I'm sorry for the lack of any real updates recently. At the end of most days, I'm just to wiped to sit down and write about it. I will do my best over the next couple days to catch everyone up on what we've been up to, the treatment plans and decisions we have to make and the lessons I've learned so far.
Our time home was awesome! Nate recovered quickly from his surgery and was back to his old self in no time. It was nice to sleep in our own beds, with all 5 of us in our home at the same time. It was also nice to do "normal" things like, go to Costco.
Nate's main oncologist wanted to delay the start of chemo until the results of all the tests on his tumor we're duplicated by COG (Children's Oncology Group), a nationwide network of children's cancer doctors who all collaborate to ensure kids are getting the best care. Nate was discharged Friday night and due to return Tuesday to start chemo. They called and pushed it back to Thursday because they hadn't received the COG results.
After packing as much fun and normalcy in to the week as possible, I took Nate to clinic Thursday knowing that we were probably going to delay chemo again because we still hadn't received the COG results and Chris and I were trying to make some decisions about the future of his care. Thursday's clinic visit was really rough for me. I was by myself and our main doctor was not there and the doctor I spoke with was pushing to start chemo, even without the COG results, which didn't make any sense to me because we had already delayed it 5 days waiting for the results (at the recommendation of Nate's doctor). I also felt like they were pressuring me to not consider the other therapy course we are considering. Ultimately, we decided to delay chemo until Monday when, hopefully, the COG results would be back and Chris could come with me to meet with Nate's main oncologist and discuss therapy options.
I am so glad we delayed chemo a few more days!! We had an amazing weekend! I took the kids to Imagination Avenue (a place we won't be able to visit once chemo starts because it's a germ fest) on Thursday afternoon. Friday we went to the Harkins kids movie. Nate loves going to the "voo-vies". Then had Chino Bandito for lunch and checked out toys at Target. That afternoon, we learned that Jaime's water had "accidentally" been broken by her doctor and that my nephew was on his way!! Friday night, Chris and I went to see Captain America. I woke up Saturday morning and headed to the hospital with my mom and aunt to wait for my nephew to be born. I had the great privilege of helping Adam and Jaime's mom and sisters coach Jaime through her labor and to watch my nephew be born!! How awesome is that! It was a hard labor, Jaime pushed for 2 hours with minimal help from her epidural and she wanted to give up twice, but she didn't and she was awesome! I can never thank her enough for letting me be a part of her special day. What a great reminder that we can get through anything, no matter how great the pain, if we take each moment as it comes and NEVER give up. Sunday we had a fun filled day. We attended church and spoke with so many nice people who we have only before met in passing who offered help and prayer. We also listened to a great sermon on not giving in to fear. We took the kids to meet their new baby cousin, then met the Schneider's for lunch and a fun filled trip to Jambo Indoor Amusement Park (another chemo no-no germ fest), where we learned that Nate would like to live in an indoor amusement park because he cried when we left and said he wanted to live there "fo-ever".
That night, I took the boys in the pool (no swimming for Nate because of his central line (a tube into his chest that they can use to deliver chemo, other meds and draw blood) so he got in an inflatable boat with a "Mommy motor" and was as happy as a clam). I looked at my sweet little Nater and thought, "I CAN do this...whatever it takes...I can and will do it". Unfortunately, in those first few days of diagnosis I did not always feel this way. In fact I think I said "I can't do this" over and over. Really, I have no choice. I don't yet know why this is Nate's journey, but it is, and he's worth it. There is no time to fear the future or mourn the past, we must take this disease on, one day at a time. I feel strong, I feel prepared. I CAN DO THIS!!
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