Frequently Asked Questions

When your child is diagnosed with cancer, people shower you with love, service, and… questions.

We find ourselves having the same conversation multiple times each day with different people. We don’t mean to sound rude; we are so grateful to have people who love us and what to know about our fight against cancer. It is very supportive to have people that care, so we love sharing our story.

Please don’t feel like you should stop asking questions… ASK AWAY! But, since you’re here… We’ve answered a few of the most common questions below. If we’ve missed a question, leave it in a comment at the bottom of the page.

Types of Questions

How’s it going?of Page

Q: How’s it going? (aka, Is the cancer gone yet?)

AJ still has a brain tumor, even though his outward health appears relatively well.

No matter what your life is like, when somebody asks you how things are going, it is hard to decipher just how much honesty and detail they are seeking. When life is hitting you hard, it is impossible to answer both honestly and succinctly. We answer by telling them that AJ is doing well. If they seem unsatisfied and want more details, we slowly release the floodgates until they say, “¡No Más!

For now, AJ appears relatively healthy. He has healed very well from his September 12 surgery where the doctors removed 99.7% of the mass of AJ’s ependymoma brain tumor. He is currently undergoing six weeks of proton therapy treatment and we have started to notice a few of the expected, short-term side effects (see details below).

As of now, we are grateful that AJ does not seem fragile. He still can run, wrestle, ride his bike and play ball. It is likely that his immune system is weakened from the proton therapy, recovering from surgery, and odd sleep patterns. That means he may be more susceptible to common diseases. But, if you are healthy and wash your hands, feel free to love on him as you normally would.

Q: How can you be so positive throughout this?

We are optimistic to begin with. We are blessed with the a surrounding network of love. But mostly, we have faith in Our Heavenly Father and know that our family will be together forever.

AJ is a joyful kid. All of our kids are. They bring us so much happiness and joy, that we can’t help but be positive. Plus, with all the love that is being sent in our direction, how could we not be positive? Yes, some days really suck. But for the most part, we try to focus on the personal and spiritual growth that we are experiencing through this trial.

Through our faith, we believe that God has a plan for us. The essence of God’s plan is beautifully simple… He wants us all to have joy and to become more like Him. It’s hard not to ask why God allows us to suffer so much. But we know that although God takes no pleasure in our suffering, these trials can bring us closer to Him and even make us stronger if we endure faithfully (2 Nephi 2:2, Revelation 3:19).

It’s comforting to know that God’s Son, Jesus Christ, suffered all things for us. He understands our pain and can help us through our trials. When we have faith in God and His plan, we can be assured that there’s a purpose to all that happens to you here on earth. Our time here is short compared to our eternal life.

And on those days when things get really tough, we watch this video and count our many blessings:

Let us know if there is a question you want us to answer
by leaving a comment at the
bottom of the page.

AJ’s diagnosisTop of Page

Q: What type of cancer does AJ have?

He has an ependymoma (or ependymal brain tumor).

Childhood ependymoma is a type of brain tumor that arises from the ependymal cells lining the ventricles (fluid-filled spaces) of the brain or the spinal cord central canal (fluid-filled space down the center).

Ependymomas are relatively rare tumors in adults, accounting for 2-3% of primary brain tumors. While ependymoma occurs more often in children than in adults, only 200 new cases of ependymoma are found in children and adults in the U.S. each year. Ependymomas are the third most common brain tumor in children. About 1 in 11 childhood brain tumors are ependymomas. About 30% of pediatric ependymomas are diagnosed in children younger than 3 years of age.

Did you know? Although cancer is rare in children, brain tumors are the most common type of childhood cancer other than leukemia and lymphoma.

Q: How did you and the doctors discover AJ has cancer?

Lani insisted on an MRI after AJ chose to chill at the beach rather than play.

Lani insisted on an MRI after AJ chose to chill at the beach rather than play.

An MRI insisted upon by MeiLani.

In early September, MeiLani noticed that in addition to sporadic vomiting, while playing with his siblings, AJ kept falling over. Due to his constant laughter, she at first thought he was merely being funny. After 20 minutes of noticing this, she stopped the other kids from running, and asked AJ to walk to her. With those big cheeks and beautiful smile, he tried to walk to her but was unable to. Instead of running to her arms, his veered sideways and only made it 2 steps. He fell and laughed like it was all a big joke, but MeiLani knew something was terribly wrong.

After being told by multiple doctors it was probably just a virus and there was no need to investigate further, mom and dad (MeiLani and Michael) insisted on having an MRI.

On the morning of September 11, MeiLani and Michael took AJ to get the MRI. When the technician came out, he handed her the telephone to speak with the doctor who he had called when he say the tumor come across the screen. The doctor said, “Sometimes a mother’s intuition is more powerful than any medical degree. We can admit you right now to our hospital here, but if it were my child, I would drive the 20 minutes to Duke Medical Center. I will call ahead and have them waiting when you arrive.”

Q: What immediate treatment did AJ have?

Brain surgery that removed 99.7% of the tumor.

AJ Hock - MRIThe most important treatment for an ependymoma is careful surgical removal, but radiation therapy is required after surgery to reduce the risk of recurrence.

AJ was admitted to Duke Medical Center on September 11 and diagnosed with an aggressive ependymoma brain tumor, which was “urgently” removed the next day (AJ’s 2nd birthday).

After removing 99% of the tumor, doctors at Duke Medical Center told the Hocks that AJ still had a long road ahead of him. Doctors referred him to the University of Florida Health Proton Therapy Institute in Jacksonville, Florida for 7 weeks of treatment using cutting edge science to give him the best shot at survival.

Q: What is AJ’s prognosis for the future?

The prognosis for cases like AJ’s is a 60% likelihood for living a full life.

We were told by one of his doctors that if this diagnosis would have happened 10 years ago, his success rate would be less than 10%. Thanks to this new form of radiation treatment, our success rate shoots up to closer to 60%. We hope and pray we are in that 60%, but we know that the Lord has a plan for each of us and our families.

Hospitals will be a major part of the Hock family for the rest of AJ’s life. They will travel to Jacksonville many times in the coming years. AJ will have MRI’s every 3 months, which are $7,000 each. AJ will need therapy due to the long term effects caused by the radiation (to what extent yet we do not know).

Let us know if there is a question you want us to answer
by leaving a comment at the
bottom of the page.

AJ’s treatmentTop of Page

Q: Why are you in Jacksonville for 2 months?

Because #GatorsFightCancer with Proton therapy.

Proton Therapy Centers Location Map and ListingsAJ’s doctors at Duke Medical Center felt he needed a very new type of cancer treatment that is only available at a dozen facilities in the United States.

The University of Florida Health Proton Therapy Institute is a world leader in pediatric proton therapy. Over the past few years, the team at “Florida Proton” has treated more pediatric patients than any other proton center in the United States. This means that their doctors have unparalleled experience with this very new type of treatment. To date, children and adolescent patients have traveled from 34 states, 17 countries, and 5 continents seeking the specialized expertise of the UF Health pediatric proton therapy team.

In addition to pediatric radiation oncologists, the team at UF Health Proton Therapy Institute is made up of a specialized pediatric anesthesiology team, a team of devoted pediatric radiation oncology nurses, a dedicated pediatric social worker, and a child life specialist each with years of experience working with children undergoing proton therapy. The professional technical staff who operate the proton gantries are skilled and comfortable treating young patients.

UF Proton - ufla_protonThe UF Health pediatric program is built on the recognition that successful pediatric care involves far more than high speed particles and advanced physics. Their programming includes behind-the-scenes pretreatment tours and age-appropriate videos and interactive iPad applications to help children feel more comfortable before their treatment, professional support through our full-time child life specialist, school advocacy, an adolescent and young adult program, and ongoing psychological assessment and supportive counseling provided by our pediatric social worker.

Moreover, they know pediatric tumors and cancer impact the whole family. Ninety percent of their families come from outside Jacksonville and therefore they devote generous attention to ensure that everyone, including parents and siblings, feels supported. In addition to the well-known resources available for families staying at the Ronald McDonald House, we host a regular Family Fun Night with dinner and programming for our pediatric patients and their families. Other coordinated special events include group trips to local community events, performances, sporting events, and local attractions.

Q: Why proton therapy?

Proton therapy most accurately targets cancer in children, which means less residual damage to the brain than caused by traditional radiation.

UF Proton - TreatmentTable

This machine shoots a laser into AJ’s brain every day.

Generally, cancer in children is treated with traditional radiation, chemotherapy, or surgery – or a combination of the three. And while traditional radiation can go a long way in defeating pediatric cancer, it can also result in harmful, long-term side effects for growing children. These risks include developmental delays, hormone deficiencies, effects on bone and muscle tissue, and hearing loss or damage to salivary glands.

Because protons can be precisely controlled, pediatric proton therapy is ideal for tumors located near growing tissues in the spinal cord and brain. Healthy tissues surrounding the pediatric cancer are spared from excess radiation, meaning physicians can deliver more potent doses of radiation directly to the child’s tumor.

Although treating cancer with a lower risk of long-term side effects is a priority for every patient, it’s especially important when treating cancer in children. When ependymomas occur in the fourth ventricle, proton therapy nearly eliminates radiation to the hormone and intellectual centers of the brain, as well as the middle ear, which occurs with even the most sophisticated conventional radiation therapy techniques. Avoiding even low doses to these important areas of the brain will reduce treatment effects on the child’s intelligence, memory, hearing, and hormone production.

Q: Is the proton radiation therapy working?

We won’t know if it is ‘working’ for quite some time.

Believe me, I wish we had the answer to that one! There is no way to check “how it is going.”

Hopefully, the proton therapy is poking holes in all the aggressive little tumor cells. Maybe we have killed them off already. Maybe they are persistent little buggers and no matter how many holes you poke in it, it is still going to find its way back to the tumor to grow. For now, all we can do is go to our daily treatments and wait.

Q: When will they know if the radiation worked?

Maybe in January 2015. Maybe never.

We pray that this playroom will be part of AJ's life for many years to come.

We pray that this playroom will be part of AJ’s life for many years to come.

In January, we will go back to Jacksonville for an MRI… then again 2-3 months later… then again, and again, and again. For the rest of AJ’s life, we will be going to Jacksonville for 1 to 4 MRIs per year to see if the tumor is growing. It is weird to find myself praying that we will have dozens and dozens of MRIs in our future because that means he will be around long enough to have lots. (We ignore the fact that each MRI costs over $7,000.)

We are hoping that the January MRI will show that the tumor has remained the same size (or maybe even decreased). If it has grown, that is really bad news because that means it grew quickly even after all the ruckus we have tried to cause to its environment with brain surgery and radiation – our best two forms of ammo! If we see it at the following scans, it is of course still bad, but at least gives us more time to act.

AJ will always have cancer. We just hope that we can stop it from aggressively growing inside his brain.

Q: What long-term side effects might AJ suffer from the proton therapy?

Too many; but it’s much less than with traditional radiation.

Because doctors can better control where proton therapy releases its highest concentration of energy, proton therapy is believed to be less damaging to healthy tissue and to have fewer side effects than traditional radiation therapy. Still, proton therapy does release some of its energy in healthy tissue. Proton therapy can cause side effects as the cancer cells die or when the energy from the proton beam damages healthy tissue.

Halfway through his proton treatment, AJ seems to be slightly experiencing some of the side effects, such as:

  • Fatigue
  • Irritability
  • Loss of appetite
  • Soreness around the part of your body being treated

We expect to, but have not yet experienced hair loss around the part of your body being treated

In addition to the side effects directly caused by the proton therapy, AJ will experience many side effects from the abnormal behavioral changes from getting treatment. For example, his body is becoming accustomed to taking an anesthesia-induced nap every morning. After proton therapy, he will be unable to take a nap on his own simply because his body is expecting a much deeper level of subconsciousness.

Let us know if there is a question you want us to answer
by leaving a comment at the
bottom of the page.

Life with cancerTop of Page

Q: How are MeiLani and Michael feeling?

Extremely blessed by God.

Yeah, there are bad days, but on most days, we truly feel extremely blessed. We walk the halls of these hospitals and the Ronald McDonald House without seeing somebody and see many tiny, amazing heroes. While our story is really dumpy, it’s not nearly the most tear-jerking. We’ve said our situation is the best of the worst, so we’re tying to spend our “radiation vacation”in Jacksonville brightening the day of those we meet.

Of course, having a two year old with cancer is rainbows and Popsicles. When our eyes look tired – it’s because we are. If it looks like we have been crying – we probably have. The stress is slightly impacting our health. MeiLani has bad backaches and headaches that she never had in the past. We had a discussion at church on stress/anxiety/depression and we’ve dealt with all of the above.

For the first month I felt hopeful, but helpless. I felt like I had no control over the situation. Now I see that we are learning so much about faith. We’ve solidified our knowledge that faith can bring miracles – but we turn to Our Father to know how and when those miracles may occur.

We feel blessed to think of the many small miracles with which we have been blessed thus far. It was a miracle that his symptoms appeared so early, which helped us him in and diagnosed earlier than normal. I feel blessed that so many obstacles forced us to postpone the proton therapy, which meant he needed another MRI. It is a blessing that the doctors continued to review the third MRI for many days to see that the tumor had grown back to 5mm, and knew where to refocus the treatment. Each of these steps was an answer to prayer. Each was a miracle.

MeiLani and Michael Hock are doing their best to manage living in two cities and caring for their sick boy, while also balancing responsibilities at work and parenting AJ’s three siblings (including Hunter who was born only two months before AJ’s diagnosis). In a recent blog post, MeiLani wrote about the impacts to her relationship with Michael, saying:

I am so lucky to go through this adventure with my best friend! We get to learn more about each other and our faith in the Lord every day! I’m glad Michael strengthens me to plead for a miracle, but that I can then rely upon my faith that the Lord knows what our future holds and where He needs us.

She also attributed their strength to those of you who are helping them”

We are grateful for all the help and love we have received. We attribute our strength to the prayers of so many. It gets us out of bed each morning and helps us to constantly see the positive. Your prayers, faith, love, and service are helping us get through this almost stress free! 🙂

Q: What is living in the Ronald McDonald House like?

Lani is preparing a blog post about our new home away from home.

Be prepared to feel compelled to buy McDonald hamburgers everyday to support this wonderful charity.

Q: How much longer will you be in Jacksonville, Florida?

We are hoping our last day is December 5, but…

The doctors have not made the final decision of when we will finish our treatment. It depends on a number of factors, only some of which are actually related to AJ’s health.

Let us know if there is a question you want us to answer
by leaving a comment at the
bottom of the page.

FamilyTop of Page

Q: How are the other kids handling it emotionally?

The answer is they are doing great, amazing, better than could ever be expected. But that’s because we have gotten good at the art of distraction.

My 11/16 blog post provides specific details on how the kids are responding, but for the most part, they are managing this like rock stars. Houston (5 years old), Hadley (3 years old), and Hunter (a newborn) are each handling the situation in their own way, but our fight against cancer is definitely impacting them in similar ways, such as:

  • They are grieving because their brother has brain cancer.
  • They are grieving because everybody dear to them is grieving or worried or crying or stressed out.
  • They miss their brother who lives in Florida now.
  • They miss their parents who either live in Florida now or are running through life just trying to stay afloat.
  • They miss having their individual time to be the center of their parents’ attention.

It certainly helps that we have had tons of support from friends and family caring for them and providing them with fund places to go. Those who are watching our other babies will always be angels to the Hock family.

Q: Who’s watching your other kids?

Anybody that volunteers.

Basically, we’re blessed with great sisters, parents, church members, and friends. Let us know if you would like to help us watch the kids.

Let us know if there is a question you want us to answer
by leaving a comment at the
bottom of the page.

How can I helpTop of Page

Q: How can I serve you?

Just do it. If you have thought of a way to serve us, chances are we need help in that way. Cancer hasn’t killed our spirits, but it stripped away our pride months ago.

This was such a popular question, we created a whole other page to answer it.

Q: How can I give you money?

{awkward reply} Um… the easiest way is to give us a check… or go here to do it online with a credit card.

From the Hock family:

It was very awkward and surprising to us when people started asking how they could give us money. We’ve been humbled greatly by the generosity of our family, friends, and even strangers the angels in our lives. At first, we declined financial help from people, but they found ways to give it to us anonymously. Amazingly, this began before we even knew just how great our need would grow.

Hospitals will be a major part of the Hock family for the rest of AJ’s life. They will travel to Jacksonville many times in the coming years. AJ will have MRIs every 3 months, which cost $7,000 each. AJ will need therapy due to the long term effects caused by the radiation (to what extent yet we do not know). While their insurance is helping with the most extreme medical expenses, they will still incur significant out-of-pocket expenses.

According to their estimates, the first year of treatment and travel will cost the Hock’s about $20,000. If you feel so inclined, they would humbly accept your donation. Along with your faith and prayers, of course!

Let us know if there is a question you want us to answer
by leaving a comment at the
bottom of the page.

WebsiteTop of Page

Q: How are you able to create and maintain this website?

We’re not… but we have great friends.

Amazingly, we are doing it with mostly-free services and design by volunteer.

Let us know if there is a question you want us to answer
by leaving a comment at the
bottom of the page.


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

%d bloggers like this: