Tonight's picture was taken in January of 2005. Mattie was two and a half years old here and by that point LOVED bath time. Actually bath time with Mattie could last over an hour. It wasn't the washing part that Mattie loved, it was playing in the water and bringing toys into the bathtub that inspired him. When Mattie was a baby and a toddler, he hated water and getting cleaned up. However, in time he adjusted to the process and then of course found a way of making it interesting. Mattie was very focused on vehicles of all kinds and during bath times Mattie would take a few in the tub with him. With Mattie, life was NEVER boring!
Quote of the day: Life's not that simple. Not so easy to move on when the anger you've got is what keeps you going. ~ Rachel Ward
Perhaps tonight's quote applies to me, since I am certainly aware of the anger within me. I will give you an example about anger as it relates to my day today. Depending upon the time of day, I tune into different radio stations. In the morning, I listen to country music. Either you like country music or not, but I suspect mental health professionals are drawn to this music because it tends to talk about emotions, life's adjustments, the dysfunction between people, and loss. This morning the radio station I usually listen to had their St. Jude Children's Research Hospital radiothon. The station does this every year at this time, and I am well aware of this. Each year when I listen to parts of this radiothon, it bothers me. It bothers me for various reasons. Clearly it is an emotional ride to listen to parents discuss their child's cancer battle and their fears. Fears which I understand all too well, but I think what angered me today is how St. Jude's is marketed.
It seems like everyone and his cousin raises money for St. Jude. Certainly it is a remarkable treatment facility that does innovative research and whose research eventually helps kids around the world. However, the hospital is touted as being FREE to its children and families and that it is the BEST place to receive treatment for cancer. BOTH facts may indeed be true, but NOT every child and family can get access to St. Jude. It isn't like you can show up on their doorstep, or call one of their physicians and your child can get treated there!!!! It DOESN'T work that way, it isn't that simple. Which is why I get angered. The radio show's local support base is calling in with pledges ALL DAY supporting St. Jude rather than a local hospital and treatment center. I know this happens because of how this facility is marketed, but God forbid one of my local readers has a child diagnosed with cancer, guess what??? You most likely won't be going to St. Jude. You will be going to Georgetown, Children's, or Fairfax INOVA. WHY????
The simple reason is NOT just anyone can go to St. Jude. You MUST be referred to St. Jude by a physician and once that happens you have to qualify for one of their trials. I repeat you have to be referred by a PHYSICIAN!!! Here is the info right from the St. Jude website, since I want to assure you I am not fabricating this:
A child must also have a referral from a physician or qualified medical professional who can provide St. Jude with medical information. Every study has specific and often different requirements. For this reason, it is important that your child’s doctor contact us. For some of our studies, children can only be accepted if they have not yet begun treatment, so encourage you to have your medical provider contact us as early as possible.
St. Jude has been instrumental in developing and improving many treatments that are now considered the standard therapy for pediatric cancer and other catastrophic diseases. If your child is not eligible for a St. Jude research study, we can help you identify a hospital near you offering an appropriate treatment program and we can provide ongoing consultation with the medical team caring for your child at that hospital.
If all of this did not anger me, then the next several lines of reasoning sent me right over the edge. So much so that I had to turn off the radio. Several parents were interviewed and we could hear their tragic stories about their children. However, each story mentioned that other hospitals did not want to treat their children. That the children had no medical hope and were told to go home basically to die. But then these families got connected with St. Jude and their children are doing fine today and are CURED!!! Now there is another hateful word, because anyone who has experienced cancer KNOWS there is NO cure. Cancer goes into remission and one may have no evidence of disease, but once you have battled cancer, the potential for other threats always exists. What I did not like about today's show was that it implied that the BEST treatment you can get your child is at St. Jude and if you want your child to have a chance at survival you have to go to Tennessee.
So taking that one step further, it would have been impossible for me to not connect the dots and wonder if Mattie would be alive today if one of his physicians referred him to St. Jude. In my heart of hearts, I know the answer is NO, that we did everything possible. But why advertise a hospital in this way!???? To me it isn't accurate and worse in my opinion people in our DC, Virginia, and Maryland area should support local treatment centers, because in the majority of cases this is where families seek services and care.
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