Sunday, November 30, 2008
Saturday, November 29, 2008
Friday, November 28, 2008
Sent from my BlackBerry® smartphone with SprintSpeed
Thursday, November 27, 2008
Wednesday, November 26, 2008
Monday, November 24, 2008
Sunday, November 23, 2008
As I alluded to yesterday... I have the most amazing group of friends. I had no idea HOW amazing. Friends who hijack contact lists and build websites. I knew I kept you all around for a reason...xoxoxox
Some of my dearest friends have put together a blogsite called Helping Hands for Lily and the Mallorys in order to help us with some of the emotional and financial challenges we will face this year helping Miss Lil fight cancer. Fortunately the military covers all of our medical costs, which is a major plus. There is a section in the blog for comments which is my favorite part. Phil and I are completely awed by the support we have been given from across the ocean as well as here on the island. From old friends(age as well as timeline...hee hee hee) new friends, and even complete strangers have come together for us. It is humbling.
Saturday, November 22, 2008
The next big question is how we do it? I was highly irresponsible and fell asleep the day they were handing out lots in life. This is what was left. If the good outweighs the bad- either I have had some killer times or I am gonna- that's for me to know! We do it because we have to. We don't choose our parents, they choose us. My parents gave me the gifts that will help me get through this, I will do the same for my children. I got to choose my partner and I married my best friend. He knows me sometimes better than I know myself and usually vice versa. We cram in communication between bites of dinner and doing chores. When I am tired, he takes over so I can go to bed at 8 and I get up at 2am so he doesn't have to. When we are both exhausted, we muddle through together. There have been days when he had to work and when the little ones actually fell asleep and I cried so hard I literally passed out in bed. And when I came to, it was all still there except that now I was late to pick up the kids from school. SO that's when our family and friends come in and help pick up the pieces. All I had to do was make a phone call and the kids were taken care of. I don't like it when people have to pick up the pieces for me. I have never been the socialite, or a party girl. There's more to life for me than the superficial so I have a few, close friends. I surround myself with people of quality, not quantity. I have friends who have been through it and seen it all with me. Friends that have earned family status. Situations like this also expedite the extensive screening process I have and acquaintances either fall by the wayside or are promoted to friend status- kinda like a battlefield promotion. And for those of you who know you have earned friend status and are having a hard time coping with all this- I understand. It sucks. Call or email when you can. If all you can do is pray, pray. It helps. I know so many have said they don't know how or what to say or do. I understand. It's OK to do nothing. It's Ok to do something. If it's from the heart, I will understand and appreciate it. If all you can do to help is make your own life easier and better, that's OK. Pain is temporary, love is forever even if it is only the memory of love. So here's some ground rules.
Be yourself. I'm pretty good at understanding human nature and I'm getting better at telling people when they bug me.
If you want to call or email, do it. Believe it or not I can choose to answer my phone or not- I can even turn it off when I need to.
Call First. Even if you just happen to be passing by in front of my house or at the hospital- please do not come by unannounced. We have to be vigilant about Lily's rest and germs.
Be patient. We are prioritizing the best we can. If I don't get back to you right away, I will as soon as I can. I may have forgotten, a reminder is OK- but we are impossibly busy and doing the best we can in the order that is best for us and Lily.
Be flexible. If you aren't sure, ask. We have a calendar, but we are keeping it in pencil.
No Sickies. Sick humor allowed, sick people not. If you or yours have even a sniffle or sneeze, reschedule a visit. Even a cold could put Lily in the hospital. Even if anyone in your house has been sick. We won't be doing big parties this season for that reason. It's not that we have gone into hiding...I've never been a germaphobe...now it's being imposed on me.
It's funny how much semantics can bug a person when they are stressed. Sometimes everything anyone says or does will be wrong. I had a tough time getting it all done before Lily "got sick." We want to be "normal" but our "normal" right now is no where near what anyone would consider normal. So treating us like nothing is going on will bug us. On the other hand treating us like we are porcelain dolls will drive us insane too. See the conundrum? Everyone has been amazingly generous and helpful. Phil and I are humbled at the support we have been given. We are truly grateful for it all. We are both very independent and have prided ourselves on being able to get through many tough times without having to ask for help. Asking for help is excruciating, but we are learning. For those who know us so well and are trying to anticipate our needs and help accordingly, thank you so much. Thank you for doing. The prayers, food, gifts, cleaning, all of it- has been an amazing help and lets me focus on the important things right now- and that's my family. It helps me find the time to blog and heal the little stress wounds. Thank you.
The girls' message for the day: When it pours grab the umbrella and dance.
Friday, November 21, 2008
So Phil brought me breakfast/lunch at the hospital around noon yesterday. I was exhausted. Lily had to fit in doses of Mitotane last night(which is technically 2 nights ago since it is now Friday...) since the suture removal required sedation and then by the time we get settled back in the room we are way off schedule. As I've mentioned before, waking up Lily is a treat. Although after another session yesterday with Julie- Lily actually took 2 doses of medicine completely by herself with minimal puking. I let Phil do the discharge dance with Lily while Bella and I ran to Walmart to get some things for home care and came home. My mom called in a cleaner and the carpets looked really good. I take the laundry from the hospital into the wash room, get it started and am working on getting Lily's space on the couch set up as Bella is crunching rainbow goldfish and flinging them around the kitchen. She is put outside to play like the puppy she is, I clean up the mess- she's back- in need of a pull-up change. I tell her she really needs to put that in the potty. I grab a quick shower and as I get out- I hear Bella running up the stairs- Mommy- I did it! She runs into the room and I bend down as she throws her little arms around my neck, her sweet little arms that smell like poo...WHAT did you do? It's not that I don't know the answer- I just need clues as to where so I can go get it cleaned up- I toss her in the shower- clean off my neck which I know I will be smelling for the rest of the day- whether or not it is gone and head downstairs- carefully to investigate the matter. One little smudge on the freshly cleaned carpet by the kitchen- that means there's an invisible trail....ugh...what looks like an attempt to clean up poo in the kitchen. Smudges on the floor- 25 wipes in the trash can- I grab the bleach and give the entire kitchen floor a good spritz and tackle the spot on the carpet. I ask the source of stinkiness where else there might be poop and with her sweet little voice- she says " I did it! Pooped in the Potty!" and then she does this proud little jig. Off to the bathroom. I won't get into the nitty gritty details- but the event happened in the kitchen and was carried to the potty. I DID tell her she needed to put it in the potty. I think she may have attempted to wash her hands or at least tried to wipe them off on every surface she encountered. This is why bleach is my friend. I spritz the bathroom down and return to the kitchen to mop- and finally get the mess contained when Phil calls. They're on their way. It's 5 ish and I am about to ponder dinner when I get the call back- Lily just puked all over and by the time he could pull over she was asleep. Just come home- she'll be ok. I'm not so sure about Phil though- sitting in a camry with no AC(still 80 degrees and beautiful- not that we get to enjoy it much and definitely not under these circumstances), in rush hour traffic marinating in the eu du chemo. I run her a bath in the kitchen sink- the best place to get her clean without soaking her still-accessed port. A new little Dora figurine(Thanks mom) just arrived in the mail, so I unwrapped it and set it by the sink. I then gather all the materials Phil will need to clean the car. Apparently the stench got to her and she woke up and threw up again. They make it home and she immediately grabs her new Dora friend and I get her cleaned up and show her her spot on the couch. She sucks down cherry Kool-aid and asks for some rainbow goldfish. All I can say is that the next round of vomit was very brightly colored. As Bella sits and crunches goldfish into the counter. What is her deal? I manage to get everyone fed and it's time for Lily to take anti nausea medicine. This is a tab that dissolves on her tongue(Thanks Jaim) and it works great- if only all meds could be as easy. She starts to perk up and is playing with Phillip and Kiera- showing them all her new treasures and beads. She is getting tired. She has significant circles under her eyes and just looks pekid. She asks to go to bed. We have to give one more med. The mitotane, the one that will kill her adrenal cells. We have to crush it up and put it in something- she asks for banila pudding. I am impressed, Julie must have worked wonders this afternoon- Phil hands her the cup and the spoon and she starts eating it. Much better than the previous sessions of me holding her down. Her eyes get big- don't do it! Just swallow- don't think. And out it comes. She literally projectile vomited all over the side of Phil. He throws a towel on the floor- grabs another pill and starts crushing it up. Peanut butter is the vehicle of choice this time and this time she makes it through. I get her tucked in we read 2 new books( thanks Gina and everyone!) , arrange childcare for tomorrow(today) and soak in a hot tub for about 5 minutes before I crash. It's amazing how after a few nights of less than an hour of sleep between wake-ups how refreshed one can feel after 5 hours. Unfortunately it's temporary. I better try to get a few more winks before the day has to start. Today we have the last round of this cycle.....yeah. We go to the hospital for it and should be home this afternoon. Then this weekend we have to start shots at home- THAT is gonna be a barrel of laughs. Literally a 2-3 man job.
Wednesday, November 19, 2008
Tuesday, November 18, 2008
Sunday, November 16, 2008
Saturday, November 15, 2008
Friday, November 14, 2008
Thursday, November 13, 2008
I think I may have mentioned before the nightmare of parking at Tripler. Yesterday I knew I would have to go to both sides of the hospital and it really didn't matter where I parked. Sometimes when one side is overflowing, the other side is fine- it just all depends. I drive by the oceanside lot- it looks pretty packed. I try the parking garage- nothin- all right I'll valet- nope they're full too. Okey dokey- back to oceanside. I "luck" out- a lady is pulling out- 2 rows from the bottom of the mountain. I can no longer say that I have not worked out in months. I am very glad I brought the stoller, I can just see Lily managing to hobble the walker half way up the hill only to roll back down. We finally make it into the surgical clinic and I'm handed the standard packet of papers every yahoo has to fill out...do you have any pain today?...might you be pregnant?....I wonder if I put extreme answers for everything if anyone will notice. I just manage to maneuver the stroller into the corner where the "play area" is- as the nurse calls our name-the cancer kids always get speedy treatment. The nice soldier with the broken leg looks less than amused as he has to hoist the leg back so we can wiggle back by.
Everyone loves Lily's shirt. We meet with Dr. E who would really like to remove some stitches so that the scarring isn't as bad on Lily's leg- but Lily will have no part of it. Considering Lily's immune system will be so compromised- she says leaving the stitches in for another week isn't a big deal- she doesn't want the wound to fall apart during chemo. Nice. No wonder Lily thinks her leg is going to fall off. Meanwhile Lily is doing a fabulous Rainman impression rocking back and forth humming some tune. The decision is made, while Lily is admitted, she'll stop by and give Lily a sedative so she won't freak out about some of the stitches being taken out and we'll repeat the process the following treatment. Lily gets her Dora sticker and we are off to Oncology for the ECHO.
We hang out in the Onc waiting room, coloring until the doctor is ready for us. I realize the markers are smelly markers and point this out to Lily. Big mistake. I now have every color jammed up my nose under the directive "SMELL!" I am feverishly trying to wipe the rainbow of fruit flavors off my nose and hers as Dr. Somethin or other comes in and asks " have we met before, you're very familiar?" Yeah we're regulars, you've seen us around- what gave it away- the blueberry scent emanating from my face? I have also noticed, as we walk down the halls, everyone stops and says hi to Lily. Not just hi- but Hi Lily. I know she's memorable and all- especially back in the fro days- but I'm beginning to worry that she's very seriously ill or something the way everyone is lovin on her. People that I know we have not met are huggin her. We make it to the Ultrsound room and I have to take Lily's shirt off so he can look at her heart...The No Owie shirt...the one with LILY on the back. See what lack of sleep does to a mommy.
Tuesday, November 11, 2008
Monday, November 10, 2008
My good friend Gina had a great idea to help get books for Lily to pass the time during chemo. She is putting on a book show and Lily can get free books! Information from Gina is below!
Help support a bookshow to benefit Lily! By buying books (they make great Christmas presents!) for your friends and family, Lily will benefit by receiving free books! For every order over $35, Lily will receive an additional free book valued up to $10.99 (just email the title you'd like to send her to firstname.lastname@example.org). All the benefits and profits from this sale will go directly to give Lily books to help her during her time in the hospital throughout the next year. Usborne Books are fantastic books for children of all ages that make learning and reading fun. They sell more than 1,300 titles online including books, activities and puzzles for children of all ages. The website can be overwhelming, so I would be happy to give suggestions for books for different age groups! www.ubah.com/w2300
Saturday, November 8, 2008
Friday, November 7, 2008
Lily has some pain, but we are managing it. She will get a kid-sized walker( as opposed to crutches) tomorrow or Monday. She's only allowed to put weight for balancing on her right toe, but she's smart enough to avoid even that.
Chemo is now set to start Monday Nov. 17th and we have another busy week of appointments and tests next week.
I will catch you up on all the details tomorrow when I am a little more rested, maybe!
Thursday, November 6, 2008
The day started off with a 0425 wake-up, which by the way, thanks to my OCD and the triple redundant alarm clock system, we actually made. Lily is extremely bright, and she knew the score as soon as we got her out of bed, "I don't want any owies..." I guess having our bags packed and the car running gave it away. We got to the hospital on time and were in the pre-op waiting area by about 0720. We told her not to worry, she would be asleep, and the owie would be a little less owie-licious this time around. She is an absolute trooper, she went to sleep at about 0730 and was drinking chocolate milk at 1030! and then she had ice cream, candy, jello, corn, some more ice cream and some water in between sips of Dr. Pepper to balance it all out.
The Dr. was able to excise the remaining portions of the 'growth' and created what we hope is a very clean margin. She didn't have to take much muscle at all, but did have to take a little of the achilles tendon which may mean crutches and limited mobility for awhile depending on what the people from physical therapy say. Lily was definitely reluctant to put any weight on it as one would expect, but this was clearly a much better experience than major abdominal surgery. The port that the Dr. installed left some pretty good bruising from her right clavicle down to her chest- Lily officially disapproves of this addition to her body. The access point, although beneath the skin, sticks out about an inch or so.
So, tomorrow we will meet with Lily's oncologist and set up the chemo, sign all of the necessary paperwork and begin the real journey. The first dose should happen next Friday as long as Lily's leg is recovering well enough; it sounds like we'll be on the chemo profile for about a year- More to follow. Additionally, Lily will most likely sleep in her own bed tomorrow night (Friday).
Thank you all for your thoughts and prayers for Lily!
Wednesday, November 5, 2008
I have to tell you about scheduling this pre-op appointment. I call general appt, push the required buttons to schedule in the surgical dept...get a very nice lady who cannot make my appointment for 11:15 because we have a radiology appointment at that time. Hmm-oh yeah like 85 steps ago before Lily had cancer we had this appointment to do an ultrasound on her leg because they couldn't squeeze it in with her abdominal U/S and then they squooze. So I have to call radiology to cancel, I call radiology and cancel- call back central appointments- still can't make appointment- she transfers me to Peds(I don't know why???)- and they transfer me to general scheduling who transfers me back to peds and I hang up and call the surgery scheduler back. " Is there an 11:20 or 11:30 that the system will let you book for me?" Mind you I am not a professional scheduler, although I have played one on tv. No 11:20, But 11:30's open- let's do that- and why couldn't we have done that 85 steps ago? All the while I have this nagging feeling we'll show up to the surgery clinic and they will have no record of any appointment or like 85 appointments on file and I will get marked as a no show and never get my gold star parking spot.
We get to the clinic-- ahh you have an 11:30 and a 12:00 appointment. of course. We go to the vitals room and they weigh the Lilster who as Phil pointed out is almost exactly .8 lbs lighter than her last weigh in. Blood pressure, temp, all good. The nurse looks at me and says, now it's your turn. Cute lil nurse say what? "You have a 12 o'clock with the genetic counselor so we have to do your vitals." But seriously- the scale? Haven't I had enough emotional trauma this past month? Do I seriously have to step up on the scale in front of a room full of people? I don't know if I looked like I was going to pass out or what but she asks me to sit down- "it's just a bood pressure and your temperature." In case I forgot to mention..I'm genetically predisposed to eating while under stress...I've been a little stressed lately. So I am sitting there and the blood pressure cuff is so tight I can feel my fingers going numb. Like my blood pressure is going to be normal. "It's low, we should do it again", Ok now I know the darn thing is broken my blood pressure has never been low.
As it turns out, The genetic counselor saw we were going to be in, had an opening and squoozed us(me) in. Would have definitely packed more snacks had I known that, but I have enough for the monkey. A resident comes in and does the "post-op" exam which entails looking at Lily's incisions. He made the mistake of saying the word "cut" In relation to a tiny stitch that was sticking out and Lily immediately pulls her dress down and turns her back on him. Of course I forgot the No Owies bracelet, but i didn't know if they'd have to draw her blood again and I didn't want it to lose it's magic. He leaves and Dr. E comes in, Lily immediately tries to find her happy place and has her head in my lap and is singing a song I do not recognize. She then blurts out that she has to go potty and I'm positive she's gonna make a run for it. She really just had to go potty. The meeting was cut and dry- she's gonna take a big chunk out of Lil's calf. Parts of the Soleus and Plantaris muscles will have to go, but Lily will meet with a physical therapist and she might have to use crutches for a little while. Phil and I both bust out laughing. When they make the movie- Phil's daydream sequence will be Lily in a Tiny Tim sequence saying "God Bless Us Every One". Then it will cut to me making a face and my sequence which is a Godzilla sized Lily swinging the crutches wildly as windows smash and siblings go flying.
The docs have decided to go with the port, which is this funny catheter that sits under the skin. She will be able to swim and be as "normal" as possible when she feel up to it. They agreed that a catheter with external ports in a 3 year old poses some problems- Yeah It's called Bella, she who likes to snatch. What's this cord???Riiiiiip. Blood spurting. No thanks.
After this meeting, the Gene Therapist comes in. She starts taking a basic history and I hand her the preprinted cancer tree I have generated at the recommendation of my personal doc. It really expedites the whole family history taking process. She asks Phil some questions- like he's responsible for 50% of the kids' DNA or something. He automatically is offended because she asks what nationality/race he is. I tried to explain that it is relevant and she doesn't just want to know out of morbid curiosity. He doesn't buy it. We talk about testing me for p 53 and screening and she goes to get the male nurse to draw my blood. I warn him I'm a tough stick, he doesn't buy it. He claims others probably didn't know what they were doing. Okey dokey. Knock yourself out. Lily is concerned that I have to get an owie, but visibly relieved it's not her. She comes over and holds my hand. He sticks me and she gets pale and Phil scoops her up- the nurse is poking around - a little awkward with the husband in the room... Still trying to find the vein, maybe over here, maybe over there, perhaps a little deeper. It doesn't hurt now- but it's gonna bruise like you read about. I finally suggest a tried and true vein on the other arm- "If you can see it, it's no good" he says. He finally concedes and tries the other arm. "That is a good one" Who told ya that? Yeah, we're done. Let's get lunch..........oh no we have to go down to Oncology so they can get a "good" weight and height on Lily to calculate her chemo treatments. Apparently the height and weight we just had done were not "good".
Of Course the scale is in what Lily calls "The owie room"and she immediately begins her no owie chant. We manage to get a "good" height and weight before Lil bolts out into the hall. She doesn't even breach the threshold for a sticker, but merely points to which one she wants. By the time we got home I threw dinner at the kids, I was beat and locked myself in my room. Phil came in to check on me...I'm just tired and sometimes it's better to remove yourself than to be mean to everyone. I ask if he can manage to hold down the fort? He says the fort holds itself....I wish I would have known that- because apparently I've been doing all this work for nothing. See now the need for me to remove myself? Lily comes in a little while later. Daddy said I have to go to bed. You wanna lay with me? Yeah. So we have some quiet time. She recognizes Obama on tv- He's downstairs too! yep, we're gonna be seeing a lot of him. The schools teach about elections and Phillip and Kiera both came home talking about who they were going to vote for.
Kiera is voting for Obama because he looks just like her uncle. Hmm. I was relaying that to a girlfriend who's 5 year old said he was gonna vote for Obama too because there were 2 boys on his team and the other team had a girl. That was too cute not to share!
We start flipping channels- she wants to watch some discovery show about babies, and suddenly it segways to a little girl who has a tumor in her spine. Lily looks at me, I have a tumor. Yes sweetie you do. I have a tumors in my leg and the doctor has to cuts it out. Yep. Is it gonna hurt? Yeah a little, but we can give you medicine that will take the hurt away so you have to tell us when it hurts. Ok. I want you to stay at the sospital with me. I will. One amazing cookie that one.
Monday, November 3, 2008
The reason for the hearing test is to establish a baseline. The drug cisplatin which will be used during her chemo can cause permanent hearing loss. We will be going in for these same tests a couple days before each treatment to see if the previous treatment has caused any damage. I am guessing if there is any permanent damage- it will be at whatever range I speak in- because that would be my luck. Tomorrow is the pre-op. Hopefully they won't have to type and cross again, but I have a feeling they will, which means another poke. Fortunately today involved no owies. Lily attributes it entirely to her wearing her new "lily no owies" anklet that one of the preschool moms made for her.
On the way home we stopped for dinner and were chatting about this and that and the upcoming surgery. I asked Lily if she wanted to show Grandma the owie on her leg. LEG. Leg. She hikes up her dress, turns sideways and proudly shows off her battle scar. I forgot to mention that On Halloween, one of Phillip's friends stops by- Lily as well as Bella have stripped out of their costumes and are just in underwear. He looks at her tummy scar and says- Cool- I want one! Boys. Told you they dug scars. ( Wonder Woman-Thought I was gonna talk about the pole incident didn't ya?)