Chemo Aftermath and The World's Best Sister

Gracie just hasn't been doing as well after this round of chemo. It's not that she's doing horribly, I'd still say she's doing quite well with all things considered. It's just that she's acting more like you'd expect someone to after such an ordeal. She's done so well in the weeks following chemo in the past (once the pain of the injection was gone after round 2) that we just figured it would be all smooth sailing. She continues to do well, but we definitely have a grumpier version of the cheerful little girl we know. One time she was acting particularly grumpy, but denied any pain or nausea. I decided to give her some zofran (for nausea) any way - just in case. Wouldn't you know it a half an hour later our chipper little Gracie returned to us. After that experience we decided to give her some zofran more regularly. It seems she just doesn't know how to express what she's feeling and as such she just acts grouchy. 

This week my sister gave me a wonderful idea. Throughout the past months some days have been better for me than others. There have been a couple of nights when it was very late and I just kind of break down. It doesn't happen too often, but it has on occasion. Usually James and I can talk and he gives me a lot of strength. However, there has been a time or two when it's happened and James either hasn't been home or he's already asleep. Thank heavens I have the best sister in the whole world (and a rather understanding brother in law). On those nights, when it's very late (even in Idaho where she lives) I can call her up and we can just cry together. I only have the one sister. We always shared a room. Even in university we were roommates and shared a room. It made for A LOT of fights, but I can't imagine feeling closer to a sister than I do to her. We are so much a like, we think on the same lines. As such sometimes she's just the absolutely best person to talk to.  A couple of nights ago my sister and I had one of these late night conversations. The conversation we had is going to sound very negative, and you'll have to forgive me for that. I choose to be optimistic about our future and know that I am one of the most blessed people to ever walk the face of this earth (I've got James!!!!...and 4 beautiful children!!!!!), but every now and then I fall into despair - especially when I'm tired. I was lamenting about all the uncertainties ahead of us, all the difficulties that cancer has brought into our life. I was lamenting about the decreasing odds of being able to save her eye. I was wondering if we need to enucleate that eye if she'll understand how hard that decision was for us? Will she know we only did what was best for her? How many prayers were uttered and tears were shed during those days?  I was lamenting that cancer will always be a part of our life now. The only thing that will take it away from us is if they can find a 100% cure for every type of cancer that exists. Gracie is the point mutation for a genetic cancer. So she didn't inherit it from anyone (we think), but the mutation is in every cell of her body and she can pass it on. Also she has a 51% chance of developing future cancers herself. So even if we were to remove the cancer from both of her eyes and it was to never come back there she has a high risk for developing bone cancer, skin cancer, and really any of the sarcomas as well as an increased risk for any other type of cancer. I watch her run around and have so much fun and it's hard to think that she will never escape cancer. Each of her children has a 50% chance of carrying this same mutation. She'll have to have cancer testing done on each of her babies, immediately after birth if not in utero. She'll most likely have to go through this same ordeal with her children. I will with my grandchildren. So much health that I have just taken for granted in the past will no longer be able to be taken for granted. Our lives will always include oncologists. 

As I was crying to my sister she helped me remember some things. There is still a 49% chance that Gracie will never have cancer again. Six months ago I wouldn't have been impressed with these stats, but it's a whole lot better than a lot of kids have so we'll readily embrace that. Also Gracie will be able to help her children better than we are because she's gone through it. She'll truly know what it is like. She'll be able to provide strength for her children that we're not able to because we lack that experience. Now we're coming to my sisters wonderful idea. She suggested that we print off the blog so that Gracie would have a record of our experiences. Because although she might understand what it's like to be a child with cancer, we understand what it's like to be parents of a child with cancer. James and I will be there to offer our support and our records can help her too. She will know exactly how much thought, prayers and even tears went into every decision we made on her behalf.  Hopefully she'll beat the odds and never have to deal with her children having cancer, but if not we'll be prepared. So I spent some time moving the blog into a word document that eventually when things have settled down we can have printed and made into a book. 

So we have some more challenges in our life than we did before. I could think of so much worse than this (I have a rather vivid imagination). Reading through our blog and all the comments on it reminded me of how many people love us and pray for us. We have more than most people could even imagine. We are so grateful for this. We are so very, very blessed. Gracie is very blessed. And hopefully her sisters will be as good to her as mine is to me. Thank you Kir.

Stephanie