Chugging Along

Chugging along. This is what we say when we are asked how we are doing nowadays. Our updates are becoming further apart as time goes on. This doesn’t mean nothing is happening in the world of cancer with Aspen, it just means we’re focusing on enjoying life at the moment, and not taking many breaks. 

Recently, Aspen had bilateral bone marrow biopsy and a lumbar puncture to look for evidence of leukemia. Like many of the other studies, this one yielded a “suboptimal sample,” but it also doesn’t show any evidence of disease. The term “evidence of disease” is used because the test is only so accurate, up to one-thousandth of a percent, and disease could still be lurking, we just didn’t find it. For now though, we’re taking the results as Aspen being cancer-free and she is living her life to the fullest extent possible. 

With the recent biopsy results, we were presented with a decision point in Aspen’s treatment plan, what do we want to do for the next few months? After consulting with Aspen’s care team we agreed that it would be best to move forward with using the remaining two doses of donor lymphocyte cells. The cells are a use it or lose scenario, either use the cells now or they’ll be disposed of because they won’t be of use if Aspen relapses again. She received one dose just before labor day and will receive her final dose of cells sometime in early-October. At the same time she will continue to receive STRO-002 for the next 6 – 9 months, possibly up to a year. 

Our family was featured in Newport Neighbors for Pediatric Cancer Awareness Month!

You can read the full article Here.

Again, the goal here is curative. We’re trying to induce graft v. leukemia disease, a byproduct of graft v. host disease (GVHD), but there’s no test to determine whether it’s actually happening. During a recent meeting with Aspen’s transplant team, Ashley asked “are we hitting her hard enough with the cells? Every other child we have seen who does well, has had Graft Vs. Host Disease.” The doctor told us we don’t necessarily need to see a reaction for the process to be working. In fact, if she never manifests signs of GHVD that’s good news, because it’s one less thing to be treated. We are hesitant to even allow our minds to think we have achieved graft vs. leukemia, sometimes even “good” news doesn’t seem real anymore. 

Even with the good news, each day brings a flurry of emotions and questions to work through. One constant emotion is gratitude; we are grateful for each day that Aspen shines bright in our lives. Yes, Aspen’s disease is currently being managed, but we’re also not in denial about its unpredictable nature knowing that it could come back at any moment and destroy everything Aspen has overcome. It is a weird space to exist; you have to give your kids your best so they can thrive, but you also know a disease could live inside one of them and will do its best to kill them. Cancer will take over your life, but it doesn’t replace other obligations, it’s just added to the mix, and commands your attention while you need to generate income, pay bills, fix your house, take the kids to their activities (soccer, equestrian therapy, STEM lab, birthday parties, etc.), take care of your own health, and make all the memories while we’re all together. At times, it’s hard to process it all, so we just chug along. 

We chug along, because things can change in an instant, our lives could be flipped upside down, again. Sure, any other family living right now can also have their lives changed without notice, we’ve been there. However, we’ve been served, we’re on notice that at any moment the shit will hit the fan. One thing we’re trying to do is have Aspen’s central line swapped out for a port. Managing a central line is fairly simple, but also nerve wracking, e.g. if it gets infected the consequences can be dire, so yeah, no pressure. There are also fun things like when the line breaks like it did during a recent clinic trip. While trying to flush Aspen’s line one of the nurses encountered a blockage in the line causing pressure to build up and blow a hole in it, again. Unlike last time where Aspen ended up having conscious sedation via Ketamine to remove her line in the emergency room, Ashley and Boma were at clinic and able to go over to Children’s Hospital OR to have it successfully repaired. That day, like most other situations, Aspen was stronger than anyone in that room and didn’t really care what was happening as long as she was with Ashley and Boma. To be clear, PTSD is a very real thing. . 

Aspen made a bed on her playmat, while receiving STRO-002 through IV.

We don’t know what the future holds for our family and holy shit that is so scary. We often talk about living in the moment as a family, but how can we unless we are hopeful for the future? It is a lot easier to live in the moment when you know you have many days ahead and they aren’t numbered. We have decided to start saying “let’s live in today,” because anything further than today is too scary for us to imagine. What we do know is that Elliott started kindergarten a couple weeks ago and we are all adjusting. He tells us he likes school, Science and all the outdoor play seem to be his favorite. Aspen rode a horse for the first time last week, and she cried when she left the farm. She has a huge heart for animals. We will continue to soak up every bit of life and love our children give on a daily basis.

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