Lily's 6th Birthday!!

We took a trip to the Big Island and celebrated Lily's 6th Birthday there. We got to see the sights, bowl a little and most of all wish Monkey 3 a very happy birthday.

Cupcakes for Class

It was so much fun to make and take cupcakes to Lily's class to celebrate her 6th birthday. Since her birthday falls on Monday next week and the kids are on spring break, I didn't want her to miss out. The kids were so excited, it really is contagious. Bella seamlessly blended herself into the environment and even got to take part in a rousing game of Head's Up 7-Up. What was even funnier was watching Bella systematically put down a whole table's worth of thumbs and no one guessing it was her- despite that she was wearing her rainboots and clopping around like a Clydesdale. I love Kindergarteners and that the effect of sugar on their little systems is akin to crack. Much better to sugar them up and send them home!

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Long Term Effects Of Cancer

A friend just posted a quick note about seeing a mom with a lil cancer fighter on her lap at a school event.  I am not surprised by my reactions, yet they always surprise me. It was equal parts saddness, nausea and relief. I am sad that any child, any family has to go through it- it is not fair. Sad because I know how serious it is and if the disease doesn't kill them, the treatment might. I was nauseous because it's still fresh enough that I remember the stress, the day to day ups and downs and the gut wrenching emotions that you shove to the side just so you can get through.  I feel a bit guilty to admit that I was relieved. Relieved that the memories that sting now are just that- memories. I actually don't think about the what if's too much. Just enough to formulate a basic survival plan- but the thoughts themselves are toxic. 

When people we haven't seen in awhile run across us- the first thing they ask is - How's Lily? Lily is fine- it's the rest of us you should worry about.  I see friends with their out of control children- hopped up on psychotropic meds for behavior problems.  They are searching for answers in all the wrong places.  I think back to a time when I had to choose the lesser of two evils- taking the chance on cancer killing her or the chemo meds and their long term effects. One drug causes deafness, the other heart deterioration, the other can cause secondary cancers, the alternative- death. Not much of a choice. Yet I know parents who have their kids on cocktails of meds because they won't sit still or listen to them. We won't mention how the protocol for treatment requires CT scans every three months and by nature of our genetic mutation- the radiation from the CT should be avoided if at all possible.  Catch 22 much? 

I asked the doc once about long term affects(effects?) potAto pOtato. His response in a nutshell included the pearlly wisdomous bite- not many kids with this tumor type survive long enough to gather data on the long term effects- there will probably be some.  SO when you look at it all big picture-style- you come away being grateful for the imperfect package you have been given- because some people don't get a package at all and you know darn well far too many get awesome deals and don't even appreciate it.

 I sit here watching Lily play Barbies- Currently Barbie is getting ready to invite Ken to her Birthday party. They will fawn over each other, they will dance and then they will kiss.  Her Barbies seem to do that a lot. I started to worry. Is it hormones, should I get her checked- is she having changes?  And then I thought about it- when I was 5. And 6, and 7- Barbie and Ken(which often times was substituted with a GI Joe doll or a more appropriately sized A-team type doll) I re enacted their wedding scene over and over and over. I saved for months to get Crystal Barbie. Her dress looked just like an iridescent shimmery wedding gown. They would wed- go to sleep and in the morning Barbie would have a baby. For awhile it was a mini Baby doll and then finally I procured a miniature baby out of a gumball machine. Really- how important is scale in make-believe land? The point is- she's playing normal and despite my first instinct to over react- I take a minute and realize we are on an appropriate course.

Sure she can be rambunctious. And she can be manic. And she tends toward roid rage at times. But I remember Lily was a less than happy baby with rage tendencies.  Everyone else thought  she was so darn cute and happy, I consider the fact that maybe it's just her personality.  Yep- we called her Bi-polar baby. I admit it.  But there is no way of knowing the cause. I don't even know if it's that important- if I spend less time worrying about a cause I had no control over and spend more time teaching, mentoring, and behavior modifying- the result should be a functional bipolar child. We spent all this time worrying about her being normal, acting appropriately, and fitting in when it occurs to me- all 5 year olds are Bipolar. They are ADD. They are ADHD and oppositional defiant. They talk to people no one else can see, or hear. The have intense moments of rage and/or depression over trivial items.  And they totally sing off key. Lily's missing the higher frequencies of hearing- what are the other kids' excuses? By all counts- not only would they get booted from American Idol in the first round- according to the DSM IV they should all be locked up in maximum security psychiatic facilities for observation. I don't think the kids are getting crazier- I think we are.

The daily reminders of our year long vacation at cancer camp have become routine. It is more like brushing teeth now. They're about as painful too. Lily- did you put your hearing aids in? Lily ,did you hear me? PUT YOUR HEARING AIDS IN! Even the kids chime in- what are you, deaf? Everyone laughs. Especially Lily.  Just like we laugh at  Kiera's weird thumbs and Bella's ginormous butt and Phillip's abnormally long torso. None of these things can be helped, they are who they are and at some point in their life someone will point it out. Now they can laugh at it and move on. It's not so much about making your kids perfect- it's about helping them love their imperfections. Do I love my big butt- well not always- but I found me a man who does....and that my friends is how you deal the cards you are given.

Everyday Lily takes her meds and I have to prepare her school and our friends for emergencies. I didn't think about her playing soccer and the can of worms it opened regarding potential injury. Not only can she not wear her medic alert bracelet at the game- she might actually get hurt. Her coach works 3 jobs and coaches 2 teams- so practice has been less than consistent. Before I know it, we are to our first game and I never told anyone that she is adrenal insufficient. No one knows what it means and it's a bit of a pain to explain and when you start mentioning unconsciousness and shots- people get all wonky. I tackle the conversation with the team mom and she is very supportive. I never plan on sending Lily to a practice or game without my being there, so it's not a problem. Until her first game. Which fell on our anniversary.  We are going to be on the other side of the island. I have all the ducks in a row, everything is in place. I nervously text our sitter every 5 minutes during the game. All is well- she did great- she scored 3 goals and had fun. When I get home, we watch the 13 seconds of video from the game. It's not a lot- but I rank care and keeping of the magical creatures over photographic evidence- and all were cared for very well. I notice that she skips up and down the field. I laugh- because that's Lily. La de da. I show Phil. Yeah-he says- I noticed that at practice too. I wondered if she would have any long term effects from the leg surgery- but she adapts well. 

It hits me suddenly, I hadn't even thought of that. I am overcome by the familiar feeling of saddness, nausea, and relief.  I hadn't attributed the skipping to her leg surgery. I just figured it was her. Maybe it is.

Permission from Death

Stop looking, stop worrying. If it is death you fear, fear no more. I found it, I should say him. He who gives permission to die. Many of you may be familiar with the shootings in Arizona where Congresswoman Giffords was shot with many others. Of the 6 that died and 14 others that were wounded- I wonder if their families' will seek solace in the fact that the man who controls death is near. Dr. Rhee, a former Navy surgeon declared that Giffords has a "101% chance" at survival and that "she will not die. She does not have that permission from me."  I do so love me a surgeon with a complex. I remember one from the Columbine shootings all too well. Appearances on the news and programs like Oprah only serve to exacerbate the egomaniacal tendencies. Although I am not the authority on surgeons, I have had quite a bit of experience with them- the good and the bad. Either this man has my sense of humor, which is entirely possible- or he has a God complex- which is entirely probable. Either way- I was compelled to put my 2 cents in......here's the article that piqued my interest followed by the actual email I sent.


http://www.tucsonsentinel.com/local/report/011111_giffords_breathing



Dr. Rhee,



I recently read your much publicized quotes regarding Mrs. Gifford’s status as having “101 percent chance of survival” and that she doesn’t “have permission from you” to die. I hope these comments were taken out of context, as they often are- and perhaps you have a bit of a sense of humor in dealing with the media. If that is the case, read no further and continue your important life saving work . If she has a 101 percent chance of survival- you either are making a joke of the gamble in “predicting” survival or are cockier than a spaniel in heat. I also seek to introduce myself to you as I have a genetic condition that predisposed me to many cancers and an early death and if death requires permission from you- I would definitely like to be in your acquaintance.



I remember the case of a certain retired Army surgeon who treated gallantly many of the Columbine victims. I have great respect for both soldiers and surgeons alike. To be both is awe inspiring. I also personally watched the downfall of that surgeon who thought himself bigger than life. He thought he could do no wrong and would be beyond reproach. Although a fine officer at the time and a very brilliant surgeon once- he now holds no medical license and is hard pressed to find someone to either insure or hire him in any capacity. I urge you to temper your brilliance with a little care, as no man is immune from downfall, or death.



Regards,

Jennifer Mallory

12 Days of Sickness

On the First Day of Sickness, my Kiera said to me- I don't feel well as she shared her food and drink with the other three. So day by day the sickness progresses and my defenses fail. Phil laughed as I made him do shots of airborne with me at Thanksgiving- not the livin it up mommy-style he was hoping for!  I think the orange airborne is slightly less offensive- but the reaction is always the same- mmm orange(or berry, or lemon) not too bad- gaaaaaag. So far I am ignoring the tickle in my throat and the headaches. SO in honor of my little germ factories.....

The 12 Days of Sickness

12 Coughs per minute
11  Loads of Laundry
10  Throat Losenges
9    Needs Needed
8    Eyes a watering
7    Sighs of exhaustion
6    Tablets of airborne
5    Cold n coughs
4    Kids whining
3    Hours of sleep
2    Days out of school
1    Tired mommy

Lily's First Field Trip

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The Ties that Bind- Scissors anyone? anyone?

The difference between friends and family is that you get to choose your friends. It's not until the we embark on this fun little journey called marriage that we get to choose our family. Even then, sometimes you take the good, you take the bad, you take them both and there you have....the facts of life. We have been in the military world for over 12 years and along the way have met many a friend we now label family. They are fortunate enough to not have to share in all our crazy genetic afflictions but are common soldiers in the many social ones we face. Thrown together by chance, staying together by choice. Friends you would drive over 2 state lines(albeit close states lines which technically lead out of one state and back into the other) just for a hug. Family drives 5 hours to give you a hug and then 2 hours to take you over 2 state lines so you can pay it forward. Ah the ties that bind.

When Lily was going through treatment we were very lucky to have a solid support network despite being across an ocean from any family. Our ohana here became friends and neighbors touched by one tough little monkey and the injustice of it all. Family across the ocean did what they could, which was usually sending gifts. I blogged to keep people informed and for my own therapy. Sometimes I worked through and issue by the end of a post, sometimes I just merely realized there was no resolution. You really learn a lot about other people's character when you are facing the toughest times in your life. There are those who try to make it about them and those who would never hint that they had anything but mundane going on in their life so you wouldn't have to worry about one more thing. The Li Fraumeni Syndrome conference was a great opportunity to reaffirm I am not alone. More than one person shared my sentiments. There are Givers and there are Takers. Both have had something valuable wrenched from them- yet the true character trait emerges in how they choose to act from there. You find those who never had support and never want anyone else to have to know that feeling and you have those who can't get past that they never had support. They stall in the crisis, unable to evolve.

We all have these moments every day. Some moments are bigger than others, but each one is the glue that holds our true character together. Whether the glue holds or not is up to our choices. We have choices every day. What to eat, what to wear, how to act. These choices affect what we look like, how we feel, who we relate to. When things don't pan out exactly as planned- how we react and how we react to others' reactions also tells a lot about us. Sometimes we make mistakes. Sometimes we make sacrifices. But mostly we make choices. Sacrifices and choices have gotten confused. I hear people talk a lot these days about all the sacrifices they make. The definition and use of the word sacrifice has been so watered down- it is so clear you no longer see the choice in it- but it is there. A sacrifice is

 4 dictionary results on dictionary.com





sac·ri·fice   /ˈsækrəˌfaɪs/
[sak-ruh-fahys]

noun, verb, -ficed, -fic·ing.

–noun

1. the offering of animal, plant, or human life or of some material possession to a deity, as in propitiation or homage.

2. the person, animal, or thing so offered.

3. the surrender or destruction of something prized or desirable for the sake of something considered as having a higher or more pressing claim.

4. the thing so surrendered or devoted.

5. a loss incurred in selling something below its value.

6. Also called sacrifice bunt, sacrifice hit . Baseball . a bunt made when there are fewer than two players out, not resulting in a double play, that advances the base runner nearest home without an error being committed if there is an attempt to put the runner out, and that results in either the batter's being put out at first base, reaching first on an error made in the attempt for the put-out, or being safe because of an attempt to put out another runner.

 
Oh, I see why there is confusion- it ranges anyewhere from the offering of a life to the gods to a baseball play.  But my point is this, although all sacrifices are choices, all choices are not sacrifices. To make a choice that benefits you to the harm of someone else is not a sacrifice. It just means you are self centered. A person makes a sacrifice by working 3 jobs so that their children can have a decent education. They are sacrificing time with their children and at home for the betterment of their children's future. A sacrifice is not working 3 jobs so you can drive your kid to school in a mazerati. That is a choice.
 
When Phil made the transition to the Guard, we made a choice.  In that choice, time with our extended families was sacrificed to having him home more than he would be in the active duty world. It was the right choice for us, although I'm pretty sure my mom would disagree. I started the blog for her. I started because there weren't enough hours in the day to chat on the phone and she so desperately wanted to see all of our day to day trials and tribulations. Apparently that sh@! is entertaining from the grandparent perspective. I get that, especially getting to see family and friends going through the changes of having a new baby at home. It seems like that was forever ago.
 
When Lily went through treatment, the blog became a lifeline to our families and friends. I didn't have to make 50 calls, I just posted a quick update. When we were dealing with the effects of chemo and couldn't find the pull-ups that held the most- boxes of them showed up on our doorstep. When her hair began falling out, hats from as far as Iraq were delivered- specially embroidered with her name and Pooh Bear. A friend ran a book drive and a stack of books taller than Lily herself became a library of quiet entertainment for those icky days relegated to the couch. Neighbors helped shield the other kids from day to day craziness and long hospitalizations. We learned who our true friends were and became forever endebted.
 
There were friends who didn't get the memo and felt that day to day trivial "crises" were things I needed to know. And there were quite a few we never heard from at all. It is always better to hear- we are thinking of you than nothing at all. I would be lying if I didn't say how people acted during this time did not color how I react to them today. I am aware that my perceptions at the time were severely stressed, but also pretty close to dead on. When you are ultimately stressed the triaging of unnecessary occurs and that includes relationships. I realize that I am not innocent, that I have not been in contact with many of my good friends as often as I should be. But I also know that my true friends understand and either make the effort when they can or accept my effort when it is offered.
 
I have also learned that life is too short and too precious to harbor certain feelings. Oh if it were only easier said than done. So it is in these times that I choose to eliminate certain relationships from my day to day life- for they were really never part of it. There are growing pains involved but I do know that for every closed door there is always an opened window and that window may be on the side of the house with a delightful breeze. The true irony also lies in that as I stand here with a pair of scissors those whose ties were severed will never truly know because they cannot see past themselves to feel the tie that could have been.

Mutants Unite- Li Fraumeni Syndrome Conference

My feelings on the LFS Conference




The excitement electrified the air. People were telling jokes, laughing and filled with the expectation of finally finding answers to questions they had been waiting to hear. Some had been waiting months, from the time they announced the conference, others had waited years, from the time of diagnosis, and a very few of us had been waiting decades to learn that there was a light at the end of the proverbial cancer tunnel. It was our turn- the Last Families Standing. Some had scars they would show off like badges from a hard fought battle that ended in a draw. All had emotional wounds masked by laughter or anger. The division was clear. There were 2 sides to the auditorium as there were 2 very divisive groups brought together by Li Fraumeni Syndrome.



I was disappointed that I was so late getting into town that I missed the meet and greet dinner. Finally, for the first time ever, families who have this rare hereditary mutation were together to share their stories, their experiences and information that had been garnered by years of living, dying and fighting this cancerous monster. As I checked into the hotel, I noticed two separate tables of people in the bar. One sat heatedly discussing battles, throwing around words like cells, treatment, answers, protocol. The other was laughing like a group of old friends, comparing scars and number of cancers survived. These were my people. United by mutation, loss and fear. Surviving through determination, strength and humor. For years I tried to find other families with this mutation. Any others. I asked about support groups, I asked about contact lists. There were too many privacy issues. It’s not something you can stand on a street corner with a sign and get answers about. It’s too rare. There are an estimated 40 families in the US. Based on the fact that each family got 2 representatives- there were 70 family members at dinner- that’s about right. All of the people present were somehow connected through these few institutes represented at the conference- there are others out there. They should have been there. But it was a start. You can’t be too picky when you are starving and you get thrown a bone, there might be some marrow you can suck out of it. And that’s what we are expected to do.



I glance at the room filled with fellow mutants and I recognized a face from the Facebook LFS group, a fellow military mom in this fight. I walked over and introduced myself. We had corresponded many times over the past few months regarding screening protocols for kids, travel arrangements for the area and general health. She’s recovering from her fourth cancer. And amidst her struggles, she does what we all do- she takes the punches all the while trying to protect her children. That’s why we all are there. We are trying to protect the ones we love as we watch each one in turn fight the battle against the cellular monsters trying to invade us. Who will try to beat us down before they kill us. It takes the ones we love and leaves us alone to ponder the meaning or possible purpose for it all. They dangled the proverbial carrot in front of us with key words like current research developments and family support. We responded with enthusiasm.



Chit Chat turned to hours and we got the summary of the dinner we missed. It was heated, sheets of concerns and hopes were written and taken to conference organizers. I was flanked by my aunt and cousin, both also looking for a ray of hope. We all laugh as common jokes surface, a dark humor unique to those faced with the repeated blackness of invasive procedures and debilitating illnesses. We learn the groups split off after dinner, some driven by anger- demanding answers- demanding action some driven to be near other who share the common journey. The stories are all familiar, yet the names and types of cancers vary. Children taken before they are old enough to understand, parents lost, siblings scarred, spouses traumatized. Yet we find a reason to laugh, because our lives have been filled with so much pain and sadness- it’s the only way out.



The NIH is like a compound. Security is tight. One body cavity search shy of airport security. We manage to make it through without any major catastrophe despite my aunt yielding a particularly fierce looking set of tweezers. We find our way to the conference hall and settle in for the day. It’s a full house. The room has stadium style seating and a divider down the middle. We cluster in groups of new friends we met the night before. We each are given a binder of information and I quickly scan it. With the exception of a couple papers on recent studies, there is no new information. It is pretty basic stuff. I am mostly just enjoying the idea of it, I know it is a baby step process. What happens today could be the beginning of something great for us. The Introduction is given by Joseph Fraumeni himself. And so it begins. The conference starts with a bang. Three family members are introduced to speak on patient/family perspectives of the disease. The representatives are well chosen- each tells a story that rings true to every family member in the audience. There are tears, there are nods of understanding and there is applause for the strength it takes to get up there and bear your soul for all to see. A father who lost a child and has another facing multiple cancers pleas for answers and demands a cure. A mother eloquently takes us through decades of monsterous loss and heartache- questions unanswered and hope that someday this will not be the case. A husband who lost a wife too soon and still faces the after effects of the disease with his three children. We know the stories. We are the stories. Each one of us bears these heartaches and more. This is why we are here. We are finally being heard.



But then the focus shifts to the clinical aspects of the disease. Most of the information shared is common knowledge among the families. Most of us at one point or another have enlightened a physician with this knowledge. The day is already going fast and the speakers are rushing to cover all of their information. I am grateful for the binder of notes, yet I have filled up pages of my own- just so I don’t forget. We now are hearing from representatives from other countries and how they screen for LFS cancers. Each country has slightly different protocol. I begin to think it would have been better for all the clinicians to have met first. Some of the information is redundant, and there is never enough time for questions. I am very interested in the data from Brazil. There is a higher than “normal” incidence of LFS in a small community there. I already knew this because when Lily was diagnosed with Adrenocortical Carcinoma, I contacted a leading researcher on the disease- Dr. Ribeiro. He had extensive experience with treating this rare cancer because they found a hot spot in Brazil with over a hundred cases. And I sat there wondering- why? Why this community? Is it the water? Is there a radioactive source nearby? What? Wouldn’t that be a fabulous place to research and find answers? It led to the discovery of a unique mutation related to the p53 mutation and that was the first new piece of information we had received and it was almost noon. My stomach rumbled. The guy next to me continuously played on his phone and didn’t even bother to turn the incessant beep off. I wondered why he was even there. Imagine my surprise when he walked down to the front to speak. He was a researcher- appealing for funds. Yet he provided no new information. The subject he talked on was the psychosocial implications of testing and screening children and teens. If you have been on the LFS circuit you know this is one of THE push button topics. There are people out there who have said it is flat out irresponsible to reproduce with this mutation and I tend to disagree. There are quite a few people out there who are not equipped to meet the normal demands of parenting and so being presented with a child with cancer, multiple cancers or a child’s death is not at all feasible. But it is reality. There are millions of children out there without LFS who get cancer. Ask any 30-40 year old who has yet to get cancer in one of these families and we’ll tell you it sucks- but I am glad to be here. I am glad my children are here and I know that if I don’t make an impact in the LFS world- they will. I know that others have different feelings and that is Ok. I also learned that having a background in genetics and biology helps me to look at this syndrome in a more practical light and most people do not understand the intricacies of genomics,heredity, tumor suppression or biological pathways. It is not as simple as find the gene, fix it and you are cured. Reasearch takes decades. We can only hope that our children’s grandchildren will be so lucky as to have better treatments- I do not think they will see a cure either. I hope I am wrong. But needless to say, the mere glossing over of a MAJOR topic with over generalizations and suggestions to “do what feels right” did not leave me with any warm fuzzies. Perhaps I was hungry. Perhaps the lady 2 seats down crunching away on her second bag of cornnuts was grating on my last nerve. But I felt the important topics were being neglected. I hoped the after lunch speakers would provide some of the direction I was looking for. Latest and Future Research were on the docket as well as splitting off into groups for Support and Advocacy.



Lunch came and went. Even that was rushed to get to the next group of speakers. I and quite a few others had supplies of caffeine for the topic of research. Important, vital, imperative research- but daunting and very difficult to comprehend even for those of us with education in the field. There have been some good advances made. But mostly I learned that there is so much yet to still learn about p53 and it’s role in all this. The implications are there are quite a few other factors that researchers haven’t uncovered yet that come into play. It’s tough to hear. And really that’s why we are there- to put faces to the work. Our presence emphasizes that the research day in and day out is important for our quality of life. The day is rapidly coming to a close and I don’t feel like I have yet found my A-ha moment in the mix. We are split into groups- Families and researchers. We begin our secular discussion. I look at the topics and speakers. With the exception of John Berkley(who moderates the MDJunction Forum(www.MDJunction.com- Li Fraumeni Syndrome) there is no actual talk of support or advocacy. There are Advocates for other groups there, but even the Genetic Counselors are not present. How can there be support or advocacy without those trained in this field- those with experience dealing with the complex emotions and trauma that lives filled with multiple cancers and deaths often occurring concurrently? I then realize that they ARE there. That WE are the best support and advocacy for our group. The primary agenda that is given to us is to set up a Patient Organization. It is within the first 10 minutes here that I have my true A ha moment. We are not here so they can help US. WE are there to help THEM. This does not sit well with me. I notice several people leave. I almost wish I had the excuse of a flight to catch so that I could bail and what now feels like a time share set up. The 3 speakers talk exclusively about the technical aspects of setting up a non-profit organization in order to raise funds for research. 2 of the patient “speakers” from earlier are rallying for blood samples to get off to the sample bank for research. That is the first step they say- that is the first step towards a cure. Well if that is all that was wanted- The NIH could have saved themselves thousands of dollars spent by gathering us there and just sent out a letter requesting samples. We would have all given them. We all want answers. We are the best resource and we know it. Giving even 12 vials of blood is minimally invasive or inconvenient compared to the indignities we all suffer in the name of preventative medicine. I wanted more. I wanted someone to say- we hear your stories, we know this has been awful and you have scars to show for it- we are here to help you. Instead we get- here are board of directors members who can tell you how to raise money for our research. Yes prevail upon the people who have lost so much time and money already to this nasty disease. Many of whom may not be here next year this time, THAT is the nature of this Syndrome. I want to help. I am happy to help, but when I said we were looking for support and advocacy I was kinda thinking let’s set up a formal website with all the information and contacts in one place. A place that offers us a chance to connect with others who are also soldiers in this battle. That was the single most important benefit to this conference for us family members. The absolute best part was finally being surrounded by others who know what it is like to lose a family member to cancer, and then another, and then another and then another. Being surrounded by others who feel the impossible weight of possibly being the last of their family line. There was no offer for counseling. No offer for support. Just insurance companies lining the halls to hand out information when we were on breaks. AM I the only one who finds that utterly ironic? Of course there was the odd joke and conspiracy theorist who pointed out we were all being photographed and to be careful drinking the water- but it didn’t seem so out of line as the last meeting of the day.



I don’t like politics. I don’t like pretenses. If dealing with Li Fraumeni Syndrome has taught me anything- it is that Life is too damn short for bullshit. There is a HUGE need for more research on Li Fraumeni Syndrome. Despite the “rareness” of this syndrome and the “few” numbers that it affects- we are THE key to understanding why all cancers exist and what can be done to stop them. We want to help, we will help raise money- it is a very important cause and I am all for it. DO NOT BULLSHIT me. Do not draw me in under the pretense of family support and advocacy- fundraising for research does NOT fall under that umbrella. They are 2 very distinct things. Family support is aid, whether it be emotional, physical, educational or financial. Putting us all in the same room is a start- but you had resources at your disposal to help us, yet the motivation was money. It is a two way street. We are happy to help raise money for your research, but what do we get in return? My daughter has one of the most common tumors in Li Fraumeni Syndrome. It is also one of the tumors with THE worst prognosis. There is a village in Brazil packed with these tumors and people with LFS. This town was discovered over 20 years ago and there is no cure there yet. P53 was discovered over 40 years ago and we still don’t know how its exact role in Li Fraumeni Syndrome plays out. There are too many cancers to effectively recommend a single screening protocol that is both reasonable and successful without severely impacting our already shortened quality of life in a negative way.



I know time and funds are limited. I would have liked to see more quality of life discussion and interface between counselors and families. Most of us just want to be heard and understood. The biggest benefit was meeting and exchanging contact info with other LFS families. I hope that through these connections the true support and advocacy will be found that we all were looking for and when those needs are met- we will be in a healthier state to help raise money to find a cure for this fun filled not at all life altering hereditary syndrome.

The worms crawl in, the worms crawl out, the worms play penochle.....

Everything we need to know can be found in nursery rhymes. A week ago, after checking a few concerned emails- it occurred to me I never posted on Lily's health status. Insert hysterical laughter. Make that maniacal. Nope scratch that- sleep deprivation is messing with my mind. And don't scratch that- go wash your hands.

Lily's scans were fine. Nothing to report, everything consistent. The spot matches a bug bite and they will check it out again next round. I called last week to double check because Lily has been experiencing some itchiness and some other symptoms and I wanted to rule out major issues before we try and tackle little ones.
***Warning***Graphic stuff ahead. Not for the squeamish or OCD.


SO the itchiness comes and goes. I thought it was yeast. It's not yeast. The itchiness seems to always be the worst in the evening. Bella's been waking up too. I thought it was because Phil is gone. Something keeps waking her up consistently. Oh nooooo. This whole act is familiar. Somewhere around the inception of this blog we had an episode with worms. No, no, no, no no. Flash back to Port a Potty incident at air show. Somebody put a fork in me. Now. Please. My bum starts itching just thinking about it. I grab a flashlight and sneak up to the girls' bedroom late Friday night. When I said parenting was messy- did I mention the whole bit about pin worms? No need to teach anything else in sex ed- just provide all information about these bad boys and that they Looooooooove preschoolers and Kindergarteners because this group of thumbsucking, orally fixated little germ factories also suck at washing their hands properly. Be sure to highlight the part about how they like to leave the warm cozy nest of the human's small intestine at night to lay their eggs around Uranus. So the poor little thumbsucker itches away in their sleep then sticks their hand back up in their mouth. Life cycle propagated. 

Sometimes if you are real quiet , you can sneak up on them commando style. And you will actually be surprised that this particular set of night ops doesn't even wake the natives. It's a bit of a balancing act, holding the flashlight in the crook of your neck to get proper separation.  Quite comical- one of those times having a spouse around would be beneficial. And I spot the lil bugger running for the hills. Oh crap I'm gonna be sick. I might take the time to be sick if I run out of bleach before morning. I check Bella too- that's another affirmative. I don't know whether to scream or cry. Somehow this is a commentary on my parenting, my hygiene, and everything about me. I could give a care less that this is described as the most common parasite in the world and estimates go as high as 75% of children having them. I don't care that after our first bout of them( when I vowed to never let a handwashing go unnoticed) that one of my good friends - who also happens to be one of the cleanest humans ever- told me she knew all about them and how to look for them. what?  They are completely disgusting, but pretty common I was told. Multiple websites describe them as a nuisance and that the most damage occurs in the mind of the parent. You can say that again. I have distinct memories as a child, peering into my best friend's poo to get a glimpse of the souveneir she brought home from the zoo. There is something completely and absolutely unnerving about something living in your rear. It's wrong. It's even more unnerving to have physical proof that these little buggers are alive and well in my children. I debate just up and moving. I think buying all new personal effects is probably easier than dealing with the trauma of fighting an enemy you can't see- those blasted little eggs.  My bum itches just thinking about it.

I spend the entire night wiping down every surface in the house with bleach or lysol. I am dizzy as the 3rd bottle of lysol runs out. I start laundry in the hottest temperature possible and switch the dryer heat to highest. I know that the only thing known to kill the eggs are UV and heat. I throw stuffed animals and area rugs outside.  Everytime I pass a sink, I scrub my hands. They are starting to burn. By 2 am I am literally running on fumes. I decide to try and get a couple hours of sleep. I know we will be up well before the clinic opens at 6am. At 4 a car alarm goes off- I vaguely recollect thinking it sounded like my car and hope the thieves get their come uppance with a nice case of thread worms.  I don't remember this thought until morning as I am loading the girls into the car- which was still there. It then occurs to me that I have a whole nother realm to disinfect- the car. Where are thieves when you need them?

I was up at 5 stripping my bed and showering. The girls peek in to see where we are going- I quickly steal the sheets off their beds. I hosed their room down with lysol the night before and wiped surfaces- but now that I pulled the sheets up- I feel the need to do it again. I know the lysol won't kill the eggs- but it makes me feel like I am doing something. Like scrubbing every reachable surface in a house isn't considered "doing" something. I am not good  with sleep deprivation or parasites as it turns out. It is late morning where my husband lives and I call to tell him what's up. He is relieved. He thought something was wrong. Oh something is wrong- very very wrong. He backtracks and explains this is easy- it's curable. Easy? Easy!!??? My back is spasming, my stomach is in knots. I have a cough- which I'm sure is from huffing lysol or from parasites who are too stupid to find their way to my a@! and got lost in my lungs. I wonder how 1 person can be expected to launder 5 sets of bedding plus towels, clothes, blankets, etc- daily as well as continuously monitor 4 sets of bums and hands while decontaminating every surface they touch for the next week in addition to all my other daily jobs. Mind you each time they go to school - I have no control over where they stick their hands. I'll trade you your 2 social dinners and afternoons of football for my weekend.

We get to the clinic behind a young man who apparently fell and split his chin open. I wait for the desk clerk to act disgusted as I tell him why we are there. He nicely informs me that he will check everyone in so everyone can be treated. I wish I didn't know the procedure to this. Not how I wanted to spend my Saturday. The doc is nice and despite his reassurances that I am not a failure at parenting, hygiene, and life- I feel disgusting. He continues to tell me that this really is common. Especially in the girls' age group. We probably won't need a second dose- but check in a week or 2 for evidence of new hatchlings. Awesome.

I stop by walmart to get industrial sizes of bleach, paper towels, soap, disinfectants and of course more lysol.  I brief the children on the operating procedures for the next week- at a minimum. I hand out meds. We shower in the morning. This washes away any eggs laid at night. Towels go directly in the hamper. ALL dirty clothes are put in hampers. Undressing only happens in the bathrooms. Any time you itch anything- wash your hands. Every time you go to the bathroom- wash your hands. Before you eat- wash your hands. When in doubt- wash your hands. Only use paper towels for now. Notify me immediately after BM's so that I can disinfect the bathroom. Sheets will be washed daily- do not fluff them. No one wears skirts. Or night gowns. Shorts and underwear are worn at all times. Bella makes a point by immediately pulling her shirt off. She smiles a goofy smile as I glare down upon her. I know she is suspect #1.  I know she will be my biggest challenge in this ordeal. I begin round 2 of disinfecting and continue to tackle the mountain of laundry. I don't even want to think about our water or electric bill this month. This is a recycling/conservation nightmare.  I read about homeopathic cures. Apparently garlic works- I put 5 cloves in dinner. Unfortunately it is supposed to be used as a suppository. Um no. I'd love to hear Lily explaining THAT one to her teacher. A night in police custody is kinda sounding like a vacation right now. I'll stick with the traditional methods. The girls are outside roasting marshmallows on sticks over an invisible campfire they set up on my living room rug. I want to throw buckets of bleach at them, but realize that would be wrong. It would totally stain the rug.

Love Bites

I'd have to say I've been dreading the scans for awhile. Well over a month. Probably close to 3 months. It was right after we finished her last scan, of which I thought we wouldn't have to do again for 6 months- and her doc kindly corrected my thinking by saying- oh no no no- we need to scan every 3 months for a full year following chemo. yaaaaayyyy.  Oh well- it's just another year. It's really only 4 scans. And 4 sedations. And 4 days spent at the hospital. Well 8 if you count having to come in for the pre-sedation physical and the follow up. But it will get better and that was my line of thinking right up until I saw the radiologist with 2 students in tow- buzz on into the MRI suite. Crap.

It was an early morning, 0530 out the door to get to the hospital. As much as my stomach disagrees with the stress, I realize that in a few hours it will be over.  Lily talks nonstop in the car about this and that- she is either as nervous as I am or sensing my nerves. She's got her grandfather's personality- she talks a mile a minute when she's nervous. I am just thinking how much I miss him when traffic stops. I sigh and survey the cars around me. To the left, the windows are too dark to see, I assume they are picking their nose. To the right is a woman talking on the phone. I metally lecture her on the safety issues.  Front right is a truck with something hanging out the cab. I am grateful it isn't a person like I often see here. I recognize the shape. It's a yellow floor buffer. I smile- it's a sign. I would often accompany my dad to work on Saturdays in Toledo and then on business calls around Colorado, I knew the machine.  It's not something you usually see in the back of a truck and for some reason here it was. Call it coincidence, I feel the warmth almost like a hug. Sometimes it's a rainbow, sometimes a butterfly- sometimes an industrial floor care machine that reminds you that there's something greater to the plan and to ride it out.

One of the enormous benefits to arriving at the hospital at this hour is the abundance of parking. Three days ago I wasted 40 minutes of my life waiting for parking. I thought about calculating how much time I've spent waiting for a parking spot at the hospital, but realized it would be too depressing, so I didn't. I just try to leave extra time and plan on visiting with our nurse friends if by some rare grace we find a spot in under 30 minutes.  I could waste more time being angry about it, or I could adjust and find a way to make it work. I spent the time filling out a comment card online about the insufficiency of parking and for question 7. No. No it definitely NOT meet my needs in a timely fashion.

I get Lily checked in and it occurs to her that she has to get a poke and she no longer has a port. She was familiar with that routine, this is new- different. She does not do well with different. I start preparing her for how it will go down, incorporating some of the techniques I saw Miss Julie use time and time again in our early days of chemo. I don't promise that it won't hurt, I know it probably will- even with the numbing cream. I can promise that it will be quick. The anesthesiologist asks if I would prefer to dart her. No, but I would like to take some of those home with me. This is something she is going to have to do, the less additional chemicals we pump into her and the quicker she learns it's part of her norm, the better. She asks if it would help to call the child life specialist down, of course. Miss Wendy is paged.  We play in the playroom while the numbing cream works. Pretty soon they are calling us over to put the IV in. She is chanting - I don't want to do this, I don't want to do this.  The nurse is trying to distract her and they are looking at a picture she drew in the playroom. She sees the needle come out and her eyes get big, as if on cue- Miss Wendy walks in. Lily is distracted by the greeting and her nurse takes the opportunity to poke her. She yells at him and 2 little tears escape. I ask if it hurts right now and she pauses. NO, but it really really really hurt when he poked me. I know- but it doesn't hurt now, it was a quick hurt- now you will be ok.  She nods.  Within minutes she is out cold and we walk down to radiology.  I give the anesthesiologist my number and ask the MRI tech which scans they are doing and how long to expect. They are doing full body , brain and abdomen... it's gonna be 2 hours. We just did brain. I wonder why they are repeating it this time. Well, she's sedated anyhow, better safe than sorry. The anesthesiologist asks if I had breakfast. Ah, my cue to go.

This is the worst part. Knowing that in the next 2 hours we will be relieved or crushed. I need to get hearing aid batteries and a flu shot. No time like the present. I go upstairs, grab the batteries and wander over to immunizations. It's a mass vaccination day. There's a line. Just my luck. Oh well, at least they will have plenty of vaccine and it's 0830 so they won't be rationing yet. Or so I think. Two doctors ahead of me are discussing the benefits of shot v mist. Everyone I've talked to says they feel crappy after the mist. I generally don't like the flu vaccine anyhow, but when Lily was in treatment- her nurse pretty much told me I needed it and went and got it for me. That kinda changed my view. I figure with Phil being gone- I should try and avoid the flu if possible. The doctors are doing the usual bantering pros and cons of each. I have already decided on the shot. The tech informs me that unless someone in my house is immunocompromised- um duh- I have to get the mist. I knew I should have checked those boxes dishonestly. I explain our situation and they say unless she had a bone marrow translpant or organ transplant I am stuck with the mist. Really? Yeah you can blow it out right away if you want. Just a little will do the trick. Seriously? Does anyone else see how ridiculous this is? Yes, but we have a shortage of shots. You are having a mass innoculation and didn't plan on having enough supply? She starts in on how vaccinations are made- I put my hand up- spare me. Mist is better than flu- I guess. If I could get a damn signal I would be filling out a customer satisfaction survey right now. Looking back I should have demanded an ice card and pen and filled it out right there with mist dripping out my nose. Part of me realized it was the stress of the day tempering my attitude.  The tech squirts the mist in my nose and I feel it running right back out. Did it get into your throat? Um yeah, sure. I can give you more. Um No thanks. I wipe away the trickle and she goes for the other nostril- I don't even bother tilting my head.  I leave and head right for the bathroom and blow the offending nonsense out. I wonder at the efficacy of any of this.

By the time I get to the shoppette I feel dizzy, flush and completely woozy. Apparently a little totally does the trick. Maybe I'm just hungry. I grab a book, fruit plate, tea with vitamins and a bottle of multi vites just for good measure. I need air- I pay and go outside. The sun feels better. I chug two vitamins with the tea. Now I won't know if the stomach upset is flu, vitamins or stress. I look at the time- all of my errands took less than a half an hour. An hour an a half to kill. I don't like being far from the scan so I absorb a little vitamin D and go back to the bowels of the pink castle of despair.  I read for awhile. Watch 4 other MRI patients come and go. I feel like one of those movies that they time lapse waiting with people traversing by.  Two guys talk football and blowing various joints out and I glance at the tv. No wonder they are not watching it- it's an infomercial on the ugliest looking full coverage bra I have ever seen. I go back to the book. Then a familiar face rushes through with 2 students in tow. Dr. Rooks. The pediatric radiologist. She is a wonderfully nice, smart woman- my experiences with her have been bad. From bad pancreas to adrenal tumors- if you see her- it's not a good omen. Maybe she's just reviewing the scan before they call it quits- they do that- it's also a good teaching opportunity and she has two students in tow. But tumors are also good teaching opportunities. Damn. Damn. Damn Damn. I try to read but realize I am just looking at the words while I wonder the best way to lie to my husband that everything is fine. Since I can't lie to him, I am actually just trying to lie to myself for awhile. I feel like my bad feeling is justified, but I wanted to be wrong. I am a worry wort. The anesthesiologist pops her perky red noggin through the window- we are going to rescan her leg- it'll be a bit longer. I look at the time- it has been 2 and a half hours already. Here we go.

A little while later they roll the gurney out of the room and we are off to CT.  We pass a gurney with a woman who is unconscious, her husband obviously worried.  We exchange sympathetic smiles. I settle into an unoccupied row of seats and I watch two kids color quietly without supervision. I am impressed by their behavior. My kids would be having a WWF event between the rows of seats or trying to turn it into a track and field event.  Their dad returns, it's the man I passed earlier. Sometimes even kids know when something is wrong and just shut up and color.  I say a silent prayer for them and Lily is done. In the elevator I pick their brains. I know they know what's going on. I am told there was a spot in question on her leg, it probably is just a bruise. We look at her leg. There is a small bug bite she scratched open. surely the MRI wouldn't pick it up? They are very sensitive she says. 

It's almost noon. Lily is snoring away. I would rather her sleep for a lil while after sedation than cry, but I feel gross. Darn Flu mist. If I get sick I'm dropping my kids off with that tech in immunizations and finding the nearest treatment room to occupy.  Lily starts to cry. She has to pee. I lift the covers, it appears that she already has. We get a bed pan and she is screaming how big girls go on the toilet. She lapses in an out of consciousness and fotunately her body takes over when she is asleep- unfortunately her brain doesn't get the memo and she screams everytime she wakes up that she will only go on the toilet. I have a bed pan that proves otherwise- but I know that under NO circumstances will I win this arguement. I let her cry and soothe her the best I can. This goes on for an hour. She buries her head under the sheet and pushes Pooh away. It's not Pooh's first scan, his feeling aren't hurt.


 Finally she has a popsicle and we convince her she can stand so we can go home. The nurse brings her a pair of hospital pants. I laugh. She begins telling him all about how she will NOT wear those pants. She decides she still has to go to the bathroom. We take her, the nurse waits patiently outside while Lily berates me on multiple levels. She does not have to pee. We stay there for a half an hour. My head is throbbing and my throat hurts. I cough and wash my hands for the 85th time this trip. She finally decides she is done trying. I hand her toilet paper which she throws at me and yells that she DID NOT pee. Awesome. So I look at her in her little green eyes and tell her I don't care how brave she is and what medicines she's on and how icky she feels there is no excuse for being rude. She hugs my leg and says sorry mommy, I just want to go home. Then let's go. The nurse has the paperwork ready to sign and says to follow up with her doctor. You betcha. We are out.

We miss her doctor by five minutes. Which buys us a trip back in on Friday. I am almost grateful for the flu mist because I feel so icky thursday night , the only option is to sleep. I take her in Friday and her doctor examines her. He starts grinning and tells me this was exactly what he was hoping to see- the bug bite is right where the spot on the scan was. The redness matches the margins. We'll check it again on her next scan to be careful, but he isn't worried. I wish I could say the same. I ask him if scans can be THAT sensitive? He says yes, and sometimes thats the problem. But try not to worry.  He is a dad so he knows that's easier said than done. We sign up for the Halloween party and say our goodbyes.  I text Phil to let him know the good news. I try to enjoy the good news and not start to worry about the next round.