JUN 06

Hello friends,

Thank you for all your prayers! We were able to avoid a hospital stay and were able to treat her mouth sores at home. So thankful for that! I, unfortunately, got sick with a sinus congestion, cough, & sore throat bug. Thankfully I’m getting over it and so far Lydia hasn’t caught it.

She did have a low-grade fever yesterday morning and within a few hours it went away! I don’t know what that was but I’m thankful she isn’t fevered anymore.

Lord willing, she will have her last dose of the high dose chemo (for this phase) on the 10th. We are still scheduled to begin Long Term Maintenance on the 26th! Praying she will stay on track!

When we begin Long Term Maintenance we are planning on finally resuming life as normally as we can. Her immune system has been compromised and she’s been in a bubble these past 6 months. Please pray she stays healthy while she gets back into the swing of things.

Thank you for your prayers and cares for our sweet girl!

PS I thought it would be fun to get a picture of little Kiwi with a kiwi (haha!)

MAY 27

Hello friends,

Thank you for all your prayers. Lydia is almost to the much anticipated Long Term Maintenance! These past high dose chemotherapies have been intense. She unfortunately did get mucositis again, but thankfully we were able to get the meds to treat her outpatient this time. Please pray they continue to heal while we wrap up this phase.

She will have more chemo this week, possibly. The doctors will assess her and adjust her meds accordingly. If she is able to continue on schedule, she will be on track to resume life cautiously as before.

We are so thankful to God for His Goodness and Mercy during all of this. We will still have a long year and a half to go, but he has provided all our needs and Lydia has been doing very well by his grace.

Lydia is very much a fighter. She handles most things very well. She has been so brave, tough, and just amazing.

She still struggles with getting accessed (the IV needle being placed into her port) but she has gotten a lot better with coping with it.

Her hair is starting to grow back!! We have nicknamed her “kiwi” because it’s more fuzzy than peach fuzz, but still very short. There is a chance she could lose her hair again during Maintenance, but her doctors think since she held onto her hair for so long the first time they think it will just continue to grow from here.

I’m not sure what returning to “normal activities” will look like. I’m an overprotective mama bear to begin with so pray for comfort and protection as we get back into the swing of things.

We will still be cautious and she still has things she can and can’t do until her port is out, but this is a huge step for us.

I’m so thankful for everyone who has prayed for Lydia and our family during these past 6 months. One post I’ll calculate how many pokes, transfusions, hospital visits and stays, miles on my van, hours spent at the hospital etc. we have been through.

I’ll post a more accurate description of what Long Term Maintenance looks like when I know more about it.

Please keep praying. She is still on track to “ring the bell” on 12.21.2025!! Looking forward to that day!

Life is precious. Each day, moment, & breath is a gift from God. Love one another, be thankful- there’s always something to be thankful for. We are trusting God to see us through this trial and he has and he will.

There are times I feel so down, bitter, angry, upset, and I remember that God is bigger and he knows our needs. I cannot imagine going through this without trusting in Him. We are so blessed.

Now, I’m getting very emotional, I’ll end the post here. Thank you all very much for your kindness, prayers, and love. Please keep praying!

-Sarah Jacquet

MAY 04

It’s been a little while since an official update. Sorry about that. Between hospital visits and follow ups I’ve had few updates typed out on my phone but nothing put together for the website. I apologize. I’ll try to summarize a short timeline.

April 18th-23rd : hospital stay for a Neutropenic Fever + Rhinovirus + unknown virus. We had an intense few days of waiting for lab results. When Doctors used the words Possible Sepsis , my mind started thinking some very negative thoughts. Thank God all her cultures came back clear and she was able to recover with a few rounds of antibiotics. It’s scary what a common cold can do to a person that is immunocompromised.

April 24th-30th
Lydia spent the next week recovering at home and slowly getting her strength back. We were so thankful she was able to get out of the hospital in time to celebrate her big brother’s 12th Birthday! And speaking of birthdays…RJ and Lydia’s birthday are only 6 days apart. So we just were able to celebrate her 8th birthday. God is so good. She really wanted to go to the Aquarium for her birthday, but her counts are still too low to do that yet, so that is on hold. But we still had a fun day, we have a small indoor inflatable “jumpy castle” we use for VBS and other things and we were able to inflate that and let her be queen of the castle for a day. She had a special breakfast that Richard did an amazing job making for her. And she picked out pizza, veggies, and salad for birthday dinner. Then she finished the day off with brownies and ice cream. It was a very low key day, but we can definitely go to the Aquarium, just at a later time.

April 30th- May 3rd
Lydia started Interim Maintenance 2 (IM2) on April 30th. It’s very similar to Interim Maintenance 1 just more intense. Remember those mouth sore she was hospitalized from in January? Well she’s getting that same Chemo that caused them last time again, but a high dosage. So we very much appreciate your prayers that those would stay away. This phase will last about 41 days and then Lord willing she will be in long term maintenance.

These 6 months have seemed so long and hard but we’ve hopefully gotten through the worst part. This fight has been intense and we don’t know what the future holds but we know the one who holds our hands through it all.

I’m very thankful for all the prayers and cares for Lydia, and all of us. We have been very blessed things have gone relatively smoothly so far. We’ve learned to be thankful even when things look bad.

Here are some pictures from the past month.

Richard’s Beautiful Birthday Butterfly Breakfast

 

In the hospital again…making the best of it.

 

Thankful for our little pink wagon. So very helpful for when she feels weak and I’ve got too much to carry.

 

Lydia absolutely loves Music Therapy

 

Queen of the castle

 

Happy 8th Birthday Sweet & Spunky Lydia!!

APR 19

I apologize for sending this out “retroactively”. Yesterday was busy, and ER trips have become fairly commonplace. Sarah was not in church last night because she had to take Lydia to the ER. She was very drained, and based on her pulse and blood pressure, the on-call doctor said to bring her in. She was admitted because of low counts in a lot of categories. She had a transfusion this morning, and was discharged with a prescription for antibiotics due to an ear infection.

They have only been home a few hours, and she may have to go right back because of a fever. Please pray the fever breaks.

God Bless,
The Jacquets

MAR 11

This is going to be a big one. I’ll try to start with the highlights and put the details for the medical nerds later.

Lydia is nearing the end of “delayed intensification.” She has her last chemo treatment of this stage tomorrow. This has by far been the hardest stage for everyone, especially Lydia. At her appointment tomorrow, she will have been to the hospital 8 of the past 11 days. In addition, she is on intense oral chemo at home. It is so potent that we have to wear gloves when preparing it and make sure not to let it touch anything or even breath in its dust. Thankfully, tomorrow is the last of the back-to-back hospital visits.

The next stage in her treatment (Interim maintenance) starts May 2nd with a lumbar puncture. This stage is a step down in intensity, and should last about a month. After that, assuming everything continues on the current trajectory, she will be in long term maintenance until the end of 2025.

She continues to respond well to the treatments. By all measures, her side effects and E.R. trips have been as minimal as can reasonably be expected. God is good. Thank you for hour continued prayers.

For those of you following the genetic stuff:

A preliminary consultation with the geneticist revealed a slight miscommunication. The Mayo clinic had given the doctors the idea that they had observed a TP53 gene mutation in Lydia’s blood work. This is not accurate.

What they had seen was a chromosomal abnormality that is commonly associated with a TP53 mutation. Testing needs to be done to see if she does have that mutation, but the doctors are cautiously optimistic that she doesn’t. Some of the reasons are that it does not typically cause leukemia, and it is most often associated with tumorous cancers.

Thank you again for all the prayers, support, assistance, love and kindness.

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

MAR 13

Hello Friends,

We are into week 2 of this phase. That first week really took it out of her. She has bounced back since then, thankfully. Thankful for the nausea meds! Her next appointment is Friday. Spring has sprung here in Florida. Which means pollen is exploding everywhere. Didn’t realize how sick allergies can make a cancer patient. She’s had a low grade fever and a cough/ congestion for a few days now.
Coughs can turn into other things quickly, especially since she has had lung issues in the past.

We did get to have some fun this past weekend. We weren’t able to participate in the annual church campout this year, so Richard made sure that we were able to have a fun weekend anyway. He and RJ went to the campout but not without setting up a “camp in” for the girls and me. We slept in a tent in the living room. We had s’mores. We sang some songs together and had fun playing camp out.

Thank you again for all the prayers. God is so good.

MAR 05

Hello friends,

Lydia has entered a phase called Delayed Intensification 1. It is pretty much what it sounds like. Several rounds of intense chemo and more steroids. Her counts are expected to drop so we are back in quarantine for a while. This phase will be 29 days as long as there are no set backs. Her hair has started to thin quite a bit. Say a prayer for this sweet girl in that regard as well. She’s handling things so well. God is so good. We are incredibly thankful for the support and prayer we have around this sweet girl and our family.

She just received a chemo called Cal-Peg and it’s famous for having a negative reaction on the 2nd dose specifically. She had that yesterday and by God’s grace she didn’t have a negative reaction. You could feel the nervousness in the room while they started the infusion and the first 15 minutes are crucial. There were nurses all around, life saving medicine ready to be administered if she needed them and thankfully she didn’t need them. After the one hour mark went by, the nurses left the room and check in every 15 minutes. Lydia started to drink some water and as it happens from time to time she swallowed the water and it went “down the wrong way” and she began to cough. In a matter of seconds her room was filled with nurses ready to take action. I told them she just choked a bit on water, but for a few seconds things were intense.

Again, we are so thankful to be apart of a dedicated team to provide excellent care for our daughter. We are thankful to God for doctors, nurses, child life specialists, and many more staff members. We’ve even befriended the security guard named Eddie. He greets us so cheerfully when we come in and we are just thankful with the friendliness of just about everyone we have come across.

Sorry for the lengthy update. I just don’t know what to say. I’m so grateful. Lydia has been handling things so well. Since things have been going so well, I’m almost on more of a high alert expecting it to go wrong at any minute. So I have to slow down and tell myself to appreciate the good days and take it one day at a time. 🧡

Praise God for His Goodness and Mercy,
– Sarah

Before chemo started
Abigail, Lydia, & Richard hugging after saying a prayer for her as she starts this new phase.

FEB 13

Lydia finished Interim Maintenance 1! Praise the Lord! She’s been doing so well during treatments. We’ve had a few minor set backs but everything is going well for the most part. We have a small break before the next treatment starts.

Delayed Intensification (DI) starts the end of this month. Lydia was approved by her care team to do a few activities during this reprieve. She got to attend church and a birthday party (the most fun she’s had in months ) the host of the party was so incredibly welcoming and thoughtful about her situation. She got to come party before the party started and participated fun activities before the rest of the party started. We are so blessed to be surrounded by people who care and pray for our sweet girl.

We are so thankful for how well she’s doing. We don’t know what the future holds, but we continue to trust the Lord. We are 4 months in and about 20 months to go!

We were also able to get some much needed home repairs done these past few weeks. So Lydia now has a safe space, her own room, where she can be if we need to quarantine from another sick family member, or just to go and have some peace and quiet on days she’s not feeling the greatest. Thank you to grandma and grandpa for letting us stay with you all while that work happened.

Thank you to those who have helped in many other ways especially in prayer. Thank you for all the letters, cards, gifts, and sweet notes. We are so blessed.

-Sarah
 

Lydia and her Mimi

 

Lydia having a blast at her friend’s birthday party

 

Lydia’s first night in her own room

 

Having a blast at grandma and grandpa’s