Tuesday, March 31, 2009

Monkeyin Around

Today did not go much more smoothly, but things gradually fell into place. Lily had her scans, and Phil arrived right after she was sedated to wait with me. Then I had an appointment so he was there with her when she woke up. It was a very rough wake up- and I've been there for most of them- they rarely go well. I guess there was much kicking and screaming involved. By the time I got back to the room, Phil and Lily were snuggling and recovering from the experience.

Before the scans, Lily painted and played with some of her favorite friends on the ward. They have reduced her cisplatin dose by half due to the hearing loss, so she will get to come home tomorrow.

Bumpy start

Yesterday was a bumpy day. We went back and forth around the hospital getting ready for chemo . Lily got accessed, we waited for lab results, got upstairs, had to head back down for her echo which turned into an hour and a half wait. Of course by the time it all settled down and chemo started, it was 5. We played in the playroom awhile, but lily was ready for bed by 8. At this point they wanted me to go to admissions and sign the same waivers we sign every time, mind you she had been up on the ward all day... I tried to sleep, but we had the machine from hell that felt compelled to beep every 20 minutes. Lily managed to sleep through the racket and even slept through a morning puke session. Of course she woke up mad because we were moving her and not allowing her to sleep in chemo laced vomit, we're so mean that way. She watched the hospital's 30 minute informational program on breastfeeding, and after a million questions finally let me change the channel. Apparently we are squeezing in check up scans today*said sarcastically as today's treatment won't start til 4 PM. We don't expect to see anything, protocol requires the scans. Right now lily needs some snuggles so I must go!
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Sunday, March 29, 2009

Bouncy, bouncy...

Lily's emotions or her in the bounce house? Up and down, up and down. I was just discussing with my mom how we have the steroids under control and she's doing good. Now I don't know if we need to adjust her dose or add a steroid, hormone, something or if she's dealing with side effects from the hearing loss and that's what's making her bipolar. I'll have them run labs on her hormones this week during treatment, but we won't be able to make changes until next week because they give her such big doses of steroid to combat the chemo side effects.

We had a big 1st birthday celebration to go to yesterday and in the car she was throwing a fit. I was really worried that we were going to experience a major tantrum publicly. As we walk in the door, she spots Magoo, and all is well with Lily. He got her to eat, she made a funny little hat out of the napkin, everything was going smoothly. Until she has to go potty. She wants Magoo to take her- I wish I would have had the camera out for the look of question on his face- it really was above and beyond the call of duty for a young pilot who is sans kids...fortunately aunty Sharon saved the day. It is interesting to see who Lily latches onto and will accept help from. She decided she wanted her face painted and actually held pretty still, for the most part. She wanted to be a snake. Lily always surprises me with her whims. The other kids, I can always guess what they'll want- Lily, well you just never know. She wanted a snake face and a machine gun balloon. She then went around scaring the bejeezus out of everyone. Bella opted for a kitty face, which is appropriate because she pretends to be a cat at home, sometimes for hours. It's a little strange actually.

Lily had a ton of fun, but we paid for it later with the ups and downs. We finally sent her to her room for quiet time where she mangled her nugget on the bed. She now wears a band aid on the top of her cranium which really does complete the pathetic cancer patient ensemble. The resulting photo may be in the top 10 creepiest photos ever category, so I have to share it. From a distance it looks like alien baby without face. If I had photoshop- I could work wonders.....

Friday, March 27, 2009


Lily's hearing test was rather disheartening today. She is has moderate hearing loss in quite a few ranges and severe hearing loss in high pitch sounds. We have to call and get her in for another series of appointments to get hearing aides. She has been dropping at least one range each cycle and they say loss can continue for months after treatment stops. I have noticed subtle changes in her speech patterns and we all have noticed harder times getting her attention and how loud the TV has to be. Hopefully the hearing aides will be able to compensate and this will just be a minor hurdle and she won't experience any of the other long term side effects. I guess one of the biggest worries is that secondary leukemias usually develop within the first year, which is why they will monitor her monthly during this time. One hurdle at a time...this week we are jumping cycle #7. No sense in worrying about the rest til we have to.

Another day in Paradise...

I generally forget how close we live to tropical hideaways. KoOlina is awesome- but it's man made. The ocean of course is real- but the lagoons, rocks, what not- imported. So when my friend called yesterday and said- let's go see Waimea Falls- I was all about it. Of course an hour later as I was trying to wrestle Bella into her carseat( the analogy of stuffing an octopus into a net bag comes to mind- but from what I know octopi fight SILENTLY.....) I was beginning to wonder if an hour in the car to get to our destination was going to be worth it.

It was worth it. Of course you have to buy tickets to take the hike....and the age is 4 and up. Well Lily decided the day after her birthday that 4 was fun, "but I am 3 again now." Everytime someone asks how old she is, she says "I was 4, now I am 3". So I figure this is perfect- she'll be free. So how old are you today Lily? "Today, Today I am 4." Of course you are , Of course you are.

It was a 3/4 mile hilly "hike" - there was a paved path- which I did not expect or I would have brought the kids and stroller years ago. I figured it was a hike. There are tons off offshoot paths and stairways that the kiddos had fun running up and down. A couple of minor scrapes occurred- but nothing ER worthy for a change. It's not that Bella wasn't trying- it kept raining on and off and she kept hopping from slick rock to slick rock. She either has incredible balance, or is very very lucky. There were a couple of heiaus- which are ancient temples. Phillip laughed at Bella because he thought she was mispronouncing the word- I told him to her they just looked like houses and that she wasn't trying to say heiau and she probably thought we all talk funny.

We had a picnic and the kids chased bubbles. I am amazed at their energy. I wish I had just a little of it!

Thursday, March 26, 2009

Water gun Wars and Wrestlemania 5

So as I sat quietly trying to update the blog yesterday, the kids got out waterguns and were having a blast(ha ha) in the back yard. Of course before I realized it, it was 11:30- so I called my friend Tracey and she was at the pool so I packed up the kiddos and met her there. My four somehow expanded to 6....Kiera tends to do that to me- she always ends up with friends who are package deals with their siblings....I look at it that she gets to spend 2x as much time at their house so it all balances out.

Lily kept trying to drown herself. She is convinced that she is a world class swimmer. She would end up over her head, a foot from the wall and just flail for a second before I realize she's in trouble and save her. Sometimes she surfaces with a goofy grin and sometimes there is a hint of terror- usually it is accompanied by a belch that would put most grown men to shame. At one point I tell her to stop trying to drown herself that I am working very hard at keeping her around- Tracey says "JEN!" Of course SHE gets it, but other people are looking at me with disbelief. What- it's true.

Two hours later, a small child pukes in the pool. Great big chunks. Not one of our children- although not because of Lily's lack of trying.....Hence the rule- after eating wait 30 minutes until swimming. After 30 minutes most the chunks will have digested and everyone won't have to clear the pool and call maintenance to shock it. Well, we're all fairly toasty anyhow. Time to go home.

I impose quiet time on the children, mostly so I can lay down. Keeping track of 6 kids at the pool is exhausting. I ply them with popcorn and juice and a movie and sneak to the front room for a minute. I just need the twilight consciousness nap- I hear what's going on and can react if necessary. I hear that Phillip and Kiera have started Wrestlemania 5 in the backyard. I hear giggling and then thud. Here it comes. Kiera's hurt- she's doing the hurt cry- I hear Phillip tell her- don't tell mom. Kiera sneaks upstairs. And this will conclude todays attempt at a nap because the crying woke Bella who is now poking me and telling me that she is "gungry" and that I forgot dinner. I think we may have technically forgotten lunch- but they graze all day anyhow. I look at the clock- 5:30- yeah I made it to dinner time- t minus 2 hours til the little ones go to bed!

Kiera comes to me holding her head. I check it out- meaning I look at her head and do not notice that her brain is falling out. It hurts, she tells me. Are you bleeding? I don't know, she shrugs. Investigate and get back to me. Put some ice on it. She comes back- it stings. Hmm- stinging means broken skin- time for me to investigate. She shows me her hand- it's covered in blood. Oh joy. I set up gauze and water and section her hair into ponytails away from a half inch gash. Its starting to clot, but bleeding pretty good. I clean it up. Hold gauze on it for a minute and it seems to be slowing. I think she'll live. She wants to go show Sophia- sure- be back for dinner.

When Phil gets home I tell him to check her nugget out when he gets a chance. That is Phil and Jen code for - DO we really have to make another trip to the ER? We check it out over dinner. I don't think it needs stitches. But then we notice there's still blood running out of it-oh bugger. Phil makes that face. That face that means - I hate to disagree with you my love but my opinion varies from yours significantly. I do a quick internet search to compare gashes, lacerations, depth and need for stitches. At a minimum she should have some dermabond glue applied to prevent infection- infection on the cranium=bad. Ok I relent. He takes her to the acute care clinic. Less than an hour later- he calls to report they are on their way to get ice cream- her noggin has been glued back shut and she will in fact live. Didn't I say that like 3 hours ago??? This is why I send him- he always gets out of there in less than an hour- I end up sitting there for 3-7. Phillip has been pacing and fretting since they left- he feels responsible. He sighs. What have we learned? No wrestling. More importantly- No wrestling by the bricks. I told her to come tell you. As it turns out he said "go" tell mom and she knew they were busted so she hid in her room for awhile. Crazy kids. Another uneventful night in the Mallory house.

Tuesday, March 24, 2009

Getting poked is a bundle of fun.....or not.

Getting stuck with a needle sucks. Explaining this to young kids is futile. I'm not sure at what age this changes, because I have seen some adults act looney in the lab. Every person has their thing. Poking me doesn't freak me out, put me in a room with an mri machine and it's instant panic. I'm not judging, I'm just saying. After 5 months- it is not any better for Lily. It got better for a little while and then it exploded. My theory now is that it didn't really get better- she was just too sick to put up as big of a fight for awhile. Florence hates to bundle kids. But...when they are kicking and screaming, sometimes it's better to get on with the inevitable than prolong the suffering. I know one thing for sure after today- building up to the poke is WAY worse than the event.

Monday night Phillip declares he does not want to go to the beach with the boys n girls club. I tell him that is problematic because I have to take Lily into clinic, unless he wants to go...sure he tells me. Well- if you go, you have to have your blood drawn. Ok. Hmm, not the response I expected- this was the kid that Phil had to take in and hold for immunizations because he would go nuts. I ask him if he's afraid, he said no- the last time it didn't hurt. allrightythen. Well if Phillip goes, then we can take Bella and get her blood drawn too and he can help with the little ones since he is such a master now. Surely I jest.......and yet....

For those who may not be caught up- I am sadistic and like to have kids poked routinely so they get nice and used to medical procedures... No this is the big p53 mutation testing I've been talking about. So Kiera goes to the beach, and I take the other 3 into clinic. As I am unpacking the stroller- 2 bags, 3 kids there is a car waiting. I wave her off to tell her we're just getting here- and to carry on with trying to park. She is chatting with Lily and pulls off her cap to reveal a similarly bald head. Lily runs up to her and is in awe. Magically a parking space appears right by us and we walk in together. Lily is excited. A chemo buddy. This lady has breast cancer and is positive for BRCA family breast cancer gene. She is on her last treatment. In a 5 minute span we discuss everything from diagnosis to hysterectomies and I know in an instant, this is an impression that will stick with us both forever. It always amazes me how sometimes a complete stranger can make such a big difference and I must pass along that we all have the potential to BE that stranger. Sometimes we try to help and get shot down, but sometimes just a word or two can make someone's day.

I can tell by the look on Florence's face- that by my bringing along Phillip and Bella today, totally did NOT make her day. I feel bad, she always goes out of her way to make it easier on me and I just plopped a puddle of goo on her lap. And in true nightengale fashion, she already is coursing a plan of attack. She calls in reinforcements, get the orders written and starts the trying task of getting the kids taken care of. We start with Lily since her numbing patch has been on the longest. It starts off well and rapidly deteriorates- 2 cleanings of the port site later- she calls in help. In this 2 minute period- Lily is losing her mind. She's kicking and rocking and screaming. By the time Barb and Miss Julie get there- we get booted for some calm down time(asked nicely to take a walk) and they plan how to best handle this. Julie will entertain Bella and Phillip and prepare them for their big pokes and we will bundle Lily and get it done. She tells me I will not be happy with her for this decision. I don't know why everyone assumes I am the one with the problem bundling her. It sucks, I'd like for her to not be held down- but a half an hour of screaming in terror is every bit as psychologically damning- because in that half an hour she thinks she has a choice- when in fact she does not. So we get er done. Breathing does not work for more than 2 breaths, she will not allow herself to be distracted and refuses to consider alternatives- that leaves us with bundling.

As we finish- Phillip comes in with what is abject horror and the verge of a breakdown is glimmering in his eyes. He is holding a cotton ball on one arm and has another patch on the other. Oh mother fudescicle. A nurse I do not know is profusely apologetic and is herself on the verge of tears. She retreats and Phillip explains she tried- one didn't work, the next one she poked around and wiggled and it hurt. Now the pressure is back on Florence. We send him to work with Miss Julie while we just bundle Bella- who is now the true tough champ of the day who fought being bundled but didn't even flinch with the blood draw. Phil and I have often hypothesized that she has a disorder which causes limited physical sensation as she is one of the toughest little cookies we've seen. She does feel pain, but not like the others. She is quite proud of her owie and crawls up into the stroller- that's her sign for pau- lets go home.

Phillip is in Rainman mode. We now have to poke him for the 3rd time and he's not happy. This is pancreas boy who was stuck repeatedly- and had a feeding tube shoved down his throat twice and we won't even discuss the foley catheter- if you don't know what that is- be grateful. I'm out of patience and finally tell him to buck up and toughen up a little. I will probably be counselled about this later....Florence sticks him and he immediately jerks away leaving the vein to practically spurt blood out of his arm. Now he has to be held. Ugh. We again get er done. And now...we have to de-access Lily which is almost as much fun as the accessing part.

Lily's counts are rebounding so we don't have to come back til Monday. Florence will check her counts and then send us up to the ward for chemo. She must love us, otherwise she'd have them do all that on the floor- and that is why she is awesome at what she does. And she always tells ME what a good job I did, and then hands out toys from the treasure chest. Talk about someone who makes a difference.

Monday, March 23, 2009

Just keep counting....

Lily's counts are dropping. She bled last night with her shot, but mostly her attitude tells me. We're back on the cancer coaster of emotions. Up one second, screaming down the other side the next. Of course she's on a carrot kick, and technically she shouldn't eat fresh fruits and vegetables if her counts are low- but she's eating something healthy.....oh the conundrum. Last month was hot dogs- now she won't touch them- all she wants is McDonald's hamburgers- again can't eat out if counts are dropping. Phil made hamburgers the other night, she wouldn't touch it. I need to go to the commissary and get some of those frozen white castle ones, maybe she'll eat those.

Phillip and Kiera are at the Boys n Girls club for their spring break program. They get to go to the Sea Life Park today. This week I take them in to get their blood drawn for p53 testing. I don't want them to live in fear- but I want them to be careful. I'm keeping my fingers crossed, but each kid has a 50/50 chance of inheriting the mutation. Theoretically, statistically speaking- you would expect 1 of the other 3 to have it, but they could all have it or all not. It's like the penny flipping experiment in high school. Each flip is 50/50 chance- but you could end up with 4 tails in a row or 4 craniums or 2 n 2 or 1 n 3. Fun stuff.

Apparently something is broken and I have been enlisted to find the handy manny tool set......then I must clean the bathrooms.

Sunday, March 22, 2009


My house looks like a tornado hit it. My kids are acting like it's ultimate cage fighting III. The weather is glorious and my yard needs help. Procrastinate much?

So, I joined facebook this morning. Apparently it's THE thing to do. Not that I generally like to be found or jump off the bridge when everyone else does- but maybe it will cut down on the repeated urgings of all you addicts who need to boost their friend counts- you know who you are......

We are almost into the home stretch.....it's scary-I'm always waiting for the next big hurdle....not that it has been smooth sailing...it's just been a little more manageable lately- no extra hospitalizations, well if you discount transfusions- I would hate to jinx it by carrying on. Next Monday begins treatment 7/8. We had a discussion in clinic regarding the accessing procedure on the ward. The policy is now that all procedures be done in the treatment room. Generally they do the accessing in Lily's room after admission because they have learned that it's easier than dragging her kicking and screaming into the treatment room- only once or twice have they done it in the treatment room up there. The treatment room freaks her out. I understand that it is a "better" environment for painful procedures- but Lily's initial access was done in the hospital room and the second one, done in the treatment room required 2 pokes- the rest have been in the bed in her room...she is a creature of routine and it stinks that we have to change it for the last 2 admissions. I could argue for the sake of arguing, but I figure we will cross that hurdle when we get there. It may work itself out depending on what time we get there and who is on duty....

Does homeowners insurance cover tornados named Bella? Or cover damages incurred from cage fighting? Is cage fighting to the death....oh blast it I better go........

Saturday, March 21, 2009

The Birthday Song as Recorded by Lily and Bella

Birthday presents

I am sitting on the balcony at Koolina, listening to the wind rustle the palms, its beautiful. I had an incredible day. Phil parted with tradition and allowed me to open my present Thursday night. Lily brought it to me, handed it over and said here's your present. Its a camera! So needless to say I was so surprised to open it and find a camera inside, Phil missed a huge opportunity to play a big joke! We went to clinic and I was given my second gift , lily and Bella singing their renditions of happy birthday which I will post when I get home. My third present was that lily's counts were fine so we got to go to lunch instead of take out and a transfusion! Then Phil dropped me off here and I had a lovely afternoon of trying out my new camera.

Phil joined me for a late dinner by the beach while the kids were entertained by stew and Jackie for a couple hours. I did a few scrapbook pages and got some sleep. Today the monkeys will join me for a swim and then we'll do cake and ice cream! It has been the perfect blend of family time, date night, and alone time. Now if I could just manage that on a daily basis! At least now I have the template!
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Thursday, March 19, 2009


Yesterday I had yet another appointment first thing in the morning and then Lily had a clinic appointment at 1pm. My husband has been amazingly supportive by constantly rearranging his schedule to be here with the kiddos or take Lily into clinic whenever possible. I know it's extra stress on him, and it reminds me how lucky I am to have a partner in all of this. Not only did he rearrange his schedule- he suggested that I go to Target after my appointment and he would meet me there to drop off the girls on his way into work. Now that's my kinda guy!

****As part of being positive for p53 mutation- I am going through a battery of tests. As the Gyn Oncologist told me- I'm a rock star because everyone studies Li-Fraumeni syndrome- but they rarely encounter a case- so they are actually excited to perform every test under the sun on me under the guise of "preventative" medicine. One of the cost benefits of being in the military near an army hospital-no copays. My outlook is that I endure all these screenings initially to get an idea of what we have to keep an eye on down the road. So far other than some benign cysts, calcifications and whatnot- I am tumor free at the moment. I've had ultrasounds, PET/CT scans, MRIs, and appointments in just about every body part specific clinic there is....a few more to go...but so far so good.****

While I am wandering around Target, I get a call from the Dentist's office. Oh bugger- I forgot to move the kids' cleaning until spring break. This is the day before reminder and if I cancel- we'll be charged. Surely they'll understand. Oh double bugger- Lily has an appointment too because 6 months ago we were a normal family(relatively speaking) with an occasional normal appointment. I'm pretty sure that she can't have her teeth cleaned, the risk of infection is too great- but I will check with her doc. After a short explanation and the obligatory apologies and well wishes from the secretary(dental appointment scheduling technician?) she offers to fill Lily's appointment with me since I am waaaaay overdue for a cleaning. I try to back pedal and say I would have Lily and Bella and they couldn't possibly be unsupervised and she actually offers to watch them for me in the office. I just have to bring a movie in, they'll be fine. Famous last words. If a movie was all it took- my house would be clean, I would be showered and I wouldn't forget little things like what day it is or when we have appointments. Oh all right. Thank you.

We make the transfer and I take the girls to clinic. It's always a gamble with Bella. She is good about sitting quietly while Lily has to get pokes- but then they pick on each other constantly and fight over who gets to sit where and play with what toy or read which book- you know act like normal siblings. There is a big meeting in the clinic and Miss Florence is flying solo to access Lily. Probably not the best day to have brought Bella...but we'll make due. Lily starts to panic, we talk her through it. She manages to sit on my lap for the procedure. Poor Florence might have permanent hearing loss in her right ear from Lily's screams. I fortunately still have fluid in my ears from a recent cold which is kinda like built in ear plugs. I do finally get the chance to use Phil's joke from one particularly loud evening after giving Lily a shot: " I knew there would be hearing loss involved in this treatment- I just didn't expect it to be MINE!" Bella sat quietly , but I can tell she's still stressed she might be next. She quietly moves to the stroller and I find her minutes later......Lily's counts are starting to drop. Her hemoglobin is 7.7, they transfuse at 7. They want to type and cross for Friday and we'll leave Lily accessed so she doesn't have to get poked again. Lily actually climbs up on the treatment chair herself- and sits for the blood draw. She's up to her usual antics and starts gnawing on the ID bracelet. Last time I broke her out of it as soon as we got home and lost it so we had to repeat the draw- Miss Flo reminds me to keep it on...she made it looser so it won't bother Lil. Got it. I kept trying to get pictures, but in true diva fashion she kept yelling "NO PICTURES!"

Lily gets a trip to the treasure chest and Phil and I hypothesize that trips to the treasure chest are awarded not only for kids' achievements- but for Miss Florence's. Accessing Lily without an extra set of hands was challenging- but she did it! Fortunately-there are no more Barbie's and Lily settles for Cars hotwheels. Phil says she usually tries to pick out presents for the other kids when he's there- but I haven't seen it. So I had a huge warm fuzzy moment after we got home and she gave Phillip the cars because he asked to play with them. That's my monkey!

Dr. K has been on vacation for a week and Lily spent a good portion of clinic time hunting her down. When she is finally out of her meeting, Lily acts totally apathetic towards her. She asks Lily about her birthday and starts telling Lily what she got to do on Lily's Birthday- she was in Kauai and went swimming with turtles and rays and got to take pictures underwater with her new camera. Lily perks up " Daddy got mommy a new camera for her birthday present!" Score! I tell Phil later and he has a heart to heart about squealing with Lily. The next time I walk into the room she promptly asks me where my camera is. I point to the one by the computer- "NO- the one that is your present!" Phil just groans. Gotta love em!

Tuesday, March 17, 2009

A little luck after all....

To distract Lily from the trip to the doctor, we made an impromptu visit to her preschool to deliver some St. Paddy's day necklaces. She was so excited to see her friends and it showed as she practically chucked the green necklaces at them and made a bee line for the play area. After a quick visit- we were off to our appointment.

I found parking- our luck must be picking up. Lily borrowed a toy from the onc clinic- I had to pick up synera patches(numbing for port access) for tomorrow. We check in at the orthopedic clinic. There is no record of her appointment or referral. Of course not- I like to go through this routine for fun. I explain what happened, who I talked to, who they talked to and that really I thought they were being waaaaay overly cautious since she was an oncology patient(for once the oncology patient in question was not dancing about flaunting her lil bald head, but huddled under the desk trying to see how dirty she could get). I can't say if that magically produced the appointment- but we got an escort back to the treatment area. Other than Lily leaping of the table and running down the hall screaming NOOOOOOOOO - I think it went well. Well- it went well because they did NOT have to cast her, because THAT would have been a boatload of fun. Since she has advanced bone age from the tumor hormones, it's hard to tell if it's a break, artifact, what not. But despite that she was screaming through the physical exam- she did use it and it didn't seem to be bothering her. Cheerio- Good day, I said good day sir. Peace and we're out. Come back if it bothers her....perfect...I will. "mom- where's nee nee?" Oh crap. The appointment took all of 15 minutes AND now we'll have to retrace all our steps. Then- in walks Miss Florence who I am personally going to nominate for sainthood- with nee-nee! That probably concludes our string of luck for this year. It was nice while it lasted.

Monday, March 16, 2009

Luck of the Irish???

Instead of a pot of gold at the end of my rainbow tomorrow, we get to make another trip to Tripler. I received a call from Lily's oncologist a little while ago. After the cursory greeting, I immediately ask- what's up? Well the Radiology report of Lily's wrist on Friday was just a preliminary. It showed some swelling around the bone, but no evident fracture. Upon "official" review - it has been diagnosed as a Salter- Harris fracture. This is the same kind of fracture Kiera had on her elbow- a growth plate fracture. Since kids are rapidly growing- they have growth plates on the ends of their bones- Xrays can't really pick up these fractures because the cells are growing and dividing and morphing and playing hide and seek. The radiologist and doc have to evaluate other symptoms in conjunction with evidence of swelling of the soft tissues around the bone. Lily has swelling and tenderness and was kind enough to milk the dramatic on Friday which prompted the doc to be extra concerned.

So I rattle off a bunch of questions about hygiene and skin sensitivity and chemo and practicality of a cast on Lily. Plus, have they emphasized she not be unnecessarily xrayed- lets throw some more radiation at her and see what tumor pops up next. Not a good time to not be able to practice good handwashing- especially on the hand with the thumb that she sucks. Phil suggests maybe there's a bowling glove she could use...I know the point is to immobilize the bones so they can grow normally- but doesn't the chemo mess that up anyhow? Well what it boils down to is that the situation is not ideal, they will look into alternatives, but a cast is probably the best option. Oh bite me. Florence suggests ativan before we come in for casting tomorrow. Yeah- the orthopods haven't met Lily- this oughtta be a riot. Something restrictive on Lily. We just got her to wear clothes in public again....They better have purple. Yep- cool the green beer- I'm gonna need it tomorrow!!

Saturday, March 14, 2009

Happy 4th Birthday Lily!

It was a BIG day! Cancer really throws a new vitality into a birthday. In usual fashion- when it rains, it pours. Literally, Friday night it started pouring and didn't stop until right before Lily's party started. Saturday morning the kids helped decorate while Phil helped clean and gather supplies while I managed to finish the cake. Lily requested a Barbie Ballet Princess cake. We waited until about 10 to call off the pool party and regrouped for a party at the house. Lily's hand was still really bothering her, so that was just as well.

Lily woke up excited to find decorations and presents stacked on the table. She made it through 3 presents before she was overwhelmed and had to take a break. Phillip spent most of Friday night making a special book for Lily and that provided a perfect break to sit and read it. Kiera blew up one of Lily's presents- it was a dragon float- she's not a pyromaniac- that I know of. They spent some time "flying" around the living room. Every 5 minutes Lily asked if she could eat her cake. When this would happen, we would supply her with another present and effectively distract her for another short while.

Finally the guests arrived! Lily's best friend Maggie and her family, Stewart, the Turners, and our neighbors the Thompson's joined us. Lily and Maggie had matching purple dresses- it was adorable. The rain broke and the weather cleared enough that the kids could play in the yard. Phil played Lily's playlist out back and Ikaika and Stewart took turns dancing with the birthday girl. By the time the cake was eaten, Lily was completely pooped, put on her new purple Dora pj's, kissed everyone good night and went off to bed. We celebrated a little more by playing with her toys, and of course cleaning up a little. A crowd favorite was the Yo Gabba Gabba hat... Thanks to everyone who helped make her day so special!

Friday, March 13, 2009

Just keep stirring, just keep stirring......

The girls and I started the day by making Lily's cakes. Since we never know if she will feel like chocolate or vanilla, we did both. Bella was allowed (by Lily) to help. One of the many many reasons my cakes end up looking better than they taste...the kids help mix. Would anyone care for cake with their sprinkles????

We had a late morning treatment for Lil combined with and early afternoon appointment for me....and shabow you have a another funfilled day at Tripler. Traffic was light, there was an open parking space- what was this nonsense about Friday the 13th being unlucky??? Lily decides she would like to walk into the hospital. Instead of walking, she runs. On the asphalt parking lot. In slippers. After 4 days of chemo, with wobbly legs and balance issues. She falls. She is screaming. Phil says Lily usually leaves a big footprint wherever she goes- today she left a handprint. Literally a chunk of her palm is missing. I grab the wipes and start removing debris. She doesn't even notice the scrape on her knee- so it must really hurt. The whole way into clinic she is saying over and over "I sorry I run in the street" and she tells everyone who asks that she "fell in the street" which through sobs sounds a lot like she feels hungry and nurses keep coming in with cookies, twix bars, anything that might help the cancer patient who apparently they think is starving. Nurse Teresa makes a special wrap to cover it, and that pretty much looks like a cast. The doc keeps trying to get her to wiggle her fingers and flex her wrist- she refuses. Everytime they leave the room we try to get her to do it- otherwise we get another free pass to radiology. Man she's stubborn. After treatment is finished, she gets one more chance- she refuses- so we're off to get an xray. Fortunately my appointment is in radiology as well- one less trip around the labyrinth.

Miss Florence told Lily they are going to take a picture of her hand "like this, like this, like this and like this" 4 different angles of the hand. After the 3rd xray they tell Lily, OK that's all we need. Lily says "what about this one?" And holds her flat with her palm up. Nope we're good. SO the whole way back to clinic- they didn't take a picture like this? Why didn't they take a picture like this- to every person she sees. As it turns out- she's not broken and neither am I- at least the 2 parts we looked at today anyways. But we may never truly know as they did not take the picture "like this".

Thursday, March 12, 2009

Lily's Cupcake Party

Despite a full ward- the nurses and child life staff went into overtime decorating the playroom for Lily's Birthday Cupcake Party. There were purple streamers and Chinese Lanterns and a great big sign for Lily. The day was filled with visitors popping in an out of Lily's room to wish her happy birthday. As soon as her chemo was finished, she could not wait for her party, so she decided to bring her pole along with her hydration rather than wait for it to finish. I had gotten her a new cotton purple dress in hopes that she might wear clothes to her party- and she was excited to wear it! Don't I look bootiful? she asked.

The table was filled with purple candies and chocolate cupcakes and princess rings. There was purple frosting and white frosting. Due to a recent bad experience with pink frosting...she stuck with white. She decorated and re-decorated her cupcake 3 times. Each time she finished, she licked the frosting off and looked at daddy with the big green eyes- more frosting, please!

After she had enough frosting, she was off to play. She was taking care of Bella's baby who needed medicine. After awhile she discovered a pile of presents from the nurses and staff- are these for ME? She was like a tornado- only stopping to ask Kiera's expertise on the quickest way to remove a pesky ribbon.....the hand decorated paper ripped to shreds....Presents in hand- Lily was ready for a break. She went back to her room and immediately disrobed her new Jasmine doll. She on the other hand kept her dress on.

Phillip and Kiera got to get out of school early to be there. Phil took Phillip and Bella home after they made their cupcakes and played a while and Kiera stayed with me to help out at the hospital. Since Lily was wiped out, Kiera helped decorate extra cupcakes and take them to the various clinics that Lily regularly visits. She and Lily played games when she was finished and Lily got to come home after hydration. We no more than got on the highway in rush hour traffic and Lily got sick. Kiera was a great help, wiping Lily's mouth so I could drive- even though I know it grossed her out beyond belief! Fortunately then Lily fell asleep- so the rest of the way home was uneventful.

We are really lucky to have a great team who cares so much about Lily and they really go out of their way to make her feel special and loved.

Tuesday, March 10, 2009

Count down to 4!

Since Lily should get to come home tomorrow evening, Julie and the nurses want to help her celebrate her birthday early. So tomorrow they are throwing her a cupcake party. We have debated how to celebrate her big day this Saturday, and have decided to keep it low key since we don't know how she will feel. If she is doing good we are going to take her swimming at a friend's house because she loves swimming- if not- we will do our best to make it a happy day for her and celebrate more when she feels up to it. I am hopeful- she is starting to get the chemo glow as Phil and I call it- the sunken eyes, pale skin-but she's doing pretty good.

****I spent quite some time trying to crop this picture to reduce the amout of nakey...I gave up and finally just left it alone- during that whole time I did not notice that Barbie and Ken(aka Jasmine and Prince Ali) are also in their birthday suits.....Lily got a new Jasmine doll and 5 minutes later was removing her beautiful purple outfit- She doesn't like clothes.

Sunday, March 8, 2009

A day at the beach

Phil's squadron had a family beach day after drill today, so I packed up the kids for a little beach time. I briefed Lily that she could dip her feet in the water, but she couldn't get her button wet in the ocean cuz it was too dirty. So the first thing she does- after she hugs the first black bald guy she sees- who just happened NOT to be daddy- and who seemed very surprised to have a little bald child attached to his leg...was run directly to the beach. We finally extracted her from the sandy region with the help of Uncle Magoo, who Lily decided needed her companionship for the duration of the party. They played football, they sat on the wall and watched the sailboats, shared snacks and had an all around good time. Bella kept telling me she couldn't go in the water, it's too duuurty. Too duuurty. So I explained that Lily couldn't go in because of her button- but she could go in. That was all she needed- she was off to the water. Phillip won a game that involved wiggling a rubber band down your face- I can see the headlines now- 199th Fighter Squadron halts ops due to mass eye casualties involving rubber bands. Fortunately no one was injured and Phillip got a net for his wiggliness and proceeded to spend the afternoon hunting fish. Kiera required a photo shoot, and then could get down to business of digging holes in the sand.

It was a good outing. Lily's pretty wiped out from playing so hard- but it was good timing to get everyone out of the house before the next treatment.

A cold Sunday...

Yep, I knew it was coming. I have a cold. Let's add to the reasons I can't sleep, shall we? I knew when I went into the lab for routine bloodwork and the secretary looked like Rudolph and sounded like a frog that I was in for it.

Lily has been a bear the past couple of days. Back to the whiny, emotionial, angry kiddo that we dealt with a couple months ago. I don't know if she's coming down with what I have, which is likely or if her internal clock tells her that it's about time for another cycle to start. She and Bella act like normal siblings and argue just to spite each other. They go from spreading their blankets on the ground, pretending it's snow and flapping their arms and legs maniacally to rolling around like caged animals fighting over the last scrap of food. All normal until Lily gets scratched which could turn into a nasty infection or her button gets tugged which sends her screaming to her corner. The frog has made an appearance in her belly again. So something's up. But this week is cycle 6.....we're getting there.

Saturday, March 7, 2009

Making a Difference

Jackie's Relay got me to thinking the past couple of days. Thanks to all the family and friends who donated- her sailing team raised over $2000 for the American Cancer Society! So many people's lives have been "touched by cancer", well at least that's the phrase you hear, to put it delicately. I like to refer to it as 'metastatically rearranged' by cancer. It makes your heart hurt. It makes you feel helpless. It makes you angry, and sad, and reflect. It makes you appreciate the good times, and the little things like hugs and smiles. It makes the trivial things seem monumental. It motivates you and exhausts you. Cancer also has a cumulative effect. Each time it gets harder. The degree to which it gets more difficult is directly proportional to your relationship to the person. Having a parent with cancer is different than having a child with cancer and having a spouse with cancer is different than having a friend with cancer and having a sibling with cancer is different than having a uncle with cancer and having a coworker with cancer is different than having a grandparent with cancer. Loving someone who has survived cancer is different than loving someone who has died from cancer. It's all difficult in different ways. It's just different.

Even if it is different, if it's the 2nd or 3rd time you have to deal with cancer- it gets harder emotionally. When we started Lily's treatment- that's how they explained recovery from each round of treatment- each time it will take a little longer to bounce back because you start with an already compromised system. Yeah I get that. You gotta deal with old stuff to move on. Excuse me while I go get cozy in my cocoon.

I remember when my dad was dying, sitting through art class- which my counsellor thought would be a great outlet for me.....and fulfill one of the "necessary" requirements. I was a senior in high school and taking a full load. It felt like I was taking it right up the bum at the time, but now I only reminisce of how much easier it was then. And it was life altering, path redirecting, horrible. A freshman twit, and I use the term confidently as I had to endure hours of her babbling incessantly while I immersed myself in art therapy, sat next to me. I remember one day in particular she was going on and on and I got called into the hall and I don't remember why- it had something to do with a message about dad- nothing serious- maybe mom was going to be late from work because she had to get meds- who knows- I'm really surprised I can remember anything- I go back into the room and apparently there had been talk in my absence that my dad was dying of cancer. My twit looks at me and says- I know exactly how you feel, my grandmother died last year. I wanted to punch her. I wanted to verbally assault her until she was a dribbling puddle of goo. But I didn't , I told her I was sorry for her loss , packed up my stuff and while I was leaving made a mental note to never ever ever tell anyone who was going through something that I knew exactly how they felt. You can have an idea, but not exactly. Losing a grandmother in her 80's is loss. No loss is insignificant. But before my dad died, I had lost my aunt, cousin and brother to cancer. I felt like I had the market in loss. Growing up has taught me a little compassion because when I think of my loss, I now think of my mother's loss. She lost a husband and a child while working full time to support me. I think of my grandmother's loss- she raised 5 children in the 50's after her husband died of cancer. She has seen her siblings, 3 children, and 2 grandchildren claimed by the beast. And they go on. When people make irritating, insensitive comments- I remind myself where they are coming from. It doesn't always help. Accept people for who they are is the advice. Change how you let them affect you because you can't change them. Nice in theory- except when you are maxed out in dealing with treatments and appointments and more appointments and meds and lack of sleep. Then those people are flat out irritating. So I choose not to deal with them. Not the most mature way of dealing- but that's one of the things that I let give.

Phillip came home from school in a really bad mood. Phil had tried to talk to him, I tried to talk to him. He didn't want to talk. I made him promise to come to me or dad when he felt like he could talk about it. Appropriately enough, the supersibs organization( helps siblings deal with having a seriously ill brother or sister) send out monthly care mail and his arrived yesterday. After dinner he found it on his bed- it was a book called "What about Me? When a sibling has cancer" . Phil and I were upstairs going through the bedtime routine and Phillip stops me outside Lily's room. "Is Lily going to die?" We don't know when she will die buddy. Everyone dies and we don't know when. That's why we are doing chemo so she will beat this. We've talked about this. Did something make you worry about that? " Kids at school keep asking me if she's going to die. They say kid cancer is more important than grown up cancer. Why do they say that?" Wow. Well I guess because kids are young and they haven't lived life, so people have a hard time seeing them sick. Grown ups have gotten to see and do a lot of fun things so they don't want kids to miss out on that. All cancer is tough, no matter who has it. "Ok, can I watch tv now?" allrightythen.

Sometimes making a difference is a check to a nonprofit. Sometimes it's a meal to a family in need, or groceries, or just a card or a call. Sometimes it's telling people how you feel so that you feel better, or maybe so someone out there knows they're not alone. Sometimes you don't even know you've done anything to make a difference, but the fact is if it does- then that's the important thing. It's not about doing it for accolades, it's about living through and loving through and sometime just getting through makes all the difference. Well Lily would like to use my soap box now to play with while I go and make her another hotdog, for breakfast.

Thursday, March 5, 2009

Jackie's Relay for Life

I just found out that our Jackie is doing the UH Relay for Life in honor of her mom and Lily. I don't know why I haven't learned to keep tissues by the computer. Thank you Jackie- you are an angel! This is an especially hard month for Jackie, as it marks the 4 year anniversary of her mom's death from Pancreatic Cancer. She has already raised over $1000 for the American Cancer Society.

I am honored to know Jackie and am so grateful that she has been a part of our family during this tough time. I know that being around cancer after living through it can be extraordinarily tough- we cherish all you do for us Jackie! The race is Saturday- so there is still plenty of time to make a donation!


Target in Paradise

I told myself I wouldn't go the first week. It'd be too crowded. Plus- I don't have time to go to Target. But then Tracey called with the Tuesday Target Traffic report- and all systems were go. Phil had offered to take Lily into clinic and my plan was to go to the commissary. He did not think Target was open until the 8th. As most people didn't- that was the advertised opening date- rookies. I could drive 30 minutes to the commissary up north that opens earlier- oooooor I could go to target and putz around and then go to the closer commissary that opens later and is on the way back from Target. Really it's more logical to go to Target. I mean I need a new loofah and I haven't seen them at the commissary. Call it retail therapy.

So I throw Bella in the car and we are off. I even drop off library books along the way (3 are due on the 6th...1 was due on the 2o something- better!). It's a good size Target. They have tons of extra staff on hand- even in the parking lot . I finally rejoin with Tracey and have to bum some space in her cart- they were out by the time I got there- 400 all in use- so much for not busy! It was like Christmas in March. The paradise tax is definitely in effect- everything costs a little bit more. But it was fun to walk around and I found some reasonable storage caddies for our kitchen pharmacy. I get to adopt the cart as Tracey is out the door and Bella is snuggled almost ready for a nap- it's 1130- I need to go to the commissary before she crashes. We head out. Not to much damage to the pocketbook nothing frivolous. Then I get to the car.....and this is what I see.

Mother bleeper. We just had it into the shop 2 days ago. YGTBSM! Seriously? Really. Murphy- you really wanna pull this card right now? Really? The security guard drives up and tells me they noticed it awhile ago and they had already started the report. He went to get the manager. One of the parking attendants comes up to me and explains that he saw the cart hit my car- he tried to stop it but the wind caught it and it was going too fast. Ugh, thanks for trying. I doubt he tried, but you never know- he seems like a nice guy. The regional something something manager with trainee regional something something manager come up to the car. Both have high quality superdeedooper zoom lens cameras- I explain what happened- he says he though I had filled out paperwork and goes to retrieve the guy with the paperwork. They did not take pictures. The guy with the paperwork is a 7 foot Samoan dude who probably could lift my car. He has a little trasformers memo pad and takes down my name and what happened. No number. No address. That's it. I wouldn't be surprised if I looked and saw I bunch of squiggles on the pad. He says they probably won't do anything(I figured) and I needed to call the police. I really don't want to go there. It's not going to amount to anything. I tell him there was a witness and he goes to "formally" interview the witness. All the while I know this is going to cost more than my trip to Target and that I am being punished for going(That Catholic guilt thing again). I call the dealer to get a quote- $300-400. For a light? Outstanding. A cop is driving around and the security guard sends him my way. He fills out a damage report. The ball keeps rolling- really I just want to go home. They aren't going to do anything. He does point out that there are no signs saying they are not resposible for damages- so they should in good faith reimburse the cost, but it's a civil matter. And I might wanna get that fixed asap- it's a citable offense. Yeah great. I would much rather spend that much IN Target. Heck a nice little gift card will suffice.....Bella is screaming she's hungry- it is now 1:30- where did the 2 hours go? We go back inside- I want to make sure they filled out this supposed incident report- 2 managers later- I finally get a competent person to take down information and file a complaint. She offers Bella an icee while we wait. I get her a personal pan pizza. She ate the whole darn thing. Meanwhile I see every neighbor, preschool parent and acquaintance I've ever had flooding in and out of Target. Kinda amusing actually. All in all the employees and managers were really nice about it, it's just standard for my luck these days. The manager comes out with a little cool pix camera and takes 2 pictures. I don't expect much to come out of it- but I can hope can't I? I get home and Phil goes and gets the part and fixes the car. The part was half the cost of the quote and it took him less than a half an hour to fix it. I think he needs to rethink his occupation- I guess we can't beat the health benefits of the military though......

I did overhear an interesting side conversation. A lady asked the manager about why there weren't any sale items. She explained that on the mainland, there was a Target on every corner- they had to offer incentives to get people into that store over others- here they had no competition. Exactly. That's what we've been telling them for years-can someone please pass that along to Olive Garden????And Cracker Barrel- that place would make a KILLING here.

Lily would love Target. Maybe I'll wrap the van in bubble wrap(from walmart- hee hee-cheaper there) and give her the tour.....maybe next week... her counts are getting low- nope- next week is treatment...maybe the week after. We'll get there.

Tuesday, March 3, 2009

Lily's Song

There is a non profit organization called Songs of Love that makes songs for seriously ill children with the hope that the songs help provide an added source of joy, strength, encouragement and healing. Shortly into treatment I sent the foundation information on Lily and today we got her song in the mail. It's catchy and fun- something you would hear on Dora- but one of a kind- It's Lily's song. I'm sure I could eventually figure out how to put it on the blog- but if you are dying to hear it- you can download it for a small donation. All donations go directly towards operating costs for making more songs for sick kids.

Click on the Friends and Family Song download link.

name: Mallory number: 18160

You can also hear some more songs at http://www.youtube.com/songsoflovefdn Viewing the site generates hits which leads to sponsors which helps them make more songs for kids!

Sunday, March 1, 2009

A break from the routine.

Phil has seen it coming. I knew it was coming. It was only a matter of time before I reached my breaking point. Really you can only go so many nights without sleeping before you become a punch drunk paranoid schizophrenic. I sleep. But every little noise, cough, anything wakes me up. It's like when you bring home a newborn all over again, buter again- minus the warm fuzzy I have a new baby feeling. I told Phil I needed a night away. And he made it happen. I got a whole night away. Sleep rocks. I have always loved sleep. Sleep is good. He and the kids tearfully dropped me off at Ko'Olina- a beautiful resort down the road-I really don't know what the grief was for they almost certainly were guaranteed McDonald's or pizza for dinner. We used to come swim and snorkel at the lagoons here and whenever I had a chance I would walk here. That seems like such a long time ago. Now, most days I wouldn't know I lived in Hawaii except that the weather is always nice.

I brought along Lily's Pooh scrapbook and got quite a few pages done. I walked by the lagoons and didn't have to chase anyone, had a dinner without having to get up 25 times, and I slept the whole night through. Then this morning, I sat by the pool until this gorgeous man came walking by. He had the most adorable kids. It almost made me miss my own kids- wait those ARE my kids. And then I was being smothered like they hadn't seen me in weeks not merely 20 hours before. We spent the day splashing in the pool and I enjoyed them all so much more. The only time things got to me was while Phil and Lily were swimming- the pool was pretty much empty and I looked over to a row of people and every single one of them was just watching Lily.
So you put the armor back on, and you get tunnel vision and you spend the rest of the day pretending that you don't see the looks. But then there was a lovely family from Canada, eh whose kids shared their buckets with Lily...and all was well.

Lily Kay Monkey

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