A quiet hero

Many of you know us. Many of you know our family. Many of you have become part of our family. Thank you for sharing our journey through the trials of our lives.

For those of you who know us, might know my brother-in-law Mike. He is an amazing man. He’s a got a quick wit, quiet demeanor, respectful work ethic, and a pride for Canada and BYU Cougars. 🙂 I love this man a lot and am very grateful to call him my brother.

Last month Mike was diagnosed with Melanoma skin cancer and thus starting one of his worst nightmares… no not the cancer. I actually don’t think he is very worried about that almost at all. The nightmare I fear he is about to experience is all the attention that his cancer might attract. In fact, when being diagnosed, he waited about 8 hours before telling his wife and then told her not to tell anyone. (For anyone who knows my sweet sister Mitzi, knows this command is almost laughable. I am very proud of how she did. She lasted until the morning and then told my dad but nobody else).

He wanted to wait to find out more details about what it really was and how bad it is. We now know more, and since he still refuses to share, and although the “talking about it” ban has been lifted, his wife is not supposed to make a big deal out of it. So I will take it upon myself to share with those that he loves. He can’t ban me, I’m his sister. 🙂

In fact, I feel I have earned this right because I distinctly remember when my son was diagnosed with cancer and I didn’t want it to interrupt people’s lives, and I told Mike there was nothing he could do so stay home and work, he directly disobeyed me! Upon arriving at Duke after our diagnosis at Big Wake, Mike was there in front of the ER waiting for us. I remember thinking, “This must mean this is a big deal if Mike left the office despite my wishes, to come and sit at a hospital all day.” I was ready to tell him to get back in his car and go home, but just found myself crying and letting him hold me for a good minute instead. I love my big brother Mike. And whether he likes it or not, people want to know details.

Let’s start with respecting his wishes and letting everyone know “Mike is fine”.

We have great faith that Mike is in fact fine. He was diagnosed with Melanoma. They say it is a classic case of early detection and it is highly treatable.It had not even been assigned a stage is it so early. It is a matter of just scraping it off. His surgeon is VERY optimistic. It will be something they will have to monitor for the rest of his life. He will go in every 3 months to get checked to make sure nothing else is growing.

He will have to wear long sleeves and hats and sunblock every single day (including on a hot golf course) for the rest of his life no matter how sunny or cloudy. If you ever see him not following these rules, please out of respect to his wife and children of this stubborn man, please offer him a hat or sunblock 🙂

He is having surgery in January to remove the current cancerous portion.
Thanks for caring. And if you want to make Mike feel really awkward and squirm, please go up to him and give him a big hug and tell him how worried you are about him.
We will keep you posted if anything gets worse, but for now, we are counting our blessings and so grateful they were able to catch it so early! We love you Uncle Mike!

If you want to know the back story it is actually kind of funny. Mitzi came to tell my dad in tears. Dad kind of tuned out when he heard “cancer” trying to think of all the things this meant. Apparently Mitzi had shared that there was an 80% chance Mike would live 5 years. Then when dad let the beans slip to me it swapped to 20% chance Mike would live 5 years.

So I got in my car and headed over in tears to climb in bed and snuggle with my big brother for what I was worried was one of his last 5 years. He then told me the real story (not the game of telephone version) and was kind of like, “I’m not dying! But feel free to bring me pity peppermint shakes from Chik-fil-a if you are worried about me!”
The great news was that the first doctor was wrong and his surgeon says it is way higher than that and probably very close to 100% that this will not effect him as long as they monitor it.

 

 

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When our lightning struck

Michael and I were reflecting last night that it has been almost a year since AJ was diagnosed with Cancer (September 11, 2014). Wow how time flies! As Michael put AJ to sleep last night, we asked him if he remembered Gina, Cole, Luke, Aaron, Cooper, or any of the gang. None of it seemed to ring a bell. (Well, except the Ronald McDonald House but he has been calling every McDonald’s we have passed in the past year a Ronald McDonald House 🙂

As I watched this video today, I wept feeling so strongly that it was a miracle of God that OUR little AJ has not only survived, but is doing so well. I am grateful for the Lord and for the wonderful priesthood holders that were able to give our baby blessings when our lightning struck.

Thank you for the many worthy priesthood holders who were there when we needed them to give a blessing to AJ or to us to bring comfort. We have grown so much this past year and our grateful to each of you for helping us become who and where we are today.

3rd Scans: Greater news than we had even hoped

Dad helps AJ wake up from his third MRI since finishing proton therapy.

Dad helps AJ wake up from his third MRI check-up since he finished proton therapy.

Today was AJ’s third MRI scan since completing his proton therapy and the news was even greater than we hoped. After his second scan, we celebrated stability – where the tumor has remained the same size as before. (Remember, for many chronic cancers, stable disease is something to celebrate.)

Well today, AJ’s scans came back even better!

Not only did the tumor not show any signs of growth, but the doctors said that whatever evidence – if any – of it ever being there is gone. His brain is even starting to look like a perfect brain back in the correct position from where it was pushed by the tumor!

The doctors felt things were going so well that we can wait an extra month until his next scan! So, check back in early December, when we hope for another day of Thanksgiving.

We can’t quite say AJ is cancer free yet, but we can say that LIFE IS GREAT and for at least the next three four months, we will celebrate our boy’s miraculous progress! Thank you all for thinking and praying with us.

Celebrate the miracle of stability!

AJ in superman shirt

Our super little man!

When do you celebrate your child being sick with sinusitis? When you find out that’s what’s making him lethargic, as opposed to a growing brain tumor.

Today, AJ had his second three-month MRI to check on the status of his tumor… and the news is GREAT! His tumor is the same size as it was three months ago, when it was the same size as it was at the end of his proton therapy treatment.

Technically, AJ’s cancer is labeled as stable disease. With cancer, people usually focus on whether a tumor is shrinking (objective or partial response) or growing (progressive disease). We are terrified of a growing tumor and celebrate shrinking as ‘beating cancer,’ but for many chronic cancers, stable disease is something to celebrate.

We can’t say AJ is cancer free, but we can say that LIFE IS GREAT and for at least the next three months, we will celebrate the miracle of stability! The world is beautiful outside when there is stability inside.

Hoping for Contagious… not cancer. MRI on Monday

Many have been asking for an update on AJ so here it goes. He is sick. Really sick. Fort he past 3 weeks he has seemed off. He is doing much better this week but still seems out of it. He is walking slower. Sleeping more. Looking tired most of the time. Wants to be held always.

Camping on the beach for Father & Sons 4/24/15

Camping on the beach for Father & Sons 4/24/15

I put on a big fun event for a large group last Saturday. We have put it on 4 years in a row. This year, the preparations the night before were different. Usually I am busy worrying about the details of the event.  This time all I could think about on Friday night was how sick my baby AJ seemed to me. I cried a lot because everything he did reminded me of the week before he was

Swinging with Aunt Mit

Swinging with Aunt Mit

diagnosed. Slow footing, hint of tipsy, tired, wanting to play but his body was too weak, so instead I would just hold him as he watched others having fun. I felt like I was reliving it but this time we have already done what we were supposed to do to fix it.

Last Friday night, I snuck in to give him a kiss before I went to bed to prepare for my big day the following day and couldn’t leave. I just wanted to be next to him and feel his long eyelashes on my cheek. I wanted to feel his warm high fevered body that was like an electric blanket. Tears flowed, not sobbing, but soothing. Not wanting to show Michael how worried I was about the upcoming MRI, I tried to wait out the tears while laying next to AJ in his dark bedroom. I realized there was no hope of keeping it from Michael, but instead I needed him to share this with me and comfort me. He hugged me and held me as we discussed our fears and what little AJ’s future held. We knelt together and thanked our Father in Heaven for every day we get to have him and hold him and laugh with him. We prayed for strength to handle whatever news might come Monday or any day after that.

BUT, then something WONDERFUL happened… Hunter woke me up at 2 am EXTREMELY sick! We are talking gunk and yuck and blah! I did a little dance of joy in my groggy 2 am state grasping to the hope that perhaps my AJ’s sickness these past 2 weeks has been contagious… not cancer!

A little mommy and AJ nap at the park.

A little mommy and AJ nap at the park.

Of course we have no idea, but we like to hold on to the hope that it is just a bug, not a rapidly growing tumor.

I hesitated sharing any of this because I’m sure to the outsider it must seem overreacting. “Its just a cold…” some might think. And we hope it is. But every time a cold comes to this boy, I’m going to wonder what is really going on inside that head, literally.

Hunter is feeling better today. AJ is a bit better too but still struggling in some things and not back to 100%.

Monday will be the day, maybe not for answers… but at least for an update. We are looking forward to our MRI to see what, if any, growth can be seen of his cancer.

Prayers and love appreciated! Thanks!

Michael with AJ & Houston last night camping on the beach. In the past Michael had said Father & Son's campout was for when they were potty trained and older.  We've learned some things this year and there was NO WAY that this daddy was not taking his AJ this year!

Michael with AJ & Houston last night camping on the beach. In the past Michael had said Father & Son’s campout was for when they were potty trained and older. We’ve learned some things this year and there was NO WAY that this daddy was not taking his AJ this year!

Angels Among Us: Farewell Baby Lindy

Some of you might remember back in December when I wrote a blog post about The Lord carrying us through our trials and a couple women who are examples through trials. I talked about my cousin Sarah who had recently lost her baby to SIDS and a friend Katie who had been diagnosed with cancer and was going through chemo treatments.

Today I want to expound on Katie’s updated story: Good news and not so good news.

The fall of 2014 was a busy time for the Hogue family. Katie gave birth to a beautiful baby girl, Lindy Jo Hogue. Lindy brought joy, laughter and light into her family.
Katie2The week after Lindy was born, Katie was diagnosed with cancer. Despite the terrible disease, the Hogue family continued to be an example of faith and strength. Katie has said throughout her battle with cancer, she felt as if Lindy was sent to her to be a light during this time of hardship.

On April 2, 2015 the Hogue’s celebrated the news that Katie was considered “cancer free”! Happiness filled their family. Next step for Katie was to have surgery to remove the port that had given her chemo treatments every other week for the past 6 months and then begin her life “cancer free”.

She arrived home from surgery, ready to begin her life again as a healthy mommy, to find her sweet baby Lindy, her angel through her 6 months of cancer, had returned to live with her Heavenly Father during naptime. Born the week before Katie’s diagnosis, and returned back to Heaven the day after being declared Cancer Free.

The Hogue family is currently in Iowa for schooling, but will be heading back to Utah for funeral services and to say their “Til we Meet Agains” to baby Lindy.

In your prayers tonight, give thanks for your blessings, and also a special blessing upon the Hogue family .

If you feel so inclined, they have set up a fund to help with travel, medical, and funeral expenses. As the lucky recipient of many donations in the past 6 months, let me assure EVERY donation, no matter the amount, is greatly appreciated (and usually accompanied by tears of gratitude:).

Katie14

Superheroes come in all sizes

Our little Superhero at Radiation Graduation in Dec 2014

Our little Superhero at Radiation Graduation in Dec 2014

As I scrolled through my facebook feed tonight, I came across one of our wonderful Aaron1friend’s from Jacksonville. It was a post full of pictures of Aaron, a fellow proton radiation patient. His beautiful bright smile looks the same. That same smile that used to brighten my day each time I saw him in the halls at proton or the Ronald McDonald House. This time was surrounded by his schoolmates and teachers all dressed like Superheroes.

Aaron3Apparently Aaron’s school decided to declare Superhero Day in honor of Aaron. I don’t know many details, but was touched by Aaron’s army of support. How wonderful for our buddy Aaron to know that he is doing something “Super” with all of his courage going through cancer treatments.

I was surprised to feel my eyes get moist as I remembered that this whole cancer thing does take a superhero to go through. We’ve had a few hard days lately with AJ looking pale, getting tipsy, lethargic, etc etc. All the same signs that helped us lead to his first diagnosis. BUT ALSO, all the same signs that a 2 year old gets when gets sick, or is just tired, or dizzy. Aaron4It is so hard to know the difference and even harder NOT to know if there is a difference. On Monday, after a particularly “sick AJ day”, I found myself rocking him back and forth with big tears coming down my cheeks. Tears of extreme gratitude and great fear. I know AJ’s future is in the hands of the Lord, with some help from wonderful doctors.

Yes, we are doing WONDERFULLY well. AMAZING. Some days we forget cancer even has a place in our family. But then there are Aaron2moments, sometimes hours, and rarely days, that are still hard. Days that end with Michael and I kneeling together to pray at night, and plead with our Father in Heaven that the small ailments AJ is showing are “please please just the flu… and if not, IMG_4237bless us with peace, patience, and guidance”. And then we wake up, and we are refreshed to go back to regular life until the next dizzy spell or fever or MRI (our next one is April 27th).

The last picture I saw of Aaron today was of him running through a tunnel of schoolmates all chanting his name. Some school’s just “get it”. Way to use this trial of cancer not only as a way to boost Aaron, but to show the other kids how to be supportive and empathetic to others.

Aaron, you are a superhero and we are proud of this battle you are valiantly fighting! We all miss you (especially Houston)!

Aaron5

First Scans: ALL CLEAN!!

YEA! We are so excited to share our news that AJ’s first scans are all clear!

We went in Tuesday for our MRI. It seemed like an off day all around. Things were running behind, AJ’s veins were feeling skinny so he had to be poked 4 times before they got him, once actually sedated and having the MRI he woke up 3 times saying “I’m scared, I’m scared!” crawling out of the tunnel of the big machine, so they had to give him more anesthesia to really knock him out.

It was so sad to see him groggily trying to crawl out of the giant donut aka MRI machine.

It was so sad to see him groggily trying to crawl out of the giant donut aka MRI machine.

We have come a long way in the past 4 months. Michael and I were able to sit in and watch the MRI this time. Big machines don’t scare me as much. Instead I have found they almost bring comfort. Michael and I watched that big machine, listening to the loud noises it made through our ear plugs, and both gave thanks for such wonderful technology to be able to help take care of our baby. I didn’t cry until I saw his little body groggily trying to crawl away from the scary machine. They have to put his head in a trap so he doesn’t move but somehow he wiggled out of it. His head poking out of that big donut machine is a site I will never forget.

We were supposed to get our results that night with a phone call from the doctor. The phone call never came so we decided to face the facts it wasn’t coming and headed to bed at 11.

The next morning when we texted the dr at 930 he apologized that his internet was down so he hadn’t been able to pull up the images but would shortly. He called me and said, “It’s all good!” and I, wanting to make sure I was understanding and wasn’t missing the truth through his accent said, “What’s all good?”. He then replied, “The scans, they look all clean! so go enjoy your next 3 months and I will see you then”.

We feel so blessed and grateful to be able to live “cancer free” for the next 3 months (hopefully longer) until the next scan. Cancer Free is a hard term because although we are hopeful and pretty sure we are cancer free, some of those buggers are sleeper cells that we can’t see yet because they are still paralyzed from the awesome proton radiation we attacked them with and we have to wait to see if they get their energy back. We know they were pretty darn aggressive 3 months ago and just hope that the weapon of radiation did the trick to make these bad guys stay away (see how I slipped into my Monologue to how I explain it to Houston there?:) In 3 months we take another scan to see if that is still the case!

Until then… WOO HOO! we will be living life to the fullest!

THANK YOU SO MUCH for all of the any prayers and support and help over the past 4 months! It is kind of weird for to just slip a switch and pretend to go on with life like it never happened, but in the back of our heads knowing it did and might happen again. Thank you for your help these past 4 months! We still have a long journey ahead of us, but they burden is much lighter.

Thank you for being a part of AJ’s team!

Thank you for being a part of AJ's Team!!!

Thank you for being a part of AJ’s Team!!!

AJ’s first MRI is today- Update tonight

IMG_4439

If you are reading this: thanks for being an extended member of AJ’s team

Today is our first MRI check up! From what we hear, no news is good news. Most of our friends have already had theirs, but since AJs was so close to the main blood vessel in his head that probably swelled up a lot with radiation, we had to wait for it to calm back down to be able to see the tumor site. We will post an update tonight when we hear more. Thanks in advance for your well wishes and prayers.

Welcome Home!

AJ is happy to see his aunties Mitzi and Charise.

AJ is happy to see his aunties Mitzi and Charise.

Aunt Char-ee missed AJ so much she came and kidnapped him one night. aka, Spoiling him even more than before, she couldn't stand him crying when she stopped by one night so she grabbed him and took him home to sleep in her bed for snuggles.

Aunt Char-ee missed AJ so much she came and kidnapped him one night. aka, Spoiling him even more than before, she couldn’t stand him crying when she stopped by one night so she grabbed him and took him home to sleep in her bed for snuggles.

We are home!

We are so excited to all be back under one roof! It has been a week and we are finally getting all unpacked, laundry done, house getting cleaner, and settling back in. Our whole family has gotten sick since we got back. It is like all of the germs were building up in our bodies knowing that they couldn’t come out while we were staying at the Ronald McDonald House and are now making up for it!

 

Back to real life outside of our cancer bubble. We have spent the week so happy to be together as a family: going to nativity celebrations, Frozen on Ice, a welcome home party for AJ, cleaning, hanging Christmas decorations, and adjusting to life in our new phase. Since AJ was diagnosed on Sept 12, we had only been home as a family for 2 weeks. Since then we have been to Disney World, had our parents move home from Africa to live with us, and 8 weeks in Jacksonville for treatment.

AJ falls asleep in random places now because he is still quite tired. This was at church on Sunday.

AJ falls asleep in random places now because he is still quite tired. This was at church on Sunday.

Silly Papa Gates wearing  Hadley's princess wig.

Silly Papa Gates wearing Hadley’s princess wig at Disney on Ice.

 

We are getting adjusted to our new living arrangements and after so long are happy to discover our bedroom has a floor! We were starting to question it based on the piles and suitcases we just kept swapping each quick visit home. AJ is doing great, other than his new found narcoleptic-like lifestyle where he falls asleep randomly throughout the day.

 

Thank you for all your prayers and love! AJ has minor surgery to remove his port on Tuesday (Dec 23) and then we wait until February for our next MRI to see how the tumor looks. In the mean time, we will continue to post thoughts and entries that I never finished while in Jacksonville.

Happiness!

Happiness!