MAR 26

Hello Friends,

I have had an update swimming around in my head for days now. It has been a rough couple of weeks, thankfully not too badly physically, but oh so much, emotionally. This past Thursday evening, her hair did start coming out in clumps. As of today, almost all of it is gone. As you can imagine, it is so hard for a little child to have to go through so much. Her appearance has changed, gone back to somewhat normal and then have it all taken from you again, but this time much worse.

Out of everything she has gone through since October, the initial Induction phase was the hardest (so far). Twenty nine days of steroids, changing the personality, looks, and demeanor of my sweet 7 year old girl. The beautiful, sweet-spunky little girl was about to go down a road none of us was ready for. She has handled things so well all things considered. I think I could say pretty confidently that I would not be doing as well as she has done/is doing if I had to go through the same experience. At the same time, if I could take this off of her and go through it myself….I would – in a heartbeat.

I’m her mom. I have to hold it together for her, though at times, I feel like she has held me together; and ultimately the Goodness of our Heavenly Father has seen us through everything.

All that being said, she had to go back on the steroids, though not as long, they did make her swell slightly but nothing compared to the last time. But the steroid withdrawal seems so much worse this time. Joint pain so bad it mimics the symptoms of a blood clot, personality changes made her a sad, joyless, shell of my once bubbly sweet heart. There would be days I would be amazed at how energetic she was after a chemo treatment. We even joke about Lydia having the “zoomies” where she just can’t seem to be still. (Zoomies are what dogs and other animals get when the randomly zoom around the house)

As of last night, Lydia laughed for the first time in 2 weeks. Thank God!- it seems like the steroids are slowly leaving her system. I don’t mean for this update to be so sad and down. We are so incredibly thankful. This phase just seemed particularly hard physically and emotionally.

Thank you for your continued prayers. As we head into Delayed Intensification 2, we would appreciate your prayers for…

  • the medications continue to work and she would have no hard side effects
  • safety as we will be traveling to and from the hospital more often during this phase
  • health for our family to minimize illnesses being spread at home
  • mental, physical, spiritual strength for us all

OH! Good news! We got an End of Treatment Date!!! Lord Willing Lydia will be “ringing the bell” on December 21st 2025! That will be a wonderful day for sure!!!!

Praise God for his Goodness & Mercy,
Sarah Jacquet