Posts Tagged ‘rare disease’

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),


Posted with WordPress for BlackBerry.

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This week has been one of the most stressful I have experienced in quite awhile. There was one issue after another spanning the spectrum. I’m not going into details, but one particular issue stood out this week that made me stop for a moment to think. I’d like to begin with sharing this quote.

“Learning to live in
the present moment is
part of the path of joy.”
-Sarah Ban Breathnach

Something that I realized this week is that I try to approach each day with that quote in mind. Having a son with a life-threatening disease which many of it’s patients never make it to adulthood can certainly be overwhelming. You never know when things will take a turn for the worse and what could be your final day. We all live with that to some degree, but when there is a diagnosed cloud looming overhead it makes it seem more realistic. I think many that share terminal diagnosis and life-threatening diseases ignore that cloud. They fight through the pain, suffering and illness and inspire many along the way. While my son can not speak and communicate that to me directly, his actions clearly define this attitude. As a parent I have embraced that as well. I do not dwell on the fact that his life expectancy is potentially shorter. That doesn’t mean that I do not think about it from time to time. I may even shed a few tears over it during those moments. One thing my wife and I decided was we would embrace each day as it’s own and see tomorrow as something to look forward to rather than dread. We take the time to relish our time as a family. While my son has spent half his life in a hospital, we have had some of our fondest memories as a family there. This week I had to spell out the grim reality to get a medical provider to understand my point. They were neglecting to remember the fact that my son’s disease carries with it certain avoidances that have been documented with research to be particularly harmful and potentially hasten the onset of certain issues. While I understood the point the provider was trying to make in respect to the challenges this particular constraint placed, I was equally disturbed that they continued to press the issue as if I was being an overprotective and unreasonable parent. I felt as though they were attempting to sway my stance on their favor by asking me to compromise my values towards my son’s care. This should never happen, but it does when people do not take the time to remember or understand and be open-minded. Maybe by living in the present and embracing today rather than the potential we were misunderstood. The embodiment of this ideal is not meant to make it any less serious or to pretend it does not exist.  However, if I choose to take the time to expose you to the reality it is not appropriate to make me feel as though I am the one in the wrong. As I tell many of my critics, “walk a mile in my shoes. I bet you won’t make it that far.”

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Thanks for reading my point of view,



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