St. Baldrick's Event at Martin's East

Sunday, March 23rd marked our third St. Baldrick's fundraiser of 2014. We were especially excited for for this day to arrive because Jaxsen was one of the children who was going to be honored on stage at the event. We knew that we would be overcome with emotion at the fundraiser because just two short years ago, Jaxsen made his first appearance up on that stage, but for a very different reason. When he was just 11 months old, Jax became the youngest St. Baldrick's shavee and had his first haircut on stage in front of hundreds of people. Fast forward two years, and he was on stage being honored for his bravery in his fight against cancer. What a difference two years can make.

The event started by having all of the honored kids walk up on stage with one of their parents. There were 32 children that were being honored at the event, but only 16 of them were present. Jax, of course, was one of them! While up on stage, we were able to stand next to one of our little friends that we've known for years, Scarlett. Scarlett is a little girl who battled AML a few years ago and WON! She was the little girl that Jax honored by getting his head shaved when he was younger. Reagan from  the radio station Mix 106.5 came on stage with the children and told the audience the story of each child. He told everyone about Scarlett's story, and then he moved on to us. When he started telling Jaxsen's story, I immediately teared up. It's one thing to write about Jaxsen's journey and talk to our close friends and family members about it, but it was overwhelming to hear someone else talk about it. He told the audience that Jax was Scarlett's friend and that he was the youngest person to ever have his head shaved at the event. He spoke of how recently Jax was diagnosed, and how he has been a brave boy during all of his treatments. Everyone clapped and cheered for Jax after his story was finished. And they all laughed when Reagan told them that Jax was wearing some pretty awesome dinosaur shoes!

After all of the honored kids were introduced, we left the stage and found our families. Nick's mom, aunt, and cousin came to the event to show their support, and so did my dad, step-mom, and sister. Nick was one of the last people who was scheduled to get shaved at the event, so we had a lot of time to walk around the fundraiser with our family. We walked over to the wall of posters that the organizer of the event made for each child, and quickly found Jaxsen's poster. We then took Jax over to the game area and bought him some tickets so that he could play some of the games. He immediately ran over to the mini-golf game and tried getting a hole-in-one. Unfortunately, even with daddy's help, he wasn't able to make one. But the person who was running the game kindly let Jax keep swinging his golf club since there weren't any other kids in line. He played a few more games and won some prizes, but he soon decided that he would much rather run around the event like a crazy person instead! Luckily (for him) there were lots of other kids there who had the same goal in mind. He quickly found one of his old friends from daycare and the two of them spent more than thirty minutes chasing each other in the hallway. Those little boys sure did have a ton of energy!

We saw a lot of our friends at the event, so we spent some time catching up with them since we haven't had too much time to socialize since Jax was diagnosed. It was great spending a few moments having actual adult conversations! We almost forgot what that felt like :)

It was soon time for Nick to make his way on to the stage to have his head shaved. He wanted to have Jax sit with him when he got the haircut, so he grabbed the little dude and made his way into the barber's chair. We told Jax that daddy was going to get a haircut and that he wouldn't have any hair left afterwards. Jax laughed and said, "You're going to look like Dillion, daddy!" (Dillion is Jaxsen's 2-year-old friend who sported a buzz cut a few months ago). Jax watched with curiosity as the barber shaved Nick's hair off. When clumps of hair started falling down, Jax reached out his little hands and tried catching them! He eventually gave up and just started staring at Nick with fascination. When the haircut was finished, Nick and Jax held hands and walked off the stage.

   

Overall, the St. Baldrick's event at Martin's East raised $122,000 for childhood cancer research this year. WOW! Team Scarlett, the team that we were proudly a part of, raised a whooping $33,000! In the three years that Team Scarlett has been participating in St. Baldrick's, they have raised over $100,000!! What an amazing support system and group of people.  As parents of a child who will benefit from that research, we are so grateful of everyone's generosity and dedication. We look forward to the day when all of this research will result in a cure for childhood cancers so that no more precious babies have to suffer.

A Cold Treat on a Warm Day (Icy Delights Fundraiser)

Saturday was the perfect day for an Icy Delights fundraiser! The sun was shining, there was a cool breeze, and the temperature got up to 66 degrees! We had been looking forward to this fundraiser for a few weeks. It all started when the owner of Icy Delights, Bill, wrote a post on the business's Facebook page saying that he wanted to start the season off by giving. He wanted to help a family in need, and he reached out to the Facebook community to help him find one. One of the awesome moms that I babysit for, Margo, saw the post and contacted Bill to tell him Jaxsen's story. He was so impressed with how Margo spoke so fondly of Jax and our family that he immediately decided to choose us to help. He contacted me and told me that he would help our family with Jaxsen's medical bills by donating 100% of the proceeds from his opening day to us! He also offered to give away a free month's worth of snowballs to one lucky person who shared his status updates about the fundraiser. We were blown away by his generosity! We quickly started counting down the days until the fundraiser.

The morning of the fundraiser, Nick and I made the mistake of telling Jax that we were going to get ice cream and snowballs later that day. He immediately started crying because he didn't want to wait for his ice cream! He wanted it then and there. We told him that we would only go and get some if he was a good boy. Our bribery worked for a little bit, but he was still the mischievous little troublemaker that he always is! After he woke up from his morning nap, two of his young cousins, Makayla and Jordyn, came over to the house with their Mom-mom (Nick's Aunt Gail). They were excited to get some ice cream too! We quickly packed everything and everyone in the car and headed over to Icy Delights.

When we pulled up to the snowball stand, we were surprised to see such a long line of people waiting to get their treats and support Jaxsen. We were promptly greeted by Bill, who told us that they had been getting great business all day! He showed us a table that he had set up in front of the stand that had a poster with Jaxsen's pictures and story on it and a bucket for donations. We talked for a while longer, but Jaxsen was getting impatient so we excused ourselves so we could get him a cup of chocolate ice cream. Nick and I got our snowballs and then met up with the rest of the family in the grassy area next to the stand. Aunt Gail laid a blanket down on the grass so the kids could sit down and eat their ice creams. Aunt Angie and Ms. Yvette drove up just as Jax finished up his cup of ice cream, so they got him another bowl when they ordered their snowballs.

After the kids were finished with their treats, they decided to run around for a little bit as the adults socialized. There was a tree in the grassy area next to the stand that Jaxsen, Makayla, and Jordyn decided to explore. As they were hiding in the low branches, one of the kids looked down and saw a strange, fuzzy, black creature! It looked like a giant caterpillar to us, but the kids were convinced it was a spider. They took turns peaking through the branches to catch a glimpse of the creature and then running away and squealing in delight. We let the kids run around for about 30 minutes before telling them that it was time to head home. 

The entire time that we were at Icy Delights, there was a long line. We were happy to see a few familiar faces while we were there, and it was humbling to see so many unfamiliar ones. All of the employees who volunteered to work at Icy Delights for the fundraiser were extremely nice and personable. Bill was great also, and obviously a very generous man. We are so grateful that we had the chance to meet him and his employees, and be on the receiving end of his graciousness. We can't wait to go back to the Icy Delights in Dundalk for more icy cold treats throughout the summer!

         

Keep Calm and Chive On

Since Jax's diagnosis, Megan, Jax, and I have worked hard to help raise funds for cancer research. Today we made an appearance at our second St.Baldrick's event in two weeks. This one was also held in Annapolis, but at Fado Irish Pub with the awesome members of theChive Maryland. If you don't know about theChive, then you should definitely check them out and all of the wonderful things that they do.

As a group theChive has raised thousands of dollars for multiple charities and they have also helped out individuals and families in need. Zack Rexine and the members of theChive MD were gracious enough honor Jax at their event and even donated to Jax's GoFundMe. They, as well as many other chivers, have shown us a ton of support.

We all had a good time watching all of the brave shavees part with their hair for a great cause, and Jax had a great time and he quickly made a lot of new friends. The guys and girls of theChive MD raised over $17,000 for childhood cancer research. They really kicked butt and we were glad to be their with them to celebrate their accomplishment!

Round Two of Chemotherapy: Consolidation (February 14- March 14, 2014)

Round 2 of Chemotherapy, also known as the Consolidation phase, lasted about a month. It is in this phase that the remaining Leukemia cells are targeted. Thankfully, Jaxsen flew through Consolidation without any issues. He was off steroids, so he had regained all of the energy that he had previously lost...and then some! We were still unable to leave the house for extended periods of time due to his compromised immune system, so unfortunately he had to figure out a way to use up that energy while being confined in the house. We spent most of our days doing puzzles, playing with dinosaurs, coloring, watching Jurassic Park (his new obsession), and building forts out of couch cushions. He definitely was feeling stir-crazy at moments, which is a terrible thing to combine with a ton of energy! But we somehow figured out a way to make it work each day.

As part of his treatment in this phase, Jaxsen needed to get a spinal tap every 7 days. The purpose of these spinal taps were to administer chemo directly into the spinal column to attack any Leukemia cells that might have made their way into it, and to prevent any new cells from coming in. Thankfully, Jaxsen's Leukemia was caught really early, before any cancer cells could make their way into his spinal column. This means that the spinal taps that he received were just done as a preventative measure. This didn't make it any easier to see Jaxsen receive anesthesia every week before the treatment, though. One of the hardest things I've to do is not bawl my eyes out as my baby drifts off to sleep in my arms. I am not sure why this affects me so much time after time. It might be nervousness about the upcoming spinal tap, or a feeling of remorse that Jaxsen's little body has to endure so many pokes and prods. I am so grateful that Jax will have no memory of any of these procedures or needles when he gets older. 

Valentine's Day started the first day of Consolidation. On that day, and on the following two Fridays, Jaxsen needed the spinal tap. He did well each time. His blood counts came back normal and he recovered from each procedure perfectly. Which meant no more trips to the ER for us!

As Jaxsen became more familiar with the procedures and the routines at the hospital, he also became more inquisitive about what was going on. He watched with curiosity as the nurse accessed his port (by placing a needle in his chest) and he often wanted to help the nurses draw his blood and administer the saline solution. He is a very hands-on kid who is clearly going to have a future in the medical field!

On the day of his final spinal tap in the Consolidation phase, the nurse surprised Jaxsen by telling him that they were going to have a water fight in the room! She gave Jaxsen a plastic syringe and filled a little bucket with water. She showed Jax how to fill the syringe with water and then told him to wait patiently for the anesthesiologist, Dr. Zuckerburg,  to enter the room. As soon as he walked in, Jaxsen squirted him with the water! Dr. Zuckerburg was a great sport and immediately laughed about it. But then he got in on the action, too! He filled a syringe of water and started to squirt Jax. Before long, the nurses, Dr. Zuckerburg, Jaxsen, mommy, and daddy were all soaking wet! The only one who was spared was Dr. Unguru, the pediatric oncologist who did the spinal tap. All too soon, the fun came to an end and Dr. Zuckerburg gave Jax his anesthesia in preparation for the procedure. Jaxsen helped push the anesthesia into his port and quickly fell asleep. Once again, mommy and daddy were left fighting back tears as Jax slipped off into dreamland. It's a good thing we know Jax is in good hands at Sinai!

St. Baldrick's and Go Ruck event

After finding out about Jaxsen's diagnosis, our good friend, Adam Lublinsky, contacted me and told me about a St. Baldrick's fundraiser he was participating in to raise funds for childhood cancer research. The St. Baldrick's Fundraiser is a volunteer-driven event in which brave individuals, who are sponsored by their loved ones, shave their heads to stand in solidarity with kids who lose their hair to cancer. Since the St. Baldrick's Foundation was created, they have had over 7,892 events and fundraisers and have raised enough money to fund $127,543,680 in research grants.  Nick and I were familiar with St. Baldrick's because Jaxsen participated in one of  their events in March of 2012. One of Jaxsen's little friends, Scarlett, was diagnosed with Acute Myeloid Leukemia in July of 2011. Her parents formed Team Scarlett in her honor, and Jaxsen raised $127 and had his first haircut on stage in front of a thousand people.

Adam contacted us and asked if he could use Jaxsen's story to raise awareness and money for the St. Baldrick's fundraiser at the O'Loughlin's Restaurant in Arnold, MD. He told us that before the head-shaving event, many of the participants would be taking part in the Go Ruck event. This is another event that is dedicated to raising money and awareness to fight against childhood cancers like Jaxsen's.

The Ruckers started early that morning to complete a challenge course that was designed to test their strength, endurance, teamwork, and leadership. The group worked together to complete every challenge given to them by the Cadre, whether it be carrying a huge log, forming a human bridge for others to crawl under, carrying bricks, or doing strengthening exercises. The group was tight-knit, and if at anytime there was someone who was struggling, there were always teammates there to help lighten the load. This activity was used as an example of how the community can come together to overcome obstacles such as those brought on by childhood cancers. 

Nick, Jax, and I arrived to the event around noon. At this point, the Ruckers were almost finished with their challenge course, and were headed back to the restaurant where the head-shaving was going to take place. We ordered some food and waited until it was time to go meet them. About 20 minutes later, Adam met us at our table and told us that the Ruckers were back and were anxiously waiting to meet Jaxsen. We bundled up and headed outside to see them. When we walked into the tent, everyone "took a knee" and listened as the Cadre introduced us. He told everyone to take a look at Jaxsen and be reminded as to why they did what they just did. Jaxsen absolutely loved being the center of attention. While the Cadre was talking to everyone,  Jaxsen kept looking out into the crowd and giggling at anyone who made eye contact with him. He also played peek-a-boo with Nick in front of everyone! Needless to say, everyone adored him.

After the Cadre finished introducing us, Dave Smith presented Jax with his very own Go Ruck patch, an awesome backpack, and a very generous donation from all of the Ruckers. We were so surprised to be treated with such kindness. We then got a group photo to commemorate the day, shook hands and gave hugs to some of the Ruckers, and then went inside to wait for the shaving to begin. We waited with Adam, his wife Kristin, and our new friend Rocky. Jaxsen was having a blast talking with Rocky's adorable 3-year-old daughter Briella.

Before long, the shavees were making their way onto the stage in order to get their haircuts. Jaxsen was getting restless at this point, so we took him outside to run around. When we tried going back inside of the restaurant about 10 minutes later, we were told that they had reached maximum capacity and that we weren't able to enter. We were disappointed that we weren't able to witness Adam, Dave, Rocky, and the rest of the Ruckers shave their heads, but we were thankful that the restaurant was filled with so many wonderful supporters. We were so glad to be a part of such a dedicated, hardworking, generous group of people, and we couldn't be more thankful to Adam for putting us in contact with Dave and the rest of the Go Ruck team.

Oh, and did I mention that the Go Ruck team raised more than $31,000 for childhood cancer research?! Jaxsen definitely wouldn't have such a positive prognosis if it wasn't for the awesome people like the Ruckers who raise money for life-saving research. So THANK YOU to everyone who was involved in this event!!