you just have to cope to survive.

The time up to treatment starting on the 6th of January was spent with family. Their love and support and care was everything to us. The only thing I remember is a constant stream of calls, sms’s, hugs and prayers. It was as if we were being carried by love and care.

A little three year old boy managed to mobilise so much love, care and prayer. Through it all, he was so strong. It brings tears to my eyes if I even now think back about it.

Boeta was the first pediatric oncology case to be treated at Panorama Mediclinic. I think he had such a massive impact on the whole hospital’s staff and even visitors. He became the mascot of the hospital. Everyone started to know him. He dealt with that fame with such grace and humour. Amazing EQ for a three year-old…

God’s plans for us where so great. But, to be honest, in early January 2009 we were all just brutally scared. We did not know yet how the path would be.

 
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Posted by on May 4, 2012 in Intro

 

And then it was Christmas.

When the Grové family decided to quickly run in at the family doctor’s practice before we left for Pringle Bay, we were on a roll.

Everything was packed for the holiday at my folks.

Boeta was just a bit nauseous and tired. Suzanne just wanted to make sure he does not get sick on the way to Pringle Bay. A beautiful, scenic drive of about 80 km.

When the doctor suggested we make an appointment with the pediatrician, we started to get…confused is probably the right term.

The GP felt “something”…

The roller-coaster started. Paed appointment. Tests. More tests.

Diagnosis.

“it is cancer…”

First response: “HUH??”

Second response: OK, then…. And then a combination of tears/anger/desperation/shock/pain/dammit/more tears/frantic phone calls/ more tears…

The most overwhelming emotion for me was probably the deep, deep pain I felt for my son.

The “why”; “why not me” and “what did we do wrong” all happened at the same time.

The most frustrating thing about cancer, that you do not know unless you’ve been confronted by it, is that upon diagnosis of cancer you, the doctors and everyone you talk to can tell you…nothing.

Each cancer diagnosis is unique, each individual need to be subjected to a myriad of tests to determine the type of cancer and the stage of progression.

Bet you did not know that? I definitely did not.

Not knowing what you are fighting is tough and strange. Not being able to name it is frustrating. Being rational about anything is just about impossible, especially if you see he confused look in your weak and really sick son’s eyes. He does not know what is happening. He just knows something is not right and a lot of people are teary eyed.

I know a lot of people visited us, talked to us, phoned us, hugged us on that first day as Oncoparents. Just don’t ask me who, I can only remember a roller-coaster going out of control. With no chance of getting off.

And that was Day One.

 
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Posted by on April 25, 2012 in Intro

 

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Oncodad’s approach to writing

This story will be told in retrospect. I will not aim to write down the day-to-day accounts, but rather my analysis, take-aways and memories.

My lovely wife recorded our journey on her blog, which I will refer to as source to refresh my memories and assist me in jotting down my thoughts.

The story starts here…

 
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Posted by on April 25, 2012 in Intro

 

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