As written by Trina Pierson
Our journey began almost one year ago in October of 2011. I was about 7 months pregnant, tired and stressed beyond belief. My husband David had been recently laid off from his job, and although I enjoyed my job, the financial burden being temporarily on my shoulders, coupled with the pregnancy was a bit much for me at the time. To make matters worse, my then 5 year old daughter Amaya had been exhibiting some behavioral issues that were causing us a bit of concern to put it lightly. For about 3 weeks she had been getting in trouble in school for sudden outbursts, not paying attention and what was described by her teacher as “not staying in her own space.” When we would ask Amaya why she was behaving this way, her response was always the same, “my brain told me to do it”. At home she had been having nightmares, dropping and bumping into things and was claiming to no longer know how to dress herself, among other things.
We originally just figured she was crying out for attention since there were so many new changes in her life (starting kindergarten, new baby on the way and possibly feeling our financial stress)so we began making an extra effort to make her feel loved and important. None of this seemed to help and in fact her symptoms only grew worse. My once polite and obedient little girl was now throwing tantrums, talking back and had seemed to take on a whole new personality. Although I had taken her to the doctor recently and everything had checked out ok, I made another a doctor’s appointment just to see if they could possibly figure out what the problem was. I was disappointed when I was told that she couldn’t be seen for another 2 weeks, because she technically wasn’t “sick”. In the meantime my family and I just continued to pray for God to reveal the root issue of the problem, but this was the beginning of a very long 2 weeks.
On October 14th I went in for my 34 week pregnancy check up and I was eventually told that my blood pressure had reached 199/122 and that I had developed a condition called pre eclampsia that can cause stroke and can also be fatal for the mother and child. I was immediately admitted into the hospital where they quickly induced my labor and loaded me up on what felt like a million drugs. After about 3 hours, 2 fainting episodes and an epidural that didn’t seem to take, my new baby girl Aria decided to pop out on her own (Thank God)! Weighing in at a little over 3 pounds, she was quickly taken to the NICU and because of my condition, I wasn’t able to see her in person again for 3 long days. Once we were told that she just needed to gain some weight and didn’t seem to have any physical or developmental issues , it was a huge relief for David and I.
I was kept in the hospital for another week following Aria’s birth and although my blood pressure was still pretty high, I was given some prescriptions and sent home to rest, leaving the baby behind in the NICU. Upon my return home I was shocked to find that Amaya was even more troubled and I no longer recognized this little girl. She had dark circles around her eyes from the lack of sleep caused by the nightmares and she seemed to be walking around as if she didn’t know where she was going. Her doctor’s appointment was in a few days and it couldn’t get here fast enough. The following day, my husband David took Amaya and my 2 step daughters with him to run some errands, so I could get some much needed rest. Within an hour he called me and said “We are on our way back, we have to take Amaya to the ER.” He proceeded to tell me that she seemed to have what looked like a small seizure and wouldn’t respond when spoken to.
We decided that it wouldn’t be a good idea to take all of the children with us, so I had my mother take Amaya and I to Children’s hospital. After several doctors tested her balance, coordination and motor skills, they could definitely tell that something wasn’t quite right and a decided to have a CT scan performed. When the doctor came to give us the results she sat down, held my hand and it felt like my heart had stopped beating …her words forever changed my life. She said that Amaya had a very large brain tumor on her brain stem and that because of it’s location, could not be operated on. I was in shock and denial and the impact of what she told me did not really sink in for days to come. I couldn’t believe this news and having both of my children in 2 different hospitals at the same time was almost too much to bear.
An emergency MRI was ordered and Amaya was admitted to the hospital that evening. Word had spread throughout the hospital that I also had a newborn in the NICU across town and one of the nurses was kind enough to request that little Aria, be transferred to Children’s hospital with Amaya. In the days to follow, Amaya was diagnosed with a rare type of brain cancer called DIPG (diffuse intrinsic pontine glioma) which had spread to the right side of her brain. We learned that it can affects behavior, motor skills, balance and vision among a lot of other things. I now understood what my child had been going through and I felt a great amount of guilt for not figuring this out sooner.
Our story became even more unbelievable when on October 24th(our wedding anniversary)I felt confused and dizzy, only to find out that my blood pressure had spiked and I was taken by ambulance, to the nearest hospital. I refused admittance to hospital and I decided to leave against doctor’s orders because I wanted to be near my children. When I returned to Amaya’s hospital room, I was greeted by journalists from our local newspaper, that subsequently wrote a story about our ordeal. That story landed us on the front page of the newspaper with the headline “When bad gets worse”. I was overwhelmed and exhausted but this newspaper article actually turned out to be a gift from God when it was all said and done.
A local woman by the name of Mary Knecht had read our story and reached out to me via email. The similarities of our stories were quite amazing. Not only was her daughter suffering from the same type of rare cancer as Amaya, her daughter’s name was Myah, the girls were only a year apart in age and they lived literally only 7 minutes away. I immediately loved Mary; she offered encouragement, support, advice and just an understanding that I couldn’t get from any other person. One of the things she encouraged us to do was to take Amaya to Memphis for treatment like she had done for her daughter. She also said she could get us in contact with an organization called Habitat for Hope that could possibly provide us with a home to in which to stay while we were in Memphis. Although free housing seemed too good to be true, I took the number from her and called Mark like she had instructed. I filled out the application online and after some consideration and prayer, David and I decided to take the chance and make the 11 hour road trip to Tennessee with a 3 week old preemie in tow. After getting registered, we met up with Tucker, Becky and Mr. and Mrs. Short at the apartments that would be our home for the next few months.
To our surprise, we were greeted with hugs AND food! I would have been happy with a couple of cots and a restroom, but the apartment was spacious, clean and had a crib for the baby. I remember choking back tears as I thought to myself “I can’t believe people like this still exist in the world”, their generosity was overwhelming. Over the next few days we met Diane Smith who brought us a welcome basket, prayed with us and really made us feel at home. We were unable to fit a lot of items for the baby in our vehicle for the trip to Memphis, so she even went the extra mile and had baby supplies donated to us so we didn’t go without. We also received home cooked meals from the volunteers as often as we needed, which under any other circumstance would not have happened, given the long and exhausting hours at the hospital.
As difficult as it was being so far away from home during the holidays, we were welcomed to the Short family’s Thanksgiving dinner where we were treated like one of their own. Our parents were even able to visit and not spend money on a hotel, because there was enough room in the apartment for all of us, which was a huge blessing. For Christmas the volunteers and staff surprised us with not only a tree and decorations while we were out, but gifts for the whole family. During the weeks leading up to Christmas, we had told Amaya that she had to wait until we returned home in January to get any presents, so the smile on her face was priceless when she woke up Christmas morning and saw all of the beautiful gifts waiting for her.
We came to Memphis expecting to maybe have a place to sleep, but what we got was an extended family through Habitat for Hope that genuinely cared and made the toughest time of our lives actually enjoyable and comfortable. We now return to Memphis every 8 weeks for follow up treatment s and lab work, but instead of dreading these trips, we eagerly look forward to them. These are our mini vacations where we get to spend time with Diane (who is now our close friend) and her family and occasionally hang out at the HFH House. Although Amaya initially responded well to treatment, we have definitely had a few bumps in the road, but I hate to think what this journey would have been like without Habitat for Hope’s love and support.