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Discussion in 'Faith & Fellowship' started by Hoss, Mar 29, 2017.

  1. Hoss

    Hoss Mall Cop
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    It just got a bit dusty here for me as well...

    Update...
    Update.
    *************************
    Well, we arrived home yesterday from Emma's "Make-a-Wish" trip and I believe Dickens described it the finest when he wrote, "it was the best of times, it was the worst of times."
    It was definitely not easy; and all of us, including Emma, at some point questioned whether it was a good "wish" after all. Make-a-Wish was excellent in planning every necessity for Emma, such as a hospital bed, wheelchair, etc - but getting her there, and keeping her comfortable was the unpredictable challenge.
    Beginning just a couple of days before departure, Emma's right ankle began hurting, and she could no longer walk at all - we've been told it's another tumor. During the trip, her ankle swelled & hurt horribly - any little bump in the wheelchair would make her scream and cry. Her only comfort was more medication, which meant knocking her out much of the day. We ordered room service, and watched movies - and everyday about 3pm until dinner she would attempt a few hours of activity outside her stateroom.
    It was difficult to find things to do that didn't involve swimming, walking, or even sitting for long periods...so we got creative. Two afternoons, the girls (Bella & Emma) went to the Bippity Boppity Boutique. Its a salon for little girls to get made into princesses - something that teens are too old for; however Bella and Emma just went with it! One day they were made into pirates, and the other day they were done as princesses. They insisted that we dress up for dinner to match them, and so, of course, we did! We laughed and played along with every bit of it -
    We learned to be very flexible -one afternoon, Emma wanted to try to play putt-putt - that just did not work with a wheelchair, it was very frustrating for her BUT there happened to be ping pong tables she could be pulled up to! It was on the top deck, and so windy that it was impossible to play the right way, but she was really excited to find something she could do so we just got silly! We started sending her 3-5 balls at a time, and she was just hitting them everywhere! Emma laughed so much, she absolutely loved making us chase those ping pong balls!
    We had many gelato/ice cream dates, took pictures with a few characters, and tried on every possible hat in the Disney store.
    On our final night, Emma dressed in her Cinderella ball gown that Make-a-Wish had given her. We took a few pictures before dinner, and during these poses, this little toddler came up to Em and said, "You look so beautiful." Emma just sparkled, she didn't have to feel like it was pity because children speak their truths and it made her feel really wonderful.
    I'm thankful for that sweet child. I'm thankful for crazy winds and ping pong balls. I'm thankful for Disney hats. I'm thankful that even though our good times were limited, that we did have some good times. After all, laughter is the best medicine.
    **************************"
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    [​IMG]
    Thank you all for your continued prayers, shares and donations.
     
  2. Red Dawn

    Red Dawn Wolverine
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    It's sad to hear when it involves the little children. She made a wish and you helped it come true @Hoss That moment when she laughed and when she sparkled in her gown priceless. May God Bless you Emma and the family. I pray that He comforts and heals during this tough time.
     
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  3. Lokidogg

    Lokidogg Tracker

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    Many many prayers. I can only say to enjoy what time you spent AND WILL continue to spend with her. My mother is terminal and I can relate.
     
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  4. Waterguy

    Waterguy Sniper
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    You know what, maybe my day ain't as bad as I thought. I really hope the young lady has an awesome time on the cruise! Praying for all involved. God bless the family!
     
  5. Hoss

    Hoss Mall Cop
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    Update from Emma's care team.

    Last week went from bad to worse in a matter of days...We waited the requested 72 hours for the new meds to really get into her system, that was until Friday - and the result, not even close to being on target.
    Emma's pain is steadily increasing as the cancer spreads, and despite ultra high opioid doses, her pain is still unbearable.
    On Friday afternoon, her hospice team raised the dosage on the new medicine regiment, and we were hopeful that would help bring her some relief.
    Emma did actually go outside a few minutes for an "Easter egg hunt"(which was HUGE because she had refused to even move this week due to pain) - but that small venture was it -
    The rest of the weekend, she was just miserable.
    Her entire right leg hurt, but her right foot/ankle is the worse. She says it feels like her foot is in a vice and is being crushed - by Saturday night, she was crying for us to just cut it off. This is after she had already maxed out her breakthrough morphine (taken every 15 mins).
    It is incredibly heartbreaking to watch her suffer and be able to do absolutely nothing for her - you can't adjust pillows, apply ice or heat, no distractions work for this kind of pain - we can only hold her hand, and ask her to focus on breathing and petting Fleur.
    Emma faded in and out of consciousness all weekend, never fully lucid - Her hospice team is working with Egleston's oncology doctors and St Judes, the latter has had some success with a particular infusion for sarcoma pain management - so that was scheduled at Egleston.
    Today, she received the infusion and we should know within 3 days if it will help her or not. While at the hospital, the doctors each hour slowly raised her pain meds (3x) and it was still not enough.
    Therefore, Emma was admitted back into Egleston's where they will keep her for 2 nights to try to get her pain under control. The doctors are also going to try heavy radiation on her right foot/ankle. Emma is unable to lay on a hard surface for this procedure, so she will have to be put to sleep - this is scheduled for Thursday.
    Our family is glad to have Emma monitored at the hospital, although she was not too keen -
    It was suppose to be just a day visit to the hospital, and in order to get through the road trip (Atlanta traffic) and infusion, we brought Fleur as a distraction.

    The nurses helped Emma's Grandmother sneak her dog, Fleur, into the hospital disguised as a swaddled newborn.

    Emma got to hold her during the infusion. Of course, when they admitted Em, Fleur had to return home - but our hospital mischief comforted Em and gave us all a much needed smile.
    Please pray this week specifically for a pain solution, and for her radiation therapy scheduled for Thursday - we've been warned the side effects can be harsh with such a large dose. Thank you for your love and support.

    Written by: Anna Tobolski
     
  6. 00formula6spd

    00formula6spd Marksman

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    Thats sad. Prayers.............
     
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  7. TylerT

    TylerT Scout

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    This dad can't keep a dry eye reading this thread. Truly praying for Emma and the entire family. Thank you for sharing her story.
     
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  8. Hoss

    Hoss Mall Cop
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    Update on Emma

    It is extremely difficult to write these updates for many many reasons, but I know we have so many friends that are continually praying for Emma and our family...thank you. Your support and encouragement continues to be a great source of comfort to us.
    It has been several weeks since my last post, and much has changed -
    Following the previous update, we really felt like Emma was going to have an opportunity for a better standard of living; possibly going out to eat, or making day trips, etc. We were encouraged with the pain management in her right leg, and her mom actually did get her out on several short outings (the week after Mother's Day) as I shared in the last update. Unfortunately, those were the last and only outings.
    Emma's condition worsens day by day, and week after week.
    The tumors in her right shoulder and along her spine are now protruding and visible, and we can feel tiny areas like pebbles in her abdomen. These areas along her spine have made every position in bed painful, and the tumor in her shoulder has been sending jolting pain down her arm sporadically - when this happens she is unable to move that arm at all.
    She has also acquired 2 new tumors higher up on her vertebrae, these have paralyzed the right side of her mouth. She can still physically eat and talk, but this paralysis causes her to drool and slur her words - as well as creates choking hazards while eating.
    This week, out of the two days I was with her, she only had about 5 mins of clarity. I told her about visiting Chinatown and the different foods, and she perked up for just those few minutes and actually responded with a brief look of excitement. I brought our little dog Minnie for Emma to meet and hold.
    The rest of the time, her pain meds kept her in a dreamlike state...her eyes were closed even when sitting up, and she barely spoke even a few words.
    She is unable to color now, so when she is awake she will try to watch a movie. She needs absolute silence to concentrate on it; and even then, I'm not confident that she is actually watching the movie but rather staring at it.
    Emma's mom and dad have been planting a small garden right outside of Emma's window, with bird feeders and roses for her to look out at.

    Thank you for your continued love, support, prayers, and encouragement.

    Written in Love By Anna Tobolski
    Emma's Aunt
     
  9. erkinator

    erkinator AV Monkey
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    I got the update also from gofundme. It is so sad that folks have to see this kind of suffering happen to an innocent child. I have them in my prayers still I wish the Lord would hear them.
     
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  10. Hoss

    Hoss Mall Cop
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    I just wanted to let everyone know that Emma passed away this morning. Thank you all for your prayers and support. It meant so much to the family and the funds raised helped to keep the lights on during these tough few months.