Training: Exercises in Parenting

Phil is currently creating his Disney Trip mix: he who knows Buddha knows that life is a series of mixes. It is surprisingly techno from what I have heard- a bit heavy on the Hannah Montana for my taste- oh wait that was Kiera's mix. Never mind.

The other night after bathtime, Kiera comes downstairs-her shirt streaked with blood. I do the initial scan for the source. She has 1 earring in, one in her hand, dripping with blood. In the past few weeks, Kiera managed to lose all but 3 of her earrings. A copper pair(mismatched, Sophia made her 2 sets, thee are the remains) and a single lonely post earring without a back. She decided this particular evening that it was time to put earrings back in after a short respite(meant to read- weeks, possibly months). Kiera's ears were pierced on her birthday- In April. Her holes had obviously healed. She tried to repierce them. As I looked at the situation, Blood was dripping down the "successful" side.

I retrieved the bottle of rubbing alcohol and proceeded to try and disinfect her as much as possible. All the while she is crying, not because it hurts, but she wants to wear earrings. I agree to buy her a new set of stud earrings, put them in, and she will probably have to wear said set until adulthood or she decides to be responsible, whichever arrives sooner.

So Kiera goes to spend her Saturday with her adoptive family and we run through a lengthy list of errands. Lily decided she needed to wear a jacket and pants, and about an hour into the session- I realize she is dripping buckets of sweat and her mood has deteriorated and she is laying on the floor in the mall refusing to communicate. I ask her if she wants to help pick out Kiera's earrings. She says she wants earrings. I agree to get her off the floor. We go into Claire's at which point Phil asks Bella if SHE wants earrings. She does. Like Kiera's. Phil and I look at each other and shrug- if a hole in a child's stomach heals in a couple days(+ or -, sort of- ball park reference here) two little holes will be fine in Bella. Bella did not witness Kiera's piercing, she has no idea how it goes down. Right up until the little white guns shoot earrings into her little lobes and she lets out a blood curdling shriek- I think one of the mirrors broke. Phil grabs her as one little tear streams down her cheek to check out her blingy new reflection. All is forgotten.

Lily wants 'earring aids' too. We tell her she already has them. NO! she demands Earrings! Ok, climb up. Is it going to hurt? -Yes. A lot? No. it's a quick hurt, like your port. I don't want to. Ok, let's go. By the time we pay for Bella's earrings, Lily has developed a twitch, waiting for someone to spear her earlobes. Yet by the time we are out the door she wants earrings again. Now. We turn around. No, maybe not. The result was 40 minutes of her screaming in the car about how much she wanted earrings, followed by her passing out on the couch. Phil and I weren't technically sure she is allowed to have metal spikes in her ears yet, but again applied said hole into stomach reasoning this morning when she woke us up demanding earrings because we might have mentioned something yesterday about going tomorrow as I was punching a hole back into Kiera's ear. SO we pack up the troops and do round 2. I tell her if she chickens out- she will have to wait until adulthood to get earrings. She tells me- I sit in your lap, go OWW! and then look in the mirror and I have earrings, right? right. Ok.

She climbs up in my lap. The lady asks which ear he wants. I say- SHE wants both. Unfortunately earrings will do nothing in the way of decreasing gender confusion for Miss Lily. The lady is confused. She proceeds anyhow. In her defense, the only information given in addition to the 12 signatures required to get a child's ears pierced is their name. Pause. The review the paperwork carefully. Pause. And the child sitting there has a deep purple velvet dress on and purple and pink hearing aids. Pause. We carry on. Lily says ow! And daddy takes her to see the result and all is forgotten. Now I have three little sets of earrings running around looking at themselves in the mirror. Actually, Bella and Lily have completely forgotten they have them until Kiera sees theirs and reminds them that they need to clean them and they can't take them out.

I am excited that my next blog will be from sunny Florida! In the event that any ears end up infected, I will erase all evidence of aforementioned proceedings....

Make a Wish Barbie

We had a special visit this weekend from 2 very special volunteers from the Make a Wish foundation. They came to personally grant Lily's wish to go to Disney World! They brought balloons, a special Make a wish bag, t-shirt and button and a very special edition Make A Wish Barbie. We were given our itinerary and travel information and will be staying at the amazing Give Kids the World resort for a week of our trip.

As always Phil and I are completely blown away by the generosity of this gift. Travel arrangements, car, lodging and food as well as tickets to the theme parks for a week for six of us- the only questions asked were what are your birthdates(needed for airline purchase) and any special needs? EVERYTHING is taken care of for us. It is amazing. And overwhelming. The only expectation of us is that we have have the time of our lives. It's astounding that for 2 organizations who you rarely ever see soliciting donations, continually give so generously to families like ours. The gift is not prorated on our financial circumstance, no strings attached. It is a gift. Until we were awarded Lily's wish, I had never even heard of Give Kids the World. A resort for kids like her. We wanted her to be healthy enough to really enjoy this. Another part of me fears that since she no longer looks sick, we might feel like we don't belong. Someone asked me once if we had to pay Make a Wish back if she doesn't die. My first thought was - I'd be happy to pay them back 3 times over if she doesn't. But Make A Wish is very clear- these gifts are for any child who has faced a life threatening illness, it does not have to be terminal. I will again point out that life is terminal. So I started researching Make A Wish trips. I wanted to know what to expect. And just like researching Lily's illness, sometime too much of anything can be -too much. I read families' stories and blogs, one woman used the word nightmare 8 times in describing their trip and from what I could tell, the worst part was that it rained while they were there and their "free" accomodations weren't as spacious as they'd have preferred. The paperwork clearly points out that Make A Wish Foundation can not control the weather. Another woman's child began to decline quickly while they were there and had nothing but a positive attitude and praise for their trip. In one QnA, a cast member(Disney employee) when confronted with a tirade by a woman in a wheelchair upset that a Make a Wish child got front of the line priveledges and she did not ,answered; the upside to being a wish child at Disney is that you get front of the line priveledges, the down side is that you have to have cancer. I laughed so hard at this answer that I started to read it to my husband; I was about halfway through when I began sobbing. It has become such a part of our lives, that we forget it is not normal. We're in Cancer purgatory. We see normal which seems like heaven, yet part of us will always be worrying if and when it will be back, tying us to the cancer. I'm looking at this trip as our unfinished business. The birthdays we had to skim over last year, we will celebrate. The times we were too tired to go to the park, or we couldn't go out to eat because Lily was neutrapenic- we will get our chance now. The holidays we were too tired to put in the extra magic. We have been given such a precious gift. The chance to be together. 11 months ago, I laid next to Lily in her bed fearing she would be gone before I was ready to let her go. Now I know that I will never be ready to let her go. I know that if she goes before me, I will never be the same but I will go on as I expect others to go on. We gained perspective on life and love that many don't learn, until it's too late. We get tired, I still yell, we make mistakes. This is what we fought so hard for.

As Lily demanded her special limited edition Barbie be taken out of the box, I didn't flinch. It occurred to me that Barbie dolls are like children. If you leave them in a box, they might be protected and stay clean, but never realize their potential. So much more can be attained by playing with them, loving them. They might get scuffed up and their hair will get tangled and sometimes cut in a strange fashion, but they are still the same doll. And even though it might be nice to let someone else play with them every now and again, you still take them home and tuck them in, loving them more with a fresh perspective.

2nd Belly Button

Fortunately Phil has been home for bath time the past 2 days. He took care of bandage changes. There really hasn't been any leakage. Lily's been eating normally and even went swimming with her bud Maggie yesterday. She let me take a picture so you could see. It is now referred to as her 2nd Belly Button. It really is, if you think about it. Looking at it still gives me that crawly feeling in my stomach, but it is healing nicely.

ICK ACK EEK and UCK.

Today was a big day. BIG. HUGE. Lily got her button out!

Tuesday night we got a call from the automated appointment system that Lily had an appointment on Thursday. It would be TOTALLY useful if they would include WHERE said appointment is, so Wednesday I called the appointment schedulers to see. It is with her endocrinologist. I have this overwhelming feeling I am forgetting something so I also call Florence at the Onc clinic to see if there are any orders or notes or anything in Lily's file that says I should be doing something. She laughs. I guess I am officially in the getting back to normal phase- which includes forgetting things. I have less to keep track of, so I forget to write things down. I think- sure 1 appointment, surely I can remember that. Apparently not.

So we mosey on into clinic-say hi to the fan club. Get vitals taken, visit some more. Dr. P jokes that we are having entirely too much fun at the hospital. I tell him- this IS fun comparatively. That earns me a hug. We go to see the endo doc. Everything looks ok. Lily hasn't grown at an astronomical rate. She hasn't gained weight, but she is more active and is eating fine. Lily and Bella are having a carpet picnic of Doritos and Juice boxes while we talk. Did I get the labs drawn? Aha! That is what I forgot. She is easy going- just get them done next time she's accessed. How's 10 minutes from now? Perfect. Yea.

Back to the other side of clinic. Lily was a champeroni. She laid for the accessing and just held my hands. Miss Angela- one of our fave nurses was fabulous. I was stressed that Lily wasn't bundled- but it was one of those situations where you raise the bar and they clear it and you wonder why the bar wasn't there all along. And then you remember the last time she kicked the bar clear off and we said- maybe next time. SO her doc pops in and checks her out- let's get the button out.

Um. Ick, ack, eek and uck. But doesn't that require stitches and she needs to be swim ready for Disney World? Apparently it requires taking the button out and a band-aid. My stomach is churning. I can deal with bodily fluids. I've cleaned them all up. Puke, poo, blood, pus- the gamut- but open access to the stomach and it's contents grosses me out. My knees already feel wobbly. Miss Flo calls a surgeon to double check, yep pull it out, put a band-aid on it. If it's still oozing in 2 months, we'll stitch it. 2 months! YGTBSM! Ick, Ack, Eek and Uck . Florence assures me that stomach contents should only leak for a couple days. No no no no no. That will not do. I am given special dressings for swimming. Swimming? But there's a hole in her stomach. No different than swallowing pool water. It doesn't increase her risk of infection- it's just that pools frown upon people swimming with open sores. Really? Ya think? Ick, Ack, eek and uck. Here's me frowning at my daughter having a open tunnel to her belly for days.

Lily is climbing up on the table and laying down. C'mon mom! It's pretty impossible to hold her hand and not watch. The tube comes out, as she breathes the little hole closes and opens. She laughs when she realizes it doesn't hurt- a piece of orange oozes out. Oh god. This is heinous. Ick, Ack, Eek and Uck. It's gonna be a long time before I'll be able to eat Doritos. Lily won't let Florence clean it- she wants me too. I DO NOT GET PAID ENOUGH. So I am relegated to cleaning off day old belly boogers mixed with Dorito digest all the while the damn hole keeps winking at me. I get it clean enough that Flo can slap a dressing on it and I can pretend that my daughter's stomach didn't just wink at me. When the nausea passes we will celebrate accordingly.

If you are interested in the procedure. Here's an at home demo of a little girl name sadie. It is way simpler than one would guess. And a lot more disgusting in person. But yea LILY!

http://www.youtube.com/watch?v=2lbwypqyPLk

Silly Lily

A friend sent us a care package all the way from England! Inside was a special poem just for Lily that I have to share..



There once was a girl called Lily...

Who's hair was all wild and Frilly...

Whether up in a 'fro,

Or a hawk of faux...

She ALWAYS looks Stylish, not Silly!





This very special lady and her husband came into my life a few months back. I was searching for answers, looking for statistics to calculate Lily's prognosis. Trying to make order out of the chaos that was my life. All the papers said this cancer was very rare and had a poor prognosis. I had been talking with my cousin who casually mentioned running across someone online who had Lily' tumor when she was little and also has LFS. I immediately asked her to pass along my info. I had yet to find an adult survivor of adrenalcortical carcinoma. I read the scientific papers, I joined the pediatric ACC group online. One paper mentioned 1 survivor at the ripe old age of 28. I Found a couple survivors in their teens which was a positive. All I really learned was that this was indeed rare and the prognosis was poor. I wanted to know what to expect. 'You can't always get what you want, but sometimes....'



This lady is amazing. We chatted by email, then instant messaged and finally had a "proper" conversation via skype. She is one of those people that as long as I live, and probably after- I will be glad our paths crossed. She is real, and inspirational and knowing her gives me hope. Her life has not been easy- she has faced cancer after cancer for 31 years of this uphill battle that we who have this mutation share. But she has hope and she loves life, embraces love and she has a spirit about her that is kindred to me. She reminded me that there is a person behind every statistic. And each of those people has a story.



So I have been wandering around wondering what now? Should we just float by day to day? Dare I make plans for the future? Should I start that book you all keep saying I need to write? Maybe I should clean my house? By aging 7 years in the past year, I have been thrown head long into a mid life crisis. By Connolly standards it's more of a 2/3 life crisis, but I digress. I realize that I'm hopelessly out of touch with friends and that facebook is a really crappy substitute for a phone call. I realize that last year my life came to a stand still and the world kept swirling around me. Now I have to catch back up. Part of me wants to know what the hurry is to catch up. I am here for a reason. Most days it's to play referee between my children. Some days I am tempted to let them fight to the finish and then I remember how hard we worked last year to keep them around. And so I intervene. Begrudgingly. Only to have to repeat it in 5 minutes. I look to my partner, my best friend, the love of my life- he has answers that keep the computers, tv, and phones running- but he can't get the children to behave either. We sink into the couch, ignoring the almost tribal yells erupting around us- gaze into each other's eyes and smile, and wallow in the normalcy we once craved. Basking in the every day nonsense that gives me the cause to ponder- what are you gonna do next?

I'm gonna go to Disney World. :)

BurgerKane...

We saw multiple hurricanes in our years in the Florida panhandle. Kiera used to call them Burgercangs. She now calls them hurricanes and Phil and I still call them Burgerkangs. I get a good idea on how much prep I need to do based on what they do with the jets. If the jets leave, it's gonna be big enough to worry. The jets are still here. With the exception of the contingent still in Singapore- stuck due to the typhoons in that region. SO we picked up the backyard, yeah it takes a major storm to inspire that and got some extra food and water from the store. I learned in Florida just to keep a big thing of water and a Hurricane kit up in a closet- so there isn't really anything big to run around and look for.

I was folding laundry yesterday and Bella came and sat on a freshly folded pile, I really don't know why I bother. If you see me and my shirt looks like it's been crumpled under a heap- you will know I have finally given up on the cause. "It's gonna wain momma". Yeah probably tomorrow sweetie. "And wind is gonna blow." Ok. "I'm gonna be scary" It'll be fine Bell. That's her way of letting you know she'll be scared. She's nice enough to warn us when she's gonna be scary. You know she's scared when you hear the shrill scream. "Ok, love you too momma" and she ran off leaving a trail of clothes behind her.

Kiera was like a broken record- we need to watch the news. My teacher said. Mind you it's sunny and apart from 3 more clouds than usual- there is no hint of the storm coming. We took bets last night as to when they would cancel school. Phil and I recounted the number of times we waited for school to be cancelled with like 3 feet of snow on the ground and we still had to go. He's usually good at adding- and it was both ways up hill, in snow shoes. He's sooo my lobster. But the storm slowed to a tropical depression- so now it won't hit until later Tuesday. We still had to watch the news this morning with Kiera to make sure school wasn't closed. Again, sun was shining brilliantly even though there were some dubious clouds to the east- I wouldn't go as far as to call them threatening. I walked them to school. It's still sunny, Phil's capitalizing on a little extra surf and then he is going to take Lily to her Ultrasound while I go to the library and get the kids from school. The ultrasound is to double check her abdomen. We don't expect to see anything.

I'll let you know how the storm pans out. I was thinking this morning abut storm chasers. They had the hurricane trackers on the news. It made me think of the different types of people in hurricane prep terms. You have the chasers- who go flying into the storm to see how bad it is and see the damage first hand-they are in the action but merely observers. They let everyone know exactly how bad the storm will be, so they can prepare. After the damage is done they don't stick around, they are off chasing the next storm. Then you have the evacuees- people who see the storm coming and get outta dodge. They will come back eventually to pick up the pieces, that is of course if there are pieces to pick up. They will be safe. And then there are those who batten down the hatches, look the storm in the eye, some loyal, some reckless- all determined. They will be the first on hand to help clean up the aftermath. Of course there are always those who close their eyes real tight and keep saying "there is no storm, there is no storm". Just a thought. Jack Handey would be so proud.

No Evidence of Disease

The official radiology report came out and Lily's doc called right away. I'm sure it had nothing to do with her mysterious 104 degree fever....but I was extremely grateful for the call nonetheless and moreso because of the results. There is no evidence of disease in her chest or abdomen. Yea! Rinse and repeat in 2-3 months.

Other BIG news- Lily is back to swallowing her steroid meds- which is hugely convenient. It means I can pack just pills when we are out and about and not pills, syringes, extension tubing, and bottled water.