To hair and No further

There is a reason why the word hair contains the word air ... much like air being everywhere .. so too is Kirstin's hair. Hair in the shower, hair in the bed, hair and more hair everywhere! But there is a limit as to how much one can take, so the wondering hair lost the battle by having the audacity to land up in her food. So out came the clippers and now we are No. 1.

As parents we imagined that Kirstin would actually look fine with no hair but even we were amazed at how it actually really suits her ... and our unbiased opinion is ... she looks gorgeous.

AND NOW ladies and gentlemen we proudly unveil the awesome beauty of a No.1

The Law of Pilansberg - Respect nature or face the wrath of ultimate power

Pilansberg Game Reserve has had its fair share of problematic animals but so too have the animals had a 'guts full' of problematic humans. Cars may be stronger than humans but they are nothing but 'dinkie toys' to the mighty 'Tandor'.

This incident recently took place in Pilansberg and it has been alleged that the driver of the vehicle attempted to pass the elephant ... something you just don't do! Reverse gear is something you WILL use when an elephant wants to walk on a road ... and NO ... its not negotiable.

Pilansberg - A day in the wild

Wednesday, being a public holiday, gave us the opportunity to do a day visit to the Pilansberg Game Reserve. NO we did not see the big five, in fact we have never seen the big five at Pilansberg, but at least we got to see two of the big five. The mighty Kruger National Park is THE place for spotting the 'Five' but that's a 'dash' to far for a day trip.

The trip was not about the 'Five' but more about our belief in 'nature and relaxation' and Kirstin, as per usual had a great time.

The 'two out of five' are always worth viewing and are of course, the powerhouse two

The Healing Effects of Forests - www.sciencedaily.com

Forests – and other natural, green settings – can reduce stress, improve moods, reduce anger and aggressiveness and increase overall happiness.

Science Daily (July 26, 2010) — "Many people," says Dr. Eeva Karjalainen, of the Finnish Forest Research Institute, Metla, "feel relaxed and good when they are out in nature. But not many of us know that there is also scientific evidence about the healing effects of nature."

Forests -- and other natural, green settings -- can reduce stress, improve moods, reduce anger and aggressiveness and increase overall happiness. Forest visits may also strengthen our immune system by increasing the activity and number of natural killer cells that destroy cancer cells.

Many studies show that after stressful or concentration-demanding situations, people recover faster and better in natural environments than in urban settings. Blood pressure, heart rate, muscle tension and the level of "stress hormones" all decrease faster in natural settings. Depression, anger and aggressiveness are reduced in green environments and ADHD symptoms in children reduce when they play in green settings.

Hair today.... Gone tomorrow - Day 18

Life is a really strange thing. Much like the old saying of how it takes a lifetime to build something yet a moment to destroy it ..... well that's the power of the 'red drip'! Kirstin made the 10 day mark ... then the 15 day mark ... but alas, the 'red drip' had to win sooner or later .. Day 18! Yes .. it moves quickly .. very quickly.

Thursday 2011-04-21

As predicted the hair loss began from the crown and moved outwards. At first it was only coming out when brushed but by the following day it, began to leave home at own free will, and it was everywhere ... trust me ... EVERYWHERE ...

Tuesday 2011-04-26

Luckily the back and sides still have enough hair to get away with a 'beenie' or a cap so we are still keeping the 'wigs on ice'.

Mom's R and R (Rest and Relaxation) - ABLOOM Spa - www.abloom.co.za

Any good psychologist will tell you that for any stressful event one needs to have a decent break. Even the military adhere it with their R and R principle.

Well mom took hers at a really stunning Spa Resort called Abloom. The spa is situated on a farm outside Cullinan near Pretoria and is totally designed for a true R and R. Two days there and mom is relaxed, looking and feeling good and ready to take on the world again.

Apart from the relaxed setting, the Spa has an award winning chef and the spa treatments have done her the world of good.  

As mom will tell any other mom, or dad for that matter, Abloom Spa has truly brought her stress level back down to management level. (www.abloom.co.za)

Chinese eye's - Day 17 - Swelling of the eye's

Thursday the 21st (Day 17) brought on a new side effect that we were not really expecting - swelling around the eyes. According to Kirstin says it was not really painful but the eyes do puff up quite a bit resulting in a slight 'chinese look'. Luckily, today (Day 18) the swelling has gone down and her eyes are almost back to normal.

Let the Fashion begin - Day 17 - Wigs are ready

They estimated that the 'Red' drip, the hair thief, would begin between 10 days to 3 weeks. Day 17, three days short of 3 weeks and the simple procedure of brushing hair has changed. Its no longer a case of pull the brush through the hair, its now pull the hair out the brush. So far so good as the hair is evenly thinning as opposed to really falling out and as long as no brushes or hands come near the head, the hair is still holding on.

On the plus side Kirstin has two stunning wigs on standby. She still has quite a full head of hair so she is not quite ready to model the new fashion just yet. Kirstin's choices are:

The wigs are from At Work Beauty Warehouse and are 100% Kanekalon. There is a huge array of wigs to choose from with quite a colour variety as well. I have to admit that I was surprised at how realistic they are because I was really expecting the mannequin wigs of Woolworth's or Edgar's.
As an added bonus the supplier is obviously not out to 'make a quick buck' from cancer patients because the wigs are really well, and fairly, priced.

The suppliers name is Cheryl and she can be contacted by e-mail: artworkbeauty@vodamail.co.za

Awareness Bracelets - Ebay store: I will wear pink

The bracelets that I ordered from Ebay (Ebay store - I Will Wear Pink) arrived and they are really stunning. The are gold plated and the proceeds of the sale go to the American Cancer Society. They are engraved with the poem about 'what cancer cannot do'.

What Cancer Cannot Do ... engraved bracelet

It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot eat away peace.
It cannot destroy confidence.
It cannot kill friendship.
It cannot shut out memories.
It cannot silence courage.
It cannot reduce eternal life.
It cannot quench the Spirit.

And YES ... just as I expected, our wonderful revenue service charged me import tax on an awareness item that I could not find in the RSA!! The bracelets are stunning so I really dont care if they need my money to build their mansions bigger. 

Awareness Stickers - Clickit Cutit Stickit on Ebay

As mentioned earlier, trying to find awareness items in SA is a bit like ... no comment!
So if anyone is looking for vehicle decals that can be customised to your needs, you can go onto Ebay.com and look up the seller called Clickit Cutit Stickit and they can either make the sticker of your choice or simply choose an existing style and they will create it in the colour of your choice. In our case we liked the 'fighter' decal which was in pink and they cut it in the colour violet for us.

They are not expensive and to top it off they donate 30% of the sale to the Komen Foundation to fight breat cancer.

Day 12 - Run 'Choco' run

Kirstin like most people has one ultimate and true 'love of her life' ..... here is a pictorial hint !!!

She has reached day 12 and first and foremost .... YES ... She still has hair. Secondly the effects of Prednisone have worn off and the insomnia sheep are now headed for the 'spitbraai'. She has had two good nights rest and is feeling really good.

BUT, like everything in life ... together with feeling good comes the craving for ...... well lets just say that we are living in a slight dash of fear ....

Getting her to cut back on her favourite sweet was easy, whilst the effects of chemo were still riding high, but hey, a little bit of chocolate in exchange for her feeling great .... what a bargain!
The enjoyment of that piece of chocolate, after a 12 day choc starvation diet, has even got Kirstin to take an interest in the planet ...

National Cleavage Day – How the mind changes

A year ago I would have heard about National Cleavage Day (NCD) and immediately thought of boobs. Today when I heard that it was NCD, I did still think of boobs, only this time my mind went straight to Breast Cancer. My beloved Google does not give me too much insight as to whether there is any real contribution from NCD to breast cancer awareness. I have sent a mail to Wonderbra to find out about this but I have not yet received a reply.

Yes I do believe that this initiative, apart from just clever advertising is also a ‘celebration of woman’, and that breast cancer awareness has its own day or place. I am not advocating that NCD should be used to promote awareness of cancer but I do believe that NCD could have a huge financial ‘spin off’ for cancer awareness organisations. I am advocating that those who are still blessed with their female parts and those companies that benefit from those still blessed could use this day to show off ‘their assets’, all in favour of those who no longer have these assets.

A Chemo Walk Through - Drs Thompson, Brittain and Partners Inc. - Netcare Pretoria East

It is a medical facility, but it does not feel like a medical facility. Somehow, and I can’t really work this one out, they have created a relaxed environment in amongst all the realities of a medical facility. There is no rigid “I am a doctor, she is a nurse and you a patient” structure. If the sisters did not refer to them as doctors we would not even know that they are doctors because they greet and chat as if they are ‘just one of the staff’. Kirstin does not easily befriend people, but Dr Brittain resolved that in no time by merely ‘clicking’ on to her sense of humour.

So let me take you on a Chemo day walk through:

You arrive at reception and the ladies, much to my admiration, are always friendly and go out of their way to help. You then go to an adjacent office where a sister draws blood. (Only once per week) Kirstin has a needle phobia so by the time she puts out her arm she is just waiting for any sense of pain. The sister chats and jokes with her and by that time the blood is drawn and Kirstin realises that she forgot to say ‘ouch’.

From then you proceed back to reception where they hand you your file and you walk down the passage way to the chemo room.

At first glance the chemo room is a shock, well that’s if you like me and were expecting an ICU type room with beds and machines and everything else that makes ICU so scary. The ‘shock’ is that it’s a large neatly decorated room with lazyboy chairs and a mini coffee bar. It’s a totally relaxed environment that has been made as comfortable as possible with large windows that allow for a spectacular view of Pretoria East. There is a small separate room where Kirstin lies back while they insert the IV connector into her port and then Kirstin chooses her lazyboy, gets her lines hooked up, puts her feet up and hits the buttons of her PSP. We as parents are encouraged to remain with her and we even get a chair to sit next to her. Sorry parents but you must be a patient to qualify for a lazyboy, unless of course it’s a quite day and then you are lucky. To add to the experience there is even a tea lady that makes your choice of tea or coffee. (nogal Nescafe .. not cheap skate coffee)

There are three highly qualified sisters that continuously move between the patients ensuring that everything is on track. Now, by highly qualified, I mean highly qualified to the extent that they are walking Google’s. I don’t like referring to myself as a sceptic but I am an investigator and even worse, an investigator that has entered a solid marital relationship with Google. In fact if Google was around when I got married and the minister asked “do you take this woman ….” I would have said yes … but lets Google it first. These three sisters put together are Google! Trust me, you can ask them anything from therapy to diet to you name it and they will be able to answer you.

As Kirstin will say, Chemo is not her choice of fun, but she will agree that the experience is not nearly as scary as we all imagined. I suppose that ‘scary’ is there, but it is well managed by all the staff members.

1001 Sheep 1002 Sheep ...... Insomnia

Insomnia is setting in and causing a bit of a problem. Prednisone is a steroid and insomnia seems to be a relatively common side effect of this drug so hopefully it is because tomorrow is her last dose of Prednisone. She gave school a 'bash' today and although she enjoyed the outing, the lack of sleep took it's toll. If tonight is a 'movie night' sleep replacement programme then we will rather keep her, against her will, out of school until the effects of the Prednisone wear off.

BEACOPP - The Technical Details: www.cancerhelp.org.uk

Please refer to the listed website for detailed information pertaining to the side effects of each individual drug

BEACOPP is the name of a combination of chemotherapy drugs used to treat Hodgkin’s lymphoma. It is made up of the drugs

B = Bleomycin
E = Etoposide
A = Doxorubicin (also called Adriamycin)
C = Cyclophosphamide
O = Vincristine (also called Oncovin)
P = Procarbazine
P = Prednisone (a steroid)

Bleomycin

Bleomycin is a type of antibiotic that is poisonous to cells. It binds to the cancer cells’ DNA so that the cells cannot divide or grow. It also causes ‘free radicals’ to be made inside the body. Free radicals are hyperactive oxygen atoms that damage DNA.
Etoposide
It works by blocking an enzyme called topoisomerase 2 which is necessary for a cell to divide and so grow into 2 new cells. If this enzyme is blocked, the cell's DNA gets tangled up and the cell cannot divide.
Doxorubicin (Adriamycin)
One way that it works is by blocking an enzyme called topoisomerase 2 that the cancer cells need in order to divide and grow.
Cyclophosphamide
It works by sticking to one of the cancer cell's DNA strands so the cell can't divide into 2 new cells.
Vincristine (Oncovin)
It works by stopping cancer cells separating into two new cells. So it blocks the growth of the cancer.
Procarbazine
It disrupts the growth of cancer cells by stopping the cells from making proteins and DNA. Cancer cells need to make proteins and DNA so they can grow and multiply
Steroids (Prednisolone)
There are a number of reasons why you may need to take steroids for cancer. You might have them:
To treat the cancer itself, often alongside chemotherapy treatment
To reduce inflammation
To reduce your immune response, for example, after a transplant
To help relieve sickness when having chemotherapy
To help increase your appetite
Most people who have steroids as part of cancer treatment only need to take them for a few days or weeks (short term).

Common side effects

With these drugs, many people have a temporary drop in the number of blood cells made by the bone marrow, leading to the following side effects;

Increased risk of getting an infection from a drop in white blood cells - it is harder to fight infections and you can become very ill. You may have headaches, aching muscles, a cough, sore throat, pain passing urine or feel cold and shivery.
Tiredness and breathlessness due to a drop in red blood cells (anaemia)
Bruising more easily due to a drop in platelets - you may have nosebleeds, bleeding gums after brushing your teeth, or lots of tiny red spots or bruises on your arms or legs (known as petechia).
These effects on your bone marrow can begin about 7 days after each treatment and usually go back to normal after about 21 to 28 days. Some of these side effects can be life threatening, particularly infections. You should contact your doctor if you have any of these side effects. Your doctor will check your blood counts regularly to see how well your bone marrow is working

Other common side effects include

Fatigue during and after treatment - most people find their energy levels are back to normal within 6 months to a year
Feeling or being very sick affects up to 2 out of 10 people (20%), but is usually well controlled with anti sickness drugs
Hair loss occurs in up to 8 out of 10 people (80%) but will grow back once the treatment ends
Women may stop having periods (amenorrhoea) but this may be temporary
Sensitivity to sunlight - don’t sit out in the sun, and cover up or use sun block on exposed skin
Brown skin markings may occur, following the line of the vein where the chemotherapy was injected
Brittle, chipped and ridged nails may occur but this will grow out once the treatment has ended
Gritty eyes, blurred vision or watery eyes may occur
Loss of fertility - we don’t know exactly how these drugs affect fertility so do talk with your doctor before starting treatment if this is important to you

Occasional side effects

Some people may have one or more of the following side effects
A sore mouth affects up to 8 out of 100 people (8%) and may be severe
Numbness or tingling in fingers and toes affects about 1 in 20 people (5%) and can cause difficulty with small tasks such as doing up buttons - it may start a few days or weeks after the beginning of treatment and usually gradually goes within a few months of treatment ending
Inflammation of the lungs - let your doctor know if you have a dry cough, breathlessness, chest pain or a high temperature
Damage to heart muscle - this is usually temporary but for a small number of people may be permanent. Your doctor will check your heart before and after your treatment

Woolworths to the rescue

Woolworths has always been a favourite of ours because of their willingness to sponsor food items for our school rowing camps. Being a government school we are sadly often reliant on sponsors and Woolworths has always come to the party.

Now Woolworths has done it again ... their roasted chickens are not overly spiced or overly priced and they are a welcome replacement for Kentucky, not that Kentucky will ever be replaced, but they are currently coming in as a strong contender.

And then to really mimmick the Kentucky experience Canola has a CANSA SA approved cooking oil, so 'chicken and chips' are now back on the menu.

The new Holiday schedule

Traditionally holidays like Christmas, Easter and especially school holidays have been the ultimate treat, but now we have a whole new set of holidays .... even better than school holidays ... we have Chemo Holidays!! Yes you guessed it, Chemo School is now on break till the 2nd of May.

Day 8 has come and gone and Kirstin, bar a slight headache, is feeling great. The good news of the day is that her white blood cell count, which was expected to have dropped, is better than a week ago. The kid can squat 120 kilograms ... so what was chemo thinking?

So whats her next step? Kirstin wants to try a day at school tomorrow much to my disgust. When I was a kid and if a doctor said that they could issue a medical certificate to school for me, the first thing I would have asked was "how many years will the certificate be valid for?" OK so Kirstin really does not see the merit in the fun I had doing matric twice!

BEACOPP - Day 8 was only 4 drips and went quickly, a nice closure to the first regimen.

Dexter is no longer just a TV series

Not only has Kirstin enjoyed the Dexter TV series but she now shares common ground with the lead actor. It just goes to show once again that cancer can happen to anyone.

Dexter star and new Golden Globe winner Michael C. Hall publicly revealed a battle he has been facing for over a year – he has Hodgkin’s lymphoma. The 38-year-old actor and his wife Jennifer Carpenter kept the condition secret while he underwent treatment, but has noted that his disease is in remission and the prognosis is good. (emaxhealth.com)

KFC .... The countdown

To most people KFC is an abbreviation for Kentucky Fried Chicken but to Kirstin, KFC is short for Kirstin's Favourite Chicken. Due to her limitations on spicy and 'fast' foods she has to institute a 6 month separation agreement with her beloved Colonel. We have agreed that the day her doctor gives her the all clear, she can have a barrel of Kentucky.

So to help you visualise that great day, I have inserted a picture of what that event will look like.

Almost Day 8

The end of day seven (4 days chemo break) has arrived and tommorrow is Day 8 (the last day of this months chemo regimen) ......  hoorrahhh and then a 21 day chemo break.
Kirstin has felt good yesterday and today. Today she elected to cut and style her hair (slightly shorter) in preparation for the dreaded effects of the 'red drip', and she looks amazing.

So on Day 7 the side effects are:
Fatigue but she is determined not to let it get to her
Slight sensitivity to light but more so in the evening
Short period concentration levels - I am not sure what the problem is here because I have had this side effect all my life.

Official Theme Song of The Cancer Association of South Africa (CANSA)

Heavy just does not fit in anymore

Ever since I can remember I have been a fan of Heavy Metal music and yes I still do enjoy it. I have used metal music for many psychological needs and feelings yet somehow there is just no heavy metal song that fits in with the current situation. So yes I will climb off the metal pedestal and admit that if there was ever a song that suited my psychological needs right now then it is this one.

God does not own shares in gold mines

Why did this happen to me? That is a logical question that sooner or later is asked by any person involved in any form of trauma or illness.

So what is the answer? I believe that in reality there isn’t one. The truth is that ‘bad things happen to good people’ just as much as ‘bad things happen to bad people’ and so too do ‘good things happen to good people’ and good things happen to bad people’. When a person wins the lottery do you ever here them saying “Oh no, why did this happen to me”. Things happen: period! Some people are rich, some people are poor. Some people sail through life healthy, some people suffer trauma and illness. To sum it all up, it’s called Life. Life is not about what has happened to us; it’s about what we do with whatever happens to us.

Following closely on the footsteps of ‘why did this happen to me’ comes the almighty blame game of ‘why did God allow this to happen’. When you type that question into Google, you will be amazed at the millions of different versions of so called answers to this question. Atheists use it to support their notions of no God and Christians search the bible for incidents that took place during biblical times that they feel could justify the reasons or answers to this question. I am a man who believes in a little thing called logic. I am so often stunned at how people are unable to apply logic to so many things in life.

Why are so many people looking at God and the bible to find out why something happened? Why, in times like this does the bible become a recipe book as opposed to a book of life? If you win the lotto, do you go look for the ‘recipe’ of success in the bible? I imagine God sitting and shaking his head in despair every time this happens and thinking “oh no I am again being crucified for other people’s sins”. How would I feel if a team of medical investigators entered my house and said that they are here to investigate me as the father to find out if I caused my child’s cancer? Exactly! So how does God, as a Father, feel every time this happens?

My logic dictates that God does not have the time or the need to wake up one day and decide that a 17 year girl should get cancer. Neither do I believe in the notion that He lets or allows bad things to happen to people because He has a future plan for that person. That is like saying that people like Lance Armstrong got cancer so that he could later write a book and become an icon to millions of other cancer patients. Lance Armstrong like Kirstin got cancer because its one of those unfortunate things that happen in life. Lance had an option to either make the best of a bad situation or sit back and feel sorry for himself. He had the option of using his bad experience to help others or to just live in self pity and bitterness. As much as there are bad sides to life so too are there many opportunities for good.

That’s all good and well but human nature dictates that somebody must be to blame, someone must take responsibility, we as humans are so scared that if we cant blame somebody else then we will have to seek blame in ourselves and that is just not going to happen because why on earth would we want to blame ourselves when we can blame others.

I work with explosives and believe you me they are the most awesome toys that a man child can play with. They are spectacular to watch and they wield immense power. Just as they are imperative tools in industry so too are they deadly tools of destruction pain and suffering. When a criminal or terrorist bombing, like Oklahoma City, takes place you will inevitably see victims crying out to God asking why this happened. Why are they asking God? Why are they associating God with such an incident? The truth is that they should be crying out to the Chinese and asking the Chinese why this happened. That’s right; it’s the Chinese that invented explosives. Explosives are used to access precious minerals like gold and we want gold because it is money and we are greedy and the more money we want, the more gold we must mine and to mine more gold we need more explosives and the more explosives we make the easier it becomes for them to end up in the wrong hands. God has no shares in the mining industry and God does not need or want gold or money so it is safe to say that God does not need, want or have any interest in explosives. So why does He get questioned when explosives cause pain and suffering?

In Krugersdorp acid water is posing a serious health risk to thousands of people. In time people will succumb to the effects and suffer and many of those people will look to God for the reason when the reason is already known to be an over mined environment that was not protected and looked after. Yes the mining industry is to blame but so too are we. We benefit from that mining, we support mining and we love the jewellery that those mines give us. We will criticize the mines while we show off our latest gold and diamond jewellery.

So who is to blame for Kirstin’s cancer? In essence we all are, every single one of us because for every action there are consequences, for everything we have created to make our lives easier there is a downside. We cannot live without cars and chemicals but they are some of the deadliest tools known to mankind. No I am not becoming one of these ‘save the earth, hug a tree bunnies’, I am a realist who accepts that I can’t change the fact that my child has cancer but I am also not going to blame someone specific for our misfortune.

In summary God is a Father and we can liken this to a father who gives his son a farm. The son trashes the land and destroys it and so too does his son and so too does his son. Then down the line a great great grandson farms the land and finds that his crops all die. He originally prayed that God would bless his land and now is angry because God did not give him the crop that he planned for. So he blames God and does not stop to realise that God is not a magician. It’s sad that so many religions give the idea that God is some kind of magician that waves magic wands. God is a father and treats people like that. I don’t allow my father to come into my house and dictate how I should live so being the lovingly father he accepts that and lets me carry on. Like God, my father waits patiently till I ask for help and then gives the help he can. He does not come in with a magic wand and with one wave fix all the mess ups I have made. He comes in to stand by me and guide me through the journey of repairing the damage. So the farmer cant say a prayer and expect a bumper crop to grow, he needs to ask God to stand by him through the hardship of repairing the damage that has been done so that together they will see the day that a bumper crop grows.

So no, I don’t blame God for Kirstin’s cancer and neither do I pray for miracles even though I would give my life for one. I pray for support and guidance, I pray for His guidance of the doctor’s hands and minds and for His guidance of the drugs chosen and administered. And no, I am not about to go and join the ‘save the earth’ groups because I believe that most of the damage that we have done to our Fathers farm cannot be repaired. I will rather show my support to the scientific and medical world to cure and eradicate the consequences of our life styles. After all, I believe that God has not merely sat back and watched us trash the earth, He has allowed us to do it at our own free will, but at the same time He has been giving people the mental capacity to find ways to rectify or alleviate our mistakes.     

Chemo Companion - Abby

There are so many stories, both historical and modern day, about the relationship between human and dog. There is even the somewhat religous story that the word DOG is GOD backwards because God created the dog as man's best friend or closest companion. Irrespective of what stories there are, one thing cannot be disputed and that is that a dog has always proved to be a worthy and loyal companion. Dogs or companion dogs, as they are known, have long been used to lift the spirits of the elderly and sick.

There will be days when Kirstin will suffer the downsides of this treatment and sometimes parents and friends are just not enough to raise those spirits. Kirstin, like her sister, is dog mad so we decided that it will be a viable idea to get her (wo)mans best friend and even though we are in early days 'little Abby' has already begun to take up her position as the Chemo Companion. From a medical point of view it is important that Kirstin keeps somewhat active even on the days when she is really 'bushed' and tired and believe you me, no one keeps her more active than Abby because Abby, being a Jack Russell just has no end to her hyper activity.

   

The Technical Details - http://www.cancer.gov/cancertopics/wyntk/hodgkin

To make it somewhat easier for the readers I have borrowed the basics of Hodgkins from the listed website. For an excellent and really comprehensive overview please view the listed web page.

What Is Hodgkin Lymphoma?

Hodgkin lymphoma is a cancer that begins in cells of the immune system. The immune system fights infections and other diseases.

The lymphatic system is part of the immune system. The lymphatic system includes the following:

• Lymph vessels: The lymphatic system has a network of lymph vessels. Lymph vessels branch into all the tissues of the body.
• Lymph: The lymph vessels carry clear fluid called lymph. Lymph contains white blood cells, especially lymphocytes such as B cells and T cells.
• Lymph nodes: Lymph vessels are connected to small, round masses of tissue called lymph nodes. Groups of lymph nodes are found in the neck, underarms, chest, abdomen, and groin. Lymph nodes store white blood cells. They trap and remove bacteria or other harmful substances that may be in the lymph.
• Other parts of the lymphatic system: Other parts of the lymphatic system include the tonsils, thymus, and spleen. Lymphatic tissue is also found in other parts of the body including the stomach, skin, and small intestine.

Because lymphatic tissue is in many parts of the body, Hodgkin lymphoma can start almost anywhere. Usually, it's first found in a lymph node above the diaphragm, the thin muscle that separates the chest from the abdomen. But Hodgkin lymphoma also may be found in a group of lymph nodes. Sometimes it starts in other parts of the lymphatic system.

Hodgkin Lymphoma Cells

Hodgkin lymphoma begins when a lymphocyte (usually a B cell) becomes abnormal. The abnormal cell is called a Reed-Sternberg cell.

The Reed-Sternberg cell divides to make copies of itself. The new cells divide again and again, making more and more abnormal cells. The abnormal cells don't die when they should. They don't protect the body from infections or other diseases. The build up of extra cells often forms a mass of tissue called a growth or tumours.

The doctor considers the following to determine the stage of Hodgkin lymphoma:

The number of lymph nodes that have Hodgkin lymphoma cells

Whether these lymph nodes are on one or both sides of the diaphragm

Whether the disease has spread to the bone marrow, spleen, liver, or lung.

 The stages of Hodgkin lymphoma are as follows:

1. Stage I: The lymphoma cells are in one lymph node group (such as in the neck or underarm). Or, if the lymphoma cells are not in the lymph nodes, they are in only one part of a tissue or an organ (such as the lung).
2. Stage II: The lymphoma cells are in at least two lymph node groups on the same side of (either above or below) the diaphragm. Or, the lymphoma cells are in one part of a tissue or an organ and the lymph nodes near that organ (on the same side of the diaphragm). There may be lymphoma cells in other lymph node groups on the same side of the diaphragm.
3. Stage III: The lymphoma cells are in lymph nodes above and below the diaphragm. Lymphoma also may be found in one part of a tissue or an organ (such as the liver, lung, or bone) near these lymph node groups. It may also be found in the spleen.
4. Stage IV: Lymphoma cells are found in several parts of one or more organs or tissues. Or, the lymphoma is in an organ (such as the liver, lung, or bone) and in distant lymph nodes.

Recurrent: The disease returns after treatment.

In addition to these stage numbers, your doctor may also describe the stage as A or B:

A: You have not had weight loss, drenching night sweats, or fevers.

B: You have had weight loss, drenching night sweats, or fevers

The Temperature and the Paranoid

Monitoring the temperature is important because if at any stage she gets a fever we must take her to the medical facility. There is no Idiots guide to taking a temp, because it is a very simple thing to do, however a book that needs to still be written is the Paranoid Guide to taking a Temp. When it comes to us and sick kids we stand a really good chance of being nominated for an Oscar in the obsessive compulsive disorder category. Monitor her temp means .... yes you guessed it .... take it every hour on the hour. Well that's lovely in theory but the practicality of taking a temp, under the arm at midnight, ends in a very irritated patient.
But and here is the good news: You can purchase a Infrared Ear Thermometer that measures the temp, from the ear, in a second. Man, now thats a cure for the paranoid. Now we take her temp as often as we like and she does not even know that we are doing it.
How I wish this little gadget was available when the kids were small!!

RED ...Oh NO ... The dreaded RED Drip

OK .... medical name ... I cant remember ... common name ... the RED drip. The dreaded red drip, the evil red drip .... alright time to explain
The red drip is ... and think of this from a 17 year old girls point of view who still has a matric dance to attend later this year ... the chemo substance that is going to steal her hair. So the two week count down begins to see just what hair loss she will have. Of course we are all holding thumbs that she will be in the minimal percentage rate of those whose hair only thins out, but like everything, time will tell. As a preparation we have decided on a wig style and we have three wig dealers lined up.

Three days of Chemo ... And

Well now, get ready for a little surprise in the number of IV drips that are administered. Day one I counted 16 (they are small drips but still) and I lost count on day 2 and 3.
Day one is a good 4 hour session: Blood is drawn and tested - a check up is done by the oncologist and then drip after drip after drip after ........
DAY 1 - Side Effect: Kirstin only had a slight headache which was quickly sorted out by a single Panado.
Day two is a one and a half hour drip and drip and drip and and session.
DAY 2 - Side Effect: Sensitivity to light
Day three is similar to day two and lasted about 2 hours
DAY 3 - Side Effect: Fatigue - She was really tired

Kirstin has a four day break now until Monday (Day 8). Well by a break I mean no chemo because here comes the next surprise .... each morning she must take 18 tablets: 3 chemo tabs: 14 cortisone tabs and 1 nausea tab ....  this should be fun for a girl who dislikes medication.

Signs and Symptoms: Did we miss them

Parental Love

 

Love can be a really strange thing: It's amazing how quickly one, when faced with a situation like this, tries to analyse whether you could be to blame. Did we miss a symptom, did we overlook a sign and and .. Well the answer is YES and NO. Yes there were signs and symptoms yet no because they were not according to 'the book' and no because who in their 'normal minds' associates fatigue with cancer and to add to this, we could not look for 'the signs of the book' if you have never even seen or heard of the book.

The Main Signs and Symptoms

 

Hodgkin's lymphoma signs and symptoms may include:

• Painless swelling of lymph nodes in your neck, armpits or groin
• Persistent fatigue
• Fever and chills
• Night sweats
• Unexplained weight loss — as much as 10 percent or more of your body weight
• Coughing, trouble breathing or chest pain
• Loss of appetite
• Itching
• Increased sensitivity to the effects of alcohol or pain in your lymph nodes after drinking alcohol

Analysis of the Yes and No

Painless swelling of lymph nodes in your neck, armpits or groinNO - The tumor was in her chest area between her lungs - only visible on CT Scan
Persistent fatigueYES and NO - The fatigue was not persistant but it was more than usual. In February this year we took her for a Full Blood Count test and the results showed 'normal'. She was at the peak of her rowing season and was training really hard so we wrote it off as 'training too hard'.
Fever and chills
None
Night sweats
YES and NO - Even on a cool evening she would sleep with her fan on because she gets too hot while she sleeps. There was no profuse sweating and she spent a good 3 to 4 hours a day on the water so we attributed her 'getting too hot' to a dash of sunburn.
Unexplained weight loss — as much as 10 percent or more of your body weightNo and No - in fact she gained weight.
Coughing, trouble breathing or chest pain
Yes - Here was the golden ticket but after a medical examination and a 'healthy' Full Blood Count we again wrote this off as 'training too hard'. She lost her position in three provincial races because she said that her peck muscles got sore and she felt short of breath. After collapsing at the SA Rowing Championships, both paramedics and doctors believed it to be dehydration and treated her accordingly.
Loss of appetite
NOOOOO - Kirstin loves her food especially chicken burgers, chocolate and the alpha and omega is Milo or anything that looks, smells or resembles Milo.
ItchingYes - on the odd occasions she would complain that her skin was itchy. The dams in which she rows are, well lets just say that I would not swim in them so any itching was blamed on the dam water and resolved by a Dettol bath and a moisturising cream.
Increased sensitivity to the effects of alcohol or pain in your lymph nodes after drinking alcohol
Last but not least is the most interesting: In August 2010 we were on holiday in the Kruger National Park when she asked to try alcohol. We ordered her a Strawberry Dacorie (no idea how you spell that) and after drinking it she started coughing and saying that it was burning her chest. At a later date she tried a drink again and the day after she again complained that her lungs get sore after she drinks alcohol. She even went so far as to ask whether we thought she was allergic to alcohol. AND what do you think we as parents did secretly - we got all excited over the idea that our daughter could not handle alcohol and hence would never be a drinker and we would not have to spend nights awake wondering if she was drunk and passed out somewhere.

STOP! REVERSE - How this all began

What was more shocking than the shock itself?

Trust me .. finding out that your child has cancer goes way beyond the standard meaning of 'shock'. Its more shocking than shocking if that even remotely makes sense. BUT to add to the shock was the 'dumb struck' feeling of 'but how on earth does a child that never gets sick and is at the peak of her fitness get this disease'.

Bad things can happen to anybody at anytime
Let me put you in the picture here. Kirstin is sport mad as in 'life is second to sport'. She has won gold in the South African Junior Women's Rowing Championship, the Gauteng, Kwa-Zulu Natal and Eastern Cape Rowing Championships and she rowed for the Gauteng Provincial Junior Women's league. To add to that she plays first team hockey and has played hockey for the Gauteng Provincial Junior Woman's League. She is beautiful (and thats an understatement), she is popular and ever since she squatted 120 kilogram weights she is somewhat feared at school as well...... get the picture?

Ready, Steady and ...... ACTION

Monday the 4th day of April 2011: 14:00, and the 'long road to freedom' has begun 
OK so I spent a whole weekend studying up everything I could find on the 'big web world' about ABVD and I was knowledgable and ready for this regimen. But Eishh (a South African word for 'oh my goodness') I was soon to be enlightened that sometimes Si Vis Pacem Para Bellum (My Motto in life: If you seek peace prepare for war) does not really pan out when you misjudged the ammunition of the other side. So our doctor has elected to go the BEACOPP route and of all the things that I have learned in life, one thing is for sure, dont argue with superior knowledge so if our doc trusts BEACOPP, then BEACOPP it will be. I have copied and pasted the basic concoction of BEACOPP however these medical terms are way beyong my understanding so if you have any questions pertaining to this regimen, please feel free to contact your nearest Oncologist.
BEACOPP regimen (… REH-jih-men)

An abbreviation for a chemotherapy combination used to treat advanced Hodgkin lymphoma. It includes the drugs bleomycin sulfate, etoposide phosphate, doxorubicin hydrochloride (Adriamycin), cyclophosphamide, vincristine sulfate (Oncovin), procarbazine hydrochloride, and prednisone.

So in short Day 1 is behind us and we are forging forward.
KIRSTIN'S PROGRAMME
DAY 1 - Monday: Three hours on IV line
DAY 2 - Tuesday: One and a half hours on IV line
DAY 3 - Wednesday: One and a half hours on IV line
Thursday to Sunday: Rest days
DAY 8 - Monday: One and a half hours on IV line
Then 21 Rest days
Her same programme will be repeated each month for 6 months

The 'Port' (www.medcompnet.com)

The first step to chemo is the surgical insertion of the 'port'. It sounds scary at first as it is difficult to imagine what this port thing is. I must admit that the company Medcomp gives out a nice brochure package explaining the 'new family member' but that is only after the op. So to prepare future 'port' owners I have added the web adress of Medcomp where you can download brochures and a nice animation video explaining this new 'family addition'.  Kirstin has elected not to name hers as according to her, the port is a squatter. For foreign visitors a squatter in SA is someone who takes up illegal residence on anothers land. For those that are in a hurry to see 'the port', I have posted the video clip for your convenience but it is still worth your while to go onto the Medcomp site to download the brochure.

Cancer Awareness Items SA

I have been doing a web search for cancer awareness items especially items in the colour violet, yet I have found nothing of the sort in SA websites. I find it strange that in a country with a relatively high cancer rate, not to mention the AIDS epidemic, one would think that you would find a few shops or sites selling awareness items. When I look at the rest of the world it is amazing how many shops, sites and support groups they have. I have found some great shops in the USA and UK and some really nice items on Ebay. The really sad part of this dilemma is that the SA govt. does not really like us importing things that they believe can be made in SA. So needless to say I will be taxed with import duties by the revenue service for awareness items that no one makes in SA. Its a bit like being taxed for donating money to a worthy cause. Oh well, in the end of the day, its about getting a message across and not how much extra money our govt. can make.
A really great shop for shirts is cafepress.com as well as the hodgeshop.  

Why the Blog

When 'our world changed in 60 seconds' I did what I always do when I seek knowledge: Google it! Google is amazing because it has the ability to feed a world of info yet I was looking for actual events or as we in law enforcement call it; case studies. There are a number of stories but it is still not what I wanted. I wanted a time line story that could give me an idea of what I could expect from now until the winning day. No two people are the same but when one looks at a number of 'case studies' one can build a relatively reliable picture of the 'road to freedom' as Mandela called it. I may be somewhat illiterate on the web but to date I can only find 'real life stories' of foreigners. The blog that gave me the idea to do a South African version and a blog that has really helped me is Teresa's blog. (I will link a reference when I learn how to)
So the main idea behind this blog is to maybe sometime somewhere help other parents who are like me and are impatient when it comes to the 'unknown future'. I plan to record the process for whoever whenever.