Trust.
About a year and a half ago I was laying in the hospital room with Ali. She was awaiting her second Car-T therapy trial.
In simple explanation, Car T therapy is where doctors collect the T cells from one of your arteries and re-engineer them, making them into cancer fighting cells. Once re-engineered, they are then placed back into your body where they seek all cancer cells out to destroy them.
When we had learned the cancer had returned, our Oncologist suggested we participate in a trial that both Stanford Hospital and NIH in Maryland were offering. Although we did not want to go out of state for treatment, we were grateful for options. We were told that the plan would be to fly down to whichever hospital we chose, harvest cells, and in one week's time, return to have the cells put back in Ali's body for a hope at a cure. After discussion, we chose to go to Stanford Children’s Hospital since it would be closer to our extended family that lived in California.
We flew out May 13, 2019 to California. After Ali's cells were collected, we decided to fly home and wait the week out in Utah while the lab regenerated her cells. At this point, the Leukemia cells were 74% of her body. It was a pretty scary spot to be in medically. The day after we arrived home, the hospital called and said there was a problem.
My first thought was, “Oh no! What could have happened?” You can imagine my anger when I had learned that the “problem” was that the air conditioner broke in the lab so they closed for maintenance. Because of this, everything was put on hold. Her newly collected cells would now need to be frozen as they awaited maintenance to fix their facility and start work again. They estimated about 6 weeks.
All I could think was, “What!? My child’s life is in danger because of air conditioning?” I was so mad! How could this happen? To make things worse, no one seemed to be apologetic! Did they not care? How was Ali going to be able to hold on? The whole thing was so unfair. I beat myself up thinking, "If only we had chosen the other hospital, this never would have been an issue." But now it was too late. We had to wait it out. Our oncologist in Utah suggested we give Ali a lower dose chemo as we waited in hopes of keeping everything at bay.
More chemo pumped into my child's body over air conditioning?! No. This isn't fair. But it was our only choice.
While waiting, Ali was admitted to the hospital June 1st for a fever that lasted over 30 days. Every day she got worse. As the cancer got worse she would only awake for about 30 minutes each day. Watching her fight for her life was excruciating.
One night, I laid awake feeling so sorry for myself. How could this be our life? This was torture! I felt angry, sad and forsaken. And here comes the question...One of my journal entries I wrote,
-"I guess it basically boils down to if I trust God or not. I want to say that I'm faithful enough and my answer is yes. But when I think of trusting someone, I think of trusting them to not hurt me. And that hasn't been the case nor do I feel that will be the case to come. There is always hurt in this world. That is a part of life. So how does one trust someone when they know at some point in their life that person will cause them pain?
I know Heaven is supposed to be your reward and all will be made right in the end. But will it? Will we look back at our pain on Earth and truly say it was worth it? That is what Christ has promised right? "I never said it would be easy, only that it would be worth it".
Tell me how to have that kind of faith? Tell me how to feel the Spirit and just KNOW." -
Wow...what a hard question. Now looking back, I am even more grateful to Heavenly Father for not taking Ali home at that time. I'm grateful for every moment I was given with her but also for the fact that the Lord knew me. He knew I had so much learning to do. I would have been so angry with Him. So what has changed?
Since then, I have learned that He does not give us trials to hurt us. Trials come in all different forms. Some from choices we have made, some from choices others have made, and some just from being human. I cannot be angry with God for letting me experience an Earthly life. Trusting Him does not mean you will be without pain. Trusting Him simply means knowing that He will carry you through as you reach out for Him. Trust is built by recognizing His hand in all things.
Ali had that kind of faith. She knew Him. She loved Him. She saw all the good He brought into her life. She had said so many times when asked if she was angry with God, “No, He has been there for me through all of my trials.”
We snuck Mylo in almost every day to see Ali in the hospital while she was in Utah.
