Friday, December 30, 2016
32nd birthday and 1st birthday
Yesterday (the 29th) was Tony's 32nd birthday and Amelia's 1st birthday. Christmas was a few days ago and tomorrow is New Year's Eve. Today also marks four weeks since Tony has passed away.
When Amelia was born at 1am on Tony's birthday last year, I knew it was because Tony wasn't going to be here on Earth physically for all the birthdays they would share in the future. This was for Amelia's sake so that as she grows she will have a special connection with her dad even if she can't remember anything about him. It also was a blessing for my family that they share a birthday; it made a day that could be difficult turned into a day where we learn to lay aside our sorrows and celebrate our sweet baby girl and her daddy!
Several people have been wanting to know how we have been doing this last month, especially recently as we have celebrated a few major holidays. As for my kids, they are doing as well as can be expected. One child has a breakdown each day, and each in their own ways, about missing their Daddy. It's interesting to see how their coping is as different as their personalities. I have one child who is trying to be a mirror-image of his father, who constantly talks about Tony and asks questions about him, while I have another who just flat out breaks down in tears completely unexpectedly. And there is a whole spectrum of coping in between that. Sweet little Sophie (4) hasn't said much about Tony passing but the day after Christmas she really struggled. As I was putting her to bed that night, she shyly ran up to me with her new toy, very upset and cried, "Daddy doesn't know that I got this for Christmas!" and then began to cry for the first time since his passing. It's like her little heart couldn't hold it in any longer.
The tender mercy of being around grieving children is that they are so loving and resilient. Yes, they're learning to cope and we have challenges that arise because of that, but it gives us (me with each child one-on-one) more opportunities to sit and hug and learn and share together. I'm glad I have them and it's more than they will ever know because they are what keep me moving forward and bring so much life to each day. They are the reason that we had a nice Christmas; their excited faces and wonder-filled eyes kept me pushing on, giving me something to look forward to as a mother.
When I'm asked how I am really doing, I'm not sure how to put into words my emotions. It's as if I am still in denial about Tony's death, even though I know it happened. During the day one of my kids will say something cute, or I look at a picture from years ago, and I think to myself "I can't wait for Tony to be home today so I can show/ tell him about this story!" And then I have to remind myself that I can't physically talk with him about that... Or about little frustrations I have... Or about upcoming plans to make... Or to just cuddle on the couch at night. I know it can't happen yet my mind still thinks he is coming home. Once in awhile (mainly at night when it's quiet and the kids are all sleeping) it will hit me that Tony is gone and the feeling only stays for a few minutes. I'm told this is a normal part of the grieving process and to enjoy staying here until the punch-in-the-stomach comes. So I will be grateful that the Lord is helping me through this process, and that He will help me through he next stages when He knows I am ready. All I can do is just keep trusting in Him and I know it will all work out.
A real difficulty I have been experiencing lately is not feeling Tony with me. I've always thought that when someone you love passes away that you will feel them close at many times, maybe not constantly but at times you need it. Now I do feel a calm rush of peace flow over my body when the waves of grief hit me and I am grateful for the Spirit's constant reassurance and companionship. But I don't feel Tony near and I keep blaming myself that I am distracting myself too much (work can do wonders for a grieving heart, so I've been doing a few projects here and there to pass the time at night). A few nights ago I was laying in bed, crying because I couldn't feel him and it has felt like so long ago that Tony died, so much that I ached to know he was close. I prayed and prayed for help to feel him near but I felt nothing. I went to sleep hoping for an answer soon.
Tonight I had a stranger teach me just what I needed to know and it really was an answer to my prayer. Her husband had passed away from brain cancer and had paralysis on one side of his body, just like Tony. When he was alive this woman used to hold her husband's paralyzed hand to which he would reply in a small frustration, "I can't feel you holding my hand and I desparetly wish I could." Her response was simple, "I know you can't feel me but I promise I am here and will stay here." After her husband passed away, she experienced the same frustrations of not feeling him near. She then remembered the hand holding story and how her husband needed to trust that she was there for him. Now it was her turn to trust that he was there for her, even if that meant she couldn't feel him near. What a beautiful example of faith and trust!
I may not feel Tony close to us right now but I know he is. Trust and faith is a constant learning process and we can't take even one day off from trying. I need to do the same with my own emotions and worries and desires: to lay my burdens at His feet and allow Him to carry me when He knows I need it. That's a beautiful and powerful part of the Atonement of Jesus Christ and when we apply this love to our life, it can heal us so much.
Lily (5) jumped in my arms tonight before bed and gave me a huge hug with one arm around my neck and her other arm clenching onto "Daddy's blanket." She kissed my cheek with her warm wet lips and (almost shouting!) exclaimed to me, "Now I can have a hug from Mommy and Daddy at the same time! Daddy is always with me!"
Yet another answer. Keep believing and keep trusting and God will take care of us.
Monday, December 12, 2016
It's gonna be okay
My children and I cannot begin to express our thanks to everyone who has been so kind to us this past year, and especially the last month. Generous love and kind words have warmed my heart and helped me to know that "It's gonna be okay." In time, I will try to thank everyone personally as things settle down but for now, please know how grateful I am to you. Tony's service was beautiful and the Spirit was very strong. I'm sure Tony was very pleased and wants you to know how much he loves you each individually, just as I do!
Many people have asked how our kiddies are handling the past 10 days. I'm amazed how much Heavenly Father sends His love to comfort them. They each have moments where they break down and sob in my arms but are still able to remain happy, loving kids. They even put on a dance performance last night and exclaimed, "I'm sure Dad loves watching this!" He did.
Losing Tony right before Christmas has its challenge that we will have our first holiday, and our favorite holiday, without his physical presence. But I am also so thankful for the season, that my kids are excited and feel the Christmas spirit even with grief in our lives. We have much to look forward to and I am grateful that Tony was able to Christmas shop with me (thank you, Amazon!) before he passed.
This song by the Piano Guys is very fitting for how I feel. Hope you enjoy watching! Also, I've attached the words I shared at Tony's funeral for those who wanted to read them.
I love you all!
There may be
many of you today who are wondering why I chose to speak, I sit here myself
asking why as well. Before Tony’s passing, he mentioned that he would love to
have me speak at his service if he was to leave this world, and that he wanted
me to talk on eternal life, and continue to share his testimony along with mine.
In order to keep my best composure, I have decided to write these things out in
hopes that the Spirit has guided me in best relaying what our Father in Heaven
needs us to hear, and what Tony and I have learned through our trials and
experiences.
The great Plan of Happiness truly is as its name proclaims: a
perfect plan for us to obtain true happiness, or as I refer to as joy. Our
spirits, begotten of our Heavenly parents, needed to come to mortality to
receive a physical body, a family, and experiences for us to strengthen our
desires for good. After passing through these things, we have the opportunity
to obtain eternal life with our Creator and our Savior. There is no greater
happiness or joy than in our relationship with them, for this truly is the Plan
of Happiness. God knows the best and only way to give us a fullness of joy and
He has provided a way for us to obtain that. As we read in Proverbs 3:5-6 we
need to, “Trust in the Lord with all thine heart; and lean not unto thine own
understanding. In all thy ways acknowledge him and he shall direct thy paths.”
All of us here today are still being tried and tested but it
is not in vain, it is God’s perfect way! Only He knows what we must undergo in
order to become as He is, and this plan is unique and individualized for every
single child He has. Holding onto our faith, which stems from the trust we have
in Him, I promise that we can all become perfected, even so that we can dwell
with our Father again. Because God sent
His Son to atone for our sins and to break the bonds of physical death, we can
rely on Jesus Christ to help us every step of the way.
I know this to be true because of the experiences I have had
with Tony, and for the experiences I have already had this past week. With such
difficult circumstances we faced, and will continue to face, there is only one
way the Lord has provided a way to feel peace; that is through trusting
Heavenly Father and Jesus Christ. Lay your burdens at their feet and live to
the best you can; I promise you will see the daily miracles in your life that
will begin to change your heart and fill your soul with lasting peace and
happiness. God did not intend for this mortal journey to be only filled with torment
and sorrows, His intent is for us to experience these things so that we can
turn to Him to find and know with a surety that He loves us and will provide a
way. Our Savior can heal all wounds, even the wound of my heart missing my
Tony. Mosiah 14:4 reads “Surely he has borne our griefs and carried our
sorrows…” Tony knows this to be true and so do I, without a doubt in my mind.
Because of our Savior, He not only heals our hearts and helps
us find solace for our grief and worries, but He has also made it possible for
us to be together again. “…God hath given us eternal life, and this life is in
his Son” (as we find in John 5:11). One
day, Tony’s spirit and his body will be reunited, perfected and free of any
disease! He will run to our children and throw them in the air with both his
arms, something he was unable to do in this life for the past eight years. And
the joy does not stop there. Hand in hand, we will kneel at our Savior’s feet
and thank Him for eternity, for giving us the beautiful gift of eternal life
with Him and with those whom we love so dearly.
I thank my Elder Brother for helping bear the burden of the
sorrows I have in this life. He has lifted my chin up so that I can look
heavenward and recognize all the miracles around me. He gives me the strength to look toward a new
day and to press onward, with an increased faith in Heavenly Father. I know He
will direct me in this life exactly as I need, so that I can reunited with
Tony, never again to be separated. The Atonement has and will continue to
strengthen and heal us, and will miraculously break the bonds of death for us
all. Heavenly Father and Jesus Christ love us, and if we turn to them, they
will always be there every step we take in our journey back to them.
Wednesday, December 7, 2016
Simple truths and the obituary
A good friend of Tony's shared a few thoughts with me since Tony's passing.
"Thanks to Jesus, death is a comma and not a period" (Elder Maxwell) as well as, "In order to take the mourning out of death is to take love out of life."
I thought both of these thoughts were fitting for how I have felt over the past six days. Even with all the planning that goes into a funeral, life has slowed down a bit and I've had many more quiet moments to reflect and pray.
Losing Tony temporarily in this life has been the most difficult thing I have experienced so far. And as everyone who has lost someone close due to a terminal disease has told me, even with the time you have to "prepare" and come to peace and acceptance about it, there is no way to be fully prepared for it. That is most definitely true.
I'll have time in the months to come to really dig down deep and share all the thoughts zooming through my head. But these two are some of the most important that I have continued to learn this past week:
-Because of Jesus Christ, and only because of Him, death is a comma. Without Heavenly Father's Plan of Happiness and the Atonement of Christ, we would all die and cease to exist. This life would be in vain and would have no true purpose. I know without a single doubt in my mind that Tony and I will be reunited together again as one, with our precious children and all the family we love so dearly. Even though Tony is no longer here with me physically, I will forever remain his wife and he will always be my husband, and together we will raise our children in light and truth. The gratitude I have for my Savior has increased exponentially as I recognize the hole in my heart and know that it will be pieced together again through the Atonement and the Resurrection. And how great our joy will be as Tony and I can walk hand in hand again one day and kneel at the feet of our Savior and weep with tears of gratitude. All the pain and heartache will be worth its cost, and Christ will bare more than His share for me in the many years to come. We are all so loved.
-Grief is essential to our spirits, just as much as love is. There have been moments where the grief seems unbearable, where I want to cry out in pain as I feel my chest collapsing in sorrow. That's how it feels to me, and I hate when it comes crashing in. But I am thankful for this deep emotion as it's a reminder of how deeply I love Tony, how full and enriching our marriage is, how we were really able to connect "as one" over the past decade. I would do it all over again a thousand times to be with him forever. I will welcome the grief to continue to have all this love. We will be together again, and until then, I never want to forget how Tony makes me feel as a wife, mother, and above all, a daughter of God.
Thank you to everyone who continues to reach out to my family and me. I'm overwhelmed and grateful for all the love and support, and within time, hope to respond to all the beautiful and comforting words that have been written to me. Sometimes there are no words and a hug can make all the difference. Thank you.
Here is Tony's obituary for those who are interested in information about his services this weekend:
"Thanks to Jesus, death is a comma and not a period" (Elder Maxwell) as well as, "In order to take the mourning out of death is to take love out of life."
I thought both of these thoughts were fitting for how I have felt over the past six days. Even with all the planning that goes into a funeral, life has slowed down a bit and I've had many more quiet moments to reflect and pray.
Losing Tony temporarily in this life has been the most difficult thing I have experienced so far. And as everyone who has lost someone close due to a terminal disease has told me, even with the time you have to "prepare" and come to peace and acceptance about it, there is no way to be fully prepared for it. That is most definitely true.
I'll have time in the months to come to really dig down deep and share all the thoughts zooming through my head. But these two are some of the most important that I have continued to learn this past week:
-Because of Jesus Christ, and only because of Him, death is a comma. Without Heavenly Father's Plan of Happiness and the Atonement of Christ, we would all die and cease to exist. This life would be in vain and would have no true purpose. I know without a single doubt in my mind that Tony and I will be reunited together again as one, with our precious children and all the family we love so dearly. Even though Tony is no longer here with me physically, I will forever remain his wife and he will always be my husband, and together we will raise our children in light and truth. The gratitude I have for my Savior has increased exponentially as I recognize the hole in my heart and know that it will be pieced together again through the Atonement and the Resurrection. And how great our joy will be as Tony and I can walk hand in hand again one day and kneel at the feet of our Savior and weep with tears of gratitude. All the pain and heartache will be worth its cost, and Christ will bare more than His share for me in the many years to come. We are all so loved.
-Grief is essential to our spirits, just as much as love is. There have been moments where the grief seems unbearable, where I want to cry out in pain as I feel my chest collapsing in sorrow. That's how it feels to me, and I hate when it comes crashing in. But I am thankful for this deep emotion as it's a reminder of how deeply I love Tony, how full and enriching our marriage is, how we were really able to connect "as one" over the past decade. I would do it all over again a thousand times to be with him forever. I will welcome the grief to continue to have all this love. We will be together again, and until then, I never want to forget how Tony makes me feel as a wife, mother, and above all, a daughter of God.
Thank you to everyone who continues to reach out to my family and me. I'm overwhelmed and grateful for all the love and support, and within time, hope to respond to all the beautiful and comforting words that have been written to me. Sometimes there are no words and a hug can make all the difference. Thank you.
Here is Tony's obituary for those who are interested in information about his services this weekend:
Daryl Anthony Means, also known as Tony, age 31, of Orem,
passed away on December 2, 2016 (glioblastoma brain cancer). He was born
December 29, 1984, in Orem, Utah to Daryl Von Means and Sharese Thompson Means.
Tony married his eternal companion, Erica Alyse Kendall Means on June 8, 2007
in the Nauvoo LDS Temple.
Tony completed his bachelor’s degree at Brigham Young
University in health education and pursued a career teaching seminary for the
LDS church at Orem High from 2012-2016. His passion for the gospel, his Savior and
his students impacted hundreds of lives while teaching. Movies, music, camping,
and anything Scottish filled his time but above all, spending his days with his
family was his favorite pastime. Being a husband and father was his top
priority in all he did.
Tony is survived by his wife (Erica Means) and children
(Daryl Landon, Emma Alyse, Lily Kendall, Sophie Mae, Tanner Fielding, Amelia
Rose, and soon to join the family, Caleb Anthony); by his father (Daryl Von
Means); his sister (Lindsey Rebecca Means); his brother (Andrew Warner Means).
He was proceeded in death by his mother (Sharese Thompson Means).
Funeral services will be held Saturday, December 10, 2016 at
11 a.m. in the Northridge Stake Chapel, 1660 N 200 W, Orem, Utah. A viewing for
friends and family will be held Friday evening from 6 to 8 p.m. at the church
as well as Saturday morning from 9-10:30 a.m. Burial will be in the Orem City
Cemetery. In lieu of flowers you may donate to Huntsman Cancer Institute’s
elephant and cancer research at huntsmancancer.org/donate and indicate the gift
is for Dr. Schiffman’s lab in the notes section of the online donation form.
Friday, December 2, 2016
Peaceful sleep
My dear Tony passed away last night. It was peaceful, sweet, and quiet with no struggle or pain. I laid next to him in his bed for an hour before the funeral home came to take and protect his body for us. I will miss stroking his hair, rubbing his ears, holding his hands, and kissing his perfect lips, among so many other things that I hold so dear and sacred. We have a beautiful and enriching marriage together, and were blessed with seven wonderful and special children. They are all doing okay and we will make it through slowly, one step and tear at a time. Families really are forever and Tony will be waiting for us, helping guide us each day.
I'm in too much pain to write more and I can't see the screen. I'll post further arrangements once I have them planned. Today, give someone a compliment just as Tony does. Find someone who is downtrodden and lift them up.
I love you, Tony. Please keep my heart safe until we are together again.
I'm in too much pain to write more and I can't see the screen. I'll post further arrangements once I have them planned. Today, give someone a compliment just as Tony does. Find someone who is downtrodden and lift them up.
I love you, Tony. Please keep my heart safe until we are together again.
Wednesday, November 30, 2016
The dying and the living
A few days ago, Tony placed his hand on my growing belly to feel our baby Caleb moving. His eyes lit up as he whispered to me, "I feel him! He is such a strong boy. I can't wait until he is here." Afterwards, he closed his eyes and slept for a few more hours.
The last few weeks have been a whirlwind for our family. Tony slowly began losing the ability to walk or get up without great assistance, his voice became quiet and only whispers came out of his mouth, and his consciousness was beginning to fade. A really hard decision had to be made: do we try to continue these last two treatments until his next MRI, or do we transition now to hospice? Tony was unable to help in the decision, not fully understanding his new deficits and lack of energy. By Monday (just two days ago), I knew it was time and that this would be the best support for him and our family. Talking with our doctor on the phone, he agreed and said the treatments are no longer helping and his significant decline means we are nearing the end. Tony could have anywhere from a few days to six weeks; every patient is so different making it difficult to determine an accurate time frame. My prayer for Tony right now is that he can remain without pain and that he can be at peace with our family.
Hospice arrived yesterday and set up a hospital bed and all the other support we need. Tony had declined so much in one day that he had to be carried downstairs to where we are keeping his hospital bed. He is next to a cozy gas fireplace with his Christmas gift from our kids wrapped around him. He loves his new blanket (pictured above) and enjoys listening to the kids point pictures out and talk about each memory. Tony now sleeps most of the time and is fading quickly. I am so happy that he currently is in no pain and is still aware of us being around him when he is awake. My mom is staying with us to care for the kids 24/7 so that I can sit by Tony's side as often as needed. And Tony's male members of his family have been able to help me care for Tony's physical needs since he can no longer get out of bed. Our needs are being met very well right now.
As Tony placed his hand on my stomach, I watched as he tenderly expressed his love for this baby and our children. Watching my dying husband place his hand near our living, growing baby welled up soft tears in my eyes. Something tender and sweet swelled in my heart while accompanied with grief and sadness. The grief stayed for a short while and then faded as I looked toward heaven thanking for such amazing miracles we have experienced and will continue to experience. If we just look a little further, we will always see how miraculous and wonderful our lives are and how loved we are by our Heavenly Father.
I prayed to God that if we must undergo this deep sadness and loss in order for us to become as He is, than I will do it willingly. I don't want to, it's too painful to look into the future and see an empty space at our table, and to feel half my heart dying with him. But I do trust God with that same heart, and I know that He will help me to heal and that my Savior does understand me completely. I may lose half my heart but the half that is remaining will grow stronger over time. I know we will be okay and that wherever I lack in raising our seven children, God will make up for my inadequacies and mistakes and will be there for our babies every step of the way. He loves us and will never forsake us.
Again, I want to continue to thank you for so much love and support, especially for the power of your prayers. Right now we will be spending every moment we can as a family and will focus on keeping our home as quiet and as sacred as we can in order to help our kids. With Tony's current condition, he can no longer respond to phone calls, texts, or messages but if you would like to share a word with him, please contact me and I will relay your thoughts to him as best I can. For right now, I won't be responding to messages but will do so when I get the time in a later date so please know that I am not ignoring you ;) Time is precious and each day is a gift. We love you all.
Saturday, November 12, 2016
Grateful
It's moments like this above when one word pops into my head: grateful.
Each of our kiddies gets a turn to sleep between us in our bed each week. I'm so glad I had a quick moment when I woke up after Lily's sleepover in our room to take this picture. It's really priceless to me. They both were really asleep! (Although the flash may have woke Lily up!)
Being November, this is an appropriate post. It wasn't the upcoming Thanksgiving holiday that prompted me to write but instead the incredible outpouring from all of you. After our short clip about the Halloween haunted house fundraiser on the news we have been incredibly blessed by generous donations to our family. With this money, we spent a small portion on some special Christmas gifts for our children and have placed the rest in savings with the intent to use it for continuing medical bills or whatever may seem fit in the future to help our family. This money is very special to our family and we are trying to use it wisely because of the many sacrifices given by others. Tony and I were very touched by the simple coins donated from some families because they had nothing else to give; we were moved to tears from such great love.
There have been several other fundraisers (such as the Fun Run and online accounts) in the past that we just want to say a big heartfelt thank you to each individual who helped in every way. We have had meals brought in, many babysitting hours given, and have been given special opportunities that we may never have received without you thinking of our family. It means so much to us and has made a fun and relaxed atmosphere for our kids-- and that is something so important in our lives right now. Thank you.
*Update on Tony: He is doing well and continues his treatments each week/sometimes every other week. Many have noticed his decreased energy levels recently, which is expected with this disease, but he remains in good spirits as always! Tony is very excited for the upcoming holidays and I have planned a few fun family Christmas activities for him and the kids. His next appointment to check the stability of his tumor is on December 15th; I plan on posting that evening with the results. We are continuing to pray for Tony to get better, and our kids are the biggest advocates. Thank you again for the continued prayers in his behalf. Faith can move mountains if God is willing!*
Talking with a good friend the other day, I was trying to put into words my feelings of deep gratitude for all the help we have received and how I feel undeserving of it all. I feel that my "thank yous" fall short of how I really feel and that I cannot express truly how Tony and I feel toward you all. As I reflect on my imperfect heart, my mind quickly drifts to my Savior. All my life, I have always felt undeserving of His love and His atonement for me. Why did He do this for me? I am nothing special, I have no particular great talents to offer, I am just me, nothing of importance. I am "confused at the grace that so fully He offers me." And then again, why me?
Don't we all feel this way in our lives at some point? We have been blessed with so much yet our contributions are hardly any match to what we have been given. Through this past year, I have often paused to ponder the many blessings our Father has showered upon our little family. Interwoven with all the heartache, tears, questions, and worries are the wonderful things we never knew we could experience. My eyes have been opened to the wonders of heaven that are here on Earth and deep appreciation has grown in my heart, causing it to swell at times.
That burning feeling must be the beginnings to answer my question. Why me? Why are we so blessed? It's because of love. Our Heavenly Father and our Savior love us. Period. It's simple! We don't have to do anything or be anyone special because in their eyes, we already are. So that is what you all must be feeling about our family; you love us just because, even if we have done nothing of importance. You give and love so willingly because you are becoming as we are asked to become. Thank you for teaching me and helping me to better understand such compassionate love. In turn, I am trying to love as my Savior loves, to pray with more intent and think on others and less on my own life, to reach out more. My heart has felt more compassion towards others' situations, and I am finding that I want to be better and that I now know how I can do that. Your service to our family has not only helped us in our time of need but will continue to help us throughout our lives as we in turn "pay it forward" and try to become as our Savior. This is the most incredible gift you have given us. Thank you for buoying us up in all these ways.
And if you have days when you feel like me, undeserving of so much love, remember how God loves you and nothing will ever change that. He will bless you as you need and always beyond your comprehension! I promise that He does and that it will all be worth it, that you are always worth His love and the love anyone gives you.
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 tonymeans.org.
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!
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.
Thursday, September 8, 2016
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.
Tuesday, September 6, 2016
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.
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.
Monday, August 15, 2016
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!
Friday, July 15, 2016
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.
Tuesday, July 5, 2016
A picture is worth a thousand words
Just wanted to give a brief update on how Tony is feeling. He has completed two treatments of the drug Avastin and will be having a scan on July 14th. This is a big day for us because we feel we will have more answers to how his tumor is reacting to all the treatments since his surgery in March. The Avastin should have decreased the swelling in his brain making it easier to decipher the big question of "Is it working?" I'll definitely be blogging with an update that evening while I'm enjoying my ice cream ;)
Tony has been very tired. You can see it in his eyes and in his slow steps. Our kids are really beginning to understand "Daddy is really sick" because they now see it. We have just recently started giving them each their own day once a week to cuddle, watch a movie and rest next to Tony when he is in bed as much as they want. I'm hoping these are treasured times for him and the kids. Our little four year old Sophie laid next to him for almost four hours straight on her day. These kids love their daddy deeply.
I'm lucky to spend time with him each night once the kids are in bed. I rub his hands, his feet, his knees, and his very sore left arm and shoulder while he sweetly listens. We talk a lot about our kids, our family, his students, friends and those we love. We talk about the future, as well as the past and present. We dream of things to come and look back with gratitude and awe of God's hand in our life together. God really is so good to us.
Now enough of my blabbering. A picture really is worth a thousand words. Recently we had pictures of our family taken by our cousin Dawnette. Her talent best captures our family right now. I'm sure you will agree.
Friday, June 10, 2016
Where there is great love, there are always miracles.
Tony can really rock the beard. What a man.
June 9th was a big day for us. After dropping the five oldest kids at a friend's house for the day, we made the 45-minute trek up to Huntsman Cancer Institute.
Today was Tony's first scan of his brain since completing the combination chemotherapy and radiation three weeks ago. We both went into the appointment today with an idea of what could happen but unclear expectations of what came next.
As always, Amelia joined us for the day. Not only did we meet with Tony's doctor, but she had her very own appointment at Huntsman today! Amelia is a star at the hospital because as soon as we show up for a visit, the normally quiet clinic becomes a bustling arena with Amelia's coos and everyone's "awwws" as employees stand in line to hold her. She is such a beautiful miracle. While being passed around between all the nurses and coordinators in the clinic, a small cheek swab for DNA samples was collected from her mouth. In about six to eight weeks, we will receive the results for Amelia's genetic testing which will tell us if she is positive or negative for the gene (LFS) that Tony and three of her siblings have. If she is positive, she will join her three out five siblings each summer in having routine cancer screenings of her brain and body. If not, our little Lily (age 5) will think Amelia is even more her twin, as they both are toe heads with big bright blue eyes and matching elephant pajamas. The pajamas really seal the deal in Lily's eyes, and Lily is even convinced they have the same laugh :) I will post updates on Amelia once we get the news.
With Amelia entertained, Tony and I made our way to a room to meet with his doctors. The PA came in first to somewhat prepare the way for the news of the doctor. After a bit of small talk, the PA started pulling up Tony's imaging of his scan that morning and said "Your scans look horrible." Tony thought it was a joke but upon seeing the serious look on his face, he realized something was up. It is expected to have a lot of swelling and irritation in the brain shortly after radiation treatments, and with this scan being only three weeks out from the finish of those treatments, we expected some swelling. But this swelling really did look horrible. Tony's tumor is located in the right hemisphere of his brain, and it would be very fair to say that 3/4 of the right side of his brain had a lot of swelling and irritation. It was way more than what I was expecting. Our PA then turned to us and said all this enhancement on the scan could be from two different things (or a combination of both) that 1) the radiation really made an impact on his brain and as a result there just really was a lot of irritation, or 2) the tumor could be growing again. In his years as a PA, he had never seen anyone's tumor have growth while undergoing chemotherapy and radiation at the same time. It isn't impossible but definitely rare. He grabbed our neuro oncologist to give us his opinion and we were surprised to hear that he was unsure of what was going on. Could it just be swelling? Could it be tumor growth? Or could it be a combination? There is no way to know with a certainty by just seeing the image from the scan. The doctor (who I really feel is one of the best!) couldn't say with confidence that it was either or both. There is still so much unknown about the brain.
Where does this leave us now? Three options were presented. 1) Do nothing and repeat the scan in four weeks hoping irritation has subsided. 2) Wait as we try to get Tony approved for a clinical study in which he wouldn't be able to begin until at least three months out from the end of radiation treatments. 3) Opt to start a drug called Avastin which should halt any tumor growth and will reduce swelling, then re-scan the brain in five weeks to see what has happened.
The doctor, Tony, and I all agreed to begin Avastin treatments. We didn't feel confident in waiting a month without any treatments to see if any changes occurred. The fact that we are unsure if Tony will qualify for this particular clinical trial and going without treatments for another two months made us uneasy. So Tony will begin Avastin infusions next Thursday. I will take him for his treatments every two weeks where they will infuse the drug through an IV. The purpose of Avastin is to block the blood supply that feeds the tumor in order to stop the tumor from growing. Side effects should be pretty minimal, and it will give us an excuse to have a hot date for a few hours at the hospital every other week where I will definitely be bringing popcorn and a movie :) We will re-scan Tony's brain on July 14th to see what progress has been made.
Where there is great love, there are always miracles. As Tony was having his MRI scan this morning, I sat in the waiting room watching those around me. To be honest, Tony and I feel like babies at this hospital. Most patients are at a point in their lives where their children are grown or they are even retired. I watched as I saw spouses anxiously bounce their knees and twiddle their thumbs as they waited. A middle aged woman put her arms around her elderly father and told him that whatever they were facing, it would be okay because they were together. Nervous laughs and especially a lot of silent meditation was all around me. What were each of these families facing? What was in their future?
Faces often lit up as they walked past Amelia who would catch their eye and deliver the biggest "full body smiles" to them where she scrunches her arms and legs into her chest because she is just so very happy! Her refreshing youth and sweet spirit filled the room as I saw tensions begin to melt away a bit. To Amelia, life couldn't be better. She has no idea that her daddy is very sick. She is unaware that her time with her daddy may or may not be long. She doesn't understand the stress that an unclear future can put on a family. All she wants to do is love us and everyone she meets. Sometimes I can see in her face that she wants to say, "Please pass me around so I can brighten everyone's day!" Her beaming love is a testament to me. If we can love greatly, we can have great miracles. And maybe what she is trying to teach us is that the greatest miracle of all is that we can learn to love. Love is the most powerful force in existence. Love is what brings a family together and children into the world. Love is what pushes our souls to look outside ourselves and to help those around us. Through love we can be transformed as its literal power brings unending growth and improvement to our souls. And it is through Jesus Christ that the ultimate act of love makes it possible for us to achieve all these things.
Tony often says that the most frustrating thing for him in this life is the inability to express how much he loves others. I can so agree! I love my husband with all my heart and soul. Our children love him with such tenderness and purity. I have seen in our family and in our community that Tony is loved by so many.
Oh, how we all love you, Tony. With all this love beaming in our hearts, miracles have and will continue to happen. You are our miracle in our lives because you radiate love. And I still have hope that you can "tarry a bit longer" with us. God's plan is perfect because he loves you, I can promise that without a bit of doubt in my heart and mind.
Thursday, May 19, 2016
Comparison is the thief of joy
First off, great news! Tony finished his last treatments of chemotherapy and radiation yesterday! The staff at Huntsman will be missing him and will have a little less excitement in their work place now ;)
On June 9th Tony will have a brain scan and we will meet with his neuro-oncologist to discuss the results and see if there will be further treatments, etc. I'll be sure to post updates that evening.
Awhile back, Tony and I were driving in the car having one of our deep discussions, We do all our best talking when we are driving somewhere, especially back and forth from Salt Lake to home. Our discussion led us to bouncing ideas off each other about how to build self-esteem and how we can help foster divine worth in our children. During this conversation I made a simple remark that "Comparison is the thief of joy." As I said this, Tony looked at me with astonishment and surprise. He admitted that he was really impressed that I came up with this phrase and told me he was going to use it when teaching his students. He was seriously smitten with me, his jaw dropped and everything. I felt pretty cool for about 10 seconds, and then my face turned red and I laughed so hard I had tears streaming down my cheeks.
It is not my quote!
See, there was a pretty awesome leader named Teddy Roosevelt. It's his. Not mine. I'm flattered that Tony thinks I'm witty enough to come up with some great slogan but there's a fat chance that will happen seeing that I only get in one good joke each month.
President Roosevelt was a wise man. Comparison is the thief of joy. We talked about how so many low self-esteem problems rise from too much comparison in our society. Who can be the smartest? Who can make the most money? Who is the most athletic? Who is the fairest of them all?! Now, I think a little healthy competition is beneficial to us all at some points as it can be a motivating factor in bettering ourselves. But comparison is definitely toxic when the end result is only self pity, envy ore resentment.
I catch myself tormenting myself with the comparison game sometimes. Today I turn the ripe ol' age of 29. I've always felt that once I turned 30 (and wow, that is pretty soon!) that I needed to "officially" be an adult. You know, the adults who have half a years' worth of living expenses in their savings account, the ones who own their home, the ones who immerse themselves in PTA and coaching their kids' teams, the ones who have a 20 year plan and look like they are sticking to it.
Well, I am definitely no where near "adulting" in this sense. That nasty comparison game creeps up on me here and there throughout each year when I am reminded that many around me have these things and I don't yet. And it's something I've been playing a long time. I hate this game and I'm trying to burn it. Really.
What are the ways we can bury this comparison game forever? Tony and I discuss this often and we are beginning to find ways to play less often. He is really good at refusing to play. How does he do it?
1. Discovering the divine nature of our spirits. Simply put, we are God's children and that is enough. This alone, when truly taken to heart, can fill our souls with worth so we know and understand how unique and special and deeply loved we are individually to our Heavenly Father. That's pretty incredible. We don't have to "beat" anyone out to be loved perfectly by Him. We already are.
2. Studying and understanding the Atonement. You knew this one was coming ;) The Atonement of Jesus Christ was performed individually for you and me, one by one, with no rush or distractions. The Savior really does know our deepest joys and sorrows, and when we come to actually FEEL this, we know we are never alone when we feel battered down about ourselves or our lives. Turning to Christ allows us to know we are better than our circumstances and more than our flaws. He focuses on our strengths and never ever compares us to others.
3. Learning true beauty. Someone once told me that it was unhealthy to tell your children that they are beautiful and instead, to only focus on their character strengths. While compliments to one's character uplifts and helps others, helping someone discover their true beauty encompasses all these things. Instead of saying to your child (or to yourself in this case) "You are so smart" (which can feel fleeting as situations in life change) try telling someone they are beautiful. Tony tells me all the time how beautiful I am, and nine times out of ten it is when I'm getting ready for bed and I'm in sweats and have no make-up on. I am definitely not in my "A" game in my pjs. Although I am physically pretty in his eyes, he really is complimenting me on the beauty of my soul, of my attitude, of my motherly traits, of my ____, etc. Try telling yourself you are beautiful today! And start believing it!
4. Complimenting others. When we can start seeing the good in others and actually telling them what we enjoy about them, feelings of competition fade. We begin to love them personally and realize that anything good about others is not a threat to our own being. Celebrate when good things happen to other people, and feel concern and sorrow when disappointments happen in their lives. Any of Tony's students reading this will definitely attest that Brother Means is a great complimenter and it does wonders for his happiness.
5. Counting your many blessings. Really do name them one by one. It's hard to get started when you are down but if you think about the greatest blessing you have and realize what a difference your life would be without them, your whole being will swell with gratitude and humility. It's never helpful to count your blessings by saying "Well, I might not have this, but I have this" or, "At least I'm not dealing with this." Just name what you DO have and soon we can come to realize that we really are given so much.
I bring this up because lately it can be hard for me not to start comparing my present life to what I thought my life would be at 29 years old. I never imagined when we married almost nine years ago that we would be facing the reality of our mortality at such young ages. I never imagined that we would have to have some serious discussions about an alternative future to my fairy tale desires. I thought that if we worked hard and tried to constantly improve ourselves that we would be living in a cute white house with a wrap-around porch on a small farm, watching thunderstorms while holding hands with Tony on our porch swing as our cute kids jumped in rain puddles, with me in a beautiful dress and dutch braids in my long hair. I'd have the patience of Job and a smile on my face- always. And if I could, I'd always be cuddling with a baby on my lap :) My little dream may not seem like much but it's what I've wanted for a long time, and what Tony and I are working towards. It may not happen. Or if we are blessed with a miracle, our little dream could come true.
I'm terrible at comparing myself to my ideal self, seeing how I have many flaws and "should" have those flaws fixed. Every few weeks, I feel myself slipping into a destructive state wishing that the plans we had for our family didn't have to be on hold right now. No one knows what their future holds. No one really can be an "adult" and stick to a 20 year plan with no wrenches thrown in the works. "Adulting" comes when we can accept and embrace the plan that our Heavenly Father has mapped out for us, and I'm trying hard to do this each day.
Counting my blessings, I am deeply moved and humbled when I see what the Lord has given my family. We may have some difficult problems in our life right now but it is all trumped by the beautiful tokens of blessings we enjoy. And as I try to live the five steps above, my worth increases and I can more fully see myself and my family in God's eyes. In the eyes of our sweet Emma (who drew the picture above), our little family of eight is just perfect and happy as we are right here and now. We don't need a cute white house on a little farm with thunderstorms. Right now I have what is in our daughter's drawing and that is a dream come true. Cancer will never destroy our eternal family, it will only draw our family closer together and to God if we allow ourselves to stop our comparisons. I'm starting to experience the joy that comes in the absence of comparisons. I wouldn't change how God has blessed me!
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