Tuesday, January 17, 2017


Years ago my dear friend Gina from across the oceans- did a remarkable thing for us- with a Tshirt. I had no idea how many supporters we had and it was such a boost to see pictures of all our friends all over the world in a Tshirt designed by Hope Friedman- just for us- representing US! Here's the original story TEAM MALLORY

It's hard to believe that was years ago. SO many unknowns- ups and downs and here we are!

It was completely out of my comfort zone to have a tshirt- to let friends help- but I learned so much and we felt so much love- THANK YOU.

As we go into this next round of unknowns- we've collected a few more friends along the way. I am so grateful for the kind giving souls who help transport kids, feed the bottomless pit that is my boy and give the kids love when I have less than enough energy and just check in periodically to say hello.

I know a couple of my kids have outgrown their T's. And there may be a couple spots on mine. And the hawaiian kids really want hoodies- because it is very cold here in HAWAII! There's even a new style available- a really cute football jersey style!

Since many are not on FB- I wanted to share this with you. No obligation at all.  It's a quick turn since the surgery is fast approaching !

Once again thank you- for the thoughts- prayers- kind offers for help and cards and gifts that have arrived. Each one is so meaningful and appreciated.


Monday, January 9, 2017

Eviction Notice. Feb. 8.

I did kinda check out over the holidays and focus on the kids and the memories. I did the cursory hunting for MRI order. Which entails locating passwords for 3 different sites to try and see if an order is in and the referral. It was not.

Cautious nagging from mom and special friends kept me honest. Especially that special friend who says- I will be there the entire month of February. I know what that means. In addition to my onc, nurses and 2 neurosurgeons- my trusted advisory committee is weighing in on the necessity of this plan and surgery.  So I finally emailed my new neurosurgeon's secretary. The MRI order was at Tripler and can we put a date on the books, she asks. Yeah. lets. The MRI had not been referred out. Can't win for losing or predict. So I call and make the appointment  for a Brain MRI (Thursday)and we settled on a date for Boobie Tumor Eviction. FEBRUARY 8. Notice is given. a month to prepare.

Now that the date is set- the nagging- I have to schedule it feeling is gone and we'e moved on to the lets get this shit show on the road feeling. The I have to get shit in order feeling is overwhelming. The I am too tired to do anything but basics feeling is overwhelming. So each day- a half an hour to organizing something. The way I want it. I also have 8 whole days to get stuff done with Monica and mom when they are here. Because the last thing you want to deal with when you have a brain tumor is the am I legitimately losing my mind or are people messing and moving things feeling.

After so many years of doing this journey and trying to be independent as possible- we have gotten there. Phil is still not so much on board with the asking for help- so please be gentle. He's gonna need it because I need him.

Here's the general idea- in the hopes of keeping it brief and everyone knowing whatever.

The tumor is in my cerebellum. For non brainiac people- this the the fun spot at the base of the head- near the neck that controls things like balance, coordination, and some muscle control. So for surgeon sorts who deal with major cognitive and sensory issues with patients- a patient stumbling around like a drunken pirate isn't the worst outcome. Now- then there's me- who is a bit of a control freak- doesn't so much like the out of control, dizzy feeling and you kinda feel like this is one of THOSE trying times. SO I have faith.

The surgery will take several hours- I will have a super duper high defintion MRI right before so the surgeon knows what is going on and essentially will have a gps map of the tumor region. I will have to sit through the surgical admission center nonsense which usually takes about 3 more hours than it should whilst you listen to every employee of the area stand in the hall complaining about everything from hunger to long hours. There was the famous previous incident where we took advantage of the wifi and sent ICE(customer satisfaction survey) complaints over an over while we waited. That's a lot of complaints in 3 hours. I am so anxious to see the improvements. Not holding breath- will affect pulse ox and ekg and possibly delay surgery....

The doctor will cut into the back of my head- and due to the muscles back there- recovery will have some good pain involved. I'm planning on taking advantage of meds.  The dizziness and balance issues will be a wait to see thing and most have some for a few days to a few weeks. I will probably be in ICU for a night and then spend 3-7 nights in the hospital. I have reinforcements caring for the kids and really want Phil there to help me.

After I get home- between the whole brain surgery thing and massive doses of steroids- I will probably not be a visitable human. I promise to let you know if this ends up being different than expected. I would like to have our home environment be as zen as possible. Ok Ok insert maniacal laughter here. I am working on getting our bedroom cleaned and relaxed and hope to get our lanai updated for a relaxing fresh air space- I have a month right?!?!?. If nothing more- I will get the kids to hose everything down So I don't have to flick the lizard poop off the furniture before I sit.

So what we will need as a family. Please stay tuned. I have a friend who will put together a meal train for us. Many who are going to help with kids' rides to school and activities and give them much needed love during this time. If there is something you would like to do or want to be added to the "call in case of need" list- please message me.  We will have my mom and Monica here for the first round, and several others on call- but my brain surgery friends assure me- 6 months is a realistic time frame to adjust to new normal. Notice I don't say get back to normal. I am very hopeful and plan on exceeding expectations- but brain surgery is not for the weak. I've been on the helping side several times. It is a frustrating beast on lots of levels.  As always- prayers- juju, positive anything are very much welcome and appreciated. Messages, cards- always always loved- for me, phil, the kids. A good friend has become a Lily penpal and it's amazing what a morale boost a piece of mail can be for the littles! Thank you thank you thank you and lets get er done!

Saturday, January 7, 2017

New Year, New Challenges, New Opportunities

Sometimes I wonder how I still let time get away from me. Then there are those long hours at night with aches and insomnia that I wonder if I can feel the minutes slipping away. I try to immerse myself in the sounds, the calm, the memories I've collected in this crazy brain of mine. But more so the ones that touch my heart. None of which seem to be affected by the slowly changing glob of cells in my cerebellum.

We wanted more normal and we embrace it. Normal kid silly shenanigans to remind us- none of us are perfect- them as growing humans, us as parents. Parenting is very messy. Life is messy. As we clean up the messes, we get to try an put things in the order we like.

Phil still works long hours. We snuck away one day in December for a lunch date. He spent half of it on the phone with work.  He took a couple days off before Christmas and took over my busy, allowing me to do some of the fun Christmas stuff. He got some general maintenance things done around the house and with the van- finally got to take my Buddha to see the Big Buddha at the Valley of the Temples.

I do love much of the busy-ness of the holidays. The decorations, making cookies and gifts. They are my favorite memories and traditions. They are art therapy.  The girls are even getting old enough they don't want to take the standard goodie bags- so when I put together build your own snowman marshmallow kits- Bella nearly had a meltdown. BUT BOYS WONT LIKE FROZEN. Yes my beautiful child, but everyone loves stuffing huge marshmallows in their mouth.

Kiera had a ballet performance at the new mall. After daily rain for over a month, the weather cooperated-we were worried because of the outdoor stage. She was beautiful.

I went to the girls' school program. Phil couldn't make it because of a new work kinda thing- to be explained later. There were so many parents there. The most I've seen since we've been there (close to 10 years). I couldn't even get inside to see the girls sing- but wrangled a decent view from the door.

Took the kiddos ice skating since they had so much fun at the squadron Christmas party there- got cold and a cold. Bella made a fabulous ugly sweater and helped me with an adventure in making organic coconut sugar scrub.

Kiera and Lily performed songs at Ward Center and we talked dad into some art therapy after. Phillip was spending the day with his girlfriend for her birthday- doing community service. Because that's what she enjoys. I love this. Her family is wonderful, takes good care of Phillip and even helps with our girls.

Christmas itself was fairly quiet. We got to hang with the cousins, played games and started getting the house in order. Some of the BIG news before Christmas in the Mallory house was that Phil was offered a new position in the Hawaii Guard. He will be taking command of the 169th Air Defense Squadron at Wheeler Army Air Field.  2017 brings some exciting new challenges on different levels!  I am extremely proud of Phil, as a friend, as a wife and mother of his pretty cute kids but I have to say the man has a work ethic that is far too rare these days. I just can't express how in awe of him I am. Despite everything we have going on at home- the medical challenges, which aren't just paper cuts or colds and flu, he does his job and then some while still being the best partner through chaos that I could ever ask for. I'm pretty sure over the past 11 years at any given time he's had or been doing 3 jobs at once- not including anything at home.  We are really sad to be leaving our Hawaiian Raptors family who we have been with since 2005. But that is also a good thing about being on an island and in the Guard- We will still get to see each other.

Being in between jobs at the holidays was a balance, but as always we got creative to spend time together. One of those days we spent cleaning out his office in the fighter squadron. I won't lie- it was kind of tough. Even though the building is new, the office was relatively new- I know how hard he has worked and it doesn't show in the trophies on the bookshelf or the framed prints. It showed in the stacks of papers happily shredded- the bits of lunches past steamed cleaned from under the desk, the constant ping of messages and questions still stacking up on his phone.

Yesterday we got to see Phil introduced as the Commander of the 169th. I am truly thankful for the warm welcome we were given during a busy day, that our family had the opportunity to meet many of the men and women of the 169th and see just a small bit of what they do to protect the state and country. I've always said that when the time comes, I don't need public acknowledgement or thanks, I am the lucky one to be his wife and grateful to be by his side for this journey. I hope I tell him enough. It was really difficult to not tear up when he began his talk with, I've never officially had the opportunity to publicly thank my family.  Although we are not ones for pomp and circumstance and have repeatedly said that official recognition is not necessary, sometimes the best way to lead is by example and I have to say after showing and receiving gratitude- it can be a humble way to lead. I know I was humbled by his words- although not unfamiliar to me but knowing they fell on strangers' ears. Yet a short time later, the kids and I got to meet so many of those friends and now they are no longer strangers. As we head in to many unknowns and we continue on with the known of constant change,  there are many good things to come and many opportunities are just challenges we haven't figured out yet.

Lily Kay Monkey

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