We Are Home! For Now...

We arrived home in Woods Cross Friday night without signing the CART-19 (chimeric antigen receptor T-cell) protocol. Right before we flew east to Pennsylvania a man had died from the treatment so the trial was on hold. We could feel the tension from the head research coordinator as we sat down in apheresis for Marshall's vein consultation. The room was freezing and the nurses checked and double checked Marshall's arms to determine if they would be able to collect what they needed. The first nurse needed a second opinion. We were becoming discouraged because the last time they tried to collect his blood in Salt Lake they had to poke him six times. This is not uncommon for patients who have been through so much. Marshall has had 2 stem cell transplants and he's had a central line twice, but each time he has relapsed his central line had already been removed months prior to the relapse, so he has been poked and prodded up the wazoo. And that was just for small blood collections, not a 3 hour T-cell collection. The issue was that because the actual trial was on hold, Marshall had to sign a different protocol. The original protocol would allow for a patient to get a temporary central line if they could not get into the patient's receded veins. Because he could not sign the correct protocol they had to use his arms only and did not have the option of the line in his chest.

Everyone's prayers and fasting must have worked because the next day it took one poke in one arm and one poke in one hand (on the right arm they collected and on the left hand they gave back what they didn't need after centrifuging out the T-cells) and 3 hours to get the T-cells they needed (even after he had been on hydrea since he relapsed)!

only one poke on each side! Hallelujah

the aparatus for apheresis

A super nurse in apheresis prayed out loud with us for quite a while and  it was so awesome! We were so grateful to have Marshall's mom there with us as well so we didn't have to do everything alone.

Felicia was so caring

These T-cells (top yellow line) are being reengineered with a virus to fight every cell in Marshall's body that has a certain receptor (CD19)

So now we are home waiting for the T-cells to be reengineered. It takes 3-4 weeks. In the meantime Marshall will be doing a new chemo to keep his leukemia from taking over and causing him too much pain. He may have to fly out once in that time to sign paperwork and there are a few more tests to be done to insure he is in the study now that it has opened again. We are looking for options to stay near the University of Pennsylvania hospital. Dr. Porter said to plan being in Pennsylvania for two months. We really would like to have our son with us because that was one of the hardest things for us last year in Houston having to leave him behind. But to make that work we will need another caregiver along our side for the times he is not allowed on certain floors or in certain places. We are so grateful for all that have reached out to help us again.

We received a beautiful portrait of the Savior that my Uncle Daryl painted. He wanted to depict Christ more with Jewish ancestry than the Scandanavian approach many artists take.

He painted it mostly on Sundays and it holds such a special and significant place in our hearts during this difficult time. The only way we will find the strength to fight the leukemia again and be separated from our support system again is to rely on His power, the sacred power of the atonement. Just as Elder Bednar discussed with us in our home, we will not find the ability within ourselves, but only from the enabling power of the atonement. My uncle who painted this is acquainted with his own griefs and sorrows and yet he gives constantly. There is one thing that can bring us all together. AT-ONE-MENT. Whether your trial be loss, grief, depression, temptations, addictions, abuse, disease, or any physical or spiritual limitation. If we but rely on each other and the Savior to heal, help, forgive, that is where we can all be one. Let Him in our hearts. He suffered so that we did not need to suffer as much. No matter the outcome of this trial, our hearts will be stronger because of Him. May heaven pour down it's blessings on your lives like it has on ours.