On his 2nd birthday, AJ was diagnosed with brain cancer beginning a (hopefully long) lifelong battle against cancer. Learn more about the Hock family's fight against cancer at SaveTheCheeks.org.
We've started posting updates on AJ's fight against cancer at http://SaveTheCheeks.org where we've created a much better way to read the amazing stories of his tenacity, treatment, and energy.
[Be sure to visit our new website at SaveTheCheeks.org to learn more and see our blog updates.]
If you know AJ Hock, you've seen those big, squishy cheeks that just must be pinched and kissed.
In early September, AJ's mom MeiLani noticed that in addition to sporadic vomiting, while playing with his siblings, he kept falling over. Due to his constant laughter, she thought he was 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 done. On September 11th, 2014, AJ Hock was diagnosed with an aggressive ependymoma brain tumor, which was "urgently" removed on his 2nd birthday September 12th. Doctors said "sometimes a mother's intuition is more powerful than any medical degree."
After removing 99% of the tumor, doctors at Duke Medical Center notified the Hocks that AJ still had a long road ahead of him that would be their new way of life. AJ's diagnosis has a 60% success rate that AJ will live a full life. We hope and pray we are in that 60%, but know that the Lord has a plan for each of us and our families. 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.
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).
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 (every six months after completing this 7-week stay). 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). While their insurance is helping with the most severe medical expenses, they could still use the help.
According to our estimates, $20,000 will help provide the next year of AJ's treatment. If you are able, we would love your donation of any amount. Along with your faith and prayers, of course!
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Help us Save The Cheeks and we can all pinch and kiss the cheeks, for what we hope will be many years to come. On behalf of the Hock family, THANK YOU for your support, prayers, and love!
We've started posting updates on AJ's fight against cancer at our new website at http://SaveTheCheeks.org. Thanks to some volunteer help and mostly-free services, we've created a much better way to read the amazing stories of his tenacity, treatment, and energy.
Of course, you can still help us reach our campaign goal on #Fundly by donating as much or little as you want. Check it out: http://fundly.com/savethecheeks .
After people have asked how he is doing, then how we are doing, then they usually ask how the other kids are doing…. and that's usually when I start to cry. Every time. I'm not sure why. Not because they are suffering- but because that question leads me down a train of thought that is my kryptonite in all this.
The answer is they are doing great, amazing, better than could ever be expected. But that's because we have gotten good as parents ...at the art of distraction.
Houston is an extremely sensitive and tender-hearted kid. I've been worried about him through this. But he also believes me and Michael and definitely follows our lead. Whenever he sees a tear in my eye or a hint of "I'm so sad I have to leave you to go to FL again"- he gets worried. And Hadley follows whatever Houston does. So as long as Michael and I can keep good spirits- the kids are doing great. But because they are doing so great, and because we have to act like nothing is wrong with Houston and Hadley, that sometimes makes it harder. (side note: we understand there are different ways to help our 5 and 3 yr olds grieve- this is what works for us. To talk about it often in special setting where they can ask questions- but not to let them constantly see us worry a little or a lot).
Thanks to the help of my parents coming to stay with AJ in FL, I was able to return home to NC for 2 weeks (Oct 26-Nov 9). I found myself actually excited to do all these normal mommy tasks; cleaning up toys, doing laundry for a whole family, doing dishes, making dinner, changing diapers, even waking up for midnight newborn snuggles. I was also EXTREMELY excited to take the kids trick or treating, chaperone Houston's first field trip, to tuck the kids in bed, to talk to my sweetheart face to face while in bed- instead of while falling asleep with the phone to my ear, to be able to kiss my kids actual cheeks and not through an iPad on FaceTime. It was absolutely wonderful to be home again.
But every night came two very strong reminders that something was missing. That our home and family were incomplete. First- Dinnertime and second- talking to AJ on FaceTime for family prayers at night.
Each night while sitting at the table for dinner- whether it was while having the kids say their ups and downs of the day or while having the nightly "discussion" with Houston that "yes, he does have to at least try everything on his plate"- at some point I would recognize why it felt like something was missing... it wasn't the vegetables left in the microwave or the juice from the fridge... it was my son. The recognition of his absence would queue the first song on what I felt like was 2 weeks of my Real Life (mostly Les Mis) Score.
"Empty Chair at my dinner table
There's a grief that can't be spoken
There's a pain goes on and on"
I would usually just smile as I did my horrible vocal impression in my head of my least favorite song of the whole musical and although my heart ached for him, I would go back to life. I would brush it to the back of my mind as we geared up for the nighttime routine. I was able to focus on the other kids and forget that any of the cancer stuff was happening. When kids were washed, clean, ready for bed, we would try to FaceTime AJ for prayers- and then came the next reminder... yep... he is still not here. But so grateful that we at least get to see him with modern technology.
One night he had talked to each of the kids and us for a while. There were smiles and silliness exchanged through the iPad screen. Then Hunter made a squeak. I lowered the iPad to show AJ his baby 3 month old brother and AJ broke down in tears starting to cry and stubbornly insisting, "I HOLD Hunter! I HOLD MY HUNTER!" As I witnessed his strong desire to touch, hold and love his baby brother, just as I had before returning home-, tears came to me uncontrollably. I had to hand the iPad off to Michael to finish up.
Often these thoughts would eventually turn to thoughts that I dreaded, "what if this is our new normal? What is this becomes permanent?" A few nights my heart would sit aching trying to be strong as I continued cleaning or doing laundry until I would end up curled up on the floor, my mind now playing the next on my Les Mis real Life track in a plea to my Father in Heaven:
"You can take
You can give
Let him be
Let him live
Bring Him Home."
One night my husband found my laying on my closet floor and without saying a word, laid down right next to me to hold me as I cried. I ached to have all my family under one roof again. To feel that overwhelming love that comes from a family game of charades- when we are all laughing together. A Sunday walk where one is going that way and 3 the other. Night time family kisses. I found myself wishing each morning that the kids would all come wake us up… ALL... no matter what time! I just wanted them all to climb up, no matter what hour- just to remember what it feels like to be all together.
The last few days I was in NC I was able to take each Hadley and Houston on a date which I loved! Perfection…well almost! But I was very anxious to get back to AJ. I entertained myself with the continued Les Mis theme each day as I got closer to going to see AJ and would make up new lyrics depending on the day based off
"One day more! Another Day and more la-ah-undry..."
The day came for me to leave again. I made a video while Hadley and Houston were asleep of me going to try to wake them up with kisses so they would know how much I loved them and even if they couldn't feel it like when they were asleep- they would know I was sending kisses their way while I was gone.
I arrived in FL and we headed straight to a local LDS Sacrament Meeting. It was the primary program about Families are Forever. They did a wonderful job. I was so touched. I felt my spirit being rejuvenated through these children's testimonies. AJ was getting a little tired so he climbed into my lap and I held him and rocked him. You know the feeling you get from smelling the top of a baby's head? That's what I was feeling. The extreme love of holding my big baby boy. He seemed so long to me. Growing each day. And you wouldn't know it from looking at him- but there is a yucky tumor trying to destroy and push against his brain. I sat there pondering our family's phase of life right now. Not at all questioning, but wondering, "Why? Why this trial? Why our family?" That's when my favorite song of the program was sung- loud, clear, and with every ounce of conviction that these children had…and providing the next song in my Real Life Soundtrack- no longer Les Mis but instead the latest in the primary songs.
"God Gave us Families!!!
To Help us Become what He wants us to be!!!
This is how He shares His love-
For the family is of God"
(Song is called The Family is of God)
Again, tears came to my eyes as I recognized that I have a Father in Heaven that is trying to mold me into what He wants and needs me to be. He knows. I don't. He also knows, and I don't, what He needs AJ to be. The program soon after concluded, as my tears continued, with the last song on my Real Life Soundtrack- Families Can Be Together Forever.
"I have a family here on earth
They are so good to me.
I want to Share my life with them through ALL eternity!
Families Can Be Together Forever- Through Heavenly Father's Plan
I always want to be with my own family
and the Lord has shown me how I can"
I KNOW this to be true. My Father in Heaven loves me. He knows who He wants each of us to be. He gave us families to help us do so. I know that no matter what our path in God's plan is, we CAN be together forever! I know it!
So how are the other kids doing? Amazing. Hunter still has a bad cold so he can't come visit. Hadley thinks like revolves around preschool and playdates- aka perfection in her book. Houston does really well until someone says AJ then it dawns on him how much he misses him.
Thank you anyone who actually reads them. It forces me to sit down and right a journal entry of sorts, and I'm sure one day I will be so glad I did. Thanks for being my therapy session of the day :)
After people ask "how's radiation going" (see last blog post), the next question is often "how are you and Michael doing?"
The answer ... well...people don't believe me. I usually have to spend the next couple minutes convincing them. How do we feel… honestly? We feel so extremely blessed. You cannot walk these halls, hospital or RMH, looking at all of these amazing tiny heroes without feeling blessed! It is hard to think that out of the 30 patients here at the RMH, some of them are not going to make it more than a few more years. There are probably going to be more lives lost in this group of "hotel guests" than the Hilton down the block that has 100s of rooms. I guess that is a bit morbid. But it is true! Then we think that of this house full of beautiful bald heads and scared open hearts is AJ- spunky, playful, energetic AJ. His head still full of hair. No side effects that can't be explained by his new feeling of being spoiled as an apparent only child. :) I guess we will never know for years to come, are his tantrums or slow to learn times due to radiation, or was he always going to be like this? If it wasn't for the big 4 inch scar down the back of his head you wouldn't believe he was sick. We have called it the best of the worst. We feel so blessed that he is still our little boy. He isn't in a wheelchair. He isn't vomiting every night. He isn't in a hospital bed 24/7. Instead, he is running, playing, and living up life on Radiation Vacation. The next blog post will handle the deeper questions but for now... how do we feel- We feel we have been extremely blessed!
I've been having bad back aches and headaches which I have never had in the past. I had no idea where they were coming from. At adult Stake Conference the other day they had a panel on stress/anxiety/depression. As they were listing sign of stress they said back aches and head aches. I paused and thought, "hmmm, have I been stressed at all lately?" and then started to chuckle as I realized… I guess I have! I seriously don't even recognize it as stress because we feel so blessed and have had so much help that I don't feel stressed at all! I also attribute this much to the prayers of so many. I feel like it is helping us to constantly see the positive, to take each step of our day, to get us out of bed each day. It is your prayers and faith and love and service that is helping us get through this- almost stress free! :)
I feel like I have learned a lot about faith. I've solidified my knowledge that faith can bring miracles- but we should turn to Our Father to know how and when those miracles should occur. For the first month I felt hopeful but helpless. I felt like I had no control over the situation. Michael's faith comes in the form of miracles can happen if we pray hard enough and live right. Mine was a different kind. I felt like why would I ever want to question what the Lord has planned since I know He knows more than I do. I felt selfish if I was praying to let AJ stay on this earth for longer. Then of course there is the idea of What if he does live a long life and then goes astray? Then we will only have him for this earth life. I'm grateful that I married so well. I'm glad we have these two different, yet connected, views on faith. I'm glad Michael strengthens me to plead for a miracle, but I can then rely that I know the Lord knows what our future holds and where He needs us.
For me personally, I've learned that YES, The Lord is calling the shots- but we can ask for miracles and blessings in each step of the way. We had prayed to have us and the doctors know what to look for and that is what we have seen. I feel blessed and think it was a miracle that we got him in and diagnosed so "early" (even though the tumor was large, usually it won't get diagnosed until the tumor is blocking the spinal fluid path, and that wasn't happening with his yet) despite the first few doctors telling us it was probably just a virus. I feel blessed and think that it was a miracle that so many stumbling blocks came to postpone treatment which made us have another MRI to see that it had grown.I feel blessed and think it was a miracle that the drs continued to review the third MRI so that we could see that yes, the tumor was growing again and knew where to refocus the treatment. Each of these steps was an answer to prayer. Each was a miracle.
Thank you for your concern, service, love, and prayers. Please know that AJ is doing well. He is a champ! There are often times when Michael or I will be sad or crying and he will come and pet our faces or give us a hug. One of the first blessings he had in this said that he would be able to lift others as we went through this. It could not be more true! We cannot help but smile around this kid!
Please keep asking how we are doing. When our eyes look tired- we usually are. When it looks like we have been crying- we probably have. 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! Continue to pray for AJ, for the doctors, for Houston & Hadley (more to come on them in the next post) to be strong. We are grateful for all the help and love we have received.
…oh yeah… and pray for us too!
People keep asking how AJ's treatment is going. When I tell them he is doing well, they seem unsatisfied and want more details. I've realized they are really asking if the treatment is working. Believe me, I wish we had the answer to that one! Sadly, we have no idea.
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%. The difference between this radiation and others is instead of his radiation beams cutting everything in its path, it can decide exactly what depth of the radiation beam to hit the cancer. This way we are not damaging more parts of his brain and don't effect the brain stem where the remaining part of the tumor is. (The brain stem is what controls swallowing and breathing so we definitely don't want to hit that).
The purpose of the radiation is to poke holes in the cancerous cells (not just the remaining tumor, but all parts of the brain that were touched by the tumor because the tumor left behind cancerous cells wherever it touched).
When we found out that the tumor had grown a bit in the month since surgery, they recommended we go with the maximum allowed radiation- 33 treatments (we find out tomorrow hopefully if this is what the team of doctors have decided after 3 weeks of review). The reason they just don't give all the dosage in like a week is because they have to allow for the normal cells to heal every day, while (hopefully) poking holes in the bad cancerous cells. The hope and goal is that this continued radiation hole poking will prevent the blood flow from activating the tumor again.
The hard part is that we have no way of checking "how it is going". Yes, it is probably poking holes but we don't know how aggressive this little tumor beast is. Maybe we have killed it off already. Maybe it is a persistent little bugger 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. In January we will head for an MRI, then again 2-3 months later, then again, and again, and again. For the rest of his life we will be going for 1-4 MRIs per year to see if/when the tumor is active again. 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.
From what I understand, if we see in January that it has grown- that is really bad news because that means it activated fast even after all the ruckus we have tried to cause to it 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.
This is our 1 shot at radiation. The brain cannot handle another round. Chemo has a less than 20% success rate with Aj's type (ependymoma on the brain stem) of cancer. So each MRI will be a nervous one, especially for the first couple of years. We will ask for your continued prayers during these times.
We hope and pray that he will live a long healthy life- maybe even grow up to be an astronaut (like the plaster one pictured here that he loves at the Museum of Science and History here in Jacksonville) or the next great proton doctor. But for now, we just enjoy each day that we get to snuggle and hold him.
AJ's days have become a regular daily routine. Some people picture us in a hospital all day. Which is so not the case! We are on Radiation Vacation my friends! This post is going to be about what happens at our actual dr appts. Might be a bit long and boring- but this is what our mornings are...
We wake up and head to "Proton" M-F mornings. He is not allowed to eat or drink for 6 hours prior to radiation so we are grateful to have the early morning 7 o'clock hour appts usually since he is one of the youngest patients.
He of course rides his cool bike into the proton institute each morning. The wonderful elderly prostate patients always get a real kick out of him on his "hog". He heads straight in to the check in table to scan his own badge. Then hops on his bike to head back to the pediatric anesthesia room. He places his badge on his bed, which will later be used to confirm identity once he is in the radiation room. Off to choose a sticker to check off another day on his calendar that hangs on the wall.
After giving Nurse Gina a hug, he plays until it is time to get his "numbers" (vitals) and get his daily IV placed in his port. He knows that once he has his numbers done he has to stay on the bed so he likes to stock up on any toys he might need in the 10 minutes or so until he goes into radiation. His bed usually becomes a parking lot for cars and trains- just in case he needs that one extra car to play, although he usually ends up just playing the iPad but finds comfort in knowing the Cars are there as an option! The nurses and doctors continue to say what a good patient he is. He loves to take his own temperature, shine his own eyes, etc.
With his IV now hooked up to his port, he sits playing in his bed. The anesthesiology team wheels the last patient in then comes to give good morning high 5s to AJ before raising up his bed, turning on his gameday music (usually Life is a Highway), and heading into the radiaton gantry. 1 person gets to walk with the team of 3 anesthesiologists and AJ on his bed as we head to what we adults call the space ship. It is a very impressive machine that pictures can't do justice. They scan his badge and he loves to see his picture pop up on the screen and says, "AJ!" when it does.
The anesthesiologist start injecting his IV and as AJ tries to resist, the sleep always wins. As the syringe empties, his eyelids follow. Although it is never painful or dreaded, it is more like AJ likes to try to keep talking with his doctors for as long as he can. Yesterday he raised both of his hands in the air like Rocky and shouted like Tarzan "ahhhh-ahhhh" and then both arms fell with the eyelids and he was out. We all laughed at his desire to stay up and party.
I head back to the waiting room for 45 minutes. They place a molded mask on him to help get him into the exact same position EVERYday. The positioning takes quite a while and the actual radiation takes less than 5 minutes.
When he is back, they call me to come sit with him so I can be there when he wakes up. Some days he sleeps 10 minutes, some days an hour. Without a doubt, when he wakes up and says "iPad" like the whole thing was a dream and I just stole his iPad a second before. He eats his cheetos and apple juice to help him wake up and says hi to any of his new patient friends that have arrived since he went to sleep.
He usually wants to just stay and hang out but after an hour or so, it is time for someone else to come use his bed. I remind him that he gets a lollipop when we leave and that usually helps, but he is still usually pretty bummed to be leaving. I remind him that we will be right back there tomorrow again.
The whole process takes about 2-3 hours each day. Then we are free to go play. He is a little groggy and tipsy- but that does not stop us! We head to the Science museum, for a walk on the water, the zoo, the mall, or back home (Ronald McDonald House) to play with his other cancer "peeps" on the play ground or in the play room. And of course get him some food since we haven't eaten since dinner the night before.
We do our "chores" around the Ronald McDonald House. Do laundry. Read books. Play. Each night a volunteer group comes in and provides dinner. Sometimes we will go out for dinner for a change of scene, esp if it is the 3rd day of spaghetti- and mommy doesn't like spaghetti :)
Then off to bed with all of his new stuffed animal friends that have been sent to him by friends and loved ones from all over the world.
Good night and then start all over again the next day!
Thursday (October 23rd) was a hard day for me. Day 4 of radiation. The nurses called to tell me our appt had been pushed back by the doctors. My initial thought was, "AJ is not going to like that! Not eating or drinking until 4pm is a lot harder than 10 am!" but then I began to wonder why we were changing.
The doctor came in to meet with me while AJ was in radiation and explained that in further review of the MRI images taken Sept 13th compared to those taken October 14th, they noticed that it appeared that the tumor had grown in size which they had not caught in the original review. This just reaffirmed how aggressive this little tumor beast is! Even though its blood supply was supposed to be damaged for 6 weeks post surgery, this bad boy was already back in action within 4. Our doctor explained that this means that they are leaning towards recommending that we do 33 treatments instead of the initial 30 recommended. Although this will come at increased long term effects on AJ's little brain, I told them I supported the 33 because I would always want to know we did every thing we could to beat that little bugger! For those who haven't heard, this round of radiation is our best hope. Chemo is close to ineffective against his diagnosis and you can't do a 2nd round of this type of radiation.
After a week of walking the halls at the Ronald McDonald House thinking, "I'm so glad we don't have it as bad as them" I found myself now envying those that only had a diagnosis that called for 30 treatments. In talking with a wonderful family from South Africa that is doing radiation and chemo I said, "you poor things, I can't imagine how hard that must be to do them both simultaneously". The father's response was, "it is worth it, because they say this gives us more than a 90% success rate. I don't know what I would do if I was one of those families being told a 50-60% success rate!" I smiled as my lips curled into a a sad growling face and the kind father touched my hand and said, "oh, I'm soooo sorry!" It is moments like that I remember how real this is.
Despite the news and reminder of how aggressive his diagnosis is, somehow the sunset seemed more beautiful to me that night. My son's hugs felt like a piece of heaven. As he laid his little chubby hand on my cheek as tears ran down them, I felt uplifted. Thank you Thank you to all of those praying for us to have the Spirit to be with us. We have felt it. We continue to feel it. We are so grateful for each night that we get to kiss those wonderful cheeks and and wake up to that big smile.
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