Sunday, November 3, 2013
So watching the UofM video this morning had me thinking about how much our lives have changed in a year. And I wondered what happened one year ago today, thanks to my FB journal of our journey I was able to look it up. I realized that 1 year ago to the day was the day we made our decision, the day we made THE decision that forever changed our lives. We knew then and we know now that we made the right choice. God led us to our choice. Our little girl could not be healthier, stronger or braver than she is now because of her journey. Our family is stronger, our kids more compassionate and loving, our hearts more grateful and thankful. Would I have chosen this journey...absolutely not. But I grateful for the lessons learned, the prayers spoken and the friends we have met along the way. Blessings to all of you!!
UPDATE 10.18.12: We met with the surgeon today and talked over our surgical options with him. Overall, the conversation went well. There wasn’t anything “new” or unexpected in what we were thinking or hoping for. We chatted about our options again, and discussed pros/cons of everything. As far as the amputation would go, it would be below the elbow and he would save as much of her forearm as poss...ible. The more of it she can keep the better. They use skin from the top side of her forearm to cover the remaining arm. The surgery time would be about 2 hours and recovery time is surprisingly short. He said if she is feeling good, her pain is under control and there were no complication she could possibly go home the in 1-2 days. Which was a relief to hear, the initial 3-7 days was a daunting thought to me…how do you keep a 17 month old entertained for 7 straight days in a small room where she can’t touch “anything”. I also spoke with our radiologist this afternoon for a while and she said she had reached out to a few more colleagues throughout the country to gather their thoughts on this. (In the words of the surgeon, this is a triple rarity: sarcomas compared to other cancers are rare, they are rare in the arm and they are especially rare in children) So with the opinions of 6 other radiologists and oncologists gathered we are still down to our 2 options. We are confident we have gathered as much information about this as we can. This is OUR BABY, you better believe we are getting all the info and all the opinions of the “right” people before making a decision of this magnitude. All that being said, we have chosen to amputate. Not to sound too clinical but this is the best choice for her long term survival. We have a few main reasons why we chose this, one being it immediately eliminates the chance of recurrence in her arm and eliminates the risk of a second cancer from the radiation-both of which are very possible. As far as the “cancer” aspect of this the only thing that remains is a risk of it showing up in another part of her body. But we are eliminating 2 of 3 chances for a cancer to come back; which immediately gives her a better chance of a longer life. We also know that, as adults, we both would’ve wanted our parents to choose this option for us, had they needed to make that decision. She will have the surgery and hopefully after a few weeks her little life will be normal again. I wish it would be that easy for Adam and I, but we are her parents’ and it is our job to hold her fear/pain for her. I am sad that she will never wear a wedding ring on her left hand, but I just want her to be here long enough to get married. I don’t care if that ring is in her ear, her nose or her toes. I am sad when I look at her effortlessly paging through books and think of how much different that will be in a few short weeks, but I just want her here. We are sad at the loss of her arm, but the bottom line is WE WANT HER HERE. Whether this buys her 100 days, 10 years or 70; this is what we need to do to keep her healthy long term and to keep her here for as long as possible. Through all this we are very grateful for many things. We are truly grateful that this is all happening without her “knowing” better. We are grateful that Adam and I agree on her course of treatment and we do not need to “convince” the other that our way if the right way. We are grateful this tumor was on her arm, in a spot that was very visible for us to see right away and take care of it. We are very grateful that this has brought literally thousands of people “together” to pray. We have heard from many friends and family that “I have (10, 20, 30…135) people from this (city, state, country) praying for your little girl”. To us that is purely and simply AMAZING. We have had people who are self-proclaimed as “not big pray-ers” taking the time out of their day to not only pray for our little girl but email me and say “I am praying for you and your family”. We are grateful for the amazing doctors and nurses we have had the pleasure of dealing with throughout this. They not only are taking care of our little girl but we can see genuine care and concern for her and us. We are very grateful for our family and friends, we knew we were blessed before but it is very humbling to have so many wonderful people in our lives who love us and support us so much. Delainey’s surgery is scheduled for Monday Nov 19th at 2pm. That is the Monday of Thanksgiving week. We, of course, would’ve preferred to not do it that day, as it is Adam’s mom’s birthday and the week of Thanksgiving, but if they have any cancellations the week before we may be able to move it up a little bit. But it is also fitting that on Thanksgiving we can say that (for the time being) our baby is finally cancer free! I would again like to thank you all for your continued prayers. I would also like to tell you all that we are at peace; we are at peace because we know this is best, God has led us here. We have bad days and good days, we have bad minutes and good minutes. Do I sometimes feel like crying at Walmart, or Starbucks or Church?!?!? YES!! (then I just pinch myself really hard so I deflect the pain, (who needs people looking at you like a crazy person because you just busted out crying in the toilet paper aisle?) weird I know but it works). We are at peace.