This week we’ve got our first CAR-T timeline update. As of now our team is planning to have us move into Hopkins on December 19th to begin a five day course of chemotherapy designed to help prepare AJ’s body for the new T cells. On December 23rd she will have another bone marrow aspiration to get the level of leukemia in her body. This is required by the study she will be a part of. Finally on Christmas Eve she will get the infusion of CAR-T cells. After that we wait for any CRS symptoms to develop over the next ten days. The earliest we can be discharged is January 5th. We have been told to plan to stay locally until January 27th. There is a chance if she has minimal CRS that we can head home early, but it’s better to be safe than sorry, right? So last night we officially placed our request at the Ronald McDonald House for December 19th-January 27th. The team has told us that this timeline is subject to change if the cells aren’t ready, but as of now it’s what we have to go with.
Of course sweet Ava was devastated. Actually she’s angry and devastated. When we heard the news she told me, “no, no, no! I will be at home with my family on Christmas. It will be a day of rest for me.” I get it. I understand and I totally sympathize with her. BUT at the same time I’m also thinking let’s do this. The sooner the better!
This round of HDMTX chemotherapy has been brutal to watch. On November 14th a sent in my beautiful strong fighter for her first dose. On November 18th she got dizzy while washing her hands, tried rushed back to the couch to sit down and on the way fell flat on her back. She fell so hard she really hurt herself. Then the sores came. Her mouth and stomach hurt so bad she had trouble eating. She recovered just in time to go back this past weekend. Once again she looked brighter than I seen in a week or so. Now she’s back with me with the darkest circles under her eyes. The mouth sores are worse and she cries from the pain she feels in her body. I hate this and if doing CAR-T early will prevent her from having to go through anymore then I’m there for it.
Yes knowing we won’t be at home with our families for Christmas sucks. We have amazing family on both sides and they each know how to do Christmas right. Ava’s right to be upset to know she won’t do Christmas Eve mass and then party with her cousins past midnight. It will also be my first year without our Noche Buena tradition. On Christmas Day we have the yummiest brunch and mimosas with Kevin’s parents. After eating way too many blueberry pancakes we head back home to sleep. I’m definitely going to miss the pancakes and mimosas. My thoughts were we can have Christmas anywhere as long as we five are together, where we celebrate won’t matter so much. I explained we could move Christmas up or back whatever AJ wanted. She still won’t talk to me about that. The few times I’ve brought it up she burst into tears.
Now it would be a lie to say I also didn’t bawl when I read the timeline of what this treatment will require. I don’t want to leave Ellie and Kohen for so long. Though they will be with us at the Ronald McDonald House until it’s time for them to return to school in January I don’t like the idea being away from them for weeks at a time. I’m considering seeing if we can get them from school on Thursdays and have them in Baltimore through Sunday. Kevin and I could take turns hanging with them and showing them around Baltimore. The idea of leaving my mom for a month is equally hard. There is absolutely nothing she hasn’t stepped up to do for us the over the last five months. She’s been the most amazing caretaker and grandma ever. We couldn’t have made it this far without her support. Having her live with us is a God sent.
Then of course there’s knowing I’ll be leaving my students for up to a month. That also sucks. Knowing that my main non family support system, my friends at school, will be in so far away as we deal with this period of treatment scares me. My Mustang family has truly carried me through this. So many days my friends have held me, listened to me, checked in on me. They’re the ones who stopped by unannounced just to cheer us up. They send things to brighten Ava day, drop of things their own children have made for her and tell me to keep going. They get that I don’t know how to just ask when I need something so they just do something. They do whatever they think we need. They’re always right. These are just some of the many reasons work has been so key to us getting through this. Day in and day out this special group of teachers have carried our family through the ups and downs of treatment. When we go it will be up to us. I won’t have them next door, in the lunchroom, or after school to discuss my fears with. They have been my safe space.
Then there’s this fear that I may have to do this alone. What if Kevin’s request for teleworking from Baltimore isn’t approved? Though his team and supervisor have been amazing they may not be able to grant such a long period of telework. Then what? How will we deal with being away from Kevin for longer periods? Throughout this nightmare we’ve grown so strong. He is truly part of me. Yes I’ve learned that we don’t need to be together to be of one mind. We have been able to support each other through this and always kept our goal as the number one motivator. When you have “get her cured and healthy” as your common goal we tend to think more alike, act in the same ways, and arrive at the same decisions even when we’re not together. So I know we’ll make it, but I don’t want to have to try.
So yes I get why Ava is angry and I get why she’s so sad. But all the hardship and inconvenience will be more than worth it
if when she is cured and healthy.
Friends cancer has taken so much from us. It’s taken so much from Ava. She has very few friends, doesn’t know what high school is like, can’t go many places, and the only people she feels close to are her cousins and God sisters. She was ready to party it up with them this Christmas. Right now to Ava it feels like cancers also taking her Christmas. That’s understandable. But to this mama it feels so amazing to know that on Christmas Eve, the day celebrates the long arduous journey that Joseph and Mary took to find a place to give birth to our savior, my baby girl will be receiving the cells that can save her life. Now this may most certainly be a stretch, but to me it’s further proof that God is with us. He is in this situation with us, and He is going to cure and heal my sweet Ava.