Tuesday, December 30, 2008

Rockin Out even in the Blackout...

Christmas was fun. We got to Rock out with Grandma, Aaron, (home from West Point), Stewart, Jackie and Jackie's clone- I mean sister, Mary Lee. Mary Lee fortunately has waaaaaaaaaaay more rock band experience and taught the boys a few things!...The day after Christmas I had just put dinner on the table when there was an island wide blackout. Not the romantic candlelit dinner I had in mind, but fun none-the-less. 5 minutes into dinner, the baggie of cheese caught fire leading Phil to comment we wouldn't have lasted 5 minutes in the 18th century. True. But that didn't stop me from letting them roast marshmallows in the candles for dessert. As the older ones discovered..they taste best when you let them catch fire then blow it out!
We broke out all the candles and flashlights and fortunately the Ipod dock was charged and ready to provide us with musical entertainment without the rock Band. Actually the kids rocked out to favorites from High school musical and Dora. Lily was lead singer, Phillip provided lighting and Kiera was back up singer/dancer. The boys concluded the evening by watching movies on the portable dvd player. Batteries are good.
Lily had her clinic appointment and hearing test yesterday. Apparently scheduling a hearing appointment requires and act of congress and even when you do manage it- there are few actual records of it. Phil- a newbie to the routine- did not know the only way to get service is to drop names...which is surprisingly effective there. Last time it took me 4 phone calls and about a week to schedule that appointment... And we get to do this every three weeks. Yeah! Cuz I got nothin but time to schedule appointments.... Lily has a cold and there was a significant drop in her right ear hearing, although the audiologist and oncologist both said that this is due to the fluid in her ear and should rectify itself. Me, being the less than trusting sort these days...will worry until the next test. Should probably start trying to schedule that now. And God forbid she have any hearing loss and we get stuck having to be regulars in that clinic too- but I really do think going every 3 weeks counts as pretty flippin regular. She will go in sunday to start hydration and Monday morning she will get her feeding tube placed and then we will start Cycle 3...Yeah? Her counts are all really good. She has become a little pro at swallowing pills. That makes life sooo much easier. The feeding tube will help for the 10-12 days that she has trouble keeping anything down. I'm not looking forward to having 1 more tube to take care of and keep Bella from yanking on when they get into a fight. We are still trying to get her steroids regulated as she goes through her roller coaster of emotions in a 5 minute period. It's like Bipolar disorder meets 'roid rage meets pms in a 3 year old .....aaaaaaaaaaaaaagggggggghhhhhhh. She is still nauseous in the morning and usually throws up dinner- but she overall is feeling a lot better.

Sunday, December 28, 2008

2-25 SBCT 225 BSB

Many Mahalos to the men and women of the 2nd Stryker Brigade Combat Team. Not only are these brave soldiers defending freedom in Iraq this holiday season, away from their friends and family and much too close to danger- they took the time to send Lily a very special hat....Thank you for all you do and sacrifice. I love the smile it got and Lily immediately showed daddy the hat with the instructions "you need to take this to works and show all your friends!".

Thursday, December 25, 2008

Merry Christmas!

What a great Christmas! I got my wish, my family is complete for the holiday. Last night we went for our traditional walk on Christmas Street here in the neighborhood. There is a Santa there every night. We got home and checked Santa's progress with NORAD, as we do every Christmas Eve. Then we had a visit from our Turner Ohana and this morning Kiera coerced Bella into waking the family. I think I heard Santa somewhere around 2 am- so he must have been busy last night! The girls were thrilled with the doll house and both Phils with the Rock Band that Santa delivered. The girls even get in on the Rock Band act...I will publish this band shot for the dedicated readers... I know I will have to take it off when Phil sees it....but you deserve a glimpse into our morning! Later, the uncles and Jackie will be by....so really the competitive spirit in Phil is compelling him to practice until the rest of the band gets here! Thank you for keeping us in your prayers and helping us to have a beautiful Christmas.
Love to all. Mele Kalikimaka!

Wednesday, December 24, 2008

Christmas Eve

Lily's home for Christmas. Her counts were all higher than expected- except potassium and phosphorous. That just requires a supplement.. We received presents from Julie and the Peds ward and were on our way. We are now revelling in our quiet. Have a Very Merry Christmas. Hugs to All.

Oncology is Stupology

A new friend happens to be, well in her BC(before child) identity was a child life specialist. She sent us the new favorite book (for all the kids) called Oncology Stupology. It's a great book and is really relatable for Lily- her biggest complaint is that the mommy is not in enough of the pictures- so I told her the mommy is taking the pictures. I also signed the kids up for the sibling program through Candlelighters(childhood cancer foundation) and they have been getting info and packages in the mail. Phillip enjoys reading the books, Kiera likes the fridge magnet that has all the different feelings on it- today she is happy- I'm pretty sure that's because Santa is coming tonight. We are praying for a Silent Night. We go in to clinic again today and I hope her temp stays below 100. It's hovering at 99. We gave her fluids last night since it has extra potassium in it and she asked for her night tubies. Keeping our fingers crossed.

We went into clinic on Monday and after a 4 hour visit- and some platelets, got to come home. Lily usually watches Barney while we are in there. But on Monday she wanted to watch Dora. She has been asking for days to watch the Dora where she saves the puppy. Phil and I were unsure as to which Dora that was. We kept playing the 3 we have saved on DVR- but none had a puppy. So I have looked through the ONC collection before and no Dora in the treatment room. One of the older kids must have been in because all the Xbox games were spread on the TV cart. There were also 2 DVDs along with the 2 Barneys Lily usually watches. They were Shrek and Goonies. Two family favorites back in the day. My cousin Eric who had a brain tumor LOVED ,Goonies. I hardly even see it on TV anymore and smile to myself thinking of the little guy- figuring it's a little sign her angels are keeping their eyes on her. Lily says she doesn't want to watch Shrek or Barney she wants to wacth DORA! How about Goonies, I ask? She hasn't seen it- it's really not her speed- but you never know. I open it up, and inside is Dora as the Fairytale Princess DVD. Yeah I got chills. SO I giggle and put it on. I've heard a billion Dora episodes, but rarely watch them. So as I sit watching with her I am dumbfounded, it's the one where Dora helps the Gigante Giant find his puppy.

Monday, December 22, 2008

Syrup and cookies

So Lily felt pretty good this past weekend. We still had major ups and downs and she threw up 1-2x a day- but the in between times were a little more manageable. We even saw some smiles and a little dancing. She has been eating and loves chocolate chip cookies these days. Her levels have definitely dropped. No fever yet. This morning has been really tough, everything seems to bother her. I know that means she's not feeling well and something hurts- yesterday it was her legs. Which I hope means the GCSF(shots) are working. She has more bruising and sensitivity again. She is very bipolar and goes from being happy to yanking hair or hitting. She wanted Lily pancakes, but the L was too big and she disowned them, and me. She finally agreed on oatmeal. She usually puts a little syrup in her oatmeal. Today she wanted a little oatmeal in her syrup. At this point -I said that was enough syrup- she disagreed. The syrup was not eaten, I was again disowned. We go into clinic this afternoon.

Friday, December 19, 2008


Soooooooooooo. When you are dealing with cancer, you get to direct your anger in a lot of directions that you might otherwise rationally tolerate or problem solve. Today had the makings of a long day from the go. The kids had their school program and then we had to go to clinic for Lily's bloodwork and dressing change, then Phillip had baseball which was followed by the parent meeting to discuss the coaches expectations of players and parents. So the memo I get is addressed to "Dirtbag" parents. The rumor was that the coach wanted to call the team the Dirtbags. Yeah....um.....no. Well Phil switched his schedule around so that we could go see the program-so he wouldn't be able to make the parent meeting. He did make it to the program with Bella. Lily was refusing to take her meds so I missed out. It happens. I miss our rendezvous at school as well. Phil hangs with the kids and agrees to drop them at the hospital on his way into work. I make my way in to clinic with Lily and she is munchin doritos and requesting doughnuts. Her counts are dropping and she is not neutopenic, yet. We expect her to hit bottom Mondayish. But her neutrophil count went from 6000 to 1100 in 2 days- so we are well on our way there. She will still get the GJ tube, but the parts are on order and we will have to wait for her counts to get back up. We will have to wait to do the next cycle of chemo until she heals from the tube placement which should only be a couple of days.

SOooooooo. I make it to baseball for the meeting. The meeting is delayed because half the parents are not there- remember we are on Hawaii time. Only one or two parents actually show up after that, and I should say moms- not a dad in the bunch. Dads coach, moms organize potluck and fundraisers and transport rugrats. Moms are welcome to "help" on the field though. SO the meeting gets under way. The kids are expected to make it to all practices unless there is a death in the family or a parent is deployed. What about if their sister is in chemo? I ask. I think it's relative as I sit there with said cancer patient on my lap, who is still in nothing but her robe. One of the siblings from last year looked at her when we got there and remarked" she got her hair cut- it looks funny." Well there you have it. Coach says " well does HE have to be there for it?" and there you have THAT. Like I said before- if Phillip didn't LOVE baseball- I wouldn't put up with this. BUUUUUUUUUUUT since we are across the railroad tracks on an ISLAND, we don't have a lot of options. It's Pony or Little League and I hear the problems are worse in little league. Last year Phillip missed half of the season due to his pancreatic trauma- they invited him to play in the post season saying they could really use him and then sat him on the bench for 4 out of 5 innings. I won't get into the politics of it now, let's just say I was not pleased. It wasn't because he was the weakest player- he was still in the top 5. Like I said, politics.

We continue on the meeting- you miss one practice you are out half a game. 2 or more practices- you don't play. Practice 5 days a week, 2 hours. We're preparing them for high school, we have to get them ready. Exsqueeze me bakin pooder? They are 9 and 10 year olds. I would like to get through the year- can we talk high school in say....3 or 4 years? We definitely won't be the Yankees again- coach is tired of the yankees. Well what would you like to call them-you aren't seriously considering Dirtbags? Yes. No, you can't be serious? There's a team...yeah yeah yeah..rags to riches team in Long Beach short on talent but worked hard- nicknamed dirtbags...do you know what it means? NO. Really- it's kinda like a step above the N word. You do not want parents standing on the sidelines yelling "Go Dirtbags". You are not going to put it on the Jerseys...seriously? Yes. It's the name I've chosen, if you don't like it, your son does not have to be on my team. Really? Yes. Seriously? yes. Allright- Phillip get your stuff we're going home.

I realize this has little to do with Lily, yet everything to do with it. Children are precious. They are not dirtbags. Team names should confer strength, unity, teamwork. Not a drugged up incestuous redneck who hasn't bathed since the 80's. So I promise Phillip I will find him a team to play on, because let's face it- I just shot the kid's puppy right in front of him. And he understands- at least that's what I keep telling myself as I hug him every 5 minutes and tell him I am so sorry- but I will not allow him to be treated that way. We talked, he looked up the definition of dirtbag in the dictionary and groans. Is there anything positive or teamworthy or cool in any of the definitions? No. He understands why, but he's 9- he just wants to fit in- in a place where his looks already set him apart from the locals. I guess my dramatic exit produced results- the team name is now "shockers". The kids picked it. Better. But is this the kinda team I want my son on when I can't be there to watch over him? As much as I don't want to break his heart- I can't let THEM break his spirit.

The Story of Nee Nee

Each of my girls has been a thumb sucker from the beginning. They each have also chosen a different fabric type that they like to snuggle. Kiera's was flannel. She had a pink gingham blanket with butterflies and flowers on the back that I gradually cut into smaller pieces. She was forever losing them and when she was about 3, there were two squares left. I tucked one away in her special keepsake box and told her to keep an eye on her blanky, when it was gone, it was gone. Right around 3.5 she stopped sucking her thumb and lost the use for blanky.

Lily likes t-shirt fabric. She was fairly flexible and would use any receiving blanket, she had a pink pooh blanket for awhile and then when we were in Colorado, she fell in love with a pink blanky with a CU Buff on the corner(that's my girl). -When she started talking, she had trouble saying blanky- she always said "nee-nee" and that is what we started calling it. As she got bigger and more mobile, I considered cutting the nee-nee down- but this would require more extensive edging and I was unsure I could pull it off. She was still fairly flexible to substitutions, so I introduced a pink Dora fabric. It took. And THE nee nee was born.

When Bella was born, my friend Drea embroidered her name on a velvety pink blanky with a satin on the other side. This is Bella's favorite. Since Lily called hers nee-nee, Bella started calling her blanky nee-nee as well.

Well, after awhile I decided it was time to cut Lily's nee nee. I had no idea that she favored the edge with the pattern print copyright on it. I merely cut it in half one day. She didn't notice. Another day I put her half in the wash and when she asked for it, supplied the other half- as I had done many times with Kiera. She looks at it, turns it over and around. Where are the letters? I want my nee nee with the letters. Shoot. Well now I knew. So when I cut nee- nee, I left an edge with letters. We gradually got down to 2 nee nees. And then Lily got sick. I needed more nee nees. I found the fabric and didn't realize how well- loved nee nee was. The new fabric has been washed and dried many times and still doesn't pass for the beloved nee nee unless we are really in a bind. In Lily's words " I like my nee nee with the letters and I put it in my nose and my ear and it's dirty." So there you have it. The story of nee nee.

Thursday, December 18, 2008

Nee Nee capades

Yesterday Lily kept throwing up and having the runs, so they wanted us to come back into clinic. They said to give her a dose of hydrocortisone on the way and try to be in within the hour. I was warned that she would probably be admitted if her steroid or electrolyte levels were still too low. Fortunately the extra bag o stuff was still packed so I just had to make a couple of calls and get dressed. Lily swallowed the hydrocortisone pills with virtually no fuss. Hmm. I get Bella packed up and dropped of at the Turner Day Care facility(Carrie's House) and Lily and I were on our way. Half way there she starts singing the ABC's. Apparently the hydrocotisone did the trick. After 30 minutes at the gate traffic jam and 40 minutes trying to find parking- we finally make it to clinic and are rewarded with a signed application for a temporary handicapped permit. Not that those are any more readily available at Tripler- it will give us more options. They had already called the ward to prepare a bed for Lily. We walk into the treatment room, Lily is munching on a doughnut and starts to dance for Dr. K. She promptly dances Lily to the Chief so he could see how lethargic and sick our monkey was. This is far worse than marching a child into the doctor only to be told "it's a virus". Fortunately in the 2.5 hours we were there-they witnessed about 6 mood swings, 4 trips to the potty, a mitotane administration battle and the roller coaster that is Lily. She got an extra bolus of zofran and some electrolytes and since she had perked up- we were allowed to go home. Due to the difficulty administering Mitotane- we are starting a new incentive program for Lily. She got a new bead string and will get a white bead for every dose of Mitotane she takes. If she takes all her doses by next clinic visit she gets to pick a toy out of the treasure chest. Technically she gets a white bead for every chemo treatment and each mitotane is a technically a chemo treatment...so at least we can help her visualize her accomplishment. I was also rewarded with stories of teenagers who refused to take meds....and this helps me how? I was looking FORWARD to the age where you can reason with them. Actually that's not the teen years- never mind. I'm losing hope.

On the way out of clinic, she wants another doughnut. SO we stop by the vendor and get another doughnut. She hasn't eaten anything in 4 days- if she wants a dozen doughnuts and can keep them down- power on sister friend. I had parked on Oceanside because the ward is Oceanside and if we were admitted, the car would be closer for me to grab the bags out of. Also- if you park The clinic is Mountainside and I always get lost going between. So I go the way I know- We are stepping off the 2nd elevator(it takes two different elevator rides) when we bump into one of the nurses from the floor. She says they were expecting us, but glad Lily gets to go home. We are on our way, and we bump into our medical social worker.... During this pause Lily realizes she has lost nee-nee. We NEED to find nee-nee. I tell her that nee nee is in my bag and I'll get it- I usually carry an extra- but there is no nee-nee. While I am searching she says- NO I dropped nee nee in the elevator- we have to go get it! How could I publicly deny her this? SO we retrace our steps. We wait 20 minutes for the exact elevator we were on- which only seems to run from floor 7 to 4 and back up. We are on floor 1. I am tempted to ride another elevator up and ride that one down- but Lily will not hear of it. We repeat the process for elevator # 2. All the while Lily is going on and on about nee-nee- it's gone- we have to find it. We get all the way to the doughnut stop- I KNOW she had it there, I saw it. No nee-nee. No one's seen nee-nee. It's now after 2. If we don't leave soon, we will sit in traffic. I have nee-nees at home. So I tell her I'll call Florence and she will find nee- nee and bring it home. The whole way back to the car- We need to call Miss Florence, she needs to bring nee nee to my house. We actually make it to the car. Lily will not leave until I call Florence. I call Florence- You all are still here? Yea- we lost nee nee. AAAAAAHH. You'll never guess what I found outside the clinic door by the vendor? says Miss Florence -Yep- nee nee. SO Miss Florence brings nee-nee to the car and we get to finally head home. In about 3 minutes- Lily is crashed out and nee nee is on the floor. Nice.

Wednesday, December 17, 2008

Weight Issues

So "extra bag O' stuff" it is. We made it home from clinic, no fever, yet. The bad news is that Lily lost over 3 pounds since Friday. As it turns out, I cannot merely eat FOR her to help her maintain her weight. She literally has been unable to keep water down. If she does keep it down- it runs through her poor little system. Although some vomiting and diarrhea is expected, hers lasts for about a week and a half after treatment stops and she is losing too much weight. Lily has always been a big girl with crazy curls and the personality to go with it. The curls or gone, for now, you literally can see her bones and we are only almost half way to the halfway point.

SO the discussion yesterday was what to do about the malnutrition, nausea, diarrhea, and vomiting. The recommendation is a feeding tube. We are fairly familiar with these from our adventures with pancreas boy. The type they would like to put in is a G-J tube, which is different than Phillip's N-J tube. It will go in her belly, past her stomach into the jejunum. If we put food into her belly, it's just gonna cause more nausea and vomiting- so it has to be put in past the pyloric sphincter. It's an outpatient procedure, so she could go home after a couple hours in recovery. Then we would give her food through the tube and potentially some of her medications- which is a plus considering how stellar the medication administration has gone thusfar. The thing is, we have to wait until all her counts are stable enough to do surgery, which means this will be the first big delay in treatment. I guess a gastrenterologist does the procedure, but we've requested Dr. E since she knows Lily's innards so well. I'm not sure when all this will happen, like I said we have to keep an eye on her counts.

Tuesday, December 16, 2008

No fever....yet.

We made it throught the night. Since Phil was on alert, Lily slept with me. Which means I put towels under the sheets, and a waterproof pad on top- just in case. And wouldn't you know it, she didn't pee at all. Great, so now I'm worried about how dehydrated she is. She just went- Ok, she's somewhat hydrated. Still throwing up too. Another tally in dehydrated column. We go in to Clinic today so I'll have a better idea of how she's doing. Last time I packed a just in case we have to stay bag....and we had to stay...so now the debate is.....do I pack a just in case bag? Or if I merely rename it "extra bag o stuff" will that have the power to control our fate? We shall see.

Monday, December 15, 2008

A Family Affair.

It's never too early to learn sterile technique. Especially in this gene pool. Of course now Lil Phillip has the cold and has been quarantined to his room. The IV fluids at night for Lily have really helped. Lily still isn't keeping much down. She is doing better than last time, but getting her to takes meds is exhausting. We can hide 2 medications in kool aid, but the mitotane is a big pill pand a half, 4 times a day. And when she throws up, we start all over. I've started trying to teach her to swallow pills with the hydrocortisone -which are significantly smaller. Right now she is sitting on the floor with her mouth wide open, saying that she doesn't want to take it. So I'd have to say it's not going well. Oh wait, she's drinking. That took about 15 minutes. Never mind, it just came back up. Well this is a bundle of fun.
We've tried everything we can think of to get her to take the medications. The anxiety makes her throw up, the medications make her throw up, and she's smart enough to know it. It's hard enough when she is feeling a little better, but now- when she's not really even eating or drinking- it's torture. On everyone. The kids go to other rooms in the house when it's med time. Which seems to be just about all the time. Saturday, Phil took Phillip out to do some Christmas shopping and yesterday I tried to finish up stocking stuffers. People are all grumpy about lines and such and all I am thinking while I wait in line is that I should be home holding Lily, I'd rather be home holding Lily. And then I arrive home to fits and puking and the waiting in line thing doesn't seem so bad.
Lily doesn't try to get out of bed at night. She just yells now Mom! Dad! Wake up! Sometimes she wakes up in the middle of the night with dry heaves, sometimes she wets through her pull up. Last night she soaked the bed. She didn't want me to change the sheets, she just wanted to come to bed with me. So I wheel the darn Iv- which is to say carry because wheeling the silly little wheels across carpeting- doesn't really work. I get her settled and wedge myself between her and Phil- approximately 10 minutes later her tries to roll over- Bella is on the other side of him. I sit up thinking I'll go find alternate sleeping arrangements- Lily senses movement and is up too. She wants to go downstairs. Ok. By this point Phil is up and helps carry the IV and Lily and her 12 stuffed friends and nee-nee downstairs. He settles into the recliner- GO TO Bed! I tell him- he has to fly today- I do not need to worry about him being tired. Like he isn't suffering from exhaustion and 1 night of only partially interrupted rest will make all the difference. I finally get him to go back to bed, find appropriate programming and kool aid for Lily and lay down next to her on the couch. I am just drifting off to sleep when I feel a little person climbing on me. It's Bella- she's up. I look at the clock, 2:37 am. Ugh. I get her juice. Lily's throwing up again. Now Bella's touching Lily. We finally crash and I hear Phil getting ready for work. We must have been a sight, Bella laying across my legs, Lily curled up on the floor next to her IVpole. Tonight will be the same point that in last cycle that Lily got her neutropenic fever. They say we can expect similar patterns, but you never know. Phil is sitting alert overnight so I have Carrie on call just in case.
Lily just retrieved the pack of turkey out of the fridge and is eating it. She shoved a whole piece in her mouth.....this is gonna be messy. Nope- too much she's spitting the extra out, into Bella's bowl. Here comes Bella, I bet she's gonna eat it. I bet you $5. Ha! You owe me. I am surrounded by icky.

Friday, December 12, 2008

Give daddy a hug!

Some of you may not know, Phil and I have been buds for half our lives. We've seen alot together in the past 16 years for being such youngins. We have learned to communicate pretty well. Sometimes during times of exhaustion and stress- lines of communication break down. Last night was one of those times. When you are on the outside looking in, sometimes the solution is easy. Like when the kids fight we always say-tell them you're sorry and give them a hug. If I didn't have this blasted cold, I'd just do things my way. I really like things done my way. Phil usually humors me and my quirks. After Phil set up the IV, I would have climbed into Bella's bed(Bella and Lily share a room and Bella decided to sleep in Kiera's room) just in case Lily would wake up and try to get out of bed. But since I'm sick- I didn't think coughing in bed next to the soon to be neutropenic patient was a great idea. I mean hanging out at resort tripler has been a blast this past month, but once the vacation's over it's just time to go home.

I tried to convey my concerns to the love of my life. He answers -she won't get up, she'll be fine. But what IF? She won't. But what IF? What do you want? I want to sleep and I won't sleep because every noise I hear will make me jump up to make sure she hasn't pulled the IV pole over on herself or ripped her port out. She won't. But what IF and What if Bella comes in and pulls on it? AAAAAAAAAAAAAAGGGGGH. Lil Phillip wants to know why we are yelling. We're not yelling, we're talking with passion.

Phil doesn't like what if's. He spends half his life dealing with "what if's" aka EP's in the Eagle- but on the homefront- nope. It'll be fine. MY job is to take care of the worrying. That's what I do. I don't plan for all contingincies- but that's merely due to lack of time. Putting a bumper rail on Lily's bed will help remind her not to hop down and walk away. Bella refuses to let me take the bumper off her bed....Lily's old bumper broke....SO I call our neighbor- Shelley. Shelley is the Martha Stewart of our world. We've been neighbors for 4 years and If Lily wasn't sick I'd be pouring all my efforts into sabotaging their impending move. She cooks, cleans, designs, sews, draws, paints,scrapbooks, woodworks- you want it- she can do it. If I need butter- she has it, a babysitter- yep- can you take the kids to school? Sure. Can your husband jump my car- Of course. Got any sugar? yes. A bedrail. You got it. Man I'm gonna miss her.

Phil sets up the rail. I put Lily in bed and he grabs my arm for a hug. I don't want a hug right now, to me this is not solved. This is a bandaid on a wound that needs stitches. I go to the bedroom and we continue our "discussion", I don't want to stress Lily out. I will sleep in her room, he tells me- I just haven't slept in four days and wanted to sleep in my own bed. I don't WANT him to sleep in her room. I KNOW how tired he is- I was there 21 days ago. I know exactly how he feels. We are the only two people who know exactly how this feels right now. What do you want? He asks again, fully prepared to give it to me. I don't know what I want, but I know exactly what I don't want- I don't want THIS. Any of this crap. And I would do it my way, but I am sick and I know doing it my way will only make things worse. We agree to disagree- he goes downstairs. I am on my way to apologize when I hear Lily wimpering. I think she must have heard us. I go in and hug her. You didn't HUG daddy. I know daddy and I were fighting like you and Bella fight. I love daddy. Give daddy a hug! OK.

By the time I got downstairs, Phil had the solution. He would keep an eye on Lily until he was ready for bed, I would take a nap now, he would wake me up when he came to bed and I could go check on Lily. That sounded fair. I was pretty sure he was saying that just to get me to bed- in the sleep sense- but I was too tired to call him on it- I knew I'd be up coughing in a couple hours anyhow and I would check on her. I crashed, and at 4am I roll over- no Phil. I walk down the hall, and there he is, asleep on Bella's bed. And Lily didn't get up he tells me- but IF she would have, he would have been there- I should have known that. I'm sorry buddy.

Thursday, December 11, 2008

Home again

Lily's home. She's pretty worn out and we are getting ready to start our first night of at home IV treatment. Just trying to work around contingincies like- what happens if she gets up in the middle of the night while attached and forgets she's attached.? I have a feeling I'll be up keeping an eye on her.

Chale and Keola came and hung out with Bella while I retrieved the lily monkey. Since it was pouring all day, Phil wisely decided transporting pukey monkey in his vehicle that has no air conditioning with the windows rolled up did not sound like a whole lot of fun. He then got some quality time away by doing our grocery shopping for the week as Lily and I made our way home. Lily was happy to have some Chale time when we got home and Bella was relieved that I reappeared in less than 24 hours.

Watching the Rain, Waitin for Rainbows

Phil just let me know that Lily is doing well and her counts are up. The transfusion did good. She is going to get her day 4 treatment this afternoon and be on her way home- where hopefully I can keep the germs away from her. It's a good thing I wasn't a germaphobe before- because I would be losing my ever lovin mind right now. I kinda feel like fastening a clorox wipe to Bella's face- would that be bad?( rhetorical question- it says right on the box....although Bella has been known to use them instead of Baby wipes...not one of her finer solutions) Although if I get her to wear mittens- I could fasten clorox wipes to the outside of them....As much as I have been tortured bein away from Lil- it has been nice bonding again with Bella.

It's pouring here. There was actually lightening last night. Our house is steel frame so storms here are a step above being in a tent during a storm. Bella hopped into bed with me and would sit up straight and say "scared mommy" every time there was a flash. I finally got her tucked under the covers so she couldn't see it. This morning as the kids bundled up, we listened to the school closures on the radio. It always amuses me. It's raining. Fortunately school was still on! I did point out that this is the closest we'll see to snowstorm or anything remotely winterish. Remember my comments about rain and following rainbows.....sometimes we gotta just weather the storm.

Wednesday, December 10, 2008

Wednesday Cycle 2 Day 3

Stardate 12.10.2008 Jen's log 60 ish? Starship Lily has recently been attacked by adenocarcinoids. Battle is raging.

I would need much stronger cold medicine to keep that up- too much brainpower. It was fun while it lasted.

Lily has not yet had her transfusion. Told you. Good thing I wasn't holding my breath. But Phil has the official log book at the hospital so he can do his geek number crunching(ha ha ha) and postulate data and such and so forth...her numbers will go down and based on the cycle, we can predict that she will need blood in the next day or so. She was going to get it earlier but the blood bank got all jumpy and took the blood back too soon and now can't return it until later. Phil and Lily were gonna snag a night pass and sleep at home, but she's pretty run down so they are gonna stay checked in at hotel tripler. Probably just as well since my nose is running like mad and Bella seems completely unable to cough and sneeze anywhere except directly into your face or your food.

Phil said they received a visit from Santa and Santa can do a mean hula. Then Lily apparently puked all over her port dressing and they had to change that...but other than that he says there's not much to report. My neighbor just came and reported that our fence was loose and the winds are supposed to be high tonight, so her husband fixed it. Allright just got call from Phil- the transfusion is about to take place. I think his words were--They are goiiiiiiiiiiiin to breeeeeeeeeng de bloooood. agh ah ah. Easy Count Buddha. Keep your fingers crossed it all goes well.

Tuesday, December 9, 2008


Last night Bella fell asleep on the way home from baseball. That's right, you heard it- baseball has started again for Phillip. If he didn't love it, we'd soooooo be over it. But he loves it, so we put up with it. I put Bella to bed and then stayed up with Phillip until 10 trying to get his homework done. I finally called it quits and sent us both to bed. Bella joined me before midnight and said her belly hurt. While writhing around, she rolled off Phil's side of the bed. I guess she was expecting her daddy bumper to catch her. She lets out a big "owie" and climbs back into bed with me, on the other side. A little while later- THUMP! and Bella is off the other side of the bed onto the floor, this time she gives up and stays there. We all get moving about 7. My cough kept me up through the night and now my throat aches- I imagine this is why the girls have been so cranky- this stinks. The kids are ready for school despite my inability to do more than whisper at them, I have one foot out the door and Bella starts coughing and proceeds to puke all down the front of us. Nice. This totally rules out "us" visiting Lily. I was hoping to give Phil a little break today. Fortunately most moms struggle getting their kids out the door and I only had to make 1 call to get the kids a ride to school. I get the buckets and towels handy, the wash going, all in case this is not an isolated incident. It is not. Unfortunately Bella refuses to use any of the 3 buckets laying around "Dat LILyyyy's!!" as she proceeds to puke in her lap. That's dedication- puke all over oneself as opposed to using sister's (always rinsed and bleached) puke buckets. As Phil pointed out- Last time he checked EVERYTHING was Bella's so he didn't see what the issue was. Fortunately I had a different variety of bucket that Lily had rejected as too big that Bella felt she could use. Those who know Bella, know that she is 2. She acts like a 2 year old. If she wants it, it's hers- if she touched it, it's hers- if she doesn't want you to have it, it's hers. Bella is also known for not wearing clothing, that being said- those who know Bella, know that her rear left cheek is frequently hanging out. That is to say- it is always hanging out and if you don't see it, you're being a grown up and looking away or you've caught her on the rare occasion she is wearing clothing- well this morning the RIGHT cheek was hanging out. It's like a sign of the apocalypse- a mere symptom of an underlying disease- all was not well in Bella's world.

I then get the call from Phil- Lily is doing Ok, but they could really use some more pull-ups. I had figured I'd be back today and was going to take more- but with pukey pants- I had written it off. Bella had a 2 hour nap, woke up and declared she wanted crackers(cheezits) and cweem(ice cream). I gave it a go and after a bite of ice cream, she declined it but ate 2 helpings of cheez it's without any reappearing. Good- we can take Lily some pull ups and daddy some lunch. Bella crashes in the car and wakes up in time to see daddy in the loading loop in front of the hospital( we can have no contact with Lily in our current state today)- "I want daddy!" The look of happiness on Phil's face(one does not hear this out of Bella much) followed by the comment "She REALLY isn't feeling well is she?" Add it to my resume- Dinner and Diapers with Drive-thru ease...

They are again talking about transfusing- I'm not holding my breath anymore. Day to day- unfortunately it's Lily's hemoglobin that's low and that doesn't tend to bounce back at the same rate as white blood cells-but apparently it comes from a reliable source. The news not the blood. Well I'm positive the blood comes from a reliable source too. I guess they even get specially treated blood for cancer/neutrapenic type patients. oh yeah. (insert sarcastic tone now)

Monday, December 8, 2008

Up and down up and down

Phil took Lily in to the hospital last night for hydration before the chemo today. I have the girls' cold and we decided it was best for me to try and "rest" and try not to make Lily sick. Phil started packing and as soon as she caught on after dinner, her dinner made a reappearance on my carpet. A big case of nerves and I don't blame her. Lily's blood counts were low again this morning. That was expected since we stopped giving her the shots that boost her white cell production. Her kidney function was back up. So chemo was on then off then on ....finally they started around 4. So far she's peed through 3 sets of pj's and a blanky so I'm guessin she's hydrated. They know that she gets pretty sick the week after treatment so they will send us home with IV fluids to help keep her hydrated. We also are going to get briefed on different meds and things to try as soon as she feels warm to combat some of the neutrapenia problems. She's been placed on hydrocortisone to replace the cortisol her remaining adrenal gland is not producing due to the chemo drugs.

Another cancer patient on the ward turned 9 today and had a birthday party in the playroom. It's all relative since she too is neutrapenic- but all the nurses,docs, and other neutrapenic kids got to go. I had stopped by to visit with Lily and we were battling a big rough patch. I couldn't go to the party because I am sick and Lily did not want to go without me. A little ativan and the news that there were hot dogs, doritos, and ice cream at the party made my presence no longer necessary. The birthday girl- clad in fairy wings and tutu -loves chuck e cheese's. They go there every chance they get when her counts are up. I would not be so brave- because even my healthy kids puke after a CEC visit....but to each their own. Well Miss Julie knows this and arranged for Chuck E to come say Happy Birthday. Of course he had to be hosed down with germicide before he could come on the ward and he wasn't allowed to touch the kids and vice versa- but as usual- the first thing you see is kids running in all directions either grabbing onto Chuck E's leg or running away in terror. Now that's what I call entertainment.

Sunday, December 7, 2008

Tis the Season

The carolers are out in full force at the hospital. Julie and I had just been talking the day before about how the strangest things can set you off emotionally. Apparently for me it's Jingle Bells sung by teenage carolers on the peds ward. I think 2 nights of no sleep contributed to my sob fest, but it's hard to say. Fortunately 2 nurses collected me into the office and Julie distracted Lily while I exorcised the demons. yesterday, there was a Christmas Party that Santa was attending. Phil took Lily to see Santa, I'm glad I wasn't there. I'm having a tough time dealing with the jolliness of the season and how people's demeanor changes when they see her. It's like being the world's biggest buzzkill. Nothing says Christmas like a look of total sadness followed by a forced smile- hmm, actually that covers most work parties, never mind.

This hospitalization was due to Lily having yet another virus plus a bad reaction to the antiviral she was on, which decreased her kidney function. The virus caused the fever and new rash. She got some extra hydration and her fever has been gone for 24 hours. All of her Blood Counts are up and she's not neutrapenic, although she is treated as if she were for extra precuations. Which means cycle 2 starts tomorrow. 1 down, 7 to go. She only has a thin layer of peach fuzz on her head and her eyes look perpetually sick. But every now and then you get a precious Lily smile and then I remember why we are doing all this.

Lily was "discharged" yesterday and came home at dinner time. Stewart and Jackie were on hand helping me around the house. The plan was for them to help with the kids so I could get to the hospital, but I seem to be catching the virus the girls had and thought it best to stay home. I think Phil's words were "I've GOT it here- stay home and rest". So Phillip and Kiera went off to play with friends and I utilized Stewart's height to retrieve Christmas decorations and Jackie helped me get the tree ready. Considering we've spent 11 of the last 21 days at the hospital- I'm not sure we'll get another chance. On the postitive side, not only do I have an amazing group of friends - my mom does as well. She was scheduled to work Christmas, but her Co-workers at St. Anthony's North all arranged their shifts to cover for her so she could be with us. I am so happy she is going to be here to help make the season magical for the kids despite our crazy circumstances. Thank you to everyone who had a part in this- that is truly the most wonderful gift.
We go back in tonight for hydration. There was a question of whether or not we could do the cisplatin because of her decreased kidney function, but it is back up and we are a go for torture session 2. I questioned the sanity of packing up and coming home only to turn around and go back- but everyone had a good night's sleep so it was worth it. It also helps that they let us leave our stuff in the room. So really it was more of an overnight pass than discharge. Lily is still sleeping. I went to bed at 8, so I've been up. Kiera found another package of ornaments somewhere and is putting them on the tree. I think the plan for today is for Phil to catch up on yardwork and if everyone has energy- to go see the zoo lites and then check in at hotel Tripler.

Thursday, December 4, 2008

Loop it is...

We are back in the hospital . Lily was really tired yesterday and complaining of headaches. She woke me around 1 am with a tummy ache and more headache. She had a temp of 100.3 so i gave her some meds and kept an eye on her. She also started developing a rash on her chest. It looks allergic or viral, but maybe I'm hopeful because those are easier fixes. She finally fell asleep and has been in and out since then. She had a hearing test this am so I decided to take her into clinic After to have the rash checked out. I watched her nod off twice during the test and couldn't help but tear up. I hate to see my monkey like this. Its actually worse than being disowned. We head over to the onc clinic and Her temp was 101.7, which is another free 2 day pass to the Peds ward. And here we are. On the positive side, for 27th alum... I saw Kate and Brad Smith on their way to LND and they could not stop to chat as she was very much in labor! That at least cheered me up a little!
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Wednesday, December 3, 2008

IV Carrier

So we give Lily IV meds 3x a day in addition to the 85 other meds we try and get into her throughout the day. It actually is easier than the rest except her port can't get wet and she has to carry around a little balloon for an hour. Relatively painless. Even less painless when you get someone to carry it for you.

I then caught them playing in the sink in the bathroom. They weren't running water- Lily didn't want to get her port wet. So they were cleaning the Barbie Dolls with their toothbrushes. I was too busy gagging and confiscating toothbrushes to look for the camera.

The reason the morning is going better now is quite simply- Ativan and a full dose of it. She would have been running laps around the mall last week with a full dose, this week she got herself up off the couch and found mischief. I'll take it. Now I have to go retry her oral meds- last time she doused the floor in vomit when we attempted it.

Tuesday, December 2, 2008

Home Again

We made it home. 1 flat tire and 2 vomits later...we made it home. Lily's white cells were back up and she hasn't had a fever since the night we admitted. She will be on IV antivirals at home. We go back Thursday and Friday for our normal pretreatment work ups and will be back in the hospital Sunday night for round 2 hydration followed by the actual chemo Monday and on. We upped her mitotane again Monday so she's nauseous and throwing up. And the antivirals cause nausea. No shortage of that these days. If I haven't mentioned it before..this is a blast. Oh yeah and the hair...everywhere. Comin out in clumps. She rolls over at night and sneezes and starts coughing because it gets up in her nose and mouth. On the positive side- once it's all out we won't have to deal with that for the next few months and at this rate that should be relatively soon. Poor Monkey. Are there hairless monkeys? Kinda like those cat/rat things that are hypoallergenic. As soon as Phil gets home- I am in bed.

Monday, December 1, 2008

Today in History...

I was going to list a bunch of events on this day in history...who has time? So Let's Pretend...fascinating event 1, event 2, such and such , so and so was born, yada yada.

But most importantly on this day in history, 33 years ago Phillip "Buddha" Mallory was born. This is THE most important event on this day in history that I could imagine. He is my best friend, my strength, my caretaker, and the best father I could have ever picked for our kids. He spent all day yesterday cleaning and doing laundry so I could relax when I got home. He is the most amazing man I have ever met and I am so glad that he is Lily's dad because without him, this would be way more awful than it already is.

Happy Birthday Buddy, I love you! Last year....

On the way back up!

I was hoping yesterday was the bottom. I really really was. Her platelets were up to 34 this morning, so no transfusion today! Thanks for the prayers, they're working! Unfortunately for you all- you will be very busy for the next few months as I will blame any downward turns on lack of committment on your part.( You do realize I am joking- I do that when I start to get verklempt). I think her angels have been working overtime too, I know she's got an Army looking down on her on a daily basis. Last week I was tucking her in and she was doing her dramatic show when she gets tired- I love daddy, I love grandma, I love grandpa. Which grandpa sweetie? You KNOW! and the twinkle in her eye said it all. Grandpa comes and plays with me in my room. That would be my dad. I'm glad honey, he's a lot of fun isn't he? Yeah. They've always said children are much more receptive to angels.

Well we've gotten down the first big hill of the 'Cancer Coaster' as my aunt calls it. Unfortunately each time it's a different ride so we don't know if we should expect a series of small hills, another big hill or God Forbid a loop. Gotta breathe while we can- no sense worrying about the next hill. We'll deal with it when we get there.

Lily Kay Monkey

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