So far so good

It was 4 am. There were sheets of warm droplets coating the homestead. The man of the house prepared for a major check ride at work and I laid there quietly praying these drops would be a good omen for the day. Rain means traffic. Traffic means delay. Delay means stress. But it also means rainbows.

In a wicked turn of events- I called the afternoon before to confirm Lily's Tuesday scans. I didn't sleep the night before- scans do that to me- and they aren't even mine. I knew the next week was going to be long, the scanxiety bad. The nurse in the sedation center asks if we could come in that afternoon for a physical- then they could squeeze us in Wednesday. My gut reaction screams- do it. Well- I tell him- I already scheduled the physical at our clinic this afternoon. Great! He says- then we can do the scan on Wednesday! Well, um- my son has an appointment- there's no way my husband can get off work to help transport the cretins- I just didn't know if I could make it happen- was there a rush? Well no, he says- but Wednesday is wide open- she'd be the only kid up there. Ahh. That's not a bad turn of events- flexibility. I made some calls. My neighbor agrees to take the kids to school( Lily would have to be there by 7am) and pick up Phillip and bring him to Tripler for his 1pm appointment. I call endocrinology- because I am thinking half sedated- starving Lily at a 2.5 hour appointment - probably not a good idea. I ask- knowing there's no chance- if there are any openings before noon- say somewhere in the 9-11 window(precisely when Lily's in her scan).  I explain the reasoning- she checks and says they will make it work. SO that's when the waterworks start. I hate asking for help and when people are so accomodating- it really gets me. I don't know what that says about the system(that everything is difficult) or me(I've learned that everything about the system is difficult) but I seriously am grateful when everything doesn't have to be SOOO painful for everyone. SO I call my neighbor back to let her know- she is off the hook for Phillip's transportation- I will just take him with me. He will miss the whole day of school- but this will save us like 3 hours travel time and parking nightmares in the long run. 

We get to the hospital and go to admissions. We are nearly late due to the rain phenomenon and traffic. Admissions- after long chats and much searching- finally realizes that the policy changed(this is the 3rd time- so roughly ever other year they change this) and that Peds Sedation does their own checking in again. Great.  We get her checked in and nuclear medicine is running behind. Meaning- they got stuck in traffic too. I keep Lily entertained- One of our favorite child life specialists stops by with 2 new Disney Barbie friends- Genie and Ursula- both huge hits with Lily monkey. I try to reach endocrinology- because I am going to get put on a list I really don't want to be on if I don't show up to this appointment. I leave messages. Ugh. I give the teenager money to run and get food- he actually brings said food back up to the sedation center- you seriously can't be eating that in front of your sister- she's NPO. Oh- sorry. Go to the family waiting room. Ok. The nurse offers to show him- Phillip says he knows where it is- the nurse shows him anyways. The kid just managed to go from floor 1 oceanside to floor 6 mountainside on his own- he may be dense but I think he can go out the hall and to the left and find a seat in the waiting room. 

It's finally time to sedate Lily. I remind them that she's a tough stick- they know the game plan is to dart her first. Phillip peers into the treatment room as she gets wonky she looks right through him- calling his name. He laughs. She finally dozes off- she looks dead-he says. No that's not what dead looks like- I tell him- that's what passed out looks like. They wheel her out and she desats a few times- it's gonna be one of those days- they might have to put a tube in- oh well- better than the alternative. We head down to endocrinology armed with more apologies. It all worked out. I have Phillip present his findings after he studied his 14 pages of blood glucose and insulin values and the doc is impressed. Mind you, the appointment isn't any quicker- they are just long, thorough, tedious appointments- but it is fairly painless. By the time we get back upstairs- lily is awake and her head is bobbing around like a buoy.  She begins her- I want to go home- I want to go home- chant. I'll take it over the I want to go home screaming.  She starts to perk up- she keeps saying she doesn't want to drink. Phillip buys her a bottle of water. I have a huge headache- I take a giant gulp and encourage her to take a sip. She takes a sip. The anesthesiologist checks on her and asks if she's peed and is drinking. The tech- who saw Lily drink but not me nods. They examine the water bottle- Phillip looks at me with that smirk- he knows better- he knows what needs to be done to get us out of here and fortunately , Lily is still out of it so she doesn't say anything. Lily- who when asked when she had her last clears that morning says- 6:07. and I say 6. The tech laughed and says 6 it is. No, it was 6:07 says Lily. Oh well, no matter when the procedure was delayed an hour, so all was well.

We manage to squeak out of there- beat traffic and get back to school in time to pick up Kiera from Cheerleading.  The phone starts ringing- the eerie sci-fi ringtone- it's the hospital. I can't bring myself to pick it up. The rain passed- it's beautiful and sunny- but no rainbow. The phone chimes- there is a voicemail. I take a deep breath- here goes nothing- it's her oncologist- everything looks fine- nothing of concern- so now we watch her hormone levels- she'll talk with her endocrinologist and we'll go from there. Now droplets are falling again- but it's ok - it's sunny out and I got my rainbow. 

Scanxiety

I have purposely been avoiding scheduling Lily's PET scan. I admit it. It's no secret. It hasn't been for lack of trying- I tried a month ago to make the necessary calls and have not heard back- so I carry on.  It's birthday season and I selfishly wanted to celebrate my girls' birthdays with them, without the looming doom of a scan hanging over our heads. Last year I went ahead with the flipping scans- and well- see where that got us. 3 surgeries- lots of headaches and appointments and yet somehow bought me another year. Yes it has been a year. Had I chosen to do chemo- this past year would have gone a lot differently. I am fairly happy with the way it went. After all- it was on my terms and relatively normal. SO to wrap up the year in the spectacular normal fashion- the plan was to celebrate 3 girls' birthdays in one month's time in addition to a week long TDY of the husband, multiple concerts, events, activities, etc. So as I approached the final stretch last week- squeezing in a mandatory last minute parent meeting for the 8th grader's Rites of Passage ceremony- when the phone keeps vibrating- I see Tripler is calling. I figure- NOW they want to schedule the PET scan- well they will just have to wait- I am finishing birthday season. After 7- I get home and check my messages- it's from our endocrinologist- I completely missed out 3 hour appointment for Lily and Phillip that day and she is worried something is wrong- she will call back tomorrow. I can't believe it completely fell off my radar. I know I should have picked up on it when I refilled Phillip's insulin last week and it was the last refill. I feel horrible and yet somehow relieved because I hadn't had 2 spare seconds this week- so had I remembered the appointment- I don't have any idea how I would have fit it in- trying to fit it in would have caused tons more stress- and so hopefully first thing in the morning- I could call and apologize profusely and reschedule.  But the next morning was Kiera's track meet and it wasn't the most appropriate environment to call, so I waited. Kiera asked if I would sit with her and I did. Having a 13 year old really makes you appreciate when the 12 year old wants to be near you- I know these moments are fleeting and the days are numbered- so apologies would wait.

After the meet- we make a quick trip to walmart- possibly the 8th such trip in so many days- taking care of goodie bags and party items and presents.  Tripler and Walmart usually fill me with the same sense of foreboding and ironically neither one gets beans in the way of cell signal- yet somehow I am in the center of walmart and my phone rings and it is Tripler. Ugh- so I answer , it's our endocrinologist and I make my apologies- she doesn't seem too angry, just worried. She really needs to see Phillip- can we squeeze him in next week and try to get Lily in after her PET scan. When is her PET scan by the way?  I recount my inability to get a hold of a human and a call to one of my insiders revealed the order wasn't in the system- she says she will take care of it. SO there that is again looming. It also adds a few hours of collecting Phillip's blood sugar numbers and downloading pump data and that kind of fun to the weekend. It is a small price to pay to keep him healthy.

The weekend passes in a blur and like that, Birthday Season reaches it's conclusion. I am relieved and exhausted. Monday is to be the day of cleaning and catching up on housework- but a last minute email from school shows a need for parent help in Lily's grade. Plans change- I spend 2 hours helping 2nd graders- in the pouring rain- scrub and gut gourds that will become ipus for their May Day celebration. My hand begins to swell- whether due to rain or overuse- who knows- one of the minor side effects of having a few lymphnodes removed but I know I have to take a break before it gets worse. This upsets me- I know I have to take care of my body and listen to it's limitations- but I don't like being limited. SO I head home and crunch the diabetic's numbers. He's doing pretty well- he's at least taking his blood sugars more regularly. We still have some highs and some lows and tighter control can be achieved- I can now predict how our doctors visits will go. I print out the 14 pages of blood glucose numbers and insulin doses and highlight the highs, lows and any areas of concern.  When the boy gets home- I will go over the numbers with him and we will discuss areas that we can do better.  It's time to get the girls. It was a day "off " for Phil- which meant he worked from 8-2.  I get a message from him and a text. Hmm either he's going to be late(likely) or something is up(likelier). It turns out he got a message to schedule Lily's PET scan. I get off the phone and call to schedule while I am waiting for Bella to get out of Hula. Kiera and Lily jump in the car. I look at the clock- 3:30- only a half hour to make the call- probably not a good idea to wait til tomorrow. They have an opening on Wednesday. THIS Wednesday? They had a cancellation and can squeeze us in. The catch- I'd have to get Lily a physical by 8 am on Wednesday. I laugh- it's 3:35 on Monday- I won't even be able to get a hold of a human probably by 8 am on Wednesday not to mention having to reschedule Phillip's appointment or taking him to Lily's scan and dragging sedated Lily to his appointment- uncle- what's the next available? Next Tuesday. Ok- let's do that.  I call to make the physical- it's now 3:55- I don't expect to get a human 5 minutes before clinic closes- but I do. She can squeeze Lily in tomorrow at 3:40. Ironically we would have been able to do the Wednesday slot- but back to aforementioned scheduling conflicts. It is tempting to try and knock 2 birds out with one trip. Especially since I know the next week will be filled with scanxiety- the moments of panic as the fear of potential catastrophe might be revealed. But I choose to spread the stressful wealth over multiple days.  

When I get home- Phil is there working on his May schedule bids for days off. I am just happy he has the potential for days off again and a little schedule flexibility. May is a busy month of kids activities. I tell him the scan plan and he gives me that look. You know I am off the island that day? I look at the calendar- the 30th is empty- if it's not on the calendar- it doesn't exist. I write in 10am PET. I shrug. We both know we have a horrible track record with scans, injuries, etc when he is gone. The doom cloud settles over my head.  It is what it is.  Do you want me to stay? I am trapped between reality and superstition. Common sense says his presence will not change the outcome of the scans- but superstition overrules that with experiential data. I can handle it- the only other option is Wednesday- which he has a check ride on so technically he is off the island then too- or putting it off until June. It's time- this journey started in November with strange stomachaches. It's now been months since the MRIs. As I tell everyone else when facing scanxiety- it could reveal something bad- by not scanning- it doesn't make the bad go away. It could also reveal nothing and then you have a couple of months until you have to deal with scanxiety again. So fingers and toes, knees and elbows crossed that insomnia and scanxiety are the worst things we face in the next week.

Springing into Action

I love love love Spring.  It gets a little overwhelming at times with all the birthdays and Easter.   My birthday marks the time of year I remind myself to get my annual checkups. No wonder I dread my birthday- yeesh. I don't dread it because I am a year older- I have long cherished every year I get to celebrate. This year marks the first year I have visible gray hairs. Every so often Phil and I compare- he's winning by the way!  It just compels him to be more dilligent on shaving his head- me- I pluck the rogue ones that draw attention to themselves- but mostly I'm not bothered-yet. To me this is a right of passage that so many in my family- so many with Li Fraumeni Syndrome are robbed of. I am not in a hurry to cover them. Like the wrinkles that crinkle at my eyes and catch my tears from time to time- I have earned each and every one of those wirey sparkly bits of tinsel. And just as with decorating the Christmas tree- too much tinsel is a bad thing- and when that time comes I will proudly cover my badges of courage just as I have learned to cover the emotional and physical scars of this journey.

It was a year ago that I made an appointment to have a lump on my arm checked out. A little hard lump that I noticed one day while driving. It became a compulsion- every time I got in the car- I would feel it. Never bigger, it moved slightly when prodded. But my gut said- it has to go, get it out.  It made the other lump- the one that would come and go with the monthly moons seem a little more ominous. Common sense tells you to deal with it- ignoring it will not make it go away. Yet in your heart- you have to be ready to face the battle ahead and each time you go to battle- a little piece of you is chipped away- sometimes emotionally- sometimes physically - either way- it's a little tougher each time. It doesn't get easier because you have done it before. It's not like riding a bike or something you can practice at and get good at. There are no Olympic medals for fighting cancer- although if you know of any celebrities who have gotten cancer- you know all cancer warriors are not equal and there are very different battlefields.  Such is the battle of life.

We had a birthday party on Saturday. A last minute invitation from an old friend. The lateness completely unintentional and a testimony to our hectic schedules- as it was a beautiful hand delivered message in a bottle invitation for a mermaid themed beach party. How could I say no to that- despite Saturday being Phil's only day off- the only chance to paint eggs as a family and have Easter dinner- since he was working Easter night?  So I slightly adjust the day's plans to include a couple hours at the party- managing beforehand to paint Kiera's nails which I had been promising to do for a week with cute Easter patterns and in 24 hours the theme would be late. We arrive late to the party- and just in time for me to escort 5 giddy girls down to the water.  I nod to the other party moms and am somewhat grateful to not have to engage in chit chat- it's not something I'm good at. I notice the birthday girl's mom pulls me over to introduce me to another mom who is sitting by herself at a table. I smile- but the girls are making a beeline for the waves- I excuse myself. The girls are soon cold and hungry and we make our way back to the party.  I get my girls plates, grab a quick bite and start the potty trips- oh the life of a mom!  Before I know it- Lily is laying on the picnic table claiming to be dying of stomach pains. Bathroom trip #85. Including me and a bathroom maintenance guy having a pretty descriptive discourse as to the nature of mess he would be finding if we were not expressly allowed admittance to the lavatory. He politely explained it would be 5 minutes. Lily screaming that she had to poop helped.

Upon returning to the party- party mom had noted  the rather volatile nature of my middle daughter's temperament and proceeded with the cupcake ceremony- always an event that can soothe the most grumpy of beast. It was time for us to leave- I told our host when we arrived that our departure would be premature and explained why- there was a pricey non cured vegetarian fed ham awaiting my attention.  She pulls me aside and drops the bomb-  I know you have to leave- but the mom I introduced you to earlier- um well - I think you have a lot in common and would you mind talking to her for a few minutes? I hesitate. A few minutes won't hurt- I can get the ham on the table by 7- it's not a school night. She continues- her older daughter has leukemia and I think you could really help her. It's like one of those movie moment realizations- I look over and wonder how I missed it- a woman sitting alone- closest to where her younger child is playing with the other girls- what could be construed as shyness or helicopter parenting is just plain old sheer exhaustion. In that moment I feel horrible that I missed it- that I have put up my barriers to others struggles because I have been so focused on our own. Part of me wants to run away. Part of me knows the universe throws these landmines in our path for a reason. Sometimes you have to pull the scab off. So I pulled. In the few first moments I could not even get words out- I became that person- the person that came up to me time and time again after Lily was diagnosed with tears and I ended up comforting them. A dad standing nearby made a beeline for the barbecue.   Yet you are never as strong as you are when you are helping your child battle for their life and I know this now. I also pulled myself together and explained- choking up- I heard her daughter had leukemia- she nodded preparing herself to hear what everyone else says- they are so sorry- is there anything I can do- but instead I pointed to Lily. She's my survivor. She didn't have leukemia- but she had and exceptionally rare cancer with a very poor prognosis. This is the hardest time in your life- you will never be as exhausted or as strong as you are now and you will get through this. You will find strength in places your never expected and people will surprise the hell out of you. Ask for help. Sleep when you can and don't worry about the little things- when you get through this- they will be there and you can deal with it then. By the time I stopped talking - I realized we were gripping each others hands-me unsure of who was helping who more.  We talked for over an hour. We laughed about things that would mortify those who had not been through the journey. And so the scab bled- and still bleeds. But sometimes you are given an opportunity that reminds you of your purpose. I had been feeling very low about where I am at- where I am going. Even Phil finds relatablity on Sportscenter- Stewart Scott said "The worst part about cancer is that it robs you of the ability to make plans".  And we laughed. You can make plans- and just watch the show as they implode- sometimes it goes down like a tube of mentos in diet coke. Ahhh plans.

When you are living cancer- you have support coming out of the woodwork. You are on autopilot- "you don't have time to think up there- you think- you die". And you spend the recovery years trying to pick up the pieces- putting them together- but the moving forward is tricky.  You are terrified to make plans that will get annihilated by cancer yet you are surrounded by the urgency to get as much accomplished as humanly possible before time on the clock runs out. All the while the clock it taunting you- reminding you that you haven't accomplished things while daring you to make plans so you can face the ultimate disappointment. And so through it- you pretend to be normal and you get immersed in normal things and you pretend to forget about the parts of your life that have left the biggest scars. And under that scab was a great big scar- but spring is a time for new beginnings. And that scar was once an open wound and it healed- and now it's time to keep on keeping on and if we are lucky we will be able to look back on these times and have lots more scars to compare- because although those aren't the only remnants of the battle- they are the ones that bring us together and remind us what we are fighting for.

Our Friend NED, we want him to stay for a long visit.

I finally tracked down Lily's MRI results. NED is our friend. We love NED. NED is No Evidence of Disease. Another new favorite phrase is "nothing concerning".  Lily's brain looks normal. YAY!  This is a big sigh. Despite several professional opinions- that adrenal cancers don't usually metastacize to the brain- whenever I hear "don't usually" I file it away for a rainy day diagnosis- since "don't usually" usually translates into something that might cross our path. The other big issue is my family history of brain tumors. With Li Fraumeni Syndrome- once you have cancer- the chances of getting a new, rare, unrelated cancer increases- unless of course that cancer is a brain tumor and well the outcome isn't so hot. Since Lily is so young- we are watchful. It's a tricky game. We now move on to the trickiest of parts- weighing the benefits of finding what, IF something is brewing using scans that could potentially CAUSE more damage in the long term with waiting and seeing and possibly missing a chance to nip it in the bud. There are no right answers. Most days I want to pretend everything is normal and try to convince myself that things are fine, and then Lily has an episode and I am immediately transported to 4.5 years ago to a place with tantrums and strange sensory issues and the mommy sense, much more acute than spidey sense- is ringing so loud in my ears I can hardly think.

I feel so lucky to have people I can count on in Tripler. We have several angels that look out for us. I HATE calling in favors and asking people to do things for me- but it's so much easier to do for Lily.  I often rant on and on about our endocrinology visits- their length- their "thoroughness" and how most of the time it's too much and feels tedious. I have been asked why I put up with it. Well in times like these- that is EXACTLY the person I want in my corner fighting for Lily. We have multiple issues we are playing with- we have potential oncologic issues, but we also have some major endocrine issues and they are inextricably linked.  Specialized medicine can be really useful, especially with rare diseases such as Adrenal Insufficiency or Li Fraumeni Syndrome- diseases that professionals may or may not see during their career- it's a huge game of chance. But these are precisely times that there needs to be a continuity and more often than not, this continuity is me. It is also with regret that I inform you- my memory is not what it used to be. In the early morning hours, I convince myself it is old age as I am rapidly approaching 37- which is elderly for the LFS set. Other times I chalk it up to the beginnings of my own brain tumor and go on find my happy place. I felt a week was plenty to stew on MRI results. I sent emails, I made calls- not getting through, finally getting through to a nurse who had not seen Lily's results but assured me I would have gotten a call if there was something amiss. If you have ever been on the receiving end of a "nobody called you?" after a diagnosis- or been inadvertantly revealed a new piece of information in the medical arena- you KNOW that for every 2- no calls could be good calls- is the call that should have been made. When my next step hinges on test results- I'm invested in the timeliness of it.


I call in to our endocrinology nurse. She's been with us from the beginning- back in the day plying the chemo shadow of a Lily in a pull up and purple robe with as much candy as she could carry. At a time in our lives that I wished she would eat the darn candy as opposed to letting it coagulate in her robe pocket. The pharmacy couldn't refill a couple of meds, so this was my opportunity to call in a favor. I mention I hadn't heard Lily's MRI results yet and was told they weren't in. I would feel better if I knew what they were. She asks if I want her to put in a request for the doc to call me. No, I already emailed him- he knows I am waiting. I know he's busy- and probably with kiddos in much more dire need- but this part is taxing. I hear her typing. "Normal" she says."I'm sure everything looks normal, No Evidence of Disease. " I sigh. It helps to hear. Sometimes you just need to hear it. Now we move on to the next issue. I hope NED stays. If there is something to see, PET CT will see it. Now on to scheduling that hot mess.

Brainiac

After battling traffic and parking related to Tripler way too many times in the past month- I was relieved to have a night appointment. Since the MRI is way overscheduled- always, they've started night appointments. It's kinda like Night Court- but hospital style.  Of course you run the risk of getting bumped by emergency scans- but that happens during the day too.  Add the bonus of Lily not missing more school than necessary- this could be great. Yet as soon as she saw MRI on the calendar- she starts to panic. Is it going to be a long time? Am I going to need an IV? What are they going to see? What if they see a tumor?

None of these are questions one would expect from a 7 year old. But as we know- Lily has never been your average kid. My biggest worry was that they would be able to get good images through the fabuliciousness of hair on her noggin. Between the past 4 ultrasounds, MRI, CTs, etc- it has been difficult to get any of us in for hair maintenance. God Love Ponytail holders and headbands.

Ultimately, Lily's biggest worries are 1) that she will have to talk to the MRI tech and 2) they will see what she is thinking.  I love that this is how she views the world and partly wonder if her coping mechanism is just screaming nasty words at people in her head as she seems to be overly concerned with people knowing too much about what is going on up there. I explain that the techs will be nice and they have a job to do so when they give instructions- it's just to get the MRI done as fast as possible and that means holding really still- statue still? Yes- statue still. I ask her what the worst possible thing the tech could say to her is? I just don't want them to yell at me. They will absolutely NOT yell at you- they will tell you to hold still- but if you need something you have to tell them. How will they hear me? There's a microphone. Can they see me? Yep and you will have a bulb to squeeze. Ok. And they won't see the words in my head? No, they will only see your brain. (fingers crossed).

We go to check in and Miss Shy- looks at the tech and says- can I bring Pooh in with me? He looks at me- I just shrug- really it's your call- I'm pretty sure he doesn't have any metal- the poor old bear is hanging on by a thread.  He asks if he can take Pooh and make sure. Lily's eyes are wide- as he disappears with the bear- Pooh's gonna have an MRI? Pooh passes the test and Lily is all smiles. We have to wait while they get the machine ready  and she whispers to me pointing at a guy in the waiting area- that guys eyes are red. When Lily is nervous- she talks- a lot. And she says hugely inappropriate things- loudly- like- which one is your fake boob again- while reaching out to cop a feel. Yeah this is my life.  I tell her he's probably tired and not to stare. I look up to smile apologetically and the guys eyes are No KIDDING- Twilight caliber- creepalicious RED. I can't help but laugh. The freaks come out at night- and although you don't expect it as much in the Army hospital-really military folks are a cross section of society and have their own idiosyncrasies. He has a big black leather purse at his feet and falling out of it is a belt with studs on it- the big sharp, pokey kind.  In my mind are all kinds of images and scenarios of what brought him and his lovely lady vamp here, at 8 Oclock on a Tuesday. A few minutes later- she appears. Huge hickey and all. I try not to laugh and am grateful for the distraction.

Really everything else is irrelevant because I called ahead and asked if we could possibly use the goggles and at a minimum headphones with music. We brought a movie and she was good to go. The biggest glitch was that I told her they would put the IV in first- and they put the cream on first- so they would inject contrast in the middle of the scan- Lily doesn't do well with change- but we talked through it and decided that cream was better and she would be brave and watch the movie. I didn't want to offer to sit in the MRI suite with her- since Lily is all about precedents- I want to see if she can do this on her own and she is doing great and hasn't asked me to- I know she can, she's already absorbed in her movie. I retreat to the waiting room. The guests have rotated and there are 2 women who also talk loud when nervous- and obnoxiously about who they will and won't have sex with. SO glad Lily is in the loud room with headphones on and that I have mine in my bag- oh GOOOD-NESSS.  Lady 2 takes a picture of Lady 1 in her scrubs- lady is a stretch- and promptly sends it to her husband. Lady's 2's not Lady 1's husband . Weirdsies. I turn my music louder. Before I know it, it's been 45 minutes,  the door opens and out comes Lily- goggle imprints on her face and asking for a snack. That's my monkey. She shows me her "poke"- I didn't feel it at all!  Part of me wonders why we haven't done it this way all along. I'm sure it's because this started when she was 3 and most times her scans last 2 hours. BUT- with the right movie choice- we may be able to do this.

I expect to hear results from the brain scan tomorrow, maybe tonight if I'm lucky. Next up will be the PET-CT scan. This is the one that has the most risk and possibly the best payout of information. Kind of like all things in life.  The risk is the amount of radiation. First  of all she's young which means her cells are a lot more active which means they can get damaged pretty easily from radiation. Secondly she's got this pesky Li Fraumeni Syndrome- which includes what is called "radiation sensitivity". A friend and I were just joking about this sterile inocuous way of putting it. Our cells don't repair damage like they should- radiation causes damage- normal people's cells fix it- ours get overloaded and go rogue(cancer). This scan involves not only the radiation from the CT(which is around 300-500 chest Xrays worth) but a radioactive glucose is injected beforehand. The theory is that cancer loves sugar- it eats up the radioactive glucose(remembering that helps me avoid that extra brownie..)- whatever lights up on the scan is a potential malignancy. The down side is that kids are growing- so they have a lot of normal cells that are using a lot of sugar too, so you can get false positives. The up side is that the earlier you catch cancer- without seeing symptoms- the better chance at removal and survival. SO here we are- still hoping to see nothing- but not feeling any better about the nothingness. Needle in a haystack- unless you plan on sewing- do you really need to go looking? Ah the conundrums.

Making the lists

After a dozen or so scans- I finally got smart and didn't tell Lily about it until the last minute. I actually didn't tell her about it at all- she saw it on the calendar. Lily is a stress monkey. Whether it's a side effect of the steroids or just her personality- she tends toward the hyper stress mode. So the other day she spots MRI written on the calendar and immediately asks- WHO is having an MRI? Um- you are. Yeah, you kind of give up on Mother of the Year when you genetically predispose your children to the jackpot of cancer disorders. SO she shakes her head up and down, processing the news- Ok she says- what time is it at?  Well that should be obvious, but I write things in code- 9 clears 930 admit- she can have clears until 9- She is NPO but that starts in the middle of the night.  She looks at me- oh yeah she asked me a question- It's at 11, we have to get there around 9.  DO I have to be NPO until then? She couldn't tell you what 8x4 is- but she will explain what exactly NPO means. It's Nothing Phucking Orally. Ok she doesn't know that- she just knows it's not phun to not eat before scans. It's also not fun for me because I generally can't eat out of sympathetic guilt and by about noon- I'm a bundle of hungry nerves. Especially since last time- it took them 4 or 5 tries before they got her IV started. Numbing cream or no- that's not something a 7 year old can forget. I don't expect her to, so I lay down the law for the tech. He seems new- blanches a little and next thing I know- one of the other nurses is taking over. I didn't think I was mean- I told him he would get 1 shot to get her IV in and 1 dart- it was his choice if he wanted to dart her before or after that try- I recommended before.He refused to come near us after that. God I remember the days when I would let the newbies practice on me. Now I point to the vein. I don't let people practice on my kids. Period. So she gets the dart- it takes the edge off and a tech who I don't know but have seen around gets her IV in the first try. I make a mental note- he's on the good list. I see people all over Triple and many I can't remember where or how our paths crossed- but I do remember if it was positive or not. Sometimes when I am sitting around and waiting- I try really hard to place people- I swear some must have been in the room the day Lily was born- or in one of our many surgeries, but it's just a guessing game.


Lily was especially agitated after they put the IV in. Usually the dart calms her- but we have a different team- and one thing I've learned is that everyone has their own style and my memory sucks. No she doesn't like the gas- yes she does well on the dart- but don't ask me what specifically does into that magic little injection that makes everything all rosey. It obviously was not in it today. She cried. She panicked. It was a definite learning experience for the med student, resident and child life specialist in training and the momma who is trying to do all four jobs at once. The nurse assures everyone that it's normal. Lily normally gets emotional- right? Well before hand yes- but usually it's the waking up part that sucks- not this part. She kept chanting how she didn't feel normal, it didn't feel right. I know it's the meds and she won't remember this- but I will. Every last tear.  Her begging me to let her go to school- school is fun- this is not fun- I just want to go play- I just want to be normal-not this. Not this. I want daddy, daddy is supposed to be here. I Promise her that daddy will be here when she wakes up. Finally we are on the move and she continues sobbing in the hall and finally the anesthesiologist has mercy on us all and gives her some versed- the happy juice and she drifts away into happy land.

As they get her situated in the MRI- the nurse confirms how long the MRI will be to assure they have enough sedation on board. She says 30 min. I was under the impression it was going to be 2 hours. I am a little annoyed that I requested a Brain MRI and was told that this was the first step- we'd get to that when we needed to.  As a girl who comes from a long line of brain tumors- I don't make this request lightly. But I have to trust the docs. 

The waiting part sucks. I can't focus enough to actually read anything. I try to listen to music to drown the anxiety. I pace. I find a window down the hall that is radiating a little warmth. The sun is shining through clouds- bouncing off the pink stucco like a poorly timed sunset. Rainbows appear and dart behind clouds. I hear the metallic clink of the wheels of a gurney- it's Lily. She's snoring away.  We head back up to the sedation center to begin the wake up process. Phil manages to make it there from work before she wakes- lucky for all of us.  She wakes briefly declaring she has to pee. I am really glad Phil is there- it takes both of us to drag her 94 pounds of sack potatoes to the bathroom where she promptly proceeds to fall asleep on the toilet. I stick her hand in the sink and start the water- nothing. I shake her and tell her to go. She says she's thinking, she thinks better with her eyes closed. I guess it could be worse.

She finally is coming out of it and the oncologist comes in. The dread. Absolute freaking dread. He plays with her for a minute and I want to shake him and scream- just tell us. The abdomen and pelvis were clear. Seemingly good news- I feel bad that I am not relieved. I want to believe that things are not about to get worse. I want to believe. But...oh there it is. She had a pretty full bladder so we want to do an ultrasound to check that out.  I guess that makes sense. And then we will do a PET and a brain MRI. The order is not set in stone- we will deal with each and cancel or add as we find or don't find information out. I don't like this game. This game sucks.  Can we give this game to the hypochondriacal person?  So we are going to do another ultrasound, then possibly a brain MRI- without sedation- which I requested we do today while sedated and then PET or maybe PET if the ultrasound shows something and then maybe brain. So the list of tests starts. I know there is no quick one size fits all- but this seems neither efficient or direct. It seems like we are stabbing in the dark. This is the big crappy part. IF you catch cancer early- you can potentially "cure" it. Her bloodwork implies something is brewing. IF you wait and see- it might spread or be too big to get. I know I have to be patient. I know that I have to have faith. It's just really tough to go looking for something you don't want to find. Despite the fact that I did all the research 4.5 years ago- I want to believe that Lily will break the mold-defy the poor prognosis- obliterate the major risk of recurrence.  I try to have patience and remember we can get through anything if we stay positive and stick together. I hug her a little tighter, a little more often. I hug all of them tighter and more often. I think they are getting a little annoyed- so I guess I am doing it right.

Every 2-3 months Lily and Phillip go for their routine endocrinology check ups. They are long afternoons- usually 3 hours plus traffic in a small room discussing uncomfortable topics like puberty- bowel movements-poring over blood glucose numbers and carb intakes. There is a physical exam for each child and review of bloodwork. Since Phillip is 13- he belongs to the adolescent clinic and Lily belongs to the Pediatric part of the clinic. Yet endocrinology encompasses both. We schedule the appointments together to cut down on the commuting- but I have to check in the kids in the different clinics. I send Phillip to check himself in- and then after vitals- Lily and I walk over to that waiting room since there are far less rugrats, chaos and germs. Sure we might catch a stare or a glare from some angsty teen who wants to be there as much as we do- but it's better than strep or the flu.

I sent all of Phillip's blood glucose levels and insulin doses and general paperwork to his endocrinologist on Monday, hoping, vainly to cut down on the length of the visit. It didn't work out. You know in the first few minutes when you start discussing bloodwork and the word "concerning" comes up that you are stuck. It's not Phillip's bloodwork- although we have been struggling to keep his sugars in range- this is fairly normal for a teen. Lily's hormones are elevated. Not the "you need more or less medicine" kind of hormones- the adrenal tumor kind of hormones. I know I should feel lucky. When I researched this damn tumor- I knew the prognosis was poor. I know it comes back.  That doesn't mean I haven't spent the past 4.5 years hoping it wouldn't. So we have an MRI- which they don't expect to see too much on- because she just had a CT in November and it didn't show any signs of tumor.  But we know they come back- so we have to see if we can find it because her bloodwork says something is going on. SO as I am processing this and the knowledge that if the MRI doesn't show anything(which normally I hope and pray for) then she gets and automatic ticket to a PET scan which is like 500+ times the radiation of an xray- which for your average non mutant is a pretty little blip but for us- it's the potential to cause a lot more cellular damage- with the hopes that you irradiate your child for nothing- to get an all clear- which means wither more tests or rinse and repeat in a couple months. Best case scenario- you catch it early enough and it's resectable.

On top of that, Phillip has a lump that we are investigating.  He is old enough to not want the world in on his bizness- so I will respect that. That involved an urgent ultrasound tacked on to today's visit. Yet in radiology- no siblings- under any circumstances are allowed in the room and I have Lily. SO we are mandated to wait in the waiting room while the 13 year old is checked out. The radiologist  knows all my kids because we made history when 4 of them were being ultrasounded(yeah it's a word) at the same time. Phil and I bounced between rooms like jumping beans- zone coverage. It was amusing in the ironic- hope they don't find anything kind of way. Yet today- in an after hours urgent ultrasound- I get the flipping tech who doesn't know us and won't let us in. Mind you Lily was just ultrasounded 2.5 weeks ago- so she know whas up. Never mind- wouldn't be an issue if they would have ultrasounded the right part. Well they got the right part- they just missed the right part of the right part. So the radiologist tells me everything looks fine- sometimes it can happen- yada yada- I breathe a momentary sigh of relief. We walk out- I ask Phillip if he's he said- yeah but they spent a lot of time on the wrong part. I assumed they were comparing sides- no- they were on the wrong side of the right side. Oh dear the sigh of relief now feels like my energy being forcefully sucked from me. So our endo meets us- we deliver the news- she seems befuddled as well and says she'll check on the full report. 30 minutes later- I have yet to exit the Tripler parking lot(we call it the Tripler 500) where hundreds of cars exit ONE road. ONE ROAD. EVERY Flipping day - no wonder our endo works late- sitting there for an hour- on top of the hill- watching the traffic on the highway build while again processing the potential mortality of 2 of your kids is a little maddening.  They indeed did not examine with thoroughness the area of the lump and can we come back Friday so all docs can be present and put this to rest. Sure- I guess that's better than not putting it to rest- but in light of all the other crap we have to deal with- the urgency of this is feeling a little onminous- nothing things get tabled- or scheduled through schedulers which takes WEEKS! A friend recently was lamenting to me how difficult it was to schedule her daughter's MRI. What's that like? My new official title may be MRI/CT/Ultrasound waiting room attendant. BTW the toilet paper is low in the CT/Ultrasound waiting room powder room.

And so yes- we have also maintained our record of shit happening while Phil is TDY. I would have rathered the toilet explode- the car implode or a wall to fall down or something.  Unfortunately he knows me well and I can't lie to him so when he asks how the appointment went and I say I'd rather not discuss it until he's home- he asks- is it kinda bad or really bad? I say standard bad. Because this is our normal now and it sucks. The only alternative is depressing so we fight on. I will continue to hope that any one of these things turns out to be nothing-or at least something manageable. And I will hope my husband makes it home this weekend so we can face this next round of tests together- or at least he can hug me at the end of the day so something can feel right in this world. 


***UPDATE*** Phillip's lump is just a cyst. I immediately called my newest LFS friend in hilarity at inappropriate times to share the good news. In our world- as far as lumps and bumps go- you ignore a cyst and move on.  She also had good news that their most recent culture came back with no bacteria- but there seems to be a fungus. We truly have a pair of fun guys.... ba dum dum. Lily's scans have not been scheduled due to standard inefficiency but being familiar with the system and knowing a nurse or two around the block- we probably are looking at Thursday scans. Lots of non cancerous- non metastatic thoughts are welcome.

Support Groupie

As a young adult- I didn't understand the support group dynamic. I was a fairly introspective person and couldn't quite relate to how sometimes people just need people to understand. Despite losing my dad and brother at a young age- I still viewed life as something with endless possibilites and a rainbow at the end. I usually butted heads with my mother who at the time to me- seemed like a glass half empty kind of person. I had my own glass and was running around trying to fill it. It takes a lot of years and a lot of experience to realize that sometimes it is not possible to keep a full glass. Sometimes you get to a point where you realize that you don't even want a full glass- you just want to maintain what you have when the world around you seems to be dying to take what's left of your glass with them.  Sometimes one person's full is another person's half is another person's overflowing. Sometimes it depends on what's in your cup- who wants a full cup of crap anyhow?


Relationships change dramatically after cancer. I have no idea if it is due to the changes cancer requires or the inherent nature of relationships.  A friend of mine recently recommended the TV Show GO ON with Matthew Perry. I saw the previews but was hesitant to watch a show about a man who just lost his wife. My friend insisted she hadn't laughed that hard in a long time- so I gave it a gamble and spent the better part of a morning catching up on all the episodes. I laughed- sometimes until I cried and then I felt better. To me that is what friendships are about- helping someone with a few drops of sunshine along the way. Yet ironically- when you face with cancer- many people have no idea what to say- or they don't like the feelings your having a life threatening illness produces in them- so they stop talking with you. I remember once after my dad died talking with my mom about visiting with family and friends. She had pulled away from our biggest support group and I didn't understand why. She simply told me that sometimes it was too hard and too exhausting to be the one to always make the effort. People don't want to hear you aren't OK- so they stop asking and at some point- it's too much work to pretend you are OK- so you stop. And the calls become fewer and you find yourself making new friends. I thought that was craziness- until I had four kids- 2 with medical issues and then dealing with my own cancers on top of it.

My view of support groups has also changed. In this era of social networking- it has been said and is true- that although we are more connected than ever - our relationships have deteriorated. Social networks have given support groups a new platform. I am part of groups for Li Fraumeni Syndrome and Pediatric Adrenal Insufficiency that help me day to day. These groups really work for me because these conditions are so rare with rules for living that even docs just don't understand. These groups cover issues that standard of care can't touch- issues like how to live with life threatening illness. Although they are filled with different personalities- they are filled with people who have something in common are are trying to live their best life despite it. I finally arrived at the point where- it didn't matter so much how much was in my cup- I was there when bits fell out- and I at times exhausted myself trying to fill it back up.  Yet I also found people who could see what was in my cup and how heavy it was. Just having someone who understands and testify that although your cup is heavy- you can carry it. It may not ever get lighter- but it might and I guess that's why we keep carrying it. Sometimes they help you see the beauty of what's in your cup and you realize that you got so preoccupied with carrying the darn thing- you forgot to stop and really appreciate what you had in your cup. It's not about what is in anyone else's cup- everyone needs to fill it with what they want or what they can- it's about appreciating what you have in your cup and remembering why you were trying to fill it up in the first place. Sometimes the only reason to fill it is so you can share with others when they need a few drops of sunshine.

Au Naturale

Lily finally is on the mend. I know this because she is dancing around at inappropriate times, whipping her hair, legs and arms all around. This makes me happy. Not as much when she starts doing cartwheels in the house though, she's a big girl- now I have to get involved.


It didn't just resolve itself. I took her to my naturopathic doctor. In the "modern" medical world- naturopaths are considered quacks and charlatans. Some are. Just like some doctors are frauds and suck at being doctors. But if you find a good naturopath, it makes a difference. I met one such lady in Boulder and she is the type of doctor who makes me want to pack up and move back to Boulder- put on some birkenstocks(never have owned a pair, by the way) and just be healthy. Isn't that what doctors are for? 

No, every time I go to the doctor-doctor, I end up with a migraine. It's stress and worry and traffic and parking and rudeness. That is why people only go when they are sick- it's a last resort. So the Naturopath in Boulder referred me to a doc here- who happens to live in Waimanalo-one of the prettiest beaches on the island.  His office is attached to his house and has that old, beachy musty kind of smell- but I got over it because this place does not stress me out. Twice I have gone when I was coming down with or had a full blown cold- and twice- within 2 days of my visit I was better.  He has this electronic allergy, conductor thingy a mabob. I'll admit- the first time he handed me a metal rod and told me to hold it and touch my nose, I began to question the non quackiness of this whole operation. This electrodermal screening instrument essentially creates a circuit with you as the conductor. The doc can then introduce foods and such on a metal tray, to this circuit and if it doesn't agree with your energy- there will be resistance in the flow.  SO I'm thinking I am paying money for quackery. This is gonna be great- I might as well hunt down John Edwards and have him commune with my dead breast. The doc asks me what known allergies I have- I say tomatoes. I have like 5 that I know of, but it's my test.  There is resistance to tomatoes. Surprise. Then he tries various fruits and vegetables, cheese, meats. My 5 were all resistant and a few more. So he says try to avoid them, see if I feel better.  I'm still a bit skeptical, but I try. Now the acupuncture part. This is something I have always been curious about. I think it works. On a non measurable level- like positive thinking- if thoughts can change the outcome - why can't little needles help? Only one pinched a little and laying there was the toughest part- I have to work at trying to relax and hold still. It helps when you have dozens of needles sticking out of you- if you forget and go to scratch something- you get a nasty little surprise. So I imagine sunshine flowing in and out of all the spots to remind myself not to move. Oh God my inner hippie is being released. I've been several times- not headaches, no stress- I look forward to the appointments and the 10 minutes I sit on the beach down the road near his house and I've also visited the whole foods store after appointments. The biggest thing is that I feel better. I feel like I am learning more about natural ways to fix symptoms and that they work. It's pretty interesting.

So when Lily got sick and our team- who I trust- suggested the wait and see approach- I was not real happy. I know some things take time and especially with a system that has been beat down like hers-the body is a little sluggish, BUT from the mom point of view- I wanted her to not feel so yucky. SO I made an appointment for her to see my naturopath. I explain to her this is a different kind of doctor and tell her all about the machine he will use- but that mostly he will talk to her and ask lots of questions. Once she sees his dogs hanging around the office- she is set- she spends every moment playing with them. He points out that Lily is dehydrated. That could definitely explain the headaches. The other thing is- try to make sure she has protein in the morning, it will help stabilize her sugars. Basic stuff, but that can make an impact. He gives us several herbs and supplements to help her feel better and says to call him in 3 days to see if she is feeling better.  I trust him, but I take the supplements home and have to research 2 of them before I will even consider giving them to her.  2 are basic supplements- one is essentially broccoli and the other is minerals. The other 2 are silica and porcine duodenum- ick- pig intestine? He said the silica would help for the hot/cold issues she has and the pig gut was for her intestines.  I start my research- the typical silica patient is someone who tends to worry, is timid and shy. Well Lily worries, but she is not timid or shy. Yet this is a chronic silica user- I look up the occasional uses for silica- the hot/cold issue, getting rid of poo or any foreign substance, colds/flus and migraines.  It doesn't seem to have any harmful side effects, so I figure we will try it. Then I read it is used for those with profuse sweating, who tend to worry and are obstinant about their work. That sounds about right. The pig intestine- well there was actual science and support of how that works to soothe the intestine- go figure. All I know is that the pills smell really bad and Lily even scrunched up her nose- but took them anyway. In 2 days, she was dancing around again. She felt better, I felt better. Maybe it was just a virus and ran it's course. Maybe she needed some extra vitamins and minerals. All I know is that she is feeling better and faster than the wait and see approach. I know a lot of people with health issues. Some cannot be fixed by naturopathic remedies- but the naturopathic remedies can help support the immune system and combat negative side effects. I hope that truly integrated medicine- with an approach that supports health not just treating sickness- will someday be the norm. It's a high hope, but not unattainable.

The average time between Mallory hospitalizations= 6 months  +/- 179 days.

Wednesday night Lily was not feeling well. Sometimes when Lily has to air in her tummy- it's like the world is ending. Normally- in a 7 year old- such behavior would not be tolerated- but she is given a minute amount of slack since at one point in her young life she was split in half and opened up. I knew we were headed for trouble when she didn't eat dinner. It was pork tacos- not much can possibly come between Lily and as many bites as possible of pig. When I cook pork in the crock pot- she walks into the house and begins to jump up and down screaming- I LOVE pig!! Wednesday was no different- except after 2 bites of pig- she went and laid down on the couch. My mommy sense tingled- we were in for a long night.

After her second time waking me up- I took her downstairs to sleep on the couch with me. I knew Phil was flying the next day and I needed him to get enough sleep. We spent the night with Lily wrapped around me, sporadically screaming and kicking- falling into sleep when the pains passed only to wake up and vomit. I gave her extra hydrocortisone and hoped it would be like the week prior- a little bit of puking followed by a day of resting. Not so much. While I was getting the other 3 ready for school- I gave her another big dose of hydrocortisone. It came right back up. Ugh- I know what this means. I decide to let her tummy rest- get the kids off to school and give her meds one more try. Although she manages to swallow one pill- the pain is bad and she is asking for the shot. When the stomach pain is severe enough for Lily to ask for her IM shot- that's speaks volumes. I call her endocrinologist. She tells me what I already know- it's time to give her the shot which is an automatic trip to Tripler and a 24 hour observation period. I get out her shot and manage to stab my finger with the needle as I am opening it. Ugh. Now I have to find an appropriate sharps container- which you would figure in a house with a diabetic wouldn't be as tough as it was. Lily is writhing around begging to go to the hospital. I am beginning to wonder if there is a little man with a funny name I can give my first born to that will alleviate this curse incurred by our family. I get her shot loaded up with a new needle and although she says ow!!- Lily doesn't flinch. Now it's time to pack a small bag and hope for the best. I decide to travel light, which is stupid, idiotic, and just plain silly. I know better. Phil later laughed at me saying- yeah- that's quality denial right there- kind of like the time I drove Phillip to the acute care clinic thinking they would just prescribe up some insulin and send us home.

Our time in the ER, expedited by a call from our endocrinology team was a swift 5 hour visit before we were transported up to the ward.  All hopes were on this being a quick virus- yet as the hours dragged on and there was no fever, no more vomiting, or diarrhea- flags were being raised. Lily writhing around in pain every time a doc walked by bought her a trip to morphine land- which although funny and a relief from pain- makes a mommy cringe. If they are giving the 7 year old morphine- we have more to worry about than a virus.  That also buys us a trip down to xrays to make sure there isn't a major city or anything residing in her abdomen. All of our favorite nurses swing by to check on us- even Lily's surgeon stops in to say hi. Always a good idea to have her near.  I watch the clock until the approximate time Phil is supposed to land- I get the text he is always so kind as to send and reply with a request for him to call when he is done debriefing. I know he will be upset I didn't tell him sooner- but flying is the one part of his job that he loves- no sense in us both sitting around worrying for that hour and a half. He calls right away and asks if Lily is doing worse. Um- kind of.  He says he will be over to Tripler as son as he can. Hate those calls. I hate that I keep having to make them. I hate that people don't know what to say and that we have become so accustomed to crisis mode- that it is our normal. When something becomes your normal- people assume you are fine and can handle it. If it weren't for my neighbors and the friends we have at the hospital- we would feel completely alone in this. In a world where Twinkies meeting extinction is a crisis, not sure where we fit in. Oh well- back to what we do - just keep swimming and be grateful for our time together-even if it is in a hospital room with the incessant beeping. 

When Phil gets to the room, Lily has a look of horror- I want mommy to stay!  Our routine in the past meant Phil spent most nights- I don't do well in the late hours. I reassure her that daddy cannot stay- he has to work tomorrow.  He makes sure I have food for dinner and I get him up to date and he heads home to relieve Monica from babysitting duty.  My IOU list for her is so long now- I don't even know where to start. Lily and I settle in for the night. When the meds wear off, she is still in a lot of pain. By morning, the situation is the same- which isn't a good thing. At least it's not worse. Phil drops the kids at school and brings me coffee. I love that man. He too sees the score. The time vaccuum that is the hospital takes over. A particularly bad wave of pain buys Lily a CT scan. Fortunately the new ped oncologist is the ward attending- she is fabulous. I get the eerie feeling the powers that be are at work aligning the forces for Lily and it is reassuring and unsettling all at the same time. The CT has to be done with contrast. Oh happy happy joy joy. One sip of water instigates 30 minutes of writhing- 32 ounces of contrast may just kill her. We load her up on morphine and zofran and get to work. After 2 sips she looks green and just shakes her head. Phil offers her a movie- she chooses Tangled. I have an idea- a wonderful, awful idea. I ask Lily- How about every time they say hair or light in the movie- you take a sip? She shrugs- Ok. Which word do you want to do? I'll do both she says. Phil is shaking his head at me- you are totally going to hell he whispers, for the contrast drinking game. All I can figure is that when she gets to college- she will suddenly have the memory and then she will have the resources at her disposal there to effectively deal with it. After all she will have perfected the drink vile stuff and try not to puke part. We made it through the contrast and get down to CT- which showed a little thickening of the appendix wall- one more thing to keep an eye on and several swollen lymphnodes which could be due to several factors- all of which require a careful watching period.  So that's where we are. We are waiting and watching and hoping for the best. Phil spent the night last night- I came home and crashed with a Bella who is obviously distraught that her roommate is absent, Kiera is busy retreating and withdrawing- that's how she handles it and Phillip finds it to be a great reason to be alone and watch inappropriate programming on television. SO I guess it is kinda normal here.