As I sat explaining to Alycia’s mother and father why making the move to one of the top 5 rated cancer hospitals in the country, UCSF, was the best choice for Ella’s treatment, I suddenly realized that I am alone in this fight. I have no family supporting me right now, they have all since blown out of my life with the deaths of my mother and grandmother, the glue that held my family together. It’s just me, fighting for my daughter, learning as much as I can about her rare disease, researching treatments and hospitals that will give her the best chance for survival.
And so I sat looking at the faces of these people, people who haven’t even done simple google searches on Ella’s cancer or the hospitals that specialize in treating it, and just as I was feeling the most alone in this fight, I was overwhelmed by a wave of ignorance in the form of the most hurtful statement I have ever had directed towards me in my life.
Alycia’s mother Cathy, burst out “Well if Ella dies, we’ll never forgive you” referring to Ella leaving Kaiser and getting her radiation treatment at UCSF.
This from a woman who shows up at the hospital every four or five days, for a couple of hours, leans over Ella and says “hi my baby, wake up for grandma” and then proceeds to get bothered about where to eat lunch in the city, before rushing back home to her wine and riches.
I’d like this woman to stay one night by Ella’s bedside, to sleep on an uncomfortable pullout bed that doubles as an even more uncomfortable chair. We just give people titles, without them having to earn them. I have earned my title, Father. Cathy hasn’t even come close to earning hers. If my mother were alive, and were in that room, not only would she have been tired from sleeping by Ella’s bedside the night before, but she would have punched Cathy square in the mouth for saying such vile and hurtful things to me, Ella’s father.
Like I don’t have enough stress, enough sadness, now I have to listen to ignorant insults from people completely detached from Ella’s care.
If Ella recovers, she will be told this story and we will see who she chooses to trust. The father who stayed by her bedside for months, asking the doctors questions, learning about her disease, singing to her, holding her hand and massaging her limp legs, changing her diaper, suctioning the flem from her trach, turning her every two hours, brushing her teeth, studying her vitals and paging the nurse as soon as they seem abnormal, telling her funny stories, praising her, making the hard choices that resulted in her getting the care that saved her.
Or “grandma” who wanted to blame her father for her illness and death.
We get one life Cathy, you should choose your words a little a better and think before you speak, because sometimes you can’t take it back.
Alycia has been by Ella’s bedside everyday, she is an amazing mother, so strong. I just wish she had the same support from her mother, that she is giving to Ella. Cathy, if something happens to Ella, if she dies, I hope you don’t live the rest of your life riddled with guilt because you didn’t do enough to support and love Alycia, during the worst time in her life. I hope you don’t lose sleep thinking about what you said to me, and never apologizing for it. I hope you have no regrets for not being in the hospital more, helping to clean Ella, sing to her, hold her hand and tell her she is being brave and that everything will be ok.
One life Cathy, that’s it.
Glen, you did the right thing in 1. moving Ella and 2. sharing your rage. This blog can’t give you the support and love that you need, but it’s a fine place to vent, explain, explore, and communicate. “Grandma’s” comment only underscores that there is no justice in this world, but there is truth: You and Ella and Alycia are bound and the three of you are all that matters now, regardless of your addresses or relatives. Keep fighting, man.
WOW! I’m terrible sad that you had to even endure such harsh words. I can only imagine how you felt, and how she felt after she actually said them. Which brings me to the center core of this topic. A Fathers love for his child is unconditional, and he will go to the ends of the earth to love and protect his child. A Mothers love is also unconditional, and she too, will go to the ends of the earth to love and protect her child. Unfortuntately, it feels like Cathy never had the opportunity to learn this in her childhood, thus, not knowing what it feels like to express such love. One day, Glen, I do hope you are able to forgive her, and I also hope, for the sake of Ella, you refrain from expressing this particular part of the journey to her. It’s not up to us as parents, to place negative thoughts before our own children, instead, it’s our job to allow them to find out on their own. Because, in time, Ella will have her own chance at learning about her families good traits and bad faults, and only then, is it up to her to make her own judgement. Let’s hope she judges not, and loves all unconditionally.
Dear Glen,
I’m a stranger but I want to lend you my support, because I’m disappointed in the responses you’ve gotten to this blog. This is your blog and your pain. Even if these people don’t agree with what you’ve said, I would hope they would realize that you’re suffering and antagonizing you is just going to make life harder. If I were you, I would have been furious at that comment too. But you vented on your blog, which is understandable, she apologized, you accepted the apology, and that’s that. It seems to me the only reason someone would suggest you delete it is so that they can feel better, not you. I’m not trying to be mean to anyone, I just want you to know that I think you’re right, in hopes that it will make you feel a tiny bit better.
I’ve been following your blog since you started it. I just happened upon it and now it’s bookmarked. I’m not a religious person either, but I keep hoping for good news when I open it. Ella is so adorable, and I love that she’s a little scientist. She seems like she’s a fun kid to be around. I hope she gets better soon, and I look forward to hearing about it on your blog.
Sincerely,
Tiffany
We don’t understand the pain, the anguish, the hurt you are experiencing. What we are doing, is sending thoughts of love and prayers of healing to beautiful Ella and arms of comfort to you and Aly. Love to Ella, love to you and your family. Peace to Ella, peace to you and your family. Healing to Ella, healing to you and your family. Strength to Ella, strength to you and your family. Sending love your way.
I actually thought you might find the negative to be sugar coated. It is you people that make it sensored but yet so to you. I have written my 1st response the one that you need or take all you down. Why should one believe you when essentially you are creative. You need to post a claim stating that any and all espn will be ,take-out texis Glen either a pear or or as a mart. I cant see how you pin this one in your favor.
You are an arrogant ass, and what’s far more negative than any truth written in my blog, are your ridiculous comments. What you see as “negativity” is my reality. Should I not be posting the truth about Ella’s cancer and coma? Should I sugar-coat the reality, or omit certain facts-like Cathi’s disgraceful comment to me-because I might offend the readers? Or maybe they won’t send us donations, because they feel I’m not as positive as I should be, as I watch my only child dying in a hospital bed, now for over two months. Tell ya what everyone, if you’re reading this and you think I’m not handling having my ex-mother-in-law tell me that I will be to blame if my daughter dies, because I want to transfer her to the 5th best oncology hospital in our country, then please do not donate. “Tabloid”? Really, the truth is now tabloid? Writing about my feelings on a blog about my daughter and my life, is too negative? Ok, well I’m so sorry.
I am truly happy for you and your daughter, I’m so glad that science and modern medicine could give her the chance to live a productive life. What if I say I’m also hoping that modern science and one of the best oncology and neurology teams in the country, can save my daughter Ella, would that be too negative for ya or is that ok with you? Can I write that? I’m not mending fences with anyone, as you saw, I posted the truth about Cathi’s remarks and she quickly apologized. Well, quickly-it did take 5 days and a public blog read by her friends and family-but hey, some of us need time to get our thoughts together, I understand that.
I will continue to use this forum to update my extremely supportive friends, complete strangers-with overwhelming amounts of compassion, and anyone who gives a shit about my daughter. I will not censor my feelings, omit the harsh truth, or hold back because it may offend someone totally detached from my life and my reality.
I have suggested to Cathi and Mike that they set up another website, for donations, or rosy blogs about hope, or whatever they want. No one is forcing anyone to come read my words about my life. I don’t need money, or criticism or a hot meal or a good nights sleep.
I just need my daughter back.
Glen.
Glen, please dont post this, I just wanted to say … that I was happy to see the possiblity of you mending fences with your inlaws. My daughter read your website ( yes she beat the odds and is an smart, kind, beautiful young woman) and felt that it had become so negative that it was no longer HOPE 4 ELLA but almost tabliod like. I agree. Maybe you should clean up and delete some of the things that puts out such negativity. I ‘m sure you did not start the website to be a pitty party for you but rather to lift Ella up and let the world know what a great girl she is. I just haven’t seen that lately but would like to! My daughter was only given a 10% chance to live 22 years ago so know that there is always….HOPE 4 ELLA
Cathi,
It will take time for the sting of your words to subside.
Let’s hope we never have to have more of these ridiculous issues in the future and we can all just come together for Ella who is in a coma with cancer in her brain, defenseless and fighting for her life. Let’s give her the support she deserves, and hopefully with that and medical science, we will see her recover. I also suspect Mike wrote your comment, I have never known you to express yourself in such a manner.
Nonetheless, I acknowledge this apology and wish to move on now.
Glen.
Glen,
First of all I want to apologize to you for my comment. I was feeling Aly’s fear and reluctance of leaving Kaiser for an unknown start date of treatment at UCSF. Delaying it for possibly 2-3 weeks and the possibility of a recurrence scared me. Now that Ella has made the move I am optimistic in her care and treatment. I appreciate your research in making this decision.
Cathi
Glen and Alycia, You are incredible humans for not leaving your daughter alone in a hospital. Putting yourself under that kind of stress for the love of your daughter is unimaginable for anyone who has not experienced that kind of life and death place. All my courage, warmth, and support to you. Life is extraordinary.
Love, Amy Reed
Spencer,
How very sad to see you defending such a horrible act, on the part of Cathy. Like I said in the blog, Ella will decide for herself whom she chooses to trust. Yes, weeds do grow, but is picking weeds more important than helping your daughter, as her daughter lay in a coma suffering from cancer? I think I’d let my weeds grow and deal with them after I’ve been their for my family. “Time clocks to be punched and bills to be paid”, I’m sorry but it just seems that your priorities are totally off base here and it sounds to me like you haven’t had someone close to you suffering from coma and cancer. I hope you never do, but honestly you should refrain from commenting on a subject you have no personal experience with. And yes, it does sound cruel, so next time don’t say it, we can do without cruelty in our lives right now, thank you.
Glen.
Glen, I have to wonder why you chose such a public forum to speak so rudely of Ella’s grandmother?? No one knows what tomorrow will bring. Ella potentially could be in a come for a very long time and as cruel as it sounds life goes on for everyone else. There are still time clocks to be punched, bills to be paid, weeds still grow in the garden and children need to be sent off to school with a meal in their lunch box. You have no right to judge those with obligations outside of Ella. The bottom line is that only her parents are responsible for her.