Bo’s Story

Site created on March 27, 2018

March 23rd, 2018

Obviously, as you all know by now, Bo has been diagnosed with a rare Bone Cancer called Ewing Sarcoma. Approximately 300 cases in the United States per year, so...Burgess/Lizar Family competing for Rare Disease Day...geez...unbelievable really. 

Last October, Bo started complaining of "leg pain" but from October - December his only complaints were at night and once we gave him Ibuprofen, he would resume normal activity and life would go on. Literally, he maybe complained 4 times in those first few months. Then in January and February, he maybe complained of "leg pain" at night again 3-4 times but each episode was isolated and intermittent. 

Then, on Thursday, March 8th, Bo came in from school recess with tears and had his first "daytime" complaint. Chad and I skipped the pediatrician's office and went straight to the Buccaneers Team Doctor for examination. Friday, March 9th, Bo received a MRI with no contrast. We then received a call that the MRI was abnormal and we needed more testing on Monday. So on Monday, March 12th, we proceeded with a CT Scan of his left hip, blood draw and a MRI with contrast. Tuesday, March 13th, we met with Dr. Benitie, a surgical oncologist; he confirmed we needed the Bone Biopsy for full diagnosis. Friday, March 16th, Bo did great as the Interventional Radiologist took out 3 small samples, 2 of which were hard bone and 1 dime size mass of bone marrow. 

Today, we met with a pretty amazing guy, Dr. Damon Reed, and he explained to us our fight ahead. (He googles well, so if you are curious to see his credentials....I recommend it. His experience will bring you peace of mind)

This is what we know right now. Bo indeed has Ewing Sarcoma. The only stages of Ewing Sarcoma are Stage 3 and Stage 4. Stage 3 meaning the cancer is localized and survival/success rates are in our favor, ranging from 70-90%. Stage 4 means the cancer has metastasized, and survival rates are much less ranging from 20-50%. 

So, this coming Monday, we have 2 different appointments. First, is a Full Body CT...we need this to determine whether his cancer is local or metastatic. Second, his heart will be very carefully monitored during this entire process so Monday he will have an Echo an EKG for baseline reports. 

Tuesday, we then have another 2 appointments. A Bone Scan and his PORT placement. His Bone PET scan will also tell us how his body reacts to sugar, another way to verify Stage 3 vs. Stage 4. The port is going to be placed so he can receive all medications from this one spot. 

29 Weeks of Treatment will go as follows:

Chemo for 3 months, Localized Treatment for 1 month (either surgery or radiation), followed by Chemotherapy for another 4-5 months. This could start as early as next Friday. 

All Chemotherapy sessions will be Inpatient @ John Hopkins All Children's Hospital in St. Pete, meaning he will stay in the hospital for 3 -5 days depending on the blend. 3 week cycles, meaning 1 week on, 1 week off, 1 week on. The 2 blends are VDC and IE. On his off weeks, he will be getting labs done, and we will be doing our "Outpatient Care" in the John Hopkins, Specialty Clinic in the Tampa Office. 

So, how is Bo handling this? Honestly, I know he does not fully grasp what is to come. He thinks it is "cool" that it is so rare and he likes to think he is a little more famous now with family and friends. The first thing he wanted to do is go tell all the neighborhood kids and their parents. His good spirits are making this a little easier to digest for Chad and I; however, we are realistic on how hard the next year is going to be on all of us.

What can you all do? 

First, please pray faithfully and diligently for Stage 3 meaning it is only localized. 

Second, food/grocery/snack gift cards would be a huge blessing as I am not sure how I am going to feed everyone at different locations especially once Chad starts traveling. I know we will figure it out eventually though. 

Third, please realize that depending on which kid is around or our emotional exhaustion; we may not answer texts or phone calls or even respond at all. I am trying very hard to not get too emotional in front of Bo and Willie so depending on the day and time; to be blunt; we may just need peace. 

Fourth, if you come visit, we will have to be very strict on sniffles, colds, flu, coughs, etc...The doctor was very clear with us today that the biggest danger to Bo during the next year will be exposure to illness since his immune system will be down. Go get your flu shots now, if you have not already done so, and do not expect me to let you or your kid in our house if I sense any type of sickness. Fever is the #1 complication and doctor said it can delay and complicate chemo treatments so please take this note very seriously. 

I will send these emails out periodically to keep you all up to date. Thanks again for all the prayers and support. We are truly blessed to have amazing people around us here in Tampa and those sending lots of love from home. 

Newest Update

March 6, 2019 - Another Scan

Journal entry by Amber Wade —

To recap....Bo finished chemo on Nov. 21st. He was officially cancer free on Dec. 4th and for the next 5 years we will have scans frequently to make sure the Ewings does not come back.

Great news...Bo received his 3 month scan on Monday. Today we found out he is still cancer free!!! We also get to schedule his port removal surgery within a couple of weeks. Praise the Lord for a great day and healthy children, may his body continue to get stronger.  

Over the new year, we had to switch Willie and Bo back to our local school just to make our life easier logistically. Since February, Bo has been in co-enrollment school meaning he goes every morning with Willie at 7:30. Then Mema, Gpa or I pick him up at 10am depending on my work schedule. On Tuesdays and Thursdays he then has hospital home bound school from 12-1 just to focus on Math. 

Life is busy obviously but everyone is good. Gpa is slowly healing from his double knee surgery and Mema has been enjoying all of her visitors. Chad is getting to know and enjoying his new co-workers at work; they were very excited to see the alligator out sunning the other day when Bo and I were visiting. Willie is just finishing basketball and we are so proud of what a great team mate he is and how unselfish he has learned to be this season. I really have had a blast coaching the lil' boogers. Bo is going to play both basketball and baseball this spring and Jet is still attached to her Gpa and loves to sing and dance. We let Bo and Willie watch their first scary movie last week...that has been interesting. Put it this way, I need to be more discerning if I don't want a child in my bed every night:) 

Bo was also featured at a Tampa Bay Lightning Game as an Inspired Kid. Our whole family was on the jumbo screen. 

Tonight we are on our first family vacation since...I think since March 2017. We are at LEGOLAND and the kids are in heaven.

Blessings to all of you reading and I hope 2019 is great for you so far. 

Love, Amber 
Read More of the journal titled "March 6, 2019 - Another Scan"
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