I created this blog so that I could have a place to share my journey, which include struggles and heartwrenching choices, being in a very dark place as a DIPG parent. People who have not experienced having a terminally child cannot possibly relate to the helplessness and hopelessness that a parent feels. I initially thought my blog would be a place where friends in my life would be able to receive updates on Maryn and provide feedback in a loving, encouraging, supportive way.
Unfortunately, people have taken to disparaging myself and my ex-husband and my choices. It's no secret that our relationship has been strained to say the least during our divorce; regardless, I have a 13 year old daughter who regularly reads my blog, and I find it highly inappropriate that people are bashing both of her parents.
My intent is to surround myself and my children with a community of friends who support me in my decisions, whatever they may be, whether they agree with them or not. This is not an easy road to travel by any means.
Because of the negative comments I am receiving on my blog, I have decided to grant access to only those people whom I know and trust. I apologize that not everyone will be able to read future updates on Maryn's progress and how our journey is going, but this is difficult enough without all the negativity arising from some of the content I am posting. This is life, this is real and I'm not going to fake it for anyone. When I am angry, that's what I am, when I am sad, that's what I am, when I am happy, that's what I am.
I don't need to hear negative comments that I have no "tact or reason", etc., etc., etc., Like I said, until you have walked in my shoes, please don't judge. Even if you think Burzynski is a "scam", why would you share such negativity with me? I am walking through the darkest hour of my life and I need hope.
Please feel free to email me and if I know you and trust you, I will give you access to my blog.
annette.cella67@gmail.com
Oh, by the way, I never sent (and don't plan to) the letter but it did feel good to write it and post it here.
Wednesday, November 11, 2009
Letter to News Media
I have decided that after everything that has happened, it would be in the best interest of the public and children who may follow in Maryn's footsteps if I send this letter.
Dear _________,
A few months ago you did a report on my daughter, Maryn Cella. She was diagnosed with an inoperable brain tumor in June of this year. We were given the prognosis that she has 9 to 12 months to live. We were, and still are, raising money to get her to the Burzynski Clinic in Houston, Texas. At the time her oncologist was in full support of us seeking "alternative" treatments because conventional medicine provided no other options for us. He stated that he was in full cooperation and that he would do "whatever needed to be done" to assist in this process.
We are scheduled to leave for the clinic this Friday. Part of her treatment in Houston requires that a Broviac line be placed in her chest so that she may receive the alternative chemotherapy treatment. The Burzynski Clinic says that it is standard practice for the patients to have the line inserted at the hospital in their hometown before going to Houston for treatment. They also stated that it is a rare occurrence when a patient has a difficult time getting this done at their local hospital.
The clinic also informed me that if I do have to have to procedure done in Texas, their local hospital requires payment in full before proceeding with surgery. The doctor was not sure of the exact cost but said it would be in the range of approximately $3,000. She also said that if Maryn has to have the surgery done in Texas, she will have to have another MRI because FDA restrictions require an MRI to be taken within 2 weeks prior to beginning the clinical trial. All of this would further delay her treatment.
I have been getting the run around from the hospital for 3 weeks now. As of yesterday, the hospital still refused to put the line in for my daughter. Around 4:30pm, in an act of final desperation, I notified her doctor that I would be contacting the media to make the public aware of the events that have occurred over the past few weeks. Ten minutes later I had the ok that the procedure would be done Thursday morning.
I spoke with the hospital today and was informed that Maryn's surgery would start at 12:45 pm tomorrow. I received a call this evening that said Maryn is to check in at 12:45 with her surgery at 2:15pm tomorrow. Because of the late surgery time, I am now in the difficult position of deciding whether or not to have my daughter fly out Friday morning. This would put her on a plane little more than 12 hours after surgery, which is worrisome for me. If the hospital had honored the request I placed 3 weeks ago, we would not be having an issue this late in the game. I feel as though the hospital and her doctor have not had my daughter's best interests in mind.
I am frustrated that my daughter has to endure more than she should have to because of red tape and bureaucracy. I am sure that my daughter is not the only patient who has had this experience; I believe she is the face of many children who are terminally ill, told by the doctors there is no hope. When parents do find hope, the doctors and the hospital drag their feet in being cooperative with providing the care necessary to allow pursuit of "alternative" treatments found. These children are terminally ill, for some, this is their last chance for hope. For my daughter, her tumor is progressing and we don't have much time to find a miracle. Children and their parents should not have to endure this type of treatment from the medical establishment. Dealing with the illness is difficult enough.
Hoping you can help in some way.
Annette Cella
Dear _________,
A few months ago you did a report on my daughter, Maryn Cella. She was diagnosed with an inoperable brain tumor in June of this year. We were given the prognosis that she has 9 to 12 months to live. We were, and still are, raising money to get her to the Burzynski Clinic in Houston, Texas. At the time her oncologist was in full support of us seeking "alternative" treatments because conventional medicine provided no other options for us. He stated that he was in full cooperation and that he would do "whatever needed to be done" to assist in this process.
We are scheduled to leave for the clinic this Friday. Part of her treatment in Houston requires that a Broviac line be placed in her chest so that she may receive the alternative chemotherapy treatment. The Burzynski Clinic says that it is standard practice for the patients to have the line inserted at the hospital in their hometown before going to Houston for treatment. They also stated that it is a rare occurrence when a patient has a difficult time getting this done at their local hospital.
The clinic also informed me that if I do have to have to procedure done in Texas, their local hospital requires payment in full before proceeding with surgery. The doctor was not sure of the exact cost but said it would be in the range of approximately $3,000. She also said that if Maryn has to have the surgery done in Texas, she will have to have another MRI because FDA restrictions require an MRI to be taken within 2 weeks prior to beginning the clinical trial. All of this would further delay her treatment.
I have been getting the run around from the hospital for 3 weeks now. As of yesterday, the hospital still refused to put the line in for my daughter. Around 4:30pm, in an act of final desperation, I notified her doctor that I would be contacting the media to make the public aware of the events that have occurred over the past few weeks. Ten minutes later I had the ok that the procedure would be done Thursday morning.
I spoke with the hospital today and was informed that Maryn's surgery would start at 12:45 pm tomorrow. I received a call this evening that said Maryn is to check in at 12:45 with her surgery at 2:15pm tomorrow. Because of the late surgery time, I am now in the difficult position of deciding whether or not to have my daughter fly out Friday morning. This would put her on a plane little more than 12 hours after surgery, which is worrisome for me. If the hospital had honored the request I placed 3 weeks ago, we would not be having an issue this late in the game. I feel as though the hospital and her doctor have not had my daughter's best interests in mind.
I am frustrated that my daughter has to endure more than she should have to because of red tape and bureaucracy. I am sure that my daughter is not the only patient who has had this experience; I believe she is the face of many children who are terminally ill, told by the doctors there is no hope. When parents do find hope, the doctors and the hospital drag their feet in being cooperative with providing the care necessary to allow pursuit of "alternative" treatments found. These children are terminally ill, for some, this is their last chance for hope. For my daughter, her tumor is progressing and we don't have much time to find a miracle. Children and their parents should not have to endure this type of treatment from the medical establishment. Dealing with the illness is difficult enough.
Hoping you can help in some way.
Annette Cella
Another Change
I just got a call from the hospital. Maryn's check in is at 12:45 not her surgery. She is scheduled for surgery at 2:15pm. There is no way that I can feel good about putting her on a plane little more than 12 hours after surgery. I don't know if Continental can reschedule our flight for possibly Saturday night or Sunday morning, but I need to call and ask. Wish me luck!
I won't go on another rant about how this all could have been prevented if it were not for people who are supposed to have her best interests at heart interfering with the process.
I won't go on another rant about how this all could have been prevented if it were not for people who are supposed to have her best interests at heart interfering with the process.
Frustrated
I am frustrated, angry and stressed beyond belief with this whole process of getting Maryn's line inserted. She is scheduled tomorrow at 12:45pm, which gives her less than 24 hour recovery before she gets on a plane to go to Texas Friday morning. If I could sue someone right now I would, I'm so angry. I requested that this procedure be done weeks ago. I called the surgery scheduling line and, of course, they cannot change her surgery time for any earlier and said if I want it done tomorrow that's the time I have to take. Aargh!
I have already been struggling today with the thought that I am responsible for putting my daughter through this traumatic process. I know in my heart that either way, she is going to suffer from the effects of this tumor. I feel this intense need to try and save her. I am only 42 years old, if I live until the age of 80, that means I get to spend the next 40 years of my life with the daily reminder that I loved and lost one of the greatest loves of my life, my child. I have to know in my heart that I did everything I could possibly do to save her. Even though I know this has to be done, it is still a heartbreaking, gut wrenching reminder of the reality of Maryn's life.
This entire medical process has been time consuming and extremely frustrating. Somewhere in all of this, I am supposed to find time to spend and be happy with her. I feel I am being robbed of that by fighting with the medical establishment to get things done; it is hard enough as it is.
My question is, how does one find the time to experience joy and love a child while inner emotions are competing with the desire to save a life (and what that involves), yet wanting to bring nothing but happiness to the one they love and also dealing with the overwhelming sadness of what the next step is in this process and what the ultimate outcome may be.
Time is definitely too short for all that I need to get done. All my efforts may be in vain, at that point I will have to believe in the fact that I will get to do nothing but play with and love her when we meet again someday.
I have already been struggling today with the thought that I am responsible for putting my daughter through this traumatic process. I know in my heart that either way, she is going to suffer from the effects of this tumor. I feel this intense need to try and save her. I am only 42 years old, if I live until the age of 80, that means I get to spend the next 40 years of my life with the daily reminder that I loved and lost one of the greatest loves of my life, my child. I have to know in my heart that I did everything I could possibly do to save her. Even though I know this has to be done, it is still a heartbreaking, gut wrenching reminder of the reality of Maryn's life.
This entire medical process has been time consuming and extremely frustrating. Somewhere in all of this, I am supposed to find time to spend and be happy with her. I feel I am being robbed of that by fighting with the medical establishment to get things done; it is hard enough as it is.
My question is, how does one find the time to experience joy and love a child while inner emotions are competing with the desire to save a life (and what that involves), yet wanting to bring nothing but happiness to the one they love and also dealing with the overwhelming sadness of what the next step is in this process and what the ultimate outcome may be.
Time is definitely too short for all that I need to get done. All my efforts may be in vain, at that point I will have to believe in the fact that I will get to do nothing but play with and love her when we meet again someday.
My Life
I'm feeling stressed out and frustrated today over many things of which, most importantly, is my daughter's health. God, I just don't want this be my life.
Tuesday, November 10, 2009
Broviac Line Back On
I spoke with Maryn's oncologist again, after an intense discussion and a few other phone calls. It has been determined that the Broviac line will be placed before we leave.
Broviac Line Surgery Canceled
I just spoke with the pediatric surgeon regarding Maryn's treatment. She said she just spoke with hospital Quality Management and they told her the oncologist said that the patient's parents had decided not to go through with the surgery. I have called Maryn's oncologist several times and he does not return my calls. People in his office are less than helpful when I call. I am very frustrated.
I spoke with the doctor at Burzynski Clinic. We will have to go to a hospital in Houston to have it done. They will require payment for the procedure up front. She is not exactly sure how much it will cost, but estimates about $3,000. In addition, because Maryn's oncologist refuses to place the order to have the procedure done, Maryn will have to undergo ANOTHER MRI while she is there. This is going to be more stressful for her, more expensive for us and the insurance company. I see now how it is that children who are terminally do not survive; access to appropriate care is delayed even if the child has adequate medical insurance. Bureaucracy and red tape get in the way of saving lives.
My question here is: who works for who? I thought the doctors worked for the patients, apparently not. Does anybody want to the local media for me and see what they can get done ASAP? The surgeon is willing to do it, it's the oncologist standing in the way.
I spoke with the doctor at Burzynski Clinic. We will have to go to a hospital in Houston to have it done. They will require payment for the procedure up front. She is not exactly sure how much it will cost, but estimates about $3,000. In addition, because Maryn's oncologist refuses to place the order to have the procedure done, Maryn will have to undergo ANOTHER MRI while she is there. This is going to be more stressful for her, more expensive for us and the insurance company. I see now how it is that children who are terminally do not survive; access to appropriate care is delayed even if the child has adequate medical insurance. Bureaucracy and red tape get in the way of saving lives.
My question here is: who works for who? I thought the doctors worked for the patients, apparently not. Does anybody want to the local media for me and see what they can get done ASAP? The surgeon is willing to do it, it's the oncologist standing in the way.
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