I would like to preface this post by sending lots of love to ALL OF US. We are all being directly affected by the impact of COVID-19, so I hope you all are staying safe, healthy and practicing social distancing. So much has happened in the past week since the outbreak, but I still wanted to give those who are interested an update on Jack in the midst of the chaos.
Jack completed his 5th chemotherapy treatment on March 12th, 2020. All went well with the treatment itself, but he was honestly very sick and nauseated after we made it back home from the hospital. About 24 hours after being discharged, Jackson began experiencing extreme vomiting that was very concerning. In total, he has vomited approximately 20 times in the past week, and 16 of those episodes were within less than a 48 hour time period. Overall, he seems to be feeling much better than he did last weekend, and has only vomited once today.
Considering Jack is now a likely candidate for liver transplant, his oncology team plans to continue chemotherapy treatments until the actual liver transplant takes place in order to prevent the cancer from growing in his body in the meantime. Our next chemotherapy treatment cycle is scheduled for next week, and we are currently uncertain of how many more cycles he will receive.
We also had a bit of a scare last week, where doctors noticed a “spot” on his heart during a recent echocardiogram. We had an additional sedated echocardiogram and sedated heart MRI completed to ensure that he didn’t have a blood clot on his heart or evolving cancer cells. Thankfully, the MRI results came back normal, and the cancer is not spreading.
Jackson has also been officially fitted for hearing aids, and we should be receiving them in the next week or so. We are a little nervous about adding hearing aids into the mix with cancer treatment, liver transplant, and the developmental delays that he was already experiencing before this diagnosis, but we will take it in stride just with everything else. It was really important to us to be proactive with the hearing loss he was experiencing as a side effect of his chemotherapy medication, as to not further impact or cause additional developmental delays.
We will also be meeting with the pediatric liver transplant team at Vanderbilt Children’s Hospital this upcoming week for a 2nd consultation. Hospitals nationwide are already implementing strict policies to protect patients and medical staff in the midst of COVID-19, and we are experiencing those changes firsthand. Jack is already considered high risk and immunosuppressed due to his medical condition, so doctors are being extremely cautious to not expose him to unnecessary people or germs. Many of Jack’s appointments are being converted to teleconferencing, and only one parent is allowed to attend his in-person appointments.
Friends, please pray for me as I potentially navigate these appointments and complex conversations with medical specialists without Jeremy present (he will likely only be able to FaceTime us during the appointments), all while wrangling a 19-month-old who is clearly becoming less ”patient” with the non-stop appointments on a regular basis. Our medical team stated that they will try to be granted an exception for both of us to attend due to the nature of the visit, but no promises can be made. We are praying for safe travels and a quick trip with minimal COVID-19 concerns. Please take this pandemic seriously, and protect yourself and others. If anything, do it for Jack. Love you all, and praying for everyone as we navigate the unknown of the upcoming weeks.
