5 month anniversary

Well, five months ago, Gracie was officially diagnosed with retinoblastoma. It was a week after we had visited with our friend and ophthalmologist, who had been the first to ever tell me about the disease. The time has gone by so fast in some ways and so slow in others. I have learned a lot about cancer, blood counts, insurance company practices, hospitals, medications, myself, the resilience of young children, etc. The list could go on forever. We have tried to be true to the purposes of our blog and share our experiences honestly and somewhat openly. We have heard from many who have found the blog and it has helped them, even in some small way. We are grateful for that, relatively early, feedback from some. It helps me to keep going. I have not been the best blogger of recent, but Stephanie has really helped to pick up the slack.

So as I look back over the past five months, I think that it has been a whole lot easier than I ever imagined. I thought that Gracie would hurt more. I thought there would be more vomiting, less sleep and more crying from and because of Gracie. I even thought there would be more time thinking constantly about Gracie then there has been. I told a friend once that having a child fighting cancer is kind of like putting a child in ballet. You have lots of practices you have to attend, money you have to spend and time you need to make to get the right equipment (or medicine, blood products, etc.). Then you hope that everything turns out beautifully at the end.

On the other hand, the past five months have been a lot harder than I could have ever imagined. Preparing to give Gracie to a doctor, where you know that she will come back in considerable pain is hard. Waiting in small rooms near a surgical unit for word from your doctor about whether cancer is spreading or shrinking is hard. Getting bad news in those rooms is hard. Speaking and thinking about the possible procedures and surgeries that your child may or may not need is hard. Five months ago, I remember thinking to myself that there were lots of things that I would need to do in order to help Gracie and my family but that there were also lots of things that I needed to do in order to keep up at school and work. I thought about how I could just make sure to focus on one thing at a time so that everything could get accomplished. I was sure that it would not be that hard. I reasoned that there had been many times in the past where I had various obligations and I had made it through most of that alright, so why not now. Well, it was a lot harder than I ever thought. I grossly underestimated how difficult it would be to concentrate the couple days prior to or the few days following chemo. It was not hard to mow the lawn or do some school assignment but I found myself unable to focus when I needed to concentrate on studies or to integrate ideas and concepts that were new to me. In many ways it was frustrating for me and much harder than I had thought. I am not sure that I have gotten any better but I am trying. 

I guess, looking back, I really did not know what to expect five months ago. Very few things that I expected happened. However, I have been so blessed to see how much people care for one another. I have been able to observe how much people love and care for my little Gracie. I have found peace and comfort in knowing that thought and prayers were constantly on Gracie and our family. I have seen miracles, big and small. I have had my faith and friendships strengthened. I have learned from Gracie how be happy even when life is not perfect. 

I thought I should share one story of Gracie while I was thinking about it. As you know she went to have her blood counts checked twice this week. Well, she really does not like getting poked and tells the blood techs as much each time. However, she is always excited to go talk to her friends there. She knows their names and they know hers. Apparently there are not a lot of children getting their blood checked on a regular basis at this location and we go early each time so have the same people. I know Stephanie had a bad experience the first couple of times getting blood but since then Gracie and I have not had any problems. The staff is wonderful and friendly and they are quick and efficient with getting the needed blood. I could not ask for any better people to help her. Gracie is a big hit it seems when she bounces into the office. She marches right up to the desk and "signs" in. Really she just scribbles on the next available line on the sign up sheet but they know who it is. Then she talks to the staff about their fish, or Christmas, or DisneyWorld or whatever she or they want to talk about.

So on Wednesday, Gracie made sure to bring her money (she keeps 50 cents in a little plastic bucket). She was so excited to show her friends her money and even to give some to them. It is pretty cute to see her run up and show it off to everyone. Of course, the money rattles in the container and she regularly spilled the money on the floor and worried that she would never find it all.

Anyway, she was about to get her blood drawn and had two techs in the room with her and told them, "I brought some money for my friends!" They seemed pleased but refused the money. One of her friends dropped another coin into her collection and Gracie was pretty impressed by that! Anyway, they got some blood without much protest and made sure she got a pink bandage and three pooh stickers (after some not so subtle reminders). She said thanks to all her friends and bounced back out to the car.

To me our little trip just personified Gracie's attitude amidst everything she has been through over the past five months. She usually knows that there will be some pain but always bounces in with a smile, leaves with a smile and wants to make her friends (aka everyone) happy along the way. I think the world would be a whole lot better if there were more people going around trying to do that. She sure makes my world a whole lot better having her here!

As always, thank you for your love and concern. We continue to pray for Gracie to keep both her eyes and that the tumors will not grow or spread! Go Gracie go!