Still smiling in spite of leukemia
Nausea is a big problem we face. Salty snacks seem to help. Thanks, Mimi, for all the salty snacks 😋
Today was also a big step. Lydia has never had more than a few trims as far as haircuts go. I saw the need to go ahead and try to save what we could and make her hair more manageable during this hard time. It was hard and we can’t wait till it grows back long and healthy!
Today we are thankful for math. She wasn’t feeling very well this morning, but she did humor me and got some math papers done. Great job, Lydia. Listening to music helps while she blocks out big brother’s school lessons.
Lydia’s first in-clinic chemo treatment did go successfully. However, due to some stomach issues, she couldn’t have the anti-nausea medicine; so she feels pretty poorly right now. Hopefully once her tummy troubles are resolved, she will be feeling a bit better. She didn’t even say hi to this week’s “Larry.” Some days she’s spunky some days she’s not. Today, unfortunately, is the day she is not so spunky.
Her blood work keeps coming back with good news, so we are thankful for that.
Please keep praying and on the harder days pray harder. 🧡
Lydia was able to attend the annual Youth Night at The Bible Baptist Church Sunday night. As her immune system gets weaker with the chemo treatments, her exposure to others will end. This will likely be her last time attending church for a while. In the mean time, the family will watch on live stream and make other arrangements.
Lydia and Richard were watching an animated show (it feels wrong to call it a “cartoon”) about Jesus. Lydia started crying. Not silently, not whimpering, full on sobbing. We were obviously worried that something serious might be wrong. She was finally able to say, “The story is making me sad.” So mom hugged her and ended up passing her to dad so she could plate up dinner (graciously and deliciously provided by our church family). As he hugged her and she continued to sob, she kept saying, “I don’t want Jesus to die.” He reminded her that if Jesus hadn’t died, we couldn’t be saved. She said, “I know, but I should be on the cross.”
Praise God!
Short but awesome update:
The results of the bone marrow biopsy are in.
First, because many have asked, the genetic changes started roughly a month ago. We caught it VERY early.
Now the really good news. Her chromosomes are the best she could possibly have for fighting this particular cancer. This does not change the treatment schedule, but what was an 85-95% chance of survival is now an estimated 97%!!! Additionally, she has a significantly increased chance of a CURE as opposed to long term remission.
The road ahead is still long and hard, but the light at the end of the tunnel just got a lot brighter.
Thanks again for all your prayers.
God is good,
The Jacquets
Lydia’s final treatment before returning home is scheduled for tomorrow. It is another lumbar puncture, for which she will be sedated. She has a platelet transfusion tonight in preparation for that. Depending on how quickly she recovers, she will be coming home either tomorrow or Thursday.
We had not realized until yesterday that the lumbar punctures are going to be a regular occurrence. They have to make sure the leukemia cells don’t migrate into her spinal fluid. Please pray for peace and comfort for her as she hates being put to sleep… and everybody hates having needles poked in their back.
She is currently battling fairly severe constipation, which is one of the main side effects of two of her medications. It would be bad enough on its own, but this cascades into stomachache, back pain, and vomiting 😞 As weird as it sounds as a specific prayer request, please pray for “regularity.” This will be an ongoing battle.
On the upside, the preliminary indications from her blood work are good. “Blasts” are blood cells prematurely released into the bloodstream before they are fully formed. They are the strongest indication of Leukemia before a biopsy. The level of blasts in her blood have already gone down significantly, indicating that the medicine is working!
This whole ordeal is definitely taking a toll on Lydia, but she is still herself. She has warned all the nurses and techs that “Baby Raccoon” (her favorite stuffed animal) will give them rabies if she doesn’t like them… with a smile, of course!
Thank you again for your continued prayers,
The Jacquets
“Larry” is the name that Lydia chose for the IV setup that goes everywhere with her. It has several functions: administer IV fluids, blood transfusions, and chemotherapy. It measures and beeps and monitors. It also is where Lydia sometimes keeps “Baby Raccoon” – her favorite stuffed toy. Baby Raccoon rides along when Lydia is walking around the hospital – and she has visited all of the floors.
Another day down the road…
No chemo today, just the peripheral medications. The most notable of these is a steroid that she will be taking twice a day, for at least the next 6 months. After she took it today, she got super hyper.
Sarah was quite happy when I arrived to relieve her 😆 As soon as I got here, Lydia and I went on a walking tour of EVERYWHERE we are allowed to go in the hospital! It is good that she wants to be active.
The doctors said that her tests are looking good. IF she stays on this track, we will be able to go home on Wednesday. Please pray to that end.
After she is discharged, we are looking at about 6 months of weekly visits to the hospital for chemo. After that, it’s an additional 1.5 years of home treatment, with less frequent trips to the hospital for testing.
Lydia has brightened the day of most of her nurses at this point. She was telling one of the workers about what days we go to church, and how much she loves Sunday school.
With a few notable exceptions, we are the only parents you see on the floor. Children come and go every day to receive treatment and be monitored. Most of them are dropped off and picked up the next day. Obviously there are people whose situations leave them no choice. It is just very sad to see how little we, as an “enlightened society”, value what is important in life.