The Quiet Before the Storm

I'm hoping there will be no storm. Really really really hoping.

I've gotten a couple concerned messages and calls because I've been quiet. It hasn't been quiet here, so I guess I lost track. So I wanted to post a quick note. Part of it is I feel like I am surrounded by people who are all fighting their own battles and I don't want to add to their stress and part of it is I don't feel like a very good friend right now to anyone. Which bothers me a lot. I do appreciate vacation posts on Facebook and celebrating all the fun normal many of my friends are experiencing this summer virtually and my heart is aching along with many who are going through tough things. I wish I could do more.

Tomorrow- Monday is my PET/CT scan. yaaaaaaay. It's either good or bad- I can't predict it so I won't. My mom asked how I was feeling- and other than this cold I've acquired- most likely due to the stress and MRi last Friday- I can't say I have any major flags. All my concerns could be old age, weight related, or cancer. I already know I'm old in LFS years, I am overweight and I have cancer, so the bases are covered.  I feel pretty good. I miss normal. I miss waking up and not wondering if this is a normal ache or something ominous. But I also know I have it pretty good and I would like to keep it as stable as possible.

The kids are doing well and we had a few physical and emotional hurdles to overcome this past week. They tend to sense my mood and I have definitely been in a funk.  We had a wonderful 4th of July in town. I was worried Lily and I would both be extremely saddle sore, but we were good. For Christmas, she wanted a horseback ride. Timing between treatment and life has been difficult. Nothing like scanxiety to inspire me to get stuff done and this was top on the list. It was truly a great experience- back in the woods of the North Shore, there were moments I felt like I was back in Colorado and moments my hips hurt so bad I wondered if it would be frowned upon for me to get off and walk- but I was pretty sure I would break something on my dismount so I kept stretching my legs as much as possible on the giant beast named Rascal that was tasked with my baggage and liked to walk into trees. Lily's horse Jewel, which she spelled Joule(tickled me to no end- a measurement of energy as this horse was very easy going) was a perfect foil to her personality. Laid back and stopped every 5 feet to nibble. Lily asked if this was what it was like taking her anywhere. I laughed.

On the way to the horseback ride we stopped off at the favorite beach of one of our little friends who cancer took from us. We remembered Ryan who we didn't really even get to know because of cancer. It was also the 4th anniversary of our clinic friend Abriana's death.  I remember the year, because I found out she passed when we were in Colorado for the 4th of July after my surgeries. She was an amazing little fighter, much like our friend Haley who also died the first week in July 2 years ago. I think back to Lily's Chemo independence Day party 7 years ago and how I knew we were never going to be independent of Cancer but that we needed to celebrate. We need hope. I never wanted to imagine a world without Lily, although as a cancer mom, you try to prepare yourself. So when I think of Anita, and Amber and Wendy and how much they miss their babies- I know I can't even fathom how much their hearts hurt, but I can remember their wonderful children. Just like we remember Bob and Eric. Grief is just heavier some days and you carry it. And it is cumulative.  It was much heavier this past week. So it was a good time to make some memories.

After my MRI- the technician talked to me about the kids' scans coming up this week and that there were some sequences added and they would be longer. They typically take 2-3 hours- which although not fun, is manageable. We are now looking at 4-5 hours. This is the first year Bella is trying non-sedated. Sooo, I've spent some time this week and weekend trying to touch base with our radiologists and some of the LFS experts to try and see if we can phenangle a more efficient routine.

I know it can be done, it has been done at other institutions. It's just a matter of connecting our team with the people who have already done the legwork. Times like these I am grateful for military healthcare- the specialized care and their willingness to work with our rareness is impressive. I know so many mutants who fight and fight and fight to get coverage and screening. I feel bad complaining that our screening is too long- but that is part of the reason many can't get screened- that much time equates to $$ and without a protocol- many radiologists are hesitant to stray off the standard path. I am grateful I chose biology as my major and can understand a lot of this going in. Sometimes it's a curse, but overall my college education has paid so many invisible yet tangible emotional dividends.

I think that's one of those things that you don't understand about cancer and LFS until you live it.  The need to research, the need to find out information and the amount of time spent advocating for yourself or your kid on a daily basis. For care, for school, for work, in general and then to put on the smile and try to be normal. Because at the end of the scan - this normal could be flipped and although you have to prepare for it, you can't so you have to keep busy and hope for the best.  So we have a storm of scans this week. I'm trying to harness the quiet in thoughtful preparation and visualizing good results.

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!

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.

LIVING with Li Fraumeni Syndrome

Li Fraumeni Syndrome is something I have lived with since I was a child. It didn't have a tough to pronounce name back then- we just called it cancer. Then we called it p53. It was our family joke- no one knew what it meant, but it was our bond. It changed our dynamic, reduced our numbers, left scars and broken hearts in it's wake, so we turned it into a big irish wake. It also gave many of us an immense strength, unsurpassed bravery, and a compassion that is unparalleled.  It is part of my history, something to look for in the future and really tough to LIVE with. Some has asthma- and face many episodes of not being able to breathe- living with LFS is not like that. It can be- it knocks the wind out of you and threatens to kill everything you hold dear in record time- but there are times when you can breathe just fine. LFS is like being one of Dr. X's mutants- you spend a lot of time waiting to see what your super ability might be as a trade off for the mutation. So far the only increased power is the ability to field 10x the normal sense of urgency. Yet when you meet someone else with LFS- you get a feel for what the trade off is- you are in a select group of people with a strength and sense of humor like no other and I am grateful I get to know them.

Most days you feel like you are in the middle of a lightning storm, feet firmly on the ground- you look perfectly rational except you seem to be holding a kite with a metal key tied to it. This could be a sign of absolute genius or mental instability and you won't know for sure until the lightning strikes.  You could be brilliant, but you might be a crispy critter- it all depends on if radiation treatment is called for or not. Every headache threatens brain tumor, the flu hints at stage IV stomach cancer- but could also be a brain tumor. Is this a bug bite or sarcoma?

So you feel like an evil scientist after reading more than your average bear on every cancer known to man, being ready for potential symptoms and signs- you start the experimentation process. YOU are the experiment. There are no set protocols to screen for the plethora of cancers that could befall your meagre human form and doing the individual scans and tests to cover every body part that might be affected takes 2 months- I've done it. I found out a few things along the way- like I am clausterphobic. VERY clausterphobic- which is not good unless you consider that mri machines look like gigantic powdered donuts and the sight of both now gives me cold sweats-it might be a good diet plan along side the go lytely(or swiftly and furiously) and the fasting for bloodwork and scans- but somehow, through great dedication and perseverance  I still manage to keep my weight up. I'll blame it on the other positive side of the gene pool that gave me this mutation- the stress eating gene.

 If you think about it- what doctor in his or her right mind would stand behind so many screenings and tests in a person who has an 85% chance of getting cancer in their lifetime- machines are bound to be run by humans- if the machine doesn't miss it- the human might. Good doctors will.  If you support the screening and the cancer isn't detected- who's neck is on the line? The only person who really loses here is the LFS person. If you recommend that LFS folks dedicated a huge chunk of their already limited time on this planet to lying in cold sterile rooms that make awful noises while enduring sometimes undignified and uncomfortable procedures- with the hope they might catch a cancer early enough to treat it, provided that it is even treatable- does it make a difference in the overall survival? Sometimes hope is the biggest key to survival and I've found that depends on the person. Some people want to know and spend a lot of time taking control of the situation and regularly get every scan imaginable. Some watch the signs closely and go into a provider at the sign of trouble. Some just want it to go away and wait to the very last second and often it's too late. Only one group of these people will a set protocol help to find their comfort and control in a bad situation. But the point is it will help people, so why not?  Because they don't know if it works. Technically ALL cancer treatments are still experimental and few are PROVEN to work. Patients are presented with information and given the choice to undergo treatment. It's a game of odds. I know LFS is rare , it will be next to impossible to get the sheer numbers for numbers sake to "show" that screening works. But the odds are in favor of survival the earlier cancer is detected- this seems like a no brainer to me.There are so many negatives to this situation- let's harness the positive. Let's encourage our best odds.

It's tough enough to have a family history of cancer. It's tougher being told you are probably going to get cancer and not only once but many times- but that's only if it's not one of the bad cancers because those will kill you quickly.  I see why no one wants to say anything- it's a no win situation- so take it back old school. Forget the bells, whistles and fancy names. You have a family history of cancer. Ok, let's watch you closely for known cancers in your family- and take into account other possible cancers. Then you have to trust your gut.  You have to know your body and what is normal and pay attention to things that are not. When Lily had a lump on her leg, my gut told me over and over again that it was not nothing. I've talked with enough LFS survivors who have said the same thing- some lumps didn't bother them and others they just wanted out and those ones usually end up being some rare fibrous or atypical something or other. So when it comes down to it- the best screening method is you. And then you have to fight to survive which in the case of LFS is sometimes a fight to get screened and then a fight to get that paid for. But you would be hard pressed to find many people who won't fight to survive once they have been diagnosed with cancer, I'm saying kick it back a notch and fight to survive before you have cancer. It's not easy, no one ever promised it would be- but it will be worth it.  It is possible to LIVE with Li Fraumeni Syndrome.

Li Fraumeni Syndrome Support Group

Li Fraumeni Syndrome is caused by a mutation to a tumor suppressor gene. In even the best case scenario- a mutation here is not a good thing.  p53 has been called the "guardian of the genome" and plays a HUGE role in making sure cancer doesn't go haywire. It makes sure DNA damage gets noticed and repaired,it makes sure the cell isn't reproducing like a bunny while damaged, and if it can't get a cell repaired- it makes sure the cell dies. It's a pretty cool thing. Except when you don't have it. Then you have p53 envy, you find you have a huge risk of getting cancer- and not just one cancer- many cancers over your lifetime. Kids who have the p53 mutation get more cancers than those who don't and I'm not the first to say- nor will I be the last to say- Kids should never, ever get cancer. It's just not right. That fact, especially when the tumors are brain or adrenal,  is actually one of the BIG flags to doctors that a family might have a mutation like the p53.

I learned about Li Fraumeni Syndrome in the late 80's, early 90's. My brother had just been diagnosed with a brain tumor, months after my cousin had been diagnosed with a brain tumor. An aunt and an uncle were also diagnosed with cancer during these months. Our first thought was- stop drinking the flipping water- but then an amazing article hit the newsstands about these doctors in Boston who were studying family cancers- especially brain tumors. My grandfather died of a brain tumor- so my mom grabbed the phone and started making calls. She talked with a young doctor named Frederick Li who sympathized with our situation, but my brother passed too quickly to be helpful to their studies- there was no biological material. It was mentioned that if my dad were to get a brain tumor- that would be an interesting case study and please let them know. 3 years later, my mother had to make that call. My father was tested, he had the mutation. There were many sleepless nights spent discussing the implications for me and being tested. They let me have the choice. In true 17 year old fashion- I said- um No, thanks, can I go out with my friends? I didn't want to know. I wanted to live, I didn't want to be shackled with the burden of knowing that I was going to die of some rare painful cancer. From what I saw with my dad and brother- knowing vs. not knowing didn't change the outcome one darn bit. That harsh reality came crashing down around me in 2008 when my 3 year old was diagnosed with adrenal cancer. I thought for sure she had a brain tumor. I had gotten a degree in molcular biology, I studied genetics- we talked about Li Fraumeni Syndrome- I never processed that adrenocortical cancers were one of the main syndrome cancers. I had done my research. Before it was Li Fraumeni Syndrome, it was called SBLA- but not in any circles that I was in. It was a wikipedia article that I stumbled on when I was looking up adrenal hyperplasia that brought that to light. It happened to be the day before my son's surgeon called with a referral to an endocrinologist for his pancreas injury-I asked her about my daughter's symptoms and told her our family cancer history and she gave Lily a referral to endocrinology too. This after 2 pediatricians told me not to worry about precocious puberty in a 3 year old- it could happen.

So I called the doctors that studied my family in the 90's and I asked what to do for my other kids, I wanted to know the benefits of testing them. They were supportive and helpful and I also learned about an upcoming conference the following year. It had been decades, but my assumption was this was so rare- there weren't very many other families out there. I wanted to be there. I wanted to meet the others. I wanted to see if they learned to laugh through the tears like my family does- because sometimes laughter is the only medicine.  I wanted to see what progress had been made and where things stood. I wanted hope that my children wouldn't have to watch me die from cancer and I sure as heck don't want to see any of them go through it over and over. At this conference I met others who wanted, like me- to help support each other and work together to find better treatments, screening and ultimately a cure. We are tired of watching our families suffer. We want to help bring together all the different facets of knowledge, research, and experience with this syndrome. We want to be the link the connects the disease to the cure. We are that link. It will take time, and sometimes more time than those with LFS are given. I was so saddened to hear that a lady I met at the conference recently passed. It was agonizing to lose a friend in December who I met because of this disease. But these were two amazing, strong women. 2 women who brought so much love and light to those around them and who both had so much more living to do, but couldn't because of LFS. Since we started in 2009, we have hit lots of bumps and several new cancers in our group. That is the nature of the beast. But through people with Li Fraumeni Syndrome is a better understanding of cancer and through this understanding will be a cure!  If you are interested in donating time to a great cause- check out our support groups at Facebook- we welcome help with open arms. There is one for those with LFS and one for Friends and Family.  But most of all I have to thank my monkeys and my husband who have dealt with a pretty messy house and a scattered mom- but do so gracefully so that I can try to help create something that will do so much good.

https://www.facebook.com/groups/90503981891/