Home Trades, Passes and Bombs

Joey Liston - an amazing BOTL. Feel good story here.

jsnakejsnake Posts: 5,979 ✭✭✭✭✭
If you read the prayer requests thread you would know my daughter is in the hospital and was very ill. She had the flu and then pneumonia and was on antibiotics. About 3 days into them my wife noticed she had turned yellow and didn't look right. She was acting fine. Called the doctor and he said to stop the meds and come in in the morning. When we got up the next morning my wife saw that her urine was dark orange filled with blood. I stayed home with the boys and she took her to the ER about 5 minutes away. That ER transported her by ambulance to Children's Mercy Hospital downtown KC where she was placed in PICU or Pediatric Intensive Care Unit. Her hemoglobin levels were 3 and most adults would be unconscious or or dying at that point according to the doctors. An adult male is low around 13.5 and a female around 12. They told my wife and mother in law to prepare for the worst. The doctors said the only reason she was alive was because she was incredibly tough and they were baffled beyond that. After 4 blood transfusions and 3 rough days in PICU she is now in a cancer, bone marrow unit (Not cancer just a safe controlled unit) and the nurses and doctors have all said they have never seen anyone with a hemoglobin result as low as hers was. The cancer patients who hit 7 end up getting ICU and blood transfusions. My daughter was 3. It is a miracle she is alive and I truly believe it is because all of my friends and family were praying and asking others to pray as well. I can't thank you all enough for the thoughts and prayers. I am emotionally drained. Everyone here knows my kids are my world and we came so close to losing my baby girl this week and I still can't set that terror aside. Never been so scared before in my life. She is looking great, off the monitors and oxygen, acting like her normal self, and her blood tests are getting better. She was diagnosed with a rare blood disorder called paroxysmal cold hemoglobinuria which they think was triggered by an unknown virus and then results from the cold temperatures. They are very intrigued and she has a bunch of doctors looking for answers. CMH is such an amazing place and we are so blessed to have it here where we live.

So now that you are up to speed, I came home tonight to care for the boys and I find a huge box on my porch. I look and see it is from one Joey Liston who I already know is an amazing BOTL. I pick it up and think what the heck and notice how much it cost him to ship. Won't disclose how much but it was a lot. Open it up and there is a nice letter from Joey and his wife. The package contains a bunch of toys, puzzles, color books, crayons, and more. My daughter gets to pick two things from the box and then we are going to go down the unit and give the rest to the other kids per Joey's instructions. He also inclosed a little something for this stressed out father. I am going to smoke one of these when she comes home. I have been gone and popped in here and there and it is like family and I have always been here. I just can't say enough to you guys who have been so generous and amazing to me over the years. But when someone steps up for my kids it means more then I can ever put in words or repay. Joey has always been a stand up guy and a good friend. Thank you Liston's! I can't wait to see my daughter's face and the other kids there. I will try to take pics if they will let me.

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Thank you thank you thank you. Please keep praying until she comes home!

Comments

  • jsnakejsnake Posts: 5,979 ✭✭✭✭✭
    I was supposed to find the cigars hidden as I passed things out but they must have worked there way to the top during shipping. And what a couple of great sticks too!!
  • New_BootsNew_Boots Posts: 2,651 ✭✭
    This place amazes me every day....my thoughts are still yours brother. I have a baby girl of my own (Ok, she's 12...not really a baby any more). Bring that little one home, and give her all the hugs and kisses you can.
  • catfishbluezzcatfishbluezz Posts: 7,000 ✭✭✭
    Awesome story brother, prayers for your family.
  • BigshizzaBigshizza Posts: 15,659 ✭✭✭✭✭
    Wow Jake, so glad she is on the mend. Find out if there are particular items they are in need of and I'm sure a few of us will mail to you for delivery. Please let us know if we can help and thank God for people like the Listons.
  • jsnakejsnake Posts: 5,979 ✭✭✭✭✭
    I guess Joey isn't here anymore but we became friends here and I wanted to share. It never ceases to amaze me at the generosity of people in this hobby. We all take care of each other. Joey remembered I was the first to trade with him and always tried to give a little extra when I could. That was so long ago and this was his way of saying thanks.

    The hospital is amazing and the volunteers and groups that give are incredible. They have clothes and food and showers and rooms for parents. Someone donated an iPad to every room on my daughter's floor so each child gets an iPad to use while there. They have toy rooms, coloring, crafts, etc. Each room has a tv for mom and dad and one for the kid with a Nintendo Wii and dvd player and a ton of movies to pick from. It is such an wonderful place and the community and donors take care of them. Our local family and friends have all offered help but we really can't think of anything we need other then for Addisyn to come home healthy. That is all we want. I really just wanted the prayers to help us through this.

    I do know that I won't be waiting or putting off giving back. We have discussed this in the past and I feel ashamed it took this to get me to finally want to follow through but we will definitely be finding a way to help these other kids and families. I just never pictured us being in this position.
  • alienmisprintalienmisprint Posts: 3,964 ✭✭✭
    Yeah, Joey is good people. He sent me some cigars out when I first got to country here. I told him to keep the total count on the low side since I only had one humidor to store them in. He totally disregarded that and sent 20 sticks with a humidor to put them in, lol.

    Really happy to hear your girl is doing better, man, we will continue to pray for her recovery. As a father of two daughters, I can't imagine going through what you are.
  • twistedstemtwistedstem Posts: 3,912 ✭✭✭✭✭
    Glad she's doing better brother.nothing but good thoughts and prayers headed for you!!!
    no matter where you go, there you are.

  • Glock1975Glock1975 Posts: 5,152 ✭✭✭✭✭
    wow truly amazing story, glad your baby girl is feeling better bro, really amazing people here and wish this guy was still here so we could all thank him properly.
  • flowbeeflowbee Posts: 1,203 ✭✭✭
    Thats an awesome story, please know your little girl is in my family's prayers.
  • Puff_DougiePuff_Dougie Posts: 4,599 ✭✭✭✭✭
    What a fantastic testimony to the power of prayer and the generosity of the BOTL! The timing of things never ceases to amaze me. It's always incredible to see God's hidden plans behind our own.

    I started the PRAYER REQUEST THREAD in NCR when my little boy, Sam, was very sick last week. Folks responded so warmly, and after a week of agony, he snapped out of it and back to his normal self less than 24 hours after you folks started praying. At the same time, Jake's little girl was getting worse, and the PRAYER REQUEST FORUM allowed us to pray for her as well. It's so great to see how folks respond to a need, and Joey's generous gift is another wonderful example of that. Thanks for sharing this, Jake. We're all still praying for your daughter and the whole family. May God grant her complete healing from this disorder.

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    JAKE, STOP READING NOW. EVERYONE ELSE, PLEASE CONTINUE
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    BTW folks, Jake and his wife have a wedding anniversary coming up on Valentine's Day. I happen to have his addy. PM me if you'd like to help them celebrate. ;^)
    "When I have found intense pain relieved, a weary brain soothed, and calm, refreshing sleep obtained by a cigar, I have felt grateful to God, and have blessed His name." - Charles Haddon Spurgeon
  • jsnakejsnake Posts: 5,979 ✭✭✭✭✭
    My daughter's hemoglobin levels rose above 8 and she came home today! She is making red blood cells again. We have some specific care instructions that most importantly includes keeping her very warm. I sanitized her room this morning and cleaned everything. Had to crank the heat up in the house and placed a space heater in there as well. Feels like a sweat lodge in here but totally worth it. She has follow up visits and more blood test. The doctors are still looking at finding what the trigger was. As of now it is unclear if this is a one time thing or a reoccurring condition that might arise after a virus and cold weather. As long as it stays warm and she is warm there will be no issues. Maybe we need to move south?! Thank you all for the prayers. I can't thank you enough. I am holding it all inside and trying to keep these emotions in a knot because we came so close to losing her. My mind just can't comprehend it and doesn't want to accept how close it was at all. But it is time to let it go and praise God and thank my friends and family. I could never praise the hospital and care she received enough. Today I am just enjoying having all my kids here. Watching them all play and smile. So thankful and grateful.
  • Puff_DougiePuff_Dougie Posts: 4,599 ✭✭✭✭✭
    That was so great to read! Thanking God with you, brother! It's funny, when you first mentioned the connection to cold weather, my first thought was that maybe it would help to move to a warmer climate. Maybe your doc could give you a prescription to move to the Bahamas?? LOL

    Enjoy every day... every minute with them! That's something that has come home to me over the past two weeks also. Spent all day today with my boys, just hanging out and playing in the snow. Life is a precious gift!
    "When I have found intense pain relieved, a weary brain soothed, and calm, refreshing sleep obtained by a cigar, I have felt grateful to God, and have blessed His name." - Charles Haddon Spurgeon
  • RainRain Posts: 8,958 ✭✭✭
    Glad to hear this Jake!
  • jsnakejsnake Posts: 5,979 ✭✭✭✭✭
    Puff_Dougie:
    That was so great to read! Thanking God with you, brother! It's funny, when you first mentioned the connection to cold weather, my first thought was that maybe it would help to move to a warmer climate. Maybe your doc could give you a prescription to move to the Bahamas?? LOL

    Enjoy every day... every minute with them! That's something that has come home to me over the past two weeks also. Spent all day today with my boys, just hanging out and playing in the snow. Life is a precious gift!
    Glad your son is doing well too. Sorry, I am still trying to catch up and many things here didn't mean to overlook that. I am sure you have dealt with the same emotions. Kind of overwhelms the mind and senses.
  • Puff_DougiePuff_Dougie Posts: 4,599 ✭✭✭✭✭
    jsnake:
    Puff_Dougie:
    That was so great to read! Thanking God with you, brother! It's funny, when you first mentioned the connection to cold weather, my first thought was that maybe it would help to move to a warmer climate. Maybe your doc could give you a prescription to move to the Bahamas?? LOL

    Enjoy every day... every minute with them! That's something that has come home to me over the past two weeks also. Spent all day today with my boys, just hanging out and playing in the snow. Life is a precious gift!
    Glad your son is doing well too. Sorry, I am still trying to catch up and many things here didn't mean to overlook that. I am sure you have dealt with the same emotions. Kind of overwhelms the mind and senses.
    Always tough to see kids struggling with sickness. We were fortunate that our son snapped out of whatever had him down last week. Here's hoping your daughter will get past this too, and will be able to avoid the triggers in the future. Have a great week, bro... and enjoy your Wedding Anniversary!!
    "When I have found intense pain relieved, a weary brain soothed, and calm, refreshing sleep obtained by a cigar, I have felt grateful to God, and have blessed His name." - Charles Haddon Spurgeon
  • rsherman24rsherman24 Posts: 7,213 ✭✭✭✭✭
    jsnake:
    My daughter's hemoglobin levels rose above 8 and she came home today! She is making red blood cells again. We have some specific care instructions that most importantly includes keeping her very warm. I sanitized her room this morning and cleaned everything. Had to crank the heat up in the house and placed a space heater in there as well. Feels like a sweat lodge in here but totally worth it. She has follow up visits and more blood test. The doctors are still looking at finding what the trigger was. As of now it is unclear if this is a one time thing or a reoccurring condition that might arise after a virus and cold weather. As long as it stays warm and she is warm there will be no issues. Maybe we need to move south?! Thank you all for the prayers. I can't thank you enough. I am holding it all inside and trying to keep these emotions in a knot because we came so close to losing her. My mind just can't comprehend it and doesn't want to accept how close it was at all. But it is time to let it go and praise God and thank my friends and family. I could never praise the hospital and care she received enough. Today I am just enjoying having all my kids here. Watching them all play and smile. So thankful and grateful.
    Great news. Will continue to keep you and your family in our prayers. The stories of generosity and friendship on this site just continue to amaze me. Anything we can do to help out your family or the hospital just let us know.
  • Glock1975Glock1975 Posts: 5,152 ✭✭✭✭✭
    Prayers continued bro
  • zeebrazeebra Posts: 3,174 ✭✭✭
    Hey bro, continued prayers for your daughter and your family!!!!!
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