Moving from CaringBridge to this Blog

The last couple of weeks have been primarily good for us. Mackenna is doing really well at Wright School. She is scheduled to graduate on 9/25 and she will begin a Durant Road Middle School (which is a year round, that is, 9 weeks on, 3 weeks off program) on 9/29. She has already taken a tour with me and is scheduled to spend the day there on Monday with one of her Wright School teachers.

Vince and I joined the Hearts for Hope Society at the Ronald McDonald House of Durham through a contribution we made to help them build a bigger home. We feel strongly that Duke needs to continue to improve the psychological and emotional support they provide the children and their families that go there to be treated for cancer. But we have also recently recognized that the peer support that takes place at the Ronald McDonald house in Durham for families that don’t live locally is filling a portion of that gap.

Vince and I both feel that becoming involved in helping other families is important to us. Vince is in the process of registering to become a Ronald McDonald House volunteer. It is not clear yet what his role will be but he did spend a few hours at the house talking to families and I know he found his time there fulfilling.

I have recently had a lengthy discussion with Lynn Harter. She is the Co-Producer of the The Art of the Possible: Stories of Pediatric Cancer Care which is the documentary project that we are so excited about because it chronicles innovative approaches to pediatric cancer care. So many of you have supported this project through your generous contributions to the Ohio State University after Colleen died these donations helped them get as far as they have will help them continue working.

They have recently posted a ten minute rough-cut of their documentary (that will be one hour when done) on a website. Lynn and her colleagues have asked to come meet Vince and I in October and interview us for the documentary. She feels that our unique perspective of three medical institutions (UNC, MD Anderson, and Duke) which all were excellent medical facilities some had more challenges than others, We will not use facility names, of course, but discuss how not all facilities are like MDACC and not all doctors are like Dr. Pete Anderson since the documentary is so centered on him, hopefully adding a unique perspective.

The goal of the documentary is to educate hospitals and medical students and other pediatric care teams. This is an area that is very close to my heart. I have recently started using the word activism. I believe that I am going to become an activist in this area. I have even start considering spearheading a Duke fundraiser if that is what it will take to bring them to the level of care that is needed. Please take a minute to look at the rough-cut and remember there is more work to do and it is only going to get better! (Note: You may need Quicktime Player installed on your computer and it takes a few minutes to download the video.)

Sadly, this week, our family found out that yet another child that we know has been touch by this awful disease. A girl that was in Mackenna’s Y-Princess tribe was diagnosed with Myelodysplastic Syndrome (MDS) and Monosomy (a type of pre-leukemia) in April and is currently being treated by Duke. This is the third child within a year that I personally know that is being challenged with cancer. I can’t help but think that God wants me to get involved in making changes.

Vince and I met with Colleen’s Duke Oncologist last week for coffee and then I went to UNC on Tuesday. I have heard from several people that most parents who lose children to cancer don’t usually come back to the doctors or the hospitals. It doesn’t bother me. I was fine during the visits. I like talking about her with all of the people that cared for her so deeply during such a rough time in our lives. It is therapeutic.

My deep waves of sorrow come from three sources these days.

1. I miss Colleen deeply. I miss having her as a part of my daily life. I miss her silliness and her “go with the flow, be happy about everything attitude”. I hate the fact that I am now the mother of a child instead of children. Vocabulary that I cannot get used to in my sentences.
2. We live in a horribly broken world and with each passing year, more and more children are suffering from terrible diseases that they don’t deserve because of it. I keep thinking of that old commercial that was on when I was kid. It was an older American Indian looking over barren land because we didn’t take care of it.
3. I think about the number of children, like Colleen and William and Katie and all of the others that I don’t know who are told that they are critically ill or even worse, that they are going to die soon and there is no therapist or psychologist to help them process all of the thoughts that they are struggling with and they don’t want to talk to their parents because they are protecting them because they love them so much.

Since these are the reasons for my sorrow…. This is why I find my self awakening to a role of activism. Not sure where it will take me or how fast since I will be going back to work soon but my vision is starting to become clear.

I have decided to move off of the CaringBridge site and onto this blog. The CaringBridge site belongs to Colleen and this new chapter is ours with Colleen never far from our minds and hearts. So, please check out my new blog, called Striving for Grace. Not much on here now but there will be more in the future as I don’t see myself updating the caringbridge site in the future but using this blog for future updates on my progress.

Thank you to everyone who has shared their love and prayers and support to get us this far.

Striving for Grace,

Diane

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