Delaney Renée Thérèse Diggs, 15, of Noblesville, passed away April 6, 2011. Her mom says that she was given her butterfly wings.
“A butterfly lights beside us, like a sunbeam... and for a brief moment its glory and beauty belong to our world... but then it flies on again, and although we wish it could have stayed, we are so thankful to have seen it at all." ~Unknown
She had a tumor so large it was literally crushing her frontal lobe against the top of her scalp. Delaney was diagnosed on 06/26/02 with localized Ewing's Sarcoma/PNET at the age of six, though her symptoms began as early as January of 2001 when she was still only four years old. The tumor started in her left maxillary sinus, and an unfortunate CT scan reading referred to it as "congestion." This occurred 18 months prior to her date of diagnosis, and during that period she was frequently experiencing flu-like symptoms, was easily fatigued, and began to display signs of depression, though the psychologist we took her to see insisted it was a low-grade dysthymia. The many months of lost treatment time allowed the tumor to spread further into her maxillary sinus, destroying the ethmoid bone and invading those sinus passages as well. Continued growth resulted in the beginnings of erosion to the cribriform plate until the 6cm X 7cm X 7 cm began to distort the facial features around her eyes. At that point, wrapped entirety around optic chasm, surgery so near the central nervous system and optic chasm was out of the question as the morbidity rate was simply too high due to the involvement of the central nervous system and her eyes.
Here are some of the postings:
Things took a serious turn on Sunday when Delaney awoke in my bed and was unable to walk using her right leg. Thank heaven Deb Bosler was here to help me get her down the stairs... Joshua asked what was happening, and I told him that she would not be going upstairs again. He said, "Today or ever?"
It occurred to me this was my first "last" of what I know in my heart are many to come. Suddenly, the concept I learned in my high school composition classes - "foreshadowing of events" - was crystal clear... the void is so vast it seems it could swallow us all whole. I'm going to do my best not to let that happen. Not this week!
The goal is to get her to her birthday... to March 13th... to buy a bit of time so that she can have her Quinceañera and eat cake with the people who love her. Then, she has told me, she plans on going to heaven. She has made travel arrangements and has an ETD. This does not surprise me. She has been ready for a long time and has met each goal... Disney, Thanksgiving, Christmas, Valentine's Day, her birthday.
Now, she is tired. And she has earned her birthday celebration, and her rest. I have given her the "permission" she needs to go... who better, I told her, to take care of her if I can't than Jesus? Eyes closed, she smiled peacefully in agreement.
But don't count on her missing her day - she is stubborn - she gets it from me.
Blessed Delaney and future Angel will be getting her wings soon... Please continue to pray for the family...
Sr Lisa is here from Pittsburgh... so happy! She was my rock and sense of humor when we spent the summer there, and it is so very nice to have her calm, knowledgeable and witty take on things here with us now. Sadly, she has been through this before, however she too knows where Delaney is headed and understands there are two parts to our journey now... letting her go, and living without her. Right now, my job is to let her go, but to ensure she leaves at peace both spiritually and physically.
Living without her? That I can't wrap my mind or my heart around just yet - it isn't time - we do not mourn the living here.
Delaney has not eaten since Thursday, and only takes 2-4 oz. of liquid a day. She has not spent any meaningful awake time since yesterday. It is 2:20 am and Sr Cathy from Hospice just left. Delaney is now off of all meds but the morphine, for which a subcutaneous line was just put in. For the first time in the last 60 hours or so she is resting without conversation, without agitation.
Hopefully, with some rest she will finally able to build that chrysalis so the butterfly wings she longs for will come into being and fly her to heaven.
God's peace my sweet baby... Emi, Joshie and I love you so!
Sunday, March 27th, 2011 9:43 PM
I have no news... things are so strange here - the most profoundly painful holding pattern I've ever been in!
Today is Emilie's birthday - she is 17! - Joshua had his play this weekend, which was spectacular... and in the midst of it Delaney lies in the middle of the family room, no longer engaging, no longer cognizant. It's as though life is going on, as I know it should, but it seems so irreverent with such a beautiful light fading at the center of this family.
She is peaceful, but still has not eaten in a week and occasionally calls out that she is "thirsty" - and sadly chokes on the water she so desperately wants to drink, unable to swallow thin liquids at this point. My heart is breaking for her brother and sister, who no longer have immediate goals to concentrate on, and instead look to the bed wondering, as I do, how much longer it will be?
There is so much to do - and nothing that can be done. So much to say, yet nothing that can be shared because Delaney is too tired for conversation, and too sleepy to care.
Her father and step-mom came to spend time this weekend, and it was difficult for them, I know, that she is no longer engaged. The time for conversing has passed, and when her dad walked in and saw her he began to cry - and she, frightened, exclaimed for the first time "I don't WANT to die!!!!"
My heart is breaking... for what has happened and what is about to. For what her brother and sister see, but wish not to be part of, and for what I know in my heart are the most painful times to come.
I do best with information, with a plan... but there is no plan now except what must happen to finish it all. I ache for one more smile, one more hug... just one more ANYTHING from my beautiful little girl. Oh Delaney how we miss you already!
Thank you all, so much, for thinking of us and praying for us. I find myself withdrawing, not able to relate - nothing to talk about now - just waiting for the inevitable. Please don't take it to mean you are not appreciated, my children and I simply don't know what to say – there is nothing left to be discussed. We are simply waiting - and it is excruciating for us all.
It's April Fool's Day - there is one butterfly left to hatch... Spring Break has started and the kids are readying to travel to Columbus, OH to spend the break with their father and stepmom. Delaney has instructed me to release the butterflies the day she passes – so they can fly to heaven with her. I think that is beautiful and fitting.
Our sweet girl slept soundly through the night, her breathing almost imperceptible now. She opened her eyes this morning and stared right through me... I think it took her a while to assimilate who I was, and then I got a very weak smile from her as she closed her eyes again. I spoke to her gently as I repositioned her to the left side, as she tends to sleep on her right now and I worry about bedsores. I was so saddened to see that she has paralysis in her right hand and foot... they are curling and tight and she would not without pillows to sustain her stay on the right side for very long before I moved her back.
Our conversations are in facial expressions, nods, gripping of my fingers now... she works so hard to speak and it is difficult for her, so I ask questions she can squeeze my finger or nod her head to in order to keep her comfortable, but I cannot keep from crying now... she is so tired!
I've talked to her Oncologist, Dr. Goodman, who assures me this is normal progression. Her heart is strong - we all knew that! - And the pressure of the tumor on her brain stem and motor cortex is causing the breathing changes, the paralysis, all of it. Sister Cathy will come from hospice today and we will increase the morphine dose she is getting through her sub-q line and see if it helps her to rest easier. Dr. Goodman pointed out that she may be waiting for her brother and sister to leave and that is likely a good thing. They have said all they need to say and watching her now is only hurting - and they cannot yet access the tears they will surely shed when this is done. When they return for the service the hospital bed and reminders will be put away and they will be able to see renewal as change occurs to take our lives back on a less stressful, normal course.
Funny, really, I've completely forgotten what normal feels like! It occurred to me recently that Delaney was sick, though we didn’t realize it, before my divorce in 2001… I never had the opportunity to start my life over… and the kids? This is all they have known since they were seven and three years old! We will find a new normal, together, and knowing that Delaney is at peace will be the center of that new life.
Delaney has asked me to plant a garden for her in the home we will move to when this is over… I love that idea! The renewal of life in a garden with Blue Wisteria and other plants and flowers that attract butterflies, to remind me of her.... beautiful! To that end, we will ask for donations to her old PayPal account in lieu of flower arrangements that will fade and die quickly. We want there to be life in her memories!
As for me? All of you have inspired me so and kept me going... I feel a communion with the other parents that sign the guestbook and am reassured I have done what I can, made the best decisions, and am right in praying for her to pass swiftly and painlessly now.
Thank you - so very much - for your support and prayers - I feel your hearts breaking with mine and I am sorry for your pain as well... as Len said, if this has inspired anyone to hold their child a bit tighter - a bit longer... then sharing this story has been as cathartic for you as it has for me and Delaney's life on this earth has not been wasted.
One moment at a time... LOTS of prayers for Delaney and for her Team... God Bless you ALL!
Over the course of last twelve hours it has become apparent that Delaney is now in a coma. She no longer opens her eyes or responds to me, though I continue to turn her limp frame every two hours, kissing her, telling her how much I love her. I spend my work day next to her bed and talk to her about the server I'm working on, or the user who is asking questions... anything to let her know I'm here by her side.
The quiet is respite for me, though I miss Emilie and Joshua. In truth, I am glad they are not here for this part of the voyage. It breaks my heart to have watched my daughter slip away bit by bit over the past week - but I am her mother and there are bittersweet memories in the intimacy of this final transformation. For Joshua and Emilie, it would be painful to watch as I continue to detach, alternating between caring for their sister and burying my nose in my laptop processing charge backs and assisting users so that I do not let the walls come down just yet.
I know they need me too - and this journey has been so long! For months I keep telling myself I will be a more focused mom to them when this is done, but first I have to do this and I trust them to allow me that. Respite in Ohio with their father and stepmom where they can be kids and leave this last and maternal piece for me to deal with is best.
There is a bit of guilt in the fact that I am lonely in the same room she rests in now and I am resigned for this to be over… she is gone from me. I have to learn to allow myself to look forward and to turn my attention back to the needs of beautiful and patient children who have lost their mother in recent months. I miss them... and I have to trust that there will be grace enough for the three of us to learn as a family to go on without Delaney, knowing that she is finally at peace in her mansion in heaven preparing a place for us as she promised. She has quite the mansion planned you know - I think she's earned it!
One moment at a time... so many prayers.
Her blood pressure is barely perceptible now... too low to read. Her heart rate is 140, and her breaths are more even, but very shallow. Sr. Cathy assures me it will be soon.
Knowing Delaney, she's trying to get her wings just perfect!
Thanks so much to everyone who has shared their prayers, stories, and support - I read every guestbook post and I have to tell you, if I did get the courage up to write a book about all of this, I would have to intersperse so many of your posts as well - the communion of family, friends, co-workers, parishioners and more has been a beautiful thing and all ofus together have managed to tell Delaney's story and to find blessings in her life. Thanks especially to Lauren, who lost her beautiful Gage just a few short weeks ago...
"On another walk I would relive the last day of his life and my gut would twist with thoughts of his suffering and his drawings. His drawings showed he so wanted to have super powers to heal himself. The thought of his internal struggles upset me so much ... then I heard my sweet boys voice again ... "Mom, isn't it ironic (he liked to use this word) that I wanted those powers to fight the cancer and actually (he liked to use that word too) the cancer made me stronger. Now I have all the powers I ever wanted and the cancer is dead ... take that you stupid cancer". Again, through the tears Gage made me laugh."
Soon Delaney will be free to soar to heaven... an angel with beautiful wings... and the only one I've ever heard of that resembles a butterfly!
One moment at a time... so many prayers!
Wednesday, April 6th, 2011 6:00 AM
Cheyne-Stokes stopped around 5am, now respirations are quick - @28 a minute, temperature is 102, skin changes as expected. She is not alert and despite the noisy breathing seems at peace.
This night has been a vigil for me... and from the number of visits for many of you as well. It seemed unfair not to update so many faithful Prayer Warriors. Thank you for being with us now.
My sweet Delaney, my baby girl... she is so close - I'm sure she can see heavens doors from here. Godspeed!
One moment at a time - so many prayers!
Note – Delaney passed away shortly after this posting. Please pray for the repose of her soul and peace for her family.
I'll love you mommy, dear.
Each breeze you feel and see,
brings love and a kiss from me.