I've had a bit of an overwhelming sort of day... I finally just sat down and crocheted as if my life depended on it. (You should see the lovely little throw pillows sprinkled on our couch!) It was nice to have my hands busy and let my mind sort of rest a bit.
Today we began the process of making plans for the next month. We have spoken with Ellie's doctor and have been carefully weighing the options in front of us, and have decided to take Ethan and Ellie out to Montana for about a month once radiation ends. As of the latest tests (before the "light" chemo) Ellie was not yet completely free from Neuroblastoma. Because of that, she will still need surgery and more treatment. It has been over nine months now of treatments for Ellie (with some serious bumps along the way) and we believe that her body needs to rest. Given how hard the last cycle of chemo hit Ellie, and how low her weight is, we feel that she needs some time without treatment... just to eat and get stronger. A huge bonus will be spending some quality time with Ethan. Another wonderful piece of the puzzle will be finally seeing Loretta in person. She has dedicated nearly every waking moment of the past 9 plus months helping us from afar. We cannot wait to see her face to face!
I guess I'm dropping this news on you kind of suddenly, but truth be told we have been thinking about this for a while now. It has been complicated - there have been so many variables - so we have been thinking and waiting and praying... And now we just know... the time is now. For Neuroblastoma patients the focus is always getting their bodies free from this tricky and often treatment-resistent cancer, but a lesser known - but often just as difficult - struggle is getting the patients through the sledgehammer style treatments alive. Add to that Ellie's sensitivities and propensity to develop all of the rare side effects... well, you get the idea.
I realized while writing this that I have been in a down kind of mood (thus the maniacal crocheting spree). I really do believe that we are making the best possible decision for Ellie - there is no doubt in our minds that it is right. It's just that we are at the stage in the game where each good desicion has a potentially worse down side. These are the kinds of choices parents never want to have to make. But we really do trust that God's hand is in this. We don't need to know what's ahead for Ellie to know that this is the step that God would have us take for her right now.
And so Michael and Kathy will be arriving in New York at the end of next week with our little buddy in tow! We are so excited. We will get to see Michael and Kathy for the first time in over three months and we'll get to show Ethan off at the hospital. I believe that we will be heading out to Montana on Monday of the following week.
In other news... Ellie had a very un-eventful first day of radiation! We love the boring treatment days. Now that she's feeling better Ellie has also spent some time with a teacher who helps the kids on the Peds. Oncology floor. Tonight Ellie had a blast doing... homework. Go figure. (She did not get that from me - but don't tell her.) In the middle of the day John and Ellie did a reconnaissance mission to the Metropolitan Museum of Art. They only had enough time to briefly check it out - we are planning to go together when we have more time to spend - but Ellie's been begging to go to see the Egyptian wing. We watched "National Treasure" together and Ellie's all excited about the treasure. They had a blast!
I just have to tell you one more thing. A couple of nights ago Ellie was sitting on the floor with John, putting together a lego project. She looked up with a sweet smile and said "You know, I was just thinking how cool it would be if I grow up someday and have a daughter who has cancer." After staring at her a moment in wordless surprise, I finally stuttered out "Well, sweetie, it's not exactly thought of by parents as a good thing when their child gets cancer, but I guess you would know what it feels like and how to help her through it." She smiled and said something like "Yeah, that's what I meant. Besides, you could teach me how to do the things for her like you do for me." It was one of those perfectly precious times when we could see how truly happy she still is. Sure, she has her "why me" moments like anyone would, but in the end she is able to find a certain amount of contentment even in the midst of cancer. I just thought you would all enjoy sharing that moment with us.
We love you.