I'm sorry I've been very remiss in posting here. We have been so busy with life!
To give you hope, there is life after cancer. Do not despair. Though we have ongoing medical issues (some related to the original cancer and surgeries and others that are just normal childhood things) we are continuing to trust in God that our daughter will grow up to be a normal happy young woman.
Do not despair. There is hope where there is prayer. If you are feeling down today I encourage you to take a walk, call a friend and just talk. I know from experience how difficult it can be to watch your child going through this difficult time. You wish it were you instead of your child. Know that things will get better in the long run and cherish this time to give of yourself to your child.
Please feel free to drop us a line and share your story as you go through your own personal struggle. Share your strategies for coping as well as your prayer requests!
Friday, December 5, 2008
Wednesday, April 30, 2008
Patience vs Patients
Our family has come to the conclusion that if you are a patient you must have patience. As the saying goes, "the best laid plans of mice and men often go awry". As a parent of a child with cancer this was so often true.
When our clinic moved from one hospital facility to another we would often get to a department such as radiology only to be told we had to return to the previous department, naturally 4 floors and miles away, for some form we required or a specific piece of information. When we returned to the original point of departure we were told, "on no, they don't need that anymore". It was so frustrating at times I would just sit and cry. Of course, they "couldn't call the other department" (I think that would have been too easy!) sometimes I thought that was literally just done to frustrate us. Thus we became advocates for ourselves. Prior to the departure for another department I would have the front desk call the other front desk (no matter how hard she glared at me I waited for this call before I would leave). I reiterated before we left that they had previously required such and such paper and I would not be wasting my time going up and down the stairwells or elevators if it was required, they could fax it.
At first I was met with a hard cold stare. After a few times of this over the course of several weeks and tests, they simply did the proper work prior to our moving on to a new testing area and things were in order.
I was so frustrated that at one point a passing clergy stopped to ask if I was okay and if they could help. After he prayed he went to bat for us and things went a lot smoother.
My advice to any one is to ask questions til you do understand what is going on. Don't be afraid if you upset the receptionist...they should be doing their job and making your job of being supportive to your child much easier. Get the child life/social workers involved, get the clergy involved, what ever and whom ever it takes to accomplish what is needed. If you don't get anywhere with someone, call the front desk and get the supervisors name and go to them. Keep going til you get answers and results.
You are your childs best advocate!
When our clinic moved from one hospital facility to another we would often get to a department such as radiology only to be told we had to return to the previous department, naturally 4 floors and miles away, for some form we required or a specific piece of information. When we returned to the original point of departure we were told, "on no, they don't need that anymore". It was so frustrating at times I would just sit and cry. Of course, they "couldn't call the other department" (I think that would have been too easy!) sometimes I thought that was literally just done to frustrate us. Thus we became advocates for ourselves. Prior to the departure for another department I would have the front desk call the other front desk (no matter how hard she glared at me I waited for this call before I would leave). I reiterated before we left that they had previously required such and such paper and I would not be wasting my time going up and down the stairwells or elevators if it was required, they could fax it.
At first I was met with a hard cold stare. After a few times of this over the course of several weeks and tests, they simply did the proper work prior to our moving on to a new testing area and things were in order.
I was so frustrated that at one point a passing clergy stopped to ask if I was okay and if they could help. After he prayed he went to bat for us and things went a lot smoother.
My advice to any one is to ask questions til you do understand what is going on. Don't be afraid if you upset the receptionist...they should be doing their job and making your job of being supportive to your child much easier. Get the child life/social workers involved, get the clergy involved, what ever and whom ever it takes to accomplish what is needed. If you don't get anywhere with someone, call the front desk and get the supervisors name and go to them. Keep going til you get answers and results.
You are your childs best advocate!
Monday, April 21, 2008
Dealing With Cancer
Dealing with cancer can be a big challenge for anyone. When its your own child its even bigger.
A diagnosis of cancer changed our lives forever. I had a long family history of a rare childhood cancer called Neuroblastoma.
Over 65 years ago my uncle, at age 3 months, died of a "stomach tumor". We now know that this "stomach tumor" was neuroblastoma. The story doesn't end there for my family. I was to lose a cousin at age 4 months, a sister at age 2, my aunt would be diagnosed with it in her early 50's (very rare for an adult) and my own daughter was diagnosed with this dreaded familial disease at age 13 months of age. All would be gone from our lives on this earth forever within a very short time.
Fast forward 18 years and I became pregnant with our latest miracle. A beautiful daughter. During a routine ultrasound when I was 7 months pregnant, there was a "puddle" on the ultrasound. "What is that?" I inquired of the ultrasound tech, She went for the doctor. I again asked "What is that?", only this time I inquired of the doctor. "That is what we are going to talk about she went on." I had shut her out by this time. I knew. My heart stopped for a moment and then I sprang into immediate action.
I called our family doctor and told her our family history in depth. She called a wonderful oncologist she knew. Our daughter was delivered 3 weeks early via C-section. Within an hour of her birth she was having a CAT scan. Within a few hours, we knew she too had Neuroblastoma.
At age 3 weeks we began treatment for our daughter. She would ultimately have 5 major surgeries and 7 rounds of chemotherapy treatment.
I am pleased to report that today, she is a thriving 6 year old in Kindergarten with no signs of the cancer that once threatened to take her very life. We do have to deal with Addison's disease (non functioning or in our case no adrenal glands). But that is nothing compared to the time we spent undergoing chemo and surgeries.
I hope that this blog will help someone else along this journey. Please check back often and feel free to leave your comments or prayer requests.
Together we can help each other through this journey.
A diagnosis of cancer changed our lives forever. I had a long family history of a rare childhood cancer called Neuroblastoma.
Over 65 years ago my uncle, at age 3 months, died of a "stomach tumor". We now know that this "stomach tumor" was neuroblastoma. The story doesn't end there for my family. I was to lose a cousin at age 4 months, a sister at age 2, my aunt would be diagnosed with it in her early 50's (very rare for an adult) and my own daughter was diagnosed with this dreaded familial disease at age 13 months of age. All would be gone from our lives on this earth forever within a very short time.
Fast forward 18 years and I became pregnant with our latest miracle. A beautiful daughter. During a routine ultrasound when I was 7 months pregnant, there was a "puddle" on the ultrasound. "What is that?" I inquired of the ultrasound tech, She went for the doctor. I again asked "What is that?", only this time I inquired of the doctor. "That is what we are going to talk about she went on." I had shut her out by this time. I knew. My heart stopped for a moment and then I sprang into immediate action.
I called our family doctor and told her our family history in depth. She called a wonderful oncologist she knew. Our daughter was delivered 3 weeks early via C-section. Within an hour of her birth she was having a CAT scan. Within a few hours, we knew she too had Neuroblastoma.
At age 3 weeks we began treatment for our daughter. She would ultimately have 5 major surgeries and 7 rounds of chemotherapy treatment.
I am pleased to report that today, she is a thriving 6 year old in Kindergarten with no signs of the cancer that once threatened to take her very life. We do have to deal with Addison's disease (non functioning or in our case no adrenal glands). But that is nothing compared to the time we spent undergoing chemo and surgeries.
I hope that this blog will help someone else along this journey. Please check back often and feel free to leave your comments or prayer requests.
Together we can help each other through this journey.
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