Dear Family, Friends, and loved ones.
It's been a season of peace and healing for us since Lindsey finishsed her radiation treatments. We have watched her gain weight, have no pain, start to drive, begin teaching lessons again, of course her laughter never left her. It's what makes Lindsey so unique and amazing is that despite all her adversity her view of life always has remained optismistic and full of love for all those around her, especially Josh who has been by her side (and as he said they have grown so close thru this experience that he couldn't have hoped for more) We have truly been blessed.
However, just 2 days ago on Sunday Josh and Lindsey had their first get away since treatments ended. They were staying in SL and during dinner Lindsey looked at Josh and said it felt like she was having a seizure. He gathered her up and rushed to the ER at IMED on 53rd. They began treating her with anti seizure medication which made her very groggy. Her speech began to slur and she began having pain. The cat scan that was ordered did not show any fluid build up in the brain. We were hoping that the shunt had plugged or was malfunctioning and that we would get it fixed and move on. More tests were going to be done so they admitted her to Neuro ICU, where she is currently.
As you can imagine our emotions have been high. We needed answers and we needed them right away. They finally took her for her MRI and were preparing to do an EEG which measures the brain function and lets us know if there are any seizures occurring that we haven't been able to see. She began having so much pain for the preparation of that test they had to stop and administer morphine, along with anti-seizure medication which essentially put her into a deep sleep. While she rested we got the information back from the radiologist who conferred on her case when we were at the hospital last time. He told us that it appeared the tumor had spread throughout the membrane which surrounds her brain and it is totally encompassed now by the ependymoma. We tried to take in what was being said and still hoping that what we were looking at would end up being something else. Josh was devastated. The neurosurgeon came in to see us as soon as he was thru with his surgery. He and his team broke the news to us that if what we were looking at would have been infection she would already be dead. Indeed, the tumors have spread throughout her brain and there is no more treatment that can be done. We knew that the radiation treatments were had were going to be a one time chance to conquer this horrible disease which took such a toll on Lindsey and that chemotherapy is not effective in these cases. It was very difficult being told by all the doctors that proceeded to come and see us that there was nothing more to be done.
Josh is trying to come to terms with the information we received yesterday. It was one of the most emotionally devastating days of my life and I felt wholly inadequate in trying to comfort my son at facing life without his best friend. We are taking Lindsey home today and will enlist hospice care to care for her for the time we have left. Josh decided that she will be moved into her parents home, where Lindsey and he will move back into, to spend her last days or weeks surrounded by her family. We do not know how much time we will have with Lindsey. At this point she regained conscienceness for a short time last night and Josh was kneeling by her bed. She looked at him and told him she loved him. She reached her face over and kissed him all over his face and said she loved him again. He just lit up. She has a hard time speaking and we don't know how much coherency she will regain. It was a beautiful moment. As 2 famillies that love Lindsey we all bonded in the face of what is to come. We encourage visitors. Please come and see Lindsey and Josh. Keep them in your prayers and close to your heart. The insurance company is being extremely difficult and we are enlisting an attorney to help with the situation.
We love you all very much. We have been surrounded by the love and prayers which have been offered on the kids and our behalf. Please continue to do this. Now, more than ever, we are in need of strength we do not possess. Josh is not up to answering the phone so please return any questions via email here and I will answer them as best as I can.
As a beautiful and emotional sidenote: Lindseys sister, Jessica, is expecting a little girl this summer. They have struggled with coming up with a name and last night they made the decision to name her Lindsey Kae.
With love (and a broken heart)
Julie
