Lydia Updates

Exciting news! We have officially received word that Lydia’s Leukemia is in remission!!!

We are not out of the woods yet. We still have 2 years of treatment ahead of us, but the first stage was successful, and we are moving on to stage 2.

Thank you all who have been praying, and please keep it up. We are blessed beyond measure.

The Jacquets

Before we move forward with the next stage in her treatment, she got to go to church! She was able to go to Junior Church safely and she was able to visit with her friends that she hasn’t seen in weeks. It sure lifted her spirits to go today! In the meantime, while at home we’ve discovered her talent for painting! She’s painted, painted, and painted some more! She plans on giving some away to her friends and family.

Treatments pick back up Tuesday and Wednesday. Thank you for all your continued prayers!

-Sarah

We finished the Induction Stage of this journey! The test results from the two procedures she had will tell us what our next step is in this process. We learned from the last lumbar puncture that Lydia needs to lay still longer than the 30 minutes they usually have us stay there. I’m so thankful for the team of providers that are overseeing everything. They listened to our concern about her last spinal headache (that lasted 3 days – so awful to see her bed ridden for days) and gave her fluids and let us stay in the clinic until we felt comfortable enough taking her home.

Now we wait for the results. All of the test results are important, but this one will tell us if she was able to achieve remission and if they can move on with treatment or if she failed induction, then she will be considered high risk and will need to be treated more intensively.

We are also waiting on results from the genetic tests they ran. I will talk about that more depending on the results of their findings.

Thank you for your continued prayers.
-Sarah

We got some not great news today. Apparently, despite the chromasomal advantage that we were told she had against her leukemia, Lydia has a “gene deletion” issue. This condition is rarely ever seen with her chromosome situation, so the doctors are somewhat stumped. Basically she is now out of the 97% estimated success rate she had been upgraded to previously, and is back in the 85-95% range.

In addition, there is a genetic mutation that was found that has one of two possibilities:

1. It is being caused by the cancer, in which case nothing really changes from what we already knew.

2. It predated her leukemia, and is in all her cells. If this is the case, it means she is genetically predisposed to getting cancer and will need to be regularly screened for the rest of her life. Additionally, the other kids would also need to be tested for the mutation, as it was likely passed down through either Sarah or myself.

All of this is pretty discouraging, and we are doing our best to remain positive and optimistic. It is not, however, all bad news.

She has a marrow biopsy tomorrow, and the blood work she had today indicates she does not need a transfusion to prepare for it. Good blood levels are a good sign that the treatment is working.

Also, she has not yet been classified as a “high risk” case. The marrow biopsy tomorrow will be definitive in letting us know what to expect. We will get the results early next week. Ideally, she should be in remission at this point. Please pray that the marrow biopsy shows remission!!!

Please pray for strength for us, guidance for the doctors, and healing for Lydia.

Thank you all for everything,
The Jacquets

Lydia finished her last Dose of steroids tonight! (For this phase anyway) Yes, there will be more steroids in the future but it will not be like this. We are finished with the induction stage and we are praying for good results back from her procedures on Thursday.

The swelling from the steroids will go down over time. I am so thankful we got through this. Lydia says, “We are doing hard things together.” Something Miss Shelby (Child Life Specialist) told her in the beginning.

Thankful we can do hard things together with Christ.

Philippians 3:14 I can do all things through Christ which strengtheneth me.

He is our source of strength and comfort.

Thank you for your continued prayers.

-Sarah

Painting has become one of Lydia’s new hobbies. She quite good in my biased opinion 😁

“Spaghetti and meatballs” and no, she doesn’t have meatballs in her cheeks. That’s swelling from the steroids. Can’t wait until that side effect goes away!
Busy week this week! Keep praying!

We had a short celebration yesterday celebrating the fact that the gofundme page reached and exceeded the goal! Just a month ago my dad, Michael Rush, organized a gofundme page on our behalf knowing the high deducable we had for our Health coverage. He arranged this special celebration [on his own and out of his own pocket] to print up a “big check” to present to our family. He went above and beyond to make that special. Thanks, dad!

We are so thankful and amazed at the kindness from friends, family, and total strangers. God has placed such wonderful people in our life. We are truly blessed. We have a long road ahead of us. Please continue to pray for Lydia and the rest of us as she still fights the cancer and the trials that come along with it. Again thank you to everyone who has prayed, donated, and helped in many other ways. We are so grateful.

This week’s prayer is that Lydia’s procedures will go well on Thursday and the results will be favorable!
Thank you again for your continued prayers and support. 🧡

Hello, prayer warriors.

We have been blessed beyond measure by the outpouring of love, support, gifts, and especially prayers on our behalf. Thank you so much!

This coming week brings us to a major milestone in Lydia’s treatment. The first 28 days are called the “Induction phase.” The goal of this phase is to induce remission. That 28 days ends on Tuesday. On Thursday Lydia will have another lumbar puncture and a bone marrow biopsy to determine if remission has been achieved. Please pray to this end!

Assuming that she is on track, the last of her twice daily steroid regimen will come to an end. The steroids have made her cheeks and tummy quite puffy, a fact that she is quite self conscious about. It may take as long as 3 or 4 months for the swelling to go down.

The advice we have gotten from others who have been through this is to keep her home during the entire induction phase. This is why she hasn’t been to church. If we are able to move forward, her church attendance will be a week by week decision based on her ANC numbers (her ability to fight infection) for the next six months. She will likely have to wear a mask when at church/in public.

The rest of the e-mail can be viewed as “optional.” Several people (especially those with medical training) have asked for more details, which I will provide, but the above update is perfectly fine to know what to pray for.

Treatments have been going very well. The cancer is responding rapidly to the chemo, and everything seems on track for her to have a good result from her 28th day biopsy.

She has not needed any transfusions for her in-clinic chemo sessions. Praise God!

Her port is functioning normally. There has been no infection and it’s flow is good. She will likely have it for about 3 years.

Her “absolute neutrophil count” (ANC) is a number that will have much influence over her (our) life for the next 6 months to two years. This number indicates how many infection fighting white blood cells are present in her blood. The lower her ANC, the more careful we have to be to keep her from getting sick.
Her ANC has been going up with every test since she was in the hospital last month. That is a blessing.

Sickness in the family is something that we are ill-equipped to handle at the moment. Lydia and Abigail typically share a room. Right now, Lydia is sleeping in our room. So far, the only illness in the house has been Abigail getting sick, and fortunately she was able to stay with grandparents for the duration. However, we don’t have a great way to deal with Sarah or myself getting sick, or several of us getting sick at once.

I am getting ready to start on a garage/bedroom conversion so that we can deal with these situations better.

Probably the hardest part of this chapter of our lives has been how much she has changed. As previously mentioned, the steroids have made her puffy. Her hair is now cut short, in anticipation of future changes. But those are minor. The haircut is actually even kind of cute. Lydia is just not herself.

Between feeling physically ill from the medicine, isolation from her normal life, and self consciousness about present and future changes to her body, she is just a very sad shell of the happy girl she was. It is very hard for a parent to see their child lose the joy from their life.

With prayer and God’s blessing, we hope that the news we receive next week will start her on an upward emotional trajectory. Thank you all again!

Thank you for all of your continued prayer!
The Jacquets