Eli came home from the hospital on January 26, 2018. He no longer needed breathing support nor his feeding tube. He is doing really well. When Eli was born he weighed 4 lbs 10 oz. He now weighs 6 lbs 6 oz. He is drinking formula as Brianna is not able to breastfeed and we decided this would be easier anyway. We absolutely love having him home and it is so wonderful not having to travel to the hospital twice a day to see Eli. He is fed every three hours 3, 6, 9, 12 and repeat. Sometimes it feels like we are a broken record with the schedule but he is doing great! I have the lucky job of the 12 am and 3 am feedings which I don't mind too much. I am tired at times but it does allow me to spend some precious time with my son in ways that I wouldn't be able to otherwise. He is sleeping well and adjusting to home life very well. Watson loves having his baby brother around. Unfortunately he has been slightly sick ever since Eli came home so he hasn't had the chance to hold him just yet but we will get there and I am certain that he will love it. Life seems almost normal.......
Brianna had an appointment with her Medical Oncologist Dr. Jenkins on Thursday January 18, 2018. Prior to that appointment, she went and had repeat MRI to follow up with radiation and determine the next steps. For the past several months, there have been conversations regarding which direction Brianna should take with her treatment. There has been discussion regarding chemotherapy as on option and alternative treatments as another option. Brianna was weighing the options for a long time and trying to decide between the two. The main two treatment options she was considering were Temodar (Chemo) or Protocel (Alternative). Temodar is the standard treatment that the physicians would suggest and Protocel seems to be the standard treatment that any alternative consumer would suggest. Temodar is a chemo pill that would be taken daily for 5 days in a row and then have 23 days off with no chemo and then repeat. It is typical to continue this treatment regimen for several years. Temodar is typically considered maintenance chemotherapy and over time although it may prolong the progression of the tumor; it typically doesn't last for more than two or three years. Protocel on the other hand, is a liquid that is taken every day, five times a day. There are no clinical trials for Protocel but many people have shared their success stories from using it. It is typical to continue this treatment until it no longer works. These are the two she was mainly deciding between although there were others.
While meeting with Dr. Jenkins, we were informed that the MRI showed some minor growth which could mean a couple of things. It could mean that the cancer continued to grow during the radiation treatment or it could also mean that there is simply some swelling still. Dr. Jenkins said that the MRI won't be a tell all and that the treatment would tell us in real time what is happening. However, he did inform us that without the chemo followed by radiation that the survival rate for 2 years is roughly 10% and chemo would only improve that to about 27%. He then shared with us that regardless of choosing chemo or not, the survival rate for Brianna's type of cancer would be about 5% at 5 years. This was a big shock for us all. It is hard to believe all of this is happening but we continued to ask questions and we all continue to love and support Brianna.
Brianna had a tough decision to make and she went back and forth a lot but she ended up deciding her treatment plan as she felt was the best option. She has decided to start with Protocel and see what it does for at least 6-8 weeks. She wants to reevaluate then. If it is working and she feels like she is improving, she will continue the Protocel. If she feels it isn't working or she feels like there hasn't been much improvement her plan at that point would be to switch to the chemotherapy. I love her and support her decision as I hope each of you will do. I know that making this decision was one of the hardest choices she has had to make.
I hope more than anything, as I am sure each of you do, that Brianna will be healed. I hope that she will overcome this and I hope that we will continue to raise our children together. Most importantly, I hope that Brianna is happy and feels loved. I know that God lives and He is truly a God of miracles. I know if it is His will that she is to be healed, then she will be. I also know if He has other plans, our family will continue to put our trust and faith in Him. Sometimes we don't understand the reasoning or understand the motive behind different trials in our lives but I do know that if we put our faith and trust in God, that we can overcome all things.
I recently started reading a book "All These Things Shall Give Thee Experience" and I came across this quote, "The myopic and despairing soul-cry and question, "If there is a god, why does He permit suffering?" reflects a basic failure to understand the very nature of life with its components of chastening and suffering. And as for that question, it is not difficult to imagine who originated it, however understandably sincere some are who now raise it. The question strikes at the heart of Father's plan, because it comes from him who rejected that plan!". Our Heavenly Father has a plan for each of us to return to live with Him eternally. We don't always understand why that is sooner for some than others. I am not saying I think it is Brianna's time, but if He is calling her home, this is His plan and I will trust in Him. Another quote that I read, "Furthermore, since there was no exemption from suffering for Christ, how can there be one for us? Do we really want immunity from adversity? Especially when certain kinds of suffering can aid our growth in this life? To deprive ourselves of those experiences, much as we might momentarily like to, would be to deprive ourselves of the outcomes over which we shouted with anticipated joy when this life's experiences were explained to us so long ago, in the world before we came here." It is easy to look at trials and tribulations and to blame God. Brianna and I continue to look towards God with hope and with thankful hearts. Through our trials, we are drawing closer to each other and to our Father in Heaven. We are able to more fully understand joy because we are experiencing the sorrow. We continue to trust in Heavenly Father and live each day to the fullest. It would be easy to give up or to fear the unknown but we choose to live and love. There are moments when we feel tired and weak but in those moments we are lifted up by God and often it is through each of you that we feel uplifted. We continue to ask for your support and your prayers as that is what allows us to continue to have hope because we feel that strength. May we each strive to put our trust in God.
We know that God lives and loves each of His children. We are all His children and He has a plan for each of us to return to live with Him. We know that Jesus Christ lives and it is because of His great love and sacrifice that we can each be uplifted through our trials. We know that we are here to gain experience and to truly learn joy. In order to truly understand joy we must feel sorrow and suffering. We know that God will never give us more than we can handle and that through our trials we can become who Heavenly Father wants us to be. Often times this requires some stretching. "The soul is like a violin string: It makes music only when it is stretched". Heavenly Father sees our inner potential and as we continue to trust in Him and put our faith in His plan, we can become who He intends us to become. We know that our family is Eternal and that no matter how long or short this life may be, we can each live with our families again after this life. We are forever happy and grateful for all we are given and we will continue to find the joy in all things we are given, one simple day at a time.
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