Sunday, May 31, 2009

First Water park Solo mission.















As usual, Kiera spent the weekend with her adoptive family, our neighbors. Yesterday the kids were bouncing around like caged monkeys, so I decided today I would take the other 3 to the waterpark. Phillip's friend Kale came along and was really helpful with Bella. After about an hour, Lily starts to get tired and pretends not to hear me. This escalates to nasty looks and tongue protrusion, which requires me to park her butt on the side and have numerous talks about public behavior. We take a break for lunch and she perks up a bit- but soon gets back into her "tired" behavior. I would have left earlier, but the boys and Bella were having so much fun. As a result, I tiptoed around Lily trying to keep her happy until it was time to go. And this was for fun. Mostly it just makes me miss Phil. The rest of the afternoon was spent dealing with what I will refer to as aftershocks. They will be expected to continue through tomorrow. Phil is convinced it's the mitotane. I don't know yet. I guess we'll see in a month.










While we are at the waterpark- Phil sends me pictures from his adventure today. He must have been homesick- he went to the San Diego Zoo. Didn't have to go all the way to CA to see monkeys wrestling and a tired mama bear.

Saturday, May 30, 2009

Time for a change...

The other layout was too fall-ish....I finally took the time to make it Lily purple!

Do you hear what I hear?






Big day! Lily got her hearing aids. I have already noticed a difference, now it will be a matter of her getting used to how they feel. She wore them for an hour yesterday which required bribery in the form of Dr. Pepper and ice cream. They are amazing lil apparati.






We haven't seen Miss Julie for weeks, so she met up with us right before Lily's appointment. Lily had just fallen outside on the sidewalk and was still carrying on about how her legs weren't working when we spotted Julie. She mentioned a boy who would always spike fevers before he had to have treatment and how Lily seemed to always fall on the way into the hospital. Lily tends to fall everywhere- but the problem is moreso the curb that Lily feels compelled to "balance" on. Needless to say- her balance isn't so hot.






It is also interesting to see the interaction between a child life specialist and other fields that she doesn't usually get called in to help with. Julie is by far one of the most overtasked individuals in the hospital. They finally hired another child life specialist because it is impossible for one person to be everywhere all the time. The peds ward is usually busy and they are always calling on her in clinic, in radiology and the ER. When Lily's audiologist arrives, Julie is in the midst of talking to Lily about her new aids and tries to get Miss Amy involved in the prep. Miss Amy kinda laughs- as she does every session, of all the things Lily goes through- these appointments are minimally invasive and not even uncomfortable. So Julie continues on, and this is one of the reasons she is so good at what she does. It is important to her that kids are prepared and given tools to deal with any situation in the hospital- even if it seems silly to grownups or practitioners.






So Julie gives us big hugs and is off to some appointment we have probably made her late for, and we go into the hearing aid fitting. Lily is on the emotional upswing and now her legs are starting to work and she is talking a mile a minute and asking Miss Amy every question under the sun about this part and that part and what is that lady doing, what is that room for, where is the bathroom....Miss Amy fits the plastic earmold to Lily's ear and files down any parts that might rub. The earmold part is clear with pink and purple glitter inside it. It connects to the hearing aid by a clear tube- the hearing aid itself is pink. When she gets older, she may want it to blend- but for learning purposes right now- it's probably good for it to be visible. While Amy starts to program the aids- Lily plays Silly Lily Bug with her molds. At this point she has regained full function of her legs and wants to check in on what Miss Amy is doing.






The audiology clinic is a series of sound proof rooms, each one connected by a 1 way mirror to the office of the audiologist. Lily hops out of the stroller and gallops to Miss Amy's office. As she hops in- she declares- I farted! And giggles like a mental patient. I remember the days when this would mortify me- now I laugh and offer the socially acceptable apologies. Man what did I feed the child- Miss Amy fortunately has a mini room freshener- "just for these occasions" . Yep that's what working with kids teaches you- you need patience, hand sanitizer and air freshener.






We put Lily's aids in, she hooks her up to the computer and it starts programming. We will wait a couple of weeks for a hearing test, they are set low and that will give her some time to get used to them. We go over the details, operation. I ask all the questions I can think of- think that it seems simple enough, what could possibly go wrong? We leave and by the time we get to the car she is demanding to take them out. She is holding a drippy ice cream cone that was reward for her aggreeing to wear them all the way home. The Dr. Pepper, which was my reward for having to sit in traffic on the way home- now becomes her incentive to continue wearing them. I see how this isn't the best parenting technique and the inconsistency of it- but frankly I'd rather be thirsty than listen to whining the whole way home. The problem was that as she was hopping into the car- she realized that the aids are in her ears. When she rides in the car- she likes to suck her thumb and shove her nee nee in her ear. This presents a problem. In the future we may have to go to 1 aid ops in the car- but I would like to set a precedent here. Precedents are very important when dealing with Lily. Hence the bribery problem.






I had loosened the Dr. Pepper lid for her. Apparently as she was getting into the car- she shook it, dropped it and probably agitated it in many ways. As we are getting to the highway, she has tired of the ice cream cone- which I fortunately had the foresight to leave a baggie in the seat next to Lily, for her to dispose of. She opens- well starts to open the Dr. Pepper- see you all see it coming- I am in the front seat- I see it coming- and there it is- Old Pepperful. I am chanting -put the lid back on- put it back on! She gets it closed and is dripping. She starts howling and then realizes that if she licks herself- it tastes good. That buys me enough time to get a successful merge onto the highway. She then realizes it is wet and cold and starts wiggling out of her dress- all the while trying to suck on the dress. Ick. She tries again 3 times before she can successfully open the beverage. I listen to Lily on auto repeat for 45 minutes- I need to take a bath. I am sticky. I have to take these out(aids) so I can have a bath. I need to take a bath. I am sticky. OK rain Lily- GOT IT.






We stop to pick up dinner and the aids are out of her ears before I even get my seatbelt off. They are making this horrible screeching sound- which I was told they would not do. Lovely. I put them in the case and will deal with it later. Apparently that made them happy- they stopped screaming.






So this morning, the plan was to keep the tv turned down to acceptable decibels for the rest of us, and when she asked to turn it up- present the hearing aids as the only option. 2 tries later- no hearing aids on and she is resorting to tormenting everyone. Just keep swimming. Just keep swimming. I quasi put them in my ear to see if they are working-I think the noise is the high frequency amplification for her- but it's annoying. I realize how little I really understand about this whole process. Ugh. I am going to try turning the volume down - but the problem is that if the volume is too low- she can't hear and they are more like ear plugs so she wants them out. I don't think it's too high because Amy said she purposely undercut it so that it wouldn't be too loud while she was getting used to them. I know Phil is lamenting not being here to play with the new electronic gadgets- and I really am wishing he was here- because all this trial and error and figuring out stuff would actually be fun for him.






It was fun to watch her run around the house when she first put them in this morning and I could tell she was listening to things like the scuffling of her feet and things. But the feeling of them in her ears is going to take some getting used to. We may have to put them in and go for an outing so she can be distracted by new sounds. My goal is to have her wear them for at least an hour and a half today. It may be in smaller chunks, but that's the goal.






They also have a remote. AND the remote uses the same charger as my phone- BONUS. The remote looks like a ghetto ipod nano. So I was playing with it and Lily asks me " Can you put songs on now?" and points to the remote then her ears. I tuned the tv to music on demand- but she only lasted 1 song before she pulled them out. Logged: 5 minutes. 85 more to go.

Friday, May 29, 2009

Beyond Thunderdoom.

We walked over to Lily's friend Maggie's house the other day. 2 of her old buds from preschool are getting ready to move, so we wanted to say goodbye. Lily and Bella took turns riding a bike and I had the stroller as a back-up. I've done this before and gotten burned- pushing two kids on bikes for a half mile is murder on your back. We had a nice visit and as we stepped out the door, it starts to pour. Normally, I would just walk home in the rain- but my friend had a big ol suburban- so we caught a lift. It's probably just as well- Bella ended up with sniffles by the time we got home.

I also noticed Lily had trouble listening(hearing) me while she was riding her bike. A BIG problem safety wise- so I put a call in to the audiologist. Last word was that they would call when the hearing aids came in. That means if I don't call, we may never hear back. I have called a couple of times, but never reached a human. I have very little faith in messages being returned- but I left a message yesterday. Lo and behold, in the afternoon I get a call from the scheduler who would like to schedule an appointment for Lily today at 3 pm. Man I should have left a message weeks ago. Of course there was no knowledge of a message- so we have to chalk it up to one major flippin coincidence....and I'm pretty sure everyone cuts out as early as possible on Fridays- but whatever. The point is we are going to get Lily hearing better.

We had a talk about helping her hear and she keeps telling me she hears fine. Of course when I point out how loud we have to make the tv - she just giggles. I am really excited to see if this helps. I think it might remove a lot of her frustration,and mine. They will probably take some getting used to- and we all know Lily isn't great with change- but it's all gonna work out. And once I again I have to be extremely grateful for our military health coverage- because these puppies are crazy expensive. I started looking online just out of curiousity and wow!

Phil leaves today for his 1st TDY since Lily's diagnosis. I'd have to say my anxiety levels have been pretty high regarding this trip. Usually when he goes- it's tough not having a break, but I get the kids on a good schedule, at night I put them to bed and either do things around the house, scrapbook, read or just take a bath. Previously, we have had some pretty bad luck with kids getting hurt while he's gone. I am trying to be positive, but part of me hopes that if I expect the worst- then Murphy will prove me wrong and terrorize someone else who might be in a better place to deal with his shit- cuz I'm pretty much still over it. I am not exactly sure how long it will take me to recover from the past few months. I know a lot of people never recover. I don't feel impending doom most of the time now.

Tuesday, May 26, 2009

Dog Days of Summer




Talk about a busy day! And we were "done" by 12 noon. We left early to pick up Phillip at Stew's house. He needed some "guy" time and got to have a sleepover there last night. I got the girls dressed and myself showered and dressed and then gave Lily her meds. She promptly projectile vomited it. She was a doll and deflected it so that although I did not get drenched- while she was bathing I had some heavy duty cleanup. I worried about her not getting her hydrocortisone dose- mostly since we had a bunch to do- so I packed it and made it out the door.

Although Bella hinted at it over the weekend- she is officially "over" her fear of Aaron who is home from West Point for a short break. She also warmed right up to our friend Ed and when Stew comes over(without Jackie) she makes herself a fixture on his lap. This means that she periodically will end up with food or drink in her hair- as we have found these guys eat constantly! All is fair in love and eating though because I have caught her dipping her hands in their drinks or licking chips and putting them back and I just giggle to myself. But I digress.

We get to Stew's house and Bella grabs her bag, hops out and immediately tells everyone goodbye. Allright that isn't exactly how it happened. I was finishing up a quick call and I saw the kids file out of the car. So I head into the house- greet the guys- make chit chat- see 3 of the kiddos running around- wait- where's Bella? "I dunno" shrug the boys we didn't see her. Oh crap- I left her in the car. I start running to the car, expecting the neighbors to be standing around in disgust as my lil redhead screams in anger...but nothing. I open the door- she's sitting quietly sucking her thumb, she looks up at me "I wanna come too mama." Ok love, let me help you out of the car. So this is the point that she grabs her bag and hops out. I guess I can't be surprised that she didn't want to hop back in the car to go to the hospital with us. Aaron's report was that they went to the park, she said she was done they went home and she fell right asleep on the couch. Since he was doing me a huge favor by watching her- I was glad she was easy for him. I even forgot to tell him to hide the markers and scissors.

We get to the hospital and find a spot. Phil and I are already lamenting how much we will miss our temporary handicap parking placard- but will not miss the handicap of really needing it. First up is our photo shoot with the volunteer dogs. I was only expecting Indy- but there were 4 of them. It was like an afternoon out with my kids- but furrier. We got right down to business and Phillip and Kiera and I had the job of watching. It was a riot watching 4 people, try to arrange 4 dogs around Lily while she just sat there with this silly grin. Of course I must've hit the dial on my camera at some point because all the pictures are slightly blurry-but I got a great one of her and Indy- which is what I was hoping for. Apparently the photographer got some good shots-At one point I asked him which was easier dogs or kids- he said "neither". Ahhh a still life kinda guy.

One of the things I've noticed is that even if there isn't a lot of background noise- if there's a lot of activity- she can't hear. In a situation like this- she has no idea what we are telling her to do because since we don't have a puppy(other than Bella- and I don't believe in leashing humans even if they do exhibit puppylike behavior most of the time) Lily doesn't know much about dog lingo- hence making the words confusing to her. Note to self- call and check on hearing aids. sheesh.

So we head off to clinic and are greeted with the usual fanfare. Everyone is shocked at how fast her hair is growing back in and how blonde it is. Phil still contends it's not blonde, it's white and it's sticking straight up because of all the stress she has been under the past few months. She was very brave for the port access and since she is on the upswing- and while Lily was going on and on about how she didn't want to take the needle out- Florence drew the blood she needed and immediately pulled the needle out not even giving Lily enough time to yell ouch! And she didn't fuss about it either. Fortunately she wanted to stay and watch a movie because Phillip and Kiera both had apointments with "the feelings doctor". Whenever they have a day off that coincides with a Lily appointment- they take turns meeting with a child psychologist. I figure it just defrays their out of pocket expenses they'll have to shell out later for therapy as adults.



After she talks with them- we talk about how they are doing and what we can work on. The past few sessions have been about death and their worries, as each was very saddened by Elikia's death. They also talk about feeling left out and all the "normal" things that go along with being in our situation. They still are coping very well, which is good to hear. I did chat a bit with her about the kids being positive for the p53 mutation and kinda if we were heading in the right direction. Basically we have decided that we will do preventative screening, nothing invasive at this age- but we are going to treat it like normal screening- because for them- it will be their normal. There is no sense in giving them the nitty gritty details, because they can't understand the overall implications and it will scare them. She agreed whole heartedly. They know we have a family history of cancer and that helps decide which tests we have to do- some people do other tests and some people don't do many at all.



Lily's bloodwork is good and we are cleared off for a whole month. In a couple months it will be every couple of months and then a couple times a year. Right around our next visit- we will be done with mitotane. According to my calculations we are done on the 29th of June- but Dr. K is gonna crunch the numbers to be sure. For those keeping score at home- this is week 28 of treatment. We are done after week 32. Which means I have lots o party planning to do! I'm tempted to start counting down days- but I will wait for the official count before I do that.

Sunday, May 24, 2009

Sunday, Spongy Sunday








Dare I say things have been going Ok? Despite Bella, again getting a hold of the scissors and chopping off a few more of her beautiful strawberry blonde locks(I'm starting a collection to make her a wig) and Bella getting a hold of markers and coloring everywhere(Thank God for magic eraser), and Bella taking all of her clothes out of the closet(they're still on the floor- why bother- she'll just take them down again- and WHY is she still naked?)- We haven't been up to much.




Phil took the 2 littlest monkeys to the waterpark - which is now a wet n wild- so they got to see spongebob! Lily's a fan. If you couldn't tell by the smile. I imagine that Bella was literally attached to Phil while he was trying to take a picture- brave move to bring out the camera phone at the waterpark while holding a wild Bella- but apparently worth the risk as opposed to coming home and me saying- you didn't get a picture????? That's my bud! Well played.




Phillip and Kiera ditched us for their respective friends. I kinda like this age- they can do things for themselves(if given detailed instructions), they only want to be around you sometimes(usually when you are swamped) and they love going out with friends(which gives me this rare thing called "alone time") It's this amazing period of time where no one is asking you for anything and there is no one in your personal space. I keep feeling like I am forgetting something though. Kinda like when I go someplace with less than 4 kids- 1,2,3..where's?..oh yeah he's at a friend's house. The mini stress moments keep me alert and the hair dye companies in business.




Lily goes in Tuesday for routine bloodwork and she gets to have a photo shoot with one of the volunteer dogs for their annual fundraiser calendar. She and her lil bud Adam are good friends with a yellow lab named Indy(short for Indiana Jones). He's a sweet dog with some really fun tricks. He would come visit Lily when she was in the hospital and always cheered us all up!
Adam's mom had us over for some yummy BBQ last night and it was hysterical to watch the lil baldies play while we got a chance to compare chemo notes in a social setting. It really is a crazy bond that brings us together. He is a year and a half and has neuroblastoma which is treated very similarly to Lily's cancer- and incidentally they think his originated on his adrenal gland. So His mom is pretty well read on adrenal cancer, which you don't see every day. He is another amazing little personality with these great big blue eyes. He kept sneaking the girls' food, and Lily finally took to feeding him to control her dessert theft.

Friday, May 22, 2009

Chemo Independence Day Celebration

We have officially started planning :







Lily's Chemo Independence Day Celebration!




Save the Date: July 4, 2009

I feel like I am constantly knocking on wood these days. We have picked a place, put a deposit down and are starting to plan our big celebration! It will be the afternoon of the 4th. It was tough picking a date, Lily doesn't finish mitotane until the end of June and Phil is slated to go TDY the 2nd week in July- so it really only left a couple days to choose from! What better day to celebrate independence from chemo, but Independence DAY!

This is a way for us to get together with our family and friends here who have been so supportive throughout Lily's treatment, to say THANK YOU and to celebrate moving into a new phase of our journey.

Stay tuned for details!



Tuesday, May 19, 2009

Klaus' Surgery

Today our little friend Klaus Heiman is in surgery to remove the Plexiform Histiocytic Tumor from his jaw. Unfortunately ,once the surgeon got in there, he decided it was best to remove part of Klaus' jaw bone. This means a bone graft from his fibula and a pretty extensive recovery. He and his family live in Colorado, but found the best team for the job in New York and will be living there until his recovery.

Please include Klaus and his family in your prayers and thoughts and send positive vibes their way.

Monday, May 18, 2009

Silly Lily Bug and Bella in a Box







Call now and you too can have a Bella in a Box- it's the latest craze. All the cool moms have one. It's part puppy, part monkey, part kitten and very low maintenance when it's sleeping. Move over Sea-Monkeys- here comes Bella in a Box.
































Today, Lily also got one of the coolest books I have ever seen. My friend Leesa, who always seems to find the best gifts, sent it for her. It's called The Silly Lily Bug Book and it's a personalized book with Lily's pictures and all. It even has purple tiger lilies. The creator is Jennifer Hess and she has other books too that can be personalized. I'm always on the look-out for great gift ideas, so I thought I would pass this one along.








sillybugbooks.com

Catharsis



I tended to the yard the other day. Something I have not done since October. Lily and Bella played in the sprinklers while I hacked and cut and removed most of the bushes in our backyard. They were overgrown and I had a lot on my mind. Then I discovered bugs, their fate was sealed. 7 bags of foliage later, I figured I let my emotions get the best of me. Better the plants than my hair. Kiera came home and with a shocked expression declared- The yard is bald! Phil merely said, I didn't realize we had so much fence. I guess bug spray and a little pruning would have sufficed. Oh well, bug spray probably causes cancer. Actually it causes reduced adrenal function. Mitotane is isomerically linked to DDT. It was discovered to reduce adrenal function under initial trials as a pesticide.



Phil helped me tackle the front lawn this weekend, but I think he was merely protecting the shrubbery. Then, having maxed out our productivity inclination for the weekend- we took the girls to the water park. Phillip was at a birthday party so Phil was feeling the abundance of estrogen. It was a good time. Our theory was that it was a public place doused in chlorine- hopefully that would be 'safe'. Yet after about the 85th time of yelling at them to stop drinking the pool water- I realized our logic had been faulty- very faulty. We all hung out for awhile in the wave pool, then I got to chill and hang with the littler ones in the keiki area while Phil and Kiera had some quality time on the big slides. It's always fun to watch them have fun.





We also reinstated game night. We had purged most of our games a few weeks back since they were missing parts and pieces- so when I spotted a self contained clue game at Target- I decided game night was back on. After explaining the premise to Kiera- we started. She did not like to go into the rooms, or guess who dunnit, she just kept moving her piece around. I was wondering if she was really grasping the concept, but was pretty sure I had figured out the mystery when Phil made the accusation: I think Miss Scarlett did it in the Study with the Knife. I guessed Miss Scarlett and Knife- I wasn't sure about the room. He looks at the cards- KIERA! do you have the knife? She looks at her notepad then her cards. Oh yeah I guess I do. I thought Phil was going to explode- he's very competitive and she sucked the victory away from him. Allright round two. Each time Phil asks her specifically if she's sure and tells her to look at her cards to make sure. He is more hesitant this time- I thought it was fairly bold for him to make the accusation this time- but he was sure- I think it was Professor Plum, In the conservatory, with the revolver. Again, he looks at the cards, again I think he may just explode. KIERA! DO YOU HAVE THE CONSERVATORY?!! And with a completely innocent befuddled look- Kiera says - what? as she proceeds to look at her cards. I am laughing hysterically at this point. She totally has the conservatory. I now realize we have to play a third game and if Phil doesn't legitimately win- we will be here all night. He managed to pull it off. And later, while we were debriefing the game- he says "I think she just wanted our attention." Well duh- when was the last time Kiera got the exclusive attention of both of us- it definitely wasn't at the talent show- we could have been trying to land a lunar module and she wouldn't have noticed- but she was as content as could be pretending to play with us. Now if we can convince her how much fun it is to actually PLAY we'll be onto something.

Sunday, May 17, 2009

Gettin our funny back.

We are over the big hump. So unexplicably the past few mornings, Lily has been throwing up- just to keep us on our toes. Maybe to keep us current. Perhaps she feels I didn't clean the couch or carpet thoroughly enough the last time we spilled something. At any rate-it gives us something to ponder- is it the mitotane, is it the swine flu, should we increase her feeds at night- I don't see a tail and she's not oinking. She went one night without any night tube feeding, and that is when the morning tummy expulsions began. So we, figured an empty tummy was an upset tummy and have been trying to find the lowest rate that keeps her tummy happy.

Personality wise- we are starting to see the old Lily. I forgot how funny she is. Just her demeanor, her facial expressions when she's telling you something. Early on in treatment, there was speculation that her personality was directly linked to her hair- that it was her power- when the hair fell out- the spunk left. Now it's coming back. The hair and the spunk. The first few times I saw the spark, it reduced me to tears. Those happy surprise tears that shock the hell outta you. The tears that represent a small piece of a broken heart, finding it's way home. A crack being mended. The other night Phil told her to do something, she snapped to attention and saluted him. Talk about being reduced to a puddle- she hasn't done that in months.

Since our public outings have been limited, they have forgotten how to behave when in such environment. Kiera had an afterschool talent show family night event. We braved it as a family. The experience left me disheartened and mortified. Even just going out for an hour or so still tuckers Lily out, so she wound down by the time the program started. Bella on the other hand just kept winding up. By the time Kiera actually performed- she was literally running around the cafeteria like an escaped monkey. For those who think I exaggerrate- I have it on film. Mostly because she kept running in front of me while I was trying to film Kiera. At the time I was tempted to run , grab her and drag her out of there kicking and screamin- that is what the good parent I used to be would have done. But Kiera had been talking about this talent show for weeks. She had invited neighbors, every night at dinner she showed us a new move. If I got up and wrangled Bella, it would have crushed her. So it was at that point I was committed. I was going to retrain her to behave. It's been really tough that at such a formative time in her development- behaviorally, emotionally, cognitively- her sister had cancer so she processed the beastly way Lily was behaving as normal and acceptable since mom and dad weren't doing anything about it. So now that is going to change.

It began with potty training and will end with acceptable public social behavior. We get to the cafeteria and Bella still has underpants on. I hadn't realized this until she stood in front of our bench and lifted her dress. She had put her waist through a leg opening and essentially mooned our row. I fixed the situation. She refused to sit, or cease and desist with the lifting of the dress. I rummaged through my bag to find a spare pair of pants and found one of Lily's. Then after about 12 trips to the bathroom, it was Kiera's turn to perform with her group. I had to move to the other side of the cafeteria to get a picture- and of course Lily and Bella followed me. Kiera was too cool for school and hardly smiled during the performance, but she later said she had fun there was just a lot of people there and it scared her. Understandable. Fortunately her sister was running around like an escaped monkey- so no one really could see Kiera. Phil and I later had much discussion as to how to fix this situation. We decided that the best course of action was to repeatedly take the little ones out to eat, until they learned to behave in public. Actually he took Friday off and we wanted to go to lunch- but we can write it off as a business expense if we labelled it as a training lunch. And what did we learn? If you supply toddlers with chopsticks and shredded cheese- they will sit still for quite some time. Lily actually did not want to leave as there were a dozen shreds still on her plate. If only I had taken chopsticks and cheese to the talent show....
video video

Thursday, May 14, 2009

My own little Punnett Square.

The past few days, I haven't done much. That is to say I've cleaned messes, washed clothes, and continually fed and watered children. Mostly I'm a referee. Calling the rounds, sending kids to corners. In between all that I've had many requests from the hospital staff for pictures of Lily. I have been trying to put those together.

Yesterday I was quietly working on the computer, both girls were miraculously napping at the same time . It was quiet, too quiet. I was just beginning to contemplate a shower when the phone rang, ugh the dreaded 433-5000- the hospital number. It was Lily's doc, 'Are you home?' - Oh flipping fabulous, "Yes I am home, I am seated, what do you know?" On Tuesday I had asked about the kids' P53 results, she was going to make some calls. "You have 4 kiddos that are p53 positive." Well f$#@! . "We can't buy a break this year can we?" We were hoping for the best, each child had a 50/50 chance. We knew Lily was positive- I just was hoping that 1 or 2 of the others had escaped the worry this flawed gene creates. Statistically speaking- we would even expect 3 of our kids to have this mutation according to dominant inheritance patterns. Like I said, I'm an overachiever. I don't like to do things the easy way. SO now we have to decide how to proceed. Do we join a clinical study and subject the kids to endless tests for the benefit of future generations, do we just do preventative screening, or do we keep our eyes and ears open and do nothing but watch for warning signs. "The good news is that the kids have gotten this far with no problems and are healthy and you are healthy. " Apparently she was completely disregarding my mental health because- let's face it- that currently is in the street.

I hang up. I feel like I should be really upset. I am upset. But not the hysterical- I've given my kids a death sentence upset. I guess I haven't lost all rationality. Knowledge is power, and this gives us the power to choose our path knowing that they in fact have an increased risk. I'm in my 30's. Statistically, I have another good 10 years, hopefully 20. Maybe I'll be putzing around in my 90's like my grandmother, having buried many of my loved ones. I'm not being pessimistic, I'm being realistic. Most Li Fraumeni Syndrome cancers present before 45 and most are nasty. Once you have one cancer, the probablility of more increases exponentially. That is the nature of the mutation. The kids have a good chance that in 20-30 years, they will be facing similar worries for their own kids. I see many hours of discussion in mine and Phil's future.

I send him a text to please not stay later than necessary at work. I know that ensures I will not see him before 830pm. I'll leave our discussion on fate, destiny and control of these factors later. I go about my business and get the kids in bed and am just sitting down to relax when he gets home. We recount the day's events, Phillip was introduced to a new word at school and called a name. Phil has a long talk with him. It was a great talk. I was impressed. Much better than my advice. Phillip goes back to bed. Phil looks to me "too much?" Nope, just right. It's ironic to me that my parents had tons of talks like these with us, and he was usually left to his own devices and in these situations, he always knows the right things to say and all I can come up with is "tell him he's being ignorant and walk away".

Things settle down and I relay the result of the tests. "You know" he says in the most serious tone, they haven't done all the studies, but I'm sure the radar on the jet can cause this. After all Lily is the earliest case in the family, right? Something else had to set it off. It had to be the radar. - And my heart grew 3 sizes that day, thump, thump. -That's not how it works honey. This wasn't you- it's crappy genes. I am always amazed at how well we know each other and so grateful I have him through this. For better and worse. He knows Adrenal cancer happens before 5 or later in life. It's a syndrome cancer. But he knows I'm sitting there blaming myself and will do anything for me, so to do that he wants to share "the blame". That's what true partners do. Like anyone can be blamed for genetics. But we share this responsibility, good and bad, and we will share the credit or the blame- for things that are within our control. I mean hell- at least the kids are all on equal footing right? None of that sibling rivalry nonsense over this- well you got mom's p53 mutation, she always loved you better.

Monday, May 11, 2009

Mudder's Day














It really was a fantabulous day. I got to sleep in, Phil took care of breakfast and then I took Phillip and Kiera for a hike to Maunawili Falls. It was described as an easy, family trail by the stream with lots of lush foliage that ended at a secluded fall. I would say it was an easy trail for a family of mountain goats; Not for the mama who's cumulative exercise in the past few months has included infrequent "brisk" walks. After the second stream crossing, I resigned to the fact that my semi-new shoes were going to be muddy and probably wet by the end of the day and I would just have to wash them and call it good. It was at this point that Phillip slipped off a rock he was leaping to, and soaked his semi-new shoes. I was actually relieved and told him just to walk across the streams because then I wouldn't have to worry about him breaking a bone with his acrobatics. That of course did not deter him in the slightest; It may have actually fueled his daredevilishness to see me squirm. About halfway to the fall, Kiera hit her wall. She started dragging and then finally demanded a break. I wasn't sure she was gonna make it, but after I made her drink a bunch of water and eat some crackers, she summoned her second wind.










The path was muddy, covered in tree roots, which actually saved us multiple times from a slippery trip back down hills. By the 5th time we crossed a stream I was convinced that this was Oahu's secret tourist trap. There was no fall- you just wandered around the mountainside until you keeled over from exhaustion. I was beginning to wonder if we were going to have to make camp for the night- I started conserving rations. I know we've been here before- I told them. Phillip just shook his head- nope- it's different. No I'm pretty sure we've been here. MOM! Just keep going, as the lil mountain goat leapt from rock to rock. After about a million log stairs, which we had not seen before and many people many years my elder were heading back up- I figured I had to do it and we had to almost be there. I could hear the falls. The last bit to the fall was entirely along the stream- which is to say - in the stream. By now I had regained some of my currency in wet, mossy, rock balancing. It wasn't until the way back that I learned we took a wrong turn and there actually was a path along side of that portion. But had we found that path sooner, Kiera would not have soaked her shoes and been able to walk in the stream and Phillip wouldn't have done the splits over a rock that may prevent him from fathering children all the while telling me that he was way better at balancing than me.









Apparently the entire marine corps beat us to the falls- so it was less a tranquil secluded spot and more a roll call, on rocks, with a water fall. The mosquitos were hungry, but we rested up and started to head back. There were some new sights to see along the path we missed earlier. A mini pond that Phillip felt compelled to hop across. Kiera, not willing to be outdone or miss a photo op tried a similar move- only hers was , well, not. She ended up swimming. She found a shallow spot and was giggling hysterically. At least it washed some of the mud off. She then got this look, a look I haven't seen in quite a few years. "You are NOT peeing in the pond!" She erupts in laughter. Oh god, I have raised complete animals.' What? The fish do it.' Great. But the fish don't have to walk back to the car in pee pants. Goober. "You are gonna have to ride home naked." Really? You'd think I just told her she was gonna get ice cream with extra hot fudge.




I had convinced myself we had taken wrong turns all along and we would not have to cross streams on the way back. Not that it mattered- my little drowned rats couldn't be any wetter or muddier. I still had managed to keep my shoes dry. My knee was feeling the strain of downhill maneuvers and I was cursing the added pounds I've put on. Like I don't curse them on a daily basis- just more so when I have to lug them up and down a mountain. But I was wrong- there was plenty o stream crossing yet to be had. It went much quicker as the children were wet and thought it was a game to fall in. It was pretty funny to hear Kiera say the whole time- I think we've been here before. Apparently she thought we were taking a different way back. It always amazes me how much much quicker the way back is than the way up. Maybe it's the unknown that makes it seem longer. Maybe it's the experience. Maybe it's gravity.



We put our shoes in a bucket when we get to the car- Kiera strips down completely. I use the carseat pads for them to sit on. I am thankful for the extra waters Phil packed that I left in the car and the extra snacks. The kids both crash and I can honestly say there is a good 30 minutes of the drive home that I was on autopilot. Since there are organisms in the water, I brief Phillip and Kiera that it is imperative that they do not touch Lily or let her hug them. They are to run to the showers and scrub every inch. The wet clothes go directly in the wash. Phil is in the midst of a major dinner prep and Jackie and Stew are running interference with the toddler types. A steaming bath awaits me, complete with candles and a glass of wine. Have I mentioned lately how much I love the father of my children? Dinner was fabulous, complete with brownies and ice cream. That was the best gift he could have given me, other than our 4 beautiful angels. I think we were all equally exhausted. It was a great adventure and it was so wonderful to spend quality time with Phillip and Kiera, I've really missed spending time with them with all the other stuff going on. Ups and downs, mud and all, I'd have to say I am the luckiest mom ever.

Thursday, May 7, 2009

Purple Heart- how fitting.











People kept asking me if Lily got her purple heart yet. I heard rumors of the famed purple heart. It is a very special Bead of Courage, given on completion of chemo. To me, that is when I'm done giving her the nasty mitotane four times a day, in 6 weeks. To the rest of the group- it's after her inpatient chemo. That works too. It was the worst part, I think, I would hate to jinx any future parts though.








Today was the awards ceremony. Lily went shabby chic, in a fabulously downscale, hip, yet comfy leopard print cloak style dress. She chose not to utilize the matching belt as to not distract from the designer applique featuring her idol and explorer friend Dora, yet this also gave her the freedom to sache confidently with her hands in her pockets. The purple ballet flats said I can walk, I can stroll, I can go with the flow. Seen on the red carpet with her were mom, dad and sister Bella who we will definitely be seeing more of . She has a fresh disregard for conventional style and likes to mix up her ensembles with multiple patterns, colors and directions.








It really was a typical day in clinic. Everyone seemed fairly sedate, which is more than understandable considering the loss that has been sustained this week. Extra hugs abounded, yet Lily's mood deteriorated as the day progressed. Phil went with me because her hemoglobin was 7.2 on Monday, at 7.0 they transfuse- which would be an all day affair. She came in at 7.1. Sigh. She knows to ask the hard hitting questions when they walk in the room with the white sheet of paper " Can I go home?" - yep today we can. Not really wanting to stay for the award of the beads- Lily hops into the stroller and starts doing her "I wanna go home "chant. Not until Florence appears with a box full of purple heart shaped beads, does she stop. "They are all unique- you can pick which ever one you want." They are all amazing and all so different. She finds one that has the face of a puppy- this one! She cradles it like a puppy and holds it up proudly. Miss Julie stops in to get a Lily fix and with her she has a certificate- for bravery.








The psychologist checks in on us. She mentions that when they lose a friend, the other oncology parents and kids have a tough time. Yeah, because the rest of it has been easy, although I see her point. I have felt it. But Lily is really too young to understand. It's more about us. She also mentioned that for awhile, this part may seem more difficult than before, meaning the finishing of treatment. She points out that everyone around you expects your life to return to normal, yet you are still struggling with the emotions, the fears, the cautious optimism and it feels anything but normal. That I can understand. Even I thought that once we didn't have to schedule more treatments, doctor's visits, echos, audiograms... it would feel easier. But when we were going through treatment I had no time, it was an acceptable excuse not to have time to do anything else. But now what? Now I am trying to cook, clean and I am as tired ,if not more so. Like my exhaustion light switch would just be flicked off because a part of her treatment was finished. And now that we don't have to be into clinic every other day, I'm forced to spend my time in the house that is a disaster because for the past 6.5 months I have chosen to let that go. And I am slightly emotionally drained. Just a skosh. I know Phil is feeling it too. He tries so hard to help me out, to lessen my load and more often than not it just makes me feel like a failure. It's not that I can't do it, I just don't want to. I know that's not his intent, and he is working doubly hard to show his appreciation for all the times I did it all myself- so I know he is feeling the exhaustion. I think this is one of the times I will be forced to say it- my mom was right. Weeks, months ago- she said be gentle on yourself. I think I am going to be gentle on myself for awhile- probably AT LEAST until after we go to Disney. So if you stop by my house before then, it will be messy and probably dirty. My kids may or may not have brushed hair, teeth, clean clothes or perfect grades or attitudes. This year I just hope they make it into the next grade.. where we will catch up and have a fresh start. I will do things I want to do, and continue to let some of the other stuff slide. I will try to yell at the kids less, and hug them more- although I really don't think it's possible, plausible or probable. I am going to sit on the lanai more and just appreciate the breeze. I am out of shape and because round is not my favorite shape, and I am going to look for a new one. I am going to start planning our finished with treatment party, because then it will surely get here faster. And I will celebrate the ordinary, the mundane because I have made a difference. I created a Little girl named Lily who is one of the biggest champions I ever met. I will celebrate her brother and sisters, who are also champions for fighting this battle, and just for being them. I will be thankful for each and every one of you who has made our journey easier and funnier or just given us something to bitch about. And although I promise to thank my husband privately- I must say- there have been times I have doubted I could get through this, but I have never doubted that WE would get through it. And when one of my girls comes home declaring at 15 that she has found the love of her life- I will lecture her on the probability of that not being the case and urge her to continue her own growth as an independent woman and all that parental psychobabble we are contractually obliged to spew and in my heart I will worry that he may be the one and hopefully he's a good one too - because sometimes in life you find your soulmate when you are still a child. I was lucky enough to.

Tuesday, May 5, 2009

Stupology.

I'd like to say I'm working nights, and then that would imply sleeping days. As it turns out I'm on a weird 24 hour shift with naps here and there. Phil asked me if I was starting to feel paranoid. I don't know, why's he want to know?

The other stressors in my life have made it very difficult to deal with stupid people, of which lately there seem to be an abundance. And sadly enough I'm too tired to deal with them. For instance, at the post office - the muppet behind the counter who is on transmit only and apparently can't get enough of the sound of his own voice. Look up the definition of metrosexual or effeminate in the dictionary- you'll see him. So perhaps that is why he thinks the bald child in the purple Dora robe is a boy and continues to say- Happy Boy's Day little buddy, Happy Boy's Day. After a third time, the lady behind me in line and I both say "she's a girl". Oh really? I'm sorry, she doesn't have any hair.



Oh well that certainly makes up for his stupidity and ignorance. Of course, she doesn't have any hair, she therefore must be a boy. Because culturally speaking, where we live there is an abundance of boys with short hair. (sarcasm) Apparently boys with short hair are generally only the military brats- which I guess we qualify(again sarcasm)- so maybe he was just trying to relate to the haole kine. Which brings me to my second stupology point-I'm so over racism and the justification of it here. It's publicly allowed by stating- it's not meant in a harmful way. I get that but at some point you pull your head out of the sand and realize that by assigning names to a group of people based on skin color is wrong- whether it is deragotory or not. If someone asks- what color was the man who robbed the store? Haole. OK. Haole means white folk. I was too tired to bring his stupidity to his attention by merely stating the fact that she is in chemo and let's face it- with someone of his intellectual status, such a revelation would mean nothing. The 12 people in line behind me got it and then I had to endure the smiles on our way out- only to see he charged me for 3 books of stamps when I only bought 2 and have to turn around and go right back in.

Then Phillip comes home with yet another notice about needing to pay damages for yet some other book or school something or other. Last week it was the school portrait package. I HATE that they print up an entire package and send it home. Not only is it wasteful. period. dot. Lifetouch apparently shuns the green movement openly. The idea is that stupid folk just pay for the package, the smart folk pick out the sheet they like, pay for that and send the rest back, the illegal folk scan it and send the whole thing back, and the brilliant people realize that the pictures really aren't that good and print copies of a photo from the beach and call it good. So they send the pictures home the week before spring break. And since I am slightly distracted with much much much bigger life issues- I don't notice they are still on the desk until mid spring break. I pick out the sheet I want, because they are flipping entertaining, not because they are good. Both kids have good smiles and are posed nicely, Phillip is sporting a crooked fauxhawk and kiera's hair looks like it's sticking out the side of her head. I pick the page with 4 copies- 1 to torture them with when they get older, 3 for the grandparents. Insert check- give to children- tell children to return to school. SO I get this notice that Phillip's pictures were never turned in. I look in his backpack- they're shoved in there. Ok. We have a long talk about responsibility and I read him the letter. I let him know either he returns the pictures or he shells out the $45 for the package- got it? Yep. Even he doesn't think the cool fauxhawk is worth that. The I notice the back side of the notice has a page's worth of typing. The principal actually printed out the statute about damage to school property. I am assuming the office staff did it, but who knows- maybe she did it herself because lord knows she isn't doing anything physically out and about the school grounds. I'm not a lawyer, but unfortunately I have had experience deciphering legalese in my not distant enough past. I look for the full text online and I am pretty sure this is in reference to school property, book damage, grounds damage, whatnot- not school pictures from a third party. Seriously? How about a notice on a sliver of paper that says- we noticed that your pictures haven't been turned in. They were due such and such date. Because on the picture envelope is a sticker that says pictures or payment is due 10 days from delivery- but no date. I have no flipping recollection of when they were delivered so how can I possible know what 10 days from that is?. If you are going to get all technical on my a** then make sure you print the date on the flippin school property in question. But I let it go. I have bigger tumors to fry. And I am assuming he returned them as they have not yet foreclosed on my house or claimed my car for restitution. You know what they say about assumptions.

So last night I hear he and Phil in discussion over a book on Hawaiian heritage. Apparently we got another notice( same statute printed out) This time from the library at school regarding a book that was damaged so severely we owe $61 for it. Phillip is explaining that Lily did it and Phil is utterly perplexed that he has no knowledge of such a severe offense in our household. I am feeling the same thing. I know we are distracted and many many many things slide under the radar- but I don't remember Lily eating a book and then sending it back to school. Because for $61 damage she must have ripped the cover clean off, digested it and then puked it back up. Phil is stating he wants to see the damage, Phillip needs to get that book.....easy tiger- don't send the boy in- have them call us or we can go in. He writes our numbers on the form. Like we have time for this. I look at Phillip- which book buddy? MOM! You remember, Lily got it wet and when I tried to dry it.....and it comes flooding back- Phillip screaming like a banshee from his room that Lily ripped the cover off of his book. She had drooled on it, or dripped juice, it wasn't even the cover page- it was the white page that connects the cover page to the cover of a book that's been rebound- which is most books in schools these days because they are all older than me. There was a bona fide hole in the page. It was a white page, no typing, no title, no copywrite, nothing. It was the size of a quarter. I did not think the world would end over this. I was tempted to just rip the page out as it had nothing on it, but that would be defacing school property. I told him to just give it back, it would be fine. $61 YGTBSM!

So needless to say Phil and I are both tired, a bit punchy and this is like fuel to our already angry collective fire. He writes a lengthy response on the paper and sends it back to school. This outta be interesting. I agree with Phil- If they are going to charge us $61, that book is ours- they are not gonna rip the page out, use the book and plug $61 into whatever fund is lacking. There are right and wrong ways to go about things. And this is just stupid. And this is another prime example of when you have stuff going on, little, stupid things can send you right on over the edge.

But right now I have to go. Bella picked open a scab and is screaming that she needs to go to the sospital because there is blood. I think a band aid will fix this one up nicely, the emotional issues may require years and years of therapy. And I would love to tend to her emotionl needs, but evidently I need to get a job to pay for or account for all of the school's property this week or I am going to go to jail. Hmmm, 3 squares, mandatory exercise, limited nightly interruptions- maybe that's my window. Everything happens for a reason!

Monday, May 4, 2009

Hope.

The circle of life has changed. To this day when I think of the Circle of Life, I think of Mufasa and Simba. Everyone has their place. Everything happens for a reason. Without one piece in a course of events, each following piece is permanently altered. Sometimes the reason is evident immediately, sometimes it takes years to see how one event places us on a path to where we are. Intertwined in all of this is is karma and fate and determination and a whole lotta hope.

Today Lily still was feeling yucky. I was up all night with her, so Phil made the call to the doc and scheduled her appointment for later this afternoon. The appointment was early enough that I thought one of us might be able to still make an award dinner for Stewart who has been prone to doing some outstanding work at UH. By 3:30 we had to call knock it off because Lily's blood hadn't been drawn and no plan B was in place. Each time I talk to Phil he seems distracted, rightly so- any clinic trip is like a mini circus and you never know when you get to be center ring.

I make it home after running errands with Bella and get the big kids from school. They are happy to watch tv for a bit and I check my mail. I am so happy to see that a friend of a friend, who has become a great source of support during this tough time, just welcomed her 3rd little one into the world this afternoon. Canaan, a strong name for a little guy- a trader, a merchant, land of promise. And I smile to see his round little face and tufts of brown hair.


Lily marches through the door bearing dinner. McDonald's. Again. She is very proud of herself. Phil walks in, he's got the bearer of bad news eyes. He said her counts were low but fine, we didn't have to continue shots. Maybe he just hit my car on the way in the garage.

Elikia passed away this morning.

And my heart breaks. For a little girl who wanted to grow up but cancer wouldn't let her. For her parents who will forever be changed. For her sisters who are too young to understand and will spend the rest of their lives searching for answers. And the thoughts and fears try to surface, because some day it could be you. But today it is not. And for that you are thankful which makes you feel worse. I hide my tears in Phils arms for awhile and retreat to my room to wash my face.

I forgot Phillip was watching a movie up there. He wants to know what's wrong and I tell him. Tears come to his eyes. My sweet boy, who we often criticize for feeling too much, is no more than a reflection of us. He runs over and hugs me.

And I try to think of it with a positive attitude. At least she is not in pain. The standard. For every door that closes, a window opens. Was I not just smiling at the picture of a new little person whose name reminds us of the promised land? And the circle of life continues. That will bring Elikia's family no comfort, for their angel is now just that, hopefully in the arms of the army of angels that have gone before. But for me, it's a a slight comfort and hope. There is balance, yet Elikia's family will not feel that balance for quite some time. It will come. So my thoughts and prayers are with them tonight. I hope that they embrace the life of their beautiful daughter as they mourn her death. I hope that they find the strength and courage to get through the pain and loss and find comfort in all that she was and all that her memory will continue to be. I stop to look up the meaning of her name, and of course it is hope.

Phil sends me to Phillip's room later, he has questions. I prepare myself for the big ones. Death, pain, cancer. "Did Elikia get her wish?" Yes, I tell him- I know he is talking about her Make a wish. "Did she get to ride the big rides?" I don't know- I didn't ask- I just know she got to meet Jasmine- but that wasn't actually her make a wish. Her favorite princess is Jasmine, and the family did get to make a trip to Disneyland- but her wish was to write a song and she did. A local musician put it to music and a local singer , Jasmine Trias sang it. Same name as her favorite princess, pretty cool huh? "Yeah- but did she get to ride the rides?" Yes buddy, she got to ride the rides. "Good, I love you mom. " Is that all? "No, I love you very much." I knew this conversation would end with me crying.

Sunday, May 3, 2009

Bowlin shoes and long nights.

One of the benefits of being a mom is the endless nights spent worrying. Since Lily has this cold and is on the downslope from chemo, I'm keeping a close eye on her. The past 'I don't remember how many nights' I have been awoken to "Muuuuuudddder! I neeeeeed you! " . The little voice is panicked and I rush as fast as my tired and achey body can get down the hall. Sometimes she just requires a pull up change, but it usually ends with me snuggled next to her trying to catch a few more winks before she determines it's time to go downstairs and start our day. This week's startin times have ranged from 3-6 am. It has been interesting. On top of it, it's drill weekend- so Phil is working both days. Gotta just hold out til Monday- he'll be off. Problem is he'll be just as tired as me. bummer.

Yesterday Phillip had a birthday party to go to. A birthday party that, had I been given the invitation before Friday- would have had 3 opportunities to pick up a present. So now I get to look forward to a trip to walmart with 4 kids on the way to the party. Since Lily is sick- we all can't go to the bowling alley for the party. Waaaaaay too many germs. Her fever is up and down so I call Stewart to see if I could impose on his Saturday night plans and ask if he can take Phillip to the party and bring him home. He agrees. But of course Lily falls asleep on the couch while I am showering. Waking Lily, not a good thing. But also I worry that she is getting worse. We make it in and out of Walmart in record time and record volume(whining, not purchases).

I drop Phillip off and the girls and I head home. Phil should be off around the time the party is finishing so I call him to have him coordinate with Stewart. The have just gotten back from flying- I don't think he heard a word I said. So I call him around the time I guess he will be leaving- he is on his way home but goes back to get Phillip. The party family offers to take Phillip to a movie and then bring him home . The biggest problem there is that one of us has to wait up for him. Phil realizes that it will most likely not be me. I go off to bed around 10.

"mmuuuuuuuuuuuuddddddddddddddeeeeeeeeeeeeerrrrrrrrrrrrr! I neeeeeed help!" I look at the clock 2:06. Oh good lord. I change her pull up. She wants me to stay. I feel her- not too warm. My back can't handle another night wedged into the specifications that Lily finds acceptable- I think contortions are a better description. I tell her she's fine, get her some water knowing full well that this will result in my having to change her pull up again before dawn. She is snoring lightly by the time I leave her room.

"Mama! Mama! I'm scared! Muuuuuuuuuuuddddddddddddddeeeeeeeeer!" Ugh. I want to cry. 3 something in the flipping morning. I check on her. She's wet again. She's not feeling well. Her upper sheet is wet- fortunately it was wrapped all around her and the bottom sheets are dry. The full bed change can wait til morning. I get her a new sheet and Phil walks in to see what the problem is. I can't do it. I tell him. I am just too tired. He sends me back to bed and crawls into Bella's bed. Where's Bella?, I ask. She fell asleep on the couch, I left her there. I guess that turns out to be convenient. I try to protest, he has to work tomorrow- just meetings- he sends me on my way. I hear Phil and Lily talking as I gratefully flop into bed. Both of our tanks are running on empty, I hope we get to refuel soon.

Around 6am I hear Phil come in and hop into the shower. He is followed by Bella and Lily who climb in on each side of me. Lily is pale and has circles under her eyes. Bella looks like she crashed on the couch. I ask Phil how she did- they were pretty much up the rest of the morning. He says he think her fever broke. How high was it? "It broke, it's fine. Later I'll need academics on the thermometers, I don't think they were right." OH F%$#- how high was it?! It was high- he knows I am overly cautious with fevers. The first 3 times it went over 100, I called the doc and rushed her into the hospital in the middle of the night, he would have waited it out. 2 of the times it broke- the 3rd she was really sick. 2 nights ago I waited it out. It was awful- hence part of the reason I'm so exhausted. It's the mental torture of deciding is it bad, or is it normal cold stuff? What if it's more? Even a cold if she's neutropenic is bad. He assures me it's just the cold, she's gonna be Ok. So I feel bad he was up most of the night and has to go into work, I feel bad I am so tired. I should have at least waited up for Phillip. What time did Phillip get in?

Funny story. He fell asleep on the couch with Bella. The doorbell rings. He opens it and Phillip is standing there with his friend, Phil looks down- they both still have bowling shoes on. The dad explains that he already made a call and will exchange the shoes tomorrow. I shake my head- we just got Phillip new shoes a week ago. What goof balls.

Saturday, May 2, 2009

Hello mudder




Lily has been referring to us as mudder and fadder lately. Perhaps she is smart enough to realize that I only repond to "mom,mom,mom,mom" every so often but that when she says mudder not only do I respond, but I giggle. Except at 3 am, no giggling then. Lily has been waking up in the middle of the night with a low grade fever most of this week. So of course I am on alert for potential complications. The 'just in case' bag that I unpacked last week is repacked. Thursday night her fever was borderline- 3 months ago I would have called the on call doc and taken her in- but I now know that means a 48 hour pass to the ward just for cultures and evaluation. I can not do cultures- but I can evaluate. I unwrap her blankets, give her a cool cloth and her temp comes down. By morning it's lower again. Hopefully it will stay low through clinic and we won't have to stay.




May day is Lei Day. Kiera and I spent the better part of the week making leis for our hospital friends. Yesterday morning we threw on the finishing touches. I pack for the hospital- which is a diaper bag, medicine pouch, an overnight bag, Lily's take along bag(pooh, baby pooh, nee nee and any other item of the moment), and a bag of 30 leis. So needless to say when a friend called to commisserate about how much she was taking for a weekend getaway- I was out and out bitchy. The whole time I was just keeping my fingers crossed that I wouldn't have to do a Tripler Weekend Getaway- complete with extra comfy bedding( rounding up as many blankets as possible to convert to a pillow since they are out of those) and the select bath collection ( the pre-moistened towelletes that leave you a little disinfected and definitely itchy- they say no rinsing required- but my rash suggests otherwise). I just want to be able to come home. I am hoping, hoping , hoping this trip will be uneventful. I hold the leis like peace offerings to the medical gods for a speedy uncomplicated visit.




I park on the ward side of the hospital. Superstition leads me to believe if I park on the other side, not only will we be admitted, but then I will have to move the car around. We are earlier than our appointment, but I refuse to go up to the ward to deliver the leis yet- if we do so, we will surely be admitted. We stop by Lily's surgeon's office to deliver a lei and head to clinic. Of course it's a weird Friday- half of our favorite people are off or sick. That's Ok- we leave leis for them anyways. It is eerily quiet on the floor. I shuffle the kids into the waiting room- and even though Lily shouldn't play in there with a cold- it's better than them all roaming the floor. Also this should be the last appointment of the day- so theoretically the room will be cleaned and will sit empty until Monday. I see one of Lily's favorite nurses down the hall- he usually works upstairs, and then I see Elikia's sister. Now I am on the other end of the conversation- "how is she doing?" and her dad gives me the look that say "how the @$*! do you think she's doing?" and he has no words and I just want to find her mom and hug her but I know she is now vigilant by Elikia's side. He deflects to asking about Lily and I make sure to mention she has a cold, so we will try to keep her away from Elikia's sisters- as the sisters run in, excited to see Lily. I perch my personal bottle(pump size-not the wimpy little purse size) of sanitizer on the table and notice when Lily coughs- she pumps- then all the other kids pump. And then they all wave their hands in the air waiting for it to dry.




I can feel it in the hall. It's a presence, a weight. I remember that weight all too clearly. And part of me knows that someday it could be me and the thought of it almost takes my breath away. I put that part away. I drag myself back to the now. Phil is there. It's all I can do not to burst into tears when I see him. I find my angry spots- my go-to subject changers- guess what so and so said- yada yada. After all sometimes it's easier being angry than feeling. Phil kinda looks at me like- what's the plan? Oh. I had forgotten why we were here. I feel kinda bad asking for anyone's time when down the hall there is a little girl and her family who really needs it. I am tempted just to pack Lily up and take her home, we can do bloodwork next week. Just then Barb comes around the corner- where we at? I just shrug. She takes charge, and within minutes the plan is in place. While we wait for her bloodwork, we deliver leis to her friends upstairs. Her bloodwork comes back as low, but Ok. They don't even take her temp. I hope I don't now need to bring the gods lei offerings all the time. We get to go home.




Phil takes Kiera to run errands and I take the other 3 home. The little ones pass out and Phillip is drawing in the back so he won't notice and it hits me, the tears pouring out. I let them go and call my mom. After all she is one of the only people who really knows what this is like. She may be thousands of miles away, but she is always right there. She welcomes me to the elite club. She apologizes for not having thrown a party sooner, but my schedule seemed so packed. She tells me that family will support us, best friends will try to understand what you are going through, good friends won't get it but will be there to help, but no one can get it unless they have been there. Just because the inpatient treatment is over, the journey is not. Now we stop to reflect, take a moment to hope, and prepare for the possibility of things we'd rather never think about much less plan. It's like stitch says-it's small and broken, but it's ours. Moms of kids with cancer. We reach out to others when we can. We know we are not alone, but the loneliness engulfs us. We long for normal, but that mutates from day to day. We answer questions with "fine, hanging in there" when all we really want to say is *&^%! ^%$@ ! and *&#@! We can't think of anything we need help with when asked, yet are out of pull ups, the trash is falling out of the can, the weeds have weeds, there are more dishes in the sink than cupboard, there is more laundry on the floor than toys and we are relieved because it removes the dirt from view. And just when we start feeling the weight of it, a little voice pops into the picture.




"Mudder, it's time to do beads." And together we put the beads on her string, the beads we have earned together, but are hers. So maybe I'll tackle the dishes, laundry and trash after we string some beads. Or maybe I'll go back to making offerings to the gods- they apparently don't seem to mind my house being messy.

Lily Kay Monkey

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