As it turned out, a great opportunity in Hawaii popped up. So we took a chance and moved when I was 8 months pregnant, with 2 preschoolers to an island in the middle of the Pacific with no house, no family near by. We arrived at the tip top of the housing market. Hopping in and out of cars to look at houses when you are 8 months pregnant-meant that as we pulled up to a house- I decided immediately if I could see myself living there. If the answer was no- I refused to get out of the car. We had lived in base housing for years- I did not have high expectations. Phil did not appreciate it much. I could blame it on the hormones but it's just me. I knew that with 3 kids, we did not need a fixer upper. We ended up renting and built a house.
We borrowed furniture from the Air Force but splurged and bought a bed for us and a recliner. We learned real quick that stuff is stuff. There were many perks to the lack of clutter. I was borderline gestational diabetic, not by my blood sugar measures as much as by Lily's giant tummy measurements. We watched her closely and did 3 non stress tests a week. I had almost constant (fortunately not painful)contractions. I got to see her by ultrasound once a week. I had more ultrasounds with her than I had of all the other kids combined. Sometimes Phil and the kids would get to see her too. I look back and wonder if her tummy was so big because of the giant adrenal tumor, but there is no way to know. I remember them looking at her kidneys carefully. But bygones.
Lily was supposed to be a St. Patrick's Day baby. But as my 3rd c-section at a military hospital, I didn't get a lot of say. They picked the 16th. And when they called on the 11th and rescheduled to the 14th, I was so uncomfortable I offered to go in that afternoon if they wanted. My mom was scheduled to get in later that week to help. We arranged for the other kids to stay with friends and we were all too ready for our Lily monkey.
Phillip was a bit of an emergency delivery, Phil and phillip had the flu when Kiera was born, so this delivery despite all the craziness of a move and new job, and giant sized baby was a little more laid back. Ha. Phil actually got to take pictures. It was the first time and only time I saw anything of my children being born. It was surreal. As he was cutting the cord and hanging out with her- I just felt relief, she was out, she was healthy and she was here. IZ's Somewhere over the Rainbow played in the OR as they sewed me up. It was beautiful. 2 days later we were discharged and picked grandma up at the airport on our way home.
Adrenal cancer is no joke. The prognosis for Lily, according to the data was not good. They don't say IF it comes back, they talk about when. Her tumor was too big, it was making hormones, we had the blasted LFS working against us. The change of third tumors(she had that sarcoma in her leg too) is pretty high too. But against the odds is Lily. We are truly grateful for every day she is here. We cherish every moment we have together as a family. The tough ones, the great ones, the absolutely mundane ones. I've tried not to let her cancer past BE her identity. She was young enough, she really doesn't remember a lot of it. Even with all the battles with schools about adrenal insufficiency and some hearing loss and lots of doctor's appointments- we try to keep it normal. Which is silly because she is clearly anything but normal. And that is a really good thing.
I have always made a big deal of the kids' birthdays. I don't like being the center of attention but I love celebrating them. They are my greatest achievements and collaborations with a certain fantastic partner. Over the past few years they have gotten to an age, their likes change and realistically I just don't have the energy to do huge parties. So we have been trying to find better ways to celebrate.
|Lily's 4th Birthday|
The kids have really stepped up and it makes me so proud. When out ordering a prom tux with Phillip, Bella suggests we should get Lily some earrings for her birthday. She and Phillip help pick out 2 really pretty pairs. I get her shamrocks to wear. When Kiera and I are out at Ross looking for banquet dresses- we see this fluffy purple monstrosity of a dress for under $20- we look at each other- Lily. The kid is shaving her head at 11- when kids are just getting into the mean awkward social phase and I love that her siblings are looking out for her. We celebrate her birthday a day early since her actual birthday is on a Monday. Her actual birthday was earlier than planned so it is fitting.
Lily and I spent the morning assembling her St. Baldrick's poster. Which means I fought with the printer for a few hours while Lily glued down elements that the printer saw fit to actually print out. Then not only does Kiera make Lily's birthday cake while Phil takes the birthday girl swimming for some 1 on 1 time, Kiera dresses her up when they get home, does her makeup and hair and helps me with an impromptu photo shoot. Bella blows up balloons and hangs streamers. Phillip lets lily paint his nails because that was her request? Hey whatever works!
Then the greatest present of all on her birthday was hitting her St. Baldrick's goal! We spent the evening preparing awareness ribbons and postcards for Lily to hand out in her presentations at school. After her presentations, she said she felt bad because kids cried. And we talked about how she handled it and that sometimes people have different hard things in their life and sharing our experiences is a good chance to help support each other even though we have different hardships. She said that part felt good, the part where friends helped each other by talking about how her presentation made them feel. And that many kids asked about cancer and her time in the hospital because most had never been in a hospital or knew that she had cancer. This is the balance I try to find because cancer is a part of our world, but it is not the only part, even though a lot of times it feels like it. I am so impressed that Lily took this opportunity to share her journey and show how that inspired her to shave her head. So when these kids see her bald- they will understand a bit more why and that is a good thing. And beyond that they will see Lily, a friend and a cancer survivor.