Dealing with life’s daily interruptions are grueling when you have a sick child. Especially when “daily interruptions” can mean trips to the ER. Anyone who has been through the journey of caring for a child with cancer can attest to the fact that a family experiences many levels of loss along the way. The process of loss does not begin with the death of a child. In fact, personal losses for parents and siblings begin to pile up early, from the beginning of therapy to the final outcome of treatment. From the first day of treatment, daily life is irrevocably changed by the demands of caring for the sick child, and everyone in the house feels the pain. Siblings experience a great deal of uncertainty and anxiety, based primarily on the absence of their sick sibling and one, or possibly both parents, due to long hospital stays, or late night departures to the emergency room when chemo’s side-effects kick in, demanding treatment. Parents lose individual time with the healthy siblings, family dinners get skipped, school and special occasions get missed. It’s all part and parcel of the great amount of time that has to be devoted to the sick child, and the sacrifices that come with this reality. Siblings are acutely aware of the absence of their parents. What we wanted most to avoid was becoming isolated from our healthy children. Making sure they were involved in the care of their sister was an important way to stem the feeling of loss and isolation, and keep everyone together. How much that helped Abbigail’s two brothers I can’t be sure, but at least we are trying to keep our family normal, in an otherwise abnormal situation. While it’s important to focus on the healthy kids and how they are feeling, keeping a close eye on your spouse and their feelings is of equal or possibly greater importance. Given the difficulties and time constraints caring for a sick child can put on a relationship, it’s easy to grow apart. Most of the time, mom is one place, dad is another. I know this is a reality in our experience, the loss of personal time together in just about every aspect. The challenge is to try and restore some of the intimacy and private moments, while still dealing with the constant pressure of caring for your family. Ultimately, depending on the progression of the disease, there will be lesser, or greater losses the family will experience. Communicating with Matthew and the boys on how everyone is feeling, trying to keep us close, both emotionally and physically, is the goal, hopefully mitigating some of the loss that caring for a Abbigail has brought to our family over the last three and a half years.
Today Abbigail and I are cuddling beneath a bright pink Barbie blanket, enjoying each other’s company, but it isn’t in the comfort of home and it isn’t surrounded by our loving family. We are in hospital. The boys are back home with Daddy trying to carry on with the daily chores and coping with the daily losses implicated when Abbigail is in hospital, and Mama by her side.
Our family has been blessed this past month with the gift of time. We were given use of a home in Orlando, which offered our family the opportunity to drive down to Florida and have unplanned, uncharted time together, without treatment interruptions, or medical appointments. Abbigail was well the time we were away, with the exception of a few days of cough and cold, and she was able to have her NG tube removed, as she now eats well enough and is able to take her medications orally. She turned five years old during our trip and had the time of her life; splashing her toes in the water, enjoying breakfast with Sophia the First (child princess from Disney) and spending each day with her brothers and both parents without exceptions. There were no hospital visits and no additional medications or blood to be drawn. After countless beautiful sunny days with Mickey and his pals and so much pool side fun, we hit the highways for two days to get back home. We chose to detour 12 hrs though, which gave us the chance to visit with close friends in Memphis. They have been relocated there for almost a year now, seeking life saving treatment for their daughter, Abbigail’s best friend, Phoebe. This entire trip, as busy as it was, truly was a huge break for our family, an opportunity to be together without planned interruption, a blessing beyond comparison. There continued to be small daily losses as Abbigail still suffered from the sometimes debilitating OMS symptoms, which made the day to day struggling at best, but in the end it was magical. Once all of the roads were behind us and we finally saw our fields, local farms and neighbours, we were relieved to be home and back to our comfort zone. As amazing as the ignorance has been this past month, we knew that this serene feeling of freedom from the diseases that have festered our lives for years, was likely over.
Abbigail was due for her follow-up MRI on her liver lesions only two days after returning home. Wednesday, May 27th, she underwent sedation for the umpteenth time and had images taken of her abdomen and pelvis, with the focus being on her liver. After two days of waiting for results, we arrived to hospital again Friday the 29th of May to hear that her tumours have now doubled to an astronomical number of 60+ spots confined to her liver. This is not only puzzling to her team, but also very concerning and worrisome. Abbigail is continuing to pave her own way and write her own story about Neuroblastoma, relapsed disease and living with OMS from infancy through childhood and we will keep following and supporting her with all of the hope and faith that we can muster.
That Friday also turned out to be one of those unimaginable moments in a parent’s life, when they hold their child tightly, fearing the worst, but knowing that life is a gift…that this child is a gift that can be taken from us at any given moment. That moment of surreal fear brought nauseating feelings to our clinic room Friday morning as Abbigail threw herself to the floor in agonizing pain only mere minutes after showing off her talented dance moves.
Abbigail appeared to be in septic shock as her body temperature rose well above 40 degrees Celsius and her heart rate jump to 175, forcing her bloodpressure to plummet down hard and fast. This brought on severe headaches, uncontrollable shakes and shivers and confusion. Abbigail was suffering from sepsis, what was once called blood poisoning. It was quickly determined that Abbigail’s entire system had been “showered” in bacteria when her lines were flushed post blood draw. It turns out Abbigail likely had her central venous lines too close to the pool in Florida, where bacteria came into contact with foreign and vulnerable object in her body. She was immediately started on antibiotics, cultures were sent off to the labs for analysis and we were transferred from the day unit care to inpatient, where we would be for the coming weeks.
So again, here we are cuddling, well actually she’s snoring now, and although it has only been a few days, it feels like a lifetime. We have so much uncertainty to face and far too many unanswered questions for both infectious disease and our oncology team, that taking it day by day even sounds and feels insurmountable.