Wednesday, November 28, 2012

Sunday September 30th, 2012

We heard back from Delainey's doctor on Friday night. The margins around her tumor were positive. Which means they found some cancer cells in the area they took out that was surrounding the tumor. At this point I do not know if it was one cancer cell or a thousand, or if it was right next to the tumor or farther out in the margin. But it basically tells us that the barrier around the tumor wasn’t strong enough to hold all the cancer cells in.

Delainey’s oncologist presented her case to the tumor board on Wednesday, where Delainey’s radiologist and many other experts were in attendance. Usually they come up with a unanimous or at least a majority decision of what treatment should be per case or at least what they recommend. However, since sarcomas themselves are rare and even more rare in children (like one in a million-literally) there is not cut and dry treatment protocol (but many opinions!)

Since sarcomas “generally” do not come back in the same spot, they usually re-appear in the lungs or blood, some docs felt it would be best to radiate, to kill off any cancer cells left behind to hopefully prevent them from getting into her blood and going to her lungs.

On the other hand, some docs felt that withholding radiation at this time might be a better choice. In their opinion: since sarcomas “generally” do not come back in the same spot, radiating that area will likely not do much good and that it will not guarantee that it doesn’t come back there or anywhere else. And that the effects of the radiation on Delainey is not worth that chance and since it would be right over her wrist there is a great chance that her growth plates will be damaged and her hand and/or wrist might stop growing altogether.


Our oncologist is working on setting up an appointment with D’s surgeon, D’s radiologist and herself so we can all meet and discuss options, pros, cons, risks, etc. I am sure it will be a lengthy meeting. At this point we need to gather all the information we can & then pray for guidance. Ultimately it comes down to what Adam and I feel is best for our baby girl. We go back on Tuesday the 9th for her surgery re-check. Hopefully, she will be healing fine and her cast can come off & she can get back to being a little more “normal” (take a bath without a bread bag on her arm, play in the sandbox, etc.)

At this time Delainey is doing great. She is not letting her cast slow her down. She has needed very little pain meds and is almost always smiling and laughing. She has started talking more and more now and it is so fun to ‘converse’ with her. Her brothers and sisters love her very much and are great at ‘tending’ to her, they are very concerned for her and it melts my heart when they do things for her. However, we also live in the real world and Delainey gets mad (mad at her cast, mad she can’t grab things fully, mad she can’t be outside in the sandbox) and the kids get cranky and tired of me saying “be careful of her hand” and “look out for Lainey”. They also fight with each other and get on each other nerves, as well as mine and Adams. But this is why we thoroughly enjoy the sweet moments and those are the ones we will treasure.

Adam and I go from stressed and ornery to feeling blessed and thankful. This sort of thing certainly takes a toll on your heart, your mind, your energy, your attitude, your family, your marriage, your work, your housekeeping, your kids, and all other aspects of your life. We are trying to find that balance of what our new normal will be. We were able to have a fun weekend celebrating Max’s 7th birthday! All the kids enjoyed all the cake and ice cream!

We have taken a positive attitude towards this battle we are fighting, we are praying, we are giving it to God and we will do whatever it takes to get this monster out of our babe. Given all that, we do still have bad days. Once our house is put back together and all the tools of the remodel are put away, I think we will breathe slightly easier. But there will always be “something” I am sure.

We are blessed with great family and friends and a Great God. We CAN do this! We love you all!

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