My heart broke

This past weekend was an emotional roller coaster for our family. On Sunday our seven year old daughter, Emma, randomly looked at me across the kitchen table and shyly asked, "Is Daddy dying?" Tears clung in her eyes and her little hands were shaking as she took another bite of her yogurt. All the other kids glanced up at her and then at me for my response. 

I took a deep breath, praying for guidance to answer this question in a way that would be most comforting and also honest to our children. You see, after our "not so good news" less than two months ago, Tony and I discussed what, how and when we should talk to the kids about his health. Losing his mother himself at the age of nine, Tony knew that it needed to be a very prayerfully guided journey to discuss this with them, not just a one-time punch in the stomach. We've decided (with some excellent advice from his grandmother) to let the kids lead the way in discovering these things by welcoming and encouraging their questions and then answering them appropriately.

This particular breakfast (as are most) was all on me. Tony was still resting in our bed, fast asleep. I wished I could have jumped on him and asked him to take the lead but I knew I needed to be a big girl and face this right now. How do you talk to your sweet little children about the reality of their dying father? We continue to be hopeful and pray for a stabilization of his condition, or better yet, a true miracle of God. Our kids are full of hope and their faith is much stronger than ours. If Tony is allowed to stay with us and continue to live, it will be because of their faith and prayers. They are the innocent and true loving and selfless whose faith can move mountains if God wants it. I truly believe this can happen. But we haven't been told what our Heavenly Father wants; He is gently leading us along day by day, trying to teach us so many things if I will but be still and learn.

Emma's question must have been prompted by the noticeable decline Tony has had. It's been eight months since his last surgery and official diagnosis of glioblastoma, a brain tumor with no cure. But it has also been almost eight years since his original discovery of his brain tumor. Our kids have only always known that "Daddy has an owie in his head" and that this past year since October 2015 it is getting bigger and making him more sick. Our children can see his decline, how Tony needs more help to walk anywhere and to sit out of bed, etc. They understand that we hope his medicine he receives will help him not get worse, and that the medicine may stop working.

I walked over to Emma and said, "If the medicine doesn't keep helping Daddy and his tumor starts to grow more, Heavenly Father may decide to take Daddy to heaven. Only He knows what the perfect plan for our family is, and no matter what happens, we have to trust Him. Heavenly Father can decide to heal Daddy if that is the best thing for us but He may also need us to learn different lessons."

Fighting back the tears, she nodded at me and looked down. You see, Emma is not shy of asking hard questions (she is sooo much like her father) and I could tell she wanted to know more. Once I invited her to ask more, she jumped up and blurted out, "But what happens when a person dies!? I know their spirit goes to heaven but where do they die and how does their body get buried?!" All the kids look at me while I am stunned that she even had thought of these questions but also grateful that she knew she could ask. We had a few minutes discussion about the whole matter, mainly with our three oldest keenly interested. The discussion ended with love and continued hope for our family, and Tony was able to follow up later that evening.

My heart broke that morning. There's not much more to say than that. I love my babies so much and seeing them worried just plain hurts. But that broken heart was pulled together a bit as I really could see the Atonement and the Plan of Happiness working in their lives. Jesus Christ can even help my little ones in ways that I can't. Having so much understanding from the Gospel is amazing; and our conversation only ended with peace because of what Christ made possible for us. I'm so grateful that God loves us so much that He will do what is right and perfect for each of us. He knows what our little babies need much more than I know, and He will make everything right, even if we feel our hearts are breaking. "Trust in the Lord with all thine heart and lean not unto thine own understanding." That is the true miracle of all, that we can learn and find Christ, and through Him become perfected to live with God again. It will all be worth it.

On an excited note, if our Utah friends want a fun family activity this weekend (with free admission) and hopefully a chance to see Tony dressed up as who-knows-what, come to this fantastic haunted house in our neighborhood! Our dear friend, Randall Jones, is turning it into a (first-time for this event) fundraiser for our family and the Utah Food bank. We go every year and this year we hope to promote this tradition to help future families in need! A HUGE thank you to him and all the many, many volunteers who have put in loads of time to put this together and for thinking of our family. Check out this video to learn more or go to tonymeans.org.

Homeowner goes all out for Halloween to help family in need

To love, to hold.... and to share

At the CEC in Florida, courtesy Erica Richardson Photography 

We had yet another big day at the Huntsman Cancer Institute. After five weeks of continued treatment with two newly added chemotherapy treatments, we were more than ready to hear how the inside of Tony's brain was behaving...

.... And I am happy to report that it is behaving rather well! There had been significant tumor growth the last time we had a status update; today was much better with the image showing only small amounts of tumor growth, small enough that we feel the new treatments are working in halting the tumor from spreading quickly. So the plan is to continue Tony's new treatments (sometimes every week, sometimes every other) and we will have another assessment December 15th. Mark your calendars, y'all ;)

Tony and I want to thank everyone who continues to love and support our family in many different ways. We truly feel your love and prayers buoying us up and helping us to see the good in every day. 

Today's news was a miracle to me. When we talked with Tony's neuro-oncologist team five weeks ago, the prognosis we received was very grim. If the tumor growth continued as aggressively as before, they only expected Tony to live 6-12 weeks (which would put him at the beginning of December with the best scenario). I know...... it was a bit shocking. But here we are, five weeks later and Tony is holding strong in such a beautiful way, with few new symptoms. We now have an unclear (and still holding on to a hopeful) prognosis but are gleefully confident that we will get to enjoy Christmas together, which before seemed impossible according to the medical world. What a blessing! Thank you again for all your thoughts and prayers for Tony, as we feel this is because of the strength of faith we all have collectively; faith literally is a power and this type of faith does provide miracles.

I'd like to share one last thought before I sign off for the next few weeks. One of my favorite conversations to have with others is about the difficulties they have experienced in life, and then to see how they have overcome and grown stronger through their storms. It is such a blessing that we can share with one another our life experiences (as appropriate) so that we may vicariously learn and grow from their stories. I have been strengthened by several people from different situations, some whom I've never even met, because they have opened up and shared hard things. 

Living with someone you love so much who has a terminal illness can be very difficult. There is so much unknown in the future, so many questions, so much heartache and longing for the past. But I promise that even with the emotional and sometimes physical discomforts that are associated with our present lives, peace can be found. The unknown future is replaced with increased faith and trust in God that He will always do what's best for His children, and that He will never leave our side. Questions are replaced with answers of His eternal plan of happiness; God will never forsake us and will bless us beyond our mortal comprehension; many blessings come in disguise that we do not recognize until much later in life. The gift of eternal life with Heavenly Father and our Savior and those we love is possible and attainable if we allow ourselves to follow Him. And the longing for the past, before the difficult time began, is replaced with an assurance that we can or will one day look at our current situation and find deep beauty and appreciation in the heartache. Our hearts will only grow stronger and more tender. Slowly, if we allow it, we become better.

And isn't it great that we can learn these things to a certain degree without undergoing them ourselves? This is why Tony and I share our story. Our hope is that we can increase your desire to turn to the Savior and our Father, to learn that you are worth everything to them. We hope that you can hold your loved ones longer, pray with more sincerity, and turn your lives more toward heaven, leaving behind all the things that do not matter. 

And it will all be worth it.

Dream trip

So this post is going to be a lot of pictures and not very many words!  We had a great time on our trip made possible by the Dream Foundation to Orlando last week where we were able to visit the Center for Elephant Conservation and spend a day at Universal Studios and a day at Disney's Magic Kingdom. Tony's family was able to meet up with us for this trip and experience a great time as well. A group of 17 (with more kids than adults) is not for the faint of heart; we sure had to rest up once we were all home!

Tony did wonderfully well on the trip and enjoyed watching the kids have a blast. He especially loved meeting an elephant, Mysor, who is 70 years old, and getting to pet her trunk and feed her bread straight into her mouth. It was incredible!

Hope you enjoy my amateur pictures taken on my phone!

The pilot invited the kids to fly the plane ;)

 Universal Studios: spent most our time at Harry Potter world enjoying lots of butter beer!

At the CEC--- enjoying Mysor and seeing all the elephants (more than 35!).

Disney World (Magic Kingdom)-- Jennifer (my birthday twin from high school), as well as lots of pictures of the kids with princesses and enjoying the parade.

Strength is not something you have, it's something you find

Our news today was not quite what we hoped for. Right now we are sitting on the 2nd floor of Huntsman looking out over Salt Lake valley, thankful for what we do have, and that is so much.

Unfortunately, Tony's tumor has had significant growth. We are nearing the end of our options but are thankful and hopeful that we can still fight. Tonight he will take a new regimen of chemotherapy (orally) and will continue Avastin infusions every other week. His next scan will be in 6 weeks, and we are hoping the new added chemo will help the Avastin to keep any growth at bay for awhile. In the meantime, our medical team is working on getting a drug that will target specific mutations in his tumor, which we will begin as soon as we have clearance from insurance. These infusions will be every 3 weeks.

Tony's doctors were impressed with Tony's physical and mental capacities as they were expecting less function solely based off the MRI images. Although he has experienced an increase of weakness in his left leg (namely his ankle, hip, and knee) we are thankful that he has so much movement and abilities. The next couple of weeks he will be resting in preparation for a trip we are taking to Florida as a family (made possible by the generous donations of the Dream Foundation) to visit the Elephant Conservation and a couple of theme parks. We are really looking forward to such a wonderful trip and will be taking it easy until then and shortly after so that Tony can rest.

As a final thought, "Strength is not something you have, it's something you find" (Emma Smith). We are continually learning that we do not have our own strength but that it is only found through Jesus Christ and our Heavenly Father. I know there is no other way to find the peace and joy that we have found other than through gaining faith in our Creator and our Savior, and it is a continual and constant process. I am so thankful for the joy we have and that we can live together as a family and with our God.

One year: miracles

This Labor Day weekend marks one year since Tony had his first seizures, which indicated that his tumor was once again active and growing.

In October 2015, Tony underwent a craniotomy to resect the tumor (grade III astrocytoma/ also known as anaplastic astrocytoma) and followed up with oral chemotherapy in November 2015 until February 2016.

Despite the chemotherapy treatments the tumor grew back and doubled in size, revealing its mutation into a grade IV (glioblastoma) tumor, which meant more surgery in early March.

Surgery was followed with combination chemotherapy and radiation for six weeks in April and May, and for preventative measures and in order to be aggressive, Tony began Avastin infusions in June.

It is now September and Tony is continuing to receive Avastin infusions with the hopes that it prevents the tumor from growing any larger. I sure think this tumor is stubborn but I know my Tony is more stubborn! We continue in our fight and know we will persevere and win despite what the physical outcome is. Faith, hope, and love are the strongest powers and we have them pouring in from all over.

Tony wanted me to post this today and thank everyone for the continued love and support, and especially your prayers. He wanted me to ask if everyone will pray for him the next few days. On Thursday (the 8th) Tony will have an MRI scan to see if his tumor is still responding to his current treatments. It is always nerve-wracking on these days. I cannot express how much Tony appreciates and is humbled by your thoughts and prayers on his behalf.  We only hope that we may return your love in someway; please know that we care deeply for you.

This past year has been incredibly wonderful. In all honesty, we have had lots (and lots) of tears and hours spent on our knees, and sometimes our home can get a little chaotic with the added stress of a disease that has changed much of our daily lives. But it has been so sweet and tender for us. Our marriage has been strengthened more and we have had many opportunities to share and teach our children about what is most important in life. We have had sacred experiences with others that have stretched our faith and helped us to blossom in ways we never knew we would at this time in our lives.

We have seen countless miracles and blessings. We welcomed our baby girl into our family on Tony's birthday. We have been blessed by insurances and programs set up through Tony's employer. We have received so many generous donations in monetary funds and in service. We have been strengthened by your love and prayers for our family. It had been very sweet to us to spend so much time together, and with our children, that normal life inhibits most of us from doing so. And most recently, we are going to be blessed with another baby in our family. The Lord works in mysterious ways, and He is blessing us with a miracle baby that we never even thought could happen.

My love for Tony has increased as I have been able to serve him in ways that isn't typical of our ages. I tease him that he is my old man that I get to care for and love, and I secretly love doing so. As much as he needs me to help him with daily activities, I realize more and more that I need him just as much. Next to my Savior, he is my rock and my confidant. I love that he isn't afraid of helping me grow and stretch, even if it is emotionally difficult. Doing so has opened my eyes and I now see the world in a different light. As much as I hate the idea of the possibility of Tony leaving this world and the deep heartache associated with it, I wouldn't change the plan that God has for us. It is because of our Heavenly Father that we have everything that we have and He has blessed us more than we could ever deserve.

Tony is a miracle to me. And I trust God that He will continue giving us the miracles that we need, even those miracles in disguise. I love my God and my Savior for making everything possible in all our lives. We are all so blessed.

Mountains to climb

First off, an update on Tony! I am very happy to say that Tony is feeling much better lately. After getting over his infection and finally being able to eat again, he is able to be up and awake for longer periods during the day, and on really good days with only one long nap! He continues his Avastin infusions every other Thursday and the drug seems to be helping by keeping things constant. We are so grateful that we are able to have him feeling better and to spend more quality time together as a family. For about six weeks, everyday was difficult for him and we were worried he was beginning a long decline but now things have looked up a bit more and are staying steady. Lately he is having a lot of pain in his left shoulder and arm (which are almost completely paralyzed and have little to no movement). Since March, the weight of his shoulder has slowly been causing problems to where he now has a lot of pain upon movement. We take as many precautions as possible to give him relief and are hoping we can continue to improve ways to keep his shoulder and arm as comfortable as possible. We feel very blessed.



The first weekend of August, Tony and I were fortunate enough to go on a short trip to southern Utah with our dear friends for a few days. It was great to get away from everyday cares and to spend some good time connecting and relaxing. We left ALL our kids (including our baby!) with family, something we've only done once for our anniversary overnight and when Tony has been in the hospital recovering from surgeries.

On our way home, we visited Bryce Canyon, a first for both Tony and me. We had been traveling a good portion of the day by the time we made it to this beautiful look-out, and by then, Tony was exhausted and opted to stay in the car to rest. The thought of getting out of the car, into his wheelchair, and then back into the car can be daunting for him sometimes. That's a lot of work for him!

Tony rested in the car as my friends and myself ran up to the view point to snap a few pictures so I could bring them back to show Tony. It was breathtakingly beautiful. Many of the visitors to the canyon were prepared to hike, and I thought how it must be an amazing yet exhausting hike down and back up again. In Utah, there are mountains varying in beauty all over the state. One day I want to hike many of these mountains. Being surrounded by God's creations is like a hymn to my soul. It's grounding for me, and healing for the many difficulties we have in life. Looking out at this view, life places itself in perspective for me, and I realize that the figurative mountains I now climb can be a balm to my soul if I allow them to be.

If I turn to God and to my Savior, I won't have to climb alone. And if I allow myself to stop and take in the view of all the beauty around me, I will begin to appreciate the difficult tasks I have conquered with them and will gladly face the ones ahead of me.

Tony and I still have our nightly talks as I rub his sore muscles on his body. Tonight we watched a short video "Mountains to Climb" with our children before bed. I cannot help but feel the love my Heavenly Father has for me, and be uplifted by my Savior's desire to help carry my load. Tony and I discussed this video in detail and we came to one very important conclusion: Our plea to God is to keep giving us the mountains that He wants us to climb, for our happiness and joy lies within the lessons we learn from these experiences. With the help of our brother, Jesus Christ, we want to gladly accept the mountains that God has laid out for us and cheerfully bring our family along.

I hope we are choosing to move another foot forward each day with eyes toward heaven, hands grasping each others and our babies, with tears of gratitude in our eyes. More than anything, we want to live with Heavenly Father and our Savior again with our family, and if we need to climb these mountains and many more to make it to them, I will gladly jump up and down and shout to get on the path now. What could matter more?

Here is the video for you to enjoy!
Disclaimer: For those of you who know me well, you understand that I don't cry very often. Don't get me wrong, I'm very emotional but rarely are these emotions accompanied by tears. This video is an exception for me. You won't find me watching it in public :)  Let the tears flow, y'all!

The elephant in the room

It has been five weeks since Tony's last appointment with his neuro oncologist, where Tony had two treatments of Avastin infusions over this time. Yesterday Tony had another MRI to see how the tumor is responding to the treatment.

If you can last remember, the previous MRI after chemo and radiation wasn't very promising. Half of his brain looked like swelling and/or tumor growth. Now.... we are very pleased to say that it in fact was swelling and the swelling is now gone! The tumor remains stable right now, meaning we will continue more treatments every other Thursday to try to keep it from growing and will have a follow up MRI and appointment September 9th.

Lately Tony has dealt with an infection in his colon, giving him severe stomach pain when he moves and some awful nausea (but thankfully no vomiting). Just today, the nausea has finally subsided and he was able to eat---- drum roll, please--- a piece of toast! My poor guy has lost about 30 pounds in a month because he just couldn't bring himself to eat literally anything lately. We are hoping this continues to improve as he finishes his antibiotics so that he can have his manly appetite again to match his manly beard :) Move over soups and smoothies and pass him the steak and potatoes!

And now for the elephant in the room. I have two explanations for this for you today.

1) Our family life has now transformed into a very different "new normal" that we are trying to adjust to. We have reached the point in Tony's illness that he is unable to be out and about much or stay up for long periods of time without extreme fatigue. Much of his time is spent sleeping, and when he is up, he is still resting. I've noticed as friends, family, and former students (and even some of our health care team) interact with him, they can see the physical change. My loud, talkative, sarcastic, laughing husband is so much more mellow now. It's difficult for him to hold long and deep discussions too often.

Now the elephant in the room is that Tony has a terminal illness. He knows it, I know it, everyone we associate with knows it, yet sometimes it is difficult for some to talk about. I often get the question, "Why is he so tired? Won't medications, diet changes, or more physical activity change that? What about physical therapy? I thought his medications are helping, so why aren't there physical improvements?" The honest truth is that's what brain tumors do. Tony's tumor (the size of a tangerine) has pushed all the good brain tissue away from its original space, causing pressure to build up in his brain. There can be lots of different symptoms based on the location of the tumor in the brain but in each case fatigue can be the biggest enemy.

Because of his need to sleep, we are often going to places or having daily meals, routines, etc. without him. I think it's very emotionally difficult for him as well because he wants to be present for everything but it's physically impossible much of the time. Often I reassure him about his importance as a husband, father, son, brother, confidant, and friend. There is much he continues to offer to us all and I am humbled to be with him and be blessed by his wisdom and love. He has the opportunity to spend time in reflection and prayer and in turn has blessed our family from his experiences and learning.

I've recently come to the understanding that I miss parts of him. Now I am so so so thankful for the time we have to spend together, and that his personality remains true to his self and character, but I miss what it was like when he wasn't ill. My kids and I attended two LDS baptisms last weekend for our close friends, and while driving home, my heart ached. I wish he could be with us for all things he was with us before. Running errands, attending all our church services, going to the park, venturing out into the mountains, visiting the pet store. I miss surprising him at work when we would randomly show up to visit. I miss watching him wrestle with the kids and dance like a fool (!) in our living room.

But for all the things I miss, the Lord has given me the opportunity to enjoy the new things in our life. As opposed to before, we get to spend more time alone together due to driving back and forth from Salt Lake for his treatments/ appointments. I am blessed with his tenderness and sensitivity. He has always had an appreciation for me but that has only grown for each of us. I am blessed to physically serve him and am thankful for his emotional service to me. We both need each other equally through this, and will rely on each other forever. Our partnership with each other and with God will transcend through anything, even the bonds of death.

I look forward with great anticipation to see Tony break the chains of his physical limitations, for him to have a complete and perfect resurrected body, and for us together to serve our God and King for all eternity.

There is no doubt in my mind or my whole soul. My heart knows these things with a complete certainty.

Just like our five year-old Lily's picture at the beginning of this post, Tony is our blessing.


Now the other elephant in the room is a bit more exciting ;)

2) After we visited with our neuro team at Huntsman yesterday, we were able to visit the research lab of our genetics physician. He is the one who oversees all the screening care for our family and is doing some AMAZING research. Dr. Josh Schiffman's breaking research was published in the JAMA in October 2015 and has now had publications covering his research in 150,000 publications around the world. If they can meet their goal of raising $20 million (through donations or investors), human trials can begin in three years, and our family will definitely be first to sign up!

Essentially, elephant p53 will be inserted into nano particles that will be available in an oral medication over-the-counter, boosting our bodies' ability to fight off cancers. This would be wonderful not only to our family but to the general population. I'll be giving more details as time goes on but in the meantime, check out these videos that explains Schiffman's research, one of which features a few snip-its of our family at home.