Every night, before going to sleep, Noah recites the same prayer......verbatim, and i think in his perspective, in order of importance =)
Monday, October 18, 2010
Faith and Diabetes
I'm Catholic. But not a very devout one. I used to be when I was younger. How could I not be? The Philippines is a Catholic country. My family is Catholic. I attended exclusive Catholic schools from nursery onwards. A good majority of my friends are Catholic. There is no escaping Catholicism when you're born in this country. Over the years however, I've become a lazy Catholic. Don't get me wrong, I've never stopped believing in God - in all three forms of the Father, the Son, and the Holy Spirit. I believe very much in Mama Mary and in Sto. Nino (I daresay all Cebuanos do). I believe there are saints and that we all have souls. I always pray each night before going to bed. I admit to occasionally falling asleep before finishing my prayers and maybe even altogether missing my prayers on some nights but my point is I'VE NEVER STOPPED BELIEVING IN GOD! What I have become however is a lazy "church-goer". I can't remember too the last time I went to confession. Yes i'm guilty of being remiss in my Catholic obligations. I've sort of just settled to my bedtime prayers as my way of communing with God....until diabetes struck my little boy.
When i heard the endocrinologist say there is no cure for type 1 diabetes and that it's a condition my 23-month old son has to contend with for the rest of his life, my instantaneous response was, "F**k you! I want another doctor!" These words stayed inside my head though. It wouldn't have been fair to say it out loud to the nice doctor. It's not her fault Noah has diabetes after all. And with the shortage of pediatric-endocrinologists here, i couldn't risk pissing off the best of them. Besides, no words would’ve come out even if i tried. I was literally speechless with shock.
So while holding down Noah in the emergency room bed so that the people who couldn't make his illness go away could stick him with needles and hook him to machines and draw blood from his little arms again and again and again for all sort of tests that (again) would not lead to a doctor's prescription that would make him well but simply confirm that he is indeed unwell, I, the lazy Catholic was quick to remember my God. Shame on me to run to Him so quickly now that Noah's in trouble. But when science has no answer, who does one turn to but God?!
It’s been many months since that night my husband and I rushed Noah to the emergency room. And I have prayed to God in so many different ways - almost like experimenting which kind would work. Strange. How a desperate woman, a desperate mother tries to deal relentlessly with a God whom for a single moment I truly hated when I felt He had turned a deaf ear towards my plea - a single plea really: Please heal my son.
My prayers started out as cries for help: Dear God, please heal my son. That became a mantra in the emergency room and the whole week we stayed at the hospital - from the Intensive Care Unit and then to the regular room when Noah’s “sugar” (Capillary Blood Glucose or CBG level), as we simply refer to it now at home, had stabilized. When we had checked out of the hospital and returned home with Noah still a diabetic, it dawned on me I must have done something terrible to merit this punishment inflicted on my son. So I changed my prayers to, Dear God, I’m sorry for all my sins. I’m sorry for no longer attending Sunday masses and other holy days of obligation. I’m sorry I haven’t heard confession in years. I’m sorry for whatever it is I did that truly pissed you off! I’m sorry I’m sorry I’m sorry. This pleading for forgiveness so Noah would get well did not last very long either. It didn’t take very long for me to return to my senses. God is not a punishing God. That much I believe in. And even if he were, he would never use an innocent soul to make a tarnished one like mine suffer for my sins. So, I resorted to bargaining. Dear God, take away all my fucking hair (I had developed alopecia just a month into my second pregnancy and just two months before Noah was diagnosed). I know I’ve been bugging you for months now to put a stop to my hair falling out but I take that all back now. You can kill every fucking hair follicle in my body, just take away Noah’s diabetes. MAKE HIM WELL AGAIN! At this point, I was truly truly consumed with anger. I honestly considered offering my soul to the devil, if only i believed in the devil. But I didn’t. And I still don’t. Well, God didn’t take away all my hair either. He took a lot of it, that much I can say. But not all. I just decided to shave the rest of my hair off to bring home a point. I can live without my hair (I didn’t think so before Noah got sick) but I don’t think I can live and stay sane knowing what my son has to deal with for the rest of his life. My husband and I then brought Noah to healing masses. At this point, I was already beyond desperate. I really just wanted to try out anything to make God listen to me. With every mass, I hoped for a miracle but at the same time I feared disappointment. And obviously, every healing mass ended in disappointment. But NOT QUITE.
You see, over these difficult months and over the many prayers stated in so many different ways, I have finally come to see that I have always had that miracle staring me at the face every single day: Noah. Through his daily ordeals, my little boy has stayed happy. He has stayed playful and fun. And he has been very brave. He doesn’t mind “prick time”. It didn’t take him very long to get used to his daily multiple insulin shots. And at two and a half years he has learned to set up his own “kikay” kit (that’s what we call his diabetic paraphernalia) himself. Lately, he has begun to push the insulin pen dial when it’s time for his shots. And he’s now showing signs of being able to recognize a hypoglycemia (“sugar” levels going too low when he doesn’t eat enough after his insulin shots) when it’s starting to happen, “Mama, prick time. Noah cold” That’s what he tells me when he feels “low” while touching the back of his neck to let me feel he’s starting to get cold sweats. Or he simply says, “Mama, milk!”, and lies down on the bed waiting patiently for me to get him his milk. When this happens, I want to shoot myself in the head for not anticipating and therefore preventing the hypoglycemic episode, for miscalculating his carb consumption and not correctly predicting the time for his next meal or snack. But my point is, Noah is coping! and coping faster and sooner than I had expected. He’s coping better than my husband and I are coping. Most of all, he’s alive. And he’s healthy. I cannot ask for anything more.
And so these days, when I pray, I pray for FAITH. Faith can move mountains, they say. And I believe it does. I believe FAITH will make Noah tame his diabetes. He will eventually beat it. I believe God will grant Noah a miracle - if not the miracle of healing, then the miracle of living a full life in spite of his condition. I will never understand why Noah got diabetes. And I no longer struggle to. All I ask from Him is Faith: Faith that EVERYTHING will be alright.
When i heard the endocrinologist say there is no cure for type 1 diabetes and that it's a condition my 23-month old son has to contend with for the rest of his life, my instantaneous response was, "F**k you! I want another doctor!" These words stayed inside my head though. It wouldn't have been fair to say it out loud to the nice doctor. It's not her fault Noah has diabetes after all. And with the shortage of pediatric-endocrinologists here, i couldn't risk pissing off the best of them. Besides, no words would’ve come out even if i tried. I was literally speechless with shock.
So while holding down Noah in the emergency room bed so that the people who couldn't make his illness go away could stick him with needles and hook him to machines and draw blood from his little arms again and again and again for all sort of tests that (again) would not lead to a doctor's prescription that would make him well but simply confirm that he is indeed unwell, I, the lazy Catholic was quick to remember my God. Shame on me to run to Him so quickly now that Noah's in trouble. But when science has no answer, who does one turn to but God?!
 |
| Noah in the ICU |
It’s been many months since that night my husband and I rushed Noah to the emergency room. And I have prayed to God in so many different ways - almost like experimenting which kind would work. Strange. How a desperate woman, a desperate mother tries to deal relentlessly with a God whom for a single moment I truly hated when I felt He had turned a deaf ear towards my plea - a single plea really: Please heal my son.
My prayers started out as cries for help: Dear God, please heal my son. That became a mantra in the emergency room and the whole week we stayed at the hospital - from the Intensive Care Unit and then to the regular room when Noah’s “sugar” (Capillary Blood Glucose or CBG level), as we simply refer to it now at home, had stabilized. When we had checked out of the hospital and returned home with Noah still a diabetic, it dawned on me I must have done something terrible to merit this punishment inflicted on my son. So I changed my prayers to, Dear God, I’m sorry for all my sins. I’m sorry for no longer attending Sunday masses and other holy days of obligation. I’m sorry I haven’t heard confession in years. I’m sorry for whatever it is I did that truly pissed you off! I’m sorry I’m sorry I’m sorry. This pleading for forgiveness so Noah would get well did not last very long either. It didn’t take very long for me to return to my senses. God is not a punishing God. That much I believe in. And even if he were, he would never use an innocent soul to make a tarnished one like mine suffer for my sins. So, I resorted to bargaining. Dear God, take away all my fucking hair (I had developed alopecia just a month into my second pregnancy and just two months before Noah was diagnosed). I know I’ve been bugging you for months now to put a stop to my hair falling out but I take that all back now. You can kill every fucking hair follicle in my body, just take away Noah’s diabetes. MAKE HIM WELL AGAIN! At this point, I was truly truly consumed with anger. I honestly considered offering my soul to the devil, if only i believed in the devil. But I didn’t. And I still don’t. Well, God didn’t take away all my hair either. He took a lot of it, that much I can say. But not all. I just decided to shave the rest of my hair off to bring home a point. I can live without my hair (I didn’t think so before Noah got sick) but I don’t think I can live and stay sane knowing what my son has to deal with for the rest of his life. My husband and I then brought Noah to healing masses. At this point, I was already beyond desperate. I really just wanted to try out anything to make God listen to me. With every mass, I hoped for a miracle but at the same time I feared disappointment. And obviously, every healing mass ended in disappointment. But NOT QUITE.
 |
| The Bald and the Beautiful |
And so these days, when I pray, I pray for FAITH. Faith can move mountains, they say. And I believe it does. I believe FAITH will make Noah tame his diabetes. He will eventually beat it. I believe God will grant Noah a miracle - if not the miracle of healing, then the miracle of living a full life in spite of his condition. I will never understand why Noah got diabetes. And I no longer struggle to. All I ask from Him is Faith: Faith that EVERYTHING will be alright.
And now I can see, everything is beginning to be.
Monday, October 4, 2010
Keeping My Fingers Crossed......
This is promising stuff!!!!
The Faustman Lab at Massachusetts General Hospital, run by Denise L. Faustman, MD, PhD, is moving rapidly through the clinical trial challenge to test and possibly establish a vaccine using a generic drug, Bacillus Calmette-Guérin (BCG) to reverse Type 1 diabetes.
The experiments have moved from mice to a clinical trial in humans, and the testing has passed every research milestone ahead of schedule -- an astonishing feat for any clinical research project. The Phase I safety trial in people with Type 1 diabetes is near completion. The next step is to find, in a Phase II study, the possible dose and frequency of administration of BCG vaccinations that will benefit patients with Type 1 diabetes.
What makes these trials unique? First, unlike other immunosuppressive therapies for autoimmune diseases that harm both healthy and disease-causing T-cells, this treatment appears to provide a way to achieve "targeted removal" of only autoimmune disease-causing cells. BCG works by causing the release of a natural protein in the body called tumor necrosis factor, or TNF. In mice, temporarily elevating TNF levels destroys the autoreactive T-cells, allowing the insulin-producing cells of the pancreas to regenerate and produce insulin. TNF in mice also elevates a good population of T-cells, thus restoring the immune system to near normal. In other words, the treatment literally reverses Type 1 diabetes, at least in a mouse model of diabetes. In laboratory experiments, TNF also destroys the autoreactive cells in human blood samples. TNF does not harm the normal, healthy T-cells that help fight infection, leaving the immune system intact.
The human clinical trials seek to expand these findings in human subjects. The BCG trial is also unique since BCG is a generic drug that has been used widely as a vaccine for more than 80 years in humans. Currently, BCG is used in small doses as a vaccine against tuberculosis, and it is used in larger doses as a bladder cancer therapy. Because it has been used for so long and in so many humans, the safety of this vaccine is well-established. This fact allows the trials to move more quickly through safety studies compared to clinical trials that test new drugs.
With a generic drug, it can move BCG to the public rapidly if the drug is indeed found to be safe and effective in patients with Type 1 diabetes. The phase I safety study is following the enrolled patients over months looking for changes in the T-cells and also testing the reliability of the blood tests for tracking disease-causing T-cells.
The BCG trial is one of the few translational studies in human testing where the animal data showed disease reversal in diabetic mice that had hyperglycemia, not just in mice with normal blood sugars and with a predisposition to diabetes. Therefore, this human trial at Mass General is designed to treat people with established Type 1 diabetes unlike most human testing that focuses only on not yet diabetic patients at risk for the disease or newly diagnosed diabetics with a short time period of high blood sugars.
Dr. Denise Faustman for President of the Universe!!! The study is now in Phase 2 of clinical trials (2 of 4). They hope to complete the trials (and find a cure) by year 2016. Hmmmmm.....that's not so far off. By that time, Noah will just be 8 years old with a lifetime ahead to enjoy donuts, candies, cake, ice cream, cotton candy, chocolates......... Happy thoughts =)
The Faustman Lab at Massachusetts General Hospital, run by Denise L. Faustman, MD, PhD, is moving rapidly through the clinical trial challenge to test and possibly establish a vaccine using a generic drug, Bacillus Calmette-Guérin (BCG) to reverse Type 1 diabetes.
The experiments have moved from mice to a clinical trial in humans, and the testing has passed every research milestone ahead of schedule -- an astonishing feat for any clinical research project. The Phase I safety trial in people with Type 1 diabetes is near completion. The next step is to find, in a Phase II study, the possible dose and frequency of administration of BCG vaccinations that will benefit patients with Type 1 diabetes.
What makes these trials unique? First, unlike other immunosuppressive therapies for autoimmune diseases that harm both healthy and disease-causing T-cells, this treatment appears to provide a way to achieve "targeted removal" of only autoimmune disease-causing cells. BCG works by causing the release of a natural protein in the body called tumor necrosis factor, or TNF. In mice, temporarily elevating TNF levels destroys the autoreactive T-cells, allowing the insulin-producing cells of the pancreas to regenerate and produce insulin. TNF in mice also elevates a good population of T-cells, thus restoring the immune system to near normal. In other words, the treatment literally reverses Type 1 diabetes, at least in a mouse model of diabetes. In laboratory experiments, TNF also destroys the autoreactive cells in human blood samples. TNF does not harm the normal, healthy T-cells that help fight infection, leaving the immune system intact.
The human clinical trials seek to expand these findings in human subjects. The BCG trial is also unique since BCG is a generic drug that has been used widely as a vaccine for more than 80 years in humans. Currently, BCG is used in small doses as a vaccine against tuberculosis, and it is used in larger doses as a bladder cancer therapy. Because it has been used for so long and in so many humans, the safety of this vaccine is well-established. This fact allows the trials to move more quickly through safety studies compared to clinical trials that test new drugs.
With a generic drug, it can move BCG to the public rapidly if the drug is indeed found to be safe and effective in patients with Type 1 diabetes. The phase I safety study is following the enrolled patients over months looking for changes in the T-cells and also testing the reliability of the blood tests for tracking disease-causing T-cells.
The BCG trial is one of the few translational studies in human testing where the animal data showed disease reversal in diabetic mice that had hyperglycemia, not just in mice with normal blood sugars and with a predisposition to diabetes. Therefore, this human trial at Mass General is designed to treat people with established Type 1 diabetes unlike most human testing that focuses only on not yet diabetic patients at risk for the disease or newly diagnosed diabetics with a short time period of high blood sugars.
Dr. Denise Faustman for President of the Universe!!! The study is now in Phase 2 of clinical trials (2 of 4). They hope to complete the trials (and find a cure) by year 2016. Hmmmmm.....that's not so far off. By that time, Noah will just be 8 years old with a lifetime ahead to enjoy donuts, candies, cake, ice cream, cotton candy, chocolates......... Happy thoughts =)
He Said, She Said.....Perspectives from a Diabetic's Parents
When my son Noah, then only 23 months old, was diagnosed with DIABETES eight months ago, I remember it was DISBELIEF that first overcame me - What?!?!?? Why? How? DENIAL came next. It can’t be. Impossible! Not Noah! These feelings of disbelief and denial didn’t last very long though. I shrugged it off quite easily. My mind raced to the next and only question that really mattered - What is the cure? How soon will Noah get well? When I heard the answers, “None” and “Never” respectively to those two questions, DESPAIR engulfed me completely. Suddenly, I couldn’t breathe. And the tears came shamelessly streaming down my face. I’ve never shed so much tears in my 35 years of existence than that fateful night Noah got his life sentence - DIABETES. Type 1 Diabetes to be exact. The type of diabetes whose cure has not yet been found. The type of diabetes that does not get any better. At least not until science finds a cure or God grants Noah a miracle......
He Said:
Its been 8 months since that fateful day. 2,100 lancets, 2,100 test strips, and 840 needles later, we are still trying to come to terms about our 2 year old boy having Type 1 diabetes. I read somewhere that there are 5 stages of grief and that one has to go thru each and every stage before you find peace. In the last seven months, i have gone thru the whole 9 yards of denial, anger,bargaining, depression and finally, acceptance....but not necessarily in that order. Upon discovery of Noah's condition, i went straight to acceptance, convincing myself that i have to accept the situation and move on. From then until now, i have been a roller coaster of emotions yoyoing (is that a valid word?) from one stage to another....then circling back. There are good days when i almost forget about what Noah has to face for the rest of his life. But mostly, its been pretty tough on me and my wife. She, on the other hand, went thru the stages in its proper order. The moment i felt that she was at acceptance, i suppose that gave me the liberty to be where i am right now.
Anger.
Noah's Kikay Kit
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