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"For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison..." 2 Corinthians 4:17
Thank you for taking time to read Avery’s journey. My name is Jaime Adams and I met Avery in October 2013. Avery touched my heart the day I met her and since then I have volunteered to help Avery and her family. I hope her journey touches your heart as it did mine.
Avery’s good friend and nanny, Dayna, organized a sale to raise money for Avery’s upcoming surgery. I went to the yard sale and met Avery. As I was leaving, Avery ran up to me with a basket of blocks and told me to take them home to my little girl. I said, “Victoria isn’t here yet, she is still in my belly". Avery, only 5 years old, didn’t quite understand how Victoria could be in my belly. She asked inquisitively, “Victoria is in your belly?” and I replied, “yes, she is still growing and will come out to meet us in February”. I could tell Avery was thinking long and hard and was trying to figure out how this was possible. Avery then looked up at me and asked, “Can I touch your belly?” My heart instantly melted. Avery was the first person to ask to touch my belly.
Just a week prior my good friend, Jennifer Smith, completed her journey to Heaven after having battled cancer for over 6 years. Losing Jen was harder than I ever thought it would be. Then, a week later, I met Avery. During Avery’s short 5 years she has battled the effects of Turner syndrome and has been diagnosed with cancer (Wilms tumor), Patent ductus arteriosus (PDA, a congenital heart defect), and horseshoe kidney (kidneys never separated). I knew about Avery’s battle with cancer before going to the yard sale and having just lost Jen it was a very special moment when Avery asked to touch my belly. From that day forward, I have felt God’s hand guiding me to help Avery.
The Financial Situation
Shannon and Andy opted to bring Avery into this world not knowing the struggles they would face. For several years, the family has struggled financially. Shannon and Andy have faced overwhelming medical bills and other associated medical expenses and are faced with difficult choices between providing roof or paying past and future medical bills. The family is struggling to keep their head above water, with more medical expenses – known and unknown – on the horizon.
If your heart calls you to assist financially, this website will allow you to do so. We hope and pray that enough donations are received to 1) build a reserve to pay for future medical expenses with the assumption of no health insurance in 2014 and beyond, 2) place the family in a position to keep their house, and 3) place the family in a position to negotiate payment of historical expenses.
If you are interested in making a donation by check, please make the check out to Avery Ferguson and mail to: 14017 Wallberman Drive, Wake Forest, North Carolina, 27587
If you wish to make a donation online, you can do so through this website.
~~~ Avery's Journey ~~~
Avery’s Journey – Conception to Birth
Avery was born on September 1, 2008. This 6-pound bundle of joy and light, entered the world and was lovingly embraced by her mom and dad, Shannon and Andy. Unbeknownst to many, Avery’s difficult journey had begun 40 weeks prior. At 14 weeks gestational, Avery’s parents were told that an ultrasound revealed a perinatal cystic hygroma, a cyst-like cavity on the neck containing fluid. While cystic hydromas are benign, approximately 60% of cystic hygromas result from chromosome abnormalities. After further tests, Avery was diagnosed while in utero as having Turner syndrome (turnersyndrome.org). Avery is a 45x, missing 100% of the 46th chromosome. First and second opinions from two major North Carolina medical facilities, advised Shannon and Andy that they should abort by 20 weeks. Shannon and Andy decided that abortion was not an option. They wanted to learn more so that they could prepare as much as possible. They believed and still do that God is in control and asked for God’s will to be done.
Avery was born at 38 weeks after a relatively smooth pregnancy. At birth, Avery was checked for any cardiac issues, common with Turner Syndrome. It was discovered that Avery did indeed have a congenital heart defect, patent ductus arteriosus (PDA). With PDA, abnormal blood flow occurs between two of the major arteries connected to the heart. These arteries are the aorta and the pulmonary artery. Before birth, these arteries are connected by a blood vessel called the ductus arteriosus. This blood vessel is a vital part of fetal blood circulation. Within minutes or up to a few days after birth, the ductus arteriosus closes. This change is normal in newborns. In some babies, however, the ductus arteriosus remains open (patent). The opening allows oxygen-rich blood from the aorta to mix with oxygen-poor blood from the pulmonary artery. This can strain the heart and increase blood pressure in the lung arteries (Source: NIH.gov). With three major arteries in operation, PDA patients only receive 66% of normal oxygen delivery to their blood/lungs. It is an elective procedure to close the third artery, but without correction her physical activity would be forever limited because too much aerobic activity would stress her heart.
Avery’s parents agreed to an EKG and ultrasound every 6 weeks. At 6 weeks Avery had a renal ultrasound and was diagnosed with a horseshoe kidney, her kidneys never separated while in utero. While not ideal, humans can live with the condition. For the first 6 months of her life, Avery spent a lot of time in and out of hospital facilities. There were numerous other issues suspected which led to more testing but thankfully nothing was ever diagnosed. At 6 months, Shannon and Andy called a halt to the testing. While trying to ensure the best medical care for their child, they wanted their child to enjoy and experience life – and not be subjected to continued emotional and physical traumatic testing for “suspected” conditions. The doctors pushed to have Avery’s kidney thoroughly examined at age 1 and Shannon and Andy said they would think about it. They just wanted their baby home and for the testing to stop.
Avery’s Journey: Years 1-2
Avery celebrated her first and second birthdays with laughter and smiles. In the spring of 2009, doctors again began to push to have her kidney examined and her parents said no, there was no physical evidence of anything wrong so they chose to delay and not subject their child to more testing. Avery’s parents decided to schedule the surgery to fix her PDA in October 2010. At a little over 2 years old, they sensed that it would be good to complete the surgery before she would have permanent memory. In March 2010, Avery’s growth had fallen off the charts, a condition typical of Turner syndrome, so they agreed to begin growth hormones after her PDA surgery.
Unfortunately, Avery began to have complications before October 2010. In August and September 2010 Avery had her first and second bladder infections – the first signs of something possibly wrong with her kidneys. After treatment of the infections, Avery did not like hospitals. Following the infections, Avery’s doctors wanted to conduct a voiding cystourethrogram (VCUG) often given to children who have recurrent urinary tract infections to determine the risk of subsequent infections causing potentially damaging kidney infections and diagnose whether kidney reflux existed. The test is very invasive, especially for a two year old. As a compromise, Shannon and Andy agreed to an ultrasound and if following the ultrasound the doctor saw something he did not like, they would proceed with the VCUG.
The results of the ultrasound revealed a large mass attached to Avery’s kidney, approximately the size of an orange. They proceeded next with the VCUG. This test was a traumatic experience for everyone. The test required Avery to be awake, catheterized, and fluid forced into bladder to examine urine movement in her system. It took 4 people to hold Avery, only 2 years old, to the examination table. The VCUG revealed no kidney reflux, so testing moved to further examination of the mass on Avery’s kidney.
Avery’s Journey: Years 2-3
A biopsy of the mass was scheduled for November 2010. This trip to the hospital was exceptionally traumatic for Avery. At that time, NPO (latin for “nothing by mouth”, fasting guidelines) for infants started the midnight the day of surgery. The reason this is important is that regardless of the kind of anesthesia you receive, anesthesia can place you at risk of aspiration: inhaling stomach contents into your lungs. Avery was scheduled for surgery at 3pm in the afternoon. Due to the scheduling of her CT scan and her operation the next day, she did not eat or drink for well over 15 hours. During this time Avery screamed and cried to the point of passing out several times. This resulted in difficulty incubating before surgery. As a direct result of Avery’s experience, the NPO/national fasting guidelines for infants was changed giving infants high priority for the first surgery appointments during the day, shortening the time without food or drink.
Because of the position of the mass and her kidney, doctors entered through her belly and removed all of her organs. During this examination, they also checked Avery’s ovaries and confirmed that she has streak ovaries – non-working – and will never be able to have kids of her own. The mass was successfully removed. The mass was sent for further testing at John Hopkins, National Institute of Health, and the Children’s Memorial Hospital in Chicago, Illinois. Avery spent over a week in the hospital, including surgery and recovery, before she finally went home. Avery recovered from surgery like a champ and in less than two weeks she back to being a typical 2 year old.
For the next few months they waited for official results from the Children’s Oncology Group (COG) at the Children’s Memorial Hospital. In January 2011, they received the official COG report. The mass was found with Wilms cancer at nephrogenic rest. The COG determined that it was “pre-cancer” because it had not metastasized, so the COG would only recommend the Wilms Protocol for further treatment. With Turner syndrome there is already a very high risk of cancer, especially ovarian. In February 2011, Avery’s parents chose to forgo chemo and radiation and agreed to a CT and MRI every 3 months.
Avery’s PDA surgery was rescheduled twice in 2011 following removal of the kidney cancer, each time she was sick right before surgery. During this time Avery was found to have nail dysplasia and edema, typical of Turner syndrome, basically ingrown toenails that would constantly get infected. During one of her MRIs in 2011, she had this condition corrected – a fortunate opportunity provided by being under anesthesia for an MRI. Avery continued with CTs and MRIs every 3 months and celebrated her 3rd birthday on September 9, 2011. She continued with tests every three months to monitor the site of where the mass was removed for the next year.
Avery’s Journey: Avery turns 4 years old
Avery turned 4 years old on September 1, 2012. Full of giggles, she was recovered from the surgery and regaining strength. PDA surgery was rescheduled for October 2012. Unfortunately again the surgery was delayed as she began to struggle with incessant croup attacks, which landed her back in ER three times in September and October 2012. During the October ER visit, she had a boil lanced and she was diagnosed with Methicillin-resistant Staphylococcus aureus (MRSA) is a bacterium responsible for several difficult-to-treat infections in humans (MRSA). Avery was prescribed antibiotics to kill MRSA.
When Shannon returned home with Avery, she was unable to go to the pharmacy so asked her neighbors to go. Avery spent the entire month of October 2012 very sick – vomiting, diarrhea and a high fever. Even after four visits to the pediatrician’s office, no one could figure out why she was sick. Shannon was advised to not take her off antibiotics, because even though she was sick that would not help her fight the MRSA. At the end of October Shannon decided to stop the antibiotics. Their neighbors stopped by to check on Avery, the same ones that had gone to the pharmacy to fill the prescription, and Shannon explained what had happened over the last month. It was then that the neighbors flagged information on the prescription label that seemed unusual to them. It was only then when the administrative mistake was discovered. The hospital had entered Avery’s weight in kilograms instead of pounds, effectively doubling the amount of prescription she should have been taking. This was why she had been sick. Luckily since Shannon had stopped the antibiotics, Avery had been 5 days without and was starting to recover.
Just a few days later, now November, Avery had another bladder infection. It was so bad that Avery was crying every time she would use the bathroom. So Shannon and Andy rushed her to a nearby urgent care for treatment. Upon arrival, Shannon explained the situation and the recent issue with the incorrect antibiotic prescription. Avery was then prescribed the correct dosage of antibiotic, a dose lesser than needed to kill the MRSA but enough to address the bladder infection. They rushed to fill the prescription and Avery took antibiotics in the pharmacy parking lot. They headed to dinner at a restaurant just a few miles down the road, were seated at a table, and Avery went into anaphylactic shock – her small body began thrashing about, her eyes were rolled to the top of her head, she was vomiting and could not hold her head up. Shannon and Andy rushed her to the nearest ER since they were very close. The ER that they took Avery to the same hospital that was responsible for the administrative error and they immediately realized what had happened – Avery had overdosed on antibiotics. Even though Shannon had taken Avery off the incorrect prescription almost a week prior, the reintroduction of the antibiotic to her system was more than her small four-year-old body could handle.
This trip to the hospital resulted in a three-night stay and included a severe staph burn on Avery’s body and a continued fever. While there she had another chest x-ray and ultrasound. Fortunately, there was no sign of the tumor on her kidney.
Avery’s Journey: 2013 ~ Avery turns 5 years old and her Journey continues…
Avery continued to suffer from croup in 2013. She went to an allergist and they could not figure out why her airway continued to close. The hospital eventually allowed Avery’s parents to administer steroid injections to administer during a croup attack to avoid trips to the hospital. Avery continued to be sick. She contracted the norovirus several times, she would have vomiting, diarrhea – healthy in 5 days then sick again. The doctors became concerned that she may have a bowel obstruction and requested an abdominal x-ray and her parents refused. Every time Avery has an x-ray she is pumped full of radiation and is already at a high risk for ovarian cancer due to Turner syndrome and felt that administering an x-ray would be counterproductive. A few days later she had a bowel movement and eventually got rid of the norovirus.
In June 2013, the results of a regularly scheduled CT scan found new spots in her lungs – bigger and in locations not previously detected. This recent CT was conducted with a new high definition machine as the hospital had just installed new equipment.
In July 2013, the doctors determined the spots in her lungs were too small to biopsy. The last week of July, for five days straight (Wed-Sun), Avery suffered again from vomiting and diarrhea. On Sunday of that week Avery slept for 24hrs straight and had not eaten since Friday. On Monday she woke up vomiting again, this time it was green – the sign of a bowel obstruction. Fearing the worst, Shannon raced Avery in to get an abdominal x-ray, luckily no bowel obstruction but again it was suspected that the norovirus was to blame. In August, Avery saw a pulmonologist, who confirmed no sign of asthma, confirmed the spots in her lungs but agreed that they were much to small for biopsy. While at the pulmonologist, they discovered that it appears that the roots of Avery’s toenails are growing back despite the surgery she had to remove them in 2011. Avery’s parents have agreed to chest x-rays and ultrasounds every six months, subjecting her to less radiation.
On September 1, 2013 Avery turned 5 years old. This month she had another MRSA infection and is on proper antibiotics to fight it. Her PDA surgery is rescheduled for November 12 and administration of growth hormones is pending completion of her PDA surgery. Although 5 years old Avery wears 24 month old clothing. She is indeed a little spitfire, so articulate and bright – and ALWAYS on the move (which makes her PDA surgery even more necessary). She still has the spots in her lungs; we hold our breath that each new test doesn’t reveal any change in the spots. Even if her PDA surgery is successful, she begins growth hormone treatment, her toenails are fixed, the spots in her lungs remain stable, the tumor on her kidney never returns ..… Avery still has a long road ahead of her with Turner syndrome.