Avery Liam’s Rare Cancer Journey

$8,953 of $60,000 goal

Raised by 128 people in 4 months
36184578_1547424909782143_r.jpeg36184578_1547424686231690_r.jpeg36184578_1547424753538475_r.jpeg36184578_1547424854869426_r.jpegAvery Liam was born September 3, 2014 in Seattle. He was born with an infectious smile and beautiful curls. It was love at first sight for his family and friends.

On December 20, 2018, Avery started to complain of severe stomach pain. We took him to several hospitals, urgent care clinics, and doctors. All diagnoses were constipation.

On January 7, 2019, the same day his grandpa passed away, we decided enough was enough and demanded several more thorough tests be administered. Unfortunately what we thought was at worst, appendicitis, celiac disease, or extreme constipation turned out to be much worse—a cancerous tumor the size of a fist was found in the middle of his abdomen.

Daddy and I looked at each other in utter shock, disbelief, and immense sadness as we had to ask the ER doctor over and over again if he could repeat himself. As our lives changed that very moment, we reached out to our extended circle as we prayed, cried uncontrollably, and continued to ask ourselves, why him?

Avery, while under an excruciating amount of pain, went in for an emergency biopsy surgery. That biopsy came back positive for cancer. A very rare form of pancreatic cancer—so rare that it affects only roughly 1 person out of 25 million individuals.

Monday, we check to see how far the disease has spread, as they have already found lymph nodes on his lungs that show signs of the disease. Nevertheless, we believe in God and know that our son will be saved from this rare cancer. Like his disease, he’s one in a million and we will continue to help him fight across this long and perilous journey.

We haven’t been through this process alone. The outpour of love, prayers, and physical support we received from family, friends, and even unknown spiritual brothers and sisters has been more than a huge blessing. We have messages of support from prayer warriors from all corners of the world.

As the last few days have passed, we have been frequently asked if we have a GoFundMe page set up for our son. Up to this point, we’ve tried to humble ourselves and face this journey as two parents and our son. We’ve also been reminded of the fact that Avery isn’t the only child undergoing a battle with cancer, so we have chosen not to make a spectacle over the situation.

Regardless of how we, as his parents feel, Avery is to embark upon an incredibly difficult and arduous journey. Due to the masses that Avery has accumulated and how aggressive they have become, we have started chemo. Avery will need several blood transfusions, and after a few rounds of chemotherapy, he will undergo major surgery and will most likely lose his liver.

As I sit here and write this, I’m in tears because we’re watching our sweet boy be asked to endure pain most people will never have to endure in one’s lifetime.

So as we set up this GoFundMe page, please do not feel obligated to donate monetarily. We need prayers from anyone and everyone out there willing to do so. We believe in the healing of God to help get Avery through this journey. However, any and all help would forever be appreciated. Any donation will go to support medical, travel, meals, or any other form of unexpected costs associated with Avery’s cancer diagnosis, treatment and long term care.

Whether you believe in the power of prayer or positive vibes, please keep this little one in your thoughts. Avery and his family need all the love and support so he can KICK CANCERS BUTT!!

Thank you for taking time to read about Avery’s journey! And continue to please keep him in your prayers or if you have a prayer circle and can mention his story, please help us continue to spiritually fight for him. 
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We apologize for not updating everyone sooner. Christian and I have been trying to take in all of the information we were given, while trying to make the best decision for our son’s future. It hasn’t been an easy process for us. Just three months ago, we were told our son had an extremely rare cancer, pancreatoblastoma, and that his prognosis was relatively good as long as they could complete this surgery. What was suppose to be an 12-16+ hour resection of the tumor and disease, instead turned into 5 hour exploratory surgery because the disease had progressed further than they anticipated based on scans. He has live disease in multiple nodules around his abdomen, and his entire pancreas is infiltrated with disease. As we meditate this morning, we know that hope isn’t lost. We will most likely be starting a chemo regimen that helped save another 4 year old from the same cancer Avery has before his respective surgery. Since initial and subsequent CT/MRI/PET scans didn’t show Avery’s complete pancreas as being involved, they didn’t want to have him go though such intensive chemotherapy. Instead, this will be the next phase in an attempt to save his life. Although the metastatic sites may be cured with this chemo regiment, Avery will lose his pancreas, resulting in him becoming a Type 1 diabetic and never being able to consume food in the same manner again, due to supplemental enzymes to help digest his food. This has been an intense amount of life-altering information thrown at us within the last 24 hours, so we’ve found it difficult to function, let alone cope. The biggest silver lining we can find is that our little boy’s survivorship and strength gives us hope that he will eventually win this battle, and we will continue to hold on to God’s promise that any miracles are in His hands. We humbly ask that anyone and everyone continue to pray for our family and for Avery. We cannot imagine a world without his smile.
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To everyone who has been following Avery’s story and providing the many prayers and support, we truly thank you.

We waited a little longer for this update as we wanted to share some news regarding how Avery has responded following his third round of chemo, and share an update regarding the state of Avery’s cancer diagnosis.

As mentioned previously, Avery dropped a significant amount of weight following the first round of chemo—roughly 15% of his normal body weight. During the following 3 weeks, we struggled to get him back to normal weight through an aggressive daily regimen of diet and medicine. After the second round, he responded better and lost only 5% of his body weight. We kept working daily—sometimes making 4 or 5 different things at mealtime just to align with his ever-changing appetite. Going into the 3rd round Avery actually gained a full pound of body weight!

During last weekend, as we were receiving his chemotherapy, Avery was actually able to stomach three full meals—a huge improvement over his previous two rounds. After we were discharged, Avery experienced a bit of intermittent nausea Monday morning, but has since continued to eat. During this last week, he has been able to eat virtually everything we’ve fed him. During our first follow-up appointment, Avery was able to completely maintain his weight post-chemo!

We have been incredibly optimistic with how Avery’s body has responded to the chemotherapy. Our optimism was definitely supported when we got his most recent CT scan results back. Avery, at diagnosis, had a primary mass stemming from his pancreas and extending to the liver that was roughly 56 cubic centimeters. After two rounds, this mass shrunk down to about 27 cubic centimeters—a 50% reduction in size! Avery also had an additional mass in his peritoneum, albeit much smaller, measuring at around 4 cubic centimeters. This mass has shrunk to just over 1 cubic centimeter, a 70% reduction! There were also some additional deposits in his peritoneal lining that have completed resolved (no cancer)! Avery does, however, still have some nodes still near his heart, lungs, and through his abdomen that are still there. These have shrunk in size, but are still present. This has given us at least some hope that Avery’s body is responding well to the combination of chemotherapy drugs he’s receiving.

While this has been wonderful news, it doesn’t come without its trade-offs. Avery recently had an echocardiogram to measure his heart’s response to doxorubicin (highly cardiotoxic). His left ventricle is starting to show signs of dilation, or cardiomyopathy. While it’s possible this could potentially resolve itself in the future as his body is still growing, there is a very high mortality rate from doxorubicin-induced cardiomyopathy—roughly 50%.
We continue to pray that while Avery’s cancer shrinks, the long-term effects of the chemotherapy are minimized.

In addition to all of this information, we now have a clearer picture of what Avery’s upcoming surgery is going to look like. Avery will most likely under a roughly 10-12 hour surgery in about a month’s time (April 15th). This will most likely involve a Whipple procedure, where Avery may lose a large chunk of his pancreas during the process. Depending on how well the chemo continues to work on his liver, he may be looking at removal of ~25%-50% up to losing the entire organ. The area that the cancer has spread to in his liver (porta hepatis) is located near all of his connective blood vessels and where bile helps drain out to filter Avery’s digestive system. Not only is the surgery incredibly extensive, this will be an intensive recovery process and will result in Avery in intensive care for a range of a couple weeks to upwards of a month depending on how his body responds.

While we understand this is a lot of information, we hope that anyone still following Avery’s can continue to share his story and get as much info out as possible. We truly appreciate the time and support everyone has put in to help support our situation. We cannot express our gratitude for the countless prayers and offerings of support to our family. We are confident that everything is in God’s hands at this point and we will continue to fight with every breath to help kick cancer’s butt!!
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Thank you for everyone’s continued love and support for Avery. Here’s another update:

Today, we undergo a second round of chemo. We had a bit of a scare as Avery didn’t eat much (if at all) for the first 5 days following the last round. Regardless, we’re so close to gaining back the 5 pounds Avery lost following his initial hospitalization. He’s had a large appetite the last week, but we’re hopeful that he’ll continue to respond well to his chemotherapy and (now) 14 different oral medications.

We also had a scare with a bout of flu attacking the household this past week. Christian (dad) came down suddenly with the flu after a grocery store run for the family. Thankfully, he quarantined himself off for the better part of the last week and will be joining Avery during this weekend’s hospital stay!

Some hopeful news is that Avery’s most recent lab work came back yesterday, and his tumor marker, AFP (alpha-fetoprotein), dropped significantly from the ~14,000+ down to ~2300. We’re cautiously optimistic as this number is still very high (normal range of 0-20ng/mL), but as the journey continues, we’re praying that Avery keeps responding well to his chemotherapy.

Avery has been battling the disease with a great attitude, but some side effects have taken hold. Sadly, his beautiful curls are starting to thin out/disappear. He’s shed about 30% of his hair away within the last week alone. Hair loss and some intermittent nausea aside, the largest scare we’re continuing to monitor are the initial signs of hearing loss Avery began exhibiting over the last two weeks. He’s complained of an intermittent ringing in his ears (initial sign of high frequency hearing loss)—we will continue to hope this subsides. Hearing loss is, sadly, a very common side effect of one of his chemotherapy agents, Cisplatin. Unfortunately, there aren’t many clinical options for fixes, so we’ll continue to do whatever we can to monitor and hope Avery’s body battles everything accordingly.

We hope you all will continue to pray for Avery’s speedy recovery, but we cannot thank everyone enough for all of the support and generosity towards Avery and our family. We’re continuing to take this journey one day at a time and we deeply thank each and every person out there for helping pray, donate, or support in any way toward our child’s battle with such a horrible disease. God bless!
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We just wanted to provide everyone an update regarding Avery’s diagnosis. We knew what type of cancer we are battling—Pancreatoblastoma. However, we didn’t know the full extent of how much or how far the disease had spread. Unfortunately, after receiving PET scan results, we can confirm that the cancer has spread from his pancreas, to his liver, and metastasized to multiple lymph nodes throughout his abdomen and his lungs. We are confident that God will continue to bless Avery and continue to help see him through his recovery. We encourage everyone to continue to praying for our little man. We truly and genuinely appreciate all of the support and love we’ve received from friends, family, the extended friends and family we’ve yet to meet, and any prayer warriors alike.

Now that we have a clearer picture as to the extent of Avery’s illness and condition, we’ve updated our goal. This will be based on the costs we will be incurring over the next six months during his treatment. Avery will undergo at least one or two additional rounds of chemotherapy (doxorubicin and cisplatin) during which he will be hospitalized, prior to a major surgery. The primary goal of this surgery will be to remove as much of the cancerous mass as possible, but due to metastasis, Avery may lose a large portion, if not all, of his liver. If the latter were to happen, he will need a liver transplant for his long-term prognosis. We realize this is a lofty goal to reach, but with limited resources and around the clock care Avery requires, we will both be needing to step away from our professions (at least temporarily) to help care for our son.

We cannot thank everyone enough for the continued support and prayers. We hope to be fully recovered soon so we can help other families that are dealing with journies like our own. We realize how life-changing these events are, but we hope Avery and every child or adult battling illness comes out stronger on the other side.

Thank you and God Bless.
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Raised by 128 people in 4 months
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