Sunday, November 29, 2009

National Retinoblastoma Strategy

This may not be of interest to people just checking in on Gracie, but if you happen to be concerned about retinoblastoma this will be extremely nice to know. Canada is the first country in the world to have published a multi disciplinary, multi institutional guideline for care of retinoblastoma throughout the nation. Sorry, as a proud Canadian I couldn't resist bragging about that. It was published in this months Canadian Journal of Ophthalmology and it is absolutely EXCELLENT. It is useful because RB is such a rare cancer that most facilities really don't know how to treat it best and as such children are getting diagnosed much too late and are not receiving the best care available. By creating these standards for care it should help to inform ALL opthalmologists and hospitals of what they need to be doing to treat RB as well as clarifying what criteria indicate that a child really needs to be referred to a more specialized center. By doing this it makes it absolutely clear that there is absolutely no excuse for doctors/facilities with limited RB experience to try and treat patients whose cases are way above their heads just for prides sake, which yes really does happen. It's a very long read so I've only read about half of it so far but I'm really impressed with it. Apparently Kenya is also trying to make a similar national strategy for care. Hopefully the other countries in the world will realize the need for just such a publication. When caring for kids who already have so much to deal with the care needs to be focused on what is in the best interest for the child and not what will bring the most money into the hospital. More collaboration and less competition would be nice if these kids are really going to get the best care possible.

Here is a link to the document if anyone is interested in reading this. You'll definitely want to read it if you are affected by RB.

Monday, November 16, 2009

Grace has another brother!!

OK- so this picture is not about her baby brother but is from her 4 year check up. Everything looks really good but because of the chemo treatments she was behind on her shots and had to get 6 shots. She was not at all impressed when she saw the tray of needles and less impressed when I held her down and let the nurse stick her six times. All was well once she found her prize and sticker. She slept the entire afternoon while Stephanie and Gracie's new little brother got some one on one time!

This is Gracie modeling the dress that Stephanie made her. Gracie will wear it at my sister's wedding in December! She is pretty excited and extremely cute!

Here is Gracie's new brother at one day old. He looks pretty relaxed doesn't he? Gracie's hair is so funny. Usually Stephanie uses lots of gel to keep it from getting out of control but Gracie was gel-less this day. Her glasses are crooked in the picture but that is par for the course with a 4 year old. In fact it has been the standard for my glasses since I was 9 years old despite my mom's insistence that I not play basketball, football, wrestling, etc, etc with them on. A few months ago, I remembered her advice and took them off the play softball but when the game was over someone had stepped on them and they were all mangled up anyway.

Gracie is a huge help at home. She takes care of her new brother so well. She knows exactly what to do if he starts to cry at all. She just says, "Mom, the new born baby is hungry and needs you really really bad! Please come and feed him!"

The baby's eyes have been examined with dilation and they look "perfect." He will also have an exam under anesthesia and genetic testing in early December when Gracie returns for her next appointment. Oh the joys of having a child with a genetic disease.

Life has been crazy in our home with school and work, but we have been richly blessed. We continue to thank you all for your concern, your love and your support.