9 months. It’s crazy to believe that it’s been 9 months since we heard of Sophie’s tumor recurrence. 9 months of fear, doubt, and endless questions; but also hope, love, and the support of our amazing family and friends, and our team at Sloan. People often say time flies by; in our case, this has been some of the longest months of our lives, but our incredible “Super Sophie” has powered through like no other.
“We have never seen a child, any child, eat the way Sophie has eaten through her chemotherapy” – Jessie, one of Sophie’s incredible nurse practitioners at Sloan
“I want a cookie!” – Sophie, immediately after waking up from her tremendous 8+ hour tumor resection surgery
“Mommy, are we going to school today? I’m so sorry Soph, today we’re going to the hospital. Ok, but maybe I’ll see some of my friends there!!” – Sophie’s response when learning it was a hospital day instead of a school day.
These are just a few of the amazing gifts we’ve experienced with Sophie over the last 9 months. To say she is special is an understatement; countless people have mentioned to us how resilient, brave and adaptable our Sophie is to her ever-changing daily routine. We could not be more proud of her as an individual, and feel so lucky to have her teaching us what it truly means to live in the moment.
On October 29th, Sophie began her final chemotherapy treatment (hopefully forever) for her tumor recurrence. As always, chemo is never an easy week, but Sophie managed to make it through with smiles and laughter. She provided manicure services for any nurses and patients who wanted one, and brought in her super capes to share her “super-powers” with everyone else.
The week was filled with both happiness but also anxiety for our family. We’d already experienced a “final chemotherapy treatment” last year and are therefore reasonably hesitant to experience the same feelings of relief we felt during her first cancer diagnosis. As we have mentioned in the past, once a child is diagnosed with cancer, there a lifelong fear that the cancer will return at some point in the future, and this fear sits at the forefront of a parent’s mind for years to come. So while we are pleased that her treatment is now complete, it is difficult for us to feel completely “out of the woods” at this time.
Sophie underwent another round of post-chemo scans in the middle of November. We are relieved to report that again, these scans came back clear of disease. Moving forward, Sophie will be able to attend school more frequently, and will return for check-ups once a month to “flush” her port and meet with her team at Sloan. She will also continue to have scans at the hospital.
We are beyond grateful to the “army” of individuals that have treated Sophie at Sloan now for over 2 years. It is impossible to mention every doctor, nurse, or volunteer that has in some small way made this journey a bit easier for us, but through it all, they have supported us, held us, and cried with us through times of difficulty and pain and for that we could not be more appreciative.
To our family and friends who have supported us through this long and difficult journey; thank you from the bottom of our hearts. A pediatric cancer diagnosis can be one of the most isolating experiences a parent will ever face, and every text, message, call, or conversation truly made a world of difference to help us get through the day.
Finally, we have learned through our journey that pediatric cancer research receives only the tiniest portion of government funding for research. Although it is the #2 killer of children in the United States, only 4% of the nation’s cancer funding goes to pediatrics. This number is astounding to us and the many parents whose children have been diagnosed with this terrible disease. We need everyone’s help to continue to raise awareness to increase funding for kids like Sophie. At end of year or when planning your charitable contributions, please consider donating to a pediatric cancer charity, or an organization that helps kids with cancer or their families. These organizations often act as lifeline for families like us during times of unimaginable challenge, and can make even the most painful times just a bit easier to handle.