From birth, our Vanessa had issues with constipation. After scopes, tests, and biopsies, there were no answers. An exaggerated walk and complete shift in Vanessa’s mood led to an MRI of her spine when she was 20 months old. Nothing could have prepared us for the following words: “There is a tumor in your daughter’s spine.”
The room was spinning; we were not breathing. We were listening to our doctor, but not really hearing the words coming out of his mouth. We were in shock.
Then survival instinct kicked in. We asked: “What do we do next?” For us, the answer was to find a neurosurgeon immediately. We located a pediatric neurosurgeon and got an appointment for a consult. That consult turned into an immediate admission and surgery the next morning. It was tremendously scary stuff.
The surgeon was able to remove 95% of the tumor. The remainder was entwined in her spinal cord, and he did not want to risk any further damage, so he left it where it was.
Vanessa’s post-surgery recovery included learning to walk again (once she could bear weight on her legs and spine). Vanessa’s bladder no longer functioned properly, and she was not voiding her urine. The only way to ensure that it did not back up into her kidneys was to catheterize her several times a day. (We still do it three times a day.)
After the biopsy results, we were given a plan of action. A subsequent MRI of her brain revealed areas of cancer cells. We were reeling when we learned of this additional cancer. But there was no time to freak out, because it was time to learn about ports, chemotherapy, percentage of survival and long-term hospital stays. There was loss of hair, relocation of our other daughter, Kyra, to her grandmother’s house, and lots of tears. More MRI scans showed slow progression of the disease …even while on chemotherapy drugs. Then it was time for Vanessa’s three stem cell transplants.
She breezed through transplant like a champ! But the cancer was still growing! No one was giving up, but the odds were not great. That was three years ago this month! An oral chemotherapy drug eventually began to keep the cancer stable, and has done so for 27 months now! A true miracle!
The world of cancer is all that Vanessa knows. It has profoundly changed our family. It affects every decision we make. Vanessa has handled each step with a courage that is inspiring! She and Kyra are very compassionate, and they enjoy helping other cancer kids.
Through all of this, we cried, worried and prayed, but we NEVER gave up (and we NEVER will!). We have a super-supportive family to help us, and we have PCFLV. The friends we have made through PCFLV are absolutely priceless. We live with cancer every minute of every day, but we know we are not alone. We are so lucky to have such a wonderful organization in our community.
We had no choice about becoming involved in this world of cancer. But we have remained positive, hopeful and so thankful for every minute that we are all together. A positive attitude (and perhaps a bit of denial) has allowed us to persevere. We are truly blessed.
Don and Tracy Stauffer
Proud Parents of Kyra and Vanessa