Axel B.

Axel is a 3 year old boy, full of energy and love. He enjoys spending time with his older brother. He loves to sing, dance, and color. He is a goofy guy that is always laughing.

In mid April Axel started waking in the night with “night terrors” but was otherwise his normal playful self. In May he started complaining of abdominal pain and neck pain. His parents had him evaluated and common things being common he was diagnosed with constipation and torticollis.

On June 2nd Axel developed foot drop and was seen urgently by a specialist where he underwent additional testing. He was found to have a tumor on his spinal cord compressing the surrounding structures and causing neurological deficits. He was airlifted to a Nicklaus Children’s Hospital where he underwent an emergency neurosurgical procedure to remove the tumor from his spinal cord. They were able to remove 60% of the tumor, but there is still 40% left over concrete to his spine.

On July 3rd we received the final diagnosis of a rare cancer called Spindle Cell Rhabdomyosarcoma. We were then given the "Plan" which will entail chemotherapy and radiation for the next 10 months. 

Axel is also in PT & OT to help him sit up and eventually walk again after his spine surgery. This has not been easy, as the side effects for chemotherapy is being tired and possibly receiving neuropathy pain in the legs, feet and or hands. 

We are currently on round two of his chemo treatment plan, and after round three is over he will start radiation treatment for 5 weeks, and then 6 more rounds of chemo again. 

Axel is a sweetheart and a fighter, he is always happy regardless of the obstacles he has faced, and will continue to face. The treatments are intense, invasive and time consuming, from the back and forth driving to Nicklaus Children's Hospital, and St. Mary's, to the weekly test's to make sure his levels are up to par. This journey is tiering, but we are very optimistic, and we all know this will not be forever. 

We are grateful for our "village"  being our family and friends that have been there for us every step of the way. From the donations to the toys, food and love sent our way. We are so unbelievably appreciative of the kindness received.

Chasin A Dream Foundation has been super supportive, and caring throughout this journey. From the amazing gifts for Axel, to the guidance of Lori and her team. We are grateful to have met everyone along this journey. We are eager for Axel to ring the bell, and finally be free from this diagnosis!

Update September 2024:

Axel has finished 3 rounds of chemo so far, and is starting weekly radiation treatment at the Miami Cancer Institute on October 2nd. 

Radiation Treatment has 28 fractions, which is 5 weeks in total, additionally he will have a low dose of chemo weekly to make sure the cancer isn't spreading. 

Axel's current status with his walking has increased exponentially. He is now crawling around the house, and standing up and taking a few steps to nearby items around the house. 

He was also given a posterior walker from his PT at Children's Therapies to help with the next phase of walking. 

Once radiation is done he will have 6 more rounds of chemo, and then the grand finale of ringing that bell!

Here are also so up to date photos of Axel during his stay at NCH.

Update November, 2024:

On 10/2/24 Axel had his first day of radiation, Axel freaked out at first but they gave him his anesthesia and he passed out. There were no side effects. Additionally we were staying with my sister in Fort Lauderdale, the drive was an hour back and fourth but it wasn't terrible. We were grateful the first couple of weeks started off smooth.

Once week three came along it got a bit more intense. We were authorized at week one to start on chemotherapy again. The first dose of chemo was a breeze for Axel, and the anesthesia was still easy to endure for him, but once week three came along everything got a little harder. 

We noticed Axels temperament changed, he was getting more agitated each day. This is the be expected when it comes to radiation and anesthesia.  Not to mentioned he couldn't eat prior to radiation "MPO", but chemo also wouldn't allow him to enjoy food. He developed a couple mouth sores, and his throat was hurting from the proton therapy radiation, and if he would eat then it wouldn't taste good enough for him - Metal taste from chemo. 

Lastly the radiation gave him a cough from the build up in his esophagus, he would hack up a lot, and eventually throw up a ton each day, causing him to lose weight.  

The nurses at Miami Cancer Institute were amazing, they helped as much as they could to keep Axel comfortable and happy. They truly went above and beyond, and we couldn't be more grateful for their professionalism and their efficiency. If Axel wanted to eat something they would do everything and anything to find that food he was craving and get it to him fast! 

We fed him yogurt, ice cream, fruit and egg nog, really anything with heavy fat that would help him gain weight. This helped him and he has sustained his weight, isn't deterred from food, and has since been able to eat a lot more food options. 

Thankfully on November 8th it was his last fraction of radiation; we celebrated as a family. His aunt, uncle, papa, brother, daddy, mimi and mamma were all cheering him on! 

Since the last day of radiation his throat is healed up to the point where he doesn't vomit anymore, he is eating a lot, and he is a happy guy again. He was so excited to go home and get back into a routine.