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.

Tuesday, December 16, 2014

One Year

One year ago, today, Mason and I were scooted out the back of his pediatricians’ office. The word leukemia was spoken. Go home. Bags should be packed. A call to David from the parking lot with swift instructions. Drop off of Ethan to Dave’s parents. Emergency room fear. A woman with a sick baby, who told me she had been waiting HOURS for her child to be seen, while we were whisked away. IV’s. A nurse named Freddy who I think might not really exist, but is an angel from the heavens. The longest hallway we’ve ever walked down. Behind a doctor, with uncertain news. Numbness. Walking out of the office to an alley. Tears. Forcing ourselves back together. The first of many blood transfusions. More fear.

Checking out from the day to day real life, and into a life in the HEMOC unit at Rady Children’s Hospital. 

Bone marrow biopsies followed, and finally, a diagnosis of Severe Aplastic Anemia. Not cancer. But, no better and no worse. Just more rare.

Today, we celebrate. We thank God for unanswered prayers – thankful that Ethan was not a bone marrow match – so that we couldn’t proceed with a transplant that we desperately wanted. Thankful that Mason has not needed a Bone Marrow Transplant to live. Thankful that the year behind us didn’t include months living in Los Angeles hospitals. Thankful that Mason is alive, and happy. That blood and platelet transfusions ceased in the late Spring. That although he is not cured, that he is living a wonderful life that makes him think he is.  He continues immunosuppressive treatment.  He swallows pills – and most 8 year olds don’t. He lives with Rady’s visits. He gets blood tests. He deals with it. There are days when Dave and I look at each other and words don’t have to be spoken about the fear that remains about this disease. The fear that some people will never understand, and perhaps, some may not believe exists. Fear of the common cold. Pneumonia. Swimmer’s ear. A fall off a bicycle. Ocean bacteria. Tap water. Life is not the same. It might never be.
 
On this December 16th, we celebrate one year of beating Aplastic Anemia. One year of survival. 

Love to you all. To the family, friends and strangers to prayed for Mason, to those who gave Mason their blood - especially that Mountain Man kind. To everyone who joined Be the Match, in hopes they might be his match, and willingness to be anyone’s.  To the organizations that supported us. The charities that gave Mason more joy than we could imagine. The fundraisers had by the best of friends, that helped us pay bills – and kept our spirits alive. To our best friends and family who ALWAYS answered our calls.  Collectively, there are millions of people. And, I swear to the heavens, that Dave and I are thankful for every single one of you. 

Today - even though our lives are crazy and chaotic – we will take the time to appreciate them. And know that we are blessed.





PS - Make A Wish Update, soon. There's so much to write!

Thursday, October 9, 2014

Where in the world is SuperMase?

SuperMase is a busy 3rd grader these days - attending school.  In person. Not at the dining room table. :)   After Mason's 8th birthday in August, he visited Rady's, and received more positive labs.  He began class on August 18th - and although he was a bit tired the first week, he thrived. His teacher is always in communication with us, and even scored her class a HEPA filter, which, just might eliminate a few viruses or extra awesome germs floating around. She's definitely a blessing. It was scary. It still is.  There have been lots of adjustments along with returning to school, and flu season is around the corner.  We can't protect Mason from everything, and, have to deal with it as best we can.  Mason is happier. His behavior is better - and he's enjoying his time at school. 

We lost (sniffle sniffle) our awesome family help - Heather, in August.  I feel like she was with us forever, but, it was less than a year. She began to help us with Ethan first in the winter, to help curb some of those toddler daycare germs. Then, she took care of Mason a few days a week, after he was out of the hospital consistently. The juggle was pretty insane - for us, and for Dave's parents who helped a tremendous amount as well. Now that Heather has found a new career, we have Kelly!  She rocks too. She helps us a few days a week afterschool - so that we can WORK - and try to limit Mason's exposure at least a little bit.

Dave and I celebrated our 10 year wedding anniversary in August.  We spent the evening packing (with much happiness) so we could take our kids on the first family vacation of the year.  2014 was going to be a big travel year for us. Turned out, not so much. So, when we were able to head to our little heaven in the mountains called Silver Lake for Labor day - we were ecstatic. 


It was an awesome weekend. Mason did great and had no issues with the altitude. Ethan loved it. We had one of the best trips yet. Ethan actually cried so much on the way home about having had to leave the cabin that we told him we weren't going home, and were on our way to the cabin. When we pulled in the driveway of our house, he cried again. Our family of 4 joined 23 others - bringing our crew to a massive 27. The kids literally had the BEST time. It was really, really wonderful for us.  (Oh, and there was a horseshoe tourney with a SuperMase team spirit! Mason is not pictured because he was off gallivanting with pals.)



September was busier than busy. I mean. Like - no room to breathe, back to the GO-GO-GO Morash routine. Hanging with pals, a normal work life, school events, birthday celebrations and the like - we're back to crazy. Good crazy.  Mason went in for another clinic visit mid-month, and while his numbers remained good - his body is continuing to struggle to maintain platelets. Those suckers just won't grow fast enough. It could be worse, and we try not to get to down about it, because his other counts were great. So, with monthly appointments at this point, the only thing we can do is hope that October results will be improved.  Mason's doctor has begun the process of weaning him off of cyclosporine.  When you see him, and compare photos of him to a few months ago - he looks healthier. He looks happier. He's growing - and is definitely bigger.  Thanks to his little brother, who loves to share - Mason is battling his first set of the sniffles. In Dave's words - it's devastating.  Sniffles for Mason throws Dave and I into panic mode. I try to be calm, and repeat over and over to myself that 'there is nothing we can do." We do everything we can - without sticking him in a stupid bubble. This was bound to happen. But, it's still stressful.  And, if you want to call me "drama" for worrying about sniffles - go ahead. I've been called worse. We can't give Mason Tylenol or Ibuprofen - so, when he is sick - if he gets a fever of 101 or more, we are headed to the hospital.

This weekend, we're hosting best pals from back east. It will be an extended fiesta at the Morash house. Ethan turns 4 - and we plan to enjoy some Legoland rollercoasters. Mase, will beat his cold, or, at least forget about it. Then, I head out of town for work - and finally - we go on Mason's Make a Wish trip.  Haven't heard about that yet?  Well. He was granted one. The lovely nurses at Rady's submitted his name - and we've been anticipating the trip for months. Based on what his wish is, we had to wait for his Hickman Line to come out AND, for his counts to improve. We're there, and are going in the next 6 weeks.  It's GOING. TO. BE. AWESOME. It's been a long year, and our kiddo deserves it.  Dave, E and I will just be along for the ride. And, it will just happen to be the first vacation that the four of us have ever taken on our own - without family or friends.  Just our little Morash clan of 4.  Lots of pictures later - I promise.  

There's been more and more talk in our house over the last few weeks as Dave and I have learned of others who have been diagnosed with Aplastic Anemia - about how God may have answered our prayers by NOT making Ethan a match for Mason. If Ethan was a match - we'd be in a whole different situation right now. And, frankly - Mason's quality of life just might not be as awesome as it has been for the last few months. We're reminded that even when you think that things just couldn’t be worse, and you're devastated, there is a plan.  You just might not know the right answer, as much as you think you do.  God answered our prayers, by not answering them. We know we're lucky. This is still a hurry up and wait disease. So, we're gonna hurry up and have some fun over the next few weeks, and wait to see what happens with our next labs.

Tuesday, August 12, 2014

SuperMase Toy Drive

An impromptu SuperMase Toy Drive started last week in honor of Mason's Birthday. In lieu of gifts, he requested Toys for Rady's, with a goal of 100.  Today, we celebrate Mason's Birthday - and tomorrow, we deliver more toys than he hoped, to the hospital when he goes for a doctor visit.  It's a wonderful day.

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.