‘Reflections on 2024’ – 8M & 6D EOT

Saturday, January 11th - 6 pm

8 months & 6 days until The End of Treatment

Happy New Year dear family,

I hope you all had a joyful holiday season filled with special memories. We stayed busy with Christmas events, and yes, Juju caught her 4th RSV virus, but luckily, she recovered quickly with no complications.

Yesterday was clinic day for Julia, and it started a bit rough—she got carsick on the way there, and her port access was emotionally hard for her. I think her anxiety is building since our clinics are now just once a month, so she forgets about them until it’s time for another poke. But the good news is, Juju had her last ‘make-up’ lumbar puncture yesterday, since she missed some earlier in treatment. From now on, her LPs will be at the start of each new maintenance cycle, and she has three more cycles to go—yay!

She also had a prophylactic infusion and her blood work looks amazing! For the first time since diagnosis, her numbers are in the normal range, and her ANC is where it needs to be—suppressed but not too low. So grateful for today’s results. Thank you, Lord!

Since my last update, we’ve had a few more medical appointments:

- Left leg issue: What was initially diagnosed as cellulitis has now developed into a complex mass (1/4” x 0.5”) without fluid around it. She had a leg ultrasound on 12/13, and we’re closely monitoring it with another ultrasound planned in the next few weeks. Please pray this will resolve with no complications.

- Eye appointment: Her astigmatism has worsened, so she now has a higher prescription.

- Nutritionist/Dietitian appointment: Very informative! We’ve been referred to Occupational Therapist to help identify the cause of Juju’s issues with food texture and color.

Thank you all for keeping my little sunshine in your prayers. Your continued support in prayers for Julia means the world to us, and we’re so encouraged by your love and faith.

Finally, about "Reflection"—our pastor at Refuge shared a powerful message last Sunday that really resonated with me. He mentioned how he’s never been one for New Year’s resolutions, and I’ve always been the complete opposite—goal-driven, check-the-box type of person, loving to look back and celebrate my achievements. But last year, my first blog in January 2024, was about feeling ‘empty’ with no real plans for the year—just simple, little games with Juju on our clinic trips, like talking about visiting train stations or going to the movies.

As 2024 passed, I still didn’t feel like I had any concrete goals or resolutions. Honestly, I felt broken, like I was just living day to day. But back to what our pastor said—he likes to reflect on the past year and, if needed, look through phone photos to see God's faithfulness. So, I did just that. I went back to my 2024 blogs, and let me tell you, GOD IS GREAT! I had written 33 entries, and in them, I saw God's faithfulness, His strength in my weakness, His peace in my fear, many of your beautiful encouraging words. Despite the trials we’ve faced, especially with Juju’s battle, I realized that God has carried us through it all with grace, mercy, and love.

Thank you, dear family, for being a part of our journey and for loving Jesus with us. We all have unique, beautiful stories in Him, and He truly wastes nothing. He is the one who gives us beauty for ashes. I’m not sure if I’ll ever return to my type-A, need-to-plan self, but maybe now I’m just a “reflectionist” (is that a word?). Reflecting on 2024 has filled me with gratitude, hope for the future, and more faith in Jesus.

Check out this quick little flyover blog video my Geo helped me put together, along with a one-minute video on Julia’s past 30 days. It’s a beautiful snapshot of her journey this last holiday season.

If you are on Instagram would love to connect  with you @mylittlesunshinejulia

"To grant to those who mourn in Zion the following: To give them a turban instead of dust [on their heads, a sign of mourning], The oil of joy instead of mourning, The garment [expressive] of praise instead of a disheartened spirit. So they will be called the trees of righteousness [strong and magnificent, distinguished for integrity, justice, and right standing with God], The planting of the L ord , that He may be glorified."

Isaiah 61: 3 AMP

Our hope is in the Lord!

Pray Juju adjusts to her new eye prescription, a year ago it was decreased as she was not wanting to wear her glasses, obviously it didn't help. Also appreciate your prayers that the cyst/mass in her leg will be resolve with no complications, thank you.

These are pictures when Juju was 3 months old - memory that popped on my FB <3 She's been a joy and a cutie patootie since day 1