Monkeyin Around

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

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

Bumpy start

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

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

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

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

Going....Going.....

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

Another day in Paradise...

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

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

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

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

Water gun Wars and Wrestlemania 5

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

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

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

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

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

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

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

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



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



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

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

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

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

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

Just keep counting....

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

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

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

Facebook

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

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

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

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

The Birthday Song as Recorded by Lily and Bella