Sunday, May 31, 2009
Saturday, May 30, 2009
Friday, May 29, 2009
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
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.
Sunday, May 24, 2009
Friday, May 22, 2009
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
Please include Klaus and his family in your prayers and thoughts and send positive vibes their way.
Monday, May 18, 2009
Sunday, May 17, 2009
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....
Thursday, May 14, 2009
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
Thursday, May 7, 2009
Tuesday, May 5, 2009
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
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
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.