Just to let you know this might be an emotionally hard read. Just want to give you the heads up. Had a hospice visit today. They suggested starting Danielle on Klonopine to see if it would help ease the posturing. If we see no relief in 48 hrs we are to increase the dose, etc. until we reach the max then another decision needs to be made if we get to that point. Our whole goal all along has been symptom relief and pain control knowing full well things would eventually get worse. The hardest question for us to answer right now is when is it time to free our princess from this horriffic disease? I know there are no right or wrong answers which almost makes it worse. Just when we think she’s past the point of ever having a good day again she’ll have a great day, like today, and smile and be alert.
The option hospice gave us today was the possibility of stopping all her meds and puttin her into a medically induced coma where w/in a week or two she’ll slip away peacefully. Which is all we ever wanted anyway just didn’t want to be the one to make the decision. It’s hard enough getting use to the fact that we’ll be burying our child but to be the ones who actually end her life is something completely different. At times it seems like it would be much easier if she were to develop pneumonia or go into cardic arrest because we have a plan for that. This……I’m not sure anyone can plan for. Who are we to play God? Who are we to say when? In asking myself that question I realize this is about human compassion, dignity, and ending suffering. We have been given the oppurtunity to control how and when she passes. Not everyone does. I’m sure there are mothers and fathers out there that only wish their child didn’t die the way they did and would give anything to have the choice we do.
This will be a long and very well thought out process that we’ll go through. I do have the confindence that we’ll make the best one we can.
Thanks for thinking and checking in on Danielle today!!:)
With love,
Megan
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Im so sorry you are left with a decision at all, Im sure you will do what is right for her and for your family. Im here if you need me. Just ask!
L-Robyn -
You are in my thoughts and prayers. Megan and Tony, You can tell so much from the pictures that Marna has shared with us. The love between you and your children is so very obvious. The decisions you are having to make, whatever they maybe, on Danielle’s care will be made out of so much love, as they have been always. Thank you for taking the time to write.
Love to all four, Kay
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My prayers are with you in your decision making process. I know you will do what is right for you and for her, because everything you do is done in love for her.
Love, Judy -
So, you’re right, this is hard to take as I weep here at my desk and seem to have a loss for words right now. Please just know that Jerry, myself and Jacob love you all very much and believe (and although so very difficult)you’ll make the best decision for Danielle. She is truly loved by us and many others. Please give her a hug and kiss from us and hugs/kisses to you, Tony and Anthony as well. Much love!! Kristin
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I’m sorry, the decision is between you and God. I pray for you to have the strength you need to move ahead. Trust that the decision you make, you make with love. Know that when that decision is made never second guess yourselves. When done with love, the decision will always be the best you could do.
God Bless,Ginny -
Megan, God is right there with you and He won’t let you make the wrong decision. You are all in our prayers. Susie
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My prayers are with you and your family at this juncture in your lives. God is with you as you make your decision and will be there for you all long after. Love transcends all. We pray for all of you at this most trying time in your lives. Blessings, Greta Menke
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Tony and Megan, my heart hurts for you and your tough tough decision. My prayers are with you to give you the courage and strength to come through this very emotional time. I weep for all of you…Danielle has always felt how much she is loved, always.
Aunt Gloria
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My Tony and Megan,
I cant imagine what it is like to make any of these decisions, but you guys have been doing a great job throughout this. They said she would never make it this long and she has proven everyone wrong and that comes from all the decisions the two of you have made. At this time the decisions are harder, but you two will do what is right for her and for your family. No one wants to see anyone, let alone your precious little one in distress. Please know that we are here for both of you, whatever you need. You are in my prayers and thoughts always and I love you dearly. Please know that you have been the best parents any child could ever ask for and she knows how much you love her.
With all my love…….Auntie Chriss -
Dear Megan and Tony,
I have read your update today and yes I have cried for Danielle, for each of you and for the memory of my mother. You see I had to make the decision you are making not for my child, but for my mother. Do not look at it as playing God, although that is very practical to think of it like that. Only you as a family know what Danielle has been through what you have been through, I will suggest this,hspice was with me too, they offered a Harpist to come and play for my mother and it was the most relaxing, tearful, heavenly moment and it helped me make the decision I needed to make. I felt my mother calm her body relaxed to the music and I cried but held her and we together her and me made the decisions that needed to be made. Please keep in mind it was my mother and not my child so I do not attempt to compare but my mom was in her own world, could not speak but those moments we shared during that Harpist time was my fondest memory and made me calm with my decision. God Bless You on this journey Danielle will forever be with you, her freedom is ahead My Prayers are with you, Becky Kroes, former PT at Pediatric Place -
Megan,
I pray the Klonopine works to bring Danielle relief. Please don’t let hospice push you into anything you don’t want to do. You have to do what you know in your heart is right and not because someone makes you feel guilty. Do you believe the posturing causes Danielle pain? Is she suffering?Believe me, I know how hard decisions are right now. We went through them when Darcee died. Only you and Tony can decide what is right for you and for Danielle. Whatever the decisions, really search your heart and know they are ones you can live with and the reasons you are making them are yours and no one elses. I say this from experience. The final steps we took with Darcee hastened her death, but we were very clear on the reasons we were taking them and knew they were the right ones for all of us. I needed this in the months and years following her death. I can say without a doubt, given the same circumstances and the same knowledge, I would do exactly what we did. That brought me peace and saved me from haunting thoughts, even today.
Our thoughts and prayers are with you all! May God be with you and give you wisdom.
Butterfly hugs,
Teryn -
Megan and Tony…Just wanted to make sure you knew that we are praying deeply for Danielle’s comfort….and peace for your family whatever decision lay ahead. It’s hard some days to trust in HIS plan…and comforting most days to know that He is taking care of our children.
All our love and prayers…Mac sends Danielle lots of love and hugs.
The Murray’s
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Megan,
I am Vince’s cousin. He told us about Danielle a while ago. I am so sorry you have to go through this. As a parent who lost a child at a young age, I know what you are going through. May God bless you and guide you in your decisions that you have to make. Prayers will guide your decisions and God will be with you in your faith.
Love and belief,
Karen -
Megan and Tony,
My heart is very heavy to hear that you and Tony will have to make those decisions soon, Im sure this is the hardest choice you and Tony will ever have to make. I know, with prayer and help from God, the two of you will make the best possible choice for Danielle and your family.
You know I love Danielle (and your family)as if she was part of my family, I will be there on Saturday and Sunday to take care of the precious angel. My butterfly I got from Danielle last Christmas is pinned to my visor, she is with me, in my heart and prayers always.Love you all,
Roberta Thomas -
To My Dear Megan and Tony and Anthony,
I’m not sure what brought me to Danielle’s Blog tonight, as it was just by chance that I found the blog again after my computer crashed. Maybe it was Danielle heart print that she has left on my heart tugging at me or maybe it was an angel passing by my shoulder. However it was i just want you all to know that I am ALWAYS here for you!!! In this heart breaking time of very hard decisions to be made know that God is always watching out for all of you, but mostly for our little princess. He will know when the time is right for her to be called HOME. Keep her as comfortable as humanly possible. When Danielle gives you one of her beautiful smiles know that is her way of saying “thanks mom and dad for loving me so much and taking such good care of me!!!” Danielle will always be with us, and one day we will all be with her again.
My heart and prayers for strength go out to all of you.
PLEASE LET ME KNOW IF THERE IS ANYTHING I CAN DO FOR ANY OF YOU.
LOVE AND HUGS,
GRANDMA MARY -
Dear Megan, Tony, Anthony and Danielle,
We are praying hard for you in your decision and in the assurance that a loving, caring God will give you the strength and answers that you need during this time. We love you and hold you up in prayer several times a day.Love in Him,’
Jack and Maureen Sullivan
Sullivan’s Travels, Inc
(now in Phoenix) -
Happy Birthday Princess!!! You’re such a blessing!
You’re in our thoughts and prayers!
We Love You!!!!Uncle Angelo & Aunt Lindsay
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