Icy Delights Fundraiser for Jax!

The Icy Delights location in Dundalk is holding a fundraiser to benefit Jax!

The fundraiser for Jaxsen will be held from 12-9pm Saturday, March 15th at the Dundalk location, 7812 Wise Ave, Dundalk, MD 21222, (410) 282-2020. 100% of the proceeds will be donated to Jaxsen. Please come out with the family and enjoy a yummy snowball treat!

***Share any Icy Delights status about JAX on Facebook and you will be entered into a drawing for free snowballs for the month of April!***

An Exciting Visit From Our Friends at the Golden Ring Fire Station

After coming over to Nana’s house in the evening and shortly after daddy got home from work, Jax was greeted by a blaring siren and flashing lights! That’s right, the Golden Ring Fire Department graciously sent out one of their newest fire engines and an ambulance for Jax to explore. Adam Lublinsky was the man behind the operation. (He is the neighbor of three of Jax’s little friends and a brave firefighter.) After hearing about Jaxsen’s story, he decided that he and the rest of the station would come pay Jax a visit to brighten his day.

Jaxsen was so excited when he heard the roar of the siren and twinkling, red lights. We had to rush outside to see what the commotion was. The vehicles stopped right out front of the house. He was a little bit nervous when everyone came out to say hello, but his nerves quickly turned to curiosity when Adam started to give him a grand tour. Adam explained the job of each of the many knobs, levers and valves to Jax, Mama, Daddy, and Nana, but Jax was more interested in figuring things out by trial and error. He even got help lower the big ladder that the firefighters use to climb though the attic of burning houses. When we got to the back of the engine, he started turning a release wheel and almost opened the flood gates to about 10,000 gallons of stored water!

Jax made his lap around the big truck and then went over to the ambulance. This didn’t last long though, since it didn’t have as many lights and sounds. When Jax stepped off of the back of the ambulance, the firefighters lit up the neighborhood by flipping the switch and illuminating the endless array of red and white lights. They even sounded the siren, which promptly made Jax cover his ears and say “Hey, dat's loud!”

Before the firefighters left, we snapped a quick photo to commemorate their very thoughtful gift to Jax. Then the trucks left with a thunderous roar. Jax was all smiles when we came inside and ran right to his big fire truck toy, which he continued to roll around for the rest of the night.

Results of the 2nd Bone Marrow Aspiration

Dr. Fixler called a few days later with the results of the bone marrow aspiration. He told us that they discovered that there were no Leukemia cells present in his system. Woohoo!! This means that less than 0.05% of the cells in his system were Leukemia cells. Jaxsen came a long way in one short month because when he first arrived at Sinai, more than 90% of his cells were Leukemia cells. Although he made such great progress, Jaxsen will still be in maintenance therapy for the next three years to ensure he doesn't relapse. His path to full recovery is still long and will unfortunately be filled with weekly trips to the hospital for chemo and procedures to treat and monitor his condition. Nevertheless, Jaxsen has been responding well to his treatment and we couldn't be happier!

Going on a bike ride to celebrate the good news!

Jaxsen's Fundraiser at the Epiphany Church

Soon after we shared the news of Jaxsen's Leukemia with all of our friends and family, one of my good friends, Kelly Montgomery, told us that she wanted to organize a fundraiser for Jaxsen to help us raise money for his medical bills. We graciously accepted her offer and by the next morning, things were already rolling! 

Her church, Epiphany Lutheran The God is Love Church, agreed to let us use their recreation hall for the fundraiser, free of charge. Kelly's mother, Cindy Fields, agreed to sponsor the event. Before long, we had a DJ and face painter who both agreed to donate their time to the fundraiser. The face painter, Fantasy Artz, even agreed to collect donations for her work, and then give us 100% of the profits. A local company gave us a moon bounce at a discounted price, and friends and family all agreed to donate food or drinks to the event. Each day, we received more and more donations from local businesses for both the raffle and the silent auction. 

My cousin Amber drove down from New Jersey the day before the fundraiser and spent the night so that she could help us prepare for the event. She was a huge help in wrapping baskets for the silent auction, setting up tables, blowing up balloons, and most importantly... keeping me sane! We arrived at the fundraiser on February 9th about an hour before it started and quickly got to work setting it up. Nick, my dad, stepmom, brother, sister, and Kelly's whole family were already there and hard at work.

Right at 3pm, people started flooding in the doors. We didn't even know half the people who came to the event! They were just kind strangers who wanted to support a good cause. We were amazed at the amount of family and friends who came to the event.  I got to see some of my old coworkers, bosses, babysitting families, neighbors, friends of friends, family members from all over, Jax's teachers, and friends from elementary school, middle school, high school, and college. I think it's safe to say that no one has a better support system than Jax!

We spent the majority of the fundraiser catching up with our loved ones. While Nick and I were socializing, my brother, Mike, was making sure everything was running smoothly with the silent auction, my dad, Pat, was selling raffle tickets, my stepmom, Juvy, was collecting and selling tickets at the main door, and my friend's daughter, Izzy, was putting her Girl Scout skills to the test by selling homemade Leukemia ribbon keychains that Nick made.

About an hour and a half into the event, Jaxsen made his grand entrance. He was driven to the hall and ushered in by Nana and Aunt Gail. He wasn't able to attend the entire fundraiser because he couldn't be around large crowds for an extended period of time due to his compromised immune system. As soon as he walked into the hall, he started receiving hugs, handshakes, and high fives from all of his friends and family members. The only thing that Jaxsen was interested in, however, was the meatballs! He had been off the steroids for a few days, so he wasn't as hungry as he once was, but he definitely still had an enormous appetite!

After Jax finished eating, we glanced outside and were surprised to see that it was snowing quite a bit. It was snowing very lightly at the beginning of the fundraiser, but what started as a slight dusting on the ground quickly turned into a few inches. We were worried about the safety of our guests, so we immediately decided to announce the winners of the raffle and silent auction so that everyone could start heading home before the roads got even worse.

Nick, Jaxsen, Amber, and I made our way to the front stage to announce the winners. Nick said a quick hello to everyone and thanked them all for attending the fundraiser. Amber then took over the mic so that Nick, Jax, and I could focus on the raffle. We had Jaxsen choose the winning raffle ticket out of each little basket, which he then gave to Amber so she could announce it. Jaxsen quickly lost interest in this though and decided to run off stage in the middle of the announcements. What a stinker! Thankfully Uncle Mike was there to keep an eye on him while Nick and I were on stage. 

After we were finished announcing the winners, everyone started packing up their belongings and heading out. The snow was really starting to come down and they wanted to get home before it got any worse. We were sad to have to end the fundraiser early, but we wanted our guests to get home safely, so we quickly said our goodbyes and starting cleaning up. Overall, we had a great turnout at the fundraiser and we were thrilled to see a mix of both familiar and unfamiliar faces. Jax was surrounded by so much love and kindness that day and we couldn't be more appreciative of everyone's support!

Among the businesses that donated are:

• B&O Railroad Museum
• FUNdamentals of Baltimore
• Fantasy Artz
• DellaRose's Avenue Tavern
• Towson University
• Pizza John's
• Kids First Swim Schools
• Soft Touch Photography by Cynthia, Inc.
• Christopher J. Salon
• Christie's Creative Creations
• Pete's Cycle Co.
• That Bouncy Place
• Pump It Up of Owings Mills
• Hallmark
• Wockenfuss Candies

A few of our family members and friends also donated some items from...

• Thirty-One
• Stella & Dot
• Mary Kay
• Scentsy
• Olive Garden
• Port Discovery
• Velata

We are beyond grateful for all of the generosity that was shown to us by our loved ones!

An Unexpected Trip Back to the Hospital

On Friday February 7^th, we went to the hospital for Jaxsen’s weekly appointment. He needed a lumbar puncture to get chemo in his spinal column and also a bone marrow aspiration. After he woke up from the anesthesia, Jax wanted to be carried around and didn't seem to want to walk anywhere on his own. He didn't complain of any pain, but seemed to stumble whenever he walked. The doctor said that this was a side effect of his spinal tap, and that it should not last more than a few hours.

The next day, Jaxsen was having trouble walking and balancing on his own. Alarmed, we called the clinic, and Dr. Wiley instructed us to get Jaxsen over to the ER so he could be checked out. He said that it was probably nothing serious. This relieved us a bit, but it was still hard to see Jax regress and stumble around like a toddler learning to walk for the first time. Although mommy and daddy were upset, as  usual, Jaxsen made the best of the situation and said, “It's ok, I just have silly legs!”  Sometimes he’s the one keeping US straight.

We arrived at the ER shortly after we got off the phone with Dr. Wiley. The ER was unusually quiet that morning; I could count the number of people waiting with a single hand. It didn’t matter though, because they were expecting the little man, so we had an express ticket to get our own room. We were greeted promptly by the nurses and as usual, Jaxsen received brand new toys to play with and to help take his mind off of things.

The ER doc came in and did an initial evaluation. She didn’t find anything concerning, but ordered Jaxsen to have x-rays done of his hips, spine, and legs, just to be sure. They took a ton of pictures of his insides from many different angles. I stood with Jax, wearing a silly lead apron while Megan was watching with the x-ray technician behind the barrier wall. The x-ray machine was large and intimidating, with wires running from wall to ceiling, but Jax was a brave boy and didn’t even flinch.

After Jaxsen's internal photo shoot, Dr. Wiley came in to assess the photos. To our surprise, he didn’t notice any problems with his bones or muscles, but he did see that Jaxsen was extremely constipated. We saw the pictures for ourselves and the constipation definitely wasn't hard to miss!

It turned out that Jax had a sacroliliac strain as a result of the earlier procedures and a case of constipation. This was nothing to be worried about. He was discharged with a recommendation to relax and try to get more fiber in his diet. 

Round One of Chemotherapy: Induction (January 9 - February 7, 2014)

The first round of chemotherapy lasted 28 days. During this phase, Jaxsen was required to take liquid steroids and anti-nausea medicine twice a day. Jaxsen absolutely HATED the steroids and often screamed while taking them because they were "yucky". Nick and I disliked them too, but for a different reason. The steroids made Jaxsen lethargic and moody. He quickly became  uninterested in the things that he used to be obsessed with, like coloring, doing puzzles, and playing with his cars and trains. All he wanted to do was sit on the couch and watch either "The Polar Express" or "Toy Story 3". The steroids also made him extremely hungry. It wasn't unusual for Jaxsen to eat cereal, noodles, crackers, string cheese, pepperonis, and noodles...  for breakfast.  His favorite foods to eat during this phase were pizza, mashed potatoes, chicken tenders, and noodles. The steroids made him so hungry that he woke up 2 or 3 times a night asking for food. We had many restless nights which turned into  long, stressful days.

Another part of Jaxsen's treatment included seeing his oncologist once a week. His first outpatient visit was scheduled on Friday, January 17, which was just a few days after we were discharged. Jaxsen was scheduled to get a lumbar puncture (LP) with Dr. Unguru. We were informed that only one parent would be able to walk with Jax back to the operating room because this procedure had to be done in the general operating room instead of the Children's Diagnostic Center like usual. We decided that I would walk Jax back to his room, so the doctor gave me a disposable full-body scrub set to wear, complete with a hair net and booties. Jaxsen got to wear a silly looking hair net too. Jax and I said good-bye to Nick and then sat on his hospital bed so we could get rolled back into his operating room. We were rolled into a very large room with lots of strange looking machines and contraptions. Jax was sitting on my lap when the anesthesiologist entered the room. He gave Jax the anesthesia via the port in his chest, and Jax quickly fell asleep. I gently laid Jax down on the operating table next to the bed and leaned down to give him a kiss. When I leaned down, I was shocked to see that Jax still had his eyes wide open. I whispered to Jax that it was time to close his eyes and go to sleep, but he didn't flinch. I tried using my fingers to close his eyelids, but that didn't work either. I tried desperately for a few more moments to get Jax to close his eyes, but nothing worked. Eventually, one of the assistants gently took me by the arm and told me it was time to leave. I looked Jaxsen in the eyes one last time and told him that mommy and daddy were going to be there with him when he woke up. The doctors ensured me they would take care of him, and they gave me a kind smile as I turned to leave. I tried to hold my tears back for as long as I could, but as soon as I saw Nick in the waiting room, I broke down. I told him I never wanted to see Jax like that again.

The procedure itself only took about 20 minutes, but it took Jax about an hour to wake up because the lumbar puncture overlapped with his naptime. Jax was very groggy when he was in the process of waking up, but as soon as he heard Nick and I  mention mashed potatoes, he perked right up! The nurse needed to monitor Jax for about 15 minutes after he woke up to make sure that he was acting normally after receiving the anesthesia. As soon as she gave us the OK, we were able to go home and relax.

The next week, Friday, January 24th, Jax needed another dose of chemotherapy. Thankfully, he only needed a type of chemo called Vincristine, which was given to him via his port, rather than through a lumbar puncture. Jax didn't like us taking his shirt off, because he doesn't like looking at the bruises and scars on his chest, but as soon as the nurses accessed the port, he couldn't peel his eyes away. He loved asking them questions about what they were doing and what each medicine/saline did. He even helped push the medicine from the syringe into his port. The nurses loved how curious he was, and so did mommy and daddy! Before we left, one of the nurses told me and Nick that we were her favorite parents because we got along so well and we obviously loved Jax a lot. That definitely made us feel good after spending a long, stressful morning in the clinic.

  

The following Friday, February 7th, marked the end of his first round of chemotherapy. By this time, Jaxsen had gained 7 pounds as a result of the steroids, and he was extremely indecisive and moody. For this appointment, Jax needed a lumbar puncture and bone marrow aspiration, just like he did for the first day of Round One. As always, Jax needed the lumbar puncture so they could insert the chemo directly into his spine. This was to ensure that Leukemia cells would not enter the spinal cord. He needed a bone marrow aspiration because the doctors wanted to compare the amount of Leukemia cells that were present in his system on the first day of Round One to the amount that were present in the final day of Round One. This was essential in order to determine whether or not Jaxsen was responding well to the treatment. We were sent to the Children's Diagnostic Center to have these procedures done. Jax was put to sleep by Dr. Zuckerburg while he was sitting in my lap. Like always, I cried at the sight of seeing him receive the anesthesia. Dr. Fixler was the oncologist in charge of these procedures, and he gave Nick and I the opportunity to stay in the room to watch the procedure, if we chose to. We decided to stay in the room with Jax, mainly because we wanted to be there with him in case anything happened. Dr. Fixler positioned Jax away from us though, so we couldn't see the lumbar puncture or bone marrow aspiration get done. The two procedures only lasted about 20 minutes, but Jax slept for a lot longer than that because it coincided with his naptime again. As soon as he woke up, he immediately asked for pizza. Dr. Fixler told us that he would call us in a few days to tell us the results of the bone marrow aspiration. We were then given the OK to leave, so we packed up our belongings and headed home to pig out.