So I wanted my next post to all you guys to be something that inspires you so I asked myself who inspires me? Without a second in delay, I automatically thought to myself “Sterling Avery!” You see Sterling is my hanai sister which some of you may not know what a Hanai Family means. In Hawaii a Hanai Family is not the family you were born into but the family you have chosen yourself. Several years before I came into the picture my Mommy lived in Hawaii on the Island of Maui. During the time she lived there she became best friends with my Auntie Laura & her daughter, Sterling Avery😘. She met them while she working as property manager at the place where they resided at the time. Mommy loved spending time with them & after work she would bring Sterling home with her & they’d stop to get ice cream or stop at the beach to let Sterling run around and play in the sand like all 3 year olds love to do. Since Mommy & Auntie Laura’s family both lived over on the mainland Mommy, Auntie Laura, & Sterling were all each other had & they did everything together all the time! They’d take Sterling shopping all the time or take her to whatever the big event going on like to the Carnival or the zoo. There lives were as normal as normal could be! But I think Auntie Laura can tell you better than myself so please take a moment and read this from Auntie Laura herself...
How do you even begin a story like this one… I guess the only way, is to begin, at the beginning.
Sterling Avery Miller was born September 9, 2009 at just 27 weeks of gestation and only 2 pounds. She came into this world a fighter, she was strong from the moment she arrived…… “remarkably strong” were the words the nurses used to describe her, and “SPUNKY”
I’m Laura, Sterling’s Mom, that was the happiest day of my life!! I spent 12-15 hours a day, every single day, the entire 3 months that she was in the Neonatal Intensive Care Unit. I sat by, reading through the little port hole in the incubator, singing, or just doing nothing at all…… you see, it’s always just been the two of us, and there was no way I could leave that hospital without her.
Sterling amazed everyone, as the days and weeks passed, test after test came back PERFECT. We left the NICU with a clean bill of health, she was small, but she had none of the common lingering health issues associated with such an early arrival. My little miracle! I decided then, that I wanted to raise her in Hawaii, with the sincere kindness and love that we call ALOHA. Now, a 4000 mile move isn’t accomplished overnight, but before she had her second birthday, we were living on Maui. I often tell people that she was born to be an island girl, from her preference of raw fish and papaya to her aversion to wearing shoes(and sometimes clothes), she loves it here! We were quickly blessed with amazing friends a great opportunities to work and go to school…. Life couldn’t get much better!
And then…..
In August of this year (2013) she began running a low grade fever that we couldn’t quite shake. Sterling’s grand entrance into the world has made me lean toward the cautious side when it comes to her health, most people wouldn’t take their child to the doctor for a fever of 99, but I did! Her doctor ordered blood tests done that same day and at midnight my phone rang with news from the lab that her hemoglobin was critically low and that I should be watching her to make sure she was breathing….. WHAT??? We went from a low grade fever to “my daughter could be having congestive heart failure” in roughly 7 hours. And this is how the nightmare begins!
The doctor’s believed she had Transient Erythroblastapenia of Childhood (TEC). We would monitor her closely, but normally these things correct themselves and she will be fine. To ere on the side of caution/reason, we were referred to a Hematologist/Oncologist at Kapiolani on Oahu. Since she wasn’t symptomatic, we were given an appointment a few weeks out, on September 20th. On September 19th I learned exactly what “symptomatic” meant!
Her legs were no longer able to hold her up and she was slurring her words. This was the first of many nights spent in the ER at Maui Memorial, we left the hospital with just enough time to catch the 6am flight to Oahu. By the time we arrived she couldn’t even walk herself off the airplane, I’ve never been so terrified in my life, it was as if I was watching the life drain right out of my baby girl and there was nothing I could do to help her. The only thing that gave me some comfort, was knowing that we would be to Kapiolani in meer minutes. By this time her hemoglobin was at 3.1, the first of two blood transfusions was started immediately. Just to put this in perspective…..a normal person would be given a blood transfusion if their hemoglobin dropped below 8. My little soldier girl was walking around playing, well into the 4 range and only got “symptomatic” in the low 3’s.
When your blood levels are that critically low, they have to transfuse the blood over an 8 hour period…… Slowly I watched the life coming back into her face and eyes, she felt good, her eyes were sparkling again! I can’t even describe the feeling I had watching her, like relief, but more profound!! That night we were admitted into the hospital because she needed a second transfusion (just to get her up to a safe level). We were discharged the following day and home we went! We could put this harrowing experience behind us, well that was the intention. Days passed, weeks passed, all her blood tests showed that she was indeed holding stable and that her bone marrow was making new cells…life began to return to normal……… for a while…..
October 18th, out of the blue, she spikes a fever to 104.5, this marks our second appearance at the Maui Memorial ER in as many months. She was given Tylenol, the fever came down and we were sent home. Our follow up with Kapiolani was in just 5 days, in no uncertain terms, I was told to control the fever with Tylenol and discuss it with her doctor at Kapiolani on our next follow up……. The next five days were even more terrifying than her legs giving out!!!
Tylenol only kept the fever down for a couple of hours, then it shot back to 103 and 104. I tried alternating with Ibuprofen every 3 hours, but nothing worked. She wouldn’t eat, she wouldn’t drink……all she wanted to do was sleep! As for me, I slept only twice in the next 5 days, and then only when I could get someone to stay awake watch over her. By the October 23rd, the day of our appointment on Oahu, we were unable to get on the flight we were both hysterical, her from fever and myself from sleep deprivation and fear. Finally, we were admitted to a room at Maui Memorial. Her little body was failing fast, she had to be stabilized before we could even be transported to Kapiolani.
She was immediately started on 3 high powered IV antibiotics because now, not only was her hemoglobin crashing…..she was losing the white blood cells too, and had practically no ability to fight off infection on her own. Before the night was through she would need another emergency blood transfusion.
Every blood test and culture they did to try and find out what was causing the raging fever, came back clean. Even with my then, very limited medical knowledge, I knew that a fever that high, of an “unknown origin”, is not something you want associated with your child. The following afternoon they felt like she was stable enough to transport and we were once again on the air ambulance. She looked so tiny on the stretcher, she just lay there in a little ball, whimpering in her sleep. It was the saddest thing I’ve ever seen. My heart breaks all over again, just thinking about how horrible she must have felt, and how helpless I was to comfort her.
First thing, they want to do a bone marrow aspiration. This is where they stick a needle into the back of the hip bone and pull out some of the bone marrow. This is…. the definitive test for cancer! Her biopsy showed that there was NO Cancer, no Leukemia or any other. She was tested for everything under the sun, every bacteria, every virus, every parasite… The only thing they could find, were trace amounts of the Ebstein Bar Virus(it causes Mono), this was a surprise to me because she hadn’t ever been sick. It was then determined that she had a “Viral Bone Marrow Suppression”, caused by the EB virus. EBV is very common (like 98% of adults carry it and 50% of children under the age of 5) and apparently in young children, the virus can be so mild, that it goes totally undetected.
Four days after the IV antibiotics were started, the fever began to subside, her white blood count still wasn’t great…… but we were able to go home for Halloween. We dressed up as Dorothy and the Wicked Witch of the West. I was totally scary and green, and she was the cutest Dorothy ever, we had so much fun, it was good to be home!
My baby felt good and a huge weight had been lifted, knowing that we didn’t have to worry about Cancer, the bone marrow suppression would self correct in time. Each Wednesday we flew back to Oahu, for a follow up with her hematologist. Each Wednesday her lab work showed improvement, not only was she keeping the blood she had been transfused, her bone marrow was indeed making blood cells again! Whew!! Since her blood counts had been stable, even improving for over a month, we stopped the weekly visits to Oahu, and continued monitoring her, with bi-weekly blood work on Maui. As of December 3rd, she was still holding stable…… we shopped and decorated for Christmas….. we talked about taking a trip back to the mainland after the new year to see Grandma and Poppy…… she was active and in good spirits, back to riding her bike outside and playing on the monkey bars.
One week later……. I noticed her energy level dropping, then the low grade fever started creeping in, then it started creeping up. On Dec.16th it spiked to 104 and we were back in the emergency room at Maui Memorial. Much to her credit, the ER doctor conceded that Sterling needed to be transported back to Kapiolani, and immediately began making the arrangements for the air ambulance. The doctors exact words to me were, “I’ve actually never seen lab work this bad, her bone marrow is shot.”
Somehow in the span of less than two weeks, she went from normal blood counts to, the worst this doctor had ever seen……It turns out that her ANC (the cells that fight off infection) were ZERO. I didn’t even know that was possible!!!
The next few days were a blur of blood transfusions, 3 different IV antibiotics, uncontrollable fever, reaching 105 one night, and another bone marrow aspiration….
Her doctors think it’s best to start over and look at everything again…. I agree with them!!
On December 19th, at ten minutes to 4pm…. a TEAM of doctors entered the hospital room. Everyone remained standing and silent…..except the Oncologist, who sat in a chair across from mine…. (you would think at this point, I would have had some clue), but it hit me like a brick to the face……
“Sterling has Acute Lymphoblastic Leukemia, we need to start chemotherapy tomorrow morning. At the same time, we need to pull out some of her spinal fluid, to make sure there is no cancer in the spinal column or brain.”…….silence……..silence….. all I can think to say is, “No, Didn’t we just rule this out in October?” It doesn’t really matter does it, she’s got it now!! And we don’t have time for the “Why’s”. This is all internal dialog by the way….
I’m still just sitting in silence, as her doctor tries his best to prepare me for what’s to come. Even though I’m trying desperately to listen, the word CANCER just keeps echoing in my mind….
They handed a HUGE binder with the words, “Children’s Oncology Group…… Childrens’s Cancer”. My baby is very sick, life threatening sick, and we must begin treatment immediately, if we are going to save her life!
Dear Lord, please give me strength!!
Not one tear can fall, there is no time for fear or sadness! If I am afraid, she will be afraid! If I am angry, she too will be angry! Whatever I feel, she will feel….. so I choose grateful! We are at a wonderful hospital, with an amazing team of doctors to care for her. This particular type of Leukemia, has one of the highest success rates of being fully cured, for her age group it’s over 90%. As bad as Leukemia is, it’s actually better than HLH, which was one of the other possible diagnoses.
The intensive chemotherapy started the following morning, you would think that having three different poisonous chemicals pumped into your body would make you feel worse……..but not our little soldier, she’s never played by anyone else’s rules..….
she feels great!!! Where chemo usually lowers your blood count, hers comes up. We watched movies, did crafts and enjoyed frequent “cruising” to the cafeteria to acquire extra snacks. Her body is handling the chemo remarkably well!
By Christmas Eve we are be able to move over to the Ronald McDonald House nearby, ………Santa found us there and left her the biggest bag of gifts I’ve ever seen on Christmas morning.
December 27th wasn’t remarkable at all, we’re scheduled at the hospital for her 8th day of chemo, her body is still handling the treatments very well.……… but, once again I failed to recognize the staging of life changing moment.….
Sterling is taken to the playroom by one of the nurses, and I find myself sitting in a small room across from yet another Oncologist…… all his words kind of blur together, until he gets to……………..“a mutation that makes it resistant to chemotherapy, it’s called
The Philadelphia Chromosome, Sterling tests positive…..this is very rare in children”
As I am to understand it, just 5 years ago a being Philadelphia Chromosome positive (Ph+), would rule out chemotherapy all together, the best chance of survival was a bone marrow transplant. Everything changed in that moment, she went from being “standard risk” to being the highest risk possible. Being Ph+ dropped the rate of survival from 90% to just 30%.
There are new medications that bring the survival rates back up for Ph+…… in adults. This condition is so rare in children, that they just haven’t been able to test it much.
The medication isn’t even available to the public, but they can give it too her as part of a clinical trial. This is her best chance at beating this, as a mother…if there is any shot at all, I must take it!
I pray that no one else ever has to hear these things about their child, but since I know someone will, I pray that our story, Sterling’s strength and courage, can be of some comfort to them!!
I wanted to stop here and I’ll follow up with another post telling everybody everything that has happened in Sterling Avery’s Life since these first post of her story! She’s such an inspiration to me and I just wanted to share her story to everybody out there..
Also for all donations to Sterling & Laura you can contribute to their GofundMe @ gf.me/u/gr26m8
Only 4% of Government goes to childhood cancer which is a shame.. Please take a moment to remember all the brave little children out there fighting for their lives & remember the ones who wasn’t as fortunate to win the battle..
Please make sure to Upvote this posting for all funds raised thru this will be going to Sterling Avery!
Please Stay tuned because I’ll be posting shortly the rest of Sterling’s story
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