I know GMOs get a lot of bad press and when it comes to food we don’t want them in our bodies, but my sweet Ava is about to become a GMO and I couldn’t be more hopeful. We met with Dr. Cooper yesterday and enrolled Ava in the CAR-T study. It wasn’t a super long meeting, but we left with information overload. We already understood the medical process and the side effects so that wasn’t what got us it was the continued tentative plans for our family.
The CAR-T process itself is pretty straight forward. Monday Ava will go in to get her heart checked and draw pre-op labs. On Wednesday she will arrive to the OR department at 5:30 to have a new line put in. They will use this line to hook her up to a large machine that will draw her blood, remove her T-cells and then return her blood to her. This process is called apheresis or pheresis. It will take about 4-6 hours and we were told the main side effect is boredom. Since it’s a long day she will stay overnight and then be discharged Thursday morning. On Friday she will go back for a low dose of chemo. This is also the day they will ship her T-cells to the company that turns them in to CAR-T cells.
The process of creating CAR-T cells takes about 4-6 weeks. During that time she will continue to go in on Fridays for a low dose of chemo. The goal of this chemo is to keep the .34% (updated number from trial headquarters in Seattle) leukemia she has left and not let it increase. At some point as early as December 18th or late as December 26th Hopkins will get her CAR-T cells back and we will go inpatient.
They like to check people in on the later half of the week for a specific type of chemotherapy that will allow room for the CAR-T cells. The day we check in and get the first day of chemo is known as day -5. On day 0 they will do the CAR-T infusion. They like to do this on a Monday or Tuesday. They will then monitor her in the hospital for the next ten days. Typically once the CAR-T cells begin doing their job there is a lot of inflammation in the body that causes extreme flu like symptoms. The CAR-T cells are there to attack and destroy all the leukemia cells it’s like a mini firework is set off each time one is destroyed. The fireworks trigger inflammation and the flu like symptoms. The short name for this is CRS. Dr. Cooper feels Ava may not have bad CRS if she gets any at all because the amount of leukemia cells in her body is so low. CRS normally occurs from days 1-5. They will also monitoring her for temporary neurological affects like confusion or seizures. They believe this is also related to the inflammation and it is also not permanent. After we get through days 6-10 if all is well she will be discharged.
After she is discharged she needs to be within a certain distance of Hopkins for the next 20 days. Unfortunately we are right on the line of being to far if we come home. So depending on how her first 10 days after infusion go we may need to move into temporary housing in Baltimore.
On day 28 they will do another BMA and see if the CAR-T has done its job and she is MRD negative. CAR-T cells look for the genetic mark CD19 and destroy cells with the that “flag”. Well all B cells carry that flag so that they’d like to see is for Ava to not have any B cells left. They’d like her to not have any B cells for at least 6 months. Ideally she never regains her B cells and thus can never have B Cell Leukemia again. The next best thing is that once the CAR-T cells do die off it’s been so long since her body has no memory of the leukemia and her B cells are normally. Like the 99.5% of her B cells are now.
Since she will have no B cells she will be getting IVIG infusions until they come back and potentially for the rest of her life. If the CAR-T works as it should this is the only thing she will need after being release from the hospital. She will no longer get chemotherapy and avoid all the toxicity that comes with it.
As you can see there are many reasons we have chosen this path and are full of hope, and yet there are no guarantees so we must be guarded. My gut and my heart tell me this is Gods answer to my prayers. So for now I’ll hold on to this.
What are we currently trying to figure out and get comfortable with is the logistic. For Ava it’s the potential of not being home for Christmas. All she wants is Christmas Eve with the cousins and Christmas morning breakfast with her granddads blueberry pancakes. I don’t think she’s realized she’s leaving Wesley so we’ll have to deal with that when it hits. For Kevin and me it’s the idea of leaving Kohen and Ellie for up to a month. How do we care for Ava and make sure they’re not being neglected? We will splitting time between them, but we both feel more secure when we do it together. I’m also struggling with the fact I won’t be with Ava when she checks in next Wednesday. Since I have to save my days I can’t go to anything next week. I need to find a long term sub who would ideally speak Spanish. There is also a part of me who will miss my students and feels guilty for leaving them. Then I feel guilty for ever thinking of that. Of course there’s no comparison of who I need to be with more, but those 18 kids keep going too. Then I remember I also need to start all our Christmas preparations much earlier than expected. And of course in the back of my mind is the thought, what if? What if we do all this and it doesn’t work.
For now though I’ll enjoy having my family together and live in hope.
For those wondering how Ava’s is dealing with all this, she’s good. When Dr. Cooper asked what she knew about what was going on and about CAR-T she told her everything I wrote above. Dr. Cooper said we were done because Ava clearly gets it. As we were waiting on the elevator to go up to 11 S she pointed out the 8th floor NICU and said that’s where I’m going to work. My girls got plans and goals to reach. Leukemia will not stop her. Sure she may be need to be a GMO and a lot of God’s Grace to get there, but get there she will.
For now all she cares about is playing her new game Logo during family game night tonight.