Leonardo’s Story

Site created on April 20, 2022


*** PLEASE NOTE**  DONT USE THE TRIBUTE SECTION***
If you are making a tribute donation in honor of Leo to keep his site going, the info presented is slightly misleading. A tribute goes directly to website which is a non profit. The misleading part is $30 a month is not required to keep his site going, the site is completely free. If you wish to donate to Caringbridge by all means do so, if your intentions are for Leo please use avenues below!

Venmo
https://account.venmo.com/u/Caroline-Wai324

Cash app
https://cash.app/$Carewai24


SENDING TO THE FAMILY:
If you wanted to send anything to Leo or the family, please mail it to the below address:
 
Leo Wai
6024 palomaglade dr
Lithia,FL. 33547


Thank you ❤️



Around April 1st 2022 Caroline noticed that Leo was starting to complain of headaches almost everyday. There was a couple times between maybe February and March that she had noticed that he would complain of headache but it would be after crying and was very random.  At the end of  March of 2022 Leo fell, hitting his head hard on the cement and also fell down 5 wooden steps (boys will be boys).  From that point forward the frequency and severity of his head pains increased to the point where the week of April 11th 2022 it was hurting daily for 30 minutes to an hour.  After consulting with Leo's primary physician we decided to schedule an MRI.  The earliest that he could be seen was early May 2022.  After discussing we felt that was too long and Caroline decided to take him into the ER ( St Josephs, where she works) the next day April 14th 2022.  They were able to preform an MRI and it established there was a mass in his cerebellum, but it appeared to be accessible.  Mid day on the 14th Justin made his way to the hospital.  In the ER we were introduced to the Neurosurgeon that would be preforming his surgery.  The MRI gave him confidence in his ability to resect (remove) the tumor .  After waiting in the ER we were transferred to the Pediatric intensive care unit ( PICU) so Leo could be monitored closely.  We then met the the neuro-oncologist who has a connection with St. Jude's (the largest child cancer facility in the world) and she tried her best to prepare us for what could lie ahead. She explained that once the tumor is removed it would be sent for pathology where  it would spend up to one week in St. Joseph's lab before being shipped off to St Jude's for a week.  Once completed we would know what kind of tumor it is and what his plan of treatment will be. The surgery was scheduled for 7:30am the next day, less than 24 hours after uncovering the brain tumor. That night Leo was told he could eat and so of course he housed a whole flatbread pizza and half of a salad and was still asking for more! He didn't want to disappoint his audience haha.


April 15th 2022 we both woke up early and were anxious for the day to come.  He was wheeled out of the ICU at 8am and was heading to the operating room.  An hour later we were notified that the surgery had commenced.  We were told the surgery would take 3 hours.  At around 10am we were notified the surgery was going well and he was stable.  We breathed a sigh of relief but knew there was still 2 hours left.  At 10:45am we were notified that the tumor had been removed and now the surgeon had to stitch him back up.  11am passed, 1130am, 12pm....  Finally, the surgeon came in to debrief us on the surgery.  The entire tumor was removed intact and there were clear margins around the tumor.  Overall, the surgery was successful.  We were notified that Leo would come back to the ICU intubated  (with a breathing tube) as he waits for a post operation MRI.  While in the ICU, intubated he threw up several times the food he ate almost 16 hours before.  The nurses were on top of it despite a very high ICU census.  Around 6pm he was finally taken to get an MRI of the spine and skull.  The purpose of this was to identify if there was any spread  into his spine and to see if the surgeon retrieved all of the tumor.


That evening Leo was not a happy camper.  He was tired and in pain.  The plan was to extubate ( remove the  breathing tube) after he returned from MRI, so all the sedation medication was turned off. Of course he decided that would be a good time to catch up on some sleep and he wasn't waking up enough for them to remove it. Caroline sat anxiously watching him like a hawk, because at any moment Leo could decide to wake up and rip the tubes out.  Luckily, he didn't and by midnight he finally woke up enough so the tube could be removed.  The next day was rough.  The surgery left his neck very stiff and any neck movement was met with severe pain.  This ultimately compounds the issue because a lack of neck movement would lead to increased stiffness and a negative feedback cycle.  Forced movement and pain medication was the only way to break this cycle. The next morning the plan was to be sent to the oncology floor as long as he was progressing.  Since Leo was still throwing up he had to stay longer in the PICU.  Later that night Leo stabilized enough to be transferred.



Once on the floor Leo was still vomiting so we had to change around his medication some. After that he turned the corner and started eating! Physical and occupational therapy ( PT and OT) started working with him to get his neck muscles loosened and to start walking. Because the tumor was in his cerebellum ( where your balance is controlled) we expected Leo's balance to be poor until that healed.  Slowly, but surely he improved over the coming days and was finally discharged on April 19th at around 8pm, only 4 days after surgery... what a champ!


As we write this on April 20th, the most likely diagnosis is classic medulloblastoma.  Chemotherapy and radiation will likely be needed.  Chemotherapy must be done to keep the cancer at bay and bridge the gap till he turns 3 y/o, the youngest that radiation can be given. Once he is 3 y/o,  6 weeks of radiation will be done at St. Jude's in Memphis.  After this chemotherapy will be needed again to finish off his treatment. ( update- plan has changed see journal entry on 4/22/22)

Newest Update

3 month scans clear! (March 18, 2024)

Journal entry by Caroline Wai —

Hello!!! So so sorry for the late update! I honestly should have written the update while at the airport. Once we got home it’s been nonstop! Mid March Leo and I went to TN for his three month scans and tests. Everything looks good on the scans! His brain is healing from the last surgery in September and as of right now they don’t see any evidence of radiation side effects. Therefore next scans are  in 3 months, June. Labs looked good and his spinal fluid was also clear of cancer cells! I’m hoping that this all can continue to hold true for future scans and tests.  The next couple scans 
(6 mo and 9 mo) are very scary for me given when he relapsed last go around but that’s anxiety that I’m trying to ignore and distract myself from until next scan time. That’s ok right?🫠🤣
His hearing test showed that his hearing is still holding stable. Decreased hearing with left side  greater then right, but not bad enough for hearing aids. So again I hope that remains stable as well. Usually when one on one with Leo he can hear pretty well but once you add some background noise it gets a little more difficult for him to hear us clearly. His preschool class is small thankfully  but once he goes to kindergarten we may have to figure something out. 
As for our non medical lives the Wai family is  busy! For spring break we made our way up to North Carolina! We went hiking, tubing and got to meet the new baby bestie of the crew. We have had fun beach days, theme park trips and pre-Easter fun. 
Leo is doing great at school and finally getting into the groove of things. We did have a hiccup after scans because he was getting headaches from his spinal tap and ended up throwing up in class. He was very embarrassed by that so we took a couple days to make sure his pressures leveled out and that he was feeling better before going back. Leo is also finally in swim lessons and loving it. Today he leveled up to a level 3 after only being there for 1.5 months! Goal is to having him swimming laps around us and diving for toys by June🤞🏽
Camila is also doing great! She loves school and was awarded student of the month for March! She is in gymnastics and let’s just say that she is doing her best 😅. She has a small showcase coming up and I can’t wait to record it and haunt her with the video when she is older lol.  It’s definitely not her favorite but we will finish out the season! 
As for Justin and I, we just celebrated our anniversary! Married for 11 years but we have been together for 17! I’m not sure how he still puts up with me❤️
As busy as I am driving the kids all over town, volunteering at their schools, chaperoning and keeping the house afloat, I’m soo thankful for our health and sense of normalcy!! 

Happy Easter!!!🐰🐣 
Read More of the journal titled "3 month scans clear! (March 18, 2024)"
  • Mock mri to start getting ready to do MRIs without sedation  
    Mock mri to start getting ready to do MRIs without sedation
  • Getting ready to go to sleep for our MRI
    Getting ready to go to sleep for our MRI
  • Chillin and making up those calories from missing breakfast and lunch! 
    Chillin and making up those calories from missing breakfast and ...
  • Bronco of the month!!! 
    Bronco of the month!!!
  • Ringing the level up bell! 
    Ringing the level up bell!
Patients and caregivers love hearing from you; add a comment to show your support.
Help Leonardo Stay Connected to Family and Friends

A $25 donation to CaringBridge powers a site like Leonardo's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?

Leave a comment of support for Leonardo

Did you know? A quick comment, no matter the situation (positive or negative), can boost morale by 28.2%.

Comments Hide comments

Load more comments
Read More Journal Entries

Show Your Support

See the Ways to Help page to get even more involved.

Personal Fundraiser
Support Links
Helpful Requests
Go to Ways to Help
SVG_Icons_Back_To_Top
Top