Join Date: Jan 2008
Location: Reisterstown, Maryland
Friday, August 22, 2008, Patrick, Sicily and I sat in bright green chairs in the waiting room of the pediatric oncology clinic while Dr. Hum and her nurse sat directly across from us. As Dr. Hum began to explain Sicily's diagnosis of bi-lateral Wilm's, Patrick and I both began to think ahead and asked the question, “Should we see about going to St. Jude's?” St. Jude's, as most people know, is synonymous with the known fact that they have treated and saved thousands of children whose lives have been affected by cancer and other life threatening diseases. Their reputation is incredible and well deserved. Upon asking this question, Dr. Hum began to illustrate to us how cancer treatment works in the world of children.
She started by explaining the COG...the Children's Oncology Group. This is a vast international network of doctors who participate together in a clinical trial cooperative. Their mission is to study childhood cancers and share their findings and discoveries with one another. What this boils down to is simply this...what treatment plan St. Jude's would offer for Sicily in the beginning was going to be the exact same treatment plan that The Children's Hospital at St. Francis in Tulsa would be able to offer us. Why would we need to travel five hours away when we could receive the same thing twenty-five minutes away? Pediatric cancer treatment follows protocols that are developed through research hospitals, one, among many, is St. Jude's.
We hit our first brick wall when we were told that there were no open trials...no current studies being performed on Wilm's tumor when Sicily was diagnosed, so the treatment we would receive would be one of the protocols that was established through research years and years ago. That was when we made our first decision to stay close to home if we were going to get the same treatment plan. We could maintain our family life as much as possible. What became discerning to us, especially later down the road when Sicily's pathology came back as “worst case scenario,” was that Wilm's tumor is considered a success story. I will agree that from what I researched, the high statistical chance of survival compared to what was reported decades ago is numerically impressive. This disease has a good chance of responding to present day treatments, but it is still a very long way from being considered curable for all. So this explains why it is not currently being studied. I hope this is all making a little bit of sense!
Wilm's needs continued studies because children are still dying from it. I won't go too much deeper into the different pathologies that Wilm's carries, but Sicily's was indeed listed as the worst. What is sad and heartbreaking is that children who “should have” responded to treatment because their pathology was of the lesser severe type, are still dying. I know of two more such deaths since Sicily's passing in mid-March. I have to say that I seriously struggle with this. And this is also where I have to explain, again, why we did not seek treatment at St. Jude's.
When Sicily's cancer spread to multiple organs and the reality that her life was in serious jeopardy...truly terminal, but no parent wants to give up when they are told that...we looked to St. Jude's for help in the aspect of a trial or study. Everyone has heard the statement made in their commercials when they say, “no child is ever turned away...” but many don't really pay much attention to the remainder of that statement that says, “due to inability to pay.” I think that is so awesome that they are able to do that as it has helped a multitude of families deal with this crisis, which bares down heavily on finances. But the honest fact is that children are turned away BECAUSE they are not currently studying their particular type of cancer...such as Sicily's type of cancer. We would have packed our bags in an hour if they had said they could help us try and save her life. But since a study was not in progress, they could not offer us anything.
I am in no way trying to blemish their reputation as I firmly believe in what they do, but felt compelled to explain why we did not, or could not, go there. I know personally that they have performed surgery on other Wilm's kiddos and these families had nothing but awesome things to say. Surgery was not an option for Sicily anymore once the cancer began to spread like wildfire. I pray that those who support St. Jude continue to do so! I am still in the learning phase of how non-profit cancer foundations work and know only the bare minimum, but know enough to still want to throw my support behind one in particular. Briefly, I will attempt to explain my understanding of them.
Like many foundations that are set up as not-for- profit (501(c)3 status), they allocate funds through grants. There are already dozens of foundations operating now that are appropriating money to various study ventures. Some “favor” certain types of cancers over others, but I think as a whole they still support whatever comes their way.
The Pablove Foundation will grant money, as well, to various cancer research through a scientific advisory board that will be led by a very reputable pediatric oncology physician. My desire to be on this bandwagon that is just beginning to enter the parade is because Pablo passed away from the exact same rare diagnosis as Sicily. There, immediately, forms a bond. I know this foundation will have an impact down the road on research for ALL aspects of pediatric cancer, including Wilm's tumor. Where other foundations may pass or overlook someone wanting to study Wilm's as it is considered “a success,” the Pablove Foundation will do it's best to support those efforts. They are not “cancer specific” as the Susan G. Komen foundation is for breast cancer, but they will be “pediatric specific.” Again, I hope that makes some sort of sense. I want to re-iterate that I am still “pro-St. Jude's,” but until they are able to help another family faced with the crisis that we were, I need to pour my heart and soul into something I believe wants to make an attempt at funding anaplastic Wilm's tumor and finding better and more successful treatments!
“Whew!” This post has challenged my ADD! I hope I made some sense and did not add to the confusion or boar everyone completely to tears with too much information. Thanks for continuing to let me unload some of my baggage. I always feel a sense of relief when I am able to write. Good 'ole keyboard therapy!
We will soon be venturing out on a little summer excursion and enjoying some strong family bonding time. I'm looking forward to it and feel it will assist in our healing process. I'm very proud of our kids lately, especially today...they are getting along very nicely and actually enjoying each others company. It's times like this when we really notice how much Sicily liked to stir things up. I sure miss my little instigator...my little “pot stir-er!” And daddy still unbuckles his seat belt as he enters our neighborhood...just for old time sake! ; )
All my love,