Summer Break LFS style

Part of our summer routine is scans. With Li-Fraumeni Syndrome, we try to catch cancer early with the hope that we can treat it. Ultimately we hope to find nothing. We try to stay optimistic- we know lots of people who have LFS who don't have cancer or have had really good success catching tumors early. There is a certain amount of stress associated with this looming cloud- we call it scanxiety. It is real. It is vicious and no matter how much you tell yourself not to worry- you do. I get a little manic- trying to get things in order- just in case. Nothing goes wrong if everything is in order, right? Not exactly, but your mind plays these games because we are human and we have feelings and a need to preserve our future.

Before we can get the scans ordered, we need to have an annual visit with the kids' oncologist for the general clinical exam and talk about any concerns. There are a couple this year, but one of the good things about these appointments is that the docs are reassuring- most concerns fall along the "normal" kinda kid development curve but my concerns give them an opportunity to order more or less tests to rule out problems. The kids know the way to the clinic. Phillip and Lily are followed more closely because of his diabetes and her history of cancer. Unfortunately with LFS, once you have had a cancer, the chances of another one developing are much higher. Lily's already had 2. Sometimes we forget about the sarcoma in her leg because it was a lesser threat at the time.

 They line up for weigh in. A good math exercise- converting Kilograms to pounds.  I try to pay attention since I know I will need this information when we schedule MRIs. But my memory is a bit suspect these days.

 Then we pile into the treatment room for vitals. Our nurse was a saint and helped us out by managing to get all 4 kids seen at the same time. I appreciate this a lot.

 After vitals we wait in the oncology waiting room while the kids are seen in pairs. They meet with our oncologist, who will be leaving soon. I am very sad, she's been with Lily since the beginning of this journey. 2 residents also sit in. Tripler is a teaching hospital, but I also like to expose as many young doctors to our weirdness as we can. Some days I'm not in the mood- but I know how important it might be for someone else down the road just to hear- sure I've seen LFS before.

 Lily practices taking Phillip's blood. I warned them we will have to do bloodwork and a poke is involved. My kids all have my tough veins. Sorry about that munchkins.

 We LOVE special visitors like Lili the dog. This helps settle the nerves and pass the time. We talk about our other furry friends Bailey and Indy. We visit with our favorite nurses and child life specialists and docs. We miss them but also kinda grateful our visits are infrequent.

 Lily gets a bonus urinalysis this round. Love that she's old enough to handle this like a champ. Hate that she has to and that she mentions that this is one of the easier tasks. Some families do ultrasounds and other exams for their checks and get blood done every 3-4 months. After careful consideration with our docs, we agree with all our other visits and since we aren't actively monitoring problems- annual visits are good for now. It is a balance.

 Time for bloodwork. A quick poke by the lab specialists- they are the best- I've really never had a problem in the Tripler lab. I know this is stressful for the kids. It's easier afterwards when they all say it was easier than they thought it would be. Lily still has some pretty bad memories of bad poke experiences and a bit of PTSD but other than a stress tear that leaked out she breathed through the process and lived to tell about it.

 7 tubes for each kid. They look at the blood counts, adrenal hormones, and other possible markers of cancers.

Who gets a bonus 5 tubes drawn- this kid! Grand total- 33 tubes of blood from the kiddos.

 The car ride home is a good chance for nap time. I am glad we can take these steps, even if it is stressful. As they get older, it will be part of their routine and they will have the experience and tools to make the best decisions they can for their health. I would love to protect them from all the bad stuff, but some of it is just unavoidable. The best we can do is hope for some good breaks and deal with what we have to. Really it's true for everyone. Until then we have fun and try to do normal fun summer things!

Next week I have treatment and my Brain MRI- really hoping things are stable. The following week I have my PET scan and the kids each have their full body MRIs on different days. Each one will take about 3-4 hours. It will be a long week but hopefully will give us some peace of mind. We will take all boring and clear thoughts we can get!

Just Part of It- the Giving side of Cancer

As a cancer family, we have lots of organizations that have helped us as a family. Some with very tangible gifts, the Hawaii Children's Cancer Foundation that helped us with some unexpected bills when Lily was first diagnosed or the Make A Wish Foundation, who sent our entire family to Disney World after Lily finished treatment. Other groups like HUGS here in Hawaii, offered respites, surf outings and fun with other families going through tough times.  They also helped us celebrate the lives of some of our dear friends in their annual Celebration of Life ceremonies and we could always look forward to wonderful Christmas Parties. It is humbling to be on the receiving end of charity. But it is also an important thing for families to be a part of it. For years I volunteered in many different ways, we always raised money for St. Jude's in grade school, I helped run a Christmas card campaign at the Children's Hospital in Denver when I wasn't spending time wiping down the play room, delivering books to patients or doing arts and crafts.

Hawaii doesn't have as many resources as some other states, but the ones they do have are very special. Somehow we seem to miss out on the sibling camp and cancer kid camp every year. I think it would help my kids, but then part of me is truly grateful we are not in clinic enough to be aware of or recommended for these resources and too busy with normal activities. As I've learned, adult cancering is very different than kid cancering. As it should be. Kids shouldn't get cancer. I've always walked the fine line between awareness and normalcy. I've known adult survivors of childhood cancer who let cancer be the very foundation of who they were. You can not go through something like cancer and not have it BE part of you, but I want more for my kids, I want them to have moments of normal in the world of LFS. It's a balance. I shy away from letting my kids be the spokesperson or poster child for events. I didn't want them to be known as the kid who has cancer, to be labelled. Yet let's face it- it is a big part of who we are. So this year, Lily is old enough to understand more about cancer, more about the organizations we support and why we do it. I gave her the guidance and let her make decisions. She loved being up on the stage and shaving her head for St. Baldrick's. Part of me wonders is it because of me, am I influencing her in some way. Which is silly- OF COURSE I am influencing her. By my actions, my guidance every day I influence her and her siblings. And this is one of those times when she took the reigns and I have to say I'm extremely proud of what she's learned, the awareness she took to school and how honestly happy it made her to be a part of the St. Baldrick's family.

A couple weeks ago they called and talked with us for a blog post. I was tentative but also decided that it helps me immensely to hear positive stories. Lily is a positive story. The 5 year survival for her tumor was poor. Throw Li-Fraumeni in there and well the odds are kinda stacked. BUT we make our odds. By making the best of our time and efforts. I am extremely proud of our family. It's not an easy balance and they all are doing amazing and cancer is just a part of it.

St. Baldrick's Blog- Lily's Story

Life Rafts in Mutant Land.

I got to spend some quality time with my family this past week. My online mutant family, some  of my own mutant family and some non mutant family. Sometimes when we are far away on an island, it's hard because I miss my family so much. The milestones, hanging out for holidays, the craziness. Sometimes I'm glad to be on an island and missing out on some of the craziness. But there is nothing like the loneliness and helplessness you feel when cancer wallops your family over and over and you are an ocean away. Add in I'm not the biggest fan of air travel and the carefully orchestrated planning required to keep our routine afloat- that means my travel plans are thoughtfully considered and often come down to last minute luck. I sit and fretfully worry about the deluge of problems that might befall me anytime if the cancer Gods so much as get a whisper that I might be planning a trip. Yet, we have carefully navigated this superstition and the outlook is good.

When the Li-Fraumeni Association announced the 2016 LFS conference in Columbus, Ohio I was a bit disappointed- Columbus. It's not as far as the east coast, but still a bit of a trek. Of course the last time I was actually in Columbus was 20 some years ago and we merely drove by in 2012 during our summer tour. Man has Columbus changed! The airport and city were clean and very friendly, I was really impressed. The other really big positive was that it was within driving distance for a lot of my family and so many of my online support group friends. Several sponsors of the conference are local to Columbus- Nationwide Children's Hospital, and The Ohio State University. They have worked closely with the Wyss Family(Soccer for Hope), who has been profoundly affected by LFS and has dedicated over a decade to helping foster LFS research and advocacy.  The other bonus is that the Ohio State University has a really good Biotechnology program and I have a high school senior who will be looking into colleges this year. Perfect timing for a mother-son trip and maximization of my traveling to visiting people ratio. Talk about getting your proverbial mutant bang for your buck. Probably shouldn't say that out loud. or at all.

Families, real and acquired can be a tricky business. In mutant land, I've acquired some extra family by choice who are as genetically volatile as I am. I've heard my uncle say more than once that our genes were fished out of the shallow end of the pool. But some of our other ones come from the deep end of the ocean- the ones for resilience and empathy and ability to triage bullshit into a palatable sandwich and laugh about how crappy it tastes. These traits make for some really interesting after conference discussions. Many of which are fueled by adult beverages.

There is no way to get from Hawaii to Ohio without losing a day. Phil, being the dedicated compassionate, wonderful husband he is- not only phenangled travel arrangements, his schedule and childcare for the girls so Phillip and I could attend- he understood how important it was for me to go. The time I got to spend with the younger Phillip was invaluable. He used to be little. He's not anymore. I know most moms wish to slow down the growth, I don't. I'm grateful for every moment, every step. Even the ones that are icky and exhausting and I have to chant over and over- I'm grateful for this. I'm grateful for this. I had a few panic moments of- shit- he might actually be going off to college in a year and I might still be here. That's where the panic set in- I'm not upset we are to this step- we live on an island- he hasn't toured colleges- he doesn't know what's out there, how can I make this happen much less even consider it financially or medically. It makes me momentarily miss normal until I realize there is the illusion and opportunity of normal and this is it. We can't spend weekends driving here and there to peruse the interstate options. He's seen colleges, but he was younger and your perspective changes. Columbus was a good opportunity. He's dealt with diabetes and what it means for him for years, but learning about LFS is more of a gradual education in our family. Gradual in the sense of disaster preparedness training, I set up the foundation of appointments and we work our way into what exactly the risk means as they get older and can understand more. It's lining up your life rafts and hoping you never need them. Sometimes you get schwacked with information rapid fire as the tidal wave of each cancer diagnosis happens. College will be a strategic placement near someone we are close to- so if the shit hits the fan-he is near someone or at least within throwing distance of a lifesaver.

This year, young Phillip came home from AP Biology with a lot of questions- they were learning about TP53 as a tumor suppressor. He was a bit overwhelmed by the implications. But then he started asking questions- how do we treat it- what about this- what about therapy- what's being done in research? I think I want to help find a cure. I will admit that the fervor and hope I had as a young woman about the idea of a "cure" in my lifetime faded a bit by the constant barrage of cancer and loss in my family. As my dad laid dying he never once discouraged me, even though the hope for a cure for him was not even a possibility. He had hope for me and I have hope for my children. Suddenly I mentally transported to 1994, considering college with a sick parent, being unsure of finances and life and this big step- not wanting to be too far from family but wanting to be far enough for some space. I could see the weight on Phillip's shoulders. Normal college kid wants with the shadow of cancer. Taking Phillip to the Columbus achieved so many goals, quality time with each other, family time, learning about our syndrome, and checking out a college. I contacted friends in the area to coordinate visits and managed to line up a tour of OSU with a mutant friend's son. I love it when a plan comes together.

We landed in Columbus early Tuesday morning. Fortunately a room was ready and after 19 hours of short naps on 2 different flights- I was ready for a couple hours of horizontal napping which would refuel me for mutant shenanigans. I woke to texts from arriving friends and so began 4 days of therapy and hope. Like I said, mutants are a bit volatile. Not in the aggressive way, but rather the combustible nature of our cancering. Treatments and screening take time and resources and often times- that time and those resources have to be filched from normal sick leave and budgets. It is not easy to find a chunk of time or money to make it to a conference in Ohio. We tried to help as much as we could through Living LFS, and there were quite a few scholarships granted from the other sponsors- which helped many get there who would haven't otherwise been able to. The therapy was immediate and tangible- usually in the form of laughter through tears- the best kind of tears. The evidence of wounds gradually healing and sadness released into the wild. It is a rare gift to be able to meet friends you've met online and feel like you've known each other forever. This wouldn't have been possible without donations(remember those fun t-shirts?! yep- THANK YOU!) and the sponsorships. It was also great to see the number of family members and researchers that took the effort to be there. When you have a really super rare disease and you get to be in a room with a couple hundred others who get it, who are all working towards the same goal- it's pretty inspirational. And humbling. And exciting. And let's face it- mutants are awesome and so are their families.

I got to hug old friends who I haven't seen since the very first 2010 NIH LFS conference, new friends we met in Boston and Portland and new new friends who will now be the Columbus friends. I talked with mutants about how to talk to kids about LFS, how Phil handles being a spouse and the ever present balance of loss and hope. I talked with researchers about new developments in adrenal cancer, like Lily's and mouse models for LFS. I talked with Genetic Counselors about resources and needs in the community, the possibility and hope for family camps. Talk about one of the many times I wish I could clone myself- so I could just sit and talk with everyone.  Yet in true mutant fashion- we packed as much as humanly possible into the short time we had. We set up a Living LFS table with hand outs and information and of course- hugs and support. The young Phillip got to sleep in and decompress from 4 AP exams the previous week but also got to chat with people about LFS and hang out with family. It was meaningful to look over and see him respectfully trying to communicate with a pediatric oncologist from Japan or hanging with Aunt Kathy and Uncle Tom. Or to look across the room and see my uncle chatting with a friend we met in Portland. Or to see my mom and aunt hugging a friend from the support group who just lost her daughter.

We talked a lot about the ones we lost, in a way where you didn't feel overwhelmed by the loss of it, but in a way you  feel when you talk to someone who understands, who has been there. In ways that honored their memory. In a way that says- LFS sucks but look there's a life raft off there in the distance- the hope for a better LFS reality! You say their names and it doesn't sting, it feels like you are saying hi to them. You skip the conventional formalities and jump right to the heart of communicating and relating. Sometimes it's difficult to interject Bob and Dad into conversation without the emphasis on loss- I've dealt with it, but sometimes the people you talk to have a tough time. There are awkward silences and discomfort. But in this group, I could talk about them freely and there was none of that, just hugs of encouragement and nods of understanding. I missed Bob and Dad, as I do every day. Having my son, mom, cousin, aunt and uncle there with me fulfilled a need I didn't really realize I had until then. I missed my aunts. I missed my cousins. It was nice to have a strong Connolly contingent there.  I know for many it's hard, these gatherings sometime emphasize the loss.  Feeling lonely in a sea of people. Until you connect with others who are floating in their raft- fishing for those qualities in the deep end of the ocean and you latch your rafts together. And I realized that in taking Phillip to this one conference in Columbus, I opened up some options for college. Not just OSU, which he was really really impressed by- but the number of potential life rafts grew exponentially as he got to know the residents of Mutant Land. And although we are not genetically family in the normal sense, we are linked by mutations and common challenges and just like I'd toss a raft out for any one of them, I feel pretty confident there are safety options available for him. I remember going off to college and feeling bad that Bob never had that opportunity. I look forward to the day that LFS is a more easily managed condition- like diabetes and conferences like this one are a huge step in that direction. There was realism, there was hope, and there was family. And as Phillip and I settled into our seats on the plane in Columbus, I felt sad to be leaving because in our world- you never really know which visit will be the last. No one does really. Then the captain came on to welcome us aboard and introduce himself, Captain John Connolly. Which is my dad's name. And I thought what are the odds and knew we wouldn't be needing the life raft today.

The Forces that Drive US.

I am gonna try and catch up on blogging***maniacal laugh*** I say that realizing my schedule will not allow- so I will try to make time! There is no way to capture all we saw and learned and experienced in Europe - but I'm gonna try and do what I do- apply what we experienced in a way too lengthy post that I set out just to tell in one story, which will be woven artfully like my grandmother used to into about 5 stories- oh you remember So and SO she was friends with your mother's father's best friend's son who met so and so at....and then loop it back to So and So 10 minutes after you forgot what the heck you were talking about. Today is all about- Driving...

Love. Family. Friendship. Knowledge. To Be the Best. To have Fun. To Help others. Responsibility.

There are so many forces that drive us. For years I've felt guilty to even think about vacation. To think of the resources that might be "wasted" on the mere act of recreation.  After I was diagnosed, almost weekly Phil would mention getting our passports to take a trip to Europe. We would watch Downton Abbey and talk about a River Cruise on Danube.

But the kids' activities keep me busy. Too busy to breathe. Too busy to consider a vacation, although part of me began acknowledging it was time. Then the brain mets. Another neon flashing warning that I do not have time to waste. Yet time with my children at activities - although draining, was not a waste. It is what I wanted to do- to BE there and BE part of their world because someday I won't be. I didn't know if I wanted to spare the time away from them.

I threw myself into nonprofit work. Expecting the passion from others I felt. Some friendships suffered, but in my mind, this was for my kids- a foundation for them for having to live with LFS. Resources available for when I would no longer be here to help them find what they needed. Connection to others. I struggled because family and friends come first, and even though my "work" was entirely volunteer and self driven- it is very important to me. I have a lot of support. Then a few things happened that made me really question what I wanted and again if time was limited- how did I want to triage it?

My 40th birthday. When I was diagnosed with metastatic cancer- forever cancer- terminal- although not immediately- I knew I was incurable. I don't like big parties- despite the fact that I love to throw a good theme party for my kids. BUT I decided 3 years ago- if I made it to 40, there would be a big party with all my friends and family- a chance to hang out and visit- so no one could assemble at my funeral and wish they had seen me. I started thinking about the locations and what would be easiest for people to get to and logistics and I didn't feel good about it. And ultimately what if I picked a convenient destination and no one showed. And Phil brought up the passports. Several of my friends came to visit and hang out. I was honored and grateful for our time together. And some friends pointed out that well I wasn't really a good friend or business partner. And I decided the friend who had stuck by me for every chemo, through surgeries, through loss, through 4 c-sections- through some crappy stuff- really wanted to go to Europe, with me. I wanted to go to Europe. The tough part now- was letting it be about ME. And so I set a fairly unrealistic expectation- giving him plenty of opportunity to cry foul and back out. But not the incredible friend I married- he threw me the best honeymoon, birthday, European themed extravaganza ever. I forgot to consider his drive to make me happy might outweigh logistical ease. I was OK with it being about US.  But then again, we wouldn't know what to do with easy if it hit us.

Where we went in Europe- transportation was fairly straightforward. There are lots of options and Phil did his homework. Just like the internet has been a game changer for support groups and friendships- it really takes a lot of confusion out of public transportation. We relied on subways and trains(my new favorite form of transportation!) a lot. When my knees started giving out from walking too far or all the stairs up and down to the subway, we could take a taxi, or uber or bus. Transportation options are limited in Hawaii- and it really was fascinating to see how well all of these  options worked for us at different times in Europe. Our plan wasn't to drive except in Italy. Phil rented a car so we could see more of Tuscany and explore at our own pace. Talk about an unforgettable experience.  Each destination really has it's own culture of driving. In general Europe drivers are pretty fast and I wouldn't call it reckless- but there is a bit of a learning curve coming from Hawaii for sure. The signs are different- Car Siri and Google Siri never agreed on directions and well me I was too busy looking around to be considered a competent navigator.

One day after some stressful driving on Italian roads- Phil had a 6 Km respite from directions or roundabouts or exits or turns. "We've had quite a few epic road trips together." Just like that I started thinking about some of our long drives that we could now add Tuscany to.  Besides countless trips through the mountains, there was the drive east from Colorado to DC the year after dad died. We stopped in Oklahoma and Ohio. Hitting 6 flags over Texas. There were countless trips from Boulder to the Springs, then there was the Spring break push to Arizona. There was the Christmas after Phillip was born from Texas to Colorado when I got carsick. The move from Texas to Florida to Virginia, then back to Florida. There were several drives to Disney. The the cross continent trip to California when we made our big move to Hawaii. I miss driving- picking a destination and just seeing what you can along the way. Stopping at some crazy restaurant or attraction you saw a billboard for. In Hawaii- barring the silly traffic you can drive around the island in about 3 hours. You see a lot of paradise in that time, but after awhile- it kinda feels like- look kids- Big Ben, Parliament but look kids traffic, rainbows. So yeah- we were the silly Americans who felt compelled to Lampoon our way through every roundabout we could- and were there ever a lot of roundabouts.

Several times we would just stop during one of our pedestrian outings and just watch the traffic- it's impressive and really amazing the near misses we saw. Motorcycles zooming through narrow divides,  how the drivers seem to just adapt to the craziness of it and go with the flow or zip right past it. It felt like our life. It was nice to sit back and see it generally worked out. To not have to be in the driver's seat. We often joked about could you imagine teaching young Phillip to drive here? Recovering from the thought of it required several beverages of the adult variety.

The day after we returned, I had a parent meeting for driver's ed with Phillip. Nothing ever starts on time in Hawaii- and I was on time for a meeting that obviously started before the time I thought. I walk into a packed classroom and already am labelled as the late parent. It doesn't actually earn the Haole mom any points. But I already have my license. They go over the basics- basically emphasizing this course is a small part of the process and actually getting an appointment to take the driver's test will be the true challenge. The instructors take it seriously, yet offer a couple jokes about teens and their nature and the hazards of learning to drive. The kids get 6 hours of behind the wheel(BTW) training. There are 44 other hours parents are responsible for. I raise my hand- Phillip's permit is several moths old- we've done a fair amount of driving. We've covered the basics- even logged some highway driving. In rush hour. Those long trips back from the hospital appointments are great for logging driving HOURS. Can we backlog those hours? Absolutely the instructor says- all hours count and they can tell which kids have had them and which haven't.

Another mom takes my cue and raises her hand- what if you are terrified to be in the car with your child driving? How do they get those other 44 hours? Oh dear. No one laughs. Oh. Ok. The instructor explains that anyone over 21 can help your child learn to drive- aunties, uncles, neighbors, you can even hire people for $45 an hour. $45 dollars an hour! Forget Uber- I'm gonna let teens drive me around. I have good insurance- it should be fine. The instructor points out some of the basics they focus on in their BTW training and encourages parents to do so as well. One of our first lessons is driving backwards, we start at the parking lot and drive down the road to the boys and girls club parking lot. 

I laugh out loud. The room turns and looks at me. The instructor is not smiling- he continues on about this backwards driving lesson. Shit, it's not a joke.  So yes the kids get 6 hours of "official" DMV sanctioned/regulated BTW training and 1/6 of that is learning how to drive BACKWARDS! BACKWARDS. Driving. in a car. with 2 other teens waiting their turn. TO DRIVE BACKWARDS. Well it explains why a disproportionate number of people back into parking spaces here and don't stop for red lights- that part only gets a few minutes.

My brother got his license after his brain surgery. There was much talk about his wearing a baseball cap and hopefully no one would notice his shaved head or crescent shaped scar during the process. There were several times I refused flat out to drive in the car with him and walked home. Because I was 14 and knew everything and he simply was my brother and drove like a teenager- not because he had a brain tumor. I think I made my mom's job infinitely harder during that time- it's hard enough to make shitastic decisions between your dying child's biggest wish and general motorist safety without having a teenager question your every move. The judgement of others when dealing with these stressful times is never helpful. Especially young unexperienced teens. Or family. Or people who should be there to support you. We all lose a piece of our sanity and focus during times like that. You just do the best you can. Any time you get behind the wheel- you hope for the best and a whole bunch of luck. And always remember every one is driving with a condition you know nothing about ;)

I remember learning to drive with my dad. He was all about the defensive driving training- so theoretically I can reason my way through this craziness of driver's ed in Hawaii- but TBH I really feel a big proportion of that time might be better spent on different skills. Dad took me out in the rain, He took me to hills, in a stick shift- which I never figured out, until I was in college and a woman explained it to me in a way that made sense. We practiced skidding on ice, he would throw emergencies at me and I would have to react. We found dirt roads with ditches on either side. I learned that sometimes you may have to decide between hitting a fluffy animal and saving 2 cars of people. I learned to take the foot off the gas going into a turn and accelerate out of the turn- we went up into the mountains and practiced hairpin turns. He kept a running tally of points in his mind of all my infractions- points that had no real world equivalent but was a way for him to point out to me where I screwed up without screaming that I screwed up. I even got to drive around Maui in a convertible- with my mom furiously shaking the back of the seat like the secondary brake she wished she had. I thought I would be like my mom when Phillip drove- and he probably will tell you I do a fair amount of yelling- which may be partially true. But overall he's doing really well. I have no idea how well he drives backwards though. Fortunately I know more than enough time will be allotted for that in Driver's Ed-so if he abandons biology or music as his educational loves- he might pursue a career in stunt driving.

4 years ago- our world was thrown into yet another tailspin when I was diagnosed with Breast Cancer and Sarcoma. I had multiple surgeries in the span of a week. The urgency was that I had planned an epic summer trip with my kids to visit family and show them The places I grew up and I'd be damned if I was gonna let cancer throw a wrench in it. We drove from New York to Philly- where we visited with my aunts uncle and cousins and grandmas. Phil had to go back to work so the kids and I drove to Ohio to visit my cousin on her farm where Phillip got to drive around the Rustler. There may have been an incident with a ditch, but lessons were learned.

 We took them to Cedar Point- a childhood summer staple. I showed them where I was born in Toledo.  We stopped in to Cincinnati to see my Aunt and Uncle and cousins. I drove and drove and drove. It seemed to rain every time I got in the car. The kids watched Arrietty and Jackie Chan- over and over and over.  We grabbed my aunt in Philly and drove to Boston for full body MRI's - because when you live with LFS- you try and make the crap fun. And I had never seen Boston- so it seemed like a good idea. A year and a half later I'd get to go back to Boston, this time with cancer mets and solid support system of mutant friends along side my family and friends.

Like anything in my life- daily reminders pop out at me of what I have lost and what I am so blessed beyond words to get to enjoy. While Phillip drives he'll throw wacky questions at me. We have really good discussions about stuff I don't think he'd ever talk about otherwise. He's focusing on driving so he doesn't have to look at me while I talk back- but even if he pretends not to listen- some of it is bound to sink in. I don't remember many of the exact conversations I had with dad- but I know they are the foundation of who I am and what I believe. Just like I may not remember every ear infection, every fever, but I know mom was always there taking care of me. And she worked. And she was still a good mom. And sometimes she stayed home and she was still a good nurse and an equal part of my foundation. They are not mutually exclusive. Phillip is at the point he is beginning to worry about the what next. Getting his license has been a subconscious battle- I think he's leery of having the transportation responsibilities on his plate. He's worried about college. He's worried about me.

 Kiera and I have gotten to talk so much in our countless drives back and forth to activities. She is excited to get her permit and already pledges to take her sisters everywhere when she can drive. But then again she has the parental safety net for 3 more years whereas Phillip is in the final stretch. I would be lying if I didn't think about Phillip's graduation in a year and worry that it will parallel my high school graduation. I don't want to be the sick or dying parent. I also really want to be there- for all their graduations. But as many friends lament every single time their child grows bigger- with the "where did my baby go" - I grin and bear it because this year- I got to teach my son how to drive and that was something 4 years ago I wasn't sure would happen. And here we are. I'm grateful to be a part of each moment and milestone I can. I do a lot of good thinking while I drive and today as I drove back from the other side of the island- it occurred to me that for quite awhile I've felt a different drive- a need to get things in order, to impart on them everything I can for the eventuality that I might not be here. Yet on any given day that eventuality could become a reality. For anyone. And I am proud of my kids and would it be easy - of course not- it is never ever easy to lose someone. But our destination will ultimately be the same and we don't know how long it really takes until we get there. Our routes may be different and some of us just happen to be on the route with the big hills and lots of twists- but it will always be a drive to remember.

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.

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.

Lily's St. Baldrick's Page

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.