Fentanyl Fun

We have had a grueling last few days. Marshall's pain has been overbearing. His pain comes from the leukemia blasts taking over his body and inflaming his bones. Particularly in his ribs, back, joints, and connecting tissue. The blasts have now cause pleurisy. This is where they irritate the lining by his lungs so badly that the lubricant that is usually there against his lungs and body linings has dried up and it hurts him to breathe very badly as well. He has been on a ton of pain medications as a result around the clock and still is in so much pain. It is also very painful to see him right now in so much pain. It hurts him badly to stand and breathe because of the pressure it puts on his bones and joints where the blasts are taking over. The leukemia is so packed in his marrow that they could not get any bone marrow when they biopsied him today. He is supposed to have over 5 percent blasts for the study in PA at biopsy time and I think he dominated that requirement. Also his lumbar puncture came back clean! That was also another requirement for the study. That means the leukemia hasn't made it to his spinal fluid that they can detect.

Marshall's line is now in his arm instead of his chest. He begged them to put it in the left so he could still strum guitar with his right and then they allowed me to watch the whole surgery.

Getting pumped full of blood and platelets (his own body wouldn't survive without this- thank you blood and platelet donors!) before his Philly flight.

Ok, ok. Because Marshall has been super doped up on drugs I wanted to record some funny things he has said today. After his bone marrow biopsy he looked up at the cute little Asian lab worker and said, "Have I ever told you that I just love your big, beautiful smile." She looked at him like a deer in head lights. Then he said, "my wife and I have been discussing eternity" [we were!? Maybe 3 weeks ago!] "and I wondered what you you think happens after we die?" Imagine all these sentences slow and drawn out and the technician looking at him like, "did he really just ask me this...". Marshall then immediately falls asleep after asking such a loaded question. Our cute lab worker was stuck in the room organizing the various blood slides and cores to take to the lab for further examination and results. So she answered the question to me. She explained reincarnation and how she felt that we will go somewhere but we do not know where. And that if someone in this life is really nice to you even if you are rude over and over, they probably owed it to you from a previous life when you were nice to them in a similar way.
Marshall also made the comment after they got 3 pieces of bone out of his back that he is a good, well I won't include that but if you ask me I will tell you.  Then our awesome nurse Tony was gathering up Marshall's chemo later and suddenly Marshall says, "we can't leave Tony, he's making us cheese burgers". Tony gets a puzzled look on his face like, where did that come from."
Now tonight he is lying there in his half asleep phase telling me how he was used as a slide for all the children as they were getting off the airplane at the airport and many other absurd things.


The above was written the week of May 17. It's now May 30th and Marshall is on a plane on his way from Philadelphia back to Salt Lake City with his brother Barry (thank you Barry for taking over as caregiver for a couple days!) He signed the protocol for the CART-19 study. So he is officially in. He also has a cold that he probably caught from his son. Even after we sent Kez to Idaho last weekend on the last day the doctor told me he would be contagious. It was so good to be able to go to Jenson's blessing and take family pictures. Marshall was weak and had to sleep in between everything and be on a ton of pain meds. But I was glad he was there so thank you Marshall for enduring. He actually kinda used family pictures as an excuse for the hospital to let him out a little earlier than they probably planned.

Elina and Kezman

Grandma's birthday

We found out that the patient that died on the CART 19 study (the reason it was on hold when we went to PA the first time) had contracted the flu right before his new T-cells were introduced into his body and that may have contributed to his demise. So we kindly ask that if you have been feeling ill please avoid our family for the next 3 weeks before we go to Philadelphia for Marshall's treatment. We are so tired of avoiding people, heavy crowds, and family gatherings but we must continue doing so at this point. We've done this before so please don't hesitate to socialize with us by online means (facebook, facetime, this blog, instagram, etc.) because we have walked that lonely road before and before the before.

Ready to roll out of bed and hit the Philly hospital every day in a few weeks!