I know it sounds crazy, but hear me out.
While I would never wish a leukemia diagnosis on a child or anyone for our family it turned out to be a blessing. And definitely I’m not saying I’m grateful Ava had to endure of this for us to reach this point. I actually carry a lot of guilt that she had to go through this for us to get here. What I am saying is that purely by the grace of God, this horrible diagnosis didn’t break us. It actually brought us closer. I’ve spoken to my mom about this a lot. Our marriage has never been stronger. My kids have never been closer. We have never been so faithful or close to the Lord. We now know those who are true friends and those who not up for the task of loving a cancer family.
So much good has come out of such a horrible thing and I’m so scared to lose that. I believe the main reason we were able to come out better is because we did it together. We were all included in Ava’s treatment. Ellie and Kohen spent a lot of time and the hospital and clinic with her. Though they weren’t physically going through it they were involved and they were included. Last year when we had to spend Christmas in patient, my entire family came to have dinner with us on Christmas Eve, all the cousins were there. On Christmas morning all of Kevin’s family was there to celebrate with us. Ava says it was the best Christmas ever. Actually, we’ve never alone in this journey. Many of you visited us and spent time with us at Hopkins or at home. You brought us meals, purchased gift card and prayed for us the entire time. Maybe that’s just life before COVID-19?
This is what has me most terrified as we prepare for the possibility of doing it all again. A bone marrow transplant during COVID-19 would mean only one of us could be with Ava. For the first 30 days inpatient and the next 70 in Baltimore only two of us will be there. As I understand it she would need to be within a certain number of miles for the first 100 days. Our house is outside that limit so Ava and I would basically move to Baltimore for a little over three months. Kev would probably not be able to visit much because he couldn’t expose her to covid germs. This means we’d miss Ellie’s birthday and Kohen’s birthday. Ava would be away from her dad, siblings, and grandparents for 3 months. Kohen and Ellie would be away from their mother and sister. I would be away from two my kids and husband. Transplant during COVID 19 will take away what made treatment bearable the first time.
In my core I know God can take any situation and make it beautiful. I’m fully aware He can take anything and make it a blessing, but I’m still scared. I’m scared I won’t be up for the task. I’m scared for my family. More than anything though I’m scared for my girl. Although we got the great news that her CAR-T cells are still hanging around and preventing her from having B-cells her oncologist fear the genetics of her cancer has changed and CAR-T is no longer an effective treatment, leaving us with transplant as the next step. There is so much riding on tomorrow’s bone marrow aspiration. Depending on the results we could go one way or another. I’m trying my hardest not to be what my friend Porsche’s sweet father taught is called Worst Case Scenario Person, WCSP, but y’all the struggle is hard. I’m praying so hard and fighting it so much but the fear that lives in that worst case scenario situation is so real.
I use to think the loss of a child was the worst thing ever. I know if God takes a child they go straight to Heaven. I feel certain of that. What parent would be grudge that? No the ultimate tragedy is losing a child and not going with them. Knowing you have no option, but to continue life without them. That is the true hell. That is the fear I carry with me. That’s why I fear transplant so much. I’ve read too many stories of parents living my nightmare. I follow so many cancer parents who are at this moment are so close to living my worst nightmare. So instead of asking you for prayers for my girl I ask that you pray for these heartbreakingly young warriors.
Tomorrow when Ava and I go with for her BMA we will do so know no matter what happens He’s got this. We just need to be open to the blessings He’s planning.