Everyone seems to be doing his or her best ebbing and flowing through the daily transitions that COVID-19 has forced us to accept. We have been doing the same in our household, and I am sure the general consensus is that this physical and mental lockdown is not as easy as we expected it to be.
Jackson‘s medical treatments have not slowed down since the COVID outbreak, considering his cancer diagnosis is deemed “essential” during this time. It has definitely put an interesting spin on how we have had to handle his care, being careful to limit his potential exposure despite not being able to fully “shelter-in-place.”
So I know many of you may be wondering about latest updates with Jackson, especially after our visit to Nashville to meet with the Vanderbilt Pediatric Liver Transplant Team. The visit overall went well and we felt extremely comfortable with all of the specialists we had the pleasure to meet. We made the decision to move forward with the liver transplant, which would give Jackson the best chances of becoming cancer-free with a new liver and to reduce the chances of cancer resurfacing later in life.
Upon our return to Charlotte a few days later, we received a phone call (literally as we were walking into the house after a 6.5 hour drive) where we were requested to “relocate” to Nashville as soon as possible. Jackson had an upcoming chemotherapy treatment the following day, which required him to be hospitalized, so we agreed to pack and travel back to Nashville once his chemo treatment was complete and he was able to recover at home
Chemotherapy Cycle 6 was completed the following day on March 26th, and this cycle was particularly difficult for me because I was not able to be by Jack’s side. Only one parent was permitted to stay in the hospital due to COVID-19, and I was not prepared for my emotional reaction to the drastic change. When Jack was released from a 102-day NICU stay back in November 2018, I vowed to never leave his side. So this unexpected separation sent me on an emotional rollercoaster — I literally cried for a full 24 hours — something I haven’t done since he was in the NICU. The NICU experience can be very traumatizing for parents, and many of those emotions resurfaced, taking me by surprise. Nevertheless, I understood the reasoning behind protecting patients during such a life-threatening pandemic, so I tried to rest and waited patiently for him to come back home.
We took a couple days after Jackson was released from the hospital to allow him to rest and to pack for our long-term, temporary relocation to Nashville. Jackson experienced several vomiting episodes over those two days, but he was finally beginning to feel better on the day we were set to leave.
So last week, we packed our car with as many essentials that could fit and headed back to Nashville. We were told to be prepared to not return to our home for at least three months. Although we were ecstatic to be closer to family & friends and have the opportunity to receive more support during Jack's surgery/recovery in Tennessee, it was still very difficult to leave your home and not know when you will be able to return. Jackson is now officially listed for liver transplant and is waiting for a donor liver to become available. Once a donor match is available, we will receive a call — anytime, day or night — and will report to Vanderbilt Hospital within the hour to have Jackson prepped for surgery. Considering the complexities of a liver transplant, in addition to his previous medical concerns, Jackson will be treated as ”high risk” and will have to spend at least one month in the PICU (Pediatric Intensive Care Unit). We currently have no idea what that will look like for us with the ever-changing COVID hospital policies, but we are praying that both of us will be able to stay with him in the hospital, given the complex circumstances and extended stay.
Once he is stable in the PICU, he will be moved to a room on the standard in-patient pediatric floor where he will remain until he is healthy enough to be released. From there, we will begin our extended 3-month stay in the Nashville area, where he will receive ongoing outpatient care to monitor the health of his new liver.
We have settled in and are already feeling “at home” being back in Tennessee. When we are not attending telehealth appointments for Jack, we are sheltering-in-place in our hotel room. Family and friends have already shown us so much love by dropping off home cooked meals/gifts and by checking on us regularly (all while social distancing, of course). We love you and appreciate you!!
Jackson has officially transitioned majority his medical care to Nashville for the time being and will be resuming chemotherapy treatments with a new oncologist later this week. But for now, all we can do is patiently wait for our “transplant call” and try to stay optimistic in the midst of the COVID madness. This all feels so surreal because it occurred so quickly, but we will conquer this next journey just as we have done with everything else.
As always, I am praying for us all and sending love & hope to you & your families as you continue to stay safe. We will ALL get through this.
