Formerly known as the Mason Update, we return to share the rollercoaster we call life with a SuperMase page. Mason and our family have begun the battle against Aplastic Anemia.

Wednesday, July 23, 2014

Pool-Hangover

On July 13th, we celebrated cannonballs.
 

I thought it would be a teary event, but, honestly – it was nice. There were no tears.  Mason was able to go in the pool without submerging his site the day prior, but, we made him wait to do any jumps until Sunday, the 13th. Then, at what felt like the very last minute, and amazingly, our pals brought a party to our house complete with food and drinks, and everyone took a dip in the pool. I mean – everyone.  We swam so much and had so many people in our pool from daylight to dark - that our pool went into shock. (No really. Green. Shock. Eww.) It was a very awesome and wonderful day. 

As of right now, we’re monitoring some of Mason’s counts. His numbers went a little wacky following his cannonball shenanigans, and, he had to visit Rady’s and be poked more than once last week.  He’s been a champ at dealing with it, and, those pokes are definitely worth his pool time. He will return again this week, and we hope for good results.  A little too much partying can take its toll on anyone, so we're hoping that his first day of swimming (that we had absolutely no limits on) just may have taken a bit more out of him than we thought. Let’s just call it a pool-hangover, shall we?

Next on his agenda?  The Seany Foundation’s Day Camp.
Our wonderful Rady’s nurses told us about ‘Camp Seany’ a while back, and we are honored that Mason was accepted and is able to attend. He will be enjoying camp in Balboa Park each day next week with other kids that face or have faced cancer and other rare diseases like Mason’s.  It’s a juggle to get him to San Diego and back daily – and we are extremely thankful to his babysitter Heather and Uncle Jason for their help to get him home each day. And, thankful to my office for their flexibility so that I can drop him off to enjoy something “normal” for a change.  Camp Seany has medical personnel on site at all times, and many volunteers are nurses and former campers. We can send him to camp, and be completely confident in his safety and ability to take part in the activities they have planned.  We have made it a point to support this organization this year – and hope you will share details about it, and do the same.  Cheers to Camp Seany and their volunteers. And cheers for Mason to be able to attend without a line that needs to be flushed, or dressing that needs to stay dry.  When I filled out his application, it was long and complicated - and if I had to fill it out again, it would be far shorter. Our new normal could be a hell of a lot worse. We are challenged daily by Aplastic Anemia, but, Dave and I know we are also very lucky and are not taking it for granted.

Today, in addition to finally announcing a wonderful cannonball celebration, and Mason's ability to attend camp, I also send thanks to the kind people who are a part of a special Aplastic Anemia support group online who will read this and know who they are.  I am so thankful for social media, and the ability to connect with other families who are experiencing similar circumstances with Mason's disease. We share medication information, encourage people to get second opinions on treatment, express concerns about side effects and treatments and also inquire about inexplicable behaviors. Someone always answers, and someone seems to always be in the same boat.

I know that people across the country follow this blog. And, I think it’s important to share something, so that people in our situation might feel at ease, or – for those who may know a family battling a disease, it might help them understand their extreme emotions a bit more. 

Mason’s disease not only effects him physically, but also emotionally. And, it effects our family emotionally. Very emotionally. Life seems upside down more often than it is right side up. People tell us quite often how strong we are. In other instances, people tell us that this experience will make our family stronger. When they say the latter, I want to stick a fork in my eye. And no offense to anyone who has told us that, I know you mean nothing but the best.  But, quite honestly, it feels more like this is tearing us apart, instead of  making us stronger. We have an ARMY of support, and Mason has had AMAZINGLY POSITIVE response, but, sometimes, I still want to reach for that fork.  It can be so frustrating. A member of the support group shared details with me about her family’s experience with Aplastic Anemia.   She told me that during a hospital visit - after she left the room because of a disagreement with her husband - her child’s hematologist told her that many people believe illness brings you closer.  But, that in that doctor’s experiences, it actually drives them apart more often. THEN, when they stay together, that’s when the stronger bond within the family is formed.

I could not have been more thankful for her sharing such a statement. I know we are strong, but, it doesn't always feel like it. So, now, when I feel like we’re falling apart, I’ll be more confident that we will be STRONGER later, and doubt myself a little bit less. We're lucky. SO lucky. Dave and I, and our kids, could not be more blessed. So, admitting anything about a fork could be perceived negatively. But, it's a rollercoaster. Every. Single. Day.

So. While we wait in line for the next rollercoaster ride, we'll protect our two crazy kids as best we can. And, do cannonballs, of course.  Love to all, and thank you for your continued support.

Wednesday, June 25, 2014

Thanks Mission Fed!

Since thanks to my Mission Fed family for their support and my pal Emily's work to organize a blood bone marrow registry drive onsite at my office one week ago.
 
39 pints of blood were taken - enough to help 117 people. And, 8 new bone marrow registrants were added to Be the Match. Each of them is a lifesaver to us.


Monday, June 23, 2014

Peace Out Hickman

Today is a SuperMase day to remember. The past few weeks have been a roller coaster, and rather than update you on the ups and downs, I'll just let you know that today is a very good day.

In our last post, we claimed the search for some serious cannonballs.  Today, we're officially counting down the days. Over the past few weeks we have been monitoring Mason's counts, and they have remained high enough for Mason's doctor and surgeon at Rady's, to approve the removal of his Hickman (Central) line.  Dave took pictures of Mason's line - but they are a bit shocking to see sometimes, so, instead - you can google Hickman Line yourself, and take a peek at the tutorial below. 

Mason has had his line since December 19th, stuck to his chest, taped up and protected.  He has had a daily flush of Heparin in each connection every day since. Dave has done a sterile dressing change - weekly, if not more often, since then - and, Mason hasn't had a real stand-under-the-showerhead shower ever since.  He hasn't been able to swim or be away from us fore more than about a day. Although our abnormal life has become normal to us, it really just isn't.   With Mason no longer dependent on transfusions, and without a transplant on the horizon - the Hickman line has become something that poses more risks to Mason, then benefits.  With the support of his doctor - we made an appointment to have it removed.

Today - it was taken out.  Mason went in for outpatient surgery this morning, with much anxiety - but has come home without a central line.  No more daily flush. Real deal showers.  No more weekly dressing changes. And, once his chest heals, he's going to be swimming in our pool. And, maybe at the fancy resort down the street.

So - we move forward, and hope that with each passing day his his counts improve, with less roller coaster rides. We're going to give him the summer he deserves, and some swimming in the backyard. The next few weeks will bring new challenges - he will have to be 'poked' at the clinic to have blood taken, which is NOT something he is looking forward to. It's all a trade-off. 50 cannonballs for 1 poke is how I've tried to explain it. Last week, Mason told Dave and I, "I'm not sick. I just have a disease."  So, he's good.  He feels good. Cheers to some future cannonballs. Peace out Hickman.

Tuesday, June 3, 2014

Seeking Serious Cannonballs

It's been one month since our last update.  It is still a mellow Morash life for us - far less happenings since this Aplastic Anemia business came into our lives, but far more fun over the last four weeks than it has been for some time. We have ventured out more, and Mason's discomfort in public, and fear of germs, is almost non-existent these days. (I'm not sure how I feel about that quite yet.)  In the beginning of May, Mason's Aunt Sarah and Uncle Marshall spoiled us with some baseball tickets, and we headed to Angel Stadium to see the New York Yankees kick their butts - and see Jeter on his farewell tour. Mason was against it at first, I think fearful of the crowd, but then asked if we could stay longer when Dave and I thought it might be time to leave.  It was awesome. And, we saw Jeter hit his first home run of the season. Double awesome.

Dave and I enjoyed a night out with our best friends sans kids, and a few weeks later, Sarah and Marshall came to visit over Memorial Day with our niece and nephew in tow. Our house became a house of 8 - with family and friends constantly passing through. We enjoyed time at the beach, barbecues in the backyard and the kids enjoyed their sleepover nights. It was sort of a "staycation" at our own house, and thoroughly enjoyed.  Somewhere in there, San Diego caught fire again, and we were lucky enough to be outside of the evacuation zone, and happily hosted a few fire refugees. 

Amidst the fun we've had over the last month, Mason has also earned himself some credit for more procedures, having had an MRI and echocardiogram. The MRI, which most people fear, is easy at Rady's. They put a headset on, let kids pick a movie, and outfit them with goggles that play the show right up close.  Mason didn't even know he had gone in the MRI tube. And, he told me afterwards, it was like sitting in the front row of a movie theatre, but without having to tilt your head back. A perfect 7 year old perspective.



Results from both tests turned out just fine, and although he has a build up of iron in his system, his heart and organs are lookin' good.  Doctors will continue to monitor iron levels, and as he continues to make his own blood, those cells should start using up some of that iron, and help his body even itself out. 

Today, we have happy news to report.

December 2013
WBC - .2
HGB - 7.2
PLT - 3
ANC - 24

May 2, 2014

WBC - 1.9
HGB - 8.6
PLT - 49
ANC - 1120

June 3, 2014
WBC - 2.6
HGB - 10.1
PLT - 73
ANC - 1620

We're on the up and up. And, while, we still are not out of the woods, and have serious concerns about this kids' platelet levels, we are showing improvement.  We met with a pediatric surgeon today, and with some increased platelet levels and continued lack of transfusions, we hope to have Mason's Hickman line (IV) removed by the end of June.  That means --- he just may be swimming in our backyard pool by August.   It's the one thing I think he misses most - and that we miss most for him, and considering he can't play any other sort of sports right now, it will improve his quality of life ten times over.  Mason is a trooper. The kids at the beach - well, they play in the water. And, he has to stay at the shore - or in the sand. And, at home, even with our super-duper-2 inch wetsuit, Mason has to stay on the steps of our pool and just put his feet in. I go bananas when he pushes the limit to his waist. Knowing it is summer time, and we're missing out on some fun swim days and trips to fancy resort pools, can be a bummer.

What happens if he needs another transfusion down the line?  Well, we'll take that as it comes, but won't plan for it. We've decided if that were to happen, we would have a different type of line placed, called a port, which would allow him to swim. It's more invasive for transfusions, but, less invasive on his life.

Today, there is quiet celebration.  Also slight panic as I wonder how we are going to navigate the summer ahead. Mason's marrow is working hard, but, we need those platelets to increase a bit more for a surgery without much sweat. So. We can check the box next to "Approval to remove the line."  Increasing platelets is next. I can promise, when that line comes out, and his chest has healed - there will be some serious cannonballs in our pool.

There are so many so many people that we must continue to thank. I feel like I was on top of my notes of appreciation for so long, and have fallen far behind. I am doing my best to catch up, I promise.  There has been so much work done to share details of Mason's cause with the world, by not just our family and friends, but strangers in the community. There have been bone marrow drives at Rutgers University (thank you Maggie Moo) as well as Brownie, Girl Scout and Cub Scout troops galore, each raising funds for Mason's cause. Their funds are all going toward the San Diego Blood Bank - who help so many.  And, my next event in honor of SuperMase - thanks to my supportive Mission Federal Credit Union, is a Blood Drive and Bone Marrow Registry - at my office headquarters. I could not be more thankful - and can't wait to get my first blood donor card.
Cheers to another positive update.

We have a long road ahead, but, right now, there doesn't seem to be any traffic in our path.

Friday, May 2, 2014

Take that.

It's been almost a month since the overwhelming SuperMase Fundraiser. Buried in my own little Morash world, I have no excuse for a delay in thanks. But, I promise, it was well worth it.

Over the couse of 3 months of planning, our best pals, along with a long list of donors, volunteers and guests of the event - raised $20,500. 

 
Thanks is in order to the key planners, Shanna J. and Alison J. who made the SuperMase event a full time job. To Brooke P. for her shirt support, and the boys - Jeff J., Jason J. and Brian P., for their entertaining ticket sales. To D Street Bar and Grill, again, for the donation of their fantastic location, as well as Ruben G. at El Nopalito and Merrill O. at Rimels for generous catering contributions. Thanks to Nikki L. and Aaron L. for contributing booze to the event, as to Julie R. for sweet desserts. We wouldn't have record of the fun if Roon Brown hadn't captured it in photos, and Ryon A. hadn't created a montage video. To all of the volunteers who worked the event - from check-in, silent auction promotions and wine raffles - Kelly, Jacob, Danielle, Carrie, Rebecca, Jim, Marie, Bill, Sarah, Heidi and Susan - thank you.
 
Huge thanks to all that donated auction items. Auction items for the night included basketball, baseball and skateboarding memorabilia,  a GO-PRO camera, Street League VIP tickets, vacation homes, valuable art, Legoland tickets, golf clubs, tee times, SuperMase golf balls(!), spa treatments, limo rides, stand up paddle boards, restaurant gift certificates, hotel packages, concert tickets, wine baskets, YMCA memberships, photography sessions, and even handmade deck coolers and a bar. Yeah. All that and more. 
There were wine raffles, amazing garden gifts, teeth whitening, rare whiskeys, martini baskets, INT soft surboards, MORE concert tickets and a TON of surf and skate gear for raffles. Every time I looked around, someone was carrying around a new hat, skate deck, t-shirt, wine bottle or surfboard. We knew almost everyone in attendance, so as you can imagine, with each win - we were ecstatic for them. What I thought would be a teary night, was actually one of happiness, as we were surrounded by smiles, and laughter. It was really, very amazing.  Our friends, family and community - are awesome.
 
While the future remains up in the air - funds remain in Mason's Benefit Account with our most sincere hope that it all go back to those organizations that have helped us battle Aplastic Anemia. We have been blessed to have so many supporters, and help through the past four months, that, I'm fairly certain we could not be any more fortunate.
 
In the mean time. Mason is kicking the hell out of his disease.
 
I had high hopes of posting great news along with our thank you to so many. And, the day has come.
Yesterday, we received labs showing results that Mason is creating his own Red Blood Cells AND Platelets, and he has not had a transfusion since March 27th.

December 2013
WBC - .2
HGB - 7.2
PLT - 3
ANC - 24

Today

WBC - 1.9
HGB - 8.6
PLT - 49
ANC - 1120

In a short summary, Dave and I received an opinion today that if Mason's health and response to his ATG treatment continue on the same course that they have for the past month, that he may be able to return to school for 3rd grade. Big, happy, holy moly news.

All is well in our world today.

Life is still filled with caution, gnarly rules, medication, clinic visits and high emotions - but we will continue to work towards having Mason’s central line removed, and hope he can return to school in August.

So, to Aplastic Anemia - you can TAKE THAT. You should NEVER mess with a Morash, big or small. Ever. When you do, an army of people will come after you. I hope you have learned your lesson, and just disappear. Forever. 

The faster you get out of Mason's life, the better off you'll be.

Sunday, April 27, 2014

Troop 1832

Weeks ago, I went to visit my 'every 6-week' physcologist, AKA, hair stylist, Kathy. She's been cutting my hair for almost 10 years. (Now. That's just crazy when I think about it.)  She told me about her daughter Jolene's Brownie troop - and that they had chosen Mason's Benefit Account as one of the charities that they would raise money for this year.  How sweet is that? 

Their hard work has resulted in a donation check for $100, that we kindly requested they instead donate to the San Diego Blood Bank, in Mason's honor.  The Blood Bank, and their work, are a big reason for Mason's survival, and we were thankful that the Brownie troop agreed to forward their funds onto them directly.  Big hugs to these girls...

Thursday, April 24, 2014

Rutgers. Tomorrow. Be there.

Where will you be tomorrow?  If you're anywhere near Rutgers University - please stop by and thank one of the Scarlett Knights for their support.

The Rutgers women's soccer team will be promoting 'Be the Match' during Friday, April 25th's spring exhibition against Princeton.  Mason's cousin Maggie has done more to promote the bone marrow donor registry than one could imagine in these past four months. Hug her for all of us.



(And forgive me, but an update on Mason and the SuperMase event is coming soon... )