A hard day for me

Tuesday, January 27, 2015

This is not going to be a bouncy, happy, inspiring, blog. Today I am writing because I need to say this. It is a very tough day. My grand-nephew Eli, who is 3, is on his way to Duke medical center today for a stem cell transplant. Without it he will die. With it, he has a 60% chance. Yes. It has been a rough road for him and his mom since his birth. He did not eat well - would not breast feed or take bottles. He threw up every day. Not spit up. Huge vomiting. He has sensory issues, and things bother him. we laugh that he is forever taking off his clothes. But they hurt him. His baby teeth started to fall out because his jaw was dissolving. He had pneumonia 3 or 4 times. Yet with all that, he never appeared to be deathly ill - and still doesn't. When he began to bleed from his ears, his gums and his nose, the doctors finally began doing the tests that should have been done earlier. They decided he had Evans Syndrome, an immune disease. yet it didn't explain everything, and they did more testing and realized he has a much greater immune system problem. SCIS, or "bubble boy" syndrome. Except each case is unique. Most children don't survive to their first birthday. Eli has made it so far. I am so worried, and today is a day full of tears.

My mom and disabled brother live with my sister in Jacksonville, about 3 hours away. My sister and her husband will be spending as much time as they can with their daughter, Lisa and Eli. Eli's Dad is working and taking care of their other son, and he is just devastated too. My other 2 sisters and I have to step in and take care of mom & my brother. They need someone there. Right now I feel that weight is all on my shoulders, and my DH is not happy that I will be spending so much time away. The sleeping arrangements are not good, and he is not comfortable on a sofabed, so he will not be coming with me. And I want to go to Duke too. I love that sweet boy and his mama and my sister. I want to do whatever I can to help. But right now, I am drowning.

I don't need suggestions. I know I will get through this. I just needed to get it out so that I can get through the rest of the day.

Thanks for listening...
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Member Comments About This Blog Post
    Patti, I'm thinking of you this morning, and praying for you and your family, especially little Eli. emoticon
    2333 days ago
    Hi Patti.........
    I have been waiting for this blog and hoping that I could be of some help, even though I live so far away. Please know that I am praying for Eli and his folks and brother and Grandma, and YOU and your sisters, brother and Mom. All of you will need strength to get through this and to be there for Eli.
    We can't be there in person, but know that lots of hugs and the best wishes possible are coming your way from your Spark Family.
    We emoticon you. Please keep us informed as you can.
    2333 days ago

    Comment edited on: 1/27/2015 9:27:51 PM
  • HICIM705
    You know ... I've been thinking about you and there was just something that pushed me gently to come to your page. I know that there were problems with Eli, I never realized how incredibly sick that little boy really is.

    Boy, do I wish more than anything that I could just give you a hug and have a soothing cup of tea with you and listen to your stories - but, of course, I'm only a 'virtual SparkFriend' and I'm sure that you have folks for that.

    Please know that I'm thinking and that I'm trying to send good vibes your way.
    Please blog whenever you can or whenever you need to. . .it really may help enough to get you to put one foot in front of the other - to keep you going - and to help you to be able to help your family.
    emoticon emoticon
    2333 days ago

    Comment edited on: 1/27/2015 6:33:02 PM
  • BON204
    2333 days ago
  • HOLLYM48
    Sending prayers and hugs and get well wishes. Your little Eli has proven that he is strong, may he stay strong for all that lies ahead for him. God bless.
    2333 days ago
    Your Spark friends are here with you even if we can't be there to help you out with your care of your mom and brother! Eli and his mother and your sister know you would be there if you could. I am very close to Duke and will send all the healing energy I have Eli's way and all the strength energy I have to you and your entire family! Hugs coming your way too! BTW, if yo don't recognize my user name, this is your friend, Melissa formerly JAXMOMMY. Love & Peace!!
    2333 days ago
    I am so glad you wrote this blog so that we can be there for you. Sometimes, we don't need anyone to "solve" our problems...we just need someone to show up for us. I am showing up for you! I am in tears and praying all will be ok. I am so very sorry you are going through all of this. Please let me know how things go for little Eli. And for you.

    God Bless You & Your Family!

    Blessings, Patti emoticon
    2334 days ago
    sending you and your family all my love. Keep us updated. emoticon
    2334 days ago
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