You hear life is a roller coaster; well there is no other way to describe the week Luke has had. This is life as we know it on Friday the 13th.
Last Sunday we drove to KC Sunday arriving at 8:30. Luke was not looking very well and had a temperature of 103.4F. The leukemia rule is over 101F go to the ER.
We reached out to our contact at Children’s Mercy Hospital (CMH) that were running the clinical trial Luke came up to see if he would be eligible. We were told to take Luke to the KU Med Center as the CMH ER would not know what to do with a 25 year old child. Luke was at KU Med at 9:30. He was admitted and had a bed 5 am Monday.
He was tested and cultured to death. His blood counts were low but not crazy low. Labs found two viruses RSV and para influenza and concluded symptoms were virus and not leukemia related and began antibiotics.
The folks at KU were made aware of why Luke was in KC and when his temperature came to range the discharged him and we went over the CMH.
We met with the CMH staff responsible for the study beginning Tuesday. They had him scheduled for a battery of tests required for the trial protocol. . Unfortunately because of the protocol requirements CMH could not use the KU testing so they had to do their own CT’s MRI and LP
CMH also did a bone marrow. Good news was no blast cells showed up in the bone morrow the bad news was the trial required a candidate to have an active disease and show at least 5% blast cells so based on the bone marrow test run Luke would not qualify for the trial. . .
That was not entirely unexpected as previously Luke had been very responsive to induction chemo. It was surprising in that he only had 2 weeks of what is normally a 4 week induction protocol.
This week Luke had multiple LPs, CTs, MRI. The leukemic tumors thought to be causing is liver and headaches have shrunk. Yesterday his hemoglobin was low and he got two units of blood.
If Luke’s bone marrow shows active leukemia he will qualify for the protocol. The consensus of the doctors is it is not a question of if the leukemia comes back but when. In anticipation of the leukemia coming back Luke is still going to have his t-cells drawn. They were going to try to do that Friday but he has been plagued with a headache since before he got here and has not been able to keep anything down since last night so t-cell extraction is rescheduled for Tuesday next week.
Well things changed. Luke received and email this morning telling him that when they decalcified and tested his bone marrow they found 50% blast cells. Blast cells are usually identified using a flow-psy test and slide smears on the spinal fluid and neither showed leukemia cells. The final test they did was to decalcify the sample and when they did that they saw what he called globules of blasts as opposed to single cells. Doctor Myers only comment was Luke knew something was wrong and he was rights. Seeing leukemia agglomerate like they saw in Luke’s bone marrow was rare.
Luke will have is t-cells drawn nest Tuesday and head back to Houston. He will likely continue to get chemo until his t-cells are modified and ready to be reintroduced into his system. That should be 3-4 weeks after they collect his t-cells.That is if for now. T-cells taken next week and modified cells given bask in early April.