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.
Better Days, Old Medicine
Nov 30, 2013 10:04pmI hope everyone had a wonderful Thanksgiving holiday. We spent the day as a family; unfortunately Mia spent most of the day in bed with a headache. But she was good for our annual performance of The Nutcracker (photo from this past Friday night) Still, we have seen some better days. Let me catch you up.
So, Mia's spinal tap fluid came back clear of any leukemia or signs of cancerous cells. THANK YOU GOD! Her spinal fluid level was a bit on the higher end of normal so they removed some. One theory was that higher pressure was causing her constant headaches. But no- instead she was in bed for 3 days with a migraine and bad headaches. But it passed and we continued the search.
Last week, after another attempt at a new medication and Mia suffering thru some crazy side effects Jaime and I said ENOUGH! Poor Mia has spent most days since June fighting thru side effects of 4 different epilepsy along with daily headaches. These side effects, many hitting at the same time, include: nausea, fatigue, drowsiness, dizziness sometimes so severe she has to crawl on the floor to get from one room to the next, blurred vision and hallucinations. Meanwhile she has continued with constant headaches about 4 days a week. It has been rough on her.
We are always looking for what is causing the headaches- most likely it is the chemo and brain trauma she suffered in the beginning of treatment. Finding a way to cure them is the problem since Mia does not handle medication very well.
Jaime and I decided along with her awesome pediatric neurologist to return to the original seizure medication Topamax. Mia was on this medication for her seizures but lost the ability to sweat and was at a concerning low weight- both side effects of this drug. This time though, Mia will take Topamax as a migraine medication (it is used by thousands for headaches and migraines) and not epilepsy so she won't have to have such a strong dose. Still, I have already begun to see some slight side effects- her appetite has gone down. Still, it may be working.
Last week, Mia went 5 days straight without a headache. She was happy, full of energy and working hard at school. It had become so heartbreaking to watch her close her self off more and more and just want to be in bed for days. We were so happy to see Mia returning to her old self.
More great news- she hasn't had a seizure (neither partial nor complex) seizure in 5 weeks. Wow- it has been a year since she has gone that long without a day of seizures. We are so happy about that!
Still, the hunt for the cause of these headaches/migraines is on. She is in a delicate state still- one day of not getting enough sleep or a small amount of sugar and she is having a rough few days. We are starting to learn the triggers, but having her live a life free of pain would be great.
Brain surgery is still an option and she will undergo another functional MRI in the next month. I am prepping her a bit more this time- we are listening to the "alien" noises at home so she won't be as scared when she is awake in the MRI machine. Please pray she gets thru it. Although the surgery would be scary- it may the be the answer to freeing Mia of having to live on medication for years or the rest of her life. These tests are just to see if she is even a candidate. They conducted a 4 hour test of her vision- she passed with flying colors. The girl has 20/40 vision which is a miracle since in her first month of chemo she lost the ability to see anything that wasn't a foot in front of her.
We know God is with Mia, that He has the answer we are all looking for. Thank you for praying- God continues to strengthen us as a family as we wait for His perfect time to restore Mia to her full healing.
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