Waiting for Superpowers

I'm hopelessly behind on updates. So I'll try to be quick. I keep thinking I'll write a quick post or thought a day, but something pops up. The kids and I are doing these daily journal books- which are quick and fun and also give me an idea where we are all at emotionally. Kiera doesn't participate but helps clean and run errands- which gives me an idea where she's at.

Before Christmas, Phil and I met with the Radiation Oncologist re: the spots on my pelvis and spine. It is a bit hazy since it was the morning post adrenal crisis and Phil had to give me a second shot before I could roll myself out of bed.

He was great- I was a mess.  Phil asked the right questions, we looked at the images. Those always hit home. There was also a spot on my right pelvis that we wanted to consider scanning prior to treatment- in case it needed a zap. Scans are great, but really unless you biopsy-you don't know for sure what you are dealing with so you can watch and wait- if it walks like a tumor, talks like a tumor...

I wanted to discuss a few things with my oncologist, endocrinolgist and trusty mutants before setting a date. Then there is Phil's nebulous schedule and trying to plan. My nurse and oncologist opined that radiation was probably our best choice, it was too soon to rescan with PET though, so they would discuss timing with the rad onc while I contacted the endo. Between training days, holiday, chemo- this is a process and of course mid discussion with endo she drops the- I'm going on maternity leave bomb. sigh. She helps me calculate stress dosing and gives me the on call endo's name. I ask her politely to please fill him in on me. Of course. No seriously...I did come away with a decent- avoid crisis during chemo weeks plan and a window that would be better for rads.

So new Year's came and went. We headed into January chemo. It was the best time to settle the radiation decision- I was going to do it- just had to get up the nerve and time it. Fortunately it was super busy in the Bay and no one was particularly bothered to lecture me AND they put me back in the isolation area which-drumroll please-I had never even visited. It was just that busy. Phil tries to knock out some other things while we are there and found my Debbie friend in the abyss that is the pharmacy waiting room. I have a very short list of people allowed to sit with me. Many say they feel bad when they see people alone in the Bay- for some it's a time for meditation- as much as you can in a big room with 10 strangers all in varying degrees of discomfitude and everyone knows everyone's medical business. I also now know where they keep the snacks! And am grateful Deb got to share the time with me- it made a long day more enjoyable.

I keep my schedule open now the first 2 weeks after chemo. I find that emotional stress honestly pushes me towards crisis pretty quick and if I run around too much, well that doesn't help. There were 2 major events lined up for the Saturday, a paddle out memorial for a friend and a 1st Birthday celebration for a special little friend. Both events carried with them significant emotional balloons.  Then Thursday evening, the rad Onc calls and wants to schedule treatment which entails a planning CT, planning period then radiation. We were going to wait for the next PET, but overall- no time like the present? I scheduled the planning CT for Monday, not knowing how long the planning period would be and having already scheduled a Physical Therapy appointment. I explained that I wanted the treatment before chemo, but not during the crisis prone first 2 weeks after chemo, the other issue being my pesky platelets which are not rebounding at all. He mentioned planning could take an afternoon to a week depending on several factors. But his plan was to use IMRT- a more focused arc of radiation to avoid damage to surrounding tissue as much as possible. Very similar to gamma knife.

With short notice, I knew Phil's schedule might not be easily arranged and asked Kiera to skip school to drive me Monday. You'd think it was Christmas. Sweet girl. Germaphobe and all- I even told her she didn't have to come into the hospital with me, but she sat while I did PT and then even chatted later with the rad onc. She was a little put out that he over explained things- but I prefer that to the alternative. She was thrilled to watch HGTV in the waiting area- squeaky couch and all while I did my prep CT.

Now, we try to avoid radiation when possible. Radiation works by damaging cells- my mutant body doesn't clean up that damage as well as a non mutant's. So normally I'd fuss about all the CT's and stuff, but feel like we are on the same page and the info has been passed. I get a gown and robe and am instructed to strip waist down. I'm so used to waist up ops- I feel overdressed on top- bra, shirt, gown and robe. Truly grateful I wore a long shirt- feeling a bit breezy- but all's well. The tech takes me into the room, explains the process, how it will work today, why, how it will work for the actual treatment, why planning could take an hour or days....he was great. Theres a blue pad on the table- I lay down and he will squoosh it around my legs to make a mold- it helps to keep the pelvis and spine in the same position for treatment. I manage to gracefully lay down, keeping covered, he lays a blanket on me and proceeds to squoosh the mold. A couple minutes in he huffs like Dobby does when you won't share dinner with him. I apologize for being difficult- he says he's just not happy with the mold- would I mind trying again? I don't mind at all- I prefer them to have exactly what they need for the best result and I imagine these mold thingies are not cheap. I hop back up as he brings the next mold over and lift my legs so he can put it under. As I do this- a nice cool breeze reminds me I am commando. Oh Dear- I shove the gown between my legs and apologize- probably should have considered groundskeeping with pelvis anything- but I wasn't expecting commando and CT don't care if you shave. Then I realize the door is at the foot end- lucky no one walked in-and right above the door is the closed circuit camera. Yay- my first naughty tape- of course it would involve a scanner of some sort. boom chicka wow wow- I didn't order any contrast....

Anyways- Cts are fairly easy peasy and quick- you know if you have ativan on board and have gotten past the genetic assault about to occur- it was the set up and the markings that take time- I got four stickers(one on each hip, one on my belly and one apparently that was hidden in my c-section-hysterectomy scars- how embarrassing?) to wear home and the tech said they would shoot for Monday or Friday of next week but he'd call once planning was done to confirm. Needless to say- I was surprised when he called the Tuesday afternoon as I was picking Bella up from school. He said the planning was done- which I guess is good- no surprises  and I could come in tomorrow or any day this week if it was better. ARGH. I hate the the ball is rolling too fast now feeling. hurry up wait hurry up wait. I let him know I have to check Phil's schedule and that would really set the day. They are way easy going in the rad onc clinic. It's a bit creepy at times. He said just give him a call- if we can do tomorrow great- they had everything they needed so it was when worked best for us.

Phil was flying Tuesday, I knew I wouldn't hear from him until later, so I texted him the deets and was surprised after he landed when he responded Wed. works best. Wed. as in tomorrow. Ok- let's do this. I kinda wrote off the evening. Spend an hour boo hooing on the phone with my friend Trish and had the kids make themselves dinner. Phil got home. We decompressed. He slept. I laid there performing great mental gymnastics- olympic level shit. Enough that by 3am I wasn't sure if I was in full on panic attack or adrenal crisis. It's one of those things- You can talk yourself up, down, around, in between. You can relate it to experiences and know you've come out fine. And you also know shit happens. Radiation was awful for my dad, it killed my grandfather. Neither would have survived their tumors- but the rads made it worse. I know so many who struggle from the after effects. The plan is one dose and done. Higher dose, but more precise, hopefully less damage. I was terrified of gamma knife- it wasn't easy but comparatively an easier way and not too tough to tolerate. The whole brain surgery swelling mopping up later are the after effects I speak of. And I've been really lucky there too. The PTSD is there. You just deal. Sometimes with big doses of antianxiety meds when the oils and the pacing and stretching all fail.

So I woke Phil up, he held me on yet another ledge until the ledge ebbed away and I slept for like an hour until the girls came in to say goodbye and I had to shower. Everything went really smoothly today. As planned. Got there- got set up- got irradiated- didn't feel a thing. They did give me 3 tattoo

dots as markers "in case"- I asked if she could do an elephant- she said no. Plus the stupid low platelet thing made them bleed and she was not down with that. I hope the recovery will be unremarkable. Everyone says I should tolerate it very well, as it was just a single dose and radiation effects tend to be cumulative. I had a great ativan nap when we got home and Phil made a delish dinner and now it's time to decompress.

This blog brought to you from my quiet space.... ha ha ha ha- but they are very sweet if not conducive to my writing. Oh my God- I almost forgot the best thing- we got a parking pass to park in a radiation therapy spot today! And there was a spot- and we parked in it! Sometimes its the small things. Now I have to wait for my mutant superpowers to reveal themselves!

Insufficient Breaks

Ah Life. The ups. The downs. The more downs.

Lily was looking for pictures the other day and stumbled across the blog. She read quite a few and we sat and talked. She had lots of questions, she didn't remember a lot. Part of the reason I started blogging was a journal-now reading back- I don't remember a lot and then the words crash around me. It's not easy. We've kinda dealt with a lot of shit. It's been tough to write lately- finding time, emotional energy and not be negative. Although as a good friend reminded me- you can feel the toughness and you don't have to be happy about it. Happy about it has been elusive.

Lily is doing the best of all of us right now. She and Kiera remind me a lot of me at those ages. Bella is truly a unique creature and dealing with being 11. Being 11 kinda sucks- in case you hadn't heard- she will tell you. The snark is strong with that one. Lily reads and reads and reads. real books. she prefers them to the kindle or electronic versions. I understand. She says she just likes the feel of the book and turning the page. We visit the library, a lot. She has friends at school and seems to be really happy.

Kiera is struggling with the challenges of the IB program as well as the time requirements for dance. It is so different than where we were with Phillip at this point. She is realistic and although she loves to dance- she does not think she wants to make a career of it. I just hope she will continue to dance, she would like to start a club at school. She is talking about withdrawing from classes after their Nutcracker performance. She really stepped up and became the little mommy for us last year, I really can't argue with her wanting just to have time to be a teen.

Bella is 11. not a little girl - not a woman- plain ol trying to figure things out. We just extricated Lily from this awkward place- or she grew out of it- so we apply miracle grow and hope for the best. Tomorrow is her arm MRI- finally-hoping to rule out some of the anxiety around that thing.

Dobby is like having a toddler. He eats things he shouldn't, poops where he shouldn't and needs lots of attention. Of course everyone gives him attention in their own way and that amounts to several hours of circus dog training for him each day. I walk him a bunch which is good for me physically and emotionally and he enjoys quiet naps in the sun while the kids are at school.

My sweet Phillip. He turned 18. And magically did not instantaneously gain the wisdom of life that adulthood promises. After being in a relationship for a year, young Romeo and Juliet were told they could no longer see each other. Although I don't agree with how many things have been handled, we absolutely respect her family's wishes. We lost part of Phillip last year, I thought it was me, I remember all too well being surrounded by sickness my senior year. I practically lived at Phil's house that year,  But it wasn't about me. Phillip was in love. All focus was lost, he started to lose himself in the relationship. His grades were the first indication, then he didn't apply to some colleges we had talked about, he stopped talking to us, he wasn't careful with his blood sugars- which made him angry, a lot.  He was going through a pretty normal thing with a bunch of not normal. We were trying to cope with a pretty normal thing with a bunch of not normal. Just when I'd see glimpses of him and think he was moving on, he'd slide back. My poor child - cursed with his father's loyalty and my passion for saving lost causes.  Oh to be able to share the insight on that and have him hear me.

Parenting is not for the weak. You lay the foundation and just pray it holds. I wish I could prevent him from heartache, but these are the experiences that break the heart wide open. With the right healing- the capacity for love will be even greater.

My adrenal glands just aren't recovering. I try to manage physical and emotional stress the best I can(I have a new dragon egg smelly thing- as the kids call it- a diffuser for relaxing oils)- we are the opposite of relaxing- even on our most laid back day. The night after my last chemo- I went into adrenal crisis.

I thought it was a headache. Which stresses me out- it could be the weather, it could be the stress- it could be more. So I retreated to my room with oils, tylenol, and ice pack then a heating pad. Within minutes the rest of the available Mallorys were sitting around, playing with Dobby, rubbing my feet. Everyone knew something was up. My stomach started hurting- again catch 22 stress- then the vomiting began. I tried zofran, I tried heavy steroids, everything came back up. I felt horrible. Phil decided I was not in fact contagious and needed the shot. He tried to take my puke bucket away. I cursed him- I think it would have made a great remake for the Exorcist. He finally gave me the shot, and we headed to the ER.

Of course the ER didn't know what to do with me, we enlightened them. It was slow going. The shot kicked in- iv zofran was lovely and fluids helped. I upped the steroids the next few days and then wean back to my regular dose. The dose changes are always tough emotionally. And life goes on and I make dinner because Phil has extra work to make up for the unintended day off. It's a reminder to take better care of myself for everyone's sake and well adrenal crisis really really fricking sucks.

My adrenals are quitting, my platelets aren't bouncing back- nothing transfusion worthy- just bloody noses and bruises. Like anything- I know so many who are far worse off- so I dare not complain. But my gut says we need to strengthen my body again. So after meeting with my oncologist and some thinking- we are holding chemo- the idea was until we do a PET scan. IF there is no progression, or evidence of active disease- we can evaluate and come up with a balance. But of course the PET is not available until the week after Thanksgiving- which would mean skipping 2 treatments. No one knows the right call. SO it's mine. Choose your own adventure cancer style.

SO I go with what I know versus what I wish. I know that I have aggressive cancer that keeps trying to find a way to thrive. I wish No evidence of disease meant I didn't have to worry- I will always have to worry- it's just at what level. I know it could be worse. I wish it was easier. I know I am tired. I wish I wasn't. I know that chemo is keeping the cancer at bay. I wish it didn't damage the other systems in the process. It's time to mitigate damage before it's too late, while not letting the cancer get ahead and this is what managed care is. It's not a cure. Other things go wrong, you have to roll with it and hope to keep ahead of all the bad things. And sometimes you just need a break.

So I will probably head to chemo next week and pound steroids like a world champion cyclist. Thankful for a little break, help the kids with the big ones, wait for the PET and hope for the best.

Choking

Lily started Middle School. She's been so excited to be at her own school. She doesn't even mind that some of her teachers remember her siblings. A tough teacher that Phillip and Kiera both struggled with, will probably end up being Lily's favorite teacher ever. They all have such different personalities and learning styles.

The first week back to school was pretty crazy. Of course I had chemo on Monday- so really sent Lily  off to her first day of 7th grade with a lot of faith. She rode her skateboard with a friend. I hadn't prepared my usual pack of information that I deliver to the health room. I felt horrible about it- a new school- they'll never have heard of adrenal insufficiency. The public health nurse took care of Phillip and worked with me over the summer to get some of the items taken care of. In the past - it was usually January before anything was set so part of me decided- what's the rush? Plus I can't even take in the meds until the proper paperwork was filed and rarely was this ever done in the first week of school. For either child.

When I called the health room, the bubbly aide seemed surprised she hadn't met me yet or had Lily's meds- she had already treated several kids that morning. Of course Lily's counselor and the skilled nurse would be in contact with me. I let her know Lily had an audiology appointment on Wednesday and I'd pick her up early and bring the meds then. She said she would make sure the counselor and skilled nurse knew. That was - a bit easy. Ok.

I got the packet of information together- it includes Lily's AI information, all the doctors and emergency numbers- when she needs meds, background on adrenal insufficiency and instructions on how to give the injection. Each year I usually just have to update her picture- this year I had to update- med amounts, and all of her docs and emergency numbers.

I went into the health room, I felt very comfortable she knew who both Lily and I were( check 1) - we chatted, she then took me to meet Lily's counselor who had done his research. Lily mentioned he introduced himself on Monday and showed her his office and they talked about her health and how she handles things. I'm sure he knows more than he expected about a lot of things! This put my mind at ease(check 2)  - Lily is fairly independent with her health- but due to the nature of emergency shots- that is something she just has to have back up on.

So far I'm impressed with her counselor and his interest in Lily's care. Of all the things we have on our plate- it's nice to have another person on the team. He also totally understands we want her to be treated "normally" in all other respects. I warned him that she will visit him or the health aide on chemo weeks- he understood. She really does take personal responsibility for me- it is so sweet and makes me so sad at the same time. All the kids are to get themselves ready for school, pack lunches, etc. on their own. If I'm not awake(some nights are better than others) she will come in and hug me. She's also started leaving notes on the kitchen counter like Phil used to do. I love it so much I can't even describe the feeling.

The week was busy- there were many papers to sign, things to get in order. One day I had the foresight to throw kalua pig in the crock pot. We were home lateish and I was shredding the pig. As I normally do, I tested a piece. The piece lodged itself in my throat. Not the route to the stomach throat. Of course trying to take a deep breath made it worse. I tried pushing myself over the counter chairs- they are too high- I look around while trying to self heimlich. Lily sees me stuggling and runs over- all I hear is what do I DO? What do I DO? I point upstairs- Phil is in the shower- other than that we are alone. I run over to the sink and hurl myself at the edge- evicting the anti breathing wad of slightly dry pork.

I'm shaking pretty bad- not thinking the knees will hold. I sit down, Lily wraps her arms around me. God I hate this. She's crying- I'm so sorry I didn't know what to do. I laugh- she's apologizing- sweetie- you did great.  We talk about choking and how to do the heimlich. Girlfriend can apply first aid to broken bones, sprains, knows the ups and downs of blood sugars and how to inject glucagon or hydrocortisone- I guess we've never covered choking. Kiera used to choke all the time- did the baby heimlich on that one more times than I'd like to remember- and on all of them at some point. But it hasn't been a problem lately. I leave dinner sitting and go sit out back.

Phil comes out- Lily said you were choking. Yeah. Ok? Yeah. You want dinner? Everything is screaming nooooooo- my throat burns, my head throbs- but with the stress- I should probably take hydrocortisone to help my body deal and I have to take it with food. So I eat carefully and laugh- I tell the kids all the time- we've worked so hard to keep you alive- I would hate for you to go down doing something stupid. I tell Phil and Lily- I would hate to have gone through all this to stay alive and then die by choking on kalua pig. We laugh- when the others get home, we go over the Heimlich with all of them. Lily sits closer to me now, she holds my hand more. Like we need one more reminder of how quickly everything can change. Yet somehow we do. We hug more. We love more. We argue and work things out, more. When the monkey has one day notice to play basketball- you say yes, more.

Dealing with Discrimination In the Hawaii Public School System

Two days ago, a quick search on the KeoneUla school website for a copy of the school supply list turned into a veritable shitstorm. I could not find the list. What I did find was an announcement tucked away in the bottom of the page about school rezoning that will take place. As of next year, Lily and Bella would not be allowed to continue at the school they are at, despite a grandfather clause issued 2 years ago allowing them to start and complete through 6th grade there. When the initial anger subsided, I realized despite the fact the school has new facilities- they are not taking advantage of them. The administration is noncommunicative, narrowminded and at times rude. It is not a school that I wish to continue to fight for. I volunteered over 20 hours last year, often with Bella at my side assembling binder folders. Not helping kids read, do math, science or social studies, or teachers with menial tasks to save them time- but squirreled away in a room gluing and taping folders together to put in binders- despite the 8 administrative assistants that "greet" you in the office. And by greet I mean look at you when you walk in. I was done. I was ready to pull my kids. I went into the office and was greeted and asked admin assistant #1 if she knew anything about the rezoning. She did not. Of course not- the employees of the school have no worries about their kids or neighbors kids who they carpool in with being excluded. I spoke with the Vice principal who did not have details but said they were not really giving geographic exemptions out to stay in the school. So I have to figure out how to get 4 kids to 3 different schools within a 10 minute period next year- nice. Not gonna happen. I take 3 GE forms. Not to stay in that school, but to apply to a school we went to years ago before this school was built.

I call the Principal at the new school- leave a message and send an email. I let her know Lily needed medication and our situation and inquired about availability. Within hours she had called me back and sent an email- there were exactly 3 positions open in the grades I needed.  I sighed relief.  But it was only the calm before the storm. I got a call from our Public health nurse that afternoon regarding the new policy for Lily's medications at school. They wanted to schedule a meeting for 9am the next day- could I make it on short notice? It looks like I don't have a choice if I would like to get Lily in school for Monday and once again Phil can't be there because he is TDY.

Last May- the very last week of school I receive a letter that explains the change in Department of Education Policy for storage and administration of medications at school. I went into the office to see how I could proactively get this settled before the new school year. I was told to talk with my child's counselor- I did and I left a message- but technically no one could do anything until they went back to work at the end of July. So I was on hold.

The new policy only allows for epi pens, glucagon and inhalers to be administered at school. Yes diabetes, allergies, and asthma are the most common medical conditions in the public school population, but they are far from the only medical needs. Health Aides are now DOE employees, not Department of Health employees. They take a course, they can administer the 3 meds listed, they cannot assess any child's condition(which is utterly ridiculous- because in order to give any of the 3 listed meds- a precise assessment and evaluation needs to be performed). Only Licensed nurses can give meds, but the policy doesn't allow other meds to be kept at school. Each Complex(similar to mainland school districts) has 1 school with a school nurse. Therefore the DOE is saying that any child who may need medication other than the 3 listed, IF they approve the medication- which now can ONLY be done by procuring a 504 plan- that child with special medical needs can ONLY go to the ONE school in the complex that has a nurse. So on the very day I learn that my kids will only be allowed to go to the school they are at this year, I learn that Lily may only be allowed to go to one school in the district and believe me not all schools are created equal. I start formulating my remarks for Lily's 504 needs evaluation the next morning- knowing full well that the school adminstrator who neither respects me or my children has the power to fight for us and she will not. My only hope is that the principal of the new school was was welcoming and accomodating and willing to work with us on Lily's special needs, will.

My stomach is in knots. We fought and continue to fight to keep her alive. The life expectancy for a kiddo with her tumor is 25 months to 5 years. I ignore that. I plan life like she is a normal kid and has a normal life expectancy, otherwise you go crazy. She is on medication she will be on for the rest of her life, that is her normal and we treat it as such. In the case of an emergency, she needs extra medication or she will die. I am trying to give all my children the best oppotunities I can with the resources at my disposal. Making people aware of her condition is for her safety, I do not want her treated differerent on a daily basis. I give her Hydrocortisone daily at home. She does not require daily meds to be given at school. She is bright, meets all but one proficiency level and that one is the ability to show numbers in a variety of ways. I laugh because for Lily- it's her way or the highway, so that totally makes sense. But IF she gets a fever, starts vomiting, has diarrhea or a traumatic injury- her body will not produce the extra hydrocortisone it needs to sustain life function. That medication has to be given in that situation. Reference last May's hospitalization due to the flu.

My neighbor coerces her husband to prevent our collective 6 children from harming themselves or their worldly possessions and she comes along to the meeting as Lily's emergency contact and my transcriptionist. We join the meeting- the principal, counselor, student services coordinator and public health nurse I have worked with before. There are 3 other representatives from the district there as well. We begin discussion about Lily's condition and her needs. They are simple in my eyes, she needs medication at school for the case of emergency. She needs someone to give her the medication in the case of an emergency. And that is where the simplicity ends. It is repeatedly reiterated by the principal that the new policy will not allow anyone to administer this medication. Um yeah- that's why we are in this meeting to evaluate if a 504 plan can help and if Lily is eligible for it. Fortunately I wasn't the only one in the room who was under that impression as the District ladies suggest doing the formal eligibility paperwork before we discuss anything further.  Since Lily had cancer and her current medical need for emergency medication is life threatening, she qualifies for a 504 plan. I knew this because after she was denied eligibility last year, I did my research and found out that they should not have denied her. I was much better prepared this go around- chalk another one up to experience being a great teacher. I did not appeal that decision last year because the plan was worked out and the school agreed to keep her meds and the health aide agreed to administer them.

Now comes the tricky part- deciding which accomodations we are asking for under the 504 plan. We can ask for whatever, but the final decision lies in the hands of the DOE and they can refuse it or accomodate in a way they see fit. To me it is clear cut- I want her meds kept at school and I want to be reasonably assured that someone would give them to her if the emergency occurred. I know that under the current policy the health aide cannot be required to. But the good samaritan law protects any volunteer who would rise to the occasion and save my child's life in the unplannable event that there is an emergency. I would hope that at a minimum someone would be able to call 911 and let them know Lily's condition and even though they cannot dispense her medication- at least have it on hand to know what she needs. I have 3 doctors letters explaining the condition and the necessity of the medication in different ways so that everyone could understand it. I show them the emergency kit I have prepared, with the shot, the pills and the index card with step by step pictures how to administer it provided by the NIH. I show them the Emergency care plan that I prepared for all Lily's teachers, the health aide and staff last year- it has her picture, her condition, all of our emergency contact numbers and a 6 box table that states: if you see this(fever, diarrhea, vomiting, etc) Lily needs this(pills, injection, 911). And I plead with them. All I want to know is that some concerned staff member would take resonable steps in an emergency to help my child live. I have worked too hard to keep her alive for her to get sick or die when it can be avoided. Accidents happen, kids pass out and sometime preexisting conditions are found after it's too late. Everyone always says- if we had only known. Well in Lily's case we know and it can be avoided. I find it hard to believe that in a school with 80 some employees- not one person would be willing to volunteer to save her, that they would stand idly by with hands bound by policy or administration and watch a child die when life saving medication is at their disposal. If that is truly the case- this is not an institution any child is safe in. The principal points out that an accomodation should be made to allow Lily to make up school work due to absences. The DOE employees are incredulous-that isn't the policy at your school already? I get a wink from panel member. Right on, I am not crazy in thinking that was a stupid policy. But then again, I'm beginning to think I have yet to find a policy I like.

The meeting takes the ugly turn. Debate over how the policy is written ensues. I point out it does not state that no one can volunteer to give meds. The principal says she would not allow anyone to volunteer. You would not allow someone to volunteer to save a child's life when you know what they need and have it on hand? I would not allow it, she says. Let- me -be- clear- on -this. If the DOE ALLOWS her medication to be kept at school and she is laying passed out at your feet and someone volunteers to give her life saving medication- you would NOT allow them? I would not allow them, she said. In the collective silence of  the room you could hear both my heart break and the angry lava start to spill out as my neighbor shook her head and mouthed- it's over.  Nope- It is just beginning.

The principal has the audacity to continue about how at her school it is always safety first and that since they cannot meet Lily's safety needs, perhaps we need to have her go to Ewa Beach where they have a nurse. I hope to God no child ever passes out or is severely injured at her school because she would not allow them to be helped. Unless of course she would just not help Lily because of her condition, but that wouldn't be possible because that would be discrimination and that is not allowed. There are policies against that.  And if she truly would only act in that way because of policy then the policy itself is discriminatory by nature and also wrong. The panel would like to discuss what we do about Lily. She cannot start school at Keoneula Monday because a plan is not in place and the next 2 "work" days are furloughs. Someone points out that I should discuss it with the principal in private. I agree, that would be a better opportunity to have her sign the GE because even IF they met Lily's needs- I would not allow my children to stay at that school under her watch. That is no longer an option.

I step into her office, tell her I called Iroquois Point and they have spots available and could she please sign the GEs for my children. She bumbles around not knowing where to sign saying oh, IP is a good school, they are IB too. She tells me that she is sorry. I already knew that.

Long Term Effects Of Cancer

A friend just posted a quick note about seeing a mom with a lil cancer fighter on her lap at a school event.  I am not surprised by my reactions, yet they always surprise me. It was equal parts saddness, nausea and relief. I am sad that any child, any family has to go through it- it is not fair. Sad because I know how serious it is and if the disease doesn't kill them, the treatment might. I was nauseous because it's still fresh enough that I remember the stress, the day to day ups and downs and the gut wrenching emotions that you shove to the side just so you can get through.  I feel a bit guilty to admit that I was relieved. Relieved that the memories that sting now are just that- memories. I actually don't think about the what if's too much. Just enough to formulate a basic survival plan- but the thoughts themselves are toxic. 

When people we haven't seen in awhile run across us- the first thing they ask is - How's Lily? Lily is fine- it's the rest of us you should worry about.  I see friends with their out of control children- hopped up on psychotropic meds for behavior problems.  They are searching for answers in all the wrong places.  I think back to a time when I had to choose the lesser of two evils- taking the chance on cancer killing her or the chemo meds and their long term effects. One drug causes deafness, the other heart deterioration, the other can cause secondary cancers, the alternative- death. Not much of a choice. Yet I know parents who have their kids on cocktails of meds because they won't sit still or listen to them. We won't mention how the protocol for treatment requires CT scans every three months and by nature of our genetic mutation- the radiation from the CT should be avoided if at all possible.  Catch 22 much? 

I asked the doc once about long term affects(effects?) potAto pOtato. His response in a nutshell included the pearlly wisdomous bite- not many kids with this tumor type survive long enough to gather data on the long term effects- there will probably be some.  SO when you look at it all big picture-style- you come away being grateful for the imperfect package you have been given- because some people don't get a package at all and you know darn well far too many get awesome deals and don't even appreciate it.

 I sit here watching Lily play Barbies- Currently Barbie is getting ready to invite Ken to her Birthday party. They will fawn over each other, they will dance and then they will kiss.  Her Barbies seem to do that a lot. I started to worry. Is it hormones, should I get her checked- is she having changes?  And then I thought about it- when I was 5. And 6, and 7- Barbie and Ken(which often times was substituted with a GI Joe doll or a more appropriately sized A-team type doll) I re enacted their wedding scene over and over and over. I saved for months to get Crystal Barbie. Her dress looked just like an iridescent shimmery wedding gown. They would wed- go to sleep and in the morning Barbie would have a baby. For awhile it was a mini Baby doll and then finally I procured a miniature baby out of a gumball machine. Really- how important is scale in make-believe land? The point is- she's playing normal and despite my first instinct to over react- I take a minute and realize we are on an appropriate course.

Sure she can be rambunctious. And she can be manic. And she tends toward roid rage at times. But I remember Lily was a less than happy baby with rage tendencies.  Everyone else thought  she was so darn cute and happy, I consider the fact that maybe it's just her personality.  Yep- we called her Bi-polar baby. I admit it.  But there is no way of knowing the cause. I don't even know if it's that important- if I spend less time worrying about a cause I had no control over and spend more time teaching, mentoring, and behavior modifying- the result should be a functional bipolar child. We spent all this time worrying about her being normal, acting appropriately, and fitting in when it occurs to me- all 5 year olds are Bipolar. They are ADD. They are ADHD and oppositional defiant. They talk to people no one else can see, or hear. The have intense moments of rage and/or depression over trivial items.  And they totally sing off key. Lily's missing the higher frequencies of hearing- what are the other kids' excuses? By all counts- not only would they get booted from American Idol in the first round- according to the DSM IV they should all be locked up in maximum security psychiatic facilities for observation. I don't think the kids are getting crazier- I think we are.

The daily reminders of our year long vacation at cancer camp have become routine. It is more like brushing teeth now. They're about as painful too. Lily- did you put your hearing aids in? Lily ,did you hear me? PUT YOUR HEARING AIDS IN! Even the kids chime in- what are you, deaf? Everyone laughs. Especially Lily.  Just like we laugh at  Kiera's weird thumbs and Bella's ginormous butt and Phillip's abnormally long torso. None of these things can be helped, they are who they are and at some point in their life someone will point it out. Now they can laugh at it and move on. It's not so much about making your kids perfect- it's about helping them love their imperfections. Do I love my big butt- well not always- but I found me a man who does....and that my friends is how you deal the cards you are given.

Everyday Lily takes her meds and I have to prepare her school and our friends for emergencies. I didn't think about her playing soccer and the can of worms it opened regarding potential injury. Not only can she not wear her medic alert bracelet at the game- she might actually get hurt. Her coach works 3 jobs and coaches 2 teams- so practice has been less than consistent. Before I know it, we are to our first game and I never told anyone that she is adrenal insufficient. No one knows what it means and it's a bit of a pain to explain and when you start mentioning unconsciousness and shots- people get all wonky. I tackle the conversation with the team mom and she is very supportive. I never plan on sending Lily to a practice or game without my being there, so it's not a problem. Until her first game. Which fell on our anniversary.  We are going to be on the other side of the island. I have all the ducks in a row, everything is in place. I nervously text our sitter every 5 minutes during the game. All is well- she did great- she scored 3 goals and had fun. When I get home, we watch the 13 seconds of video from the game. It's not a lot- but I rank care and keeping of the magical creatures over photographic evidence- and all were cared for very well. I notice that she skips up and down the field. I laugh- because that's Lily. La de da. I show Phil. Yeah-he says- I noticed that at practice too. I wondered if she would have any long term effects from the leg surgery- but she adapts well. 

It hits me suddenly, I hadn't even thought of that. I am overcome by the familiar feeling of saddness, nausea, and relief.  I hadn't attributed the skipping to her leg surgery. I just figured it was her. Maybe it is.

Well Burst my big fat Normal Bubble....

I can't believe Lily has been in school for 2 whole weeks. It makes no sense because my house is still a mess, my laundry is still unfolded and I definitely don't feel rested. Maybe next week will be the week.

The first week of school was a riot. Lily was excited every day and we established a routine, which is paramount for the lil monkey. We get up, get dressed, eat breakfast, brush hair and teeth and walk to school. In that order. Every day.  Since Phil is off this week, he's been trying to give me a break and get the kids off to school. Let's see, today is Thursday. He got up this morning, instructed me not to wake up and locked the door so the lil ones couldn't wake me.  About 20 minutes later I hear whimpering outside my door.  "mom!" comes a soft whisper in between whimpers. It's Lily. I am guessing dad broke routine. She does not do well with broken routine. I was hoping that school would ease her into accepting change.  I open the door to a tear streaked face and a great big afro. Oh Lily. " Dad did my hair wrong" another tear trickles down. She was instructed not to bother me, so she knows what will happen if she is discovered- but to her, the norm is worth it.  I spray some Leave in conditioner in and scrunch it back down.  She grins and skips off.  I meet her downstairs. I instruct Phil that once the hair is combed out, it needs to be scrunched down.  He shakes his head, I can do that! Unfortunately Lily's communication breaks down when she needs it the most.

The first day of school was uneventful. I went in early to give her teacher a little light reading about adrenal insufficiency and what to do in an emergency. I had an identical packet for the health room with a form that was signed to allow Lily to keep her emergency meds at school. I drop both off and let both know I don't expect any problems, these are just in case of an emergency.   I get home to a call from the Public health nurse who informs me that Lily's meds can't be kept at school because they are not on the formulary. I of course, in the least sarcastic tone I can muster- ask what we need to do to get them on the formulary because she needs the meds in case of an emergency. She suggested calling Lily's doctor and confirming if she actually needs them at school and get back to her. Seriously. I am pretty sure Lily's doctor thinks she needs them at school because she filled out the DOE HRS form 36 which requests the storage and administration of meds at school and pretty clearly stated the need. But I make the call. I speak with a nurse I trust at Tripler and she emphasizes the need for the meds at school. She enlightens me to some of the red tape I will have to deal with and gives me a couple buzz words which will be the scissors needed to cut through said tape.  I call the PH nurse back. She is a very nice woman, but I definitely get the feel that the first response is always to deflect then consider. She gives me the number of a doctor on the board who will have to approve the change in formulary and requests my doctor speak with her. I immediately make the call to the board doctor and leave the message with all pertinent information.  The next day is Friday, I want this ball rolling fast enough to get through the weekend- otherwise it will get lost.

My phone beeps- it's a reminder for an appointment with Lily's endocrinologist the next day. Talk about impeccable timing. As I was reading the fine print on the form 36, I stumble across the need for all meds to be marked with FOR SCHOOL USE. Oops. That can be fixed.  I then put the phone down and it rings, it's the school health aid, they cannot store the meds and I need to pick them up. I tell them I will get them after school. I spend the rest of the afternoon assembling another packet of information on adrenal insufficiency, including all the details of why it is necessary to have meds on hand. I'm not sure who will need this packet, but I am pretty sure it will be needed. 

I pick Lily up and she is beaming. She loves school and her teacher and her friends. I make sure her teacher knows there will be no meds at school until we figure the paperwork out and to call me if she has any concerns about Lily's health. I don't expect any problems and I want her to be treated normal, but in case of an emergency she has special needs. Lily's teacher is mild mannered and experienced and the perfect lady for the job.

The next day I let the kids know that I will pick them up directly from school to go to Lily's doctor's appointment. I am catching up with laundry when the phone rings. My heart sinks, it's the school number. "Hi Mrs. Mallory, we have Lily here in the healthroom."  Oh god, murphy's law. "It seems that one of Lily's classmates accidentally stabbed her in the hand with a pencil, it's a little deep but I cleaned it out. She would like to go back to class. "  Ok, great. I see how this year is going to go. I might have flipped out. I might have panicked, I might have demanded to know what kind of child stabs another child with a pencil, but instead I said- Ok send her back to class. My first thought was- karma. A week prior, Lily was practicing writing her name and Bella leaned over to see. Lily went to push her away and managed to jab Bella in the face with her pencil. I spent 30 minutes cleaning the wound.  At least Lily's was on her hand. When I called her dad to let him know how her 2nd day of school was going, he said- Karma. Later when Lily showed our neighbor, who was consulted in the face wound cleaning adequacy- she too said it- karma. I would have to say, I have not seen Lily swinging aorund a pencil since then. She also tends to favor crayons and markers these days too.


After a few more days of back and forth about meds, the PH nurse finally got the approval for the pills to be kept at school. Apparently Lily's doctor was a very nice lady who was adamant that Lily have meds accessible at school- duh. The biggest thing was that Lily's doctor was also adamant that an emergency injection also be kept at school. This was a problem for the school  because there is no one at the school qualified or willing to give the shot if necessary. So now we had to have a formal meeting to discuss the emergency procedures and options. The reccommended option was to put her on a 504 plan which would label her as being disabled- despite assurances that no labelling would officially occur- sha ok- so that she could have an injection at school. So much for normal.

Day 3 at school, I get another call, from the health aide. I don't think my nerves can handle this. "Hi Mrs. Mallory, we have Lily here in the healthroom."  Before I can stop it from escaping "what happened?"  "Oh it's not bad, her slipper broke and we don't have and spares."  Ok I'll be right there. I grab the first pair of shoes I see and Bella and I are off to deliver. This is one of many reasons I wanted to be close to their school. The next day we have a parent meeting, the day after that we have Lily's emergency procedure meeting. If I had any doubts about them knowing who I was on campus, they are gone.  The meeting went well. As Phil put it- it's not a big deal, the injection- tell em to just watch Pulp Fiction. And yet I find that highly amusing.  Darn it I forgot to put the purple sharpie in her emergency kit.  Anyhow. They agreed to keep the shot at school, even though they don't have anyone to administer it and they will call 911 in any situation they can not get a hold of me or Phil. It's not ideal, but the bases are covered and all necessary parties are aware of her condition and prepared to call 911 if there is any question. At least my packet came in handy. It seems to make more sense to have a nurse on hand, but that is not the world we live in. That would require a 504 plan and they think that's not the best fit option. I could throw a fit and demand they hire a nurse, but that would really pop Lily's normal bubble- so we are going with the hopes that her guardian angels are working overtime and we won't have any problems. SO far she is unaware of any of these shenanigans, which after all makes me successful as a parent at least in this moment. And on another positive side- I get bumped up to automatic chaperone for any of her class field trips. It's official- they put it on the form and everything.

The rock is out.

The rock was successfully removed along with Lily's adrenal gland this morning. Around 11:30 Dr. E brought a covered bucket by the waiting room and in typical Connolly/Mallory fashion- we jumped up to see the thing that has caused so much distress. I'm not much of a fisher, don't care to eat them, smell them or see them- but I get the "I once caught a fish this big..." jokes. For us it is now- " I once saw a tumor this big.." and I hope it will be the last I have to see. It was about the size of a softball and I'm sure by tomorrow it could very well be the size of a watermelon...but 8 centimeters was definitely a guess on the small side. She got to keep her kidney and her liver. She is a true champ. She has about a 6 inch incision on her right side about an inch above her belly button along her ribcage. The lump in her leg also came out and Dr. E had no guesses as to what it was. But from what I hear guys dig scars- so she's got two good battle wounds. I will give the gory details down the road so I don't start blubbering in front of the kind nurses who let me sneak onto the internet... She will be in the ICU for a day or two and then a few more days in the peds unit. We are hopeful that Dr. E got all of it- it looked very well encapsulated- although my degree in pathology is still pending. We will not know the tumor type for a few days. Thanks again for the thoughts and prayers- they have made all the difference.