Blast Off Blaise

UPDATE

Well, we had a good run. When chemo patients get very neutropenic due to low white blood cell counts, even the smallest illness can cause a neutropenic fever due to being severely immunocompromised. A normal ANC is between 1,500 and 7,000 and Blaise’s was at 200. Because of his low blood counts, they have held off on his daily chemo this week to give his body a chance to recover. If a neutropenic patient gets a fever greater than 100.4° it requires an E.R. visit and a 2-3 night stay in the hospital as they treat for possible infections.

In his 4 years of cancer treatment, Blaise has never experienced it…until now. Doctors and nurses exclaim that “it’s a miracle” he hasn’t had to be admitted for a neutropenic fever yet. (That’s because our God is the God of miracles). Blaise got a runny nose and cough and began to run a fever that hovered between 99-100° on Thursday and Friday until about 10 o’clock last night when it creeped up to 101.6°. His doctor instructed us that if it went over 101° that we needed to bring him to the E.R. at OU Children’s Hospital in OKC, so that’s where we are now.

We left home around 11:00pm and arrived at the E.R. about 12:30am. They got us in immediately and accessed his port to rule out an infection there. They drew blood for labs and immediately put him on an all-encompassing I.V. antibiotic. They gave him an all-over physical assessment looking for bruising and rashes due to low blood counts and did a nasal swab. At 4:45am they had us admitted and got us to a room. Once again, they did an all over assessment of his lungs, ears, nose, throat, and skin. His nasal swab tested positive for rhinovirus. — he has a common cold. We finally got to sleep at about 5:45 this morning. 🥱

As of right now, they anticipate him being here until Monday morning as they run tests to rule out any infections that could be hiding, to continue the antibiotics, and possibly give him some blood.

PRAYER REQUESTS
• Blaise’s blood counts recover
• the virus runs its course quickly and without issue
• no more runny nose and sore throat
• doctors release us as soon as possible

❤️🚀🎗️

We spent the day in Stillwater helping Oklahoma State University Cowboys vs Cancer and the Eddie Sutton Foundation raise money to help families fighting cancer! It was the biggest day of fundraising at the annual Cowboy Classic Golf Tournament with $225,000 raised!!! 🤠🧡🎗️

“We do a lot of things, but this is THE BEST thing we do as Oklahoma State University athletics.” — Chad Weiberg, Athletic Director

📹: Video of a shootout between Blaise and Pistol Pete in the comments! 👇🏼👇🏼

👨🏻‍⚕️🧑🏼‍⚕️ HAPPY NURSES DAY 👩🏾‍⚕️🩺

We want to give a huge shout out to the countless nurses, techs, and physical therapists that have helped us along the way during our 4-year fight against brain cancer. There are WAAAAAYYYYYY too many to try to name. We are forever grateful for all of the help, comfort, laughs, answers, insight, snacks, meds, encouragement, hope, … EVERYTHING you all have given us!

There’s a special place in Heaven for medical staff who go above and beyond….especially for pediatric patients. ❤️🚀🎗️

We LOVE you all!!!

Blaise was a guest of honor at the Oklahoma State Cowgirl Softball game today! He got the VIP tour, an autographed softball, a pitching lesson, and threw out the first pitch! Thank you to Oklahoma State University Cowboys vs Cancer and The Eddie Sutton Foundation for inviting us. We had a BLAST!!! 🧡🥎

🎥: videos in comments👇🏼
📸: family photo creds to Larry Reece

UPDATE

Doctor McNall has decided to hold off on the chemo for a week or two because Blaise’s platelets and blood counts haven’t recovered enough yet. We will start the cocktail of antiangiogenics today though.

PRAYER REQUEST

• Blaise’s bone marrow recovers from the temozolomide and begins to crank out platelets, red blood cells, and white blood cells.

🩸💪🏼 🦴

UPDATE

We are in OKC to start Blaise’s new protocol. Today, he will start taking a mix of low-dose chemos and antiangiogenic medicines. This protocol, referred to as MEMMAT, is generally well-tolerated by kids. By alternating chemos every 21 days it helps keep the cancer from becoming chemo-resistant. The antiangiogenic medicines prevent Blaise’s body from creating new blood vessels. This keeps tumors from being able to grow larger than a couple millimeters. He will take 5 medicines each day at home and will come to OKC for an infusion of the 6th every three weeks.

PRAYER REQUESTS

• Blaise is cancer-free FOR GOOD
• No side effects or lingering conditions from all of these treatments
• He grows and develops the way a teenage boy should at 13 years old
• Insurance approves ALL prescriptions
• Peace and hope continue to fill our hearts and minds

❤️🚀🎗️

These guys do awesome stuff!

Blaise was asked to represent Make-A-Wish Oklahoma today at the The University of Tulsa basketball game. The Chi Omega Epsilon Gamma at The University of Tulsa sorority does fundraising for Make-A-Wish every year to help grant wishes. Their philanthropy helped send Blaise on his wish trip to Walt Disney World.

As the guest of honor, Blaise got to join the girls on the court as they announced their upcoming fundraising efforts for Make-A-Wish Oklahoma. (video in comments) 👇🏼👇🏼👇🏼

We would love it if you would help out the girls of Chi Omega by donating what you can to their fundraiser. $1? $5?? $20??? $100???? Anything!

Their goal is $7500.

Click the link below or scan the QR code to donate! They’re great supporters of Blast Off Blaise, so let’s be great supporters of them!!! ❤️🚀🎗️

Please LIKE and SHARE this post to get it out there to all of the Blast Off Blaise fans!

⬇️ Click here to be a generous GIVER!! ⬇️

https://secure2.wish.org/site/TR?pg=team&fr_id=7463&team_id=58288&s_src=nuclavismobile&s_subsrc=Nucl_Web_TmsQRC

UPDATE

People have been asking about Blaise’s MRI results, and until today we hadn’t met with doctor’s about it or heard any in-depth results except “the scans look good!”

Today we met with Dr. McNall. She said the scans “look wonderful.” The two lesions in his brain that they were concerned about are gone from the MRI scan. There is currently NO EVIDENCE OF ACTIVE DISEASE. 🙌🏼

Some doctors believe we *could* move forward without any kind of treatment, but with the aggressiveness of group 3 medulloblastoma we feel like we should be more proactive to avoid having to be reactive. Blaise is scheduled to begin a modified MEMMAT protocol in a week or two.

MEMMAT is an antiangiogenic and metronomic chemotherapy protocol (which means it blocks his body from growing new blood vessles that would feed tumors) and is used to treat recurrent or progressive pediatric brain tumors like medulloblastoma. It combines low-dose daily oral drugs (thalidomide, celecoxib, fenofibrate, etoposide, cyclophosphamide) along with IV bevacizumab to target tumor blood vessels. This protocol has been shown to be well-tolerated by patients for years. He would take the medicine daily alternating between the two types of chemo every 21 days and receive the IV bevacizumab every 21 days as well. He would be on it for a maximum of about 2 years because medulloblastoma recurs quickly so 2 years clear would pretty much ensure that it is gone.

As of right now, those are our next steps. We appreciate all of the prayers and support everyone offers. It is all very needed and very appreciated. We continue to fight while putting our trust fully in God and continuing to live our life. We couldn’t do it all without Him and without y’all. ❤️🚀🎗️

PRAYER REQUESTS:
• Insurance approves all medications requested
• Blaise’s hemoglobin and platelets continue to improve
• Cancer is gone for GOOD
• MEMMAT protocol is well-tolerated with no side effects or reductions in dosages

UPDATE

We’re headed to OKC for an early morning MRI. The scan should take about 3 hours or so, and Blaise will be sedated thanks to some pre-scan Ativan.

He had some blood work done yesterday. His hemoglobin and platelets are still low but holding steady. They also tested his bone marrow to see how it’s holding up (because these chemos and other drugs wear on it over time) and those results were normal. PRAISE GOD!!! 👏🏼🙌🏼🗣️

Please pray for us as we travel and wait to hear scan results. We believe that Blaise is cancer-free and that he’ll live a long and prosperous life on the Earth! We are confident that “HE WHO BEGAN A GOOD WORK IN BLAISE WILL CONTINUE TO PERFECT AND COMPLETE IT!” (Philippians 1:6)

Prayer Requests:
• safe travels to & from OKC
• on-time appointments and procedures
• peace of mind from intrusive scanxiety
• clear scans and no evidence of disease

❤️🚀🎗️

UPDATE

After a long 8 hours at OU Children’s Hospital, Blaise has received one unit of blood and one unit of platelets. He’s already feeling much better. He slept a lot of the time today. It’s great to see him walking around and talking without feeling exhausted or getting out of breath.

THANK YOU for all of the prayers and encouragement! We couldn’t walk this journey without you all. God answered YOUR prayers. The blood and platelets were ordered quickly, and Blaise did so good with the infusions that Nurse Val was able to speed up the rate to get us home faster than expected. ❤️🚀🎗️

As always, we’d love it if you would take the opportunity to donate blood through OBI (Our Blood Institute). We are eternally grateful for all the A positive donors out there that have helped Blaise with blood and platelets during chemo. 🩸🅰️➕🩸