Lydia Updates

Happy New Year! Lydia had her first round of chemo in the new year yesterday. Her levels showed her antibodies were low and she will need an infusion (donated plasma) to help boost her immune system. It’s pretty costly so they are submitting it for insurance approval now. This is the second round of chemo in this stage Interim Maintenance 1 (IM1) and she had a headache and stomach after. She also doesn’t have much of an appetite (quite the opposite of the induction phase.) Food she obsessed over and now food she can’t stand. I think we’ve ruined applesauce for her for ever. Since she has to use that to take most of her medications.

God is so good. We see his hand of protection and blessing all around us.

Lydia is doing well, all things considered. She’s a pretty happy child and she does get scared and nervous often. She overheard my conversation about her antibodies being low and it puts her at risk for infection. (Her body being her own worst enemy type of thing) and she cried and asked if she was going to die. That was the first time she has asked that. And it had to be while I’m driving on I-4, I wanted to pull over and hug this sweet girl right then and there…but it’s I-4, and I try to get out of there ASAP.

I did tell her that the Doctors are taking care of her the best they know how to. I told her no one is guaranteed their next breath, not healthy people, not cancer patients, not anyone. I pray to God that he will heal her and all those precious children we see in the clinic. And I’m so thankful we have hope after death.

Death is not a topic people like to talk about understandably so. I’m thankful for the shed blood of Jesus Christ, he paid the penalty for sin, so we wouldn’t have to. He died for the whole world and took our sin upon him. Through his death, burial, and resurrection he lives and through that we can trust in him to save us so we can have eternal life through Him. My hope, Lydia’s hope, and I pray your hope is in Jesus.

We are praying for an uneventful week off. She doesn’t have any at home medicine to take right now except things to manage her stomach troubles and prevent mouth sores.

It almost feels normal around here. It’s hard for me to let my guard down. So I feel like I’m basically on high alert 24/7.

Once we get going into this phase, that is when she will probably start feeling the full effects of the weekly chemotherapy. Praise God she’s responded well to everything so far. Please pray she stays healthy and that our family does as well.

I’m very thankful for my 11 year old son who is very understanding when activities need to be missed to reduce the risk of bringing home some illness.

I’m also thankful for my 3 year old. God truly blessed us with such an easy going child. She is so content and a joy.

I’m very blessed with a sweet family.

Thank you for your continued prayers.

-Sarah

Lydia completed another phase of treatment! Consolidation came and went, aside from two ER visits from a fever, she did great! Praise the Lord!

Now she moves onto Interim Maintenance. She’ll be getting chemo about every 10 days (IV) and that will probably take a lot out of her. The doctors check her blood work weekly and adjust the chemo depending on what her blood work shows. She will also have another Lumbar Puncture during this phase.

We celebrated end of Consolidation with Cinnamon Rolls!

We are still taking it day by day and we are thankful for the prayers during the good times and bad times.

We had our ER visit since Lydia’s initial diagnosis this past week. The precautionary guidelines are that she goes in when she has a fever of 100.4. Which she did late Sunday evening. They ran tests and she came up positive for the Rhinovirus (common cold) and was discharged several hours later.

We ended up back in the ER again with another fever, which I’m sure was there all along but masked by the Tylenol she was given by the hospital.

So, late Monday night/early Tuesday morning, we went back this time she was also having issues with a stiff neck. This time they wanted to admit her to wait until her fever broke and observe her.

Thankfully, Wednesday afternoon she was fever free and allowed to go home. The neck issue was attributed to a pulled muscle. Thank God.

She still has a cold and cough and she gets to recover the rest of the way from home. We are thankful she didn’t have to stay longer. Although this does for sure make me nervous about future illnesses/ ER visits. But we will cross those bridges when we come to them. We are taking it day by day.

Thank you for your continued prayers,
-Sarah

 

 

 

Thank you all for praying for Lydia. Her fever broke, and we were discharged early this afternoon. She’s still not feeling well, but at least she will be able to recover the rest of the way from home. The Doctor thinks Lydia’s neck discomfort/stiffness was from a pulled muscle. So thankful it wasn’t anything serious.

Thank you for your continued prayers.

Sarah Jacquet
Praise God for His Goodness and Mercy

Lydia’s fever came back, and she ended up going back to the ER in the middle of the night. She was admitted this morning. Her heart rate has stayed high, and she can’t really turn her head. They have no idea why.

She and Sarah are quarantined at the hospital. She can’t go into any of the common areas, and no visitors are allowed. They won’t discharge her until her fever goes away.

Thank you for praying.

Lydia had to go to the hospital tonight, as she had a fever longer than the allowable limit.

They have drawn blood and taken an X-ray. She is starting on antibiotics. Waiting on further news.

Thank you for praying.

Update from Richard

I apologize for not sending more frequent updates. There is nothing urgent, just a conglomoration of things I am frequently asked about.

First, we have had a misconception about the nature of the three stages of Lydia’s treatment. We had thought each stage would be easier than the one that preceeded it. She is in the beginning of stage two: consolidation / intensification. As the word “intensification” implies, this is not actually an easier treatment stage. She has been going to the hospital twice a week, and getting a lumbar puncture every week. This is also the stage of treatment associated with the most risk. Her immune system will be compromised for a lengthy period of time. This stage lasts 6 months. Not whining, just pray for strength and wisdom in decision making.

Her hair has started to shed a little bit. 😔

I was informed by our billing specialist at Medishare that, despite the fact that Arnold Palmer shows up as in-network on their website, it is not actually in-network. We were further informed that we would be liable for 20% of the hospital bills over and above our normal annual household portion if we don’t change hospitals for treatment.

I wrote a strongly worded e-mail last Friday, and got a call from Lydia’s nurse care specialist at Medishare on Monday. She encouraged us to continue with care at Arnold Palmer and Assured me she was “confident we will find a resolution.”

This was encouraging, but as you can imagine, doesn’t offer the same assurance that a “we’ve worked it all out” would/will. Please pray that this situation will be resolved quickly and favorably.

Finally, to hopefully clear up a common misunderstanding…

The genetic issue that had been discovered, and could have potentially complicated treatment, was IKZF1 gene deletion. This is the issue that we have now been told shouldn’t be a problem.

The genetic issue that MIGHT be pre-existing and/or hereditary is a TP53 gene mutation. This is still an open question. She will need to go to a geneticist to determine if this is something the cancer was creating or if it was a pre-existing genetic condition. That is low priority, however, and will be handled in the coming months.

I’m sorry for the long read.

Thank you all a million times over for everything you have done.

We could still use all the prayers you can spare.

Until next time,
The Jacquets

Things are going well. Lydia is doing great. We are getting back into the swing of things around here. Here are some things we’ve been doing.

• We had our 2nd annual “Ninja Bread Cookie Decorating” night. It was a lot of fun.
• Lydia is getting pretty good at taking care of her patients!
• Lydia got to visit her great grandmother (GiGi) and her great Aunt (Linda) and boy are they great!! We sure are thankful we got to see them!
• Lydia’s swelling is going down!

Thank you all for your continued prayers!

-Sarah

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Thankfully there’s not much to update other than weekly labs and lumbar punctures during this process. I will take these uneventful days with joy! Interstate driving is probably the most dangerous part of this whole thing. (Mostly kidding)

Again, thank you for all the love, support, and prayers for Sweet Lydia during this time. We so appreciate it!

-Sarah