Why did the insulin die in my pancreas?

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.