Marshall's music, t-cells, t-shirts and more

Wednesday, April 8, 2015

Fight on! Round Four

We have been putting off and dreading this, but Marshall's leukemia is back for a fourth fight. This relapse hit us hard. Even doctors and nurses thought Marshall was cured and weren't running blood tests on him. Similarly to his other relapses, we knew before checking in due to pain and night sweats.

The remission only lasted five months this time so being back in the saddle so quickly has put a lot of stress, financial burden and physical burden on Marshall. We are fighting every day for a plan! For a crack at this t-cell thing again. Usually, the Philly doctors would not try again, but Marshall's case is unusual in that he was accidentally in complete remission before they gave him his t-cells and he had no cytokine storm. We flew to Philly and yes! His doctor thinks it's worth another shot! It's a lot more complicated than that though. The FDA is regulating this trial and in order for us to try the t-cells again when Marshall is not in remission, the FDA has to be petitioned and a whole new protocol for Marshall has to be written. So as of now we are trying to buy him some time for all that to happen if possible. It's a little tricky with an aggressive, chemotherapy-resistant leukemia.

The plan is now high dose chemo and blinatumomab to try to keep the disease at bay. The blinatumomab and chemo have been really hard on his liver and we had to stop treatment to give his organs a break.

We are very happy that he can try the t-cell therapy again, but getting there is proving to be difficult. Marshall's body is soooo tired from his long fight and is definitely more beat up and not as
up-beat this round. We are trying to distract ourselves with other happy things and not let cancer take over every moment. It's a bit hard when you are in a hospital for weeks, but we have faith this blinatumomab can work again and that Marshall can get through albeit with some bumps and bruises.

Philadelphia collected his t-cells for a second time because the way they administer them is being done differently: in 3 different doses, starting with a smaller dose and ending with a larger. Marshall had one small dose- 1/10th of the units they initially planned to give him. We also have faith that this immunology could still work! If it does not, our back up plans could be stay on blinatumomab until it stops working or even try a haploid transplant. Marshall doesn't know how to give up! He is fighting on and has all my love and support.

Our wonderful friend Matt is helping us start a fundraiser: "Give 'till you FEEL it". He's amazing and we are amazed by our family and friends that have stuck by our sides through the years of difficulty and burden. They have helped us lift this heavy load and are truly workers of Christ on the earth as they have helped make our heavy burden light. I loved during general conference when a speaker said people are sent from God and ordinary people are working as God's hands when they make ordinary gestures.  We are so grateful for the people who have truly born the burden with us. It's hard for me to see some friends disappear with time. The road seems to get a little more lonely for me each relapse. It may be because our story is getting harder to tell and live. I'm reading a care giving book right now that suggests that people just don't know what to say or do. It's hard to relate to a difficult journey sometimes when you're trying so hard to keep yours happy and full of life and light. I understand that some people simply process it differently or just can't process it. Most days I wish I could ignore it all and not have to deal with it too.

We did have one marvelous day on Friday, March 13th. Marshall received the honorable Nicholas E. Calleluori award for being relentless. You can read about it and watch his speech here:
also the video that was made while we stayed at Nick's house: His facial paralysis has gotten much better and is mostly just on the left side now. We LOVE our HEADstrong family! Check them out by clicking here: HEADstrong. That night gave us the determination to battle on for the fourth time.

Marshall was able to fly to Texas and re-baptize his brother Jordan which also put us on cloud 9 that weekend! What a miracle! I love the hope that comes from the atonement. Marshall is going through so much physically now and has been for years. Literally, he has been battling death from the front lines. Through the atonement, there will be no scars. Sometimes my cares for this world and battle have choked out God's words and promises and I really need to remember to focus on those at times. Marshall and I (especially Marshall) are very tired this round. We are reaching for and trying to grasp any light we can find no matter how dark or seemingly hopeless this cancer can be. We are trying to find our strength again in that light. It was so wonderful to see friends and family come out to support us at Chili's a couple nights ago! You help us dispel our fears and have some peace. I loved Bednar's talk about being empowered to hush our fears! Some of that peace can only come through Christ and the hope for a resurrection and eternal life. Many people have asked me how I have not gone crazy yet. I find that strength and stability when I believe in Jesus and trust in Him. Even when our lives are not ideal, we have promises in the life to come.

I still trust that God is the architect of our story and hope to help future cancer patients by going through this trial.