No one ever expects that they will endure a journey that involves a child who is facing cancer. And even now, two months into Luci’s fight, it still doesn’t feel real.
Luci is a vibrant, fun, sassy 10 year old. When you ask her what she wants to be when she grows up, she will tell you, “I don’t know, I’m 10.” She will always keep it real with you but at her core she is a kind and loving person who wants to see everyone in her life happy and having fun.
Our first night in the emergency room she shared concern for me, asking if I was getting sleep, which of course I was not. And while Luci and I share our extreme optimism in every circumstance, this last two weeks have been extremely challenging. So let me tell you a little more about our journey fighting AML.
On March 5th, while traveling home, I got the call that Luci had cancer. I spent the first 7 days at the hospital with her, from the emergency room to admitting her. On day three we got the official diagnosis of AML. There was nothing left to do but fight and we started her 10 day round of chemo right away. They warn you when you are getting started that the chemo is the least amount of risk you will face in the fight and that illness and infection are what will potentially be the hardest thing. We learned this quickly as Luci got a cold at her lowest point in blood counts during her first round. But Luci is a fighter and while it did delay us through our first treatment she came out the other end in great spirits. After receiving her results post chemo we were elated that she was considered to be in remission and we were able to shorten her chemo from nine treatments to five in total.
Heading into our second round we were optimistic. But after finishing the round and killing time waiting for her numbers to drop and come back up, Luci got another fever. It was very scary this time and different from the first. Luci was having hallucinations and difficulty communicating. Very quickly we were rushed for a CT scan and after 5 hours we were moved to the ICU. Luci had sepsis and was fighting a bacterial infection but we needed an MRI to check for brain anomalies because of her behavior. In order to do this safely we decided to do it under anesthesia. While coming up from sedation Luci was vomiting and the anesthesiologist put her back under and intubated her. This was a shocking moment and had escalated beyond anything that I could have imagined. As a result of all of the fluids Luci had been given to fight the infection she had also developed pneumonia and keeping her sedated and intubated was the safest thing to do at this point.
For five days I sat there and watched her breathe and finally they were willing to take her off the sedation and excavate her. But as Luci became more awake she continued to not be able to communicate and was having psychotic episodes. So we headed back for more testing. After many different teams evaluated her they identified brain swelling and pressure in her spine.
There is no clear answer as to what is happening and really only a theory that she has methotrexate toxicity resulting in neurotoxicity. Over time, the hope is that it will resolve but there is not a clear response to when that will be. Currently, she struggles to communicate and is not able to get out of bed.
While initially I was taking my leave from work intermittently and with help from my mom and family I have been able to sustain our household, it is unclear what will be necessary moving forward. So I need help to address the long term needs of our family. We are certainly grateful for the love and prayers. Anything that you contribute will be tax deductible to you and solely used to pay for our household expenses so that I can continue to be there to support Luci.
UPDATE 5/23 – Luci has been progressing nicely and was able to come home over the Memorial Day Holiday. She has recovered from her neurotoxicity and is herself again, which has brought a ton of relief to our family. She is however still not as mobile as she once was and we are using a wheel chair to primarily get around. They believe she has neuropathy, a side effect from her treatments. The discomfort is sometimes overwhelming, but she has been so strong and resilient. We will be heading back to the hospital for round 3 of chemotherapy and are hopeful that we will not encounter any set backs during this round. Thank you so much to those who have contributed to our campaign, we are so grateful for your love and support 🫶