Lydia Updates

Hello friends,

Here is a long over due update! Thank you for your continued prayers and support.

As we sail through maintenance, we’ve faced some minor hiccups and bouts of sicknesses, but thankfully nothing major. I don’t know how much of the classic “middle child” drama is true, but we have a saying in our house, “if somethings going to happen, it’s going to happen to Lydia.” Poor thing.

She managed to step on a rusty nail which landed us in the ER on a Thursday night. That required a tetanus shot + antibiotics to be safe. Then she ended up with an Upper Respiratory Infection and was put on antibiotics again. Shortly after that, she tested positive for RSV and wasn’t able to get her schedule Lumbar Puncture + chemo due to her cough and her team not wanting to put her under because of that. She also has asthma so any cough she gets really affects her. It seems like the cough is finally getting better. Thank God.

Aside from all that, she has had a good time getting back into the swing of things. School has started back up, she’s more active in church activities again, and we are able to carefully do more things outside the house. She is definitely loving that!

I can’t believe it’s October. The beginning of September 2023 started with a suspicion of illness with Lydia. I thought her symptoms resembled Mono. But deep down I couldn’t shake this feeling something was very wrong. I will forever be grateful to her doctor who listened to a mother’s concern, took me seriously, and ordered blood work straightway. I’m also forever grateful to the 2 people who urged us to get her checked out sooner rather than later and you know who you all are. This could be a very different story had we waited. October 16th is the 1 year anniversary of her diagnosis day. That is also the day we go in for blood work & the following day for her rescheduled lumbar puncture.

This is definitely emotional for me. You know that feeling you felt when life kind of normalized after COVID and you realized that it basically took 2 years of your life from you? Well, that’s how I feel about cancer. Lydia was 7, very much still a baby full of innocence, and cancer forced her to experience things no child should go through. I definitely feel like it robbed us of her life. Life was forever changed- and so was she. The emotional journey we would go on, the changes in her physical appearance, the changes to daily life. It was all overwhelming. And yet God saw us through this immensely difficult journey. Here we are, almost one year later and God has watched over Lydia. He’s given her healing so far and we give Him the praise and glory for that. We are so thankful for her team of Doctors and Nurses who have cared for her this past year. We’ve felt the love and care from this new group of people who definitely feel like extended family now. I know not every hospital experience has been great, but overall we believe we are doing what’s best for her and are extremely happy with the care she’s received so far.

Lydia is still in remission. Praise God! Please keep praying she stays there.

🙏 Honestly I don’t know if I will ever feel safe again…I think that the fear of her cancer coming back will always be there, but I think as time goes on, it might not be as prominent in my mind as it is now. (And all the medication & chemicals that has gone thorough her little body- who knows the long term effects from that ?!) I will keep trusting my Lord for peace that only he can give during times of uncertainty.

Sorry for the long update, but sorry it’s been a while since I’ve posted one.
In summary…

– Lydia continues with daily chemo & other medications at home

– She continues with IV chemo every 3 months

– She continues with lumbar punctures every 3 months (reminder that is checking her spinal fluid for cancer cells & injecting chemo directly into her spinal fluid as a precaution, if the cancer penetrates that barrier, it is very serious and the prognosis is much worse.)

– Her upcoming genetic testing in November (prayers for favorable results)

– We are looking forward to 12.21.25 when she will, Lord willing, be ringing that bell🔔 – signifying the end of her cancer treatment!!!

Thank you again for those who continue to pray, support, and care for Lydia and our family. We truly appreciate it.

 

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Lengthy August Update :

Lydia is still doing well. She had an upper respiratory infection & ear infection but thank God, she didn’t need to be admitted because she didn’t have a fever! Praise God for healing!

Lydia is getting back into the swing of things but tires pretty quickly. She handles her medication at home very well and she’s now a champ at swallowing pills! That makes things so much easier! (She takes her pills with yogurt if you’re wondering 😊)

We have some genetic testing coming up in a few months. We would really appreciate your prayers that her results come out favorably. (If you’re interested in the more in depth gene testing, I’ll explain more at the end)

Her hair is coming back in beautifully and in her words, “she never wants her hair cut again !”

Her oncology team says that “Maintenance looks good on Lydia.” She’s had blood work done, and no adjustments to medication is needed. Another Praise!

Lydia has had several transfusions during all of this and since starting maintenance she hasn’t needed any. But one of her levels she struggles to keep up is her antibodies. We are thankful that she is able to get them when she needs them, but we would rather her body produce more so she wouldn’t have to need one. The levels showed a decrease this time, it wasn’t low enough to need a transfusion, but pray her levels don’t drop lower. And again, I am incredibly thankful to you all who donate to help save lives! Lydia is alive today by God’s grace and selfless donors. We are so thankful!

To summarize:
1. Pray for favorable genetic test results.
2. Pray for her antibodies to increase on their own.
3. Pray that she continues to thrive and stay in remission.

Thank you!

Now for the more in depth gene stuff:

The gene they are testing is called TP53 gene mutation. It’s also called Li-Fraumeni syndrome. (LFS) is a genetic disorder that increases the risk of multiple cancers, including leukemia, especially in children. In a child with leukemia, LFS may lead to a higher chance of developing additional cancers, which affects treatment options and requires careful monitoring.

Li-Fraumeni syndrome (LFS) is a rare inherited disorder that greatly increases the risk of developing several types of cancer, particularly at a young age. It is caused by mutations in the TP53 gene, which normally helps suppress tumor growth.

If she were to have this gene mutation we would also have RJ and Abigail (as well as Richard & myself) be tested for it.

So it’s been one of those things where I just have to give it to God, the one who formed her body and gave her to us. He knows our concerns and cares. And I try not to think about this often. But the testing will happen in about 4 months. So please keep praying !

No News is Good news! 🧡🎗💛

Praise God Lydia’s blood work shows she’s doing well! No evidence of disease (NED)

We are 2 months into Long Term Maintenance and praise the Lord, Lydia is doing great! She is taking oral chemotherapy and a couple other medications at home. We go to the hospital once a month now and they didn’t need to adjust her medication, it’s exactly where they want it. (Another Praise!)

She’s still immunocompromised- but it’s not as serious as it was in the previous months. We still have to treat illnesses seriously and we will have to go to the hospital for any fever and other more serious illnesses.

So please keep praying she stays well and keep praying for her healing!

We are looking forward to her “End of Treatment” (EOT) date in December of 2025!!!

Praise God for His Goodness and Mercy and healing.

Would you also please keep her pastor, James Knox, in your prayers? He was just diagnosed with cancer and the doctors are still trying to find out how far it has spread. Please pray that is isn’t in the bones and that they will be able to treat it quickly and effectively. Our God is the Great Physician, please pray for Pastor James’ healing, wisdom for the doctors, and peace and comfort for him and his family during this shocking and difficult time.

I’m so thankful for the healing God has given Lydia this far. 🧡🎗💛

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!)

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

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.

 

 

 

 

 

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

Sometimes we just need to forget about medical issues and focus on life.

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.