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Posts Tagged ‘fanconi anemia’

One of the many anomalies my son was born with caused by his Fanconi Anemia was an imperforate anus. On November the 8th my son had surgery to reverse his colostomy. We were scheduled to be in the hospital four days. Well it is eleven days later and we have had many complications with this surgery.

The first stage was a PSARP or “Pull-thru” as it is called. This was done in June to create an opening and pull the rectum through (thus the surgery name). Dilations were the most difficult thing to do to our child to make the rectum muscles open and stregthen to create better continence chances. Once the healing process was complete a colostomy reversal could be done. My son has had this since he was less that 36 hours old. We were excited to do this as it was to create a better quality of life for him in the long run. That brings us to tonight.

His stomach has been very distended and he has had a mass around the surgical site. This was dismissed as an normal abnormality that resolves itself over time. They called it a saroma which is fluid build up around the tissue. It is typically reabsorbed by the body. In my son’s case it worsened. Then today high fevers began causing grave concern on my part. Cultures were done and we are awaiting preliminary results. The Bone Marrow Team is following this develop and reccommending the appropriate treatments. It is feared to be a central line infection. This evening the colorectal team assessed my son’s stomach and were concerned by the appearence of the mass they have so quickly dismissed through the past two weeks, despite our questions and voice of concern. It was so disturbing a CT scan was ordered immeadiately. They moved him straight from CT to the operating room at 11 pm on a Friday Night. Emergency surgery! The findings based on the CT scan is that the bowel is herniated and has pushed up so much that it was protruding outward and causing gas and fluid not to flow appropriately. The surgeons, the best in the world at this surgery in fact the creators and pioneers were uncertain, how long the surgery would take, what they would find and the final action until they opened him up. More than likely they would need to return the colostomy. The very thing we came here 11 days ago to get rid of and move forward. There are feelings of guilt that I know are unfounded. The waiting after such a long whirlwind day is intense. Especially anticipating the unknown outcome and not having any idea how long I must sit here and wait. I am blessed to have such great support from many people whom I have never met! Your support, thoughts, & prayers give me the strength to press on and feel strong! For that I thank you all.

Thanks for reading my point of view,

http://www.twitter.com/fatherpov

Posted with WordPress for BlackBerry.

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Well it has been several weeks since I have had the opportunity to post anything. Things have been, how shall I say this, hectic sounds appropriate. This week alone the basement in our house has flooded twice, once being at 2 am, the washing machine has become possessed and the dishwasher flooding my kitchen – unrelated to the basement floodings – and of course our day-shift nurse missing 4 of the last 7 scheduled shifts has left little time for blogging or anything else.

I am not certain that I have anything of substance to write about today except to tell you that I am alive. I should update everyone on the 12 year old boy I had written about in my last post passed away two weekends ago. This disease, is horrible. Then news came that a second patient passed away the following day. Too many precious lives taken and sadly it will continue to do so until a cure can be found. As fate would have it, five days later the Fanconi Anemia Scientific Symposium began for researchers from around the world. What a timely, yet tragic reminder for this gathering of scientist and doctors to discuss treatment, research, and the path to a cure. Anyone that is connected to this disease in any way will tell you how precious the angels of FA are towards finding a cure.

Thanks for reading my point of view, http://www.twitter.com/fatherpov

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It has been a few weeks since I have posted, but it has been unavoidable. I hope that I am comprehensible tonight. My reason for returning tonight is a 12 year old little boy, who shares the same rare disease as my son is at home tonight with his family in Hospice. With only 3,000 patients worldwide it is devestating when any of them pass. This little boy though is special. He has touched so many with his heart. One of the most thoughtful and selfless of anyone I’ve ever met. Because my son is unique in the eyes of the doctors and researchers because of his anamolies and issues it has been difficult to find anyone elase with this disease similar to him. This little boy, Nicholas was close. He too has had many of the same issues growing up. His Mom comments to me all the time how seeing and hearing things about my son always brings back memories of when Nicholas was growing up. He became a beacon. An older child with this dreadful disease that we could envision our son being. All the things he was able to do that at the moment seem like a fantasy to us. Still it provided hope for what I envisioned my son’s future to be like. Having a quality of life.

Now this beacon is in his last days, maybe hours. His Fanconi Anemia caused an aggresive form of Leukemia with no treatment options available because of a type of lung infection colonization that could not withstand the extreme stress and toll on the body of a Bone Marrow Transplant. This little boy has fought so hard and overcome so many odds for so long and now he lays waiting to be called from this earth. Seems so unfair to have to fight and suffer like that. While I have spent time at my son’s bedside on several occassions uncertain if he would survive, knowing that agony and pain makes it unfathomable to consider KNOWING your child will take his last breathe soon. My heart is heavy for this family. Why do children have to suffer and die? I have quite literally held my son for most of the day. Thankfully, at jsut 18 lbs despite being 2 1/2 years old has its advantages. Especially for times like these. Living with the burden that you are expected to outlive your child is very difficult. While you try to focus on the moment and the positive the thought still remians in the back of the mind. I wrote about that in an earlier post about making tomorrow something to look forward to rather than dread. Days like today however make that task very difficult to achieve. May God grant Nicholas a few more special moments with his family and embrace the family with peace during this very difficult period. I leave you with a story that was shared with me today about facing death.

A sick man turned to his doctor as he was preparing to leave the examination room and said,  ‘Doctor, I am afraid to die. Tell me what lies on the other side.

Very quietly, the doctor said, ‘I don’t know.  ‘You don’t know?  You’re, a Christian man, and don’t know what’s on the other side?’

The doctor was holding the handle of the door. On the other side came a sound of scratching and whining, and as he opened the door, a dog sprang into the room and leaped on him with an eager show of gladness.

Turning to the patient, the doctor said, ‘Did you notice my dog?  He’s never been in this room before.  He didn’t know what was inside.  He knew nothing except that his master was here, and when the door opened, he sprang in without fear.

I know little of what is on the other side of death, but I do know one thing…
I know my Master is there and that is enough.

I wish that children did not have to suffer with disease, sickness, pain, and death. Parents should never have to watch their child die. Please join me as I pray for this child and his family and for ALL families faced with this burden.

Thanks for reading my point of view(with a heavy heart),

http://www.twitter.com/fatherpov

Posted with WordPress for BlackBerry.

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Today was one of those days that are exhausting from start to finish. Speech theory, then occupational therapy, and a meeting with our medical supply company. This was intermingled with a slew of phone calls, both being made and received. All in the name of advocating and providing for my son’s needs, mostly medically. It began last night finding a very hard nodule on my son’s colostomy stoma. While it doesn’t seem to be causing him much issue, at least clinically it is bothersome that this suddenly appeared. There are a few indicators it is annoying him some. The big problem is whenever there seems to be anything to do with his colostomy it turns into a finger pointing, excuse making, pass the buck, frustrating time. (more…)

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Last evening & today have been rather somber. Saturday at around 1pm 6 year old Ashlynn passed away in her mother’s arms from complications of her bone marrow transplant which she need because she had Fanconi Anemia. My son was diagnosed with this terrible disease a year and a half ago. We have already witnessed close to a dozen parents lose their children in that time. Why? You certainly try not to focus on the life-threatening aspect in day to day life. You try to enjoy each day together as a blessing. For my son though his anomalies cause him more issues than most as he has a unique presentation of FA. Researchers have commented how curious they are to learn more about which gene he has. Overall though everytime another FA child earns their wings it is tough to not think about it for a few days. It reminds us that while there have been great strides in the research of this disease which has revealed some significant general cancer findings more still is needed. With the cancer link to FA and the pathways the exist Fanconi Anemia research literally impacts & benefits the greater world population. Please consider donating to research any amount helps. You can find more info about FA and donating on the Fanconi Anemia Research Fund website. Thanks you.

Thanks for reading my point of view,

http://www.twitter.com/fatherpov

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