How it all began

Welcome to Evy Beats Cancer, the blog I am creating to convey news of my beautiful daughter Evelyn's journey through cancer.



How did this all happen, you ask... she is only 22 months old... it is frankly unbelievable what this baby is enduring. Well, I'll tell you.



It all began a couple of weeks ago when Evelyn fell down the steps in our home. She landed on her arm and then stopped using it. We assumed she had hurt it from the fall and took her to the ER. There they assured us that it was a small fracture, put a splint on her, and sent us home with a referral to an Orthopedist. In the meantime I noticed that Evy had a slight limp in her right leg.. the same side as her hurt arm. I remember laughing with a friend and saying that my poor baby was falling apart.



We went to the Orthopedist a few days later and he said it was not a fracture. He could not explain why she wasn't using her fingers at all, and didn't question it. Looking back there were signs that this was neurological and not simply a physical injury from a fall. I even asked him about her ankle and he said that toddlers can't sprain their ankles... and still he didn't question what was wrong. Instead, he sent us home and said that if she did not use her arm in three weeks to come back.



A few days passed.. we had a Halloween party and the normally socialite-esque Evelyn wanted a nap right after her friends arrived. She went right down and slept through much of the Halloween fun. Warning bells rang in our minds. This was not our Evy! She was still not using her arm. No wiggling of fingers. Just a dangling limb. Scary stuff. So we went to the pediatrician. We mentioned the leg, showed her the arm, and she seemed perplexed. She ordered another x-ray and suggested we see a neurologist. I tried to make an appt. with the neurologist the next day and between two offices I was only able to make an appointment for February and then December. Increasingly frustrated, we decided to do more the following day since it was five o'clock.



That night, Brian took off Evy's clothes and diaper in preparation for pajama time and he called me in... Evy's leg was a backwards C- her knee was about 3 inches behind where it should have been. Clearly she had lost most use of it. Saying that I flipped out is an understatement, because this confirmed all of my previous intuition... that she had no fracture but that something else was wrong. Unfortunately we had to go to sleep that night with this big question mark looming while our sweet angel slept.



The next day we called the pediatrician and they soon told us to head to an ER for a full neurological exam. When we got there they sent me home with Stella to keep her from H1N1, which was rampant. I left just as she had been taken for her CT scan. I drove over an hour home with Stella and killed some time doing some work in the yard to quell my nerves. The phone rang and Brian broke the news- Evy had a brain tumor. I threw clothes into a suitcase and left with sweet Stella immediately, my heart breaking into a million pieces all the while.



Evy's brain tumor was on the left side, therefore affecting the right side of her body. It was at the top of her skull and the neurosurgeon has referred to it as "gigantic". (The size of a mango in diameter.) Parts of it were dangerously close to arteries. They suspected it had been growing since birth. (ETA: We now know that it only took 2-3 mos to grow.) Surgery was scheduled for Friday morning and there was still hope that it was a benign tumor. The next day she had an MRI, which saddened the doctors because it showed that it was a much nastier tumor than first expected and was most surely malignant. On Thursday Evy's condition worsened. I was certain we were going to lose her soon. The oncologist told our neurosurgeon that emergency surgery must be performed. As with every other procedure, I held her in my arms in her crib as they wheeled us down to the OR. Through all of this I have kept my mood as light and positive as possible for Evy's sake as well as for my own. As we were wheeled downstairs I discovered that the nurse with us went to Oneonta. We laughed and joked about our time there together, and I even cackled. I think that Evy didn't even know that something awful was happening, just that mama was chatting with a girlfriend and laughing and having fun. I laid her on the operating table and talked to her as they put her under. She only cried for about 10 seconds and then was out.



Seven long hours passed. Seven hours! We stayed as upbeat as possible waiting for news. We saw her at 1:30 am. She had a white bandage on her head that made her look like a little Russian onion-domed cathedral. The neurosurgeon said it went well but that we would not be sure if she was okay until when she woke up.



They kept her sedated through the next morning when she underwent a post-op MRI of brain and spine. The news which resulted from this MRI was that he had gotten every single part of the tumor out, even those around arteries. She had suffered from a stroke at one point, either before or after surgery (I suspect it's what caused the fall.) Her spinal cord looked clear of tumors, but was not 100% because of the amount of blood in the cord from surgery that obscured the image.



When Evy woke up she was speaking within an hour. This delighted our neurosurgeon because he had cut near her speech center and he was concerned about it. Evy was saying "what's that?" and pointing as she often does, and winning the nurses hearts by giving them little waves goodbye. Her left eye was swollen shut and she had a huge incision in the shape of a C on her head. The side of her head was very swollen and bruised. SShe kicks her leg a tiny bit and still does not use her arm. We hope that this is not permanant.



We know Evy has cancer... but we still don't know the pathology of the tumor. We don't know if it's just the "evil cancer", as I call it, or the "Evil, Evil, EVIL cancer." We are supposed to find out tomorrow, but that may be pushed back. Even if we find out tomorrow what they initially think, nothing will be confirmed for weeks. But the diagnosis will decide what our course of action will be. And we are on pins and needles waiting for this verdict.



As for now we know that we will be taking Evy home sometime between now and next Monday when she will undergo surgery to put a chemo port into her heart and a spinal tap to check her spinal cord for tumors. From there it is still up in the air.



We are happy she will be going home so that she can see her loving twin, Stella. They have not seen each other since last Tuesday, and Stella is confused yet happy hanging out primarily with Grammy Pammy back at the Ronald McDonald House, which is just a short walk from Evy's room. I am also nervous about going home, as can be expected. Stella has the sniffles and I am so worried that Evy will get sick just before the fight of her life.



We are staying as positive as humanly possible! Once you start to go down that spiral of hopelessness, it is a tough climb back out. Believe me, I know. So for now, I put on a happy face and find joy in my heart. My girl is alive, she shines, and she is. I name this blog "Evy Beats Cancer" because we believe she will. She was a fighter when she was first born and spent week after week in the NICU. Now she has put on those boxing gloves again. She even has a black eye to prove it!



I have gotten so many well wishes and "what can I do?'s" For now we are taking it day by day, but soon we will have to be more organized. Brian will run out of leave and be back at work. I will take you up on your offers. Primarily helping with Stella, perhaps helping with Evy when she is home if she is sick, and vegan meals up the wazoo.



Above all, what keeps me going are the "Evy's a fighter; she'll make it" comments that you have sent via email and Facebook. Please keep them rolling in, join this Positivity Party, and hold us on your shoulders as we trudge on with joy and grace.