Team #MemphisWilliam

For: Memphis Spencer
Alexandria, VA
Organizer: Christina Spencer
Team #MemphisWilliam (Memphis Spencer)
$23,620
of $40,000 goal
59% Complete
Raised by 352 donors

The Story

We are approaching one year of hospitalization. Our sweet boy, Memphis, was delivered abruptly at 31 weeks on April 3rd. He spent 7 1/2 weeks on a ventilator without success in weaning him off. We made the difficult decision to leave our comfy nook and the doctors, nurses and staff who had become good friends, a second family and home, to transfer him on May 24 to Children's National for progressive care. It's been determined that he has a PDA (open heart valve), VSD and ASD (holes in his heart) which are all causing extra blood to flow to his lungs. This makes him have to work very hard to breathe, and unable to become extubated and get off of the ventilator. Currently, they are treating him with diuretics (along with sedation/pain meds, antacids, etc.) to help lessen the pressure/fluid on his lungs and wean his ventilator settings. BUT, he's going to need heart surgery to correct the problem.
Your help is needed as I have exhausted my leave at work and am not sure when his surgery will be and how often I'll need to take off once I have to return this summer. We're also unsure what kind of medical bills we will be encountering as a result of his prolonged care. Not to mention, going back and forth to DC all of the time (gas/parking/food) is starting to add up. We're incredibly fortunate to have such an amazing support system and know that many of you have been praying and sending positive thoughts to our boy and are so appreciative of that. Please, keep them coming! If you are able to do more and gift monetarily, even a few dollars helps!

We've designed tshirts and hoodies that can also be purchased to help spread the word. And we have a new Facebook page specifically for Team Memphis!

Facebook Fan page: www.facebook.com/teammemphiswilliam

Shirt Fundraiser:
https://www.customink.com/fundraising/memphis-william

if you're considering purchasing LuLaRoe or Thirty-One products for yourself or as gifts for the approaching holiday season, I can help you with that as well to assist with raising funds for our family.

Thirty-One:
www.31shopwithchristina.com

LuLaRoe:
www.facebook.com/lularoechristinaspencer

THANK YOU 💜

We love you all!
Brian & Christina

Fundraiser Updates

Posted on April 17, 2018

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Posted on April 17, 2018

It’s been a week already since our amazing little boy passed. To say last week was surreal would be an understatement. Brian and I spent the weekend with some of our best friends at their beach house to celebrate our anniversary and get away to focus on each other and have a change of scenery. It was much needed and therapeutic. But coming back was really difficult. The realization hit me like a ton of bricks that we weren’t coming back to what those previous 371 days provided. I would not get in the car Monday morning, drop Harleigh off with her nana, drive to DC enter that unit and see my beautiful boy’s face. Hold his hand. Sing him a song. Instead, we barely left the house and I stayed in bed almost all day long. Harleigh gets smarter and smarter with each passing day and it’s so bittersweet that we won’t get to experience these same things with Memphis. 

The amazing transport team at CNMC made it possible for us to take Harleigh to the helipad where she got to tour the inside of the helicopter, “Bear Air” and try on the flight helmet. She really enjoyed it. 

We are tentatively planning a true celebration of life for the evening of Saturday, May 26. A location is still being secured and we will post an update once everything is set. 

Our fundraising efforts continue if you're able to share or support. Through this Wednesday you’re still able to order shirts/tanks at:
www.customink.com/fundraising/memphiswilliamspencer.

I also have a ThirtyOne Gifts party online at:
https://www.mythirtyone.com/304237/shop/Party/EventDetail/10608483

We sincerely appreciate everyone who has sent food, love and thoughts ❤️

Posted on April 10, 2018

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Posted on April 10, 2018

This post is one I’d hoped for so long I would never have to write. It crushes my soul that this is our reality and that I have to report that, at 11:14pm yesterday, April 9, at 371 days old, our amazing little boy took his last breath in my arms and under the hands of his daddy and a truly phenomenal doctor. 
Late last week, we received the news that his CT scan showed evidence that his (already very poor) lungs had actually gotten worse, despite how his respiratory compliance had improved. It destroyed us, especially since he looked so amazing on the outside. But Brian and I agreed from the beginning that if there was ever a point when there was no chance for recovery and he would be unable to come home and lead a happy life, that we would let him go. We reached that point last week.

We had the most amazing weekend with him. So many visitors were in and out. He is such a special little guy and has touched so many lives. It was so eye opening with the amount of staff that came through to show him (and us) so much love. He was awake and alert for all of it and very comfortable. We were also able to get him outside in the healing garden for the first time ever. And we did it as a family. Harleigh handled it all really well and the nurses and Child Life specialists did an amazing job of making it fun for her. She was also able to see the helipad and get in the Bear Air chopper. We hosted close friends on Saturday and our family Sunday and yesterday before spending some alone time. It was all very peaceful and the staff were the epitome of compassion and grace. It was clear how very much he is cherished. And they all assured us, even down to the last minute, that we were making the decision that was right and best for him. 
We will have many pictures to share from our visits and outdoor adventure via instagram and our Facebook page (Team #MemphisWilliam). We will continue to keep you updated here of arrangements for a celebration of life and later today I will update with information for a meal train. T-shirts are still available and we’d love for everyone to wear their shirts for our very informal service ❤️ www.customink.com/fundraising/memphiswilliamspencer

Posted on March 30, 2018

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Posted on March 30, 2018

THe Questions On Everyone’s Mind

After a year in the hospital, you can expect we’ve heard it all. We pride ourselves on being very transparent and realistic people. We realize the severity of our child’s illness and seen him recover from situations which, quiet frankly, should have killed him. But he resurfaced each time ready to take on the next hurdle. I will forever wonder where he gets his drive and energy because it’s certainly not from me. 

So, let me address the looming questions, because although many of you likely internalize them, some have asked them out loud. And I’m happy to educate you.

Are we just hanging on to keep him around?
Is he EVER going to come home? 
Will he ever get better? 

If you’ve been following our updates, the. You know how much praise we give to our nurses and doctors. Not only for the care they give, but for their ability to be brutally honest with us in the most compassionate way possible. We have a very good and trusting relationship with them and they know us and our mindset well. We’ve been very clear with them that if we at anytime are making choices for Memphis that would be considered unfair or unreasonable for him, that they call us out in our naivity. We have been assured that, although there were times where things were quite tenuous and we found ourselves on pins and needles as it all played out that there has not been a point in which all hope was lost. 
We recently shared a story on Facebook of a little girl who has spent her first 900+ days of life in the hospital battling severe chronic lung disease. She gained enough stability using the ventilation method that has given Memphis stability over the last couple of months to be able to eventually wean off her high ventilator settings, become more mobile and is now learning to walk! You know what the most valuable resource is for poorly developed and damaged lungs? Time. Seems simple, right? Not when you have inconsistency in treatment  (which was the 9 month trial and error period for us) and a baby who, when fully awake and not on sedation wants to actually BE a baby. So sometimes it’s necessary to “take him out of the equation” with sedation and muscle relaxer until he’s in a better spot to be able to handle all of the movement. I can assure you he is not suffering, is very comfortable and interacts as much as he’s able to every day. The bottom line is, he won’t remember this. But we will. Long after the tubes and wires are gone, all he’ll know are the pictures and stories of what an amazingly strong fighter he is and how badly he wanted to be home and be a part of his family. 

If there were no chance that he would ever get better, or would be incapable of leading a happy, decent quality of life, then we know we would be faced with some difficult decisions. We are committed to staying completely focused on his progress and getting him home as optimally healthy as he is capable of being until or unless something happens which requires our focus to shift. 
This is all very real for us. We are not “keeping him alive just so we don’t have to let him go”. We made this journey public for several reasons. Primarily to give hope to those going through the stress of having a chronically ill and hospitalized child, to raise awareness that this world exists, and to keep everyone informed in one outlet of how he’s doing. Please, read the updates. We hide nothing. The answers are all there. It’s not always easy to compose and even harder sometimes to hear for ourselves, but we decided long ago to share all of this with all of you. We appreciate your help in continuing to spread the word and share his story in the hopes it will find its way to someone in a similar circumstance who is feeling hopeless, defeated and alone. And, if you’re feeling sorry for us, I urge you to challenge yourself to change your mindset. The things we’ve seen him overcome are incredible. This kid is determined and he’s making a mark on this world. We all want to see him go home. But even more so we want to see him healthy and he’s still capable of achieving that. He just needs time 😉

Remember to check out our preview update for different ways you can participate in his birthday festivities next week! 

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