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Faith Santiago
Faith Santiago
29578
visits
Faith Santiago
29578
visits
Faith's CaringBridge
Faith Santiago
29578
visits
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My Story

Meet Faith, a sweet 3-year-old girl who was diagnosed on 3/10/23 with B-cell acute lymphoblastic leukemia (ALL), a type of cancer that affects the blood and bone marrow. To learn more about ALL, see here. (https://www.stjude.org/disease/acute-lymphoblastic-leukemia-all.html)

Faith's mother, Francheska ("Cheska"), is doing everything she can to support her daughter during this difficult time. Cheska cares for Faith's sister, Franny, and has to stop working to be her daughter's full-time health caregiver. DO NOT give any tributes through the site. She will not receive any of the funds. This Caring Bridge website is intended to update family and friends. All has been set up to help reduce the strain on Cheska's finances from taking time off work while supporting the family in this season of treatment and healing.

We know this precious family is trusting the Lord to heal Faith while bravely facing the upcoming challenges of Faith's treatment and care. We have an opportunity to come alongside the family with prayer, generosity, encouragement, and love. Please keep Faith, Franny, Cheska, and their entire family in prayer, and any generosity is deeply appreciated in this season!

DO NOT GIVE TRIBUTES/DONATE on this site. I did not receive any of the funds sent here. 
Please look at the information below.

Below is the information for any financial support you wish to provide. Direct transactions are the best way for the family to receive the exact amount without fees.
Zelle - cheska.b11.93@gmail.com (Francheska Bezares)
Cash app - $cheskabezar

Thank you for joining Team Faith!

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Update on Faith

It's taken me days to understand Faith's last appointment on Wednesday. We went to the clinic unscheduled to check her cortisol levels to see if that could explain some of her symptoms.

After meeting with the Pediatric Advanced Care Team and the oncologist, the conclusion is that there is really nothing to explain Faith's current symptoms. The theory is she is emotionally distressed from what she had to endure and has developed a physical manifestation of the mental and emotional toll. On top of that, she could be experiencing chronic pain, or it's the cortisol levels are off. Or they are interchangeable. A day after this visit, the cortisol levels are normal. So that leaves us with Faith being emotionally distressed and manifesting physical symptoms and chronic pain. Emotionally, Faith appears to be happy; personality-wise, she is still very much her silly self. She wakes up in the middle of the night on any given night with back pain, nausea, vomiting, or a headache and blurred vision. I'm leaning towards this, maybe more than an emotional response.

She got a referral for occupational therapy to help Faith's fine motor skills and see if it helps with the neuropathy. She’ll be starting on Monday. She also got a referral to a chronic pain clinic at Lurie’s for evaluation. Still, we weren’t able to get an appointment until April, which is awful considering that she is in pain every day, all day long. She will still play and interact through her discomfort.

The team believes that having Faith in school would help her cope better and be able to manage her symptoms. They strongly recommend I find ways to get a break. “You both need space,” the doctor ordered. How can I make that happen? I’m still not sure how it will happen. The risk is Faith becoming sicker with viruses, which the doctor said is a sacrifice we have to make to help her cope with emotional and mental development.

Faith's pain some days is manageable most of the time with medication. But the discomfort doesn't go away. Some days are more challenging than others, and we both cry more. I don't want her to feel my frustration, but protecting her from my current state of mind has not been easy. I feel defeated. She has become more needy, and I am depleted. My heart is broken, and I don't know how to move forward.

Franny has had a rough time this month, yearning for her father's acknowledgment, attention, and validation. But she has had her beautiful heart broken once more and asked me for a new dad. Faith is okay. She often asks for her dad as well. Please pray for these girls that they will know God is a good Father. He will never reject them, and He can meet their emotional needs.

Thank you. Happy New Year.

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FAITH Update

Faith had her audiology test this week; she did great. Unfortunately, she has a few issues she's dealing with: inflammation, Eustachian tube dysfunction, and hearing loss. Most of these are medically induced. The audiologist insisted she would do her best to help us work with an ENT and speak with the oncology team to see if medications could be switched to help prevent the hearing loss from being too severe. This also means more medications will be added to the list of medications she already takes. 

Her condition has not changed since we left the hospital. She is not feeling well every day, all day. Today, Faith is crawling on her knees from the pain in her feet. So I've had to carry her to and from the restroom. She has constant headaches that wake her up in the middle of the night, intense nausea, and blurred vision. She's dizzy and hot but doesn't have fevers. And the list of symptoms goes on. 

The doctors don't have answers, and I don't know what to do anymore. Nothing helps her remain comfortable, and her discomfort has become overwhelming. I feel stressed and frustrated. I am helpless. She wants to go to the hospital, but there is not much they can do for her that the oncologist hasn't recommended I do at home. I don't know what to pray anymore. I don't know what to ask for. She is uncomfortable. Faith told Franny that I was being hard on myself because I didn't know what to do to help her. 

Please pray for us. 
Faith's body.
Franny's heart.
My mental state is not well. 

Thank you.

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Clinic Visit - Faith Update

Greetings,

Faith had clinic today, and thankfully, it was short since her LP was rescheduled. She was terrified to have her port accessed, and it took me and two other nurses to hold her down. Unfortunately, she was poked three times before the needle was placed properly. She is still not feeling like herself. She has daily headaches, facial pain, her eyes hurt from the light as well as blurred vision. She has back pain and leg pain/ tingling, and it's in her toes as well. The doctors believe it's from nerve damage in her spine as well as vincristine neuropathy; vincristine is one of the medications she is on as part of treatment. 

Her stomach hurts every day, all day, and she has intense nausea. We still don't have a definite answer to this. Faith has also developed an "itchy" sensation in her ears, which could be a ringing or tingly sensation. The doctors think it could be some hearing loss, and we will meet with an audiologist soon. 

She is still smiling and playful most of the day, which helps with everything else she's feeling. Thank you for your prayers, and please continue to pray for strength in her body to handle the medications and for the newly added meds as well, as she had a couple of med doses go up. Continue praying and believing for healing and that there will be answers to her symptoms. Thank you. 

Some have inquired about gifts for the girls, but they are taken care of. We had a generous donation, and the girl's faces lit up. They are very excited. If you still want to give or help, we could always use help with payments for ComED and People's Gas. If you are interested, I could send the information, and the easiest way is to mail a check to the organization. You can also send any amount using the payment information below, and I can make the payments. Thank you for your support. 

Zelle - cheska.b11.93@gmail.com (Francheska Bezares)
Cash app - $cheskabezar

May you all enjoy this beautiful season and have a very Merry CHRISTmas!

"You, God, are my God, earnestly I seek you; I thirst for you, my whole being longs for you, in a dry and parched land where there is no water. I have seen you in the sanctuary and beheld your power and your glory. Because your love is better than life, my lips will glorify you. I will praise you as long as I live, and in your name I will lift up my hands." Psalm 63:1-5

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Today's update

Hi everyone,

We still don’t have an official diagnosis but we have new medication that will hopefully help with the headaches and extra fluid.

Faith is feeling well enough to go home.

We are all set up for her antibiotics to be administered over the course of the next four days by a nurse at home.

Thank you all for praying.

Please continue to pray for a proper diagnoses. God bless!

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Tuesday, December 10, 2024 - Faith update!

There are no malignant cells in the cytology! Praise God! The blood flow in Faith's brain is normal. We are waiting on the kidney ultrasound report.

We will go home by tomorrow night. They have arranged home health for her antibiotics and are setting everything up so Faith can leave the hospital by tomorrow night.

The neurologist has not reached an official diagnosis and is going to try a migraine medication to help with the headaches and to flush out the extra fluid in her CNS. Her first dose is tonight.

Tomorrow she has her port change, please pray it goes well. She has been poked about seven times, not including her LPs, during this hospital visit. So I'm hoping I don't have to hold her down.

Thank you all for the continued prayers. The Lord is kind, and He listens to our heart's pleas. He is a good listener and a good Father.

God bless you, and may you rest in perfect peace. 

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Monday, December 9, 2024 - Update on Faith

Hi everyone,

I am so grateful Faith has not gotten a fever, and it looks like we can go home soon. We are still in the hospital for more testing. Unfortunately, her CSF cytology has not been completed, and we should have the results by tomorrow morning. She had her TTE (for her heart) done today because of the high blood pressure, and thankfully, everything is normal.

In the meantime, Faith will have her kidney and intestines ultrasound tomorrow. Please pray these will take place early morning, so she isn't going all day NPO (without food).

She will also get an MRA this week, which is an MRI of the brain to see blood vessels and blood flow. That requires another sedation, which is a lot for her little body. So pray for her strength. She is showing signs of coming down with a cold.

I know that due to all our prayers, the doctors are being thorough, and I am extremely grateful, even if it means we will have to be here a little longer. The goal is to be home by tomorrow night; the hospital will teach me how to administer the rest of Faith's antibiotics through her port safely at home and de-access her so we can finish treatment at home. Lord willing, all goes according to plan.

Thank you for your continued prayers.

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Today's update

Faith made it 24 hours with no fever 🙌🏽😭

Thank you so much for praying!!!

Sunday, December 8, 2024 - Faith Update

I know it's been a long week, and we're all holding our breaths and hoping she doesn't have cancer in her CNS, but we have to wait one more day.

The oncologist is waiting for a cytology report of her CSF to come back to rule it out for sure.

I spoke with neurology this morning. They have reconsidered her CNS pressure results and are thinking that she would have had a higher-than-normal level had the four tubes not been taken out the day before. They think she could be experiencing idiopathic intracranial hypertension (IIH) – tension headaches. Which would explain most of her symptoms. They are still trying to figure out the cause of the extra fluid buildup in her CNS and are trying to see if her chemo medications induced it. Thankfully, we can give her some medication to help her body flush out the extra fluid and lower the pressure in her brain.

Infectious disease and oncology doctors think the fever could be a sign that two different things are going on; one, she had a bacterial infection in her CNS, and the antibiotics were fighting, which is why her CSF fluid was showing some white blood cells. And that the other symptoms are more neurological.

Her blood pressure has been high all week, she will get an ultrasound of her kidneys to make sure that it is not a contributing factor of her symptoms. Faith got a fever last night; she had a headache and blurred vision all day. She’s had some nausea and pain in her eyes. 

Thank you all for your continued prayers and support. This has been such a scary ten days of non-stop fevers. But hopefully, we are finally narrowing down the issue and can start to alleviate her pain.

God bless you on this sunny Sunday, though we haven't looked out the window because of Faith's eye pain. I can tell it's a beautiful day. 

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Saturday, December 7, 2024 - Faith Update

Hi everyone,

Unfortunately, there is not enough in the samples they've collected from Faith to have a diagnosis. She had another lumber puncture done today to measure the pressure in her CNS; it didn't have a strong enough pressure to help the neurology team figure out the issue. However, four tubes were removed Thursday, and another four were removed today. So, it has helped with her headaches but does not give us an answer for why she had so much fluid accumulated. There are no definite answers to why her CNS is inflamed, and they are doing further testing on the CSF that will take till Monday to get back.

Faith did get a fever last night, and we have to stay tonight for further monitoring. The oncology, neurology, infectious disease, and the doctors on the floor have been in the process of elimination. So far, what they think is happening is Faith has an infection in her body that they have not been able to identify, which caused the inflammation in the CNS and extra fluid buildup, causing pressure in her brain.

The eye exam yesterday was a complete nightmare. Faith was terrified to have the eye drops put in her eyes, and it took three tries of holding her down with three other nurses to get the drops in her eye enough for the medication to work to have a proper exam. Thankfully, her eyes don't seem to be damaged from the swelling.


Unfortunately, her eyes are still hurting, and she's kinda dizzy, but she is having fewer headaches, the duration of time for them to go away is less, and she has fewer fevers. If she makes it without a fever tonight, we can go home by tomorrow.

Please continue to pray for answers. Faith has had a very long and hard week; going home with a confident reason why this happened would be amazing. May the Lord reveal it to them and help us know how to prevent her from going through this pain again.

Thank you all for your prayers. 


Also, if you are trying to send your financial support and donate through the site, we will not receive those donations. They go to the website. You can call the website and receive the money back to donate it directly to us. Thank you.

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Anonymous
December 7, 2024