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Mia’s Story

Hello friends and family-
Thanks for visiting Mia's website. But more importantly thanks for all the prayers and support coming Mia's way. Mia's leukemia diagnosis sent us in a torrent of emotion and chaos. But in the past few days, we have felt our friends and family rally around us in agreement for Mia's speedy recovery. Thanks so much. God's grace has been shown through you.


Mia has always been healthy and quite resilient. If you know her, you can attest to her character as being head-strong and decisive (ok, sometimes bossy). She loves ballet and all things Disney princess, just look in her room. She lacks no self-confidence and has no qualms performing random Christmas Carols, Disney songs and (don't tell Daddy) I'm a Barbie Girl, in a Barbie World.

We first noticed Mia was ill, Tuesday January 5th. She had a low grade fever and said her back hurt, but 20 minutes later she was running around with brother Sebastian. So no further concerns. When the fever didn't go away by Friday, mom and dad took her into the doctor. He checked her urine and found no problems there, told Em and Jaime to bring her in if she didn't improve. Sunday night we had family night, Mia was tired, had fever of 101 F, but looked ok and had no other symptoms. We were a little concerned, we prayed and Em vowed to take her back to the doctor the next day.
Then, Monday happened. Mia was very lethergic, fever remained the same, and her eyes were puffy. A quick blood result at the doctor showed white blood cells off the chart (a marker for leukemia) and extremely low hemaglobin (sign of anemia). Her liver and spleen were enlarged and distending her abdomen. They were pretty sure it was leukemia, but wouldn't know 100% until a bone marrow biopsy told us for sure. We tried to believe it was just a bad infection (maybe just a virus, they said) but when an ambulance showed up to rush Mia to Driscoll, Corpus Christi, it was omenous.
Sure enough, Monday night we were assured it was leukemia. Chemotherapy would start the next day. With that shock under our belts, we couldnt imagine anything being worse. But Tuesday escorted us into the ICU when Mia developed respiratory distress. 6 hours after her first chemo treatment, her breaths became fast and shallow, her blood pressure plummeted. She became combative and confused "You are not my friend!!! Only Sebastian, and Sinai!". The rapid break down  of the cancer cells sent toxins through the blood and caused Mia to go into septic shock, a dangerous downward spiral of low blood pressure, decreased oxygen to all organs, and a fast heart rate. Immediate intubation was done (breathing tube), Mia was sedated, and multiple drugs began infusing to help her body excrete the toxins. Her kidneys working overtime, her heart enlarging due to massive work of pumping the extra fluid, her parents by her side every minute watching over their precious baby while she struggles to fight cancer.

Latest Journal Update

Turning 9 and Starting a New Life

Today Mia turns 9. She woke up with a smile on her face and bouncing with energy. Things are really changing for her. Let me catch you up on the past two months- sorry for the lack of updates!
Mia's recovery from brain surgery took a good month- for the first 3 weeks it was awful. The constant pain in her head only lasted a week; she couldn't even handle the slight jostling of going up stairs or riding in a car. She was also very withdrawn, had nightmares and was skittish. Who wouldn't be after a traumatic hospital experience...oh and two brain surgeries. But after that passed, then the intense stomach pain and nausea set in. We held out for about 2 weeks but after nights of tears and pain we took her into the ER where they started her on Zofran. It did not work. 
So after another 5 days of horrible nausea, her neurosurgeon thought it might be gastritis and sent us to her pediatrician. Mia really hated being in the ER the week before, more and more she is very withdrawn with the doctors, nurses and said over and over "I just want to go home, Please don't make me stay the night." I think this kid has had ENOUGH of hospitals for a lifetime. Her pediatrician agreed with the gastritis and Mia immediately started Prilosec. Within 3 days she was a different person. It was like once the pain and nausea was gone she could enjoy her new found freedom from seizures and mental fog. She just took off after that. Every morning she was jumping out of bed, wanting to ride bikes, be outside, go to school, be with friends, walk the streets of Old Town, be in every sport and talk to every person who walked by our house. Jaime and I couldn't believe it. She just embraced life and her confidence level just began to really rise. We had decided to push her on to 3rd grade even though she remains delayed in school by a grade; her IEP team agreed Mia's confidence in school is very much wrapped up in her willingness to learn. It was the best, God directed decision we could have made. Suddenly Mia loves school, is becoming more sociable (she had become very withdrawn, sensitive and anxious by last spring- she did not like school at all) and making new friends. 
On her first day of school she only went for a few hours- it had only been 3 weeks post surgery and she was still only able to be out of bed for a few hours. But she wanted to be there. Guess what she did? When it was her turn to share about something unique about herself- she explained that she had brain surgery, showed off the scar and let a few of the boys touch it. That's Mia! Just embrace the challenges, get it out there and don't hide behind the obvious. Jaime and I did not instruct her to do it...it was something she felt she needed to do, I guess. 
Once the Prilosec got in her system, it was like a new Mia...YOLO (you only live once) was her  motto. Quite fitting for a cancer and epilepsy survivor and brain surgery patient. 
THE BEST NEWS- she has not had a single seizure in 2.5 months. This has never ever happened since she began having seizures at age 4. I think her brain being free of seizures and the constant recovering of a seizure (takes up to 2 weeks for a brain to recovery for even a small seizure) is why Mia is thriving so much. Her neurosurgeon who is pictured with her in this Journal says that this is a very strong sign that the surgery worked and that the other damaged areas of Mia's brain are not going to start acting up and begin seizing. Please be praying this NEVER EVER happens. We had realized that Mia was having more frequent seizures then the once we would document- many would happen right as she was waking up in the mornings; when I saw on video the one that was captured in the hospital I told the doctor, "Um she does that a lot." Yikes poor kid was probably having seizures every few weeks for the past 4 years. Wow.
This is all awesome, amazing, life changing news. BUT, we have hit a snag along the way and a new kind of doctor has been added to Mia's life...she now is having to see a Gastroenterologist. Mia's stomach pains and nausea have come back on a regular basis and in the past week it is at least 4 days a week. She is still on Prilosec and we are really being careful with what she eats. Still, it is begin to effect her again. To many sick days and Mia's spirit begins to sink a little. This afternoon, she is already bathed, in pjs and settled on the couch. NOOOOO says my brain. She needs to be completely free of pain, nausea and any other reoccurring sickness. 
Next week she will have her blood tested for several intestinal infections or viruses. Please be praying that there is a simple and effective fix to this problem. Hey, the girl just kicked cancer and epilepsy- stomach issues should not be to hard. Her doctors (and Jaime and I agree) that we do not want to do to much invasive testing just yet- Mia still seems to have anxiety and stress about being around any hospital, doctor and clinic. So, please pray we figure this out and Mia rebounds back to the YOLO way of life. 
Did I mention she is running a 5K with her Girls on the Run group? I am telling you....nothing is going to keep this 9 year old down. Your continued prayers are appreciated as we try to cross this last (in Jesus name!) hurdle to an amazing, exciting, adventure-filled life for our girl. 

Much love to you all!

Emily

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Comments

8 Comments

Melissa Lucio
By Rick & Melissa Lucio
Continued prayers for you all.
Karen Macias
By Karen M. Macias
It is awesome that Mia is doing so well. God is amazing and so are you all! Prayers for her continued improvement. God Bless. We miss you all here in South Texas.
FRANK DEL ANGEL III
By FRANK DEL ANGEL III
INCREDIBLE NEWS!! We are all pulling for her down here in South Texas!!
Jeffrey Abyad
By Jeff Abyad
A 5k?! Oh my goodness. ha! Love you guys and continuing to pray for you.
Gina White
By Gina White
You are an amazing family. It's no wonder Mia is so courageous and takes life on as she does. She has great examples set by her parents. Your energy and smiles are always uplifting. You are an impressive crew ...
Barb Boulanger
By Barb Boulanger-Diedrich
You GO girl. You are amazing. I am thrilled at how well you are doing.
The Good Lord has shown upon you in all his glory. He loves you
very much, as we all do. Blessings Mia, and also to your family.
Vitiello Family
By Nuri
Today has been a day full of blessings and just topped it off ❤️❤️❤️❤️
Thank you for sharing