September 6, 2008 (Saturday)

So I think we have of the stuff we need to send Gracie and her mom to the hospital next week. We ran a few errands today and picked up several bottles of disinfectant for hands to place around the home. We do not want Grace to get sick because someone carried around bacteria on their hands. We also picked up a binder/journal to collect and record a medical history for Gracie. We were at the doctor's office this last week and noticed that the family of a small boy had a specific binder to keep all of his medical information to be sure that the parents knew exactly what was going on and so that they could show it to doctors. Since Gracie's list of doctors and procedures has gotten fairy long in the past two weeks we decided that a medical binder would be an excellent idea. We also picked up another cell phone so that I can communicate with my wife while they are away. We also have a lot of scheduling to do and want to be sure that we do not double book an important appointment so invested in a smartphone. Hopefully now any appointments made at home or on the road will be updated on all our calendars and we can avoid future conflicts.
Gracie is still pain free and a really happy little girl. She and I were playing outside yesterday and she was climbing and jumping all over. I was trying to ask her to stop jumping but she really did not understand why. I would say, "Gracie, I wish you wouldn't jump from so high." To which she would look me in the eye and say, "But please daddy? Pleeeeese." So I would try to ensure that I assisted her jumps to prevent too much jarring of the port-a-cath site. It is often hard to think of next week because she is just our wonderful little 2 year old. She gets mad if she cannot be the first to open doors or has to have a bath when she does not want to. She also forgives so easily and is so loving and loyal to her siblings. Pretty typical stuff for a 2 year old. She was playing with some other kids yesterday and it was hard for me to hear the other parents talk of their 2 year old who was playing there and think of how different the next week held in store for the two children. There was no anger, just sadness that such an innocent little girl, who seems so happy and healthy, was about to be given powerful drugs to stop a cancer she does not even realize she has. However, we know that this next week and future chemotherapy treatments will go a long way to saving our Gracie. We are glad for the miracles of modern medicine and are confident that Gracie is getting some of the best care available.

Now, on a completely different note. There was a question or comment about genetic testing for our family. Genetic testing is a critical step in understanding retinoblastoma (particularly bilateral retinoblastoma). This testing will be performed and will hopefully help us to understand if my wife or I are carriers of the disease or not and also if any of our other children have increased chances of having developing retinoblastoma. I am not sure when this testing will be performed but the hospital in Houston (where Gracie is to receive treatments) assures us that this is part of the regular testing for families such as ours. We are happy about that and want to proceed with the testing however we do not know when. This will help to determine the frequency and detail required in future eye examinations for our children, so the sooner the better as far as we are concerned. However, the EUAs scheduled for our children on Monday is still recommended (and will proceed) in order to get an immediate look at their retinas and mitigate any potential problems now before they have time to cause any permanent damage. Now that is at least my understanding of the situation at present for genetic testing and the EUAs on Monday.

Lastly, as a point of clarification on the purpose of the blog. I am pleased that so many people are finding the blog informative and helpful, though the readership has grown bigger then I ever really expected. Getting information to those who want to know more about Gracie is one of the purposes of the blog. Another purpose in writing these things is to help others with similar life situations to better understand the feelings, pressures and challenges that come on a daily basis. As such I have tried to honestly express frustrations, blessings, disappointments, worries, etc that occur in this process. These feelings are unique to me and informed by my specific beliefs and life experiences. I do not apologize for that or pretend that everyone will have the same feelings, however when the initial diagnosis of retinoblastoma occurred, I found some measure of comfort when I heard success stories from others with retinoblastoma. Thus I would feel somewhat ungrateful if I did not honestly share our story with at least one person who could benefit. So please do not misunderstand the blog as any sort of solicitation for sympathy, money or other things. I speak of sadness, worry and financial frustrations only because, during Gracie's battle with cancer, these things do exist and they are part of our life. I like to think of myself as an optimist and would rather not discuss the negative emotions that occur however, in keeping with the purpose of the blog, I have tried and will continue to honestly share the joys and the struggles I experience throughout Gracie's battle.