The realities in our world

Right now New Zealand is having an outbreak of measles.

I'm not looking for a debate on the matter because quite frankly I'm pro-immunisation and I can't understand why parents would want to put their children's lives at risk by choosing not to immunise their kids against things like measles.

Yes it is true that in a few minor instances there are side-effects from the vaccines, but the risk of developing a severe and at times life-threatening complication from the actual disease is so much bigger. Yes, I've heard people say that the MMR vaccine causes autism. Really? Surely if the drug was responsible then many many more kids would be diagnosed with autism. I've also heard people saying that kids who are vaccinated get cancer. Really? What stats are you basing your statement on? Right now in Bianca's school there are 2 children who are currently receiving treatment for cancer and a third girl who was diagnosed when she was 2, but is completely done with treatment and has been cancer free for a number of years. So then if (as some say) the drug causes cancer, then surely there would have been more than 3 children out of around 380 children at my daughter's school with cancer? I'm fairly certain a large number of these kids are fully immunised. Bianca was also the only child with cancer when she was still going to her daycare and surely if the drug was responsible for cancer, she would not have been the only one at that center with cancer. Surely then if you took all the kids in New Zealand, a much larger number would have had cancer if the drug was responsible for causing it. It seems that these people conveniently forget that there was a time when measles killed a large number of kids and when many more were left with severe complications as a result of getting the disease, but thanks to many parents who have immunised their kids against the disease through the years, they have been able to manage the disease much better. Unfortunately we are now once again entering a time where more and more parents choose not to go the immunisation route and so unfortunately, as a result (thanks parents who choose not to immunise) I think diseases like measles will come back in full force. This is, quite frankly, incredibly scary.

I know most parents will simply say "oh well, what's the worst that can happen?", well the worst that can happen for Bianca (in particular) is that she can die if she got it and it isn't simply a case of "oh well, she got it and now that is done". No, Bianca can get it again and again and again. I pray incredibly hard she won't get it, but unfortunately people who come in contact with measles and are at risk of getting it, will likely spread the disease without even knowing that they are doing so, and so by the time they show symptoms, they have potentially put others' lives at risk. That is the trouble with things like measles.

So when I read that the outbreak has reached Auckland, I emailed Bianca's school and today also emailed Caitlyn's daycare to ask them to please remind parents to notify us immediately if their child gets things like measles or are exposed and at risk of getting it. Hopefully this way Bianca's doctor can find a way to prevent Bianca getting it in the event of an exposure. The thing that scares me most is that, from what I read on another mom's blog (after consultation with their doctor), if an immuno-compromised child gets measles, they can't actually treat it, so they will want to do whatever they can to try and prevent the child from getting it, because oncology kids simply do not have the same bug-fighting ability as other kids. Often when oncology kids get a virus, their neutrophil and white cell counts drop, that means they often have zero ability to fight the infection, it also means their chemo has to be put on hold. All of this is so scary. Yes, we are nearly done with treatment, but then it will take a number of months before Bianca won't be considered immuno-compromised anymore, so right now, scary times for us.

Let me share a story:

We once had a situation where Bianca was in hospital, in isolation and on oxygen for most of the 34 day admission. They tested her for so many things and finally they susptected she was exposed to whooping cough (something parents can usually immunise for). During that time Bianca simply wasn't gaining weight as she should have and got a nose tube put in. That was simply one of the hardest days of my life. We fought so incredibly hard for her not to get a nose tube, but finally we simply had no choice. I can't even begin to describe the complete feeling of failure that I felt. As parents we have to protect our kids against people who are nasty, do nasty things, treat our kids bad, make them feel scared or sad or hurt them in the process. On that day we did not protect Bianca against these people holding her down and forcing this tube down her nose. She fought and screamed and struggled and finally all she could do was cry and she seemed really defeated, but we had no choice. Our doctor warned us at the time that there was a chance we might have to take her to ICU (thankfully that never happened). And then there was the day where she was playing happily and then the next moment had a coughing fit and then suddenly wanted me to clear her bed because she felt tired and she fell fast asleep. At first I wasn't too worried, but then noticed that she was breathing really fast. Turned out she was having a severe broncospasm and needed immediate assistance as she wasn't really very responsive and was having breathing problems. It didn't last long, but it was incredibly scary to suddenly see the room full of nurses and the doctor giving orders. I'm just thankful we were at the hospital because if we were at home when that happened... don't even want to think about it.

And this, unfortunately, is the reality of having a child who is immuno-compromised and exposed to (what we suspect) whooping cough that people can get their children immunised against to prevent their kids getting the illness and spreading it to kids like Bianca. That is the fear we have to deal with when facing things like measles and chicken pox and all these other highly infectious childhood illnesses. The fear that they will have such a huge life-threatening risk if they are exposed.

So parents, if your child is exposed to something like chickenpox, or measles or any other highly infectious disease and you suspect your child might get the disease or your child actually gets the disease, please communicate this to others like the people at your child's school or daycare center or holiday programme or afterschool programme. Whilst the disease itself might end up being really mild for your child, and you might feel relieved to get it out of the way, please keep in mind that others like Bianca might not be in the same "lucky" situation where it will only be mild and be "done with". You might not realise that another child is actually immuno-compromised and at a much higher risk should they be exposed. And if you are pro-active and communicate these things, then you might just give people like us a chance to prevent our child from getting the disease.

Edited to add: It appears that some think I'm saying parents should inform others of every little cough and minor illness and I just want to say that I most definitely did not include these in my entry, in fact I have not referred to coughs and minor illnesses anywhere in this particular entry.

I am referring to serious childhood illnesses like chickenpox and measles (and whooping cough in my example, this is most definitely not the same as a minor illness and minor cough).

Whilst not all children are immuno-compromised, like Bianca, you might not actually know if a child is or not and you might not know what other things a particular child is dealing with that could put them at higher risk. You also won't know if a child is fully immunised against these diseases or not, and so by the time symptoms appear for a particular child, it is often too late and many others would have potentially been exposed, because these illnesses spread before symptoms appear.

And what if for instance your child is exposed to say rubella because a friend or a sibling got it and you know that there is a chance your child might get it because they were not immunised against it, if your child gets it, your child will usually be infectious before actual symptoms start. Don't you think it would be fair to at least notify the centre of the exposure and possible development of the illness in case your child spreads the disease to somebody who is pregnant (and certainly you won't always know if somebody is pregnant or not)? Don't you think it would be fair to at least give this person the chance to possibly stay away until the risk is mostly over?

In many of these cases, the quicker you can do something to try and prevent it, the more successful it will be and the longer you leave it or if you just sit and wait for symptoms, the more serious it can be. And let's be honest, measles for instance is way way more serious and aggressive than chickenpox - could you honestly say that you know for a fact that all children at your centre received their MMR vaccinations? Whilst it is safe to assume most did, it is also fair to say that some may not have.


Anonymous said...

Well said Lea!!!
I agree wholeheartedly as both a nurse and a mother of a child with naturally low immune system from birth. (thankfully not a cancer kid)
You have a natural way with words that makes them easy to read and comprehend (may not seem it to you).
Thank you for sharing your family's story with the world.
All our love and best wishes for the few remaining days of official treatment.
L, A and T

Anonymous said...

Whoa! You do write incredibly well.

Our childcare centre (in Wellington) has a notice up stating that there is currently a Measles outbreak in Auckland and Christchurch and to be aware of symtoms.

I feel for your situation, however do not fully agree. My children aare both up to date with their immunisations, as I believe this is important.

Reporting every little cough and minor illness to school/daycare etc. is being rather hypocondriacish. As parents, this world is already such a busy place, so why add further fear and unneccesary worry for everyday people. Most children are not immuno-compromised, and are not in your situation.

Best of luck for the rest of your treatment, and avoiding meales and the like...

Lea White said...

Just to clarify Mr / Mrs / Miss Anonymous just above - I never said that parents have to communicate every little cough and minor illness. Please read my entry again, it refers to things like chickenpox and measles.

Anonymous said...

Lea - I agree about notifying day-care centres & schools when your kid (or a family member) has caught something highly infectious or dangerous.

We had friends living with us a few years back & their 1 year old was attending a local day-care while they lived with us.

One day when my husband was dropping of Mr 1 Year Old, he noticed a sign up on the door that some staff & children were suffering from the stomach flu. My husband did not enter the building & took Mr 1 Year Old home with him hoping to avoid catching this highly contagious bug.

But it was too late... apparently the first sign of the stomach flu had been 3 days EARLIER.

I wished that they had put up a notice on the FIRST day rather than the 3rd. Mr 1 Year Old, 2 of his older siblyings, my husband and I ended up catching the bug. I had to take a full week off work to recover as I got hit pretty bad by it.

So, it's not just immuno-compromised children that are at risk, but the whole community!

My work has the rule of: if you're sick, stay home, don't spread the germs.

Here's hoping that you all avoid any of the bugs doing the rounds at present.

Anonymous said...

Hey Lea, just wanted to say that your whooping cough incident sounds really scary and the feeding tube almost broke my heart!
I hope that Bianca will remain healthy throughout the measles outbreak!

Prevent Disease said...

Best of luck for the treatment.

Anonymous said...

Lets hope that "anonymous" just doesn't have to go through what we have been through, with a child who has cancer. Some people have no idea, good on you Lea for making a follow up comment from theirs and setting the record straight.


Anonymous said...

Wow, I too am a mother of a immuno supressed child going through ALL leukaemia treatment. How small minded of the anonymous comment about 'hypocondriacish'. It really makes me angry. I mean whilst I know it would not be possible to report every cold/fever/runny nose, it is now that I make my point that even so these people thankfully do not know what it is like to live in a bubble, screen everyone you meet, avoid all bugs where possible as generally whilst our children are on chemo their neutrophil count (a component of the blood which fights infection) is generally wiped which means that if we didnt act 'hypocondriacish' and even look out for the 'cough and little illnesses' that are out there our children could well end up in hospital with worse case scenario pnemonia just from a 'little cough or little illness'. Sorry that your world is a busy place and I would hate to put you out however some of us are busy too constantly worrying about our next hospital appointment or our next lumbar puncture or our next daily dose of chemo or how our children can try and live some sort of normal life or will our child be cured. Sorry if I seem a little sensitive it just makes me a little annoyed for someone to make an insensitive comment about something they have absolutely no idea about. I read this about the measles and cannot agree with you more, well done it was a pleasure to read. We have just finished chemo after 2 and a half years and wish you all the best for the very end.
Take care

Anonymous said...

You certainly get your thoughts across eloquently and without being offensive, just assertive and educated.
I agree with you 100% being in a cancer family too.
So excited and happy about the end of treatment coming.
Rosemary NY