Looking forward

So, the past week has been “exciting,” with two interesting, life-altering events occurring. I’ll tell you about the first one now, and the other a bit later.

First, I hit the half century mark on March 7^th. We celebrated with a weekend trip to Atimpoku, which was very nice as it always is. The kids swam, we ate great food at Aylos Bay. We saw the twinkling lights over the Akosombo Dam at dusk. Alex caught a fairly large tilapia that got away when the line snapped as we were ready to take it off the hook. All in all, it was a perfect celebration. The only thing not nice was my allergies which were amazingly uncooperative – I was sucking Zyrtec down every 12 hours for 2 days to no avail. But that’s past and (today, at least) I feel great.

I am looking forward to the second half of my life. And yes, I do believe I will live to at least 100!

The other event? Well, nothing quite as monumental as a 50^th birthday, but let’s just say I have the same degree of determination for the future and a great outcome. Now let me get you up to speed so you’ll know what I’m talking about.

Alex got her A1C results back the other day. (FYI, the A1C is the lab test that tells you the average glucose which “clings” to a person’s blood over the previous 2-3 month period, the lower the A1C, the better). Anyway, her A1C was worse (by far) than I expected.

I know. I know. It’s not supposed to be looked at like a report card. But, really, isn’t that something you say when your own child’s A1C is good and you’re trying to make another parent of a CWD feel better? It is a report card. I flunked Pancreatic Lab. Oh, I do great in Pancreatic Theory – A+ all the way. But the lab work is 99.9% of the grade, and there’s no A for effort.

So, yeah, the “life-altering event.” Alex’s latest A1C sucked at 8.5%. Far worse than the 7.5% we got in October. Granted, I think she’s had a growth spurt, and the hormones released during growth spurts generally result in higher blood glucose. She certainly looks taller and she’s gained 5 lbs (finally, she’s only been stuck at 60 lbs. for the past 2 years!).

But growth spurt or not, her numbers have been horrible. At school she doesn’t bolus enough so she’s invariably high between 11:00 am and 3:00 pm. We play catch-up boluses because she eats something and forgets to tell me she ate something. Or she refuses to eat the food we just bolused her for, usually resulting in a low followed by a high for overcompensating. As I said, her numbers have been horrible.

Oh, you noticed that there seems to be quite a few months between our A1C tests, huh? Yeah, you would. That’s ‘cause I’m avoiding Alex’s doctor. I kept hoping that I’d get her numbers more in line and that the A1C wouldn’t be this bad. Didn’t work.

Don’t get me wrong, I’ve said it before; Dr. Renner is a lovely woman. She won’t rant and rave or chastise me or make me feel worse than I already do. She’ll likely ask Alex is there’s anything she’s done (or didn’t do) that could have given this result. Alex will smile sweetly and then lie in her face and tell her no. To be honest, Alex could be a lot less difficult and a lot less demanding.

And I guess I could do a lot more demanding and be a lot less accommodating. And there it is. I’ve said it. The problem. I’m the problem. I do not crack down on Alex. I took for face value the words “she can eat anything she wants, as long as she has insulin to cover it.”

The problem is Alex does eat whatever she wants. She also drinks whatever she wants, which on too many days is a beverage called “malt,” a non-alcoholic drink that has 45 carbs in a single 12 oz bottle. If I send her to the store, she invariably comes back with sweets – “Oh, I’ll just take 1 unit (or 2 or 3 or whatever) for these,” and then she practically inhales them. A fight or a tantrum or some horrible scene ensues if I take them away. By the time that occurs, I’m too exhausted and stressed out to fight back and I give in. Bad mommy, I know.

You have to understand something, with Alex, there’s no such thing as moderation. But that’s all about to change, and Alex knows it. We had a little discussion, she and I and her dad, and this is what we’ve all decided.

New rules:

• Alex will be limited to one malt or soft drink over the weekend only.
• Sweets will be considered a “treat” and I will dole them out as I see fit (and if she brings one back from the store, it will become my possession. Note to God, please Lord, let it be chocolate!).
• Alex will bolus when I say so (and not when she’s good and ready), and she will tell me when or if she has gone back for seconds.
• Alex will also always weigh her food out (even for seconds) and let me know carbs so I can figure the right amount of insulin.
• Alex will make an effort to check her sugar at least 3 times a day while at school (I actually bribed her to check 3 times a day – she gets paid only if she does), and take the right amount of insulin for what she’s consumed.

And yes, I know it’s a tall order for a 10 year old, but what else can we do?

I am disappointed and angry (mostly at myself) for the crappy A1C, but I am resolved that, in spite of that crappy report card, we will look forward.

In Remembrance of a New Angel

Just a few short days ago, I witnessed something at once devastating and miraculous that I pray I never ever have to witness again. Once my husband and the children leave for their respective destinations each morning, I log into my social networking sites to see what has been happening to my “friends” overnight in the cyber world. I know a lot of people have disdain for sites like Facebook but for me, isolated as I am from most of my family and friends, I embrace it.

On Wednesday morning, I read something that ripped my very soul apart; it read like this, “With heaviest of heart – the passing of Eilish.” Those few words told me that somewhere in the world, some mom was living my worst nightmare. Reading on, I learned that a cyber friend and CWD (childrenwithdiabetes) support group mom lost her Type 1 daughter to “Dead in Bed Syndrome,” where a person’s blood sugar falls while sleeping to a fatal level.

Eilish was a 13 year old New Zealand girl. It was obvious that she was loved mightily by her parents, her family, her little sister, and everyone who met her.

The previous night, I imagine, Eilish went to bed just as she always did. It’s a routine among parents of CWDs that one of the very last things we do before we go to sleep is check our child's blood sugar. I am 100% positive that was done – Eilish’s parents were vigilant with her care, and they were no stranger to diabetes care either as Eilish was diagnosed with type 1 diabetes at the tender age of 3.

I can just imagine after the blood sugar check… Eilish kissing her parents goodnight, teasing her little sister a bit, saying her prayers, nodding off to dreamland.

No one ever could have foreseen that Eilish wouldn’t wake up.

Facebook and the CWD website were ablaze with posts of disbelief, horror and sorrow. One by one, Facebook avatars were replaced with a lit candle, a symbol of hope and more; these words were shared by a CWD dad in memory of Eilish.

We light these candles - in your memory, to honour your life.

We light these candles - to provide solace your family in their time of loss.

We light these candles - as a sign that our thoughts and prayers are with you.

We light these candles - to give ourselves courage, and to lighten our sorrow.

We light these candles - to send you our love, and to light your way onward.


It’s not easy to convey emotion with the written word, but when you’re feeling it inside you as strongly as it was, the pain punches right through.

I was thankful that I had the house to myself, that I could cry and wail and grieve in private. As much as it kept the ache fresh, like a wave – always breaking, always breaking – I couldn’t look away from the outpouring of love and support my cyber friends were offering Eilish’s family.

While we look to share our grief as a means of enduring it, there was no way I could show my pain in front of Alexandra, so before her expected arrival I shut down not just my computer, but my emotions, and put my brave face on. When she arrived, I listened to her inane chatter (yes, I love her but she’s 9 and it is often times, inane) as best I could. But in the back of my mind, I could not help but dwell on Eilish, a sweet young girl that I never had the good fortune to meet. Neither can I ever forget her parents and the pain and sorrow that the people who loved her most are currently enduring – because I am that parent – we, the CWD parents – are all that parent, and we share their pain.

So, if you’ve followed along this far, I hope you’ll follow my example. Hold your children a little tighter tonight, say a prayer for a new angel named Eilish, pray that her family finds peace and comfort in the knowledge that she was their amazing gift, even if only for a little while. And pray harder still that a cure for this damned disease is found before another angel joins sweet Eilish.

The generosity of strangers? No... of friends!

See that? That is just a small sampling of the donated boxes of diabetic supplies that was sent to my mom's house. What you can't see are the boxes in the closet, the boxes under the bed, and the boxes that haven't yet been handed over to me.

It took hours -- many, many hours -- for me to sort through the boxes and repackage everything so that I could transport it back to Ghana in a couple of suitcases. And just when I thought I had it all done, we went to Virginia where we met some of the CWD parents who proceeded to hand me another half dozen huge boxes of stuff for donation. In truth, it was much more than I could haul to Ghana in my limited luggage allotment so some of it has been put in storage to be sent on a ship sometime later (when I raise the money to do that).

Anyway, let me give you an idea of what was in those boxes...

Glucose meters: About 70 meters, most of them brand new, and many including glucose strips and pokers. Most of the major brands and models were represented -- OneTouch, AccuChek, Contour, Freestyle, etc.

Syringes: Boxes upon boxes of insulin syringes (totaling about 2,000 syringes), including those with 1/2 unit markings which are great for smaller children (and which are NOT available here in Ghana).

Lancets: More than 50 boxes of lancets, each with 100 lancets inside (and if the Ghanaian parents of CWDs are anything like me then a single box will last for years - ouch!).

Insulin Pens and Pen Needle Caps: Including the ones that I got from Children's Hospital in D.C., there are a handful of brand new 1/2 unit dosing insulin pens with several hundred pen needle caps.

Books and Log Books: A half dozen books on caring for a CWD, including some brand new versions of the Pink Panther book (which, by the way, is available online here, just click on the online books and slides to the left and you can view each chapter individually). There are also nearly a hundred log books to track glucose and insulin. And I would be remiss if I didn't say that there was also a ton of pumping supplies for my own sweet girl, but that's a blog post in itself.

From those donated supplies, I created 25 goody (ziploc) bags which include a brand new glucose meter (OneTouch or Accu-Chek brands only) with glucose strips, poker with a box of 100 lancets, 50 syringes, a half box of alcohol swabs and a log book.

I had to limit the number of goody bags for two reasons: First, only OneTouch and Accu-Chek are locally sold, so at least I know glucose strips will also be available here; second, I only had so much luggage space to offer. As it was, I carried 100 lbs worth of donated diabetic supplies in my two suitcases (sacrificing, according to Sean, significant space for the things he wanted to buy!). Those two bags, however, raised a red flag among the TSA people who searched both at the airport (naturally, I didn't find out till after the fact by the TSA notice found among the supplies), but they came through relatively unscathed thanks to some foresight on my part (I included a letter from our Ghanaian doctor stating that it was all for donation to impoverished families).

These goody bags will be going to the Children's Unit of Korle-Bu Hospital, to be distributed freely to needy families by Alexandra's doctor, Dr. Lorna Renner. What she will also be getting is another 25 (give or take) glucose meters and glucose strips for brands not locally available; I could not see letting these go to waste, and I am sure she can put these to use at least in the wards, and then when the strips are done, they can be tossed away (a shame, I know, but what can we do if Freestyle and Bayer do not want to come to Ghana!).

All of these items were freely donated from parents and caregivers of children with diabetes who live in the United States, and lest you think "what's the big deal since they were (probably) covered by insurance anyway?" Trust me, it is a big deal. Parents understand that these supplies are their child's lifeline and they stockpile (when they can) these lifesaving items for their own child's use. It is only because we understand how difficult it is to manage this disease -- under the best of circumstances -- that we can sympathize with the plight of parents who have so very little that they can offer their children.

To us, the cost of that diabetes goody bag is trifling; maybe it was covered by insurance, or maybe it was provided as a sample by the doctor or endocrinologist, or maybe its a tiny percentage of the diabetic supplies stockpile. To a Ghanaian parent, however, it is the difference between feeding their family for the next six months and keeping one diabetic child alive. These items in the goody bag, if bought here in Ghana, would cost a very dear 180 GHC (or about $125). The parents who take their child to Korle-Bu -- a very good hospital in its own right, but with significant funding problems -- are among the poorest in the area.

I can't wait to see the smile on Dr. Renner's face when she sees what we've brought her, courtesy of the generosity of friends.

When the honeymoon ends

Last month marked the 2 year anniversary of Alexandra's diagnosis. For some parents it seems a little cruel, perhaps even obscene, to mark it with ceremony, but I believe that it must be acknowledged for what it truly is: A blessing. Every single day, regardless of the headache my child has given me, how many more gray hairs I've sprouted, how hoarse my vocal cords are from yelling at her, every single day is a blessing.

We've also been blessed by some amazing friends. You read in my previous post that Alex would be getting an insulin pump; well, it's a done deal. The pump is already at my mom's house just waiting for Alexandra to strap it on and put it through its paces.

Also at my mom's house is a closet-full of donated pumping supplies and diabetic paraphernalia. I think my mom is going to need a bigger closet. Hardly a day goes by without someone emailing me to ask what they can send or to tell me about how they've mailed off a new glucose meter or strips or lancets or syringes. All I can say is, I am in awe of the generosity and kindness of the CWD community. I am sure I will need a whole suitcase (the 30" one!) just to hold it all.

Oh, haven't I told you yet? We're going to New Jersey! Yes, on July 25th we will leave Ghana for a long over-due well-deserved 6 week vacation. Sadly, my hubby won't be coming but he will be working hard to get our new home ready for us when we return, so it's all okay.

We are making a lot of plans, including a trip to Washington, D.C. to see a pediatric endocrinologist for Alex. Let me be clear, I love Alex's doctor here -- Dr. Renner is the most amazing compassionate woman you could ever meet. But she will be the first to tell you that she's not an endocrinologist and it was at her recommendation that I pursued an appointment.

Boy, let me tell you what a trip it is to get a doctor's appointment in the U.S. I do not envy at all any of the PCWD friends for what they deal with. Two months ago when the trip was first planned I contacted friends for recommendations for a pediatric endo in N.J. I had my poor mom calling all over the place and no one could squeeze us in even for a single consultation. Everyone was booked, no one was taking new patients. Even under these extraordinary circumstances no one was willing to even consider an appointment for Alex.

Then along comes my friend Tracy-Ann who works for Sanofi-Aventis, the maker of the Lantus insulin my child relies (i.e. lives) on who tells me she can get me an appointment at Children's Hospital in Washington, D.C. with the pediatric endo there. How about that? Another blessed friend! So that is on the schedule for August. To say I can't wait to talk to her is an understatement. I have a lot of questions and concerns that our doctor can't address right now.

What, you wonder? I've got celiac on my brain, truth be told. Alex has been nearly the same weight, give or take a pound or two, for nearly 21 months. Sure, she's grown a couple of inches but no weight gain? And she eats, boy does she eat! But there are also a few other things that are niggling me about her, too, like the unexplained tummy upsets on a regular basis, and her hemoglobin levels have always been low or even below the reference ranges.

Maybe that's not evidence enough but it got me looking into celiac testing a few months ago. Unfortunately, that's not a common test here and the only lab that is willing to do it has to send the sample overnight to South Africa. At my cost, of course. We're talking $300 just for shipping it. So celiac testing will wait till we get to the U.S., and then we'll have it done. At the suggestion of another PCWD I contacted the Celiac Center at the University of Maryland and bluntly asked if they'd be willing to test Alex for free. Can't hurt to ask, right? Nope, it doesn't, because the program's founder agreed to do it, so that's set, too, for August.

We've also been recently blessed by medical insurance through my husband's job, and Alex's insulin and most of her medical tests are covered. Good thing, too, because we needed a boatload of them done at the 2-year anniversary. One of those tests was something called the c-peptide, and I won't go into it in detail but suffice to say that the body spits out c-peptide in equal measure to insulin, so if your body makes X amount of insulin that it also makes X amount of c-peptide. I'm not an expert at interpreting medical tests, but if the test says Alex's c-peptide level is 165 and the reference ranges for someone who is fasting (which Alex was not, by the way) are between 365 and 1600 then I'm pretty sure it's okay for me to say Alex makes no insulin on her own. With what she'd eaten just before that test I'm pretty sure insulin would have been coming down in buckets if it could have, but it didn't.

That makes me kind of sad, but it's what I expected. I saw it coming when her insulin needs rose to nearly 32 units a day from 21 units only three months ago. I think her recent upper respiratory infection might have hastened the honeymoon's demise. Oh well, what is, is.

You've probably noticed, too, that I haven't updated in a while. My friend Leslie, who just came back to Ghana after having been away for a year, noted that I wasn't that uptight anymore. She was just being kind. I am still pretty anal. But I realize that this new normal isn't going to change any more and if I keep allowing it to stress me out as much as it did during the first year then I'm doing a disservice to my daughter, and my sons and my husband. And, more importantly, to me. I plan on being around for a long long time and I have to learn and accept that I can't really be Alex's pancreas, much as I'd like to be, but I can do the best that I can with the tools that I have at my disposal.

So, the honeymoon is over. That's alright. I am looking forward to the joys and challenges of the future. Alexandra's diabetes may get me down once in a while, but it won't keep me down. And we have a trip to see my family in less than 3 weeks. No one -- absolutely no one -- could be more blessed than I.

Can you keep a secret? Alex is going to get a pump!

This is all very hush hush, and not a done deal. Not yet, only because I haven't received it yet. But, on the basis of my faith and trust in the person who will be sending an Animas 1250 Pump (plus various accouterments), Alexandra, my too sweet girl, will be a pumper by the end of the summer.

The story goes like this...

A while ago, I posted a request for donations to our CWD forums and got a bunch of expected replies (CWD parents are amazingly generous and kind -- the thought that a D child somewhere in the world is doing without the basics simply because of monetary and logistical constraints physically hurts them)... and one very unexpected one. One very nice lady offered her son's insulin pump, which he doesn't use any longer because he has a different type of diabetes, one that is treated with oral medications as opposed to insulin injections (a very interesting story, by the way, and it would be a disservice to try to accurately explain it here, so I will leave it to Christy to do the relating through her wonderful blog).

Now, originally, I declined her kind offer, because I was worried about getting the supplies needed for pumping -- like reservoirs, cartridges, insets -- I mean, that's a whole new language for goodness sake! But then, Inga, another CWD parent, followed up and said that if I took Christy up on her offer, she'd be happy to send me a month's worth of the reservoirs and some other things I would need, because she had a huge supply (CWD parents tend to hoard, and I don't blame them in the least, think Katrina and you'll understand why). I started thinking This.Could.Work!

So I backpedaled, and asked Christy if I could rethink my declination. And she happily agreed! She sent me a huge list of stuff that she would include in the box along with the pump itself, and my jaw dropped -- all this?! I'm scared now. How will I ever learn how to use this "thing" to keep Alex alive? I have a degree in finance, not engineering! I mean, I had to read the manual to figure out how to work my Nintendo DS -- an insulin pump? *GULP*

But I am going to keep thinking positively, and I've been starting my own stockpile of things that I will need. I figure, if I can get a month or two worth of donations under my belt, I can (little by little) buy the other stuff Alex will need, without breaking the bank. I mean, it already runs us well over $400 a month just on MDI -- add pumping supplies to the mix and we're talking beaucoup bucks.

Now, Alex doesn't know the good news yet, so let's keep it our little secret.

Welcome to our Wacky World of Weirdness

Hard to believe that several months have passed since my last post, but life does have a way of catching up with you. And truth be told, I’ve been so apathetic of late, that I’ve no energy to do anything, it seems. Maybe I’m a bit depressed, too. I’m missing my home like crazy – 3 years since I’ve last seen my mom. Maybe I just need a hug.

I know, enough with the pity party, get on with it!

Anyway, yeah, three months. It’s been a crazy three months. Alex celebrated her 9th birthday during this time (she’s a groundhog baby, by the way), and she has grown so much taller. No weight gain, which is exceedingly worrying to her daddy, but she has grown a few inches. So, if doc ain’t worried, I ain’t worried.

Her little body is changing changing changing. Her insulin requirements have gone crazy – up then down then down some more then up again. Part of that craziness has been because of scarily unexplained fevers that she had for well over a week last month. Every morning at 2:00 am (an insane time, if ever there was one) I’m up checking her sugar, and as I grabbed her wrist I could just feel the heat pouring out of her. Like a blast furnace, it was. I grabbed the thermometer to check -- nearly 104F. Not good at all. It took a combined dose of Tylenol and Advil to bring it down, but then I found that as soon as they started to wear off, her fever would creep right back up. Funny, aside from the fever, she says she didn’t feel that bad. Granted, she had a bit of a sore throat for a few days, but no tummy bug, no earache.

We’d just seen her doctor for her quarterly D-check-up about a week before, and I had the doc give her a good look over, and specifically check her ears. Not so much for a sign of infection, but for something else. About a month before, Alex was playing in the room with some little beads. And I heard her counting the beads – 20, 21, 22, 23. A little while later, she asked me what would happen if she put something in her ear. (Are you rolling your eyes right about now?) Naturally, I asked, “Why, did you put something in your ear?” “No,” she says, “just asking.” Okay. I go back in the bedroom and see the beads – 20, 21, 22… where’s 23? No 23. Okay. Alex comes back in and we do the song-and-dance routine again and she still insists she put nothing in there, but I’m welcome to look, “if you want to.” Okay. I look. I see nothing. I do the hydrogen peroxide (just like our mom used to) in the ear bit and they each bubble up like crazy (please don’t judge my daughter’s cleanliness by this, I generally subscribe to the don’t-put-anything-smaller-than-an-elbow-in-your-ear school of thought, she’s really a very clean kid).

Anyway, doc takes a look and finds nothing in her ears (just wax), and only a bit of redness at the back of her throat. Doc suggests an antibiotic if she keeps complaining about her throat. A few days later, when the fever starts up, I decide that we need to take the antibiotic route, and we get the most basic of all – the pink stuff. Amoxicillin. I was unusually vigilant in administering it; she got it exactly when she was supposed to and finished the whole course. But, still, nothing helped. The fevers continued every single day and every night.

On Sunday, I call the doctor and she tells us to come in to the hospital, so off we head to Korle-Bu. Despite the pain reliever I’d given her, the fever still rages and the doc orders some blood work and a blood culture, and they want to give her an injection of Rocephin which is supposed to be an extremely powerful antibiotic, but it only works for 24 hours. So, Alex and I are in the emergency room, and we’re seeing the doctor on call. She tells me that our doctor said that because of the amount of blood they need and the Rocephin that they should put an IV line in her hand. The doctor assigned to do the IV asks Alex if she’s going to cry about it. I tell the doc she needn’t worry; Alex is very brave and can handle it. Well, little did I know that this particular doc failed her class in putting in IV lines. Alex didn’t cry at the first attempt (though I did see her biting her lips), but on the second try, the silent tears just flowed. The best the doc could come up with was, “sorry.” Really, this is the pediatric ward; you’d think these docs would have a little sympathy for the children in their care. This one didn’t. Apparently, she failed compassion class, too. Bitch.

So blood is bottled up and hubby has to run the tubes all the way across the hospital compound to the main lab (and he knows where it is because he had to run there to get the empty tubes!). Unfortunately, it will be days before preliminary results are in, and a week before the final lab results come up. While Sly is out, he’s also been charged with buying the Rocephin from the pharmacy, as well as the antibiotic we’re to take home. The children’s (liquid) version is a hefty GHC 40 and we don’t have enough money, so we get her the adult’s (tablet – horse sized tablet) version instead which is half the cost.

A (nice) older nurse is preparing the Rocephin for the injection. And she comes over with it and tells Alex just to hold still and “grandma” is going to inject it very very slowly into the catheter. Alex, trooper that she is, looks at me and then holds her hand out. Two seconds later, as the nurse slowly injects, Alex says, “I think I’m going to vomit.” One second later, she does. All over me as I’m trying to catch it in my hands (oh, what we mothers do for the sake of our children). The nurse is yelling for someone to bring over a kidney basin, but everyone is ignoring her.

Finally, injection finished, blood work drawn, we head home. Exhausted and smelly.

It would take the whole week’s worth of antibiotic and regular Tylenol and Advil to keep the fever under control. Malaria test – negative. Preliminary blood test – negative. Final blood test – negative. So, it seems we’ll never know what was wrong with our Alex. We only know what the sickness did to her.

Her body went wacky. Whereas in the past I could give her a single unit of Humalog and she’d drop between 4 and 5 points mmol (that’s between 70 and 90 mg), a single unit this time dropped her twice that, sometimes even more. One night, just before the fevers started, when we were conservatively correcting a pizza high, the two units of Humalog that I gave her should have been fine. Instead, 45 minutes after the shot she complained that her eyesight was blurry. I’m thinking she’s spiking from the dinner. No, she’s plunged from 16.9 to 1.9 (from 304 to 34). It took several juice boxes and glucose tabs to even bring her up into range. I will always recall that day as the one when I nearly killed my own daughter. I know, not my fault, it is D’s fault. But I gave her the injection, it doesn’t assuage my sense of guilt.

We are only just now, a month later, getting back to where she was before, in terms of blood sugar and insulin needs. For a long while, I just had to let her blood glucose run high and conservatively correct – no such thing as a pre-bolus then. I wasn’t even allowing her to take her insulin pen to school, because I couldn’t trust it. Her numbers for the month of January are as ugly as I’ve ever seen them (but very pretty on a graph!) and I suspect her A1C will have gone up as a result. Oh, well.

As much as this is a horrible, generally unpredictable disease, I prefer it when it’s just a normal horrible, generally unpredictable disease. This kind of wackiness, I can do without.

Open letter to our friends

Those of you who know me well know that I am one of those people who, as a child, was always in search and support of a good cause… I trick-or-treated for Unicef, raised money for “Jerry’s Kids” with Muscular Dystrophy by knocking on doors, walked 20 miles with Christine or Josie for a pledge of 10 cents a mile in support of the March of Dimes. As I grew older, I did my bit with United Way and Salvation Army, too. It seemed there was always some needy kid who I was compelled to help or research group to be funded. There was always a cure on the horizon for lots of horrific diseases and disabilities.

But I did that without any real personal involvement. I didn’t know any of those kids. I was sympathetic to their plight. But I had no had no real feeling for what they endured.

Now, I have a new cause. And this one I embrace with all my heart and soul and every single fiber of my being, because it affects my youngest child. Some of you may not know this, but a little more than a year ago, our daughter, Alexandra who was 7 years old at the time, was diagnosed with type 1 diabetes, or what used to be called juvenile diabetes.

Now, I didn’t know anything about diabetes. I knew Mary Tyler Moore had it, but couldn’t figure why it was called “juvenile” diabetes – certainly she was no juvenile. I knew diabetes had to do with sugar and sweet stuff, but I didn’t know anything else.

Boy, what a difference a year makes.

I’ve learned that type 1 diabetes is an auto-immune disease; that a person’s body basically attacks itself – in this case, the pancreas – and that nothing a person did or didn’t do could have prevented it. No one knows why some people get it and others not. The pancreas no longer produces insulin, a hormone needed to convert the sugar and carbohydrates you eat into energy.

Without insulin, plainly speaking, Alexandra will die. But insulin – as wonderful as it is – is not a cure.

The only cure is a cure.

But there is hope on the horizon, and it takes the form of Dr. Denise Faustman of Massachusetts General Hospital. Dr. Faustman has actually cured type 1 diabetes in lab mice, with an FDA-approved drug that is already on the market. The problem is, because the drug is already on the market and widely available, there’s just no financial incentive for the pharmaceutical companies to embrace Dr. Faustman’s efforts.

I won’t bore you with the details. Suffice to say it’s something I’ve researched, and I am more than hopeful that within my daughter’s lifetime there will be a cure.

But the cure won’t come without funding. The Lee Iacocca Foundation has contributed $10 million to jumpstart the human trials, and money is trickling in through grassroots organizations such as one I’m happy to be a small part of – Help Cure Childhood Diabetes.

So, if you’ve stuck with me this far and you knew me as a child, you know where I’m going with this… please help. Your donation toward research for a cure would be appreciated more than you can ever know. This link will take you to Alexandra’s web page and from there you can link to the donation page at Massachusetts General Hospital.

And if you just can’t make a donation right now – times are tough here, too, I understand – I’d appreciate your prayers instead.

With thanks from the bottom of our hearts…

Barbara and Sylvester

Playing catch up

It is not easy to get back into the swing of things, once you’ve been out of the loop for a while. I’ve neglected this blog and no one except my Facebook and CWD friends have any clue what life has been like for us here in the jungle over the past couple of months. Mostly, it’s because it’s been relatively uneventful. That’s not to say that nothing ever happened. Because this is type 1 diabetes we’re talking about, and something is always happening.

June 25, 2009: RIP OneTouch Ultra 2 Glucometer

This is Alexandra’s 1 year anniversary of her diagnosis. Her meter – her very first glucose meter 2 – up and died on us that evening. (Ralph Nader would have had a field day with that fact, I think.) Oh, we tried to revive it; we changed the batteries, opened up a package of new glucose strips, all to no avail. It just would not work. C’est la vie, right? But, I couldn’t let it RIP, no way. It seemed to me that after only a single year, it should still be in good working order. I mean, we spent nearly $100 on that meter (sans glucose strips, by the way) and while I had other meters we could use, it was the principle of the thing, ya know? So I emailed LifeScan (which is a Johnson & Johnson Company) and complained. And what do you know, within two days I had a response from a local distributor. Yes, my meter was still under warranty and would be replaced. Whoo hoo! The identical meter is now back on our headboard. Bonus discovery! We found out that the distributor (Palb in Kaneshie) sells glucose strips to the public at GHC 50 for 50 strips. That’s good to know… and waaay cheaper than you can buy it anywhere else in Ghana.

July 27, 2009: Lantus trouble

We buy 5 cartridges of 300 units at a time, and I had opened one up that day, given Alex her shot and then noticed that already nearly 80 units were missing. Went to go get another vial, and there was no other vial! We were going through these things at an astronomical rate! Alex uses a mere 13 units a day, and even given an extra 4 units for the pen priming, there’s no way we could have finished 4 (and been on our 5th!) in only three months. So, silly old me, I email the Lantus people (Sanofi-Aventis). They put me in touch with the local distributor who agrees to replace the “missing” Lantus. I head out to the pharmacy with Alex’s insulin pen and the Lantus cartridge, and the representative comes down. He’s a nice young man just aching to help. Within a relatively short while, I’ve got two replacement cartridges and a new insulin pen (which doesn’t work for Alex, but that’s another issue). The nice young man also told me where I could find Lantus is Tema, so I don’t have to drive so far.

So, two complaints solved to my satisfaction. I was happy about that. I am not so happy to think about all of the other local people who maybe have suffered the same sort of problem but didn’t know they had any recourse.

August 20, 2009: Barbara learns a lesson

I hate to be on the last cartridge of insulin before replacing it. You just never know. I had just opened the next to last cartridge and remembered my new friend from Sanofi-Aventis telling me about the local pharmacies that stock it, so I hightail it over to the first one. They don’t have it, but say they can order it for me. It’s a rinky-dink little place, and I’m not all that impressed. For what it’s worth, I am a pharmacy freak – I love looking at bottles and packages and drugs and wandering up and down the aisles. This had none of that.

Then I head over to the other pharmacy that was suggested. Now, this is more like it! Bigger, cleaner, brighter, lots of drugs and a very nice pharmacist dressed up like a pharmacist! But they don’t have the Lantus in stock either, but they can order it for next day delivery! “What’s the price?” I enquire (knowing, of course, how much it costs me if I go directly to the distributor). Oh, well, they’ll have to see if the price went up but last time it was GHC 90 (I know it’s now GHC 95).

So here I am, naïve little me, thinking okay, even with a mark-up, it’s probably not gonna cost more than GHC 110. GHC 130! How’s that for a mark-up? Alex and I walk in the next day to pick it up and I almost passed out when he told me the price. I sputtered, “Wow! That’s some serious mark-up you guys put on this.” And the pharmacist (different one than the day before) says, “Really? We only mark it up 33% -- other pharmacies mark up 40%!” Um, I don’t think so. “Well,” I tell him, “we’ve got a problem, because all I’ve got is GHC 110.” The guy looks at me and says, “So what do we do?” I’m thinking, “What do we do? How about I walk out of here leaving you with cold insulin in your hands and I go to the distributor and save myself GHC 35.” I say, quite frankly, “This is all I’ve got, take it or leave it. I wasn’t expecting a mark-up like that and I can’t afford it.” He’s clearly not happy, but he either sells it to me for that price or it sits in his fridge… I mean, what’s he gonna do, hold Alex for ransom?

Long story short, he calls the other pharmacist who agrees to mark it up only 10%. Barbara learns her lesson: Cheaper to buy directly from the wholesaler, all things considered.

October 12, 2009: The Humalog Dilemma

Alex also needs Humalog; it’s a fast acting insulin and is one of the primary weapons in the fight against high blood sugar. She was running low (I sheepishly admit it, she was down to her last cartridge), so I called up the pharmacy who distributes this and was told that they have it in stock. I draft a letter and pull the money out to buy it and send our taxi driver, Ekow, to the pharmacy in Accra.

An hour after he leaves me, I get a call from him. He’s at the pharmacy and they have the Humalog but it expires 10/09. Note to self: REMEMBER TO ASK ABOUT EXPIRY DATE NEXT TIME! I get the pharmacist on the phone, and he confirms they’re out because all of their supplies have been sent to Korle Bu Hospital, except for this package which is expiring in three weeks. “Do I want it?” the pharmacist wants to know. Of course, I don’t want it! It’s for an 8-year old girl; she’ll never finish it all before it expires. The next shipment isn’t coming in until next year, I’m told. I call my taxi driver and tell him to forget it.

A few days later, I decide to drive to the hospital to find the Humalog, and Ekow takes me there. Supposedly, you’re supposed to have a prescription at the pharmacy, so like a good consumer I head up to find a pediatrician who can write one out for me, since Alex’s main doctor isn’t around. I find no one I know, but do find a surly doctor who looks down her nose and tells me to have a seat in the waiting room till she can get around to me. I’ve got little patience for beaurocracy, so within minutes I’m out of there.

I tried the first main pharmacy, and they’re willing to help me (after all, the universal language in Ghana is cash!) but they’ve not got Humalog; they’ve got Regular and Lantus (good to know for later, but right now I don’t really care) but no Humalog… maybe one of the other pharmacies on the hospital grounds. Off I go in search… after the third pharmacy, I’m starting to get frantic that I’ll not find this stuff and have to rely on Regular insulin. I spot one of Alex’s doctors walking around and she directs me to the Diabetes Clinic. Saddest place (well, next to the children’s wing) that you ever want to see. They’ve got Humalog, but with the same expiration as the one from the wholesale distributor. I am sincerely frustrated at this point. I head back to pharmacy #1 and buy the Regular, just in case.

I go online looking for commiseration from my CWD friends, and learn that it’s alright to use the expired insulin, because the pharmaceutical companies are usually very liberal in their dating, so that they don’t run into lawsuits and such. It’s not like on October 31st that the insulin will instantly self-destruct, it may just degrade over time. That news comes as a major relief to me.

So I tell my husband to pick it up from the pharmacy, after I confirm again that they’ve got it in store. This time, without my even asking, they advise me that it will expire at the end of the month. I tell them it’s alright, I want it anyway and that my husband will be there to pick it up later in the day.

You can imagine my relief when Sly came home that night and handed me a box of Humalog 75/25 Mix!!!! What! They screwed up the package in the pharmacy, and Sly didn’t think to check the box (and to be honest, I’m not convinced he’d have known that it wasn’t what I really needed, anyway).

Here we go again.

"I’m low, I’m low, I’m low."

She was definitely low. The D-demon had reared its ugly face that day; fighting with her brothers, slamming doors, answering back – screaming back, actually – just generally behaving very very badly. The D-demon couldn’t be restrained. Oh, we tried. God knows, we tried. It all started like this…

Sunday, August 9th began like every normal day. I awoke and made a cup of coffee, surfed the net a bit and then at about 8:30 went back into the bedroom to check on Alex. She had been running slightly low overnight, which I attributed to a long day of swimming on Saturday. Not a big problem, just a matter of being sure some fast-acting glucose is on hand to prop her up a bit. Alex can gobble glucose tabs in her sleep.

The morning was uneventful, but maybe the D-demon was just still sleeping. I don’t know. By lunch time, though, it was obvious the D-demon was surfacing. Out of nowhere and for no good reason, there was screaming. Then fighting. And throwing things. I grabbed the D-demon by the arm and banished her to the bedroom. I tried begging and reasoning and holy water, but nothing worked. The D-demon was as evil as ever…



Me: “You could have hurt your brother by throwing that at him.”

D-Demon: “That’s sweet for him.” (Translation: Tough shit.)

Me: “Get in your room and stay there! Don’t come out till you’re normal!”

Then I slammed the bedroom door, wedged a crucifix through the door handle and sat down and prayed. Okay, I didn’t pray, but I was mumbling under my breath. Then I went back to my laptop and got back to the editing work I had been doing before I was so rudely interrupted.

I kept meaning to get up and check on the D-demon. But 5 minutes stretched to 10 and 10 minutes stretched to 20. And before you knew it an hour had passed. And it was quiet in there. Too quiet.

I opened the bedroom door, and immediately heard a low monotone voice repeating… I’m low, I’m low, I’m low. It was my Alex, not the D-demon, lying face down on the bed in only her underpants. My daughter was low and she knew it and she was scared. I grabbed the meter and squeezed out a drop of blood. I saw a number that I never hope to see ever again in her life – 1.0. That’s a frightening – terrifying – heart-stopping number.

I rushed into Mike’s room to grab his stash of Lucozade (I’d address this food hoarding issue with him later, but now, I’ve got another emergency to deal with) and raced back forcing her to drink. Fourteen minutes later, she’d only gotten up to 3.5. I tried more Lucozade and waited another few minutes. Whew. Finally, she’s at 9.2. High. Now we’re in the comfort zone. I made her some bread with butter and she ate it nicely.

Once my blood pressure was back to normal, I apologized to her. I told her that I never should have allowed her to go to bed without checking her first. The D-demon cannot have that kind of control over either of us. Even if I would have had to hold her down for a blood drop, I should have done it. You see, the D-demon is a tricky devil – used to only come when her blood sugar was high. No more. Now, the D-demon surfaces whenever it wants.

With perfect 20-20 hindsight, I realize that I did a couple of things wrong. I gave Alex her insulin for lunch and cookies, except that she didn’t eat the cookies ‘cause she didn’t like the cookies. Then I forgot to give her a replacement food for the cookies. Combined with the lows from yesterday’s exercise and my anger/frustration with the D-demon – well, it was a disaster of Hindenberg proportions.

As I said, I apologized to her. And you know what, Alex wouldn’t accept it! Nope, I tried and tried to take the blame for her low and she would have none of it. She told me that it was all her fault. Those are some very mature words coming from an 8-year old who has to accept much more responsibility than she should have to.

Now, I feel really guilty. And really proud.

4238

One year on…

Alexandra has now had type 1 diabetes for a single year. In that one year, she has gone from blood sugars that averaged in the mid-20s /mmol (that’s 400 to 600 /mg) to blood sugars that average less than 7.0 /mmol (125 /mg). For reference, a non-diabetic has blood sugars of less than 100 normally.

At diagnosis, her A1C, which measures the sugar in her blood over a 3 month period, was 14.7%. That equates to 22.4 /mmol (or 404 in the U.S.). Her most current A1C, done a few days ago, was 6.5% which equates to 7.2 /mmol (130 /mg). That’s a full point lower than it was last March. People with type 1 diabetes would love to have an A1C like that. And parents of children with type 1 diabetes would kill to see that for their child.

That A1C does not come easy. It calls for lots of sacrifices, from all of us, Alexandra most of all, naturally. That 4,238 represents 2,718 finger pricks to check her blood sugar plus 1,520 injections. Give or take a handful, when maybe I forgot to log it. On average, though, nearly 12 times a day, my child has to have herself poked with a needle or a syringe.

In a single year: 4,238.

It’s been a long year. One in which I’ve aged probably ten-fold. I haven’t yet slept a full night through. I miss that. I also miss the spontaneity of our lives; everything has to be planned and thought through. I miss the sweet girl who used to live with us, who is occasionally replaced with her demon double. I really miss the “before” diabetes days.

But the after is what we’ve got to live with. And live with it we shall.

And one year on, I’d be remiss if I didn’t thank the people who helped Alex achieve a very successful first year… people like Michelle, Jane, Adjoa, Carla, Beth, Paula, Tim, Melissa, Scott and probably another dozen wonderful people who I hope will forgive me for not specifically mentioning them here. They’ve helped us by providing meters, strips, insulin pens, i-ports and all of the things that Alex needs to live her life to the fullest. And I can’t put a price on the emotional and psychological support I get from friends all over the world, friends who share with me one single all-encompassing value: We each love a child who has diabetes.

Most of all, I want to thank my mom, because we couldn’t have done it without her. She's sent umpteen care packages, all packed with necessities and goodies. And she'd be here in a minute if I asked her to be. Don't worry, mom, I won't ask. ;-)

Last, but not least, I want to thank Alexandra. She didn't ask for this stupid disease, and no, she didn't do anything to get it. But, she does what she has to do, usually without a grumble and sometimes even with a smile.

She's still my hero.

Please, pray for a cure.