Wednesday, October 26, 2016

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

Thursday, October 13, 2016

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.

Friday, October 7, 2016

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.