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View Cole's galleryCole Schonknecht was diagnosed with Leukemia on the 5th August 2008 shortly after his 2nd birthday.  He was always a healthy little boy so this diagnosis came as a complete shock to his family and the community.  Cole requires chemotheraphy up until the end November 2010.

Cole has been through so much but through it all he remains strong and brave.  We have so much to learn from him!  We all need to live each day to the fullest as your life can make a drastic turn at any stage - whether you are 2 or 52!
 
These are the updates that are written by Cole's mom. You can read more on the website. View images of Cole here.

 

***4 APRIL 2011***
 
So much has happened since the last update!  Unfortunately I am not getting to do the updates as regularly as I have in the past, so please forgive me.
 
Cole had a lumbar puncture and chemo on Monday (28th March).  He is scheduled to have a lumbar puncture at the beginning of his chemo cycle which runs for a period of 3 months.  It is of course a highly stressful thing to go through, both for Cole and ourselves.  I know that I have written about the whole lumbar puncture procedure in a previous update but it is a procedure that doesn’t get any easier in time.  Cole is quite happy to go to hospital for his blood tests and even iv chemo (in the vein) but he becomes quite emotional if he thinks he is going to go to the ‘sleeping room” aka the procedure room! 

We prep him before we leave home by putting numbing cream (emla) on his leg for the sedation injection and then we put the numbing cream on his lower back along the spine.  The emla is then covered by tegaderm (large square sticky plaster) to enable it to remain in constant contact with the skin and thereby numbing it within an hour.  This also prevents the cream from rubbing off on his clothes etc. 

When we do the prepping he knows what is going to happen when we get to the hospital and he becomes very upset begging us that we don’t take him to the sleeping room.  He knows when he goes to the sleeping room they make him all dizzy and he doesn’t like it.  The sedation injection goes deep into the leg muscle and within 30 seconds we notice it starting to take effect. 

After about 5 minutes, the doctor then inserts the needle into his back and withdraws spinal fluid (that gets sent for testing) and then he inserts chemo into the needle that is in the spine.  Once that needle is out his back it feels like a huge amount of weight being lifted off our shoulders! Watching our son lying helplessly on that procedure bed with tears in his eyes and spaced out from the sedation never gets any easier, and in fact seems to get harder each time! 
 
Cole has also had a nasty phlegm cough and has had to constantly blow his nose.  If he laughs too much or cries for that matter, he gets into a coughing fit and lands up throwing up – which is not always a bad thing as that way all the phlegm at least comes out.  Another strange thing is that over the weekend he spiked a temperature only in the mornings and complained of a sore tummy but by about 10am his tummy felt fine and the temperature had dropped.  He is on an antibiotic just in case something is brewing but I have never witnessed a temperature that only spikes for part of the morning and then goes back to normal. Strange!
 
Other than that, he is doing well.  He has started talking about going to school next year but more importantly he says he is going so that he can play rugby.  He is in desperate need of being in the company of boys his own age and with those who have the same interests as him.  All he wants to do is tackle and unfortunately Paige bares the brunt of his practices! 
 
Paige on the other hand has done extremely well at school this term.  She also won the school’s U8 championship gala in all 3 of the strokes (freestyle, breathstroke & backstroke).  We are incredibly proud of her!
 
Until the next update!
 
Take care
Cindy

***3 MARCH 2011***
 
Can’t believe it has already been 3 weeks since my last update!
 
In this instance, no news is good news. We have just been incredibly busy over the past weeks with events like Cole riding his first motocross race and Paige with all her sport activities as well as a biathel and school swimming gala’s etc.  I feel incredibly blessed to be so actively involved in our kids lives, it is exhausting, but it nevertheless is just such a privilege.
 
Cole did incredibly well at the motocross races.  It appears that he was the youngest boy (age 4) there and they ranged up until approximately age 9.  The first heat he didn’t ride as he had a bit of a fall in the practice just before they were about to race and I think his nerves got the better of him.  He decided to race in the second heat and came 2nd in the 50cc category.  He was neck in neck with the boy who came 1st and even passed him at one stage. 

He came 4th overall as they work on a point system and he obviously got no points for the first heat.  My nerves were shot afterwards and realized that he is a little speed freak.  I will try use my motherly influence and encourage more enduro riding than motocross!  CHOC contacted me as they heard about Cole’s race and requested me to send them a picture so that they can do a little article on Cole in their next newsletter.  I have attached a picture that Dean Venish so kindly sent to me for this article and thought I would share it with all of you.  Isn’t Cole just too cute!
 
Cole has been doing really well health wise and there has been no signs whatsoever of chicken pox.  It was just such a huge relief but found myself still counting passed day 35 which was actually quite ridiculous – I am pleased to announce that I have officially stopped counting the days!!! 
 
Kurt took Cole for chemo on Monday and said that Cole was just such a brave little boy.  He did not moan at all when they did the blood test and didn’t even flinch when they put the intravenous line in his vein for the chemo.  Who would have ever thought that a 4 year old could be so incredibly brave? 

He never questions why he needs to have blood tests taken every 2 weeks, he never complains about the days spent in hospital, never argues to take his tablets or antibiotics – he obviously has a deep understanding that this is just what is expected of him and he just gets on with his life and all that it involves.  How many of us adults need to learn this lesson?  We so often question things and waste energy unnecessarily instead of just getting on with it.
 
I can’t help but feeling that the light is at the end of the tunnel.  I can finally say that Cole’s treatment finishes this year, God willing!  He is due to finish his 3 years and 4 months of treatment in November.  It makes me feel happy to know that we can then gradually introduce him back to society.  He has got so much to look forward to….friends, school, sports, no tablets etc etc etc. 
 
This week has been a steroid week which had Cole waking up on Tuesday night around 1am shouting for food!  He told me or rather shouted at me saying that he was hungry.  I knew that it was the great steroid talking so if I told him it was too early to eat I would be shouted at so I told him to come with me to the kitchen so he can tell me what he wanted to eat, but he just sat there! 

Just then Kurt came to his room and told him it was too early to eat and that they can eat breakfast together when the sun came up – just like that, he put his head on his pillow and went back to sleep!  I have come to the conclusion that the steroids do not listen to anyone with a feminine voice – from now on I am going to talk him the deepest possible grandpa voice I can manage!  Let’s hope it doesn’t make him burst into tears!
 
Take care everyone!
Cindy

***13 FEBRUARY 2011***
 
It has been a long ‘almost’ 4 weeks since we first found out that Cole’s little friend got chicken pox and that Cole had been exposed to it on 3 separate occasions.  I battled that first week and I was an emotional wreck at times.  I immediately thought the worst and imagined my child lying in the hospital bed for days on end while I stood by helplessly watching him – that is the thoughts the Devil wanted me to have and to be honest he got the better of me that first week. 

I however made the decision to not only say that I have handed my worries and the situation over to the Lord but to truly just release it and act on my words.  As the days passed, things became easier to deal with emotionally. We were still very observant to Cole’s behaviour and watched out for anything unusual as well as watching out for any symptoms!  However, these past few weeks have been filled with a sense of peace and calmness where it could’ve so easily been filled with fear and anxiety!
 
Cole started with a runny nose last Tuesday (day 20) and I became a bit concerned that something was brewing.  I had done a lot of research on chicken pox and one of the symptoms that appear before the rash is a runny nose / headache / fever etc, so when the nose started running I became a bit concerned.  It also started during the peak incubation period of 17 – 21 days!

I am sure that I felt his forehead at least 20 times a day since Tuesday – there is nothing wrong with being overly cautious in this instance!  For those of you who don’t know me I am not a paranoid mother!  However, I feel that I don’t have to give excuses for my now paranoid state of mind when it comes to situations like this! 
 
Everyone keeps asking me why chicken pox was so dangerous to someone who has a low immune system and I didn’t quite understand it myself. So of course me being me, I did some research so that I can be educated on the matter. So for those of you I promised to let know, these are the reason’s :

“In children and adults whose immune systems are impaired by disease or suppressed by drugs (including steroids), chicken pox can affect internal organs. Children suffering from leukemia (blood cancer) or HIV infection or those on anti-cancer drugs may develop a severe variety of chicken pox.
Morbidity is due to overwhelming viremia, encephalitis, bacterial superinfection, pneumonia, and Reye syndrome. Common complications include secondary staphylococcal or streptococcal infections of the skin and upper respiratory tract, including otitis media. Central nervous system complications include aseptic meningitis and Guillain-Barré syndrome. Other complications include thrombocytopenia, arthritis, hepatitis, and glomerulonephritis”.
In children with leukemia, chickenpox can be life-threatening”.

 Quite scary reading the above hey!!!!
 
I end of with this thought :
 
We all have a decision as to how we are going to deal with our situations and the mountains we face in our lives but when you decide to hand it over to the Lord and trust him with your life, an indescribable peace fills your soul instead of the fear of the unknown that can so easily absorb all the goodness from your life.


***26 JANUARY 2011***
 
PRAYER REQUEST!!!!
 
Thanks to all those who have sent a message via facebook/cell phone/email – I have read each one and although it is impossible to reply to them all, just know that I do appreciate them.
 
To those of you who are unaware, we have had a very big scare on Monday.  Cole has been in contact with another little boy on 3 separate occasions last week and on Monday the doctor told his mom that he has chicken pox.  There were absolutely no symptoms or signs last week but he started running high temperatures on Saturday evening and his mom noticed the spots on Sunday.  Unfortunately even before any symptoms or spots appear, the person is already infectious! Now in most cases chicken pox is not serious but for those whose immune systems are compromised, it is one of the most dangerous viruses to be exposed to. The doctors have drilled it into us that one virus he must not be exposed to is chicken pox and I think that is what frightens us the most! 

Cole hasn’t been vaccinated against chicken pox and his immune system is compromised so he is at high risk!  Within 72 hours of exposure to the chicken pox virus, an injection called Varicella-zoster immunoglobulin needs to be administered intramuscular to a person whose immune system is compromised in order for it to have maximum effectiveness.  This injection helps to protect the body against such a virus.  Unfortunately by the time we knew that Cole had been exposed, the 72 hours had passed! 

The doctor nevertheless arranged for this injection to be given to Cole which was given approximately 140 hours after exposure.  It would probably not prevent him from getting the chicken pox now but would protect him for the next 3 months should he ever be exposed to it again.  This injection is extremely painful as it is a very thick needle containing 2ml of a thick gooey substance and is required to go deep into the leg muscle.  The Lord was truly with Cole as he only cried a little bit and was just such a brave little man.  Cole has also been put on an antiviral tablet 4 times a day! 
 
On Monday I had a bit of a break down as it was almost too much to handle.  For the past 2 ½ years we’ve managed to keep him away from this very thing and the minute we let him be a little boy and play with a little friend, this happens.  I know that the mom of this little boy is feeling terrible and guilty but it really isn’t her fault – her child was healthy and had no symptoms so how was she to know? There is absolutely no one to pass the blame!  What it does want me to do is literally put Cole in a little box for another year until he is off chemo – even though I know this is not good for him and beneficial it is still a realistic thought in my mind!
 
On Tuesday morning Paige called me to her room while she was getting dressed for school and told me to listen to a song from one of her dvd’s that we gave her for Christmas.  I listened and I just knew that it was God talking to me that morning…..the song said something that struck a cord deep in my soul, it said this….”MY SAVIOUR HE CAN MOVE THE MOUNTAINS, MY GOD IS MIGHTY TO SAVE, HE IS MIGHTY TO SAVE”.  It was God telling me that he is in control, that he can move whatever obstacles lie before us and nothing is impossible for him!

I stood silently in her room thanking God for using Paige as a messenger for his word for me.  He knew that my spirit was at an all time low and even getting out of bed on Tuesday and getting my day started was tremendously hard for me!  After hearing the song Paige played for me, my spirit was lifted and I knew it was a message from the Lord.  Paige never calls me into her room to listen to a specific song, she usually just sings along to a CD while getting dressed for school, but that morning it was different.  She had the song on repeat the whole morning and put it on as soon as she came home.  And guess what, she played it again (on repeat) this morning as well – the Lord clearly knows I need encouragement on a daily basis as my day is beginning!
 
So this is what lies ahead of us for the next 28 days…. the incubation period is usually 14 – 21 days but we have been told to extend that to 28 days in Cole’s case.  What that means is that for the next 28 days we have to scrutinize Cole’s body and look for any spots, we have to watch for any flu like symptoms and if he spikes a temperature he goes straight to hospital and will be put on iv antiviral medication.  Basically he is to be watched over like a hawk!
 
So here is me asking (begging?) each and everyone of you to really pray hard that this highly infectious and dangerous virus will have no place in Cole’s body.
 
With much love
Cindy

***14 January 2011***

Apologies, this update is far overdue!  Let’s just say that I have taken a LONG break from everything…I haven’t wanted or had the energy to sit and think about anything more than I really needed to.  By the end of last year my mind was like that of a pregnant woman (you mom’s will know what I mean).  Although 2010 was an exceptionally good year for Cole (he only spent one night in hospital the whole year) it was somewhat of a tiring year for both Kurt and myself.  It was just such a blessing though to reach the end of the year with our family all in tact.  Let’s just say that it is at Christmas time that we truly reflect on the year that has passed and we count our many blessings!
 
The kids had a wonderful Christmas especially as “Farmer Christmas” (as Cole says) came to visit.  The excitement was unbelievable leading up to Christmas day – the kids could barely contain themselves.  What a wonderful time of year, kids were on their best behaviour as they wanted to get on Father Christmas’s good list!  Wish it was Christmas all year round (without the expense of it though)!
 
We started this year off with Cole having a scheduled lumbar puncture, chemo and steroids.  It was an extremely stressful time for us leading up to the day – for some reason as time goes on things seem to be getting harder to deal with.  Cole is understanding a lot more the older he gets and it is just hard to explain to him when he asks what they are going to do to him at hospital. He doesn’t mind the blood tests and iv chemo but he detests the ‘sleepy room’ – this is the treatment room where they sedate him and they do the lumbar puncture.  It is really a horrible thing to watch him being sedated – he screams with pain from the sedation injection as it goes deep into his leg muscle and within 30 seconds it has started to take effect.  His eyes become glossy and start rolling and he starts drooling – he basically goes into a world of his own!  Once the lumbar puncture is over and the sedation has started wearing off, it is like an instant relief for us!  Knowing that he only needs to have another lumbar puncture in 3 months time makes things easier for us.  Cole handles it like a real champ as usual but it is never a good experience for him.
 
So we are on our final year of treatment – if all goes well, Cole will finish treatment in November!  It is going to be a bitter sweet moment when chemo comes to an end as it is almost like a ‘security blanket’ knowing that Cole is getting the medication his body needs but at the same time knowing that it is poisoning his body.  When treatment and all the medication finishes, it will be great to know his body won’t be poisoned by the medication but at the same time his body will need to produce the right cells and fight off all the bad cells on their own!  It will certainly be a new and exciting time for us and one that we can look forward to.  A trip to Disney Land would certainly be a way to celebrate the end of treatment – don’t think that would be possible but it doesn’t harm to dream! One day I want to be in a position to take my kids to Disney Land, especially Cole to experience exactly what it is to be a normal kid and to just enjoy life!  I don’t know who would have more fun, the kids or us!
 
Wishing you all a wonderful 2011 and may you and your family experience God’s mercy and abundant blessings.
 
I have attached some updated pictures!
 
With much love
Cindy

***30 November 2010***
 
So much has happened since my last update – life is just far too busy at the moment!  Most important news is that Cole recovered nicely from the nasty cough/cold/flu that he had.  Thankfully no temperatures cropped up and he felt better with each passing day.  He had been off his antibiotic for only a couple of days and then had to go on an antiviral which he had to take 3 times a day as he had 5 ulcer looking sores that appeared around his mouth. These sores have cleared up really nicely although they seem to have left some scarring.  I am hoping that the scarring will fade in time.
 
Cole has become so excited that Father Christmas will be visiting his house in 25 sleeps (and counting).  He has decided to be super duper good otherwise Father Christmas will only leave presents for Paige and he said that wouldn’t be fair!  His dialogue has changed to “sure mom”, “I will help”, “no problem”, “love you my sweetheart mom” – it’s as though he knows that he has to be extra nice to mommy otherwise it will make Father Christmas’s heart sore!  I will milk it as much as possible while he still believes in Father Christmas!!!  We decided to get in the Christmas spirit and put up our Christmas tree last night.  Our Christmas music was on while decorating and we were singing, dancing and basically having an awesome time together as a family.  I could see that Kurt was thoroughly enjoying this special time and he even commented that he felt truly blessed that Cole is here with us to celebrate another Christmas. 
 
Take a second to think about this….what if this was your last Christmas with your child, parent, sister, brother, friend? Trust me, it never crossed my mind that anything would happen to my children! I always thought that I would be the one to die before my kids because after all that is the way life is supposed to be.  You are supposed to bury your parents, not the other way round.  I have come to realise over the past two and a half years that life is incredibly short, unfair, unpredictable and stressful beyond a normal persons capabilities. 

Life never turns out the way you plan it to!  But I do know that it is through the tough times in our lives that we rely on the one person who truly understands us, who loves us unconditionally and the one who hears our cries and counts our tears – God!  So I want to take this opportunity to encourage you all to take time this Christmas to truly be thankfully and appreciate all the people in your life that mean something to you….restore broken relationships….make stronger the relationships that you have…and become a better person in doing so! You never know when their time or yours is up.
 
So tonight I want to say “Thank you Lord for the privilege of being a mother to two beautiful, intelligent, loving, funny and energetic children. Thank you for giving me a loving and supportive husband that has stood by me through thick and thin, through the hard unbearable times to the joyful lighthearted ones.  Thank you for my wonderful parents who have only ever shown their unconditional love and who have been such an example to us. Thank you for keeping me sane these past two and a half years. Thank you that I can look at Cole and know that that You are the only reason he is with us today. I have got so much to be thankful for, so Lord tonight I say THANK YOU!”


***10 NOVEMBER***

And so, Cole is sick again……!!!!!!!!!!!!

He recovered nicely from this last bout of the metapneumovirus and chemo was delayed for 8 days of chemo.  Last week Monday, Cole had another blood test and afterwards the doctor gave the all clear to continue with chemo. 

This past Monday, 8th Nov, Cole went in for his iv chemo and everything seemed to go well.  By the afternoon, I noticed he had a slight niggly cough but wasn’t anything to be concerned about.  Unfortunately yesterday it became progressively worse and for the whole of the afternoon he cried and shouted “it’s hurting, it’s hurting”.

After about 5 hours he eventually told me it was his throat that was hurting…..in my mind I was saying…of course you little turd, your throat should be sore after crying and screaming for 5 hours.  Instead, I managed to find that compassion that by this stage was hidden very deep down and said “thank you my boy for telling me what was sore, mommy at least now knows what is sore and I can try and help you”. I was actually quite impressed with myself – noddy badge for me thanks.   Needless to say his night wasn’t the greatest….his nose completely blocked up and he couldn’t breathe at all.

I took him to his pediatrician this morning and thankfully his chest is still sounding good.  According to the blood tests he isn’t neutropenic and therefore didn’t need to be admitted – Cole no doubt was thrilled to know he could go home.  He has been miserable all day and has gone through a box of tissues already.  Steroid week is always a toughie but combined with him feeling miserable, it is completely unbearable. 

Today went like this ….. him wanting me to sit with him and watch tv, then the tv must go off, he cried because it went off and immediately I put it back on, then he didn’t want me to sit by him, I would move away and then he cried because I wasn’t sitting by him, then he would go sit in the corner somewhere crying, then he wanted to play with Paige and then she would say something and he would just about kill her, literally – all this would take place in a matter of 20 minutes….the process was then repeated throughout the day.  Am I getting anyone’s sympathy yet????

Please all pray that he gets over this cold/flu or whatever it is that is attacking his body, that he doesn’t get any temperatures and that his chest remains clear


***30 OCTOBER 2010***
 
Cole landed up in hospital on Saturday evening with a temp of 39.8 degrees!  He went to sleep around 7.30pm and coughed his lungs out until about 10.30pm – when I felt him he was literally burning up.  Kurt was working night shift so I phoned him and we decided to not take any chances and took Cole straight to the hospital emergency unit.  They checked him out and decided that he needed to be admitted and go straight on iv antibiotics.  He had all the tests done – chest x-ray, blood tests, urine tests, sputum tests – we eventually got the results back and it turns out Cole has metapneumovirus! 

In healthy people, Metapneumovirus causes cold-like symptoms such as cough, runny nose, sore throat and high fever. However, people who are immunocompromised (low immune systems) are at risk of developing lower-respiratory tract infections such as bronchitis and pneumonia - obviously Cole fits into this group.  Cole got metapneumovirus in April of this year and both then and now the only symptoms were a runny nose and a cough and one high spike in temperature.  Despite him being at risk of developing all these serious complications, he barely gets the symptoms that a healthy bodied person gets.  Isn’t our Lord great!
 
On Wednesday he was complaining and crying quite a bit saying that his teeth are sore.  I found it very odd that he was saying his teeth were sore and I asked him if I could look into his mouth.  He allowed me a quick 1 second look and I spotted a sore on the side of his tongue.  Knowing that this could be a herpes viral infection, we took him to see his doctor.  I was only allowed a 1 second look at his tongue but his doctor managed to have a good look and even managed to take some photo’s of it! 

Thankfully the tests that were done showed no viral infection and it seems as though he had 2 large ulcers on both sides of the tongue.  It has been so sore for him that he hasn’t been talking or eating properly – the less he moves his tongue, the less painful it is for him.  It does seem to be getting better and the crying episodes have reduced (especially when eating).  Poor little boy!
 
Paige on the other hand is doing well.  She had her grade 1 prize giving and got a bookworm certificate (for excellent reading), the most consistent u7 netball player and the most outstanding and talented u7 hockey player.  We are incredibly proud of her!

***18th October***

So, our kids are sick – not quite the opening line I was hoping to start this update with! We haven’t had ‘sick’ kids for a while and things were going really well health wise.  About a week and a half ago, Paige started with a cough that became worse over a couple of days that was then accompanied by a snotty nose, sore throat and sore ear.  We took her to the doctor and he confirmed that although her cough was really bad, her chest sounded clear which was great news.  She was on antibiotics for about 7 days and it seemed as though she was on the mend until yesterday afternoon when the cough reappeared out of no where. 
 
Unfortunately, yesterday Cole started with a niggly cough that has now progressed into that ‘nasty’ cough that Paige had as well as a constant runny nose.  His poor nose is so red and sore from blowing it so much that it burns every time he puts a tissue to it.  So, he too is now on antibiotics.  Back to taking his temperature constantly and praying that nothing goes to his chest and that this is just a normal ‘cold’.  As I am typing this update Cole is in bed coughing!  Not quite sure what kind of night I am going to have but that is not what is important….as long as he is going to be ok.  With him not being sick for a long time, the emotions of him now being sick is almost too much to handle.  The devil sure makes the best of opportunities like this and plants seeds of doubt, worry, panic and fear!
 
I have also been told that there is a lot of chicken pox going around.  If Cole is even so much as exposed to anyone who has chicken pox he has to get an injection within 24/48 hours to help prevent him from contracting it.  The problem with chicken pox is that most of the time it is already ‘catchy’ before a person even has any symptoms or spots.  This makes it very difficult to take him into shops etc, so from hereon out he is going to be housebound as much as possible. 
 
So my daily exercise this week is ….breathe in…..breathe out….breathe in….breathe out.  Just hope I can manage this! 



***4 OCTOBER 2010***
 
Today has been ‘one of those days’!  It has been a tough day to say the least.  Cole was due for a lumbar puncture and iv chemo today so we had an early start and was at hospital by 8am.  His chest x-rays and blood tests both showed good results.  I requested additional tests to check his liver and kidney function and they both showed that they’re functioning as they should. 
 
Eventually when the medication arrived, they injected him with the sedation so that the doctor could do the lumbar puncture.  Kurt and I were both in the procedure room with Cole - I generally duck out and stand like a nervous wreck outside the door but this time, I don’t know why, but I decided to stay in the room with my ‘men’ although I stood out the way and very close to the door.  Kurt, as usual, was a star and stood with Cole the whole time, comforting him and reassuring him that everything was going to be ok.  The sedation has a terrible effect on Cole – at least from my perspective – immediately upon the injection being inserted into his thigh, he starts drooling, his eyes begin rolling and fluttering, he begins to see in double then triple then who know how much, his eyes become bloodshot and then it looks as though he is sleeping but with his eyes open.  All of that is just far too much for me to handle so that’s why I generally don’t stand around to watch. 

But as I said, today I stuck around.  The doctor made Cole sit up and bend over a pillow in his sedated state.  Kurt and the sister stood in front of Cole – the sister held Cole’s shoulders still and Kurt held his hands and spoke to him throughout the procedure.  Of course, murphy’s law, they turned Cole to the side of the bed with his back to me so I got to see the whole procedure.  Watching the whole thing was interesting yet scary….i didn’t realise just how far the needle went into the spine…watching the spinal fluid dripping out was amazing to watch yet made those legs of mine like jelly…then the injecting in of bright yellow chemo into the spine – almost was too much for me to handle!  At least I can say that I have watched it and understand exactly what happens but next time I think I will opt to stand on the other side of the door like a paranoid mom.
 
Once all was done Kurt carried him back to his room where he had to receive his iv chemo and had to remain flat on his back for an hour.  Unfortunately within 5 minutes he began throwing up which gave us such a huge fright.  He was still heavily sedated and we were unable to sit him up so we had to turn him onto his side.  He has never thrown up before so I didn’t even come prepared with spare clothes or anything for that matter.  Kurt stayed with Cole while I quickly popped out to the shops to buy him some more clothes.  By the time I got back he had stopped throwing up and was coming out of the sedation state.  Cole was telling Kurt that he could see 5 eyes on his face, then he recounted and said he had 4 eyes, eventually it was down to 3 and then after a while he could see straight and said he had 2 eyes.  It amazes me how quickly Cole bounces back.  He is at one stage sick as a dog and then comes out of it and becomes his happy and chirpy self again.
 
For the rest of the day we managed to keep him still by sitting him under a blanket in front of the tv.  Thankfully the weather was cold and miserable otherwise it would’ve been a bit of a challenge.  He ate really well at supper time and downed his 9 steroid tablets with ease.  He truly amazes me! 
 
So here is me praying for a good week and that Friday hurries along quickly so I don’t have to give Cole those awful steroids (until next month that is).


***14 SEPTEMBER 2010***
 
Cole had chemo last week Monday and of course had to have a week of steroids – in actual fact to be more precise it was 45 steroid tablets taken in 5 days i.e. 9 tablets per day.  Let’s just say we were thrilled to see that last steroid going into his mouth.  Talk about girls being emotional – if it was a competition, he would’ve won hands down! Cried and whined all the time about nothing really.  He drove me nuts and it was really hard to stay cool and calm headed.  My blood pressure rose many many many times – I am not always the most self controlled person and this experience is truly testing the limits.  I have survived nevertheless with of course those extra grey hairs that like to show their appearance.  At this rate I will be completely grey by the end of Cole’s treatment (November 2011).
 
Cole (without steroids) is truly a wonderful, amazing, loving little boy.  There are days when all he says is “love you mom, love you dad and the odd love you Paigie” – when I say that he says it all the time, I mean all the time. We will be watching tv and he would tell us he loves us, we would be playing with him outside and he would tell us that he loves us, in the bath….in the car….anywhere and at any time he tells us that he loves us.  Those words melt my heart especially when it follows with a kiss on the cheek.  He truly is an inspiration to me – he has been through so much, he has lost so much of his childhood, he has been exposed to things that even adults don’t deserve to be exposed to, he has experienced pain far beyond that which words can explain and yet he faces the world with a smile on his face.  He can still look and love the very people who take him to hospital, the very two people who say they love him more than life itself and yet still the ones who hold him down to receive painful injections etc, the ones who restrict him from seeing other kids at times, who have stopped him from going to school, who have told him he can’t take swimming lessons due to the risk of infections etc etc etc. He is my true hero!
 
Talking about swimming lessons, all that Cole wants to do is swim.  He says it is his dream to have a big pool.  He sees people have their own pools and all he wants is to have one of his own.  Of course he is specific as it must not be one that goes on the grass but must be a big one that goes in the ground.  I told him that it costs lots of money and he said “mom, that’s fine I’ve got R10”.  Oh boy, does he have no idea.  We have always wanted a pool but I wanted to wait until the kids were basically at the age they are now so that they could get good use out of it and enjoy being at their home entertaining their own friends.  I have been making some enquiries about the price of a pool and I am astounded at what they cost.  I even suggested to Kurt that I would buy him a new spade and he could start digging so long but he didn’t think my suggestion was very funny!  What is it with men? Jolly lazy bones, how much effort does it take to dig a hole!  Thinking of him working that hard actually has brought a smile to my dial (He!He!He!)
 
Paige was one of 6 girls chosen to play an U7 girls hockey match against another school last week Monday.  She was so thrilled to have been chosen and was so excited to play.  She played extremely well and even scored the first goal.  On Friday she came home to say that she was called up in assembly and got a hockey badge for being player of the match.  She was well chuffed with herself and we are immensely proud of her.  All she wants to do now is play hockey and can’t understand that she will only play next year second term as it is a winter sport.  Everyday she says “is it next term yet”?  I think this is going to be a long wait for her and a frustrating one for me!  There are those grey hairs again!
 
Just remember….. September is National Childhood Cancer Awareness Month

  • No parent should ever hear those words that their child has cancer.
  • No child should ever be robbed of any of their childhood because of cancer.
  • No family should ever have their lives turned upside down because of cancer.
  • No parent should ever be left with a shattered heart and empty arms.
  • Please join in spreading the word and raising awareness for childhood cancer. Knowledge is power. What can you do? Read…Share the stories…Share your story… donate… Blog… Tweet…Facebook…Be aware and help bring awareness to the forefront.

Spread the word!

***29 AUGUST***

Who ever said life would be easy and fair?  Sometimes I think we as humans just expect this to be the case but no doubt every now and again the reality of how unfair life is crops its ugly head. This past week another member from Kurt’s side of the family was diagnosed with cervical cancer.  Thankfully, it was caught in the early stages and doctors are going to operate on Wednesday – please can we just ask for your prayers that all goes well.  We are just shocked by the amount of people around us who are being affected by this dreadful disease.  Whenever we heard about people getting cancer, it was never our family or friends and it merely was an “Oh shame, that’s terrible” response! Since then, this disease has attacked friends and family alike! One just has to question what on earth is the cause for this disease being sparked in the human body.  The worst is that there are so many kids out there that are getting cancer and it is totally unfair! They are dropping like flies and haven't ever had a chance to really experience and live life! LIFE IS TOTALLY UNFAIR!
 
Ok, now that i have got that off my chest - Cole on the other hand is doing really well.  NAUGHTY but well!  To be honest, he is not an ugly naughty (if you know what I mean), I think this naughtiness is one purely brought on from boredom and poor Paige gets the brunt of it.  As soon as Paige gets home, he is so thrilled to have someone to play with that he just goes a bit moggy and wants to tackle her and play rugby with her and basically just being a boy.  For those of you who know Paige, she is a girlie girl and doesn’t appreciate being tackled!  I’ve told Cole that the only person that he can be rough with is Kurt, the only problem with that is the more Cole is rough with Kurt, Kurt gets rough with Cole and of course ends up in tears (sometimes even Kurt when he gets a knee in the wrong place).  So Cole opts to rather play rough with Paige and that way he is almost guaranteed not to get hurt!  At least I can say that he really loves his mom to bits and would never hurt me, so I am in the all clear from the rough games.  I am becoming the referee though and that sometimes isn’t a nice position to be in.  Cole SO needs boy friends his own age to play with!
 
We also took Cole back to the Dermatologist for a check up on the rash.  He once again settled our fears and confirmed it was not leukemia cutis.  He still is sure it is a skin condition called Keratosis Pillaris and although he does say it has appeared in a very strange matter, the fact that it is asymptomatic and not bothering Cole at all, it is just something we are going to have to accept it for what it is.  Hopefully in time it will disappear and that would be the last we ever see of this ‘chicken skin’ rash.
 
Besides that, we are all well and are grateful for each day that we can spend together!



*** 5 AUGUST 2010 ***

I am sure I am ageing far beyond my actual years…..and I have the greys to prove it!  I started going grey in my early 20’s (thanks to my dad who also went grey early on in life) but I think now with all the stress my greys are making the most of it and have decided to do some overtaking (greys, this is an unwelcome decision). I suppose this is the least of my concerns although dying my hair every 3 – 4 weeks is becoming tedious and a stress all on its own! So if you see those unsightly greys when you see me next, pretend they are not there!
 
Now to explain some of the stress we have been dealing with (Kurt also coming out with greys but then again he is 38)…In my update of the 18th July, I mentioned that Cole came out with a rash on his tummy and thighs and after blood tests were done it revealed no allergies but low immunoglobulin (his immune system has just taken a huge knock with all the treatments the past 2 years).  Cole’s Paediatrician was just not sure what was causing the rash and referred us to a Dermatologist. 

We went to see the Dermatologist and he said that Cole has something called Keratosis Pillaris - it is a very common genetic follicular condition that is manifested by the appearance of rough bumps on the skin. He also said Cole’s skin was extremely dry and prescribed some cream to help get his skin moisturized etc.  He also mentioned that it usually only appears on the arms or face but finds it strange that it appears on Cole’s stomach and legs.  We came home feeling relieved that it was nothing serious….until of course a couple of days later I looked up on the internet (not always the brightest thing to do). 

I came across something called Leukemia Cutis which is extremely rare but considering that Cole had more of a chance winning the national lottery than getting Leukemia, that meant nothing to me.  Immediately I started doing some research on it that got my heart racing to the point I felt like passing out.  Leukemia Cutis is when the skin is infiltrated by leukemic cells and it has a very poor prognosis. The rash is usually a sign before a person is diagnosed but can also appear once someone is on treatment and can appear before anything shows up on the blood tests and bone marrow. Boy, did the devil take the opportunity to plant the seed of doubt in my mind.  He truly is wicked!! 

I then phoned the Paediatrician and the Dermatologist to advise that I came across this and both of them said it wasn’t.  That set my mind at ease for another week or so until Kurt phoned me one day at work to say that he was rubbing cream on Cole and that the rash had spread all over the body (over night) and the spots looked completely different on his arms.  Kurt felt uneasy about this and we made arrangements for Cole to go straight into the Dermatologist.  Thankfully, he still maintains that it is not Leukemia Cutis and also said that the rash could have been caused from Cole being on treatment for so long and his body has been exposed to so many toxins. 

The Dermatologist does not know what the different looking spots on his arms are but doesn’t seem too concerned.  If they do not disappear in 4 weeks he suggested that they do a skin biopsy to see exactly what it is.  Let’s pray they disappear.  STRESS…..it feels as though we are living with our hearts on our sleeves.  Let’s pray my poor heart doesn’t fail on me.
 
Oh, and while we were at the Dermatologist, the secretary knocked on the door and led  Cole’s Paediatrician in.  I am generally not a stress head but lately, I am the queen of stress when it comes to my children.  So, what does the queen of stress think….something is wrong or why else will the Paediatrician come to the Dermatologists office while we so happen to be there.  I got an instant headache and I could hear my heart in my ears…never a nice feeling.  I seriously thought that he was coming to break some bad news to us (once again the devil planted a seed of doubt). 

It turned out that the Dermatologist is new in town and the Paediatrician just wanted to meet him especially since he will be referring kids to him (the Dermatologist specializes in paediatric dermatology).  It just so happened that he rocked up the same time we were there.  Coincidence!  Needless to say, I had a headache for 2 full days with 2 full nights of battling to sleep because of it.  I so need to book myself into a health spa for a weekend with only things like massages and pampering on the cards, instead of doctors, hospitals and medication!

Cole is due to have his monthly chemo session at hospital on Monday with the wonderful accompaniment of steroids for the week. Yippee, more grey hairs.

Mom’s and Dad’s hug your kids everyday!

***18 JULY 2010***
 
I know it has been a while since the last update as I just haven’t been able to motivate myself to sit down and make myself think what has all taken place in write down do an update.   There is so much that seems to happen that it almost is so overwhelming to still sit down and put it in writing…nevertheless, I owe it to each and everyone of you who faithfully wait for these updates and to those who even send me messages asking when the next update will be posted/emailed.
 
Cole had his tri-monthly lumbar puncture and iv chemo on Monday (12th July) which is never an enjoyable day for both him and us.  After Cole has a lumbar t puncture he is required to lay flat on his back (with no pillow) for at least one hour – if he sat up within this time period it could cause him to have a terrible headache. This generally is not an issue as he is still heavily sedated and it takes about this time for the sedation to wear off enough for him to want to sit up.  This time however he was feeling very nauseous and wanted to get sick on a number of occasions. Thankfully he never got sick otherwise it would’ve been a mission to keep him lying flat on his back at the same time.  It was also a week of steroids which went well besides having the odd scene here and there.  Whenever Cole had one of his ‘melt downs’ Paige would hop around and act all silly to try and get him to laugh – which most of the time did work.  We love you Paige – you are an essential part of steroid week!
 
Cole has also had a rash on his tummy and thighs for a while that has got progressively worse. His doctor wasn’t sure what it was so he decided to take extra blood on Monday and send it off to test for allergies etc.  These tests came back showing no allergies but did reveal low immunoglobulin levels.  When Cole’s doctor phoned me on Friday, he said that this convinces him that Cole must not go back to school until he has finished his treatment (November next year)….He said kids that have immunoglobulin levels often get sick and it just wouldn’t be worth it after all we’ve been through.  I was secretly hoping that he could go back to school just for the mornings from next year – from an educational point of view but mostly so that he can be reintegrated socially around children his own age and without having to rely on mom, dad or sister being around.  He is quite happy at home and he doesn’t even want to go to school but he SO needs to go.  He is becoming jolly naughty and quite a handful at times mostly because I think he gets bored and constantly requires to be entertained and stimulated.  Oh well, so here’s praying for something else…patience, patience and more patience. 
 
I have attached 2 pictures from his birthday in Cole's gallery.  He is growing so big!
 


***26 JUNE***
 
Wow, it’s time again for another update….can’t believe how time is flying lately!  It has almost been 2 years (on 5 August) since Cole was diagnosed with leukemia.  It feels like just the other day and yet on the other hand feels like a lifetime ago.  So much has happened these past 2 years, a lot of it which feels like a blur.  I think back and cant think of much, besides…the day Cole was diagnosed (that memory is clear as day), the many days spent in hospital, medicines, chemo sessions, the miracles that God has performed, the immense love I realise I have for my kids and husband, Paige’s first day of school, the many prayers that we’ve prayed and the many tears that we’ve shed!  Looking back I realise that these past 2 years have been immensely tough but I believe with all my heart that the Lord has carried us through everything.  Thank you Lord – without you I am sure I would’ve landed up in a mental institution and on anti-depressants.
 
As you all know, we have had the privilege this month to celebrate Cole’s 4th birthday – what a true blessing this was.  Cole is still talking about his party.  Cole got a 2 wheeler for his birthday and all he has been wanting to do is ride his motorbike.  I didn’t realise a 4 year old was even capable of operating a 2 wheeler but once again my little boy has proved me wrong.  What an adrenaline junkie he is turning out to be – the first day riding he started going over ramps….my poor heart (not quite sure how many more shocks it can take!).  I’m a big fan of getting kids out the house and into the fresh air so I reassure myself that this is truly good for him.  I will just be watching him through my fingers! I have posted a video for you all to see.
 
The day after Cole’s birthday he had to have iv chemo.  It went fine (as good as a chemo session in hospital can I suppose) and he was all so happy to get home once it was finished.  That week he was on steroids and boy what a tough week it was.  They really affected his moods and temper and those 5 days felt like 2 weeks.  By the end of the week Kurt and I were ready to pack our bags and go on a holiday somewhere.  Thankfully it was over and we still have hair!!!!!
 

HAPPY BIRTHDAY COLE
 
What a wonderful last couple of days we have had…East London has experienced a bit of rain which is so badly needed and the rain stayed away to enable us to have Cole’s 4th birthday party.  What a great time Cole had at his party. 

We had his party at the little train at Gonubie Farmer’s Hall. Honestly, for the whole 2 hours of his party, he didn’t get off it!  He said to me afterwards “Thanks mommy for the best party ever”. 

Cole, unfortunately wasn’t able to have a birthday party last year as he wasn’t able to mix with other kids.  I think he was too young to know what he had missed out on but boy did we make up for it this year!  He was so happy to have all his family and little friends around him (although about 10 couldn’t make it as they were a little sick and we take no chances) .

Cole also insisted that we invite his doctor which we did just to amuse him, but we were most impressed when his doctor arrived at his party.  Cole jumped off the train (which luckily at the time was parked at the station while everyone was getting on) and ran to say hello to him.  His doctor was absolutely awesome and took so much interest in Cole – he even ran after the train (on a few occasions) snapping away with his camera!  Cole also called him to come sit on the train with him which he so gracefully did. 

We are so blessed to have this amazing doctor looking after Cole – he is an absolutely awesome guy who has so much time for Cole and never once have we been let down with him.  He is a pediatrician and thus is always so busy yet every time I need to speak to him about Cole he takes my call despite what he is busy with.  Cole does not associate any pain with him and has learnt to trust him. 

We have all learnt to trust him as he is a gentle man and most importantly is an excellent doctor who takes no chances!  I spoke to him the other day about when is would be safe to send Cole back to school…his reply….wait until Cole is finished treatment.  Wow, what a blow! 

We were hoping to send him to school next year but in true fashion his doctor takes no chances and says that it would be too much of a risk for Cole to constantly be around children as kids always get sick.  Cole only is due to finish treatment in November 2011 so that means he will only go back to school when he is 5 ½ years old. 

I am not concerned about Cole falling behind academically as he is quite a bright child, but our concerns are that Cole is becoming extremely bored at home and is in desperate need to be around other children on a regular basis.  With boredom comes naughtiness….this is the stage we are at now!  But, we will trust his doctor as he knows best!
 
Paige unfortunately has a bit sick at the beginning of the week after being sent home from school on Monday with a temperature.  She was shipped off to my folks so that Cole wouldn’t be around her and exposed to whatever she had.  She came back home on Tuesday afternoon and we had to keep her in our bedroom with the door closed so that Cole couldn’t go to her. 

She stayed in our bedroom for the whole of Wednesday as well and only came out in the evening as she had been without a temperature for 2 days.  She was so good to stay in our bedroom without being able to come out – it was harder for Cole though as all he wanted was his sister. 

Paige on the other hand knew what the risks were so she stayed in our room without complaining. At least she could watch her girlies movies in peace!  My heart breaks for Paige as she has to give up so much as well with so often not getting any recognition.  We make a point though of telling her how special she is and that she is the best sister Cole could ever want.  We love you Paige!
 
Cole was due to have his monthly iv chemo at hospital tomorrow but as it is his birthday he will be going in on Tuesday instead.  We didn't want him to be celebrating his birthday in hospital - that just wouldn't be fair!
 

***23/6/2010***

This past Monday Cole went into hospital for his monthly iv chemo, steroids etc.  Kurt went with Cole to hospital and told me that he was extremely proud of Cole as when they accessed the veins, Cole did not even make a sound…no tears….now screaming….no fighting….NOTHING….he held his hand out like the bravest of boys do!  It was also on this day that an ulcer on his tongue was found.  I don’t know how long Cole had this ulcer on his tongue as he never complained.  Cole’s doctor is thankfully extremely thorough and he discovered the ulcer and being so thorough he took a swab and sent it for testing.  The result came back 2 days later and showed positive for herpes virus.  Generally these ulcers make eating quite painful and could cause high temperatures.  If this is not treated with a course of acyclovir (anti-viral meds) it could create many sores in the mouth and worst case scenario it could also leak into the bloodstream and brain causing encephalitis or meningitis.  So no chances were taken and he went onto more meds.  This past week Cole took 13 tables per day – this included his daily chemo tablet, 9 steroid tables & 3 antiviral tablets!  Cole did not complain – not even once!  Oh, how we love him.
 
In fact I was very concerned about him being on steroids this past week as my cousin got married on Saturday and Cole was the page boy.  I had this vision in my mind him walking down the aisle and suddenly deciding he didn’t want to do this anymore…rings flying to one side and him going in the other direction.  Not only was I worried about a possible steroid reaction, I was also worried that he wouldn’t want to walk in front of all the people.  I have been very worried about how he would cope socially with others especially since he has had to be isolated from people.  It turned out that he in fact was in a brilliant mood and walked down the aisle like nothing in the world mattered.  Silly me was so close to tears…..my little boy’s social skills are slowly coming back.  He’s going to be ok.  Hopefully by the next update I will be able to send a picture of how handsome he was and how beautiful Paige was as the flower girl.
 
I have also just realized that the 3 week incubation period for the chicken pox that Paige was exposed to has passed.  For those who maybe didn’t see that update - Paige hugged a lady at church who later that day discovered that she had chicken pox.  It would’ve been stressful if Paige did get it as chicken pox is highly dangerous for Cole to contract.
 
We also have Cole’s 4th birthday coming up on the 14th June.  Unfortunately last year we were not able to have a party for him as he wasn’t able to be around any kids but if everything goes well this year we are planning to have one.  He is SO excited.  His birthday present list is growing everyday – from a small 2 wheeler motorbike to a kiddies laptop to a toy helicopter….and so the list goes on.  I am sure he is trying to make up for not having a party last year.  We just feel tremendously blessed to be able to have our little boy with us and to celebrate him being 1 year older.  He truly is an amazing little boy who has taught us so much.



 



 
***5 MAY 2010***
 
The last update that I did was just before Cole was due to have his lumbar puncture, so this update continues from there…..
 
On the Monday morning (19th April) Cole woke up with no temperature so we went ahead and gave the anti-nausea tablet and put the numbing cream on his back (for the lumbar puncture) and on his leg (for the sedation injection) - I did not forget to put the numbing cream on this time.  We had explained to him what was going to happen and he was ok with everything but kept on saying that he wanted to come home and not sleep at the hospital.  We kept on having to assure him that he wasn't going to stay overnight - we couldn't say he wasn't going to sleep as the sedation would make him sleepy and we didn't want to lie about that.
 
When we got to the hospital the doctor said that he will proceed with the lumbar puncture as there was no temperature present.  He had a bit of a cough and runny nose but that wasn't enough for him not to get the lumbar puncture and chemo.  Once sedated, Cole's nose just kept on running - I'm not sure whether somehow the sedation (or something else) thinned out all the mucus and it came pouring out.  His doctor at that point decided to take a nose swab and send it in for testing.  We thought nothing much of it at that stage.  The lumbar puncture and chemo went off with no problems.
 
On the Wednesday (2 days later), Cole's doctor phoned to ask how Cole was and sounded really concerned.  I told him that besides the steroids affecting his moods he was doing well.  He then told me that the tests came back and it indicated that Cole had METAPNEUMOVIRUS.  Apparently this virus causes a bad pneumonia and the symptoms are usually very high temperatures and the kids get really sick with it.  Anyway, the doctor sounded quite surprised that Cole was not sick in any way.  Of course mommy dear got quite concerned and panic set in.  Every time he coughed my heart skipped a beat and the dreaded word 'pneumonia' crept into my mind!  Pneumonia is a deadly thing for Cole to get!  Anyway, later on that week I found out that there were children admitted into hospital who were very sick due to the metapneumovirus that had caused them to get pneumonia!
 
I am not going to say anything else……the fact that Cole has not shown any symptoms besides a runny nose and cough, the fact that this virus has attacked children that immune systems are not compromised in any way (unlike Cole's) …..is NOTHING SHORT OF A MIRACLE.
 
OUR GOD IS A MIRACLE WORKING GOD AND WE SEE IT DAILY ON THIS PATH WE ARE WALKING…..

 
The past couple of weeks have been quite uneventful.  In fact we consider uneventful to be a good thing for us.  Cole however has picked up a bit of a cold this past week and although he has been a happy chappy he’s needed to walk around with a box of tissues (or rather mom has been trailing him with the tissues).  We decided to take him to be checked out by his doctor on Thursday especially since he complained about a sore ear.  The doctor said his ear was slightly red but nothing to be concerned about.  Since then however, Cole has begun coughing, particularly at night time, and spiked a bit of a temperature on Saturday.  Cole hasn’t been sick for such a long time that I almost felt a bit lost as to what to do.  In fact thinking of it, Cole was last hospitalized June last year when he had rotavirus.  As far as I am concerned this is brilliant especially as his immune system is compromised. 
 
We start another cycle tomorrow (Monday 19th April) which begins with the lumbar puncture, iv chemo and a week of steroids.  As long as Cole is not running any temperatures I am sure they will continue with treatment.  At the beginning of a cycle chest x-rays are taken – this was done on Thursday when we saw the doctor and all is well.  They also did a full blood count as well as a count indicating the levels of electrolytes.  Everything was in the normal range except for his carbon dioxide which was slightly low – doctor is not concerned though.
 
Paige is doing well and happy to be back at school after the holidays.  We are also a bit concerned as today Paige had given a lady at church a big hug who later discovered spots – she then went to the doctor who confirmed she has chickenpox!  Paige has been vaccinated against chickenpox but that is not to say she wont get it.  Chickenpox is one of the worst things that Cole can get and unfortunately Cole hadn’t got his chickenpox vaccination before he was diagnosed.  He is unable to be vaccinated whilst on chemo and in fact will probably have to be revaccinated for everything about 6 months after treatment finishes.  So anyway, here’s holding thumbs and praying Paige doesn’t get chickenpox.




***18 APRIL 2010***



 

***6 APRIL 2010***
 
It has taken a while for this update to be sent out merely because it is such a sad one! In the past year and a half we have seen 3 children (2 with leukemia and 1 with lymphoma) pass away. Two weeks ago a little 10 year old boy who was getting treatment with Cole passed away. He also had leukemia (diagnosed before Cole) and he relapsed before Christmas. He was immediately sent back to Cape Town to get him back into remission and to try and find a bone marrow donor. Unfortunately there was no match for him and was basically sent home for his last days. I believe he went through a lot of pain and was on morphine to help when the pain got unbearable. This little boy was only 10 years old with the most beautiful smile and dimples. He always put on a smile especially when Cole was around. He showed Cole how the big brave boys do it! The death of an oncology child always brings us back down to the reality of this awful disease. We take it day by day and because Cole has done amazingly well, we often tend to forget that he was diagnosed with cancer. Please can I respectfully ask each and everyone to continue praying for Cole that he will NEVER relapse and more importantly that he will grow to be a big, strong, and HEALTHY man one day!! Things can change so quickly with this disease so please continue to lift us up in prayer - ESPECIALLY Cole. He deserves to enjoy life to the fullest and be a kid instead of dealing with things far beyond his years. Cole has suffered enough in his short life on earth, he's had his fair share of pain!!

Ok, now that I have got all that said I feel quite emotional. Life is not fair especially when it is your child's life at stake!!! Breathe in….breathe out….in……out!!!

I also have the urge to encourage each and everyone to register to be a bone marrow donor. The chance of finding a matching donor is just 1 in 100 000! Siblings have a 25% chance of being a match - in our case, Paige is not a match should Cole ever need a transplant! There are many kids (and adults) out there that are waiting for a matching donor and who knows perhaps you're the match and can save their life. There is no greater achievement than to save a life, especially that of a child - at least that's my opinion. Those of you who are seriously interested, have a look at this website and it will give you all the info you need http://www.sunflowerfund.org.za/Donor For those of you who do not have internet access I have attached a document that will provide everything you need to know.

The Cansa Relay for Life went off well. Cole led the survivors around the field when doing the survivors lap. He thoroughly enjoyed it and thought he was just the man! Paige and Cole stayed awake until 4am in the morning doing many many (running) laps around the field - I have no idea where they get their energy from. They had an absolute ball and of course kept us on our toes. I eventually decided to take them home thinking they would fall asleep in the car - to my surprise they both told me that they are going to play when they got home - oh boy did I object to that! Cole woke up at 6.30am and told me that it is wake up time as the sun was shining - I of course chased him back to bed as there was no way I could even open my eyes at that time (I need my sleep). All in all it was a good night and we felt extremely privileged to have Cole with us and celebrate the fact that he has come this far!

 
Paige painting Cole's face
Paige painting Cole's face
Cole in his motorbike gear
Cole in his motorbike gear
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