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.