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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

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.

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

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
 

 

 

 

Hello all,

Thank you for your prayers during Lydia’s hospital stay at Bible conference time!

Lydia finished her current stage of treatment (Interim maintenance 1) today. That included a higher dose of the medicine that caused the mouth sores that took her to the E.R. last time. Please pray that we can avoid another E.R. stay.

I was under the impression that she went straight into the next phase of treatment (Delayed intensification 1) immediately, but she actually has a bit of a break before she starts that phase. She will lose her hair within two weeks of starting DI1.

Being that I was under the impression she was starting DI1 today, we did rush to get the garage converted into a third bedroom. What we thought was just in time, turns out to be a little early. God is good.

Please continue to pray. I know that life has a tendency to crowd in and push things out, even things that you’d think you’d never forget. We are constantly blessed by those who have told us they pray for us continually. I am sure that it is in no small part thanks to those people that Lydia is doing as well as she is.

Thank you all again, for everything you have meant to our family,

The Jacquets

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P.S.
For those of you who are interested, this is an outline of the tentative post-induction treatment schedule. It was copied and pasted from someone who has the same diagnosis, and must have gotten a much more understandable treatment plan than we got 🙃

Consolidation :  3 weekly Lumbar punctures. Daily oral chemo- 6-MP

interim maintenance 1 :  vincristine/methotrexate via port every ten days. LP on first day.

》Lydia is here《

DI 1:  LP on first day. 3 weeks of doxorubicin and vincristine. Peg on day 4. Last week check counts. Steroids for 7 days on, 7 days off. (Twice)

DI 2: 2 weeks of intense chemo. Cyclophosphamide, LP, Ara-c shots 4 times a week. 6-TG pills for 14 days. Break for two weeks to check counts.

Interim maintenance 2: same as IM1. Methotrexate and vincristine every 10 days. LP on day 1 and day 29?.

Then LTM. Check ups every month… chemo and LP every 3 months.

Lydia was able to receive an infusion yesterday. The goal is to give her immune system a boost to further prevent infection. We were waiting for approval from insurance to deem it medically necessary, and thankfully she was able to get it approved. She did well during the infusion. They give her Benadryl to help prevent any possible allergic reaction. She slept through the whole 3 hour process and praise the Lord she didn’t have any negative effects.

As for now, we are picking up where we left off. Getting ready for another Lumbar puncture + chemotherapy soon.

Please continue to pray for healing for this sweet girl. She had a bad experience in the emergency room last week getting her iv and blood work done and it’s caused her to fear that process even more than she already does. However, she is such a brave, sweet, and sometimes spicy little girl. We love Lydia so much and we are thankful for the blessings God has done through this all so far.

How to pray-
-Remaining mouth sores to heal
-The chemo would not cause any new sores
-comfort and peace when she gets her iv accessed & de-accessed.

Answers to prayers-
-The chemo is doing its job thus far
-She was able to receive the necessary medication to help her immune system

Thank you all again so much for keeping up with these updates and for your continued prayer.

We appreciate it so much.

-Sarah

Sorry for the infrequent posts. There hasn’t been much to update. It’s more of a “no news is good news” sort of thing. That was the case until this past week.

Lydia developed a few mouth sores and we were monitoring and treatment them at home and it turned into Mucositis, her sores got much worse and spread all over her mouth and throat.

We were advised by her team to take her to the ER and get her checked put. What we thought would be a late night ER visit with a check up and discharge with meds ended up being an admission and a 2 night stay in the hospital.

The doctors determined it was not viral, it was a side effect of the chemo. So we’re able to be discharged Friday (19th) with meds at home to keep treating her pain and trying to get the sores to calm down and heal.

Things that are not a big deal for a healthy person can be very serious for a cancer patient. Infections can get bad very quickly, and we are thankful for a great team who is always taking care of her.

Chemo has been every 10 or so days, and we go back Monday to see if they are going to hold her next chemo treatment or if she’s healed enough to continue. If she can continue, she will have another Lumbar Puncture Tuesday, with another dose of chemo.

We are thankful for the quiet slow days and we are thankful for a wonderful Oncology team who is providing such excellent care.

Thank you for your continued prayers.

Please pray for

-Her mouth sore to heal and that we will be able to keep them from coming back

-Encouragement. Her hair is already thinning and we are expecting to see hair loss soon

-Strength & Comfort for our family during this difficult time.

God is good & faithful he has provided our needs.

-Sarah J

Lydia had chemo Friday. Everything went well, although she did have some nausea today which isn’t usual.

They want to give her an antibody infusion, but that is waiting on approval as “medically necessary”.

The doctor said that she should be okay going to one night of Bible conference, as long as we take the usual precautions.

Her next lumbar puncture is on the 23rd. Her next stage of treatment, which includes new chemo medicines, is starting at the beginning of February. This is when she will definitely loose her hair, if the gradual thinning that has been happening doesn’t run it’s course first.

Sorry for the infrequent updates.

Thank you so much for all your prayers, love, and support!

Lydia has always loved flowers – all kinds of flowers, all kinds of plants – anything that grows. Grandpa brought over a couple of his older David Austin Rose catalogs for Lydia to look through, and she has thoroughly enjoyed it. Some time spent outside in her flower garden and looking at pictures of roses is a great way to get her mind off of medical matters.