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.