Today has been longest and SADEST day for me. Regina slept whole day.. ALmost. She woke up 6 am, and complained headache right away. I gave her decadron, tylenol . Hour later she was still asking me to take her to hospital. I called hospice nurse, and she told me to give Regina morphine. I gave it to her. hour later she was crying and complaining more pain. ... It took 3 hours for hospice nurse to show up-- well, it is church day, and 2 OTHER patients got sick... so.. AND we have to wait for 3 hours . ANyway, she gave REgina more morphine and we ordered refils for morphine and decadron. It worked finally, and she has been waking up only for seconds at a time. I am really sad...
Past 2 days I have been trying to create photo slide show for her funeral service. I have way to many good pictures of her and feel like the whole service will be loooong slideshow.. SO yeah.. hehe.
I also have been thinking about who I want to say something in Reginas funeral... I also want it to be "happier" event color vice... NO black please, OR black combined with happy colors is ok. OR EVEN BETTEr, mismached clothes, JUST THE WAY REGINA LOVED IT :) I never told her what to wear or how to wear it. IF I chose clothes to her and she did not like MATCHED clothes, she went back to her closet and dressed herself HER WAY:) hehe She is free spirit she knows what she wants, how she wants it and when she makes it happen.... Respect Regina :)
.. I KNOW I SHOULD NOT write about it, but it is like talking out loud to all of you once, instead of one person after another....
Gabriel-- He is sweetheart :) He has been trying so hard to make Regina smile and laugh today. She even got punished for it :( srry gabriel.... When Regina did not wake up for lunch and dinner today, Gabriel suggested that he goes upstairs and makes some silly faces for REgina and does some crazy bootydance, maybe then REgina wakes up and laughs, and eats her lunch and dinner... / Gabriel really does care about Regina a lot and that what hurts the most. I don't know what will happen later. I have no idea.
I also ordered REginas cremation urn today.... It is beautiful stone urn. I added custom Engraving Reginas name and years....
http://www.funeral-urn.com/handmade-stone-urn-heart.aspx
Longer , sadder days ahead.
PS... all of you have been so nice and caring and chreerful and thoughtful. I know you all want to help. Please do so :) Do it the way you want. Do it the way YOU know how to help. If you feel like it come in and bring some healthy food, if you want, you can come in and clean my kitchen , or living room, or bedroom. If you want , you can step by and just say HI and give us a hug ...:)
PLEASE DON't bring sweets , or cookies, or cakes. Regina has stopped eating, and we don't want to waste any food. If you care about our heart , send fruits, vegetables, something practical , giftcards,books, magazines, or cash/checks.
13 comments:
Diana~thinking of you, Nick, Gabriel and Regina and wishing that I could do more than send positive thoughts across the 3000+ miles that separate us. I have watched two very close friends (and their parents)of my dd be where Regina is right now and it, to put it plainly, sucks. Regina is so lucky to have you.
Thank you for continuing to share your journey with us. We do care.
Lori
dd dx hepatoblastoma 1993
dx angiomatoid fibrous histiocytoma 2006
So sorry to hear she has taken a turn for the worse. After I left your house the other day, I was thinking that I would wear hot pink to her funeral but then wondered if that would be disrespectful...even though I know it is one of her fave colors. So I am glad you talked about it, that we will know what SHE would have liked! I'll call you later to see what I can do this week....Hang tough....Risa
Thank you for sharing even the toughest parts of your journey. It just saddens me to tears and there`s NOTHING to do. I really wish I`d known her and all the silly outfits and her personality... it just happend TOO fast, a month ago, reading your story I had the feeling of everything`s gonna be OK and now it`s just tears.
-and it`s OK to talk about everything you have on your mind- it`s your feelings and wishes, that matter the most now and I think all your friends love you for being straight forward (at least I, as a stranger, do ;) ).
Would Gabriel like some cards or books or something to keep him busy a little (what does he enjoy?)?
I wish ALL the best to you guys, stay strong!
-oh and the picture of her is so beautiful! There`s never too many photos of her, especially now - i think everyone, who will attend, will feel the same way (would love to see them too). It`ll be a beautiful sad story with real magical fairy dust and princess pictures ... just i was really hoping for that happy ending...
/love/
My heart is breaking for all of you. I wish I could be there to help. I can only pray for peace and comfort for your whole family at this time.
Barbara
Again, I am so sorry to hear all of this. But thank you for keeping us updated. Plus talking about it, helps. Whether actually talking to a person, or writing it down, it all helps. I'm sure the people from Hospice have given you literature to read and have talked to you about what still lies ahead. You are one strong lady. After this is all over, I'm sure you will collapse for several weeks. That's only to be expected. Hope Hospice have also given you some information and advice on what to tell Gabriel and how to handle everything with him. He's going to be lost for quite a while after she's gone. All my love to your little family.
Diana - I read your notes whenever they are posted, always at a loss for words. Your strength is remarkable as is Regina's. You're entire family is such an inspiration. I wish you all peace and comfort in the days ahead.
By the way... LOVE the suggested dress code, it sounds perfect.
Hi, Diana,
I was sorry to read that Regina had such an "out of it" day. That has to be hard on everyone.
Please don't say you shouldn't write all your thoughts. You are doing just what you should. It is therapeutic for you, and it lets all of us know what's going on without feeling like we are intruding into your private lives. We all love that you are taking us into your most intimate place and we are honored that you do so.
I was just at the memorial service (in our church, we call it a celebration of life) for a dear friend. My church is a very traditional formal church in which the norm for funerals is lots of flowers and dark clothing. Betty, (my friend who died) had requested that everyone consider it a party, wear bright clothes, especially pink (her favorite color) and that there be balloons instead of flowers in church. We complied with enthusiasm. Six dozen balloons were tied to the ends of pews. We had a great party with good food in the parish hall after the service. It was a wonderful celebration of a life. I am fully in favor of looking at it this way. I encourage you to get the word out to people any way you can that THIS is how you and Regina want it. I'll be sure everyone at LNES knows your wishes.
Blessings and love to you, my friend.
Love, Katrina
You do what you need to do to get through this Diana, and don't worry about how other people perceive it. There are no rules in life -- just do what's best for you, Regina, Gabriel and Nick. The rest of us are here to support YOU, not the other way around. Give yourself a big hug from me, ok?
Diana you are amazing. I'm crying as I'm reading then all of a sudden I smile when you mention wearing mix match clothing.....Regina is blessed to have a mother like you. I will text you later.
Hi Diana!! I don't know if you remember us! We are friends with Kathy and Steven Bell and we met once a few years ago at the Ride For Kids in San Diego. My daughter Jordan is the same age as Regina- their birthdays are one day apart! (Jordan was dx with Medulloblastoma in 2001) . I just wanted to say that, thanks to Kathy, I have been following your blog and have been heartbroken for your family. I have never and will never understand this wretched, cruel disease and I pray that someday none of our children will have to suffer. I wish we lived a little closer so that we could stop by and visit with you. You are in our prayers!
-Angela Atherton
www.caringbridge.org/ca/jordan
Diana if there is anything I can do, even just to talk, please, please call me.
Loving you all....
I'm not sure you can feel it....
I'm sad with you. Thank you for sharing everything public here....
Thinking of you....
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