Casey Cares sent us to Chincoteague Island!

Casey Cares has a program called Celebration Vacations, which sends families to a destination of their choosing (within a certain distance). This program was created because the founders recognized the importance of allowing families to spend time together in a stress-free, relaxing environment. When we learned about the program, we immediately knew where we wanted to go... to Wallops Island in Virginia to watch a rocket launch! Jax has been obsessed with rockets for a few months and he loved watching launches on YouTube, so we knew this would be the perfect place to visit. I quickly emailed Linda, the Program Coordinator at Casey Cares, and she immediately got to work on planning the perfect trip for our family. She contacted Rebecca, the Public Affairs Specialist at Wallops, and the two scheduled a fun-filled morning for Jax including games and activities in the visitor center and a private tour of the facility. Linda didn't stop there though. She contacted Evelyn, who works for the Chamber of Commerce in Chincoteague Island, who not only suggested other activities for us to do while on our vacation, but also organized the arrangements and made them happen.

We originally planned to go to Chincoteague Island on the first weekend of June. However, we received news from Wallops that the rocket launch was postponed a week. We were told that the launch was not guaranteed to happen that week either, but we took the chance and changed our schedules around so that we could go on vacation the following week instead. Sadly, the rocket launch was again postponed, so we weren't able to see the launch after all. But we still had an amazing trip filled with memories we will never forget.

We headed to Chincoteague on Saturday, June 14th, immediately after Jaxsen received his in-home chemotherapy treatment. It took us about three hours to get there, but it was a pleasant drive. When we arrived, we first headed to the Comfort Suites, which was where our reservation was made for us. Upon checking in, we were informed that instead of staying in a room, we would stay in a private cottage that sat right against the bay. We were shocked by the generosity of Nicole, the manager of Comfort Suites. We quickly headed next door to check out our cottage, which had private parking, 2 bedrooms, a full kitchen, living area, spacious bathroom, and wrap-around porch that overlooked the entire bay. As much as we loved our cottage, we were in a hurry to get out of there and head to the beach.

We quickly changed into our bathing suits, grabbed some towels and beach toys, and got back in the car to head to the beach. On our drive down there, we passed some wild horses that were grazing in the marsh. We got out to look at them, but they were so far away that Jax couldn't even see them.

We played at the beach for about an hour. It was already pretty late, and actually quite chilly, when we got there, but we still wanted to give Jax some time to roam the beaches since he was looking forward to it for a while. After playing at the beach, we headed to Maria's Family Restaurant for our first meal in Chincoteague. Everything tasted great, and Jax sat still for the entire meal (which was a first!) so we left happy.

When we got home, we decided to have a family movie night since we were all pretty exhausted. We let Jaxsen decide which movie we would watch, and we weren't surprised when he chose Jurassic Park II. We cuddled up into bed together and drifted off to sleep while listening to the dinosaurs roar. 

The next day was Father's Day! Jaxsen and I surprised Nick by giving him a card and gifts in bed as soon as he woke up. We then headed to the hotel to grab some breakfast and then immediately went to the beach. We spent the morning digging holes in the sand, running into the waves, and looking for sandcrabs. Jax squealed with delight whenever we found a squirmy, little sand crab, and he was always quick to scoop them up with his shovel and transport them over to his dumptruck. He liked pouring sand on top of the crabs and watching them dig their way out of sight.

After spending a good bit of time playing in the sand, Jax decided he was brave enough to test the open waters. Nick strapped Jaxsen's floaty onto him and then picked him up so they could go deep into the water. I couldn't even handle the water splashing against my toes, so I knew I wouldn't be able to make it out there with the big waves. Jax absolutely loved having the cold water splash all over him. It was fun to watch, but I started shivering just thinking about how cold he must be. At least he didn't seem to mind.

All of the running and digging eventually caught up to Jax and he soon became sleepy. We started to pack up our belongings to head back to the cottage, but we noticed that Jaxsen had laid down on the beach towel under the umbrella and started to doze off. When we realized he was asleep, we decided to let him be. This gave mommy and daddy some time to enjoy the beach without constantly chasing around an energetic three-year-old. We played catch while Jaxsen snoozed. Nick even got in a little workout after he had to chase down our umbrella when it blew away!

After the beach, we went back to our cottage and ordered some pizza and salad from Famous Pizza, another generous business that donated a gift card to us. We sat on our back deck and ate until we were stuffed. We then fed our leftovers to the seagulls that were swarming around our deck. Jax even tried giving them some lettuce from my salad, but surprisingly, they didn't go for it :)

Next it was time to get some ice cream. We went to Island Creamery where we were blown away by the amount of options on the menu. Jaxsen quickly decided he wanted chocolate ice cream, which was no surprise to us. We scarfed down our tasty treats and then headed over to Funland to redeem our tickets that were donated to us. We had a blast! We started off by playing a quick round of mini-golf...which consisted of us chasing Jax all over the course while apologizing to the families that we interrupted :) Jax was quite upset when he hit his golf ball into the last hole and realized that he wasn't getting his ball back. He spent the next 20 minutes walking around the course checking each and every hole to see if his ball magically appeared in one of those. Needless to say, he never found his little green ball.

The only reason he finally stopped running laps around the golf course was because he knew what was next on our agenda...go-karts! We were the only ones in line so we had the whole course to ourselves. Jax chose a green go-kart for me and him to get into and Nick choose another one closeby. He had such a blast racing daddy and he kept yelling at me to go faster. In the end, we won the race, although something tells me that Nick may have let us win...

After defeating Nick, we raced over to the bumper boats. Once again, Jax chose a green boat for me and him to ride, and Nick got into the boat next to us. These bumper boats were awesome because they had water guns attached to the front of them! We had so much fun chasing each other around the little pool of water while squirting each other down. I let Jax control the steering wheel, so we ended up going in circles the majority of the time. The button for the squirter was located on the steering wheel, so he was able to control that, as well. As a result we ended up spinning in circles the entire time while squirting water into the air. We may have looked silly to anyone passing by, but Jax was having the time of his life and that's all that mattered to us.

We were all starving by the time we finished up at Funland, so we headed over to Ledo Pizza to grab some dinner. Jaxsen and I split the most delicious gluten-free pizza we ever had. Jax must have thought it was lacking something though, because he poured the entire container of parmesan cheese on top of his slice. He's lucky he's so darn cute.

The sun was just starting to set when we got back to the cottage so we decided to go for a short walk down Main Street. It was an absolutely perfect evening for  a family walk. Jax kept himself occupied by counting all the stray cats that we passed by. I never knew so many cats lived in a beach town! He also liked the firestation and large ship that we passed by.

We planned on having a movie night when we returned from our walk, but Jaxsen was already getting sleepy...and so were we! We crawled into bed and tried to rest up for the following day.

We started Monday off with another breakfast of champions in the hotel lobby. We then packed up the car and headed down Main Street for our next big adventure...a private sightseeing cruise! Charlie, the captain of boat, volunteered his time to take us out on the water so that we could see everything that Chincoteague had to offer. Within minutes of setting off, we found ourselves just feet away from a small pod of dolphins! The dolphins didn't jump into the air, but we did see them skim the surface of the ocean and splash the water with their tails. We even saw a baby dolphin out there! Our captain had been taking people on cruises for over 10 years, so he was really skilled at getting close to the animals without spooking them. Jax's skill was looking in the opposite direction whenever we saw a dolphin pop up. It was so hard to get him to look in the right place at the right time, but when he did catch a glimpse of one, he was ecstatic.

We watched dolphins for about 30 minutes and then set off again to see what else we could find. Almost immediately, our captain pointed out a bald eagle that was sitting on a branch not too far from off. He turned off the engines and coasted slowly toward the shore. I quickly grabbed the binoculars so I could get a better look at him, and when I did, my breath was taken away. That was the first time I had ever seen a bald eagle in person before. He looked so regal. We then saw an osprey sitting in her nest on top of a buoy. She took off and dove down close to the water to see if she could find a meal for her babies. She came back empty-handed, but it was neat to be able to witness it.

Charlie then took us to visit the oyster farm that he owns. We were in for a shock when we arrived at the farm and saw a herd of wild horses galloping close to the water. We watched in amazement as the horses took turns entering the water and going for  swim. When they emerged from the water and got back on dry land, they rolled on their backs to dry themselves off. The ponies then started racing each other across the beach. Charlie told us that we were extremely lucky to witness the horses and ponies swim in the water because it is such a rare occurrence. He said that seeing dolphins, a bald eagle, and wild horses all in one day is a once-in-a-lifetime event.

Charlie took us back to the marina after watching the horses for a few more moments. As we were getting off the boat, he handed Jaxsen a large conch shell and told us that he found the shell on a remote beach about an hour and a half away. Nick and I thought it was a really nice gesture and knew it was the perfect souvenir for our sightseeing cruise. Jax, however, promptly told us that he didn't like the shell and that he wanted to throw back into the water. Needless to say, we hid the shell from him for the rest of the trip :)

Immediately after leaving the marina, we headed to the one spot that Jax had been talking about since we first arrived to Virginia... the lighthouse by the beach. Jax was given a kid-friendly map of Chincoteague upon our arrival to the cottage, and he instantly pointed to the lighthouse and asked when we could visit. After making him wait a few days, we finally took him over to see it in person. As soon as we pulled into the parking area, Jax got excited. We were just starting our hike up the short trail that led to the lighthouse when we ran into a little boy and his mom who asked Jax for help. The mom explained that they had seen a very small snake, and now her son was too scared to go up the trail alone. Jax agreed to keep the boy company on the short hike so that the little boy would be too distracted to think about the snake. When we arrived at the lighthouse, Jaxsen immediately started running up the hundreds of steps that led to the top. Jax was determined to climb up the steps by himself, which we were definitely thankful for!

When we got to the top, we were taken aback by the gorgeous view. We could see the beach, the ocean, the fields were the horses wandered, and even some small rivers and marshes. Jax had a blast running laps around the wrap-around balcony, but after a few moments, he told us that he was ready to head back down. We didn't want him to walk down the steps by himself because we were afraid that he might trip and fall, so Nick offered to carry him down. Thank God Nick offered because we would have been there for a few hours if I were the one taking him down!

The rest of our day consisted of a much-needed nap, fun on the beach, and more pizza from Ledo.

All three of us were beyond excited when we woke up on Tuesday because we were finally able to do the thing we came down to Chincoteague to do... see the NASA rockets! We were so excited, in fact, that we woke up a few hours before we needed to! We decided to get breakfast at a local restaurant, Mr. Paul's Kitchen, since we had some extra time. We then headed over to Wallop's Flight Facility to get our fun day started! The visitor lounge opened one hour early just so we could explore on our own, without bumping into anyone or having to wait our turn to see the exhibits. Jaxsen spent the majority of his time playing a space-themed matching game and making sand art. We then went back to the car so we could head to a different location to see the rockets. Rebecca, our tour-guide for the day, led us into a high-security, employee-only portion of Wallops. It was there that we were able to see everything that Wallops had to offer.

We first headed to see Virginia Space’s Mid-Atlantic Regional Spaceport Pad 0A, which was the launch pad where the rocket would eventually take-off. Jaxsen immediately became excited as soon as he saw a sign that read, "Danger! Explosive Hazard!" We walked up the ramp that led to the launch pad and were struck by the size of it. The pad could easily fit a few large elephants on it! We were able to walk right up to it so that we could get a close look at it. Jax began playing with some nuts and bolts that he found on the pad while Nick and I spoke with the two people who worked there. Jax asked a few questions and then said he was ready to see the rocket. So off we went!

We headed over to see the Orbital Science’s Antares rocket in the Horizontal Integration Facility. We were bummed when we originally found out that Antares wouldn't be launching during our visit like planned, but we were ecstatic that we were still be able to see it while we were there. We were led into a building that was so well-controlled that we weren't even able to bring our cellphones inside. We passed through a warehouse first, which is where the tools and parts for the rocket were kept. We then entered into the room that housed the rockets. The first thing we saw was the rocket engine. It was a large and silver and was about ten feet in length. We then saw the rocket's booster, which is the part that comes off after the fuel inside of it is used during take-off. And then we saw the main attraction... the rocket! We weren't allowed to take pictures of the rocket because it was proprietarily designed (which basically means that the design of the rocket ship was privately owned and controlled), but it was still neat being so close to it. Surprisingly, Jaxsen wasn't interested in the rocket at all. He kept saying it wasn't a real rocket because it was laying down. Since he wasn't interested in the rocket, he started looking around for something that did interest him...which happened to be a yellow "Wet Floor" sign. Oye vay!

We then headed to see the NASA airplanes and helicopters.  Jaxsen's eyes lit up as soon as we walked into the airplane hanger. We met with some of the NASA pilots, including Gerrit Everson, who guided us around the facility while telling us about each plane. They even allowed us to climb into the planes and crawl into the pilot's seat! Some of the planes we saw were the NASA P-3B, UH-1 “Huey” Helicopter, and T-34 aircraft. Jaxsen ran from plane to plane, touching everything within reach. This was definitely the highlight of his trip.

After exploring each of the planes and helicopters in this hanger, we met with a Wallops firefighter who loaded us into his firetruck and took us for a ride around the Flight Facility. As we drove past the building that housed all of the emergency response vehicles, we noticed that all of the firetrucks, ambulances, and response vehicles were lined up outside. As we passed the line of vehicles, they all started flashing their lights, sounding their sirens, and honking their horns. What a sweet surprise! Jaxsen grinned widely and started waving at all of the drivers in the vehicles, who quickly returned the wave.

We were then led to another hanger where Jaxsen could explore the Navy planes. The Navy has a Fleet Carrier Landing Practice Program at Wallops, and they graciously allowed us to climb in the Navy E-2 and C-2 aircraft. It was especially neat to visit this hanger because we were able to see the Navymen at work. Some were running in and out of their planes, others were fixing the engines and propellers, and another group was talking to their commanding officers. Almost all were watching Jaxsen as he squealed with delight while pushing buttons and counting propeller blades. I can't say I blame them!

We were then taken back to the first plane hanger in the firetruck. Our tour of Wallops was officially over, and we were sad to go. Rebecca gave us our final hugs and then presented Jax with a bag of goodies from the NASA headquarters in Florida. Inside was a stuffed astronaut, which Jaxsen immediately grabbed and held on to. He talked to his little astronaut on the entire ride back to our cottage.

After a lonnng nap, we were ready for some food! We decided to go to Captain Zach's Seafood Restaurant for our last dinner in Chincoteague. While we waited for our food, we played cornhole and Connect Four in the large seating/playing area that the owners set up outside. When the owner of the restaurant realized that we were there, he dressed up in a pirate costume and came outside to surprise Jax. Jaxsen smiled at the pirate, but was too timid to say anything to him. So instead, they played a quick game of Tic-Tac-Toe, which Jax obviously won :) By then, our food was ready so we headed to one of the shaded picnic tables and started devouring our seafood platters and corn-on-the-cobs. We then headed back to Island Creamery for some more ice cream.

After eating dinner, we immediately headed over to the "Pony Express" trolley stop in front of our cottage. Jaxsen had been eyeing up the trolleys everytime we passed one, so we knew he would love being able to ride on one. When the trolley arrived, we each paid a quarter and then followed Jaxsen to the very back which is where he decided to sit. The trolley driver asked us where we were headed, and we told him we were just going to do a round trip. We knew it would be a quick, fun way to explore the whole island. We were the only ones on the trolley for the majority of the ride, and we enjoyed seeing the parts of the island that we didn't already see, so it was a win-win.

By the time we got back home, it was too late for a trip to the beach. Instead, we packed up our water squirters and towels and headed over to the indoor pool at Comfort Suites. The water was a bit on the cold side, but that didn't seem to bother Jax, who promptly jumped in the water and started paddling from one side of the pool to the other. Nick, however, decided the water was too cold for him so he spent his time relaxing in the hot tub. Jax must have thought that Nick was getting too hot over there, because he decided to cool him down from time to time by squirting him with cold water from the pool. We spent close to an hour splashing around the pool until we decided it was time to head back to the cottage to get ready for bed. We had a long day of travelling ahead of us!

Wednesday morning arrived before we knew it. We slowly packed our bags into the car and then headed out to our back deck to enjoy the view one last time. One of the shops in Chincoteague gave us some poppers to use, so we took this time to show Jax how to use them. He was startled the first time he threw a popper on to the ground and heard the little 'pop' noise, but he quickly became excited and started throwing multiple poppers on the ground at once. I think it's safe to say we'll be buying many more poppers in our future.

We then grabbed a quick breakfast at the hotel and headed down to the beach to squeeze in a quick visit. There are many trails around the beach and we knew that Jax would enjoy riding his bike along one of them before starting our 3-hour ride home. Jaxsen had a blast riding ahead of us and running over as many monkey balls as he could. Thankfully, he became tired quickly and he agreeably headed back to the car when we told him it was time to start our drive back home. He fell asleep in his carseat almost immediately, and snoozed the entire way home. Undoubtedly, he dreamt of dolphins, rockets, and ice cream the entire way home :) 

Jaxsen's 3rd Birthday Party

We were finally able to celebrate Jaxsen's 3rd birthday with our family and friends on Saturday, April 26th. He had turned 3 about 3 weeks earlier, but we waited so long to have his birthday party because we wanted to be able to celebrate while he was on a break from his chemo. He was scheduled to finish up with Round 3 on April 24th, so we knew that the 26th would be the perfect time to have his party. We'd be able to celebrate the completion of another round AND his birthday...all at once!

Saturday was an absolutely gorgeous day. We were expecting rain at some point that day, but it held off until after his party. Thank you, Mother Nature! The temperature got up to 70 degrees, which was perfect since the party was being held at a pavilion. We had rented a huge, colorful moon bounce for his party and had a few other outdoor games set up, so we were thrilled that the weather cooperated for his special day.

I asked Jaxsen a few months ago what kind of party he wanted, and he instantly responded, "A rocket ship party!" We have no idea how/why he became so obsessed with rockets, but we agreed and I quickly started planning. I never realized how few rocket toys and decorations existed until I started planning this party! Everything I found online was either Buzz Lightyear or alien-themed. It became evident that the majority of the decorations and activities would have to be homemade. I like to consider myself a pretty crafty person, so I did not mind the challenge one bit, but this year I was a bit more pressed for time than I was in the previous years. Gee, I wonder why?? :)

On the day of the party, our guests started rolling in right at 3pm. As soon as they arrived, they were given mini rockets to play with during the party. Each one included 3 little rockets and a small, squeezable pump to make the rockets zoom. The kids had a blast seeing who could shoot their rockets farthest. We weren't able to invite as many friends as we did in the previous years because of Jaxsen's weakened immune system, so I was afraid that our party wouldn't be as much of a success, but boy was I wrong! It was so great seeing Jaxsen reunited with his little friends...many of whom he hadn't seen since his diagnosis. We had such a great group of kids at the party and everyone seemed to get along well. Those mini rockets were a great way to get the kids who didn't know each other to break the ice.

The kids spent the majority of the party inside of the moon bounce. Even the adults got in to bounce! There were always at least 5 kids in there chasing each other, having bouncing contests, playing tag, or spinning in circles. Jaxsen and I liked playing ring-around-the-rosie inside with some of his other friends. Jax also liked dragging in his Grandpa or Uncle Mike (my dad and brother) and climbing all over them!

When the kids weren't bouncing, they were doing one of the other fun activities that we planned. Inside, we had a rocket tent that the kids could climb in and pretend that they were zooming to Mars. There was also a "Make Your Own Rocket" station where kids could make a rocket using a paper towel tube, scrapbook paper, ribbon, and space-themed stickers.

Outside, there was a "Rings of Saturn" game that required the children to toss hula hoops around a big bouncy ball. There was also a "Rocket Balloon" kit that we bought online. The kit included a standard balloon pump and 85 colorful balloons that were long and slender. They seemed like ordinary balloons at first, but when you filled them up with air and released them, they made a neat noise and shot up really high into the air. They also zig-zagged a lot more than a regular balloon would! The kids had a blast chasing them and trying to catch them as they soared through the air.

We had a few rocket toys at the party too. The kids took turning playing with a stomp rocket and chasing the rockets across the field. There was also a large red rocket that shot straight up into the air. At any given moment, guests had to watch out for zooming rockets and balloons that were soaring past them. They always had to be on their toes! It was a blast!

When guests got hungry, they snacked on our space-themed treats. We served Rice Krispy Stars (treats shaped like stars), Cheesy Asteroids (cheeseballs), Saturn's Rings (fudge cookies that were shaped like a ring), Shooting Stars and Flying Saucers (crackers, pepperoni, and star-shaped cheese), Black Holes (mini chocolate donuts), Full Moons (vanilla wafers), Planet Pops (swirly round lollipops), and Out of This World Chips & Salsa. We also served popcorn, fruit salad, and hotdogs. Guests definitely didn't go hungry at this party!

After about an hour and a half of snacking, bouncing, and shooting rockets in the air, we gathered everyone around one of the outdoor picnic tables so we could sing Happy birthday and eat cupcakes. We had planned on singing inside, so that we could eat cupcakes under the planets that were hanging from the ceiling, but it was such a nice day so we couldn't resist taking the party back outside. Jaxsen usually loves being the center of attention, but as soon as his family and friends started singing to him, he smiled sheepishly and ducked his head down so no one could see him smile. After we sang to him, Jax wished for a car and then tried blowing out his sparkler candles. He tried for a while, but eventually needed some help, which mommy and daddy were more than willing to give! We then handed out the cupcakes out and dug in! We made vanilla cupcakes with blue icing and yellow star sprinkles.

Jaxsen decided that it would be more fun to start a cupcake food fight, so he took a cupcake and smashed it right into Nick's face! Everyone got a kick out of it and before long, some of the other kids started rubbing icing on their own faces. Everyone looked like little blue aliens!

When everyone was finished with their cupcakes, we hung the pinata from one of the beams in the pavilion and had all of the children gather around. We let the birthday boy make the first few swings, and then had the rest of the kids take a turn based on their age. There were about 9 kids (aged 2-7) who tried their hand at whacking the pinata open, but none of them were able to smash it! The kids all had another turn at hitting the pinata and after a few minutes, the pinata started opening a little. The kids kept on whacking, and candy started falling out. The pinata itself was pretty invincible, because the candy was all smashed up, but the pinata had hardly any damage to it! Eventually, we just ripped the pinata open before all of the candy was ruined. The kids all pounced at the candy the second it dropped to the ground. They were like little vultures!

We spent the rest of the party bouncing on the moon bounce and talking with our family and friends. It was getting late though and our guests started heading out one-by-one. It was a great party and we couldn't have asked for a better day. The weather was perfect, our company was amazing, and the atmosphere was fun and laid-back. It was so great watching Jax play with his buddies, and we enjoyed catching up with some of our friends that we hadn't seen in a while. We have been so busy since the diagnosis that we haven't had much time to socialize, so we definitely took advantage of this time to talk with our friends.

We are so glad that Jaxsen had a blast at his party and we were thrilled that we were able to regain some normalcy into our lives by having a birthday party. His world was turned upside-down in January and he has spent the last three months being poked and prodded on a weekly basis. If anyone deserved a fun day playing with rockets...it was this little dude! Having a party was the best way to celebrate the end of a round and the beginning of another year of life! Here's to hoping that year 3 for Jax is just as exciting and eventful as the previous ones. Although we could do without anymore life-changing surprises ;)

Round Three of Chemotherapy: Interim Maintenance (March 14 -April 24, 2014)

Immediately after the second round of treatment, the third round began. This round, called Interim Maintenance, brought both relief and stress. It was less invasive in terms of procedures. He only received one spinal tap this round and there was no need to extract bone marrow. I know this didn't mean too much to Jax because he sleeps like a baby right through every procedure and wakes up unbothered by the intrusive procedures. But it was nice that Meg and I did not have to watch the doctors put Jax into a abrupt sleep; going from fully awake and bursting with energy to suddenly going limp in our arms. It was becoming an unwelcome weekly routine for us, so it was nice to take some time off from that.

Round 3 brought us stress because of the chemotherapy regiment that Jax was put through. As part of Interim Maintenance, Jaxsen was subjected to increasing doses of a toxic chemotherapy drug called Methotrexate. The duration of this round was 41 days. On day one, Jax received two types of chemo, one through IV and another pushed directly into his port with a syringe. Prior to receiving the drugs, his blood counts were analyzed to make sure that his counts were high enough to handle the treatment. This happened every 10 days until the end of the cycle.  Each visit, the dosages of chemo were raised to increase the effects of the drugs, which could have also pushed Jax to the limit of his tolerance.

The doctors warned us that the progression of this round could start to have effects on Jax's energy level and could make him sick. This worried us, but it didn't seem to have any effect on our brave little man. He paced his way through the hospital visits and handled the extra meds well. The doctors said that this part of treatment can be so intense that some patients cannot make it to the end because of the increasing doses. But Jaxsen proved yet again to be a trooper, and he responded well to the increasing doses of chemotherapy. You wouldn't even know what Jaxsen was going through if you didn't already know his situation, because he acted perfectly normal for the entire 41 days.

Jax successfully made it through the entire treatment without a hiccup. The only thing that concerned us was that Jaxsen was starting to get some unexplained bruises on his legs and lower stomach. The docs quickly comforted us by telling us that symptoms like that were common during this stage because the chemo was demishinishing his supply of platelets. When platelets are low, patients tend to bleed or bruise more easily than usual. Jax also had another case of "silly legs" after his only spinal tap of the round. This time it wasn't as severe, and he only had trouble walking for a few hours. He soon regained his strength and balance and was off running around in no time. These were side effects that were welcomed, because they were far better than some of the worst case scenarios.

Another thing that we noticed during this round was that Jaxsen was becoming increasingly more sensitive about his chest. He is convinced that every time his shirt comes off, someone is going to try to access his port. It's always a struggle when it comes time for him to take off his shirt to get a bath, put on pajamas, or get dressed for the day. We have to constantly remind him that we aren't going to hurt him, and even after a few moments of gentle persuasion, he's still hesitant to let us take off his shirt. It's heartbreaking to see our sweet, little boy be so bothered by something. Especially something that is going to be a part of his life for the next 2 and a half years.

With the bad also came some good. Jax had his 3rd birthday and birthday party during this phase. His birthday fell at the beginning of his treatment and we celebrated the occasion with family. He also got to take a trip to the birthday closet at the hospital. It's basically a room filled to the brim with toys that any little boy or girl could only dream of having. Each patient gets to visit the closet on their birthday and pick out a toy. Needless to say, it was a prolonged trip filled with "I want that" and "ooh, what's that," but in the end Jax picked a nice set of small monster trucks.

Jax also took two trips during this round. The family went to New Jersey for Easter and Ocean City on the weekend after Jaxsen's birthday (which we wrote about in another blog post). Meg took Jax up to NJ to visit her family on Easter weekend because they hadn't seen him since the diagnosis and they were all anxious to give him some lovin'. On Saturday, they went to a huge Easter egg hunt that was being held at the church where Meg's Aunt Helen worked. Jaxsen quickly mastered the art of finding all of the eggs, but instead of putting the eggs inside of his basket, he opened them up, dumped the candy into his basket, and then dropped the empty egg back onto the ground. Such a stinker. The next day (Easter Sunday), they had another Easter egg hunt in Aunt Helen's backyard. Jax had a blast running around with Lia, Albina, and Maria (his 5-year-old aunt and little cousins). The visit to NJ was a short one, but Meg and Jax still had enough time to relax and catch up with their loved ones.

This round was filled with many more happy moments. It was during this round that Jaxsen was given the opportunity to paint with the elephants from the Barnum & Bailey circus. We also had a photoshoot with the amazing Jeff Will, who turned one of the photos from the shoot into a HUGE canvas that was going to be displayed at our St. Baldrick's event. However, due to some unforeseen circumstances, our canvas arrived one day AFTER the event! We were able to meet up with Jeff a few days later to get the canvas from him, and boy were we blown away! It looked amazing, and we're so thankful that Jeff chose our family to honor at the event. We will cherish that canvas for years and years to come!

Yet another happy moment was the arrival of Jaxsen's cape from Capes4Heroes. He was even given a certificate of superhero status! Capes4Heroes is an organization that sends hand-made capes to ill and disabled children to help them regain confidence and feel like superheroes. Jax was so excited to wear his new cape and go zooming around the house. Mommy and daddy both got a good workout tossing him up into the air so he could feel like he was flying. 

Although this round was tough on Jaxsen's little body, he has proven once again to be a trooper. With the support of our family, friends, and the wonderful foundations that we are a part of, we have made it through another round...all while keeping smiles on our faces! 

Jaxsen's First Trip to OC

Shortly after Jaxsen's birthday, we were treated to a mini-vacation for some much needed R&R. The Believe in Tomorrow foundation generously gave us a room in their House by the Sea respite where we could relax and unwind all while having a blast at the beach. Believe in Tomorrow is a foundation that provides respite housing services to critically ill children and their families. Their goal is to send families away to one of their clean, comfortable houses to help them rejuvenate and reconnect. They know how important it is to have time to relax and be together in a stress-free environment during the child's exhausting medical treatment. We were so thankful to be on the receiving end of this amazing organization.

It has been a crazy year since Jax's diagnosis, with  frequent trips to the hospital and a jam packed schedule of events for cancer awareness and  research. It has therefore been so difficult to find some time to just sit back, decompress, and relax. So, needless to say, we were all very excited when we were given the opportunity to go the beach and take in the sun. The whole week leading up to the trip, Jax would constantly talk about the beach and he kept asking, "Can we go to the beach now?"

It was Friday, time to head out on our great ocean adventure. We were all packed and ready to go...with enough stuff to stay a month! Jax was so excited that he stayed awake during the entire 3-hour-trip. He watched in amazement as we towered over the bay while crossing the Key and Bay bridges. We played games like I Spy to pass the time until we reached the bridge to Coastal Highway, which is when I queued up the Jurassic Park theme song (yes, we own the soundtrack because of someone's obsession with the movies) to listen to as we made our way from the inlet to our destination on 66th Street.

As we arrived to the beach house and made our way up to our room, we were greeted by a bunch of sea critters scattered throughout the walkway. We opened the door to our house to find a cozy room with warm, welcoming colors and a basket filled with toys and fun activities for us to do during our stay. After we got unpacked and settled, Jax took a quick nap while Meg made a schedule so we could pack in as many activities as possible. As soon as Jax woke up, we made our way down to the boardwalk and set up camp on the beach.

    

The weather wasn't really ideal for early spring, but we didn't complain. We were all wearing pants and hoodies to stay warm, and even though the sand had a chill, it felt good between our toes. This was the most vacant we had ever seen the beaches there. It was good for Jax though. He could run around wherever he pleased and we didn't have to worry about anyone bothering him.

Jax had a blast. He filled up his dump truck with sand and pushed it all over the beach while Meg and I played catch. We made the best of the weather we were given. Since it was windy, we decided it would be a perfect time to fly his kite. The line was unwound all the way and the kite was flying way above our head. Jax did a good job of piloting his first kite... until he thought it would be more fun to let go of the string and watch daddy run like a madman to catch it before it hit the only other family on the beach!

After an hour or two, we decided it was time to get some food in our bellies. Believe in Tomorrow treated us to a meal at The Dough Roller and ice creams at Dumser's. It was perfect ending ending to our first day at the beach.

The next day, Jaxsen decided we should go back to the beach to finish playing. So we began our second adventure in the sand, but this time we went closer to the inlet so Jax could see the giant Ferris Wheel and walk under the pier. Once we arrived, Jax started running all over the beach while pushing his dump truck.  

           

He finally lost steam after about two hours later, so made our way to Thrashers for a quick boardwalk snack. While eating, Jax saw all f the lights and heard the sounds of the arcade, so we went inside where we played games, won tickets, and even posed for a photo-booth shoot. Jax ended up leaving the arcade with three bouncy balls, a rubber snake, and a snorkel. His charm got him more than the 35 tickets we earned. He only had enough for one bouncy ball, but the lady behind the counter couldn't help but give Jax all that he wanted.

On our way back to our house, we stopped at the indoor pool at the Holiday Inn, which was conveniently located next door to the beach house. We had the whole place to ourselves, and there was even a one-foot-deep kiddie pool just for Jax. We brought water squirters which we used to soak each other from across the pool. Jax even swam all by himself... with a little help from his floatie. He could not stop smiling and laughing. It was getting late in the afternoon though, and the little man needed a nap. So we gathered up all of our pool toys and made our way back to our house so Jax (and mama and daddy) could rest.

After nap time, it was time for a nice dinner at Mancini's. Believe in Tomorrow had reserved a table and treated us to an Italian dinner for the family. The atmosphere was comfortable and homey, and the food was delicious. They even had gluten-free pasta for Jax and Meg. We were all stuffed to the gills, so we went to the boardwalk to chase Jax around and burn off some of those calories. We played in the sand again and we even got Old Time photos taken.  We all posed as pirates with swords and treasure. This would sound fun for pretty much any three-year-old boy, but Jax wanted nothing to do with it at first. His attitude changed once he was given his own pirate treasure, and you would never guess he was sad at all by his silly face in the picture.

We were all ready to head in for the night to relax. On the way home we stopped at Dumser's again. It was too hard to resist their yummy sundaes and milkshakes. We had planned on having a family movie night, but it was too late and we were all beat once we got settled in. Day two was a success.

Before we knew it, it was our last day at the beach. The time seemed to go by in a flash with all the fun activities that Believe in Tomorrow had planned. We woke up early with Jax and packed all our stuff and cleaned the room, then we went back to The Dough Roller for a big breakfast. We fueled up for our last hoorah.

There was a dinosaur-themed mini-golf place right next door to The Dough Roller, so of course we took our little future paleontologist over to see the dinos. He loved running around and telling us the names of the dinosaurs that he knew. We had planned on only looking at the dinos instead of playing an actual game of mini-golf, but the girls behind the counter gladly gave Jax a club and ball, free of charge. I quickly taught Jax how to play. He was a natural! He even got a hole-in-23 ;)

After we visited all of the dinosaurs, we made our way to the boardwalk for one last visit. We rented some bikes and enjoyed a brief bike ride on the boardwalk. It was so nice to be able to go for a family bike ride  right next to the ocean. Jaxsen soon decided that he would rather play on the beach than ride bikes though, so we returned our bikes and made our way down to the ocean.

Jaxsen had so much fun getting as close to the freezing water as possible, and then running away before it touched him. He even dragged poor mama into that game, although she wasn't as good at it as he was, and her feet got soaked! We then spent some time digging in the sand and spelling words with shells. We didn't want to leave the beach, but it was getting late in the afternoon and Jax needed his nap or else he would soon be grumpy. We reluctantly packed up all of our belongings and slowly made our way back to the car. We were sad to leave, but we were taking with us so many memories that are definitely going to last a lifetime. Let the countdown to our next family vacation begin!