In a little over a week Ella will begin her radiation treatment. If you’ve read the previous blog entry then you are aware that this treatment will not be as severe as we were lead to believe. It will include radiation at the tumor site only, to ensure that any remaining microscopic cells, are destroyed. Anaplastic Ependymoma is an extremely rare and very aggressive form of cancer. It also is the kind of cancer that usually returns at the same place the tumor was removed. Unless of course it has already spread, which it looks as though that fear has been assuaged, with the recent discovery that initial spinal fluid test results that came back positive, were in fact negative.
Ella will have another spinal fluid test on Thursday of this week, we hope that this test confirms that the tumor indeed did not spread.
All of this should of course be great news. We’re moving forward, we’re ridding her body of this cancer, and questions are being answered. Except of course the biggest question; when will Ella wake from her coma?
The doctors are not happy about having to do radiation treatment while Ella is in a comatose state. With radiation treatment comes a whole slew of new health issues, ones that are much easier to address if the patient is up and able to communicate. If however, they are incapacitated like our sweet Ella is, it is almost impossible to see those changes and to address them with medicines, as they are happening.
Basically we’re just hoping that all goes well, she has no immediate health problems brought about by the radiation treatment, and that we, dodge a bullet. I however know that this is far too unrealistic and that the longer Ella is in this coma the closer we get to that meeting with the doctors, the one we dread, the one we don’t dare talk about (except that I’m heading it off right now) the one that comes with this ending…Ella will not wake.
I know that this meeting may happen. I know it has happened thousands of times in the past, to families all around the world. I know that it will be the hardest day of my life, and I know that I will never recover from it. It is most certainly not what I want to think about right now. Right now I want my focus to be on the day that Ella opens her eyes and looks around, lifts her hand to Alycia as Alycia leaps to grab it and cushions it in her own hand. I want to focus on those first words she speaks after two months of silence (from the most talkative girl you’ll ever meet) which will either be:
“don’t tickle my feet!” or “where am I?” or “Dad I heard you fart next to my bed when no one was around, gross!”.
One of those three for sure.
I only want to imagine all the most positive outcomes, I only want to dream about life returning to normal. I don’t want to spend a millisecond pondering the worst case scenario or the “what if”. But naturally I can’t help but ask the “what if” question. I can’t help but think that the doctors have said, now that her shunt is in place, that they expect to see her get up very soon, and if she doesn’t she may never. I’m crying less, but I feel the life slowly being sucked out of me. I’m moving slower, have no passion for all the things I loved to do just a month and half ago.
I look at Alycia and I see a reflection of myself in her face. I know she is feeling what I am feeling, but being a strong mother, she would never allow herself to indulge these thoughts. Sometimes I feel as if men think of all the worst things so they can prepare for them happening, even if they never do. And women stay innocent and sweet, thinking all the most wonderful and beautiful thoughts, knowing they can depend on us men, if anything ever goes wrong.
I will of course be there for all of the women in my life, if anything goes wrong. Regardless if Alycia is remarried to a very capable and loving man; Mark is an absolute gentleman with a warm and loving heart. I will still always be there for her, she is the mother of my daughter, she gave my Ella life, she nurtured her and protected her. Marriage is a piece of paper and a new tax status. love is eternal.
I hope Alycia will be there for me, to convince me to see Ella’s future through her eyes, to see the positivity and hold it close like a flashlight in a thunderstorm. Right now I need someone to hold me close and shed some light on all of my dark thoughts.
Ella has two more weeks to wake from this same darkness. If there is a god, now would be the time to prove to a staunch atheist, that he exists.
I dare him.
Dear Glen – I in no way meant to offend you or suggest you find “God” in your circumstances, but I can see how it would come across that way. My only desire was that somehow you would be comforted as you had brought the subject of God into this blog and I had no idea it would be an unacceptable thing to include in my comments. I deeply apologise for any offense that I caused. I am a RN and work every day in the operating room. I do know first hand the debt we owe to the men and women whose brilliance and scientific breakthroughs, that were indeed often forged under incredibly difficult circumstances, religious persecution, and ridicule, continue to guide us today. Most importantly, my deepest apologies, I misunderstood and so wanted to somehow comfort you and did just the opposite. I am very sorry.
Karen, thank you for your kind words. I was raised in a religious home, I came to secular humanism after spending many years searching for proof of a divine creator, but instead only finding that we humans have incredible imaginations and that death is not easy for us to face, ever. If I were to believe that it was a divine creator who gave these scientists the knowledge and ability to remove Ella’s tumor, and not the hundreds of years of practicing science and medicine, in the face of persecution from religious leaders, then I would also have to believe that this divine creator gave Ella this cancer and is right now torturing her and our family, for no reason. I certainly won’t be forgetting logic and facts, and “finding” god, based on the ordeal I’m going through, in fact quite the opposite.
We never give credit to all the scientists who died, bringing medicine and truth to the rest of us. Marie Curie is an excellent example, she died so that Ella could have a chance to live. I suggest you all go look up Marie Curie and thank her for the radiation treatment my daughter is about to receive that may cure her of this disease, that most of you think your god gave her. If god has a plan and knows all, then he knew she’d get brain cancer, not only that, he would’ve been the one who gave it to her!
If christians aren’t willing to donate money to Ella’s medical fund, because our family trusts science more than we do a 2,000 year old story, then not only is that totally unchristian, but it just makes us more passionate about science. I would like to think that humans pull together in a time of crisis, to help one another because we’re all human, not because of what religion we believe. I would help the chrstian parents of a child who was in Ella’s same situation, because I’m a father, I’m a parent, I understand.
All these beliefs we have, should be kept to ourselves and we should never discuss them in public. They are our personal beliefs, keep them personal. Then we could have a society based on human needs, helping one another and not asking for tithing in return or anything else. Just courtesy, kindness, and love.
I won’t ever stop being a secular humanist, and if Ella survives I will raise her to trust science and to appeciate the delicate world around us that gives us life.
It doesn’t mean I don’t need help, help from chrstians, jews, muslims, buddists, hindus, native americans, and any human willing to extend their hand to me and my family. I will be indebted to you the rest of my life. Again, thank you for your kind words, but you never need to mention your god to say something nice to another person.
Hi Glen. I live in your community and have heard about Ella’s battle and have been following her progress through your updates. I am praying for Ella and each member of your family. I am also praying for the medical teams assessing and caring for her round-the-clock. I cannot help but wonder if you haven’t already seen the hand of God in the sheer beauty of your fearfully and wonderfully made daughter, in the outpouring of love and support you are experiencing, in the exquisite skill and courage of surgeons who have meticulously removed tumor cells from a most sensitve area fighting for a little girl they have just come to know (to name just a few ways that I believe God is showing up in your present circumstances). I am praying that you do see God’s love and provision for you right now and that your heart will be calmed. Ella and each of your family are loved!! Your words are precious and your love for your daughter a tangible thing when I read your updates. Thank you for your honest words.
Thank you so much for sharing your journey with us so honestly. Sending your family Love, Blessings, and Healing Energy. Your family is surrounded and held by infinite circles of support, seen and unseen. (SICS 1st grade parent)
we are all here…thinking of you, praying, feeling love and strength for ella and feeling hopeful that one day soon you will hear and see and hug each other again. it will happen.
Glen, I am also a stranger to you. Please know that people are out here that you may not even know sending you and Ella and your family so much love and support. Thank you for updating your blog and letting all of us in. I can only imagine how hard this is for you, please know you are not alone. I agree with Elise, Progress is happening!
In love and belief. Heather
Glenn, I am a stranger to you and a fellow atheist but, if there is any kind of higher being, I am praying very hard to it/him/her for you to get everything you are so desperately hoping for – the love and support YOU need and, most importantly of all, a healthy Ella.
Glen, I’m so glad you dared Him. These three remain; faith, hope & love. And LOVE never fails.
I believe. Peace to you and all your family.
Thank you for taking the time to write your blogs. I know how hard it is to tear yourself away from Ella, and how much harder it has to be to relieve everything again so that you can recant it all to the rest of us.
Please know that I will help more when I am able, and I think about Ella several times a day, every day. Every bit of hope I can muster is for her recovery and health.
You, Alycia, Deb and Mark are truly remarkable people to endure what you have with so much love for each other, and for going through everything you have with your jaws set and shoving through it to keep fighting toward hope and positivity.
Glenn, thank you for your candid updates. In your helplessness, you help us, who are thinking of and worried about Ella, by keeping us posted about what is going on. I wish I had some magic words of wisdom to comfort you. But all I have is the warmth and love of my heart that I feel wrapping around you all whenever I read your blog or even think of Ella. Your connection to your daughter is strong and infinite. Even if she is not awake and you can’t communicate with one another, the connection is just as true and just as valid as it ever was. She certainly must be feeling and benefitting from your untiring love. And around you are circles and more circles of love and support, even from people, such as our family, whom you don’t even know. I hope that can be a small glimmer in this dark horror you are now experiencing. Sending you love and light, Carol-Jean Boevers (SICS 1st grade parent)
Lifting sweet Ella and her family in prayer, for strength and endurance. God is able.
Glen, it is not a surprise to me that you feel how you feel. You’ve been tossed around like a rag doll with all of this, not the least of which is the ‘misdiagnosis’ of last week. You will survive this, and I believe that Ella will wake up, you still have time, and the shunt is in place now. Hang in there, my friend, and many many thanks for taking the time to keep us all updated on her progress. And it is progress.