Sunday, November 30, 2008

Not to the bottom yet and still breathing.

I loaded Bella in the car Saturday to go to the hospital and the van wouldn't start. Darn it Murphy, we need to have a talk. That morning Bella was screaming at Kiera about something. Kiera informs me that Bella had the keys and was playing in the red car so she took the keys away. Safe move. Bella often tries to start her lil red cozy coupe with my keys and they are routinely confiscated before they are lost. Well ,as Kiera then informs me, Bella was playing in the van in the garage. I probably should have checked it at that point, but something else came up. So fortunately I made a call, got a jump and the battery and alternator both checked out.

I make it to the hospital and Phil is drained. About 5 minutes after he left I have the clear picture of why, lily is clearly not feeling well and it is showing. She wants this, no that , no not THAT, that. Do this, do that, no do it this way. Wow this is a bundle of fun. And then there were medicines and a shot to give. The whole time she is screaming for daddy and Santa Claus. That's funny, he swears that she publicly disowned him approximately 3 times prior to my arrival. When she gets mad she tells him "you're not my daddy anymore." Morale is low. We keep muddling through. By 11 my desire to put up with any more muddling is over. We are going to bed, end of discussion. I am laying next to her on the oh so comfy hospital bed and she is glaring at me. What? "Stop that" she tells me. I haven't moved, I'm barely even breathing. "Stop that, THAT!: She then takes to fingers and shoves them up my nose. Breathing? "Yes, stop breathing." I think I'll go sleep over on the pull out chair. She rolled over and yelled at me a couple of times but went right back to sleep. I think I was grateful.

I know she has got to feel awful. I know how terrible I felt with morning sickness and that was normal- I wasn't being poisoned. Her counts are still dropping. Her platelets are at 23(23,000 per microliter of blood) normal is 150-450(150,000 to 450,000/micriliter). When she gets to 20- she'll have to have a transfusion. The problem is that it only gets worse during subsequent treatments. The bone marrow plugs these cells out at different rates and each time you deal it a major blow like chemo it takes longer to recover. Her rash is also spreading. There is a specialist( the ID man) coming in tomorrow to take a look. They are guessing that it's shingles(related to chicken pox)so she has also been started on IV antivirals. She rolled over the other night and banged her knee on the guardrail and it left a cut. The injection sites bleed more and bruise more.

Poor Pooh gets tortured almost as much as Lily. Lily was given her own disposable stethascope. She spent a few minutes trying to find his heartbeat and caught on when I was tapping on the chair. Pooh has been poked and prodded and still has bandaids that may be permanently attached to his fur. He's has his temperature taken(waaaaaaaaaaaaay below normal- but then again I can't really say what normal is for a bear). He also was almost forced to wear the pulse-ox overnight and was only granted a reprieve when Lily got all tangled in the cords and decided that he didn't need it. Fortunately the staff has been very accommodating to Pooh. I did notice he didn't get yelled at for breathing.

Saturday, November 29, 2008

Lyin Low.

Lily and I just hung out yesterday. She can leave the room to go for walks, but has to wear a mask. She spent the first trip touching everything disgusting and then reaching up under her mask to try and scratch her nose or suck her thumb. Note to self: pack pocket sized sanitizer for walks. The mask became easier to take when she committed Pooh to the same discomfort. Julie came in to periodically check on us and supply her with special sanitized toys from the playroom for our in-room enjoyment. We got a shoebox rubbermaid filled with miniature dollhouse furniture and a few dolls that matched our family dynamic. Here's how Lily views our family: Daddy goes to works when he comes home he tosses her and Bella in the air, Phillip does homeworks and watches TV, Bella takes naps, Kiera goes to the parks and Lily plays with mommy. Not bad- I figured she'd make my doll run around and scream- so I guess I'm doing OK. That or Lily is waaay smarter than we even give her credit for and she was being nice since I was right there. The pluralization is not an accident - that's how she talks. It's very cutes.

Phil came to the hospital after works and did not throw lily into the air. Given her low blood counts that would have been bad. She was sleeping and I decided it was best to sneak out before she woke up- that way she could wake up happy to see dad and not go through the separation anxiety of watching me leave. After talking with her doctor yesterday I was given the impression that this stay could be a long one. Hope for the best, plan for the worst. Her counts have to be up in normal range, no fever for 24 hours, and no signs of infection. Her counts are getting lower still, the bottom(or nadir as the professional types call it..) is yet to come and it could take days to weeks to recover. Ugh. Phil was supposed to work again today but fortunately his family there is doing for him what he does for me- taking over when they can. He was planning on working and we had child care covered, but it is so much easier now(Thanks guys!) It's really tough because we know it's gonna be a long journey and we don't want to call in all our favors when we could really need them down the road. They were nice enough to take it out of his hands. He also is unable to give work his normal 110%-although I know he tries- since I am requiring an extra 200% at home(we can do the math later... I 've been told doing it(math) in public never works out well.) There is a very high potential for burnout on all fronts. Although after this morning's pukefest by Lily- he may wish he was back at work....we'll swap out again this afternoon.

Friday, November 28, 2008


Lily developed a fever last night around 1am so we are back in the hospital. Her white blood cell count is 200 so we are on neutropenic precautions. She is on antibiotics until infection can be ruled out. She will probably be here for a couple of days. Phil is at work so stew and jackie are with the other 3 monkeys. I bet there will be no pie left by the time we get home!
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Thursday, November 27, 2008

Happy Thanksgiving!

Thanksgiving is tough work. Stirring the punkin pie mix, playin Wii with dad, watching movies. It's tough stuff- takes a lot out of a lil person. Phillip is faking by the way- Lily is not- crashed mid game with dad. We had a restful day, everything went well and for that I am thankful. As we ate dinner, we went around the table and everyone said what they were thankful for. Lily looked thoughtful for a second and says " Chicken! Can I have more chicken please?"

Wednesday, November 26, 2008

Hair Today- Gone Tomorrow.

I know that Lily is going to lose her hair. We cut it a few weeks ago and I guess I didn't figure it would keep growing so fast. Lily has never liked her hair washed, or touched, and sometimes even looked at. She's got a tender nugget..and that's only gonna get worse. So since she's started chemo, I haven't been as diligent or insistent about the hair washing. Unless it's puke scented- then it's gotta get a scrub. She doesn't like ponytails(won't be an issue for awhile) headbands, hats , or bows. She'll pick them out and promise to wear them, but they are filed under dress-up accessories and not everyday attire. We were told hair loss would start gradually this week and then build. Monday night Phillip yells for me to come quick to the bathroom. I have just dispatched him for his shower and I figure someone left something all over the bathroom. "There's hair everywhere in the tub." I have 3 girls. There is almost ALWAYS hair in the tub, but Phillip has been particularly sensitive to this aspect of the chemo side effects and has literally been dreading Lily's loss. I thought it was an overly sensitive Phillip moment because I hadn't even washed her hair...but there it was. And so it starts.

In a sleep deprived moment, I had decided it would be OK to take Bella with me to Lily's check up. A rational Jen would have QC'd that decision as she placed the Synera(numbing) patch over Lily's port. The whole point was to draw Lily's blood to check her counts. It's always good to have an extra clingy 2 year old in the room for that. Live and Learn. We managed. Basically when all else failed Bella was supplied with Rice Krispie Treats and Barney videos and she minded her own business. Lily has a little rash on her neck that we are trying to identify- nothing major, might even just be bug bites- but better safe than sorry. It couldn't possibly be from any of the nasty drugs we are pumping into her. Her blood counts are still in "normal" range and we go back Saturday for the next check. As I was holding her in the office, I noticed about a dozen more hairs on her shoulders. It's time. I gotta get it cut shorter. We stop by the kiddie haircut place on the way home. She is so tired she doesn't even fuss. Bella keeps asking if it's her turn yet. She then checks out Lily's finished product and decides she doesn't really need a haircut after all. Lily has never been super-feminine despite her name. Her hair has been her identity, it's hard to see it start to go. But like anything in life- it will be temporary. And rumor has it that hair grows back curlier after chemo- THAT I've got to see! For those who may not have been able to experience it...

Things you don't want to hear as your child is running past...

Mom! I have to poop- go look at the chair.

Monday, November 24, 2008

On to Week 2

We made it through week 1 of chemo. 2 more weeks then rinse and repeat. Lily got through it with her usual spunk and charm. Yesterday she was going through her apologies- so I know she must have felt a little better. Mommy I'm sorry I kicked you at the sospital and threw up on you. Daddy I'm sorry I threw up in your car and threw up on you. ... We have one amazing little monkey. To celebrate, we went to the mall to see Santa. Jackie and Uncle Stewart decided this was waaay too much fun to miss and came along for the experience. Not the ideal afternoon out for the 20-something sect, but AWESOME birth control.

I had decided for the big day out, Lily needed a itty bitty bit of happy juice(ativan) a kinda sedative anti nausea drug that does help her nausea but doesn't really sedate her. I pack the bag carefully so I know exactly where the little emesis basin is and the wipes and her meds as well as the normal stuff. We get to the mall around 2 and of course Santa is on his break until 3. Fortunately there was a greek dancing troup(as in country- not a group of drunkin sorority girls) that was there for our entertainment. Lily and Bella are thirsty. Phil finds Lily's juice cup, but can't find Bella's so he empties the contents of my neatly organized and relatively clean bag onto the mall floor. UGH. boys. No juice. Belle does this all the time- she sneaks her juice outta the bag and leaves it on the floor, at home. Oh well. Her bad. There she goes making her 2 year old decisions. When it's over the kids convince Phil and Stewart to buy cookies and soda. I can see the new book now...4 little monkeys jumping on the Santa. Next to the cookie shoppe is the jungle toy store/arcade. Yeah there are no germs there. We were told that this weekend would be our best shot to take Lily out and about- next week her counts will drop and we'll be isolated. Yesterday Phil took her and the older 2 to a movie since it was pouring rain. We also kinda wanted to get a Santa picture before she loses her hair. Just a personal preference. So goals for today- See Santa. No puking.

We make our way to Santa- where the line is already building. You have to wait in this little house/tunnel and after about 10 minutes everyone is getting hot and crabby. Bella finally spots Santa through a window and her and Lily take turns running ahead in line trying to get a better view. When Lily is not doing that- she is using Jackie and Stewart as a jungle gym. We finally get to the front of the line. It's good that she's feeling better, but a little decorum please. Bella takes two steps towards Santa and freezes. The other kids are arranged around Santa and I can feel her clamping down on my shirt. I have two options as she starts to scream NOOOOOOOOO- I can duck out of my shirt and throw her to Santa or I can be in the picture and make Phil join in the fun. I am kinda wishing I had gone with option 1. I don't know if I am or not, it definitely looks like it in the photo, it could also be that I was further forward(yep that's gotta be it) but I actually am bigger than the fat man in the red suit. I had heard rumors across the nation that Santa's slimming down, just like years ago when health issues demanded he lose the pipe. But seriously - I know he's magic- but if he can magically make the cookies he eats disappear- than he needs to get his butt outta that chair and get a kiosk- cuz that's where the money is.

We take a turn around the mall and Kiera says can I get my ears pierced? And Phil says "sure". She clearly was not expecting that and immediately starts to panic. Cancer changes things he says- last time I heard him say that she had to be 12. I'm allergic to metal, so it sounded fine to me. She has been begging for it since she started school-preschool . She says "Lily has to go first"- Phil shrugs. No can do kiddo- Lily's on chemo- not the best time to plug metal posts through her ears. "Fine, then Jackie." That we can do. We trudge to the nearest Claire's. Which apparently is on the other side of the universe. We are waiting for our 3rd elevator and it opens and immediately starts to close. Instinct takes over and I thrust the stroller forward. This is not my big mammer jammer stroller that would scare the elevator- this is the little umbrella stroller I got to get Lily in an out of the clinic. And it has Lily in it. I retract it before any harm can come to Lily or the stroller and have 3 adults looking at me like I have lost my mind. Sorry- I forgot Lily was in it. But why didn't you stop the elevator? Phil asks. Aha- and that's why the mommy gets to push the cancer patient around.

We get to claire's and Kiera's in full on panic mode. She and Jackie pinkie-swear they'll do it and Jackie hops into the chair. She even lets Kiera pick out earrings for her (bold move) and Kiera says"but what if I don't do it?" And Jackie hops out of the chair. I'll spare you what transpired in the next 20 minutes but Kiera does not have her ears pierced. We make our way to dinner where Lily is literally banging on the table and screaming at the top of her lungs "I want cheese pizza!!" The out of home food conveyance technician has already been dispatched for cheese pizza. We haven't even ordered and Lily has eaten her pizza(well a slice and then offered the rest to Jackie and Kiera.) She's done. Let's go. Mind you it is now actually dinner time and the rest of us are actually hungry. Jackie ,being the sweetie she is, takes 2 of the 3 female monkies outside to the play area. The 3rd female monkey runs after them...which means so must I because the boys are engrossed in some conversation. Just as Jackie shoos me away to go eat dinner, Bella chucks a ball at Lily's head. Now I must stay and play, says Lily. And by play area, I mean a box of hand me down toys thrown on the sidewalk in front of the restaurant. Also very clean, I think I just threw up a little in my mouth. I did buy a pocket sized lysol to go with my pocket size germ x and I think I am soon going to need bigger pockets. It was such a bargain too- for a full 25 cents less than a ginormous bottle- you get a miniature version. I think putting Lily in a padded space suit may be more practical and cheaper too. On the way home Phil is complaining about how slow service was. I wasn't paying attention as I was eating my dinner which had been boxed up. But it was a success because all objectives were achieved. We saw Santa. There was no public puking. Outstanding.

Sunday, November 23, 2008

Helping Hands for Lily

I know you all may find this hard to believe, but I have no idea about anything that's going on with anything except Lily. Rumor has it that there is a holiday this week. The only reason I know this is because we have had so many kind offers for Thanksgiving dinner. We will be having a quiet holiday at home because Lily's blood counts will be the lowest at that time. We will also not be having visitors for the same reason. Thank you so much for all the offers. My plan is to cook....I want to. I am prepared for the fact that part of our family may have to be back in the hospital. But I am hoping for the best. Plans can change. The kids will be just as happy with chicken nuggets as long as there is punkin pie.

As I alluded to yesterday... I have the most amazing group of friends. I had no idea HOW amazing. Friends who hijack contact lists and build websites. I knew I kept you all around for a reason...xoxoxox

Some of my dearest friends have put together a blogsite called Helping Hands for Lily and the Mallorys in order to help us with some of the emotional and financial challenges we will face this year helping Miss Lil fight cancer. Fortunately the military covers all of our medical costs, which is a major plus. There is a section in the blog for comments which is my favorite part. Phil and I are completely awed by the support we have been given from across the ocean as well as here on the island. From old friends(age as well as timeline...hee hee hee) new friends, and even complete strangers have come together for us. It is humbling.

Saturday, November 22, 2008

A day at a time...

I know there have been a lot of questions about things. It's OK to ask. I try to cover things on the blog, but lately my entries take 6-8 hours to complete- some days it's a sentence at a time between all the other stuff. I write when I am stressed and when I can. Phil inherited this gene that makes him buy things when he's stressed(better than the gene for cancer). And since he loves me so much, he buys technological things for me. Of course I "let" him use them, but they are "mine". When Lily was diagnosed with a tumor- I got a laptop- he did get an amazing deal on it and I love it. It made doing research a lot more portable and I can hold 2-3 kids while "researching". When the diagnosis went from bad to worse- I (we) got blackberry phones which are even more amazing and now I understand why people are glued to them. If you have the means, I highly recommend one, they are so choice. So I can blog via phone at the hospital, when Lil naps and I am not running to the bathroom or grabbing a bite to eat- I type. I put the phone by the window and it sends the messages when it can find a signal. It's a way to vent, be positive, and helps me remember. My memory sucks these days. I used to keep journals, this is just a little more public. And now there will be all this evidence when they finally commit me. One of the hard things when you are going through this is to answer the same question over and over. The blog keeps those who care informed and saves me (and Phil and my mom) from making a billion calls. I find time because it helps me. I won't always be positive, but blogging helps me to be. If you have questions you can ask in the comment section. I can answer when I get a chance.

The next big question is how we do it? I was highly irresponsible and fell asleep the day they were handing out lots in life. This is what was left. If the good outweighs the bad- either I have had some killer times or I am gonna- that's for me to know! We do it because we have to. We don't choose our parents, they choose us. My parents gave me the gifts that will help me get through this, I will do the same for my children. I got to choose my partner and I married my best friend. He knows me sometimes better than I know myself and usually vice versa. We cram in communication between bites of dinner and doing chores. When I am tired, he takes over so I can go to bed at 8 and I get up at 2am so he doesn't have to. When we are both exhausted, we muddle through together. There have been days when he had to work and when the little ones actually fell asleep and I cried so hard I literally passed out in bed. And when I came to, it was all still there except that now I was late to pick up the kids from school. SO that's when our family and friends come in and help pick up the pieces. All I had to do was make a phone call and the kids were taken care of. I don't like it when people have to pick up the pieces for me. I have never been the socialite, or a party girl. There's more to life for me than the superficial so I have a few, close friends. I surround myself with people of quality, not quantity. I have friends who have been through it and seen it all with me. Friends that have earned family status. Situations like this also expedite the extensive screening process I have and acquaintances either fall by the wayside or are promoted to friend status- kinda like a battlefield promotion. And for those of you who know you have earned friend status and are having a hard time coping with all this- I understand. It sucks. Call or email when you can. If all you can do is pray, pray. It helps. I know so many have said they don't know how or what to say or do. I understand. It's OK to do nothing. It's Ok to do something. If it's from the heart, I will understand and appreciate it. If all you can do to help is make your own life easier and better, that's OK. Pain is temporary, love is forever even if it is only the memory of love. So here's some ground rules.

Be yourself. I'm pretty good at understanding human nature and I'm getting better at telling people when they bug me.

If you want to call or email, do it. Believe it or not I can choose to answer my phone or not- I can even turn it off when I need to.

Call First. Even if you just happen to be passing by in front of my house or at the hospital- please do not come by unannounced. We have to be vigilant about Lily's rest and germs.

Be patient. We are prioritizing the best we can. If I don't get back to you right away, I will as soon as I can. I may have forgotten, a reminder is OK- but we are impossibly busy and doing the best we can in the order that is best for us and Lily.

Be flexible. If you aren't sure, ask. We have a calendar, but we are keeping it in pencil.

No Sickies. Sick humor allowed, sick people not. If you or yours have even a sniffle or sneeze, reschedule a visit. Even a cold could put Lily in the hospital. Even if anyone in your house has been sick. We won't be doing big parties this season for that reason. It's not that we have gone into hiding...I've never been a it's being imposed on me.

It's funny how much semantics can bug a person when they are stressed. Sometimes everything anyone says or does will be wrong. I had a tough time getting it all done before Lily "got sick." We want to be "normal" but our "normal" right now is no where near what anyone would consider normal. So treating us like nothing is going on will bug us. On the other hand treating us like we are porcelain dolls will drive us insane too. See the conundrum? Everyone has been amazingly generous and helpful. Phil and I are humbled at the support we have been given. We are truly grateful for it all. We are both very independent and have prided ourselves on being able to get through many tough times without having to ask for help. Asking for help is excruciating, but we are learning. For those who know us so well and are trying to anticipate our needs and help accordingly, thank you so much. Thank you for doing. The prayers, food, gifts, cleaning, all of it- has been an amazing help and lets me focus on the important things right now- and that's my family. It helps me find the time to blog and heal the little stress wounds. Thank you.

The girls' message for the day: When it pours grab the umbrella and dance.

Friday, November 21, 2008

Day 5

So far today has been tough. The icky drugs have kicked in and lily can't keep anything down. She keeps trying to drink, which is good, her tummy just can't handle it. Right now she is sound asleep on my lap. They gave her something to help her feel a little better. Before she crashed she gave Pooh a port and practiced cleaning it and flushing it.

Lily's Home

I know you may find this hard to believe- but after cleaning up the last round of puke, I'm finding it hard to get back to sleep. Based on her writhing around- another one's coming soon.

So Phil brought me breakfast/lunch at the hospital around noon yesterday. I was exhausted. Lily had to fit in doses of Mitotane last night(which is technically 2 nights ago since it is now Friday...) since the suture removal required sedation and then by the time we get settled back in the room we are way off schedule. As I've mentioned before, waking up Lily is a treat. Although after another session yesterday with Julie- Lily actually took 2 doses of medicine completely by herself with minimal puking. I let Phil do the discharge dance with Lily while Bella and I ran to Walmart to get some things for home care and came home. My mom called in a cleaner and the carpets looked really good. I take the laundry from the hospital into the wash room, get it started and am working on getting Lily's space on the couch set up as Bella is crunching rainbow goldfish and flinging them around the kitchen. She is put outside to play like the puppy she is, I clean up the mess- she's back- in need of a pull-up change. I tell her she really needs to put that in the potty. I grab a quick shower and as I get out- I hear Bella running up the stairs- Mommy- I did it! She runs into the room and I bend down as she throws her little arms around my neck, her sweet little arms that smell like poo...WHAT did you do? It's not that I don't know the answer- I just need clues as to where so I can go get it cleaned up- I toss her in the shower- clean off my neck which I know I will be smelling for the rest of the day- whether or not it is gone and head downstairs- carefully to investigate the matter. One little smudge on the freshly cleaned carpet by the kitchen- that means there's an invisible trail....ugh...what looks like an attempt to clean up poo in the kitchen. Smudges on the floor- 25 wipes in the trash can- I grab the bleach and give the entire kitchen floor a good spritz and tackle the spot on the carpet. I ask the source of stinkiness where else there might be poop and with her sweet little voice- she says " I did it! Pooped in the Potty!" and then she does this proud little jig. Off to the bathroom. I won't get into the nitty gritty details- but the event happened in the kitchen and was carried to the potty. I DID tell her she needed to put it in the potty. I think she may have attempted to wash her hands or at least tried to wipe them off on every surface she encountered. This is why bleach is my friend. I spritz the bathroom down and return to the kitchen to mop- and finally get the mess contained when Phil calls. They're on their way. It's 5 ish and I am about to ponder dinner when I get the call back- Lily just puked all over and by the time he could pull over she was asleep. Just come home- she'll be ok. I'm not so sure about Phil though- sitting in a camry with no AC(still 80 degrees and beautiful- not that we get to enjoy it much and definitely not under these circumstances), in rush hour traffic marinating in the eu du chemo. I run her a bath in the kitchen sink- the best place to get her clean without soaking her still-accessed port. A new little Dora figurine(Thanks mom) just arrived in the mail, so I unwrapped it and set it by the sink. I then gather all the materials Phil will need to clean the car. Apparently the stench got to her and she woke up and threw up again. They make it home and she immediately grabs her new Dora friend and I get her cleaned up and show her her spot on the couch. She sucks down cherry Kool-aid and asks for some rainbow goldfish. All I can say is that the next round of vomit was very brightly colored. As Bella sits and crunches goldfish into the counter. What is her deal? I manage to get everyone fed and it's time for Lily to take anti nausea medicine. This is a tab that dissolves on her tongue(Thanks Jaim) and it works great- if only all meds could be as easy. She starts to perk up and is playing with Phillip and Kiera- showing them all her new treasures and beads. She is getting tired. She has significant circles under her eyes and just looks pekid. She asks to go to bed. We have to give one more med. The mitotane, the one that will kill her adrenal cells. We have to crush it up and put it in something- she asks for banila pudding. I am impressed, Julie must have worked wonders this afternoon- Phil hands her the cup and the spoon and she starts eating it. Much better than the previous sessions of me holding her down. Her eyes get big- don't do it! Just swallow- don't think. And out it comes. She literally projectile vomited all over the side of Phil. He throws a towel on the floor- grabs another pill and starts crushing it up. Peanut butter is the vehicle of choice this time and this time she makes it through. I get her tucked in we read 2 new books( thanks Gina and everyone!) , arrange childcare for tomorrow(today) and soak in a hot tub for about 5 minutes before I crash. It's amazing how after a few nights of less than an hour of sleep between wake-ups how refreshed one can feel after 5 hours. Unfortunately it's temporary. I better try to get a few more winks before the day has to start. Today we have the last round of this cycle.....yeah. We go to the hospital for it and should be home this afternoon. Then this weekend we have to start shots at home- THAT is gonna be a barrel of laughs. Literally a 2-3 man job.

Wednesday, November 19, 2008

Day 3

We made it thru the 1st two days of treatment, which if you count hydation and the other IV meds was about 36 hours of IV 'treatment'. This morning lily was sedated so her stitches on her leg could be removed. We were awoken at0600, which isn't terribly early unless your last wake up call was just 2 hours prior. Lily starts the no owie chant. As we are going down the hall we get a call that they are not ready for her and to delay for a half an hour. We move into the playroom and lily is still working herself up. I am feverishly trying to calm her, last night she got so worked up about taking medicine that she ended up throwing her meds right back up. She starts hiccupping. I look for something to catch the inevitable...too late. While one hand is failing to catch puke, the other grabs a toy construction helmet. It'll have to do. I get her taken care of and they are ready for her downstairs. We get the sutures out and we head back upstairs. Lily is fairly punky and we have several doses of meds to catch up on. The problem is that she can't get oral meds down without throwing up. We've exhausted the usual tricks and she's even refusing ice cream. Julie walks into the room and lily declares that she does not want to take medicine forcing Julie to spend the next couple of hours NOT getting her to take medicine. Lily gets about 7 new beads, coloring pages, books and when they take vitals her blood pressure is through the roof. She gets some happy juice(IV of course) in hopes of getting her to take her meds. She is completely goofy, consumes julies potato chips , my chips and when we sneak in meds, she pukes on Julie's hand. And this is what happens every time. There has got to be a better way. Lily is smart and Wiley and keeps the staff here laughing. Like when she was passing the nurses station and she was being complemented on her purple dora robe and matching slippers . Lily grabs each side of the robe and flings it open, no shirt, no PJs... Yep she flashed the entire staff. That's our lily. She's resting now until the next round of meds in an hour. So much more to share , so little energy. Thank you for all the support. Every gift, meal, card, kind word helps. It's gonna be a long year, but we can do this.

Tuesday, November 18, 2008


Lily just spotted a rainbow out our minuscule window. We also just got the good news that the pathology came back and all the margins from the leg tumor were clear which means Dr e got it all. Yea!
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Day 2 chemo

We were admitted Sunday night for Hydration. The 1st port access went good and involved only a little screaming. Lily spent some quality time in the play room until I was too tired and insisted we get some rest. Lily had just fallen asleep before midnight when the nurse came in with meds she just had to take. Lily did not agree. Much screaming ensued. And kicking. And thrashing and flailing. It was ugly. In fairness to lily; everytime she falls asleep here she wakes up with another owie. I finally get her back to sleep. She fortunately sleeps through the next 2 series of vitals. By morning not only is she hydrated , they throw a diuertic into the mix. We were supposed to start at 6, it's already 8 and we have made 85 trips from the potty to the playroom and back. Every time we go by the nurses station, they are talking about the lily show. I think we are all just waiting for Julie to get here to work this out. By noon we are ready to start the cisplatin. We have a meeting with Julie about the midnight waking tantrums. She tells lily she needs a codeword to wake up happy. Lily chooses the word 'cock a doodle doo'. So every time they have to wake her up , they have to say 'cock a doodle doo'. I guess if it does not work, at Least I 'll be entertained. One of the nurses finds a rooster picture in a magazine and posts it in the room. Today 's task. . . Taking yucky meds. so far there's like 4 she has to take orally 3 to 4 times a day. I think her tummy is a bit icky, she hasn't eaten anything this morning and does that cough that makes me grab the bucket. Most of the symptoms will be cumulative. Its hour to hour. I am beginning to think the possible hearing loss is god's way of preserving sanity with the incessant beeping of machines in this joint.

Sunday, November 16, 2008

test blog

As we get ready for chemotherapy, I've configured Jen's Phone to post blogs. Lily and Jen will be going to the hospital tonight so that lily can stock up on fluids through an IV. Here is a picture of Lily and Bella.

Saturday, November 15, 2008

Beads of Courage

Beads of Courage is a program for kids who are coping with a serious illness. Different procedures, clinic visits, hospital stays all have a color bead to represent what each child has gone through. There are one of a kind courage beads for any time a child has to go through something not otherwise assigned, or that was especially difficult for that particular child. Lily got a purple bead last time because she had to get a poke. Blue beads are for clinic visits, yellow for nights in the hospital, silver for surgery, black and white stripes are for pokes, Iv's,etc. She got one for her port, and the green ones are for scans. She got the special heart bead for her stay in the PICU, the punkin for being sick over Halloween, and the Angel bead because her Grandma came to see her from so far away. I have a feeling this week will be a big week for beading.

Friday, November 14, 2008


So Wednesday was a busy day. Lily and I were on the way home from the doctor's and I was in the drive-thru to get her ice cream...I look back to ask her what kind she wants and she is slumped over, drooling all over herself, sound asleep. I order her nuggets for when she wakes up- they'll keep better. We get half way down Fort Weaver when traffic stops. She wakes up and begins screaming. I try to give her the nuggets as a peace offering. The nuggets I got her are NOT ice cream. No, if they were ice cream they would be a melty gooey mess. We make our stops which includes a visit and some play time. We finally get home and as they are scarfing down dinner Lily reminds me- "I get ice cream cuz I was good at the doctors." I'm tired, I've already thrown PJ's on- can we go tomorrow? NO. Oh allright. I grab the cash Great Grandma sent for ice cream- I load them up and off we go. We are halfway there when Lily asks whose birthday it is. Every day she asks whose birthday it is- without fail. I tried making up names- it made her angry. I guess I'm not good at making up names. But Wednesday would have been Uncle Bob's birthday and she was pleased to hear it. Kiera points out that we didn't make a pineapple upside down cake. Every year in honor of my brother Bob's birthday, we make his favorite cake- part of keeping his spirit alive. I point out we are going to get ice cream- uncle Bob would be OK with that. Phillip-in an ever astute way says- 'I bet Uncle Bob already had his Pineapple upside down cake in heaven.' So tonight-better late than never- I gave up on cleaning, ignored the mountain of laundry and we made the pineapple upside down cake. I had to borrow 2 eggs and we didn't have any pineapple- but we made the cake. I put extra cherries on- because really I think that's the best part. A year ago I would have run to the store, gotten eggs and pineapple and been exhausted by the time we even started the cake. Today I was exhausted to begin with- so what if the cake didn't have any fresh pineapple on it? The kids and I kept with tradition- even if it was a little late and the cake was cherrylicious.

Thursday, November 13, 2008

No Owies.

I had been preparing Lily for days for our appointment at the hospital to have her owie checked. I couldn't, in good conscience promise no owies- but I can always promise ice cream. We had just talked about how the doctor would take off her bandage and just look at her leg and that she might want to take some of the "black strings" off. 'I don't want her to cut my leg off.' I promise she will NOT cut your leg off. I also had to promise that her leg would not fall off. She finally was distracted and I went upstairs to shower. As I am finishing getting ready- Lily yells to me that she is going to get dressed. The dressing process in my house is very extensive and I am allowed very little input- with any of the girls. With Kiera, I make sure that all necessary parts are covered, with Bella- the fact that she puts clothes on at all is an accomplishment and Miss Lily is good about never matching anything. Bella took a cue from Lily and also gets dressed- in a blue and purple flowered shirt with a pink and white skirt. Both legs are jammed into the one leg hole of the bloomer part of the skirt causing a bit of a peek a boo effect with the undies- but hey at least she's got something on. Lily has longs pants on and her prized "No Owie" shirt that my cousin made her. It has 'Lily' on the back as well as 3- her favorite number. I ask her if she has pants on to hide her owie and she gives me a smirk. I know we can pull the leg up, and as long as she is comfy- we can go about our business.

I think I may have mentioned before the nightmare of parking at Tripler. Yesterday I knew I would have to go to both sides of the hospital and it really didn't matter where I parked. Sometimes when one side is overflowing, the other side is fine- it just all depends. I drive by the oceanside lot- it looks pretty packed. I try the parking garage- nothin- all right I'll valet- nope they're full too. Okey dokey- back to oceanside. I "luck" out- a lady is pulling out- 2 rows from the bottom of the mountain. I can no longer say that I have not worked out in months. I am very glad I brought the stoller, I can just see Lily managing to hobble the walker half way up the hill only to roll back down. We finally make it into the surgical clinic and I'm handed the standard packet of papers every yahoo has to fill you have any pain today?...might you be pregnant?....I wonder if I put extreme answers for everything if anyone will notice. I just manage to maneuver the stroller into the corner where the "play area" is- as the nurse calls our name-the cancer kids always get speedy treatment. The nice soldier with the broken leg looks less than amused as he has to hoist the leg back so we can wiggle back by.

Everyone loves Lily's shirt. We meet with Dr. E who would really like to remove some stitches so that the scarring isn't as bad on Lily's leg- but Lily will have no part of it. Considering Lily's immune system will be so compromised- she says leaving the stitches in for another week isn't a big deal- she doesn't want the wound to fall apart during chemo. Nice. No wonder Lily thinks her leg is going to fall off. Meanwhile Lily is doing a fabulous Rainman impression rocking back and forth humming some tune. The decision is made, while Lily is admitted, she'll stop by and give Lily a sedative so she won't freak out about some of the stitches being taken out and we'll repeat the process the following treatment. Lily gets her Dora sticker and we are off to Oncology for the ECHO.

We hang out in the Onc waiting room, coloring until the doctor is ready for us. I realize the markers are smelly markers and point this out to Lily. Big mistake. I now have every color jammed up my nose under the directive "SMELL!" I am feverishly trying to wipe the rainbow of fruit flavors off my nose and hers as Dr. Somethin or other comes in and asks " have we met before, you're very familiar?" Yeah we're regulars, you've seen us around- what gave it away- the blueberry scent emanating from my face? I have also noticed, as we walk down the halls, everyone stops and says hi to Lily. Not just hi- but Hi Lily. I know she's memorable and all- especially back in the fro days- but I'm beginning to worry that she's very seriously ill or something the way everyone is lovin on her. People that I know we have not met are huggin her. We make it to the Ultrsound room and I have to take Lily's shirt off so he can look at her heart...The No Owie shirt...the one with LILY on the back. See what lack of sleep does to a mommy.

Tuesday, November 11, 2008


We had to take Grandma to the airport today. Usually I get an early wake-up call from Miss Bella, but today everyone was still out at 5am-of course. Last night, everyone agreed that they wanted to wake up to take grandma to the airport- but I wasn't sure I wanted to wake them up. One by one they were all awake and ready to go by the time we had to leave. I get them all buckled in and am hopping in the car when Lily starts undoing her seatbelt. We are already 20 minutes behind and if there is any traffic, we are in trouble. I give her a warning- she starts kicking and screaming. She gets a couple more warnings as Grandma tries to get her in the seat and she is not cooperating. I tell her that she puts the seatbelt on or she doesn't go. She refused. So I took her into the house and handed her to a still half asleep Phil. I hope our neighbors weren't planning on sleeping in today....It's pretty tough to maneuver a 40 pound kid who has a big owie on her leg, not to mention a big belly owie that is still less than a month old- kicking and screaming into the house. We finally get on our way. A few minutes later Phil calls to give me the report. When asked if she wants to talk to mommy I hear her scream in the backgound " I do NOT want to talk to MOMMY!" Wow- she really is mad if she won't talk to me! Phil reassures me- "Don't worry she'll be fine" to which I hear another scream " I will NOT BE FINE!" Well allrightythen. And all by 5:45 am... does not bode well for today.

Lily gets around very well. She uses her walker downstairs and crawls or hops upstairs. She tires out pretty easily. She tries to hook her bad leg over the walker and balance. We discourage that. She can also dance with the walker. Funny, but a bit scary. At one point the other day, Kiera went to the park and Lily decided she wanted to go too. I was chatting with a neighbor as she crawled out the door, down the front steps and halfway in front of the house by the time I could get to her. And she had nothing but underwear on. The dress she was wearing apparently held her back...

Due to this and her other activities- the bandage on her leg was getting gross. Plus the swelling has gone down, so it was a little loose. She kept sticking her fingers in it to scratch so I finally decided we had to redress it. I've been hesitant to do it because Dr. E warned us that the scar was going to be ugly. Due to the amount of tissue taken out- some of the subcutaneous layers could not be sewn back together. I knew it was going to be tough. I could see the edge under the dressing- it was not pretty. Big old fashioned stitches- Frankenstein kind. And since I wasn't really sure what the wound looked like, I wanted to be extra careful when taking the old bandages off. Most of the sticky had come off and they peeled right off. It was not pretty. It's a good 6-7 inches long. In my professional opinion, it's healing very well. She is a quick little healer-that's a good sign. I would have taken a picture, but I thought it was best just to get a clean dressing on and go about our business.

The past few days have involved logistical planning. In the past few years, I've gotten used to juggling 4 kids and their activities. My house is usually messy, sometimes out and out dirty and generally chaotic. I can mutitask and get the kids to multiple locations at the same times. But I cannot be in two places at one time. For the next 8-10 months Lily will be hospitalized for a minimum of 3 days every 21 days. Then on days 4 and 5 we have to go back for more IV outpatient treatments. Before, after, and during treatments she will get IV fluids and her vitals will be monitored closely. Days 6-21, I give her oral Mitotane(to kill the adrenal cancer cells) 4 times a day and shots to help boost her bone marrow. Day 22 is Day 1 again and we start over if all her 'counts" are good. If she gets an infection(I am told she will) we go back to the hospital until she is better. If her white blood cell counts drop, we go back. Every cycle we do a hearing test, an ECHO(heart) and lots of bloodwork. We will monitor her hormones and she will have to be on hormone replacement therapy. She won't be allowed to eat fresh fruits and veggies during treatment- the bacteria could make her sick. Even the bacteria that already lives inside her will make her sick. The house will have to be extra clean, we will have to wash our hands constantly. We will have to wear masks at the first signs of sniffles or coughs. This really puts our bout with pin worms to shame. All the while I have 3 other little people who need me too. This is going to be tricky.

Monday, November 10, 2008

Book Fair For Lily! Nov. 15-24

My good friend Gina had a great idea to help get books for Lily to pass the time during chemo. She is putting on a book show and Lily can get free books! Information from Gina is below!

Help support a bookshow to benefit Lily! By buying books (they make great Christmas presents!) for your friends and family, Lily will benefit by receiving free books! For every order over $35, Lily will receive an additional free book valued up to $10.99 (just email the title you'd like to send her to All the benefits and profits from this sale will go directly to give Lily books to help her during her time in the hospital throughout the next year. Usborne Books are fantastic books for children of all ages that make learning and reading fun. They sell more than 1,300 titles online including books, activities and puzzles for children of all ages. The website can be overwhelming, so I would be happy to give suggestions for books for different age groups!

Saturday, November 8, 2008

Latest Diagnosis

So we got word from the official pathology report on Lily's Leg tumor, although I haven't seen it and I tend to mistrust my memory these days unless something's in writing. The good news is that the diagnosis came back as Plexiform Fibrohistiocytic Neoplasm(Tumor). A very rare, mildly malignant tumor of the soft tissue. So I guess technically it is not a sarcoma, but still cancer. But better, I guess if you look carefully at the degrees of malignancy. I've been trying to do some research, but again- it's a very rare tumor that pops up in children's extremities. One paper hinted at a mutation on chromosome 17( same chromosome as p53) that causes this tumor and thus hinting at a link. I wouldn't call it a stretch -given MY professional opinion. When cells go from normal to cancerous, there is a progression and changes that occur during this transition. I am of the opinion that Lily's tumor was in it's infancy and was rearing to become some sort of fibrosarcoma. We'll probably never know and hopefully it won't come back so we won't have to find out. The treatment recommended was re-excision, and we did that.

Information Overload

Lily had a dream last night that she was lost and couldn't find her way home. There were 2 girls that helped her find her way home. Grandma heard a noise and found Lily balancing like a flamingo next to her bed. "I can Balance!" She had already forgotten about the whistle I had given her when she went to bed, despite the fact she blew it 85 times in a half an hour period after receiving it.

Yesterday was meeting after meeting followed by a meeting and then before we could leave, we had to have a meeting. The first meeting was with Dr. E who was checking on Lily and gave her approval for us to go home as soon as we met with physical therapy. The Onc doc came in after breakfast and we went over about 85 pages of information regarding the study Lily will be in, her chemo treatment, and a lot of the technical details of how it's gonna work. We will have another meeting this upcoming week to discuss the technical details of the technical details. During this meeting, Lily was "saved" by miss Julie who has to be one of the most incredible people I have ever met. Phil introduced her before- she is the terminator aka Child Life Specialist. She is part psychologist, part nurse, part playmate, and part drill sargeant. She has this calming ability paired with never ending energy. On the way home last night, Phil asked me-"Is it too soon in our relationship to ask Julie to move in with us?" Julie takes Lily for a walk and to the playroom while we finish learning exactly how awful the next 8-12 months will be. And this is just the technical medical awfulness- we haven't even touched on the emotional awfulness- but apparently there is someone on staff who we will be meeting with that can help us with that. The physical therapist bops in and we move to the playroom to evaluate Lily. The "evaluation" includes and seems to be limited to handing Lily a miniature walker and asking her to use it. Miss Julie steps in and automatically chastises us for giving Lily that choice. She gets a choice- but it's not whether or not to use the walker- it's where to use the walker. Add Physical therapist to Miss Julie's job description. Lily refuses. Much screaming ensues. It is ugly. It is minimized with her pinky swearing to use the walker later. She then retreats to her bed and kicks everyone out of the room, including the wagon. Except me. Yeah me. She goes to the bathroom, and decides she wants the wagon back. 'Ok- you have to walk to get it.' She agrees. From then on out, she likes the independence the walker offers. She uses it to go to the bathroom, to go to the playroom, back to the bathroom, and finally gets tired out. We retreat to the room and are visited by another nice lady bearing gifts and supplying us with support group information and other parent resources. One of the groups is offering us financial aide to help with the "extra costs" of having a child with cancer. Wow, a cancer 'bonus' . Is it doubled for 2 tumors at one time? What about rarity of tumor? Another of the groups put together a bundle of fun stuff for Lily, yet another stocks the treasure chest in the clinic and "procedure room" on the ward. These treasure chests don't have rings and stickers- they have barbie dolls and trucks and games. I deal fine with the technical details of chemotherapy, but gestures of sympathy and kindness reduce me to tears. Phil puts his arm around me and another tantrum ensues over him touching Lily's mommy. I climb into bed with her and we crash.

The nurse wakes us. They need to draw blood. The IV port they have in her hand probably won't work to draw blood, so we will have to stick Lily. So why is the IV still there? Miss Julie will be in soon to help. The next hour and half are devoted to "preparing" Lily for the poke and teaching her to "choose" to throw a fit or hold still. It includes making a special Lily doll that has all Lily's owies, and green eyes like Lily and an IV port. Then Lily gets to stick the doll. I've heard of this process and see it's value since from here on out Lily will get pokes and will get owies. Part of me feels if we would have stuck her 30 minutes ago we'd be done and on our way home. Lily continually breaks out into her no owie chant. We move to the "procedure room" . "But my bracelet says NO OWIES" Miss Julie looks incredulous. "Who on earth told you a silly thing like that?" " My mommy said Lily Mallory No Owies." So mommy had to take it back. Julie explained that mommy wasn't thinking big picture. Some days you do what you gotta do to get through. I'm learning. Another 30 minutes of no owie chant and my holding her while they stick her. It was exhausting. But we made it home, and we all slept through the night. We were up at 0430- but despite the darkness, I think it is technically morning.

Friday, November 7, 2008

Lily's Home

We were supposed to be home this morning, which in hospital time means by close of business.

Lily has some pain, but we are managing it. She will get a kid-sized walker( as opposed to crutches) tomorrow or Monday. She's only allowed to put weight for balancing on her right toe, but she's smart enough to avoid even that.

Chemo is now set to start Monday Nov. 17th and we have another busy week of appointments and tests next week.

I will catch you up on all the details tomorrow when I am a little more rested, maybe!

Thursday, November 6, 2008

The Second Surgery...

Mom (Jen) is at the hospital staying the night with Lily- who is doing great!

The day started off with a 0425 wake-up, which by the way, thanks to my OCD and the triple redundant alarm clock system, we actually made. Lily is extremely bright, and she knew the score as soon as we got her out of bed, "I don't want any owies..." I guess having our bags packed and the car running gave it away. We got to the hospital on time and were in the pre-op waiting area by about 0720. We told her not to worry, she would be asleep, and the owie would be a little less owie-licious this time around. She is an absolute trooper, she went to sleep at about 0730 and was drinking chocolate milk at 1030! and then she had ice cream, candy, jello, corn, some more ice cream and some water in between sips of Dr. Pepper to balance it all out.

The Dr. was able to excise the remaining portions of the 'growth' and created what we hope is a very clean margin. She didn't have to take much muscle at all, but did have to take a little of the achilles tendon which may mean crutches and limited mobility for awhile depending on what the people from physical therapy say. Lily was definitely reluctant to put any weight on it as one would expect, but this was clearly a much better experience than major abdominal surgery. The port that the Dr. installed left some pretty good bruising from her right clavicle down to her chest- Lily officially disapproves of this addition to her body. The access point, although beneath the skin, sticks out about an inch or so.

So, tomorrow we will meet with Lily's oncologist and set up the chemo, sign all of the necessary paperwork and begin the real journey. The first dose should happen next Friday as long as Lily's leg is recovering well enough; it sounds like we'll be on the chemo profile for about a year- More to follow. Additionally, Lily will most likely sleep in her own bed tomorrow night (Friday).
Thank you all for your thoughts and prayers for Lily!

Wednesday, November 5, 2008


Pre-operational...kinda like me at 2-3am as Bella tells me she's gungry. Bella refused to take a nap yesterday and crashed at 6. Being the smart mommy I am, I went to bed at 8 knowing that my wake up call would be 2-3am. The locking myself in my room at 6 pm last night is another story all together. I call it alone time. Sometimes you have to take it hostage.

I have to tell you about scheduling this pre-op appointment. I call general appt, push the required buttons to schedule in the surgical dept...get a very nice lady who cannot make my appointment for 11:15 because we have a radiology appointment at that time. Hmm-oh yeah like 85 steps ago before Lily had cancer we had this appointment to do an ultrasound on her leg because they couldn't squeeze it in with her abdominal U/S and then they squooze. So I have to call radiology to cancel, I call radiology and cancel- call back central appointments- still can't make appointment- she transfers me to Peds(I don't know why???)- and they transfer me to general scheduling who transfers me back to peds and I hang up and call the surgery scheduler back. " Is there an 11:20 or 11:30 that the system will let you book for me?" Mind you I am not a professional scheduler, although I have played one on tv. No 11:20, But 11:30's open- let's do that- and why couldn't we have done that 85 steps ago? All the while I have this nagging feeling we'll show up to the surgery clinic and they will have no record of any appointment or like 85 appointments on file and I will get marked as a no show and never get my gold star parking spot.

We get to the clinic-- ahh you have an 11:30 and a 12:00 appointment. of course. We go to the vitals room and they weigh the Lilster who as Phil pointed out is almost exactly .8 lbs lighter than her last weigh in. Blood pressure, temp, all good. The nurse looks at me and says, now it's your turn. Cute lil nurse say what? "You have a 12 o'clock with the genetic counselor so we have to do your vitals." But seriously- the scale? Haven't I had enough emotional trauma this past month? Do I seriously have to step up on the scale in front of a room full of people? I don't know if I looked like I was going to pass out or what but she asks me to sit down- "it's just a bood pressure and your temperature." In case I forgot to mention..I'm genetically predisposed to eating while under stress...I've been a little stressed lately. So I am sitting there and the blood pressure cuff is so tight I can feel my fingers going numb. Like my blood pressure is going to be normal. "It's low, we should do it again", Ok now I know the darn thing is broken my blood pressure has never been low.

As it turns out, The genetic counselor saw we were going to be in, had an opening and squoozed us(me) in. Would have definitely packed more snacks had I known that, but I have enough for the monkey. A resident comes in and does the "post-op" exam which entails looking at Lily's incisions. He made the mistake of saying the word "cut" In relation to a tiny stitch that was sticking out and Lily immediately pulls her dress down and turns her back on him. Of course I forgot the No Owies bracelet, but i didn't know if they'd have to draw her blood again and I didn't want it to lose it's magic. He leaves and Dr. E comes in, Lily immediately tries to find her happy place and has her head in my lap and is singing a song I do not recognize. She then blurts out that she has to go potty and I'm positive she's gonna make a run for it. She really just had to go potty. The meeting was cut and dry- she's gonna take a big chunk out of Lil's calf. Parts of the Soleus and Plantaris muscles will have to go, but Lily will meet with a physical therapist and she might have to use crutches for a little while. Phil and I both bust out laughing. When they make the movie- Phil's daydream sequence will be Lily in a Tiny Tim sequence saying "God Bless Us Every One". Then it will cut to me making a face and my sequence which is a Godzilla sized Lily swinging the crutches wildly as windows smash and siblings go flying.

The docs have decided to go with the port, which is this funny catheter that sits under the skin. She will be able to swim and be as "normal" as possible when she feel up to it. They agreed that a catheter with external ports in a 3 year old poses some problems- Yeah It's called Bella, she who likes to snatch. What's this cord???Riiiiiip. Blood spurting. No thanks.

After this meeting, the Gene Therapist comes in. She starts taking a basic history and I hand her the preprinted cancer tree I have generated at the recommendation of my personal doc. It really expedites the whole family history taking process. She asks Phil some questions- like he's responsible for 50% of the kids' DNA or something. He automatically is offended because she asks what nationality/race he is. I tried to explain that it is relevant and she doesn't just want to know out of morbid curiosity. He doesn't buy it. We talk about testing me for p 53 and screening and she goes to get the male nurse to draw my blood. I warn him I'm a tough stick, he doesn't buy it. He claims others probably didn't know what they were doing. Okey dokey. Knock yourself out. Lily is concerned that I have to get an owie, but visibly relieved it's not her. She comes over and holds my hand. He sticks me and she gets pale and Phil scoops her up- the nurse is poking around - a little awkward with the husband in the room... Still trying to find the vein, maybe over here, maybe over there, perhaps a little deeper. It doesn't hurt now- but it's gonna bruise like you read about. I finally suggest a tried and true vein on the other arm- "If you can see it, it's no good" he says. He finally concedes and tries the other arm. "That is a good one" Who told ya that? Yeah, we're done. Let's get lunch..........oh no we have to go down to Oncology so they can get a "good" weight and height on Lily to calculate her chemo treatments. Apparently the height and weight we just had done were not "good".

Of Course the scale is in what Lily calls "The owie room"and she immediately begins her no owie chant. We manage to get a "good" height and weight before Lil bolts out into the hall. She doesn't even breach the threshold for a sticker, but merely points to which one she wants. By the time we got home I threw dinner at the kids, I was beat and locked myself in my room. Phil came in to check on me...I'm just tired and sometimes it's better to remove yourself than to be mean to everyone. I ask if he can manage to hold down the fort? He says the fort holds itself....I wish I would have known that- because apparently I've been doing all this work for nothing. See now the need for me to remove myself? Lily comes in a little while later. Daddy said I have to go to bed. You wanna lay with me? Yeah. So we have some quiet time. She recognizes Obama on tv- He's downstairs too! yep, we're gonna be seeing a lot of him. The schools teach about elections and Phillip and Kiera both came home talking about who they were going to vote for.
Kiera is voting for Obama because he looks just like her uncle. Hmm. I was relaying that to a girlfriend who's 5 year old said he was gonna vote for Obama too because there were 2 boys on his team and the other team had a girl. That was too cute not to share!

We start flipping channels- she wants to watch some discovery show about babies, and suddenly it segways to a little girl who has a tumor in her spine. Lily looks at me, I have a tumor. Yes sweetie you do. I have a tumors in my leg and the doctor has to cuts it out. Yep. Is it gonna hurt? Yeah a little, but we can give you medicine that will take the hurt away so you have to tell us when it hurts. Ok. I want you to stay at the sospital with me. I will. One amazing cookie that one.

Monday, November 3, 2008


Contrary to my past experiences, I have been informed by a professional that Lily hears just fine. The exam was hysterical to watch. They have cool gadgets these days so 2 of the tests just require earplugs and the computer does the rest. The actual range of hearing test is another story. The first test involves the audiologist explaining to Lily that when she hears a sound, she needs to clap. She imitates the sound, and claps. Lily looks at her with a goofy expression. As a parent, I feel like I somehow need to translate- like the audiologist wasn't perfectly clear...Lily looks at me with the same goofy look. The audiologist retreats to the booth and we are well into the test when Lily realizes that there is a window through which she can see the Audiologist. We will call her Miss Amy because that is her name. I, on the other hand have been trying to repress giggles as Miss Amy has been making faces trying to get Lily's attention. I am not supposed to talk, but after the 5th chime I tell my little Monkey- YOU are supposed to clap when you hear that! Miss Amy at this point laughs hysterically and is very well natured, so I do believe she is forced to administer this test to 3 year olds fairly often. Lily finally catches on and is clapping on cue- except when there are 2 chimes in close succession- she then feels the need to add a 3rd clap. This prompts a reminder that she is only supposed to clap after she hears the sound. Unfortunately her father exhibits OCD tendencies surrounding the number 3, so I find this even more amusing. After about 5 chimes, she gets bored. If there is more than 5 seconds between chimes, she gets bored. This results in shuffling, coughing, waving and face making. And then there is the time when she completely turns around to say" I love you Mommy" . Aw shucks. It took a lot of restraint not to yell at her when she started losing focus, but Ms. Amy usually reeled her back in. The final test involved earplugs and Lily having to repeat multisyllabic words. Since I could not hear the words- I had to guess. Another potential flaw to the test..but amusing. These words were in different ranges and you could tell if they were quiet or loud based on Lily's response. She would barely whisper and then practically break out in a shout. It reminded me of when Phillip got his Ipod and would randomly yell questions at us because he had the volume too high on his headphones.

The reason for the hearing test is to establish a baseline. The drug cisplatin which will be used during her chemo can cause permanent hearing loss. We will be going in for these same tests a couple days before each treatment to see if the previous treatment has caused any damage. I am guessing if there is any permanent damage- it will be at whatever range I speak in- because that would be my luck. Tomorrow is the pre-op. Hopefully they won't have to type and cross again, but I have a feeling they will, which means another poke. Fortunately today involved no owies. Lily attributes it entirely to her wearing her new "lily no owies" anklet that one of the preschool moms made for her.

The Grandma has Landed...

Yesterday at approximately 3 pm Lily went upstairs, put on a dress and announced " I am ready to go get Grandma Now!" I thought it was adorable but it lost the charm after a half an hour of her chanting " I wanna get my Grandma" Then on the way to the airport she informs me that this is not the way to the airport and I was going the wrong way. Fortunately Grandma called to let us know she had landed and spent the rest of the drive talking with Lily.

On the way home we stopped for dinner and were chatting about this and that and the upcoming surgery. I asked Lily if she wanted to show Grandma the owie on her leg. LEG. Leg. She hikes up her dress, turns sideways and proudly shows off her battle scar. I forgot to mention that On Halloween, one of Phillip's friends stops by- Lily as well as Bella have stripped out of their costumes and are just in underwear. He looks at her tummy scar and says- Cool- I want one! Boys. Told you they dug scars. ( Wonder Woman-Thought I was gonna talk about the pole incident didn't ya?)

Saturday, November 1, 2008

Happy Hauntings.

We were aiming for normal, and last night was that! It started with Phil promising to be home "early" and getting stuck in traffic. Yep- Normal. The burgers I was hoping he would grill, back into the fridge. One of these years we will have something other than frozen pizza for dinner on Halloween, but then again that would be anti-tradition. The kids were literally vibrating from the sugar overdose. Trying to paint an actual kitten's face may have been easier than Kiera's at 6:04 last night as the doorbell kept buzzing. It no longer chimes- I would like to think it is because we are blessed with a plethora of visitors, but realize it is due to the blazing sunshine that overheats our front and the phase the kids went through where they repeatedly pushed the button just to drive me insane.

The day started with the kids eating cheez-its and candy for breakfast as we walked to school for Phillip and Kiera's parade. Lily brought along her punkin of goodies from her parade and I was going to make her share with every child she ran across. Unfortunately, some parents are sticklers for this thing called nutrition and many did not allow their children to indulge. Erma Bombeck's If I had my Life to Live Over comes to's Halloween. If you keep a steady flow of sugar going all day it actually discourages the evening purge that results in puking- trust me on this.

Fortunately that evening, as Dad was trapped by the evil villain Traffic, Uncle Stewey and Wonder Woman flew to the rescue and arrived just in time to save me from disappointingly delaying the monkeys. They were out the door in a flash. Bella who likes No ONE, loves Jackie, I mean Wonder Woman. They made it about 3 blocks and were tuckered out. Then the fight ensued over who got to hand out candy. The winners were the trick or treaters who simultaneously had Phillip, Bella and Lily shoving candy into their bags while Kiera entertained the masses with acrobatics in the front yard. Talk about Family Circus.

Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)