Half way.

A couple of long days, but not too stressful. I am super grateful for the new peds radiologist. He's been really great about working with me, listening to my concerns and the radiation techs- who have known us for years, have been wonderful.

Lily's day started out fasting- since they try to get good images of her belly and that's where the adrenal tumor would likely grow back- it's better to not have a lot of extras in there. We all know how much Lily loves food(what's not to love?) it is a minor challenge. We all tend to get Hangry - so we sat down and went through old baby pictures to distract her. Of course as we sit there, she's sniffling, coughing and says her throat hurts. So just like her mama- she gets sick for scans. Which other than worrying about the breathing and coughing- what do you want to do when you feel sick- lay around and sleep. Not in a cold, hard, loud, tube- but we take what we can get. As we looked through pictures, I found the one that always sticks out in my mind. This is one of those pictures that always makes me think- wow, was that big old adrenal tumor already there?

But we can't wallow or participate in shoulda coulda wouldas. We learn and go forward. Which is why we scan. There is a lot of anxiety surrounding scans and one of the reasons many clinics won't do it- they feel it causes more stress than benefit. I think it is an individual thing- like anything. This is one of those times genetic counselors and a good support staff is instrumental- they help people decide what is right for them in this area. Some find the scans too stressful and  pay attention to symptoms and have things immediately checked out. Since we have been doing this cancer drill awhile- and over many generations- there is some merit to both. Ideally the routine that works with the person's needs and coverage- is ideal. I didn't scan for a lot of years. It was too stressful, but over time I have seen first hand how catching tumors early has definitely advantages in survival. There are still so many unknowns, but I want the best chance for my kids. There will be tumors due to type and location that really not much can be done without damaging quality of life. Those decisions suck. I have one of those decisions in my head. You make those calls at the time you have to with the information you have. 

We get to MRI around 10:30. We fill out the papers since they last a year and it's been a year. I don't think I've never not filled out the papers- but its one of those things- it's almost automatic. I read the questions out loud so the kids can answer. The are you currently pregnant question usually gets fun responses. 

The tech hands Lily her scrubs and takes the movie Lily brought to watch in the groovy MRI goggles. She changes and we go over the plan. There's a lot to scan. She has a dedicated brain and abdomen as well as the full body for LFS screening. They try to minimize the time as much as possible but really want good images- so we know it's gonna be a long day. She said in between each set she will give Lily the opportunity to get up and walk around. I know this adds on to the overall time, there are coils and gear that has to be taken off and reset each time she moves- but I appreciate them taking good care of her. 

off to the races. 

The goggles before they put them on- with headphones, under the head "cage"

Overall, Lily is in the scanner about 4 hours. The peds radiologist comes and talks to me after the first round, it all looks good so far and then each subsequent round. We talk a bit about LFS and things I've noticed with Lily and through others' experiences just to help him understand my concerns. He has a 10 year old and it shows, he is great with Lily and great with me. I appreciate the extra time and care. Most MRI facilities are really busy, Tripler is exceptionally so(lots of active people and dependents) and they are down 1 machine. They brought in a portable out in the parking lot- so patients periodically come in, change and head out back. It reminds me of my very first MRI when I was 15- in the parking lot of the hospital. 

Lily comes out a few times- they had to run a couple sequences over- which in MRI world means starting over. The cold is definitely a factor and I feel bad for her- but she is doing well. We walk up and down the hall and I rub her back. Then she gets a bit of a reprieve- the system has to reboot and so she plays on her iPad for a bit. As she goes back in, the doc comes and we talk about her arm. We've been watching a spot for years in her humerus. We kinda forget about it in between scans and then it's like ripping a scab off- oh I forgot about that. This is one of the gray areas. You find things that could be normal weirdisms you'd never know about- or it could be the beginning of something. In LFS we tend to err on the side of it could be something and out is better than in. But that works well for superficial lumps and bumps- once you get deeper- you have to start weighing benefits and risks of digging around. He would like an Xray to check. I used to freak out about X-rays- but I know that it will give him different information than the MRI and it is better to see bones with.  I ask- if it doesn't really show anything are we going to come back and look more with MRI and should we do a more dedicated MRI since it has grown a couple millimeters and she is in there and we still need to look at her arms? And this might be the point he starts wondering what he got himself into with us. So I explain- we grow weird. That certain cancers seem to pop up at certain ages in LFS. On a normal person I would be ok saying"it's a cyst" and maybe monitoring it- but in an LFS kiddo with a history of 2 cancers already- I would be more comfortable with more information especially if we need to decide to biopsy or remove it. I explain how the sarcoma in her leg and my arm really never concerned the docs and it was at my insistence they were removed. It happens a lot in our group of mutants. And with hormone changes and this age- I need to know more. I want her oncologist to have more information. He orders the dedicated MRI. The tech tells me she saw the Mallory's were on the schedule and took leave for the rest of the week. I joke she should know- Lily's not the easy one- she shoulda taken Bella or Kiera. 

Lily is done just in time for her hearing aid appointment. Which luckily is just down the hall. We enjoy a little Chopped while we wait for the audiologist. She's getting her new streamer so she can pair her hearing aids to blue tooth and use them as headphones. It's actually pretty cool and she is stoked. 

rocking out to Katy Perry. Roar.

We head back to radiology so we can look at the images with the doc and squeak into the Xray. It's now after 5 so the hospital is quiet. I like this time in the hospital. And I know traffic is a bear- so no rush to sit in it. I feed Lily a pop-tart from the vending machine because I know she's starving. The spot in her arm is bigger than I like. Definitely want to discuss this with her onc. She is fascinated by her insides. Her left adrenal looks good, a couple other areas I was concerned about look good. I feel positive overall. We head over to Xray. 

The tech wants to know which part hurts. I tell him they saw a spot on MRi and we are cancer screening. His bedside manner instantly is more genial. We finally are done for the day. I read half a book, my head isn't splitting, I've managed stress and lily did exceptional. I thank her for doing this and she gets to pick dinner. 

Chili's- Root Beer and games

We get home and pretty much crash. I had been patting myself on the back for how well I handled it-and that I was feeling pretty decent and then the exhaustion hit. I woke up Thursday feeling pretty awful. The debate- do I go back to bed or get on with the day? I went for a walk and called Monica for a mini mom melt down. I wish she was next door still- but telephone works. She reassures me that I'm allowed to be exhausted and tired and it will be fine. Sometimes you just need to hear it. I take it easy as possible until afternoon activities. We take Phillip to work out, Kiera to voice lessons, a quick stop at Walmart for necessities and a movie for Bella in the scanner- she's a huge Divergent fan and the Allegiant was out on DVD. We pick Phillip up- drop him and Kiera off- they will take Lily over to Aunt Theresa's for dinner and Bella and I are off to Tripler. 

1st non sedated solo MRI- rocked it!

Bella is milking the hunger thing- and suffers from my nervous bladder. I think we stop at every bathroom. We fill out her forms, change her into scrubs and she and Ducky are ready to go. Ducky gets a quick check in the metal detector and is approved to ride along for the MRI. 

Bella and Ducky- a special stuffed comfort made by her friend Sophia. 

I like the quiet of evening MRIs. Except for the construction and the noxious chemical smells that are coming from down the hall. Fortunately they only work until 6 and it fades when they close the door. The tech pokes her head out and says Bella is doing amazing. She even passed up the first break.

Bella and Ducky

 She comes out a couple times after that and we walk down the hall and get a drink. She is so much more relaxed. I'm glad it wasn't as bad as she feared. She wants to see outside, which I find fascinating. We walk down the hall and I warn her it's dark out- so we can't see much. Overall she was pretty quick- less than 2 hours in the scanner. She is the shortest one- so that helps. Phillip is gonna take AWHILE. She picks Taco Bell for Dinner so we make a run for the Border. We chase that with a McDonald's ice cream cone. I thank her for going through it. I know it's not normal, easy or fun and I appreciate it. I'm impressed- I knew she could do it- I'm glad she did so well. 

Proud of this Kid!

Tonight is Phillip and tomorrow morning Kiera. Phil has Phillip duty- which after an overnight alert shift last night means he'll probably get a good nap in the waiting room. 

I don't expect to hear about the kids results right away- hoping maybe to catch up with the radiologist on Saturday. I'll give him time to make the formal reports and call the oncologist next week. Thank you for keeping us in your thoughts, I definitely appreciate it.

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!

Fortunate Fortunes

Years ago, eating at Panda Express after a scan or a tough clinic visit became a routine for Miss Lily and the rest of the mini mutant monkeys. When Panda opened down the road- there was much celebration of fortune. We dreamed dreams of fluffy orange chicken clouds and floated along rivers of noodles. We have become fortune cookie officianados. There are rules over who gets what cookie and no one ever wants the broken one. I've started taking mercy on the broken ones- they didn't mean to get broken and it doesn't change their fortune. The fortune is actually easier to get to and I'm old enough to know I've cracked open quite a few cookies.  Sometimes the fortunes are simple statement of fact- your opportunities are many or you will soon go on a long journey.

You are guided by silent love and friendship around you.

Fortunes like life are what you make them into. Take any statement and you can turn it into a mantra, a curse or a dream based on what power you give to it. As long as you realize the true fortune is in the moment and inside you. The rest is just dessert.

This was one I got after my first chemo.  Ah the ironic fortune is one of my favorite kinds. Yet fortune, like friendship has a way of being there when you need it. Telling you the truths you may not believe. Or giving you a bit of hope to reach for. Or for the times you just need a laugh.

This was Phil's fortune on his very first field trip as chaperone for Lily's class adventure to Chinatown for Chinese New Year. The contemplative fortune. Phil texts this to me and I spent a half an hour wondering what problem he chose to signify and if he could find understanding. Can we ever truly understand the great problems that mar our path? Later I brought up the fortune wondering if he was ready to talk about cancer and life and the uncertain future. I asked if he found understanding. He said no- the problem was the waitress didn't listen as they were boxing up leftovers so he ended up with a lifetime supply of fried rice and not nearly enough broccoli beef. Sometimes you can't stop to contemplate. Sometimes you just have to keep on keeping on.

The next night I am trying to find balance. Phil was at a funeral for a former boss who passed suddenly. Phillip has wrestling, Bella has soccer and Kiera has science fair awards and all overlap. I leave Phillip to his own devices, pawn Lily and Bella off on my sister in law and take Kiera to her awards. On the way we stop for a quick bite. I ate little, unsure of how my iron constitution might powerfully and physically betray me. I grab a fortune cookie, hoping to find some lighthearted introspection and this is what I read....

I laugh and show Kiera. I wonder if I am going to have to perform the heimlich she laughs so hard. I think you got the wrong one she says. I think so too for a minute. Then I remember how fortunate I am. Length is not always measured in minutes, it can be measured in feet or miles. Perhaps length is relative. Perhaps it's not the size of the fortune but how you use it. Perhaps the fact is we just don't know. Whether this fortune is statement of fact, ironic, or contemplative - we will just have to wait and see.  Hopefully it will be a long wait.

Team Mallory

Right after I started treatment, my good friend Gina- from her remote location- sent me an email asking if she could help create a T-shirt as a fundraiser for our family. I've known Gina for a lot of years and she is a kind, thoughtful person. Of course my gut reaction was- OH Dear God No. But I decided to heed my mutant friends' advice to allow people to help me and took a moment to think on it. I like Tshirts. I wear Tshirts. Phil likes Tshirts. He wears tshirts. The kids are constantly growing out of their Tshirts. We have Tshirts from squadrons, from trips, from sports and now theatre. So why not? 

I talk to Phil about it, knowing full well his reaction is going to be- OH Dear God NO. I was not prepared for the veil of despair that came over his face. I expected the adamant proud reaction- we are fine. I jumped on the defensive and explained we needed to let people who love us help and the majority of our family and friends are over the ocean and cannot prepare a meal or run the kids to school and want to help. At least that's what people keep telling me. He simply said- It's not the T-shirt. I don't want to be the family that has a Tshirt because I don't want it to be that bad. I'm not ready for it to be that bad. 

I understand the panic. The tough realization. I hate that I ultimately am the cause of pain for him. That there is not much we can do to change the course we are on. A course of limited time.  When my brother Bob got sick there was no time. No time to Make a Wish much less have it granted. Barely enough time to say goodbye. Some of the toughest parts are the unknowns. But I remind myself, no one knows. We were told maybe 5 years with Lily. You just don't know. We have some key information that changes the way we play. Perhaps it's time to let our friends play along side us. So I sit down and try to think of what I would want on a Tshirt? That wasn't swearing associated with genetics....

When we joined the Air Force fighter community years and years ago, I made many friends- some by chance, some by design.  It's a family in so many ways. Orders throw you together- but choice keeps you together over time.  A friend, who both she and her husband outranked mine by several years taught me that friendship and respect know no rank. Long before Edward or Jacob became the gold standard of teaming up-she referred to every family as a Team. She was kind to everyone and taught us most success comes from working as a team. I embraced this approach and welcomed every letter and every card that greeted us over the years with her signature address- 

TEAM MALLORY. 

A few years after moving to Hawaii, I faced the challenge most stay at home moms face- what is my purpose? Is this enough? Meanwhile my mom felt further away from each milestone for the kids and I tried to find a way to bridge that gap with a new technology- blogging.  The kids were monkeys in every way- and it became Monkeying Around. As life and technology seem to do- all this changed and grew when Lily was diagnosed with 2 cancers- one of which had and extremely poor prognosis. Entries were no longer happenstance potty training forays- they were a lifeline- a way of healing and sharing the heartbreak and survival through a really dark and scary time. The title reflected our military connection and the focus of the time- Lily Kayda and the Tale of the Terrorizing Tumors. Publicly blogging forced me to find a bright side to every story because I firmly believe that the way you approach a problem and attitude affects the outcome. It also became a tool for me to help others understand more about us and living with cancer as those who live with hereditary cancer syndromes like Li Fraumeni Syndrome have to do.

I never thought cancer would skip me. It is a lifestyle of careful watching. Knowing my body and trying to teach the kids without being oppressive to do the same for themselves is always in the back of my mind while preserving a sense of normal. Although there is always a certain element of shock with cancer diagnosis- when you have a family cancer syndrome like LFS- you kinda are waiting for it. After watching my dad and brother be stripped of their personalities quickly with brain tumors- breast cancer was a relief for me. At least it was a part that could be removed. I knew it was still a threat. But the summer after my surgeries was the perfect answer- visiting family and spending time with my kids on the road- like my family used to do growing up.  One of my favorite mementos from the trip was a necklace I made in Colorado while Kiera tried to decide on which beads she wanted. It was a simple endless knot with a few beads. Some call it a celtic knot. It winds round itself like protein structure or DNA. Some call it a Buddhist knot. Also appropriate since most only know my better half as Buddha. Either way I love the symbolism of it. No beginning, No end. 

with my buddha, my monkeys and my necklace

SO I cut and pasted my ideas into a rough outline for Team Mallory- jet, monkeys, knot- and sent it off to Gina. She took care of contacting the company and after a few weeks they fired off some designs. When the design opened on my computer, my first thought was- OH DEAR GOD NO.  I shot it off to my cousin who said she liked it. It was a monkey driving a very inaccurate cartoon of a fighter jet pulling a banner. A monkey driving a jet? Pulling a banner? No. That is not going to fly. My cousin said no one expected mechanical accuracy on a T-shirt. I've long given up on accuracy but I just felt like it missed the target.   We were fast approaching Christmas, there was too much going on and I was spread too thin so I told Gina I would have my cousin come up with something and filed it away under a dusty mat in my brain. I was a failure at letting people help and I tried not to think about it again. Until Gina forwarded me some ideas her friend Hope, a graphic designer put together. They were beautiful. The knot was the same as my necklace and the center of Team Mallory. Four monkeys and their shenanigans. The jet, symbolic of not only a career, but a family of support. She captured us. And without these amazing ladies- the concept would still be buried under that dusty mat in my brain. I finally confided in Gina that my worst fear is that they would go to all the trouble of doing this and no one would want a shirt. Sometimes it's just easier not to ask for help than to ask and get rejected. 

TEAM MALLORY T-SHIRTS

So Imagine my shock to see within the first few hours, dozens of shirts selling.  The support is overwhelming, unexpected and so appreciated. As a friend said- it is exactly what you would do it for any of us- we just want to help. I knew letting others help me would be difficult- but I had no idea it could be so wonderful. Thank you to Gina for not giving up when I was difficult. Thank you to Hope for capturing a vision. Thank you to those who keep up with us and are brave enough to publicly announce any association to us. Thank you to all of our friends for the support and love. Team Mallory is bigger than I ever expected. Thank you for Hanging Strong with us. 

Shirt Orders can be placed until February 15, 2014.  CLICK HERE to Join TEAM MALLORY