Saturday, March 19, 2016

11 Years of Lily's

Lily was the first baby we "tried" for.  And even at that we really didn't have to try very much. We were in our first year in a new assignment, we figured we probably were gonna be there for a couple years so hopefully wouldn't have to worry about a move with a new baby and 2 preschoolers. I thought it would be fun to plan something like this. Get a nursery set up. Feel settled.  Ha.

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.
Lily's Birthday

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.

Tuesday, March 8, 2016

Lily's Second Shave for the Brave- St. Baldrick's Event April 24

Lily's 1st St. Baldrick's 2014

Remember 2 years ago when Lily wanted to shave her head? It was an amazing experience for her  and in the process raised almost $5000 for childhood cancer research through St. Baldrick's. I had recently lost my hair due to treatment and many of the emotions were overwhelming.  She said at the time she was going to wait a year and then do it again. Not every year, maybe every other year. I nodded and said Ok because we were very deep in the uncertainty of my cancer treatment. Secretly I just hoped to be around in 2 years.

Well here we are. And not only am I here- Lily is no longer the only one in the family with fabulous curls. She is very proud to tell people that I have HER curls. In January she started reminding me she was going to shave her head.  Phil and I had just made plans to be off island and wouldn't be here for the event. Lily says- it's OK mom- I want to do this. You were there last time. I have so many mixed feelings, but the dominant one is pride. And to see her take the lead and do this for her is beautiful. We started talking about a fundraising plan. Part of me wanted to see if I made it more her responsibility, maybe the novelty would wear off. Silly Jen. I'll say one thing- that kid is mine. She sets her mind on something and good luck changing it.
This is what I say to cancer. 

In a world where I spend an inordinate amount of time trying to talk my children through situations where adults are behaving badly, children behaving badly and over all nonsense- there is this beacon of hope. As the dishes sit unattended in the sink, Phillip is composing songs and teaching himself to play the guitar. Kiera is supporting classmates who are having a tough time adjusting and fitting in while dealing with bullying and poor leadership. Bella soaks everything up like a sponge and then wrings it out and does shit her own way anyhow. And Lily, she feels intensely and struggles to fit in because in her almost 11 years, she's been through a lot. I look how well they are dealing with the past 3 years of my being sick and in constant treatment and although it hasn't been easy, they are remarkable. We are not perfect, but I try very hard to give them tools for happiness and to try and be the best they can be. So when she says she wants to shave off her beautiful curls to help people, we make a plan.

I told her I would post on Facebook for her, but that I wanted her to write the info for her St. Baldrick's page and write the email thank you's. We again were flabbergasted that within a couple of weeks she had already made it half way to her goal of $5000. We know so many generous, caring people. At times I feel like all we do is ask for our causes, so Lily and I had conversations about other ways she could raise money outside of just asking friends.  She decided on Kool-ade stands and making invitations for her friends at school to attend the event. We talked about awareness and how although action is really important, so many people are not aware of St. Baldrick's and what it is about. Then it occurred to me- the 6th graders do IB exhibition projects. It's a self-directed inquiry that is largely based in a community service project. The kids identify a problem, research it, and work towards a solution. I started asking around at school if as a 5th grader, Lily might be able to do an exhibition project about St. Baldrick's.  Lily finally had to be the one to make a formal request. We sat down and I let her write her request, guiding only to help her clarity and format. We talked about which IB attitudes she was using, she even drew a mock up of her posterboard. We came up with a shamrock and gold cancer awareness ribbon.

Dealing with administrative red tape on the school level is not new for us. I try to be as active in the kids' education as possible. It was much easier years ago when I was not employed as a full time cancer fighter. Many parents work very hard during school hours and cannot actively participate, I always felt like it was a privilege to be present and involved at school. We have been lucky to have some sincerely supportive teachers in our time. Many I now call friends. It is a really nice side effect of helping at school, you get to spend time with quality educators who are very passionate, because otherwise I have no idea how they deal with all the added nonsense.

I also know it is not a common occurrence for a lower grade child to ask to do an extra project, but that really is what the exhibition and International Baccalaureate attitudes and learner profiles are all about. Unfortunately I fully expected for Lily to be told no, just not for the reasons that were given. I expected her to be told that she missed the Exhibition deadline and that it is a process therefore it would be too late for her to set up a presentation at the 6th grade Exhibition night. Personally- I feel it's like a curriculum fair and her presence would neither help nor detract from the other students' efforts- it is more of a community venue for Lily to independently discuss her experience with childhood cancer, the lack of funding and a present a call to action. It wouldn't undermine the efforts of the 6th graders and as she was not being graded or given any credit for the project, what is the harm? She would not be asking for donations. That is not what her presentation would be about. It is about getting others involved and letting them know about a local event.

The reason given was that the DOE guidelines would not allow it. Also that if Lily was allowed to do it, they would have to allow other students to do it as well. It was made very clear they could not endorse Lily or her cause in any way, but she would be allowed to speak about it during non instructional time. In a week where there was a gun threat at my teen's high school and a subsequent bomb threat today, I think our efforts would be better spent celebrating and highlighting community service efforts of children. To live in a community where the kids clamor to their teachers requesting special permission to make the world a better place and solve problems with big impacts, that's the community I am trying to foster.

Lily will be 11 on Monday March 14th. Monday is also the day of 6th grade exhibition. She wanted to spend her birthday honoring the cause she has chosen and spreading awareness. She is not asking for presents or a party this year which is ultimately ironic. Instead she is asking for donations to St. Baldrick's, so other kids can be as lucky as her.  None of us are guaranteed birthdays, yet here she when so many forces have stacked against her.  I cringe as adults celebrate entire birth months with extravagance and here we are- so grateful for each bonus birthday we are given and her willingness to use it to help others makes me proud beyond measure. She is allowed to present information to her grade level and we are trying to coordinate that with teachers as it has to be on non instructional time. She is also allowed to hand out ribbons before they leave for break.

Please consider sharing about the event, Lily's St. Baldrick's page or just commenting below with a Happy Birthday message for Lily, it would mean a lot to me. If you feel inspired to donate, that is also really appreciated. Lily's St. Baldrick's Page Thank you for taking time to read this.

Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)