One of those days...

Last Friday

I knew it was going to be a busy day and it was. We had to take the van in to get looked at. Apparently some belts are in need of changing...Bella disagreed with the necessity of her car seat. She actually managed to escape when I was in the act of driving the vehicle- all the while I am having flashbacks of Lily and Kiera doing the same thing. I think Lily is on her 4th or 5th carseat and what it boiled down to is that she finally relented and realized being in a carseat happens, there's no fighting it. But Bella's in a 5 point harness- the very harness that helped Lily realize the inevitability of vehicular restraint- and the little terror managed to wiggle out- that takes talent and an unprecedented bendiness. When I wrangled her back into her seat and fastened her so securely she then proceeded to tell me for 45 min(and by tell I mean scream at the uppermost level of her ability) how much she disliked being in the carseat and that the belts could be loosened a little( I hate seat and this hurts) . By the time we got home it was just enough time to gather supplies and head to clinic. Fortunately I knew there was the possibility of a transfusion and my friend Tracey was willing to let Bella hang out. Our visit turned into a 10 hour admission- which I like to refer to as transfusion slo mo.



Miss Florence wasn't in clinic today because she teaches a class on Fridays. From here on out- we will not be making scheduled trips to clinic on Friday and here's why. Lily doesn't like change. If you want her to do something a certain way- you darn well better do it that way from the get-go- otherwise there's no going back. No one but Florence has ever accessed Lily's port down in clinic. She literally had to skip around the entire clinic to make sure Miss Flowens was not hiding. She then used stall tactics- and finally ended up in all out tantrum. She has been sitting on my lap for the access procedure- earlier this week she got really panicky and moved which caused me to shift and long story short - the site had to be cleaned 3 times before we got her accessed and there was screaming and kicking involved. Today, as soon as she gets on my lap she starts throwing a fit. I gave her the opportunity to calm down, we actually had the site cleaned when she started kicking at people-at one point almost kicking me in the head and I'm pretty sure she got the chief of peds oncology at least twice in the gut. SO I called uncle and said it was time for the bundle. She threw herself down on the floor and it took 4 of us to get her bundled and still she had to be held down for the stick. It was lots o fun.



So of course her hemoglobin and whatnot were low, which bought us a trip up to the ward for a transfusion. I figured we'd be out in a couple of hours, I'd still be able to get Phillip and Kiera from school. Yeah- what was I thinking? Fortunately Tracey is prepared for such contingencies and not only kept Bella for the entire time, but picked up Phillip and Kiera- fed them and my husband too when he finally got done with work.



So Lily and I were hanging out. More correctly- I was told to leave(I believe the word hate was used but I can't be sure) Miss Julie sees me in the hall- she remarks that I look like it's been a rough time- more so than back up on the ward, Lily being mean, lookin rough. I GOT IT- I look like crap. So Miss Julie packs an arsenal of beads and toys for "angry play" so Lily can get her angry out. It helped Lily for her dinosaur to eat Miss Julie's Lion. Then she fell asleep. And she woke up. We finally finish and get to head home around 7:30ish pm. We get the kids down to bed. By the time I get to bed the pump is beeping. Lily has once again wrapped herself in the tubing and it has stopped. I carefully start the unwrapping. I go to bed. Rinse- repeat- This time she's managed to get the tubing wrapped around her neck- really I don't see why I can't sleep these days. An hour later I am called in to change a poopy pull up. Ugh. I need a good night's sleep.

Don't let them fool you....

They look like little ANGELS don't they? Turn your back for a second and they pounce. Lily and Bella have been playing with each other again, finally. They used to be good buds and then this cancer thing came along and flubbied up any semblance of routine we had. Then Lily turned evil 3 year old on pms and then Bella decided to do what 2 year olds do- imitate the 3 year old on PMS and I have been wondering why exactly I wanted kids in any capacity because on most days they seem pretty evil. Spiteful and demanding. They go around un picking up everything I pick up- dirtying anything that might resemble clean- creating noise where there could be silence.....Demanding juice, snacks, food, baths. Like that's my JOB...well it is- but I thought I was the boss for a second.

So they sneak away to play Barbies and I do what needs to be done- scrub toilets, do a few loads of laundry- snip some bushes out back that are getting overgrown and hence starting to die....you know fun stuff. Actually I did the yard stuff because it's delightfully windy and cool and I just wanted to be outside for a little while. And then they found me, and started throwing rocks. Not so delightful, that part. So I start sweeping the plant shards and rocks and Bella is dodging the flying debris- I guess playing Speed Racer on her Bike(she is the reason Don't Bike Naked bumper stickers are in existence- she just doesn't know it yet.) I make the 3rd round of food that Lily won't touch- and when Bella tries to eat it- war breaks out. It's exhausting.

We make it to afternoon. We walk to pick up the kids. Bella hops in and out of the stroller- driving me to the brink of insanity. Lily lets Nee nee fly in the wind- twice I end up chasing it down the street. The third time- it becomes mine. Screaming ensues. We make it to school. A freakishly tall fourth grader- who I'm pretty sure is like 12- comes up to chat with us. She always come up to chat with us. "What's wrong with him?" pointing to Lily. He is a she- and nothing is wrong with her. "Where's his(glare from me) her hair?" She has cancer- a medicine she is on makes her hair fall out. It'll grow back. "Is she gonna die?" Yes, everyone dies. "But is she gonna die sooner?" Sooner than what? I'm hoping we kill the cancer and she will be fine. "Oh. Hmm." And off she goes to beat the sense out of some poor 4th grade boy. Nice. And this is why I no longer go out in public. People stand in walmart staring at you with looks of confusion, or tears. Like it isn't difficult enough trying to get through walmart with the cancer patient. But then someone does or says something that reaffirms your sense of humanity. On our way out of clinic the other day Lily was going on and on about something or other- probably disowning me or disinviting me from her party. A soldier gets down on one knee and winks at her- "You have a nice haircut little lady". He then pulls off his cap and has a matching haircut.

Tumor Wars: Klaus Strikes Back -Plexiform Fibrohystiocytic Tumor or Neurothekeoma

I started the blog to keep family and friends informed. We've made some new friends along the way and have had many helping hands hold us and guide us in this crazy journey.

A few days ago I was contacted via this very blog by a couple in Boulder, Colorado. Interesting coincidence- me being a Buff grad and all. I hand Phil the message - huh small world he says as he looks down at his CU shirt and matching shorts. Their 5 year old son may have a fibrohistiocytic tumor (like the one in Lil's leg) but it may be a neurothekeoma. I assume that they are in the beginning of their journey and are awaiting diagnosis. That place sucks. I'm not sure I have the energy to be supportive, I don't know much about that tumor as Lily's was grossly overshadowed by the massive tumor in her belly.

I get to thinking, and the good old Catholic guilt settles in. Wasn't I just sitting in front of the computer a week ago searching for a happy ending to any of the adrenocortical carcinoma stories I had read? There's got to be more... it's unfair not to respond.

I make the call. And 20 minutes later I hang up and am back online redoing a couple of searches I hadn't looked at in months to see if I could help a new friend, who has already been on this journey for years- and still awaiting a final diagnosis. In January 2007, 3 year old Klaus's dentist noticed a 1.5 cm lesion on his gumline. He reccommended having it looked at by a surgeon. 3 months later the mass was removed and the pathology came back mixed. It could either be a cellular neurothekeoma or Plexiform Fibrohistiocytic lesion. Conflicting diagnoses come in from multiple pathologists. All follow up indicates the tumor is gone. By December 2007, there is yet another suspicious growth at the original site, it is excised. Months later there are swollen lymph nodes and a referral to Oncology. There is waiting, watching, worrying. Klaus' mom and dad start looking into second opinions, third opinions, fourth opinions or for someone who has any insight as to what's going on and how they should proceed. Klaus' mom, Tracy starts a routine of checking his lymphnodes and mouth for any changes. By January this year, Tracy notices another bump by where Klaus' original tumor was. The nodes are questionable too. The scans begin again, the waiting, the worrying. No one knows the best plan. Aggressive surgery to remove part of the bone in his jaw and surrounding lymph nodes is an option, but is it the best option? The family has travelled to St. Jude's, Johns Hopkins, and Beth Israel Medical Center to try and find answers. And then they found Lily's blog and mention of a similar tumor. They are looking for someone who has experience with this and the best way to help their son. So I offered to add a blog for them. If anyone has information that could help them, please contact them via email @ tntheiman@midairdesign.com

All for the smiles...

Yesterday
















was the last morning of chemo for this cycle. After a nap, Lily woke up hungry for chocolate chip cookies. Hmm. Of course- she hasn't wanted cookies in weeks so when I went to the commissary- I passed by the cookie dough-and kept going. So I tell her I don't have cookies. "You can make them" well- I couuuuuld..."pleeeeeeeeeeeease". Ferb- I know what we are going to do today. She likes to help. So I know there will be cleanup. But her counts are already dropping and I know she is going to want the beaters- how do I get around feeding a borderline immunocompromised patient uncooked dough? A little slight of hand and quick thinking. I cream the sugar and butter and transfer the beaters to another bowl- the rest is done by hand. SO no salmonella and beaters still get a good lickin. And the smiles make it worth it- really isn't that why we do anything?

Pull-Ups, Target, and more...oh yeah the Gremlin's home!

Usually Lily throws a big fit when she gets home. It's emotional and physical overload for her just to make the journey. Her poor little chemo wracked body. She's doing well so far. Some icky tummy issues, but she's hanging in there. There's also a new round of residents on and it was made abundantly clear to them- do not get her wet, do not feed her after midnight, and never, ever, wake a sleeping Lily. I was listening in on rounds one day- believe it or not it's an isolation room- not a sound proof booth. Much discussion revolved around- she was awake when I went in so...she was sleeping last night so I couldn't.... four months and they finally figured out- big picture- hours of Lily screaming vs. sleeping- which is the logical choice? There's a fine line between healing and torture as it is with chemo- let's err on the healing side and let the child sleep. Now our biggest concern is a Pullup that can hold the mess so she can sleep. I've done the field testing, formulated my hypothesis and last night moved on to kitchen trials. What I've experienced is that Goodnights work the best- and much thanks to all the pull up fairies who have supplied us with them- we have a stock pile now and it's awesome! Pampers Pull ups have a new nighttime version- that from what I can tell really only have a different design than the regular pull ups. They might hold slightly more- but when you have a kid being super hydrated IV like- it's negligible. If you have a child who rarely pees or you are anal about changing them every few minutes- the Sam's club brand is for you. We use those for Bella usually as she is supposed to be potty training and she doesn't go a whole lot. Funny story...we go to the zoo. It's a holiday we have to park in the far parking lot- not a big deal- it's few more blocks to the entrance. Lily is complaining she has to go potty- and knowing the nearest potty is blocks away, tell her go in your pull up! " I'm not wearing a pull up- I'm wearing underpants." Oh fudge.Of course you are wearing underwear. Ok, let's move people. MOMMY! Now it's Bella in true Peat and Repeat fashion- telling me that her tummy hurts. She wants her pull up off now and is really starting to freak out. I wonder if she might have ants in there or something. So I reach in her pants and unfasten the sides- as discreetly as possible and remove the offending undergarment without pulling her shorts off. Nope- not good enough- she kicks off her shorts and is standing there on the side of one of the busiest roads in Waikiki, half naked and starts to pee. She is watching it giggling and Kiera starts laughing- Phillip comes over, because who can resist a good laugh- I look up at Phil horrified and see him retreating from the picture laughing hysterically- so there is nothing left to do but laugh. Oh by the way she was still peeing, still peeing- now I have to laugh because - no wonder her tummy hurt- girlfriend had to GO! And kids this is why we do not pick things up off the ground and eat them. Speaking of eating- back to kitchen trials- Goodnights hold 6-700 mL before they overflow. The Pull ups barely hold 500 and if you turn them over they leak. The generic brand doesn't even hold 500 and it leaks. There you have it.

March 8th- Target's grand opening. I think for my birthday, I will spend the entire day wandering around Target. It'll never happen, but a girl can dream.

Poprocks

Lily is rolling into her 3rd day of treatment. Yesterday I get a text from Phil that lily pulled her port out in the playroom and they have to take it all the way out and replace it. I of course start stressing and making calls to find Bella a sitter and I can't get a hold of Phil. Finally I call the nurses station and they inform me she just pulled the access needle out, not the whole thingamajig but that was plenty traumatic for her. Apparently much screaming and disowning ensued. By the time I showered and got to the hospital both Phil and lily were resting from the event.

I stopped to get her candy on the way in. She frowns on my showing up empty handed. I grabbed some candy necklaces because she' borrowed' kieras and Kiera was nice enough to let her have it. Lily is happy to share though and its funny to see how the nurses wiggle out of it. And in true lily fashion, what she likes one day she hates the next so fortunately I also got her some poprocks too because they are fun. She downed 2 packs last night then demanded a bowl and spoon, dumping them into her mouth was too messy. Problematic too, I found out later when she dribbled water she was drinking and a poprock nearly shot my eye out. That and there was no sneaking around , the floor was littered with them. I had to make sure her bed was clear in case her pullup leaked, it might have launched her off the bed in a strawberry explosion!

Hopefully we'll go home later today.
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Kindred Spirits

We went to the zoo again yesterday. There are some fun museums for kids in the Honolulu area, but we wanted to keep germ exposure to a minimum. Plus the weather has been really nice. Lily had a moment with one of the chimps. Pooh meet Chimp, Chimp- Pooh. I think the Chimp is saying "Guuuurl that's a sharp haircut!" We had to shave it again this weekend. Phil had taken the other 3 shopping and Lily was relatively sedate- so I gave it a go with a razor blade. Not a nick at all, pfffew. We even painted her toes.

Today starts round 5. Phil will probably take her in after we get the kids to school. This past cycle has been relatively calm. I think she probably will be getting some blood this week though- she seems pretty anemic. But we shall see. It's time to get everyone up- you know how it goes- on Saturday everyone is bouncing around at five- school mornings they'd probably sleep til noon. Even Lily is still out, no worries Bella is always nearby to keep me company!

Little Valentines

10 years ago, Phil and I legally started this journey we call marriage. It has been a cliffhanger to say the least! But I wouldn't trade it for the world. Some are lucky in fortune, some are lucky in metabolism, me-I am lucky in love. I have to work at the rest!

Our son is a sweet boy. He has always been. Thursday night, he quietly comes to me and asks if he can make a special Valentine for someone. Of course I say, that's the point of the holiday. He asks if he can put money in it- after all that is what he likes to receive in cards. SO I taught him the first lesson of Valentines Day- it has to come from the heart- you can't just throw money at it. Of course we could have thrown money at it a week ago when we were shopping for the class Valentines, but now it's 8 pm on Thursday- now we get creative. What about making a bracelet with Kiera's beads? He sits down, works on 3 different variations of cards for a little girl named Lizzy. It is 9 before we get to the beads- do you have any letter beads? he asks me. I look- yep- but only 1 z- is she an Elizabeth? 'yeah- but nobody calls her that'- how about Liz- 'yeah that will work.' Off we go. I am all about simpler the better- he starts picking out this and that and I reccommend picking 3 bead types and going with that- It's finally done- we package it up in an envelope. I suggest not giving it to her in front of his friends. Sometimes boys can be mean. Dad suggests putting it in her mailcontainer at school. Right on Dad. We gently remind him the next morning to be discreet. I really don't want the guys givin him a hard time.

I get the text from Phil on the way home from picking the kids up from school 'she didn't like it. had a friend tell him'. I didn't plan on THAT contingincy- how could she NOT like it? I forgot HOW mean girls can be. As a mom, my heart breaks for him. I wonder exactly what kind of trollop this Lizzy is. And then I have a reality check- they're 9. It's the prime age for learning the social convention of cruelty. When he's married, he'll remember little Lizzy who broke his heart in the 4th grade. It's a tough lesson, but he'll be Ok. We gave him Dr. Pepper and let him watch the Incredible Hulk with us. That and Phil gave him a bag of really good chocolate- I look at him with question- he shrugged-'What? You said you didn't want crappy chocolate- that's all I had. The kid looked like he could use some chocolate. Don't worry there's more. ' God I love that man!

Ironically enough- this was an email I received earlier that day........

A Day in the Life....

Time to go to Clinic. I have Barbie, Cinderella, Ken"Prince Ali", Pooh, 2 pillows, Nee nee, none of which are in my backpack- which I have also brought. We have just dropped Bella off to play with Aunty Carrie n Ola. Now we will drive around forever looking for a parking spot at Tripler. It's a big day- I have clothes on.

We finally park and make it into Clinic. We get to sneak in the back way so I'm not exposed to all the sick kids in the peds waiting room. I know my way around. Mom only lets me walk around when I have clothes on- although everyone here seems to like my birthday suit- they always giggle when they see me.

This is the waiting room for special kids like me. No one who has a cough or bad germs can play in here. I like to play soccer with this ball out in the hall. Sometimes Dr. Kratovil or one of the nurses play with me. Today I brought my tap shoes to show everyone.

We check in with Ms. Florence who is always glad to see me.

Ms. Simone finds my new favorite song on her phone "All the Single Ladies" by Beyonce- Mommy sings it "All the single Lilies" She's so silly. I show them how my tap shoes work.

We go into the treatment room which has a big fluffy chair for long treatments like chemo or transfusions. I've logged a lot of time here. There's a scary chair on the other side of the room- where we do the pokes. I'm a big girl now and sit on mom's lap in the scary chair. I only scream a little while now- we're working on that.

When we're done, Ms. Florence takes my access needle out- sometimes that's as bad as getting it put in- it hurts when the tape comes off.

This is my favorite part- BEADS! I know which ones I get now- the black and white are the poke beads, they are VERY important to me. I get a blue for the clinic visit and silver for accessing my port- it counts as a dressing change because of the sticky tape!

On our way out, we stop by the vendor and I get a treat. Sometimes I pick donuts or candy- today I want a rice krispie treat. When I feel good, I pay by myself. Sometimes I get coinies back!

We usually run into someone we know. Everyone seems to remember my name- I usually can't remember theirs. Mama tries but her remembery isn't very good right now she says. Today we saw Ms. Julie! All that entertaining made me tired, it's time to go.

Scroll down and pause music if you want to listen to SNL Skit!