Update On Ellie

My name is Kyle Cuiching, better known as Ellie’s Mom. These days that defines who I am.

My life is defined by my 7-year-old daughter Ellie’s brain tumor. I spend endless hours and days helping her fight this brain tumor. I cuddle her when she isn’t feeling well, hold her hand as she vomits, sit with her at chemo for a whole day and entertain her. My whole focus in life is to help her get through this incredibly long and draining journey she is on. What keeps me going are the smiles and joy she brings our family. Our family would not be the same without sweet Ellie. 

So here I am giving you an update on Ellie and her condition. It has been 280 days since Ellie was first diagnosed with a brain tumor. She had two surgeries within two weeks. They were able to remove a huge portion of the tumor, which was the size of a cantaloupe. After surgeries, it shrunk to the size of a walnut.

From there we began a 60-week chemo regimen to try to kill off the cells that causing the tumor to grow. This was the hope when we began chemo in March. We went weekly downtown to Children’s Memorial and spent six to eight hours there while she was pumped with poison.

The hardest part for Ellie was the port access (shot) and blood removal. Ellie started off handling chemo like a champ and then her counts started to drop. They decided to try to give her a boost with a blood transfusion. This bought her some more weeks of chemo. Then sometime in August, her counts started dropping and were not coming back up like expected. Until her her counts would come back up, they stopped chemo. 

Ellie’s MRI was showing that her tumor had grown to a the size of a small lime. At this point, the doctors decided to go back in for a third surgery. We then proceeded and got two additional opinions and they agreed that surgery was the best course of action.

So it was set, on Sept. 27 they were going to cut into my child’s brain for a third time.

That was the longest few weeks, waiting for her surgery. I often stayed awake at night thinking of all that could go wrong with the surgery. Many people asked, "Why now? Why did they not go back in for a third surgery before?" The answer is that the tumor was intertwined with many bloody veins that could cause Ellie to bleed out. Through the weeks of chemotherapy the doctors believed that it had deadened those veins so they were able to get in and remove more of the tumor. The doctors prepared us that they would not be able to get the whole tumor but this was necessary in order for chemotherapy to work. I knew they couldn’t get the whole tumor, but in the back of my head I hoped for a miracle.

So here I am. It has been over a week since Ellie’s third surgery. I wish I could say it was her final surgery, but we are far from done fighting. They were able to get 75 percent more of the tumor; they had to leave a portion that was on the brain stem. They also had to leave some of the tumor that was intertwined with the main artery. If they attempted to resect that portion of the tumor, it could of cause a stroke. 

When the doctor came in, he told us Ellie was doing fantastic and asking for a pillow. I was overcome with relief. We sat with Ellie in recovery and it was very scary watching her just continually vomit. But after a couple of hours, they
informed us they were sending her up to the third floor constant care. I could not believe my ears — no ICU this time.

Ellie did fantastic in her recovery. The only thing I can complain about is her appetite. She has not been eating very much and still vomiting here and there.  She is getting stronger every day and we are home enjoying every moment of her recovery. 

Many of you might be asking where we go from here. Well we are far from out of the woods with Ellie. We go back in Friday to meet with the doctor to get her stitches removed. So we are hoping to hear the pathology report from the new portion of the tumor. If you remember from my past blogs on LoveforEllie.com, this rare brain tumor goes higher in grade level when it grows. Needless to say, I am praying that the pathology says it still is a grade 2–3. 

So after Friday the plan of action is another MRI and then from there a new chemo regimen. We are still waiting to hear what that will be. For now we are focusing our energy on Ellie’s recovery from her surgery. I cannot thank everyone for your love and support through this incredible difficult time in our lives.

If you want more information please visit www.loveforellie.com.