Teddy Tough

WE’RE GOING HOME!!!

Theo’s oncology team surprised us this morning with the good news that his blood cultures continued to be negative and he was safe to finish his antibiotics at home.

Praising God for letting us take our sweet boy home. ❤️🥹🙏🏻



- Abbey

After a 7-hour delay in the radiology department’s scheduling (resulting in Theo not eating for 13 hours), his line was finally removed yesterday!!

It was a long day, but our little guy continued to show his sweetness and toughness, often being better behaved about the wait than his mama. 🙃
Today he had a wonderful time giggling and smiling and showing off for all of the various medical professionals we saw. We really think he is enjoying all the attention and new friends. 🤣

His team switched him to a different antibiotic, and the blood culture from yesterday was negative today, which is what we hoped for and expected! His oncology team thinks he is doing great and supports getting an oral antibiotic ASAP and letting us finish his treatment at home. There are some technical issues with the infectious disease team’s testing that have to be resolved before we can leave, and his blood cultures need to remain negative for a few days.

Thank you for your love and prayers. This is not a place where anyone wants to be, but the Lord continues to sustain us and provide healing and good results for Theo. We hope to have more clarity tomorrow on a possible discharge date. 🙏🏻

💛

- Abbey

Thankful for a much more normal day today!! 🙌🏼

We spoke with the infectious diseases doctor today and have a better understanding of what we are dealing with. They still need to see certain results in their testing to make sure the antibiotics are hitting both of the versions of the bacteria that he has in his system and to start the clock on his treatment duration. His blood counts are slowly improving other than his neutrophils.

They will draw more bloodwork early in the morning to test his levels and bacterial growth. Please join us in praying for his blood counts to dramatically increase past expectations and for there to be no bacterial growth.

Our prayers are being answered as we got our smiley guy back today, which is so good for our hearts and minds. Praying for big progress over the next 48 hours.

💛🧸🎗️

- Abbey

Our little guy gave us quite the scare. Theo had a 100.58 fever and was pretty lethargic on Thursday, having also had a really rough night prior. His team advised us to bring him in to the CHOA clinic. While there, he suddenly took a turn and had an episode of SVT and a fever of 104.5. What started as a few nurses in his clinic room quickly turned into 10-15 nurses, doctors, and specialists surrounding us in the ER. It was the scariest moment of my entire life.

We were in the CICU overnight and have now been moved to the CACU for at least 24-48 hours. Theo has a bacterial blood infection and will need IV antibiotics for probably about a week, depending on how quickly the infection responses to the antibiotics. This type of infection isn’t uncommon for kids getting IV chemo, and one nurse commented that it was “incredible” that this was his first admission. We are all the more thankful that last week was his last infusion.

His vitals look good. His heart has self-regulated to a more normal range most of the time. The antibiotic is hurting his tummy pretty badly so he’s receiving lots of medications to help with that.

We are incredibly thankful for the amazing doctors, specialists, nurses, etc. who have taken such good care of us. There are a few who I will hold close to my heart for being there for us in our darkest hour. Having such great care for our little guy is comforting in such scary moments.

Theo continues to be extremely resilient and tough. We are heartbroken that he is in so much pain, but remain confident in his eventual recovery and testimony.

Specific prayer requests:
- No future bacterial growth in his blood cultures.
- Guiding the doctors to find the right antibiotic for Theo’s specific infection that quickly treats it and has no side effects on his body.
- For his blood counts to recover quickly and his body to have the strength to fight off the infection.
- A smooth removal of his central line (🙌🏼) Monday morning.
- No more episodes of SVT or heart complications.
- Supernatural strength and peace that surpasses all understanding for two very tired parents.

This is not where we wanted to be. We were so hopeful we had managed to avoid this experience, but we are so thankful to have access to such great care at CHOA. If he has to be treated, we wouldn’t want to be anywhere else. We will update as we learn more about his condition, treatment, and recovery.

Thank you for your prayers, love, and kind gestures and messages.


- Abbey

Heading home from chemo!! ✅

Praising the Lord for our best report yet 💛

No new tumors!
Significant visible improvement in the large tumor in his right eye!
Good to get his line removed as soon as his oncology team can!

Thank you for your prayers, love, and support. Please continue to pray for his body to handle the chemo well. It was a pretty tough day on his little body, but we are hopeful that the worst is behind us. Tomorrow should be his very last day of systemic chemo.

There are lots of moving parts for getting his line removed. We need clean results from his MRI on June 9th, and quick coordination with scheduling to get it removed, which we would love to be on June 15th when he has his next eye exam under anesthesia, but that is not the typical way that the hospital works. We know the timing is in God’s hands and are very eager to have this part of his battle behind him.

💛🧸🎗️

We returned to CHOA today for Theo’s fifth round of chemo and laser treatment, and the overall report was very encouraging.

His exam showed continued progress, especially in his right eye where the primary tumor is getting smaller. Because of how well it’s responding, his doctor did not need to use any injected chemo this time. The large tumor in his right eye was treated with laser.

In his left eye, the doctor identified one new small tumor, which was also treated with laser and is not expected to cause ongoing concern. Aside from the main tumor in his right eye, none of his previously treated tumors required additional treatment today. In fact, the doctor noted that those areas are scarring well, which significantly lowers the likelihood of recurrence.

In short, this was one of the most positive updates we’ve received so far. We’re grateful for Theo’s progress and are hopeful about the road ahead.