Why did the insulin die in my pancreas?

When I was younger than Lance, there was a great Australian television icon.

Norm.

Norm, the lovable, lazy, beer-swilling, tv watching character I grew up with.

Norm was the face of a collection of advertisements called, Life. Be In It. Despite his portly gut, he encouraged us to go out and play a game of volleyball, cricket or go fo a swim.To make the most out of life. He even told us to “slip on a shirt, slop on sunscreen and slap on a hat.” People started to realise that they didn’t want to be a “Norm”, complete with beer belly and staggered gait. It made people start to think about how much alcohol we, as a nation were consuming, what types of food we were eating and whether we were socialising enough through exercise.

Suddenly, Norm disappeared from our television screens.

Ironically, twenty-five years later, Norm is celebrating his TV debut.

Earlier this year, deplorable figures shot shockwaves throughout the country. Nine million Australians are overweight or obese. This takes the chocolate creamcake!! We beat the supersized Americans for the number ONE position as the most overweight country in the world. Despite the images depicted in Australia of Americans adoring junk food, for our little continent to whoop the pants off America, that’s quite a feat, when you consider the vast differences in population!!!

Australians All Let's Pass The Sauce...

What a National Disgrace!

The Fat of the Land!

Type 2 Diabetes numbers are soaring, hospital beds are filling, enlarged hearts are beating to their full capacity. Parents have no idea that by grabbing fast food on their way home from work, with kids in tow, that they are educating their children with their same, lazy messages and attitudes about food!!

Thank goodness for the likes of Jamie Oliver and Nigella Lawson, who have made home cooked, healthy choice meals appealing and popular to younger men and women. Growing your own vegetable garden is something that many people now enjoy doing.

 Regardless, we are still a pack of NORMS!!!

It’s devastating!

The most horrific part of it all is that children who are Lance’s age are being diagnosed with Type 2 Diabetes EVERYDAY. It’s then a tired, frazzled parent like me, who feels emotive enough to write a Letter to the Editor, and explain that my son had no say in his diagnosis, but Muskstick Sally has probably been fed fast foods all her life, therefore, her body is calling out for more insulin to cover her increasing girth. Damn you, PARENTS!!!

If we are still Number 1 next year,  we are officially relocating to Tokyo.

I’m sure the D word isn’t mentioned as much over there.

A few newly diagnosed families have written to me lately, asking what is the Ultimate Diabetes Survival Kit.

I have two versions-one for everyday trekking about town, and the other, for overnight visits or holidays. 

However, I will concentrate on what I take around with me on a day-to-day basis.

Basically, it’s IMPERATIVE to never leave the house without some form of confectionery or soft drink.

Hypo’s love an audience, so the best way to combat them is to have a range of easily consumed soft lollies, or your child’s favourite sugary drink. (Poppers are ideal, but again, it’s up to individual choice.) If your child becomes so hypo that they refuse to eat, drink or cooperate, you can buy tubes of condensed milk and tubes of icing in a variety of colours from the supermarket. Rubbed into the gums, they will absorb into the bloodstream quickly, hopefully quickly enough that a popper won’t be thrown back at you in disgust. (The danger here is choking. If your child is really upset, and crying and thrashing, DO NOT attempt to put anything into their mouths. Resorting to using a Glucagon Kit is a far more sensible idea, and you KNOW it’s going to work.)

But, first things first.

You are going to need a backpack with lots of different pockets. Of course, it’s up to you entirely what design, shape or colour you select, but it’s vital to choose something that isn’t easily misplaced in a hurry. Have an attachment to a zipper with your name and contact details that are easily legible.

The Essentials.

Glucometer-fully stocked with strips,extra strips, lancets and a spare set of batteries.

A spare lancet device is also handy-the number of pens that have broken in a crisis…it feels sometimes as if Diabetes is giving me a test to see if I break down due to stress.

A container with your insulins inside it; if you are injecting, you’ll know what apparatus to bring with you. It’s great if your insulin doesn’t get too overheated, hence keeping it in an air tight container. Carry a small sharps container to dispense of any used “sharps.” A few alcoholic swabs never go astray, either.

Cans of soda, packets of lollies and other Hypo treatments that are favoured, as well as bendy straws. It’s amazing how a sugar deprived brain has no idea to send a message to the mouth, telling it how to drink out of a can or bottle!! Lucozade is also fantastic, as it has extra glucose than standard soft drink, and a lid, in case your child tells you to get knicked. Keep all of these in a clip seal bag.

GLUCAGON Kit. Yeah, I know I’m annoying with my ranting about glucagon. It’s just that it has literally saved my son’s life, when he has been too uncooperative to eat or drink. Get a prescription from your GP and have it filled immediately.  If an ambo officer sees the “orange box,” they’ll know exactly what they are dealing with, too!!

Throw in a packet of glucose tablets. If your child is displaying symptoms in a queue, it’s great to be able to pulverize them into the earth, (the symptoms, not the child…) by allowing a burst of glucose to keep them safe until you get out.

It’s also fantastic to get an ID card made up, stating that your child has Type 1 Diabetes, or any other allergies or ilnesses. An Australian company, Diabete-Ezy,make these cards-all you need is a passport photo, and list  whom your child’s next-of-kin is. Elissa, the Founder of Diabete-Ezy does the rest!

It’s also good to keep a list of your GP, your Endo and their contact numbers, your last AIC result and what insulins you are taking, plus your daily dosages.

Along the way, I have also learnt to include Children’s Panadol, in case your child gets a pesky post hypo headache. A bottle of water is a must, in case blood sugar levels get cheeky and leave you stuck with nothing but a bag of sugar, and also a few bandaids of all different sizes. Lance has a habit of crashing into a fixture in a store when extremely low, and leaving a generous sized portion of skin behind…

If your child has had an attack, whether it be hypo or hyper whilst you are away from home, and you are concerned about not being close to them, include enough change in a container for a taxi to the nearest doctor, hospital or home. Just in case your mobile runs out of battery, keep a berocca bottle full of coins to make calls to people who can help you out.

A pack of handwipes are also a great idea, in case Panadol gets spat in your face, or in some cases, a really bad hypo can cause an unexpected upchuck. A change of clothes is also a great idea; if it is warm weather, still include a jacket, as sometimes kids’ can feel cold after a hypo.

Some muesli bars or fruit bars are helpful if your child has safely recovered from a hypo. They will need something that will take lower to burn-muesli bars, although riddled with sugar, are ideal for keeping blood sugar stable until you get into your safe environment.

This is a little far-fetched, but I still do it anyway…

If you are in a shopping centre, a library, a cafe-just about anywhere, don’t be phased if you have a managerial looking person approach you and question why you have syringes or vials of “drugs”  etc. I have been accused too many times to count of giving Lance “drugs.” Inform the staff member of the situation, if they still are giving you ‘tude, inform them that you are going to report them and their workplace to the Human Rights and Equal Opportunities Commission in regards to blatant discrimination. Look up the number in your state/country and watch how quickly they back off. An asthmatic wouldn’t get looked down upon for using their inhaler now, would they?

Your NDSS Card, Diabetes Australia Membership card, and your child’s “Disability Card” never go astray either.

Well, that would have to be close to the ULTIMATE hypo kit, However, if any other brilliant, genious mother/father/carer has something not on my list, I’d love to add it on!!

“If it doesn’t run in your family, then how did your son get Type 1 Diabetes?”

I get asked this question SO often, that I want to get some freaky tattoo on my forehead and grow a unicorn horn so that people will be afraid to approach me.

In all seriousness, it appears like Diabetes Australia have been busy little bees, doing lots of research about the escillating rates of Type 1 Diabetes, and even looking at some environmental causes as to why children in particular are more vulnerable to developing the condition.

It seems that in the time since Lance was diagnosed, 2 more Australian children are diagnosed everyday. 6000 new cases of Type 1 Diabetes have been diagnosed between 2000-2006.

Scientists have stopped skitting and scatting and are now acknowledging that there are environmental factors that cause Type 1 Diabetes.

They are questioning the introduction of cow’s milk over breastfeeding, and a lack of Vitamin D during pregnancy as possible causes for the flareup in diagnoses. (Personally, I say a big fat phooey to these suggestions, as Lance was still being breastfed when he was diagnosed, and I walked almost EVERYWHERE in Brisbane (notorious for its blistering heat) when I was pregnant. I feel confident that I had plentiful stocks of Vitamin D.

However, I feel it’s really important to report any new statistics or research that is happening in Australia. Despite our little nation being so far away from where other promising investigations are happening, I am actually very proud of the work that JDRF and Diabetes Australia does to fund the best possible research and trials. So with that, I bring you the latest news.

From 2000-2006, 6000 children had newly acquired Type 1 Diabetes. One of those 6000 children is Lance, who was dignosed in 2002. These stats show that IDDM is on the rise 3-and-a-half percent every year.

Australia has the sixth largest incidence of Type 1 Diabetes in the world. Tasmania has the largest percentage per 100 000 of daily diagnoses in childen under 14,  which was much higher that New South Wales, Queensland, or the Northern Territory-the vicinity with the least amount of daily diagnoses.

Finland, Norway and Sweden have the highest incidences of Type 1 Diabetes in children in the world.

(So, what’s going on in Scandanavia? Three gorgeous, first world countries have the highest percentage of the most common childhood chronic disease on the planet. Hmm.)  

In the year 2000, 19 out of 100 000 children were diagnosed with Type 1 Diabetes. In 2006, the number of diagnoses had increased to 23 out of 100 000 children.

 In this study, it was also apparent that there were almost 9000 new cases in people 15 or over, with males twice as likely than females to develop the disease.

Pleasingly, the Australian Institute of Health and Welfare also acknowledged in their report that young adults aren’t immune to Type 1 Diabetes. They publically announced that contrary to popular belief, it’s not all about young children anymore and that adults of all ages are diagnosed on a daily basis.

The President of Diabetes Australia, Dr Gary Deed said, “There obviously therefore must be some environmental factors driving this increase because on average the blend of Australians and the genetic type of Australians hasn’t changed dramatically over the last five years.”

Dr Deed also confirmed that those who had autoimmune conditions such as coeliac disease, thyroid diseases and rheumatoid arthritis were more susceptible to having Type 1 diabetes.

“Certain viruses in a susceptible individual may cause the eruption of autoimmunity to the pancreas and thus causing Type 1 diabetes,” he said.

There is also a current investigation into whether there was a link between Coxfackie viruses, which can cause cold-like symptoms, and Type 1 Diabetes.

“Early dietary exposure to forms of cows milk have been also studied and that research is ongoing,” Dr Deed said.

Dr Deed said to decrease their child’s risk of having Type 1 diabetes, mothers should ensure they have enough Vitamin D during pregnancy and breastfeed. ( I feel it’s a little premature to be making calls like this; sure, research is underway, but nothing is proven by any means. Hey, listen to Dr Deed over me however. I’m sure he’s not the President of Diabetes Australia because his body shape does justice to a Barnaby Bee costume!)

Barnaby Bee-The Mascot Of Diabetes Australia. Cute!

So there you have it. That’s the news about how Type 1 Diabetes in Australia, and what investigations and research are currently underway in an attempt irradicate it from the Medical Dictionary permanently.

Ever since Lance and I have lived in our neighbourhood, we have paid occasional visits to a Chinese Takeaway restaurant that is infamous for their traditional dishes made to order. They make a delectable chicken-and- vegetable-stirfry that we both love.

Lance, being the out and proud diabetic and media star, quickly introduced himself to the ladies who prepare the food.

Being the small world that it is, we discovered that these ladies, who are sisters, have a brother with Type 1 Diabetes.

Lance was mesmerised. He barraged them with questions.

“What sort of insulin does he take?”

“How many shots a day is he having?”

“Does he cheat and eat bad foods?”

“Can I visit him?”

These ladies were enchanted by such a little boy knowing so much about the condition, when he couldn’t even see over the countertop yet.

Over the years, we have bumped into each other.  Lance would immediately ask, “How’s your brother doing?”

(The Brother was 30 when diagnosed with Type 1 Diabetes, with no family history of Type 1 or 2. He had reacted terribly to the news that he would be on insulin for the rest of his life, and went on huge weekend benders that consisted of lots of beer, plenty of fast food, and the occasional insulin shot, when he felt bad enough to have one.)

The Sisters’ would reply, “Oh, he’s not too good at the moment, Lance. He hasn’t been looking after himself very well.”

Lance would nod his head, and remain silent. After a moment, he would say, “Well, make sure you say a big hello from me to him! And tell him to have an apple instead of a pie!”

Not long after, I managed to escape to the shops, Lance-free for 5 minutes. Again, I met one of the sisters. Her forehead crinkled and her eyes watered up when she saw me. I immediately feared the worst.

“Brian has lost his eyesight. He’s completely blind now. He’s having his right foot amputated next week, and the Blue Nurses are caring for him everyday, now.”

There we stood, two women, clutching hands. I was aware of the rest of the world busily moving forward around us.  I then thought of Brian, unable to see, unable to walk, moving backwards into a world of darkness and fear.

I squeezed her hands as tightly as I could, just in case I couldn’t deliver the heartbreak I felt with my voice. She tossed her head back, and blinked away her tears.

“Anyway, he still has us. We’ll never give up on him. We visit him everyday and read him the paper, and make sure he’s got all of his insulin and syringes.”

I remember going home and feeling nauseated by the news. This man was a total stranger, however, I was staggered by how deeply his horrific news had affected me.

Almost a year passed.

 I had finished work late, Lance was ravenous, so we both decided to visit The Sisters’ at the Chinese Restaurant. Lance and his dog stood outside the restaurant, whilst I collected our meals.

As usual, they both greeted me with a big smile. The waved to Lance, and commented on how tall and healthy he looked.

I paid them, and as I was handed my change, I asked the same question that Lance had been asking for years.

“How’s your brother doing?”

Silence.

I froze. I knew that silence.

I flung my head around to check Lance wasn’t watching. He was busy urging Chino to perform his reportoire of tricks.

I looked into their eyes, searching for answers.

“I’m sorry, love.  Brian passed away a day after New Years Day this year. He couldn’t handle being so dependent on everyone. He ended up in a wheelchair, and had toes on his other foot removed, and he was in terrible pain. He’s better off this way. He was so depressed and angry. You wouldn’t want your worst enemy to be in the state he was in.”

Tears streamed down my face. They urged me with their eyes not to break down.

“He’s in peace now, love. Now, don’t you worry about this happening to your little mate. He’s as safe as houses as long as he’s got you.”

The other sister, wiping away tears, staring straight ahead said, “The doctors’ all said that with the amount of insulin he gave himself that he would have gone very quickly and wouldn’t have suffered in the slightest.”

Suicide. Diabetes Related Suicide.

He was 41 years old.

Now you can walk, now you can see...

This post is dedicated to his memory, and to The Sisters’, who fought all the way to the bittersweet end alongside him.

You know..if Type 1 Diabetes wasn’t a condition with had so much visual imagery attached to it, I wouldn’t tell a soul that Lance has lived with it for almost his entire life.

(Of course, excluding teachers and the people that NEED to know.)

Lance is very vocal and extraverted about initating conversations with strangers we come across regarding the fact that he has Type 1 Diabetes.  He shows not one ounce of pity or sadness that he has the condition; I think he actually enjoys getting on his soapbox and making people aware of what people with Type 1 go through. ( I guess he spends way too much time with me….)

Over the years, I have politely nodded and vehemently agreed that there are far worse conditions than Type 1 Diabetes. I have had “At least he doesn’t have cancer..” thrown at me too many times to  count, and yes, I am so, so grateful that Lance doesn’t have cancer.

“Diabetes? Oh who DOESN’T have diabetes these days!!!”

“Oh my neighbour’s daughter has Type 1, and she does ballet, hip hop dancing, Drama, plays the oboe and is training to become an acrobat so that she can join the circus!! Diabetes doesn’t stop her at all!!” (Ok, got a bit carried away there, she just did the dancing..) And yes, I am very aware that kids’ with Type 1 Diabetes can have very full, normal lives.

“You know, we sponsor a child in Africa who is an orphan. Without us, she would have died with starvation. Look at you with your rosy cheeks! Diabetes is nothing to complain about, mate.” (He wasn’t complaining…but now that you mention it, DKA is a nasty, fatal condition associated with Diabetes; the body begins to cannibalize itself if not enough insulin in given. This often happens when a person with diabetes becomes ill and can’t eat, therefore making it a guessing game regarding how much insulin to dispense.)

“Well there doesn’t look like there’s anything wrong with you anyway young fella! You could be a halfback in a football team! Don’t you worry about Dia-a-bloody-betes.” (Hmm. No COMMENT THERE.)

“Ooh, so that means that he’ll grow out of that. My aunt did at his age. She had it since she was a baby, and then when she hit puberty, she stopped her tablets!” (                              )

“You should take him for a walk through the kids’ ward at the hospital. Then he would know what ’sick’ really meant.” (GRRRRRRRRRRRRRRR, he knows the paediatric ward very well thank you very much..)

“Well, you know, I have arthritis, and somedays, I can’t get out of bed. I cry in pain and I have to be really tough mentally to get up and keep going.” (Getting my drift?)

“Well mate. You’ve got two good legs, two good arms. Nothin’ wrong with ya. My old man’s got kidney failure. You haven’t seen sick until you’ve seen how crook he is.” (Limbs intact, check. Pancreas functioning? Nup. No life on Planet Pancreas. Kidneys? Well..they are starting to feel the strain, too.)

“Ohh you poor thing. Well, I guess you just have to look at how lucky you are to still be alive. Some kids die when they are born, for no reason. That is the biggest horror of all.” 

“Oh there is a cure for that now! I saw it on the news! It’s the kids with Cystic Fybrosis I feel sorry for..they are the ones that have to battle all their lives…” (ARRRGGGH!)

Okay. I have to get one thing straight.

ANY CHILD who has a life-threatening condition is in a cruel and horrible predicament. It’s just not right that kids’ are born and know suffering before they have had time to live. I have met some truly breathtaking children from Lance’s times in hospital who will tell you all about their sickness with a huge smile on their face, and then proceed to show you how they can do a new puzzle, or tell you how they got to watch the footie with their Dad. 

However. Adults. The Experts.

Lance may have rosy cheeks, however, if I skipped his insulin dosage the same day that comment was made, he would be a pale, clammy, very sick little boym thrashing around with agonising stomach cramps by midnight.

Any child in Africa who receives sponsorship is truly blessed. People who sponsor a child in Africa are truly inspirational. However, Lance is forced to face his own mortality everytime he is severely hypo, and he fights against having a handful of lollies, or some Juice, because his brain is so starved of glucose that his thought processes become completely irrational.

To be crippled in bed with arthritis must be a terrible afffliction. I guess you could compare the feeling of being ”bedridden”  to a week of high blood sugars, that leave a person with Diabetes weak, achy, listless and thoroughly drained.

What I would really like to say, is that cancer, and cystic fybrosis, and leukaemia, and muscular dystrophy are all terrible, devastating childhood illnesses. I would like to include Type 1 Diabetes to that list. It may not be physically detectable like some other conditions, and it has a whole different range of symptoms and complications. A child with Type 1 Diabetes who is deprived of their insulin will deteriorate rapidly. They WILL die. No ifs, no buts.

It just makes me want to scream out at the top of my lungs, ”IT’S NOT A COMPETITION!!!!!!!!!!!!!!!!!!”

I understand that many people associate diabetes with their parents or grandparents.

I understand that people are probably trying to put a positive spin on Lance’s public revelations.

I understand that there are many horrible illnesses that prey on our children.

However, i refuse to say that Type 1 Diabetes is not a serious, life-threatening disease, and that Lance is lucky he has it in comparison to any other affliction…I will NEVER say that he is lucky to have this over cancer. It’s just plain stupidity to compare one illness to another. Any parent who has nursed their child through DKA after a vomiting virus, or has seen their child recover from a seizure as a result of severe hypoglycaemia will understand what I mean. When Diabetes gets mad, it gets ugly. Just like the rest of the illnesses and conditions mentioned in this post.

Each person has their own personal set of circumstances and coping mechanisms.They SHOULD NOT BE MADE TO FEEL GUILTY FOR GRIEVING ABOUT THEIR CHILD’S DIABETES, because it’s a “treatable” condition. That doesn’t mean that there isn’t a lot of work and effort associated each and every day with keeping your child vertical. Generalisations made about Type 1 Diabetes are so hurtful. I try so hard to continue creating awareness each and every day, but it really feels like I’m wading in quicksand.

It’s not fair to make kids’ with Type 1 diabetes feel like their very needy, unpredictable condition isn’t worth talking about, or to completely disregard what they go through. 

That’s just me on my soapbox.

I was speaking to my brother-in-law, Janek, when I felt “that” feeling. If I was the actress on a movie set, my hair would have started to stir and billow around my face, the lights would have been flickering, complete with bats squealing and their wings flapping against my window. When it comes to Lance and his levels, I have learnt to just ” know.” I could be M. Night Shyamalan’s muse…

I can be totally engrossed in something that doesn’t concern Lance-once he is asleep and “safe” I tend to unwind a lot-yet all of a sudden I can experience this sensation of unsettling dread. My heart starts to pound and my saliva stores completely dry up. I’ve tried so many times to convince myself not to act on it, but frighteningly enough, I have a decent success rate.

Whilst I sat on the edge of the bed watching the countdown, I discovered that I was holding my breath. Sure enough, Lance’s breathing was very shallow.

Lance was 9.4mmol/L at 9.30pm.

I reached for the glucometer, told Janek that I would “Be right back” and went to perform a test.

3.2mmol/L.

This is getting beyond a joke…

He’d had a fabulous dinner, carbohydrates galore, Low GI recipe..I was content and happy that we would have a troublefree night. I jinxed it by assuming everything would be okay.

I sat a drowsy and wonky Lance up in his bed, and told him he needed to drink for me. It’s pointless telling him that he is low or hypo, because he will simply roll over and tell me that he isn’t. If I say it’s “for me”..he will oblige..just.

He sucked down an apple juice.

He has now shot up to 10.4mmol/L.

That “feeling” has conveniently disappeared now.

If this pump wasn’t a reality, I really don’t know what I’d do. All of the extra injections, extra fingerpricks…even though I’m not receiving them, these constant ammendments and re-checking are exhausting, and emotionally draining.

The blessing of it all is that Lance remembers NOTHING the next morning.

As appreciative as I am for the marvel that is insulin, and the fact that I have a fridge full of it, I am fighting a mammoth battle to help Lance’s blood sugar levels remain out of the 20mmol/L zone. It’s associated with his intense growth spurt, and according to his endo, I have to fight “tooth and nail” to keep his control as tight as possible. It’s virtually impossible at this point in time to achieve this!!!

The Pump. It HAS to help.

After years of reading success stories by the hundreds about people with Type 1 converting to insulin pump therapy, I am so delighted to announce that finally, it’s Lance’s turn.

After our last round of blood tests, I decided that I can’t compete with mimicking a functioning pancreas any longer. Therefore, with an exchange of a few sentences each, our endocrinologist and I decided that it was a smart move to pass the job over to the Medtronic Paradigm Real Time Insulin Pump.

It took only a few phone calls before just like that, Lance found himself booked into hospital. His pump is waiting for him there. We have an appointment with a dietician, then plan to check into a lush hotel, and casually meander over to the hospital the following day.

However, it seems that Lance maybe a not quite as eager as I thought he might be.

I could instantly tell that something was bothering him late last week. Everytime I have mentioned the pump, he will either change the subject, or just switch off.

Over the weekend, I used some reverse psychology to get to the root of the problem.

“You know what, Lance? I’m a bit worried that you aren’t going to be able to have comfortable sleeps when you have the pump…do you think it will be annoying?” I asked, as innocently as possible.

“OH Yes, MUM! I have been worried about the exact same thing! I am scared that it will get tangled up and it will get ripped out and I will bleed all over the sheets!” he blurted out. He looked SO relieved to finally have heard himself say it.

“Well, I remember when you wrote to Brendon, and talked to him about the pump. He said that it isn’t uncomfortable at all. He would know, because he has had his pump for a long time now.” I said, grabbing my laptop to find Brendon’s email. (Brendon is Lance’s penpal who lives in America.)

“Oh yeah. That’s right. I forgot about that. What if the pumps in America are different to the ones in Australia?”

“Your pump is made in America, so it will be just like Brendon’s.” I could tell that Lance was feeling a little  better.

“Mum?”

“Yes?”

“Is it okay if we don’t speak about the pump for a little while? I’m really over hearing about it. I just hope these nurses and doctors know what they are doing..” he said, complete with furrowed brow.

I held in stifled laughter, and assured him that that’s their job; to help people with their insulin pumps when they come to hospital, and make them feel safe enough so that they feel confident enough to return home.

I can totally understand where his worries lie.

From a lifetime of injections, to becoming attached to a machine that suddenly takes the place of the insulin pens we know so well, I put myself in Lance’s shoes, and I can understand that suddenly stopping insulin, and handing complete control over to a machine would be very daunting and frightening indeed.  

Just because he comes across like a knowlegable and together 30 year old, doesn’t mean that he doesn’t have seven year old fears.

He is catching up with his good friend whom he travelled to Kids in the House with this week. She has been a pumper for almost four years, so she is an expert-and Lance adores her. I am hoping that talking with her will allay some of his fears. She is going to show him her site and pump, and explain how she doesn’t let it control her every minute.

When Lance was diagnosed, a handful of people had insulin pumps. Now, we are classified as old schoolers, as we are still administering insulin via injection.

He also hit me with another pearler tonight.

“Mum, HOW on earth am I supposed to know how many carbohydrates are in 5 grapes? Or even my dinner? I’m not going to be able to tell my pump what to do properly, because I don’t know about carboydrates properly yet..”

My poor precious boy.

I scooped him up in my arms, and told him that he needn’t be worrying about carbohydrates just yet. I made sure he understood that it would still be my job to make sure the right amounts were entered into his pump. I assured him that I knew that with his sharp mind, that it wouldn’t take long before he remembered and wanted to do it all himself. He half-smiled; he has an extraordinary memory.

It’s so easy to think that you are giving your child the most amazing gift in the world by starting them on insulin pump therapy, however, it did make me stop and think that little minds do tick over, and it’s very important that they have some pre-pump advice, from a fellow pumper, or even a child psychologist. (Most good diabetes clinics have one on staff.)

For now, I’m making sure he gets plenty of TLC and lots of hugs and extra love. (If that is at all possible!)

I realise now I probably did overdo the pre-pump hoopla.

Once he gets used to the idea, it is going to take ME a while to learning how to exist in the world again. We have both become institutionalised by living a life based around numerous daily injections.

Anyway, his steel grey pump is waiting for him with his name on it.  I will be in raptures when the day arrives when he realises that he can be “just Lance”…. for the first time that he can remember.

A lot of progress has been made since Lance was diagnosed 6 years ago.

I still recall an early conversation with our endocrinologist. I very innocently asked about the possibility of a cure.

He inhaled slightly, and said, “Ten years ago, I would have said “About ten years time,” but now, I am telling you, that you will have to wait at least another ten. At least.”

I was absolutely gutted.

It was probably the most horrible sentence I had ever heard, besides, “Your son has diabetes, the insulin dependent type.”

It appears that a lot of people can’t see the reasoning behind advocates like Lance and me who continue making the effort to fundraise. It is possibly the most fantastic feeling in the world to see a container full of money that we have raised that we know will benefit our charity. The most fantastic sight is watching Lance carry it into the bank, with a grin from ear to ear. By the time he leaves, and the money is safely deposited, his story has been told in great depth to the tellers. Some have to grab a crumpled Kleenex, and others have been known to contribute an extra $20 dollars, just because Lance is who he is.

However….

“Let the government fund the charities! They’ve got billions to give to Health!!!”

“Do you really think your paltry few thousand dollars is going to make a difference?”

“Don’t torment yourself and spend the time doing something you like and enjoy, rather than begging for money.”

“In some ways, you are exploiting your son by taking advantage of his “cuteness”. 

“People will only donate if you drag Lance along with you.”

All of the above are common remarks that I hear whenever I hit the pavement with Lance, in an attempt to collect funds for JDRF Australia-an organsation that ensures that all monies raised go directly into the laboratories.

However, it seems that I have had the last laugh.

Lance got a letter addressed to him on Friday. He opened it, bursting with pride that a letter had arrived in our mailbox addressed to him, and began to read it quietly to himself. Five minutes passed; my curiosity was suddenly pricked, as I’m not accustomed to silence living with Lance.

Then….

“MUM!!!!” he exclaimed, a few decibels louder than usual, and enough to startle me.

“JDRF have found a cure! Well, kind of a cure!”

I snatched the literature from his hands, my eyes furiously scanning the page.

It wasn’t quite “THE CURE”, but a letter outlining a possible vaccine to prevent Type 1 Diabetes comes a very close second!

Australian Scientists have been working at the DIabetes Vaccine Development Centre for a few years now. Their research indicates that Type 1 Diabetes may be preventable.

At last, the Intranasal Insulin Trial (INIT) is available throughout Australia and New Zealand!!!

Intranasal Insulin Trial -A Possible Vaccine?

Before you get TOO excited…remember, it is a trial.

Therefore, people need to be identified as having a increased risk of developing Type 1 Diabetes. All that is required is a simple bloodtest.

If the results show that you have the antibodies-a marker of the immune attack on beta cells-the test can be offered free of charge to determine your risk of acquiring Type 1 Diabetes in the future.

Before you continue reading, please be aware that the test is only eligible to those who have an immediate family member with type 1 diabetes, (mother, father, sister, brother, aunt, uncle, niece, nephew, half-brother or half-sister.)  (Unfortunately, I don’t fulfill the two requirements to participate in the trial. I have the blood relative with Type 1 Diabetes, but I turned 31 this year.) I would prefer a young sibling of one of Lance’s friends to take my place anyway.

You MUST be aged between 4 and 30 years to participate.

So if you are eligible, how can this trial benefit you?

The trial (INIT II) will determine if an intranasal spray can STOP the immune attack on the beta cells, and PREVENT or DELAY the onset of Type 1 Diabetes!

Participants in the trial are given a nasal spray to use ONCE A DAY FOR A WEEK, THEN ONCE A WEEK FOR A YEAR.

Insulin administered this way acts like a vaccine on the immune tissue in the membrane of the nose. Therefore it is not absorbed into the bloodstream and does not affect blood sugar levels.

INIT II has shown no significant side effects in children and young adults who were positive for antibodies.

YOU COULD HELP PREVENT TYPE 1 DIABETES.

For more information, call 1300 138 712. (Australia)

or visit www.stopdiabetes.com.au

I can’t forget our neighbours in New Zealand..

Call 09 3737599 ext 87897 (Auckland)

03 3640448 (Christchurch)

or visit www.stopdiabetes.co.nz

This trial is an amazing opportunity for those who have a child with Type 1, and who have had silent fears concerning their other children also developing the condition. The antibody test is positive in only 2-3% of relatives of a family member with diabetes. Therefore, if you were tested, you would probably have a negative result.

However, if a positive antibody test came back, it would be the greatest gift you could give to your child and your family, simply by participating in the INIT II trial.

We have the truly amazing and dedicated scientists and researchers to profusely thank for working so tirelessly on this trial. Thanks must also go to the Juvenile Diabetes Research Foundation (JDRF Australia) and the National Health and Medical Research of Australia, who funded this trial through the Diabetes Vaccine Development Centre.

If INIT II proved successful as a Type 1 Diabetes Vaccine, it would be one of the greatest medical advances in my lifetime. I received an email from another mother who received the same information. She asked me if I was sad that INIT II could help so many, but held nothing beneficial for Lance. I quickly responded that not for one second, would I want any child to go through what my son, and all my other young friends with Type 1must endure on a frustrating daily basis.

This is a true blessing, and if Lance had siblings, I would have them tested immediately. Kids so very much deserve to be kids, and knowing how to count carbohydrates before they can master addition confidently is simply nothing short of a tragedy.

I feel proud that our fundraising efforts could have been used to fund this trial. Even if it was used to pay for the DVDC’s lightbulbs and test tubes, it still made a difference. ;) 

Every May in Australia, it is Jelly Baby Month.

I am a JDRF Youth Ambassador, so it is very important for me to put on my t-shirt and lapel badge and fundraise as much as I can.

I was busy with schoolwork this year, so I didn’t have as much time to go out with my Mum and introduce myself. When I introduce myself, I also introduce my Diabetes. I always make sure that people know that I have Type 1 Diabetes, and that it wasn’t my parent’s fault, or my fault that I have this condition.

Mum organised for 3 huge boxes of Jelly Babies to be delivered to our house with Georgina from JDRF in Brisbane. Most people love Jelly Babies, so I was pretty confident that I would sell them all.

We worked, selling Jelly Babies on weekends and on public holidays. Some prople bought ten packets after they found out what kids like me go through. Everyone was very kind. I know this sounds really childish, but I was really disappointed when I discovered that I had only raised $288. My Mum explained that when you are selling items that only cost $2 each, it takes a long time to make a lot of money.

I am very proud that, along with the $288, that I have now raised $6000 for JDRF Australia. This year, I did it all by myself too. Mum just came along to make sure I was safe. I even knew how much change to give people if they didn’t have the correct change.

I have my fingers crossed that JDRF Australia makes 1 million dollars this year: The Tenth Year of the Jelly Baby.

JDRF deserve and appreciate every little bit of money that they receive. They make me feel special for having Type 1 Diabetes. I’m so glad that I can help them from time to time.

After a very trying, emotional and frustrating few weeks, I feel I can finally face reading the words that describe the dilemmas that have occurred since my last post.

Lance has become very accustomed to waking up, and handing over his morning urine sample. We have been collecting urine in the morning even before we get to say “Good Morning.” We then walk it up to the pathology centre, where it gets labelled, and tested.

He’s asked a few questions, but he hasn’t been disturbed by having to urinate into a plastic jar. He mainly wants to know what the doctor is looking for. The doctor is looking for elevated levels of albumin, but I haven’t told him that. He is a little boy with a lot on his mind at the moment.

We have been planning a trip to Sydney for ages now. and because Diabetes always comes first, we have had to postpone it temporarily. My brother and his new partner are dying to see Lance, and my sister and her husband have recently moved state, and I desperately need to see some friendly faces. We cannot go until we have a few more tests done.

I know and share Lance’s Type 1 Diabetes.

I tolerate and swear daily about the limitations of preparing and eating a coeliac diet. Still, I can smile.

I rub Lance’s back and comfort him when his diabetes-related gastric reflux condition flares up. He curls up into a ball and winces due the sharp pains in his stomach that radiate through to his back, and begs me to make him a hot water bottle. Thankfully, his medication has quietened this problem right down, but on occasions, he still deals with high levels of pain and uncomfortablity. It always dies down, and we smile and take a sigh, grateful that another episode is over.

However, after a 7am call from the Pathology Lab, asking me to repeat Lance’s first urine collections, my heart was firmly planted in my throat.

During my absence, I have become accustomed to a new term, known as albuminuria.

A word associated with kidney damage, late stage Diabetes, high blood pressure, cardiovascular disease..

 Not my son. Hasn’t he tolerated enough?

Apparently, every child with Type 1 Diabetes under the care of an endocrinologist or a paediatrician is tested for elevated levels of albumin once every year, especially after they hit the 5 year diagnosis mark. Lance has just had his 6th year blood work done, and his levels came back, elevated, and left our endocrinologist looking very awkward and confused.

I closed my eyes, felt my throat closing up, and blinked away streams of hot tears.

We shook hands, and my son and I walked away from his consultation rooms. Lance had obviously not been affected by phrases such as “kidney damage” and “abmormal levels.” He was more interested in the gluten free cookies we always indulge in after an appointment.

I handed him a ten dollar note, and watched him approach the waitress and ask for his cookies. Is it any wonder that people don’t think that “he doesn’t look sick.” In fact, I was filled with admiration for how tall and lean he has become, how his speech has become highly articulate, and he knows the perfect way to behave as a customer, and may I add, a perfect gentleman. He had bright rosy cheeks, and azure blue beaming from his dancing eyes.

So..after ten days of tests, phone calls, missing test results, repeated tests, unnecessary bloodwork, waiting for up to 2 days for his specialist to return my phone call, practising smiling and looking happy in the mirror so as not to alert Lance that there was a problem, I finally have a diagnosis, and another specialist appointment; it’s more of a, “So..what’s next?” consultation.

I would like to take this opportunity to thank with all my heart, the countless messages, phone calls, comments on my blog from strangers, pick-me-up gifts from friends, fresh flowers delivered to my house and follow up concern for Lance’s wellbeing…the fact that people cared enough to keep Lance in their thoughts means so very much. I haven’t been able to answer the phone or even turn on my computer over the past weeks; I felt that it would only take a kind gesture or a familiar voice to set me off, and I was afraid that if I started crying, I wouldn’t be able to stop. I have had to keep my emotions intact and in control for Lance’s sake; he falls apart if he sees me distressed or upset. He will do practically ANYTHING to stop me from crying. I don’t want him to remember his mother as a chronic emotional wreck when he is older. (That doesn’t mean that the minute he falls asleep each evening, that I’m not sobbing my heart out.) It takes great restraint to keep tears at bay all day long, I can tell you! Then there’s my family. If I even have a faint quiver in my voice, they are immediately petrified that I will become distressed. It hurts them. It hurts me that they think I should keep a stiff upper lip, too.

So that’s the situation. I will keep up to date with Lance’s pending test results. He is happy, and is loving the school holidays at the moment.

Oh yes. To the doctor who suggested “dialysis as a future option”, late on a Friday afternoon, leaving me an absolute zombie for two agonising days…I am considering getting a voodoo doll made that represents you, to use at my leisure. The following Monday, Lance’s specialist soon knocked that thought out of my head, asking me “who on earth told me such a dreadful inaccuracy.” He knows it was you, so maybe you might like to consider your bedside manner when dealing with future clients. That’s if you haven’t been demoted or asked to take permanent leave.

If you haven’t had your child tested for microalbuminuria, and they have been diagnosed for over five years, please suggest that your doctor includes the test along with the 3 monthly A1C request at your next visit. Diabetes has just too many nasty little surprises that you must never assume your child is immune from.

Again, thank you for the love and prayers. It helped so much to know that we were in loved ones’ thoughts.