Wednesday, June 18, 2014

Oliver's Medical Journey with CEP

Oliver's Medical Journey

Raised: $8,355.00
Goal: $10,000.00
Created by
Nichole Zimmardo
476 Friends

Since the day he was born, our baby Oliver has been through more than most of us have in our entire lives. Without warning I was told that Oliver needed to come out early due to compl... more

Updated posted by Nichole Zimmardo 9 months ago
Wow, this past week has been busy to say the least, and it's still not over. Last Tuesday, Oliver spiked a temperature that raised some concern. Now because Oliver has a central line, we were automatically admitted. Turns out he had an infection in his line, which was really scary. They pumped him full of antibiotics and luckily they got the infection under control. Meanwhile, Danny was stuck at home finishing packing and moving our entire house without my help. Thanks to all who came out and helped out with that, we really needed it. Five nights later we were set to go home, our new home, and I had to learn how to administer IV antibiotics through his line. Can't say, I ever thought I would learn how to do that.
Today I received a call. THE call. We finally have a date. Our donor has picked their harvest date and we are set for Chemo on September 23rd. Its finally happening, and I'm not sure how I feel. I'm just ready to get this done and over with. Being in isolation just for those 5 days, gave me a taste of what we're in for, and I'm not excited. Either way, I am so happy that after everything is all said and done, Oliver will be disease free!
Thanks again for all your support. Without you, we would not have the strength to get through this. I will continue to update you as soon as information becomes available. Please continue to share this with your friends and extended family. It's because of you we've got this far.
Updated posted by Nichole Zimmardo 10 months ago
I am in utter awe with all of the support that I receiving. Words can not describe the utter gratitude I have for all of you. Thank you so much.

Oliver is getting closer and closer to transplant, which leaves us with mixed emotions; Excited, anxious, nervous, impatient, scared. They set him up for another liver biopsy next tuesday to make sure his liver is functioning well enough to survive the chemotherapy. After that, then they are going to decide whether they want to use bone marrow or cord blood. If they choose cord blood, Oliver could very well be admitted into transplant in 2 weeks. If they choose bone marrow, it could take up to another month. I know they will choose the best route for him, but I'm just so anxious to get this done and over with.

Please keep your thoughts and prayers coming the way.

Thank you,
Danny, Nikki, Luca & Oliver
Created by Nichole Zimmardo on July 29, 2013

Since the day he was born, our baby Oliver has been through more than most of us have in our entire lives. Without warning I was told that Oliver needed to come out early due to complications with little to no amniotic fluid. The doctors nor us had any idea what we were in store for. At 35 weeks, November 14, 2012 Oliver Douglas Stanek was born. He was at a healthy weight of 5 lbs 5 oz for his age. At first glance we thought nothing was wrong, he looked like a healthy little boy! Who knew that within the last 24 hours, things could take such a dramatic turn.

Oliver was born with renal and liver failure. His bilirubin levels were off the charts and it seemed like the doctors had given up hope. There is nothing worse than the thought of losing your child. It's something that no one dare think about, and yet we were living in it. Thursday to Sunday had to be the longest 4 days of my life. When Sunday came around, it was like a miracle was happening. Oliver started showing signs of progression. Our little baby was healing himself. Words can not explain the joy we felt that day. The doctors were baffled, still trying to figure out what was wrong with him, or why this even happened. We had a few potential diagnoses, but nothing that really made sense.

Finally, after 2 and half months spent in the NICU, he was finally well enough to go home and treated out patient. This was so exciting for us, knowing our little baby was finally going to come home with us! Oliver has been such a joy to be around. His demeanor is so calm and happy, you wouldn't even know he was sick. Since then Oliver has been suffering from frequent blood transfusions and multiple skin lesions. 

After 8 months of scratching our head, something had finally come into light. Oliver was diagnosed with Congenital Erythropoietic Porphyria (CEP); an extremely rare metabolic disorder affecting the production of heme. At first it was hard to believe because this disease is so rare, only 250 reported cases in history have been made. How could this be? CEP causes porphyrins to build up in your bone marrow, and the skin, causing shortening of life of red blood cells and extreme photosensitivity to sunlight and artificial light; a living vampire. In some cases it is known to effect the Liver and Kidneys as well. Things were starting to make sense, since he was severely burned on the whole left side of his body from the phototherapy to decrease his bilirubin. Which at the time, was another mystery. Not mention the fact that he suffered from multiple bone fractures due to vitamin D deficiency. 

Fortunately, due to recent studies, there is a cure for his symptoms through chemotherapy and bone marrow transplant (BMT). This means Oliver can live a normal happy life! This doesn't mean he disease free, it just means he wont be symptomatic. We are currently in the process of BMT and we are looking to be admitted into the hospital in the next month. (Hopefully)

Everyone's support as been overwhelmingly helpful. Without our friends and family, I'm not sure we could have done this. I'm not one to ask for help, but I have come to the realization that our family is in dire need of it. Oliver's medical bills are accumulating. Even with our health insurance we have close to $20,000 in medical bills already and plenty more to come. I don't even want to think of how much this next hospital stay is going to cost. Really, anything helps. Even if its only $5, we would appreciate anything. Please be a part of Oliver's recovery and we will be forever grateful. 

Thank you for taking the time to get to know Oliver, and his journey through his first year of life. Thank you again for your ongoing support, and God bless.

"Remember....Research is the key to your cure!"

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