Avery's Journey

$7,383raised of $125,000 goal
5%

Organizer: Jaime Adams Beneficiary: Avery Ferguson

Avery's Journey: Faith, Strength, and Love ~ Her battle against #cancer #turnersyndrome

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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. 

Our Connection
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.
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Updates

Updates

12/19/2013
by Jaime Adams
All~

Requesting for prayers for little Avery.  She is not well and the doctors are running tests to try and diagnose what is wrong.  She went quite awhile without sleep, now she is sleeping constantly for long stretches of time.  She has no appetite, likely due to vomiting, so she is unable to eat to keep up her strength.  Will keep you updated once we learn more.

Blessings,
Jaime
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12/07/2013
by Jaime Adams
From Avery's mom (edited by JCA):

Good morning, everyone. I have been wanting to update for quite some time now. Avery is truly doing phenomenal after her heart procedure. Her recovery has been amazing and we are all adjusting to her new, higher, energy level. She's just such a great joy.

And that's where I want to stay. 

I don't want to think about the choices we need to make this December. I don't want to face her Oncology tests because things are going so well. I don't want to be negotiating crushing debts that are in are past but that may change our future. I don't want to spend more countless hours dealing with insurance, or no insurance.

I'd like to stay the mom of a happy, healthy five year old. It's a feeling Andy/I haven't felt in SO LONG. Three years to be exact.  I don't want to go back down the rabbit hole. Oncology and ACA are rabbit holes.  I haven't posted because I chose to take the time to enjoy Avery.  I will choose to enjoy Avery, focus on the amazing amount of love and support we are receiving from all over the country. And I'm going to bask in the sweet, Wake Forest, NC community who is lovingly donating and supporting a sassy little blond kid. 

Our neighbors, friends and strangers alike, as well as the best small business community around had just rallied around us. It's wonderful to watch people's reactions when they meet Avery. You sincerely would never know my child has ever suffered a day in her life because she just shakes it all off like nothing. She is so amazingly brave and it's really shaped her into a very determined, little person.

So that is what I will focus on as we face the unknown.  Thank you for your ongoing support, donations, prayers and love. Every single bit is having a great impact on us both financially and spiritually. 
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11/15/2013
by Jaime Adams
From Avery's Mom:

Hello, again. We continue to do well over on our end though, I admit, exhaustion is definitely setting in. All part of the recovery process.

I had trouble sleeping last night with so many different thoughts and emotions. The main one being I'll never forget when Avery's Endocrinologist wanted her to begin Human Growth Hormones at the age of two but her Oncologist wouldn't allow it. You never want to administer a drug that divides and multiplies cell when there might be active cancer cells in her body. I was distraught for weeks.

I felt it was so unfair for us to have to choose between Turner Syndrome protocol and Oncology protocol. They are both a part of my daughter and I feel every part of her important. Her Endocrinologist gently reminded me, "We are on a marathon, not a sprint."

His words could've have been more true. And while it's been a difficult and trying year, I don't want people to think for a second that we are using this site to abdicate responsibility for Avery's care. With Avery's PDA behind us we can focus on December's Oncology work. Stability is always the goal and the answers are never black/white. Avery's medical issues are a long journey--just like life.

It's taken us a while to settle into our circumstances as they are constantly changing. We are used to the bills and are committed to being in this for the long haul. I mean, isn't that what ANY parent does?

It's with that, I'd like to move the goal to $30,000 ending by year's end. It's not a sign of giving up, it's a sign of gratitude to those who have donated and have helped raise our spirits. 

I also want to reach that $30,000 goal. It's easier to make better medical decisions with some of the financial strain lifted. It will guarantee Avery's medical care through the end of 2014. It will give us the time to finish negotiations with the doctors and hospitals, purchase new insurance and/or a combination of both.

I really am so emotional. It helps when I remind myself that no parent ever really knows what lies in front of them. We all do our best, hope and pray that the steps we're taking are the best ones for our children. I know we are going to be OK. We have God as our provider while surrounded by family, friends and the best medical team around.

And thanks to this site, we've gained new friends, a larger community and experienced breathtaking generosity.

With love and gratitude, Shannon, Andy and Avery

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11/14/2013
by Jaime Adams
From Avery's Mom:

Surpringsly I didn't cry over yesterday's post after I re-read it. I probably should have after seeing all of the spelling and grammar errors…but I didn't :-). I claim sleep deprivation.


So what did I cry over? Continue reading to see....

Overall, yesterday I was emboldened. We got home from the hospital and, well...I was just happy. I was so happy to have the PDA repair behind us that I guess the adrenaline kept my emotions at bay. As the night wore on and Avery become more sore/wobbly/bruised and we were away from the safety of nurses/doctors a bit of anxiety crept in.

As well as vivid memories from hospitals' past. But tiredness prevailed and we all got a great night's rest.

This morning I began looking through more of my emails, FB posts and this site itself. It was emotional reading from current friends, long-lost friends and past co-workers. It made me miss all of them.

Then I saw more donations and notes from people whose names we never knew or whom we have never even met. Next there were gifts/notes/videos all with well wishes and all lifting our spirits.


So what put me over the edge into tears? Someone, or some group of someones, late this afternoon left $400 worth of Lowes Foods gift cards under our front porch mat. It was just too much for me. 

It wasn't necessarily the amount--though the amount is obviously generous. I think it's the realization of what people are really doing for us. People really do not want to see our daughter harmed. And they're trying to help. In any way possible.

It just made me cry. Everything happening here is just so nice. So inspiring.


So to all of you who are donating publicly, or anonymously, what you're doing is truly making a difference for us. From the bottom of our hearts we thank you.
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11/13/2013
by Jaime Adams

From Avery's Mom:

Hello! We are home from our heart proceudre and doing great. As funny as this may sound, compared to what we have been through these past three years these past few days have actually been pretty easy. Yes, it's a big deal anytime someone has any type of surgery, let alone heart, but the journey of getting has been exceptionally difficult. Much more difficult than a simple surgery and hospital stay. We are used to those!

However, we are beyond relieved to have closed this particular chapter in our lives.


I'm guessing I'll never be able to do an update post without ever saying how grateful I am to every single person who has taken the time to read our story and support us whether it be through a donation, a social share, kind thoughts or prayers. 

I distinctly remember last year a doctor friend asking why we hadn't done a fundraiser for Avery's medical costs. He was very aware of our circumstances and said he was approached all the time for situations "less severe" than ours. I said then what I'll say now--I was always afraid if we asked for help then what would we do if things got much worse? When you know you're struggling at what point should you ask for help?

Five years ago I would've said once you've hit rock bottom. Now, I realize rock bottom is overrated. And one only has to visit a Children's Oncology ward just ONCE to realize that there never really is a rock bottom as things could always get worse.

Further, I never wanted to compare our story to anyone else's. Your child, your family and your life is as equally important as our family's regardless of circumstances. Life isn't a contest over who has it better or worse. It's about connecting and sharing.

And I feel honored to share our story with you, and equally as honored that people have taken the time to connect with US. It has been wonderful hearing stories of survival throughout the most difficult of circumstances.

We are up to almost $4,000 in donations. I think it's important for us to clarify how we plan on using your donations.

$4,000 is almost two months of planned medical care. To realize two months of Avery's planned medical is taken care is such a great relief. It's amazing to have that worry lifted so we can focus our efforts elsewhere--primarily the what and how we are going to handle Avery's health care in 2014. 


We are in a very delicate place. As of now, as shocking as it is, our research indicates our insurance costs will actually be going up next year. That's because, while our deductible will be going down (to $11,000) all indications show our health care premiums will at the very least be doubling all while losing both vision and dental. 

I hope everyone realizes that having insurance does not, by itself, solve your healthcare issues. Insurance only matters as it relates to what is deemed a coverable expense.

For example, if Avery's December's Oncology reviews show chemo and radiation is suggested, insurance will cover it. However, our preferred treatment methods are not covered by insurance. In fact, I'd argue that what we're currently doing (out of pocket) has, in fact, has prevented any cells from metastasizing actually saving the insurance company money....but I digress.

If I'm wrong and the spots in her lungs grow, we will get more aggressive in our treatments but our preferred treatment methods will still not be covered by insurance.
If we were to ever change our minds and go the "accepted treatement" route then having insurance will pay off economically.

Avery also has Turner Syndrome. Accepted protocol for a TS child once they fall off of the growth chart is to begin the use of Human Growth Hormones (Avery fell off the growth chart in 2010.) In 2012-2013 if we had been able to take HGH our insurance plan would've covered most of it. But, in the 2014 plans we're looking at HGHs have been moved to a Class 5 drug, with prior approval, restricted access and quantity limits. This year's quote for HGH from the TS Group and plan directors runs from $20,000-$30,000/year (cost depends on dose and frequency.)

That makes me nervous. I don't want to choose a plan, pay its price only to be denied a treatment my daughter her doctors feels she needs. 

We've been paying Affordable-Care-Act-type-like premium costs and deductibles for over two years. Having insurance is wonderful when $10,000 tests are ordered (needed or not!) but having insurance is not great when it doesn't pay for medicine or a procedure deemed necessary by a doctor yet unnecessary by the insurance bureaucracy. Then, it just becomes pointless.

From that perspective, our requests for donations have more to do with our future needs than it does our past. However, our past medical issues and bills are directly related to our inability to currently provide a stable environment for Avery. Further, Avery's medical issues simply put, aren't stable. 

I want you all to understand that your money will be placed in a financial trust environment for Avery's medical care. While the world is trying to blend everyone together and make us all fit into a perfect category covered by perfect insurance--we already know our family and the medical issues we face are outside of the definition of "normal" or "perfect." 

We began the site with the idea that a $1 or $5 donation from each visitor could create enough momentum to help meet our two year planned medical goal. Then the notes and donations started coming in. It's hard to put into words what happens when you see someone give so freely to a family in need.

I'll be posting more soon. I'm overwhelmed with hope and gratitude. Many thanks for such open hearts.


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11/12/2013
by Jaime Adams
11/12/2013, 12:30pm update

Avery did great. We are on our way to PACU where she'll remain sedated to keep her still for another 3 - 4 hours. Doctor said PDA was small. Inserted cardiac coil and successfully closed it! Praise God!!!! Will update again soon

11/12/2013 - Evening update
Hi everyone. Many thanks for all of the calls, emails, texts and prayers. Avery is doing great! We are in our room now and settling in for what we anticipate to be a completely uneventful night. Any complaining you might hear will be from the adults in the room with the sore backs and necks.

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11/11/2013
by Jaime Adams
Posted by Avery's Mom:

The site hasn't been live but for 24 hours and I'm already overwhelmed by the response. It has truly lifted our spirits to see so many people sharing our story. It's humbling--and wonderful!!-- to see people who have never even met Avery decide to help.

The notes that have come along with the donations are miraculous. We are N.O.T. alone. And we never have been. And there are people in this world willing to help and participate simply to help a family work through a difficult season in their lives.

I thank you for sharing your hearts, your donations and the beautiful stories of your loved ones.

In addition to the site, today's been a big day for us. We completed (and passed!) our final pre-op work for tomorrow's cardiac cath. A successful procedure tomorrow means we will have passed one of our biggest milestones. This is the surgery that "started it all." For it was back in October 2010 when we originally scheduled this only to suffer through the VCUG and ultrasound that led us to finding her tumor. Her following nephroctomy and treatments postponed this cardiac repair until just now!

We have scheduled and cancelled this procedure too many times to count. The roller coaster has been worse than (I believe) tomorrow will be.

Another favor of anyone reading this--if you know of anyone in the Pediatric medical field please let them know what they do truly makes a difference. While today is Veteran's Day and WITHOUT A DOUBT our Veteran's deserve our thanks, praise and support my heart was with those who serve sick children here in the United States.

We are experienced medical parents. We know the codes, we know the routine and we know the procedures. We don't need to be coddled. But, as the time ekes closer to the procedure and as more forms are signed and we begin to meet each person who will be with her tomorrow...you realize it is your child you are placing in their hands. And it is amazing that there are people who are willing to actually take on that responsibility.

I cannot believe the quality of individuals we have met at WakeMed, Duke and UNC. They are the most unique and special kind of person on earth. It is only with the greatest of skill and care can a person possible accept the responsibility for another person's child while still yielding to the parent.

Parents are experts when it comes to their children but they are not necessarily experts when it comes to medicine. There is such a delicate balance pediatric professionals walk. When you see a true pediatric talent, you know it immediately. They lead with love and grace.

And regardless of the good or bad that they have seen throughout their careers, they still manage to show up for each child they care for. And regardless of how much Avery's dad and I intellectually know about our daughter's medical issues, she's still our daughter.

And it's emotional to hand her over to someone else. Thank you to Avery's entire pediatric team. You all are amazing.

------I was going to end it there but I had to tell you all that Andy (Avery's dad) fell asleep in bed while trying to quite Avery down for the night. He started to snore. Avery shook him awake and said, "Daddy you are welcome to stay but only if you quiet down."

See...that's my kid!!!
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11/11/2013
by Jaime Adams
Avery had her pre-op tests today, she goes in for her PDA heart surgery in the morning (November 11), please keep her and her family in your prayers for a quick, complication free, surgery followed by a swift, complication free, recovery!!!
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11/10/2013
by Jaime Adams
Hello. My name is Shannon and I am Avery's mom. I wanted to take a moment and thank Jaime personally for putting this site together. She walked into our lives precisely as God had planned. She came at a time when we truly needed the help, and hope.

When you're the parent of a child with health issues there is always a delicate line you walk. I don't like sharing Avery's full story as I worry it gives the disease power. However, as anyone who has every loved a child will realize, speaking about that love is one of the greatest joys! You can't speak of Avery without mentioning the struggles this precious, sweet child has faced everyday of her life.

My daughter is such a world of love and joy. Anyone who meets her, loves her. And anyone who knows her is always asking how they might be able to help.

The truth is, we've been helped throughout Avery's entire journey--through God, faith and by countless family, friends and (quite truthfully) the most amazing medical team. We are grateful to each and every person who has prayed for us, who has helped us and who we know will continue throughout Avery's entire life.

I thank you for considering joining in the community that has surrounded themselves around our family as a powerful force in helping keep Avery happy, healthy and safe.

With much love and gratitude,

Shannon (and Andy!)
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