Superhero Avalynn

- as told by Avalynn's mom

December 12, 2016  will forever be a date burned into our memory. That was the day our precious 4 year old was diagnosed with AML leukemia acute Myloid Leukemia.

 

For a month or so prior she had been in severe mouth pain from back molars coming in on both sides. We kept her comfortable with a tylenol and ibuprofen regimen 'cause that's what you do when you have a teething "toddler". She was having mild night terrors of screaming out in pain. And sometimes mild fevers . . . again we thought due to teething.

 

Her pain wasn't going away and her gums were looking weird, teeth weren't pushing through gums, but rather gums were just lifting from teeth coming through. So we finally took her to the dentist, and the dentist only said that it was her 6 year molars, to which our [response] was "she's only 4." But there was no real solution, just a possibility to look into getting gums removed, and keeping her comfort with over counter meds.

 

3 weeks went by with nothing changed. On December 11, she spiked a 104 fever, which we promptly got down with a cold long bath, but she just didn't look right. The next morning, she woke up with step throat. So we got her the first available appointment to see a doc. 11 am was her appointment. By 12:15 pm, she was being rushed across town in an ambulance to the ER. From there it was determined that she had a form of leukemia. We were transported by ambulance to UC Davis Medical Center in Sacramento that evening (1.5 hours away).

 

From there, life became a whirlwind. Shock, questions, doctors, nurses, tests, meetings, hospital, more tests, more doctors. Our daughter definitely had cancer. And not the common form that most children are diagnosed with, but a rare and brutal cancer called Acute Myloid Leukemia.

 

Where do you go from here? You do the next right thing in front of you, the next right decision. So we did. By Thursday that week she was in surgery getting a port placed, called a broviac. And by Friday she would start her first of what later would be 5 intense rounds of chemo over a 6 month span.

 

The first round left her ill, and with almost no answers for 7 weeks. Fevers around the clock, no appetite, and very sick. Until one day a final test revealed a fungal infection in her spleen. After diagnosed an intense antibiotic was introduced to eventually get rid of this fungus.

 

She was however in remission after the first round, which is the most favorable outcome, and stayed in remission for the duration.

 

She breezed through the next 3 rounds of chemo, each lasting up to an agonizing 10 days (some shorter) and then the effects thereafter. Each round leaving her weaker and weaker. Body more fatigued and weakened and more susceptible to infection.

 

After what we thought was the 4th agonizing final round, we were told that new research revealed that 15% of cases that didn't do the 5th round showed the cancer came back. So, after really having no choice, we opted to put our daughter through one more grueling round of chemo.

 

After a beautiful and relaxing 10 days at home we went back for the 5th round of chemo.  We were discharged after a 10 day stay, and after 4 hours (after an entire trip home to Oroville) she got sick with a fever and throwing up.  Any fevers after chemotherapy is an automatic ER visit. Cannot take any chances with such illness.  So we were admitted, and we didn't leave for 3 months.  A week or so after being readmitted, she got VERY sick.  Fevers spiked, nausea set in and she was taken to the PICU (Pediatric ICU). There, she continued to get worse and worse. Until eventually by end of the week she was intubated (placed into a medically induced coma).  It was touch and go. Doctors were extremely worried that she would die of heart failure.

 

Her body was ravaged with infection.  Infection in her lungs, heart, stomach and her brain.  An impromptu CT scan was ordered and revealed fluid on the brain.  It wasn't draining and emergency surgery had to be done in the middle of the night to place an external shunt to drain some fluids.

 

For 3 weeks she fought for her life in a coma.

 

She started showing signs of improvement day by day.  Tiny bits of improvement.  But it was touch and go. After 3 weeks it was determined that she was slowly getting better.  She needed to be woken up, while still being on a ventilator.   They slowly woke her up and began working with her.

 

5 weeks later (Father's Day!) she was extubated (taken off ventilator). What a glorious and happy day!  An answer to intense and powerful prayer.  She could not talk, or walk and didn't have a lot of movement, but she was alive! Another two weeks of intense rehab, she was talking, getting out of bed, using sign language, and communicating with us!  It was a true Miracle!

 

She was then transferred back down to the pediatric unit, where she was celebrated and cheered for.  It truly was a momentous, miraculous occasion. She was walking, talking and having an opinion.  Her memory was waning and she was very weak, but  she was getting better by the day!

 

For a few weeks, talk of placing a shunt had been discussed.  But we were all on pins and needles.  A week later her pupils were a 7MM difference.  It caused great alarm, something neurologically speaking had shifted.  By Wednesday that week a shunt was placed. Fluid started to drain, with help.

 

By July 19, her father's birthday, Avalynn was discharged from the hospital.  It was truly remarkable.   After a grueling 7 months of INTENSE treatment,  Avalynn was released, healthy and whole.

 

On August 14, she attended the first day of kindergarten!    Miracle of miracles!

 

Obviously, this journey has been one that one hopes, wishes and prays to never go on.   But having gone through this fire, it is one we would never change for the world.  We are all better people. We've seen the absolute best in humanity.  We've grown closer and become different than any other journey could do.  We are grateful for our life, our daughter's life, our family's endurance and closeness through this process.

 

 

 

 

© 2017 My Maleree Mae Foundation for childhood Brain Cancer - All Rights Reserved

 

My Maleree Mae / PO Box 1102 / Magalia, CA 95954

 

All donations made to the My Maleree Mae Foundation are tax deductible in the United States

 

 

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