Adele needs your help!

This fundraiser is for my spunky and spirited seven year old niece Adele. If anyone is able to help I know it would be appreciated by Braden, Anna and family. They have a long and expensive road ahead of them filled with transfusions, Dr. Visits, surgeries, and hospital stays. Please share and use the hashtag #HelpAdeleGetWell. Every donation helps! 

Here’s what’s happened as told by my brother, Braden: 

So we’ve had a quite a week. 

For the last month or so, we had noticed an uptick of Adele getting, mostly small, bloody noses. On Sunday September 25th though, in the afternoon, Adele got a bloody nose that didn’t want to stop. We also noticed a lot of bruising around body we hadn’t seen before. The night nurse we called recommended we see our pediatrician in the morning. Adele was resting well at the time. Monday morning started right away with a concerned and very short Pediatric visit. Around that time Adele had begun to faint. That led to a quick drive to the local ER. They rushed her right in. The blood work they did there was very concerning and soon Adele and Mom took an ambulance ride up to Primary Children’s ER in Salt Lake City. It appeared from that initial blood work that she may have Leukemia. Primary Children’s ER was able to stop the bleeding and calm her stomach (the blood had been draining there) and then they moved her upstairs to the pediatric ICU. At that point Adele was critically anemic and she was a yellowish white color all over. The wonderful team in the ICU stabilized her and and got her blood levels back up to a safer place over the next day through a series of platelet and red blood cell transfusions. We were able to move to a more normal room Tuesday evening. 

Since then the teams at Primary Children’s continued to work with Adele to strengthen her and we’ve done a variety of tests to determine the exact cause. She responded very well to everything and is much more herself again. She did lots of exploring of the hospital and arts and crafts. Seeing her energy and life come back was good for Mom and Dad’s hearts. 

Adele had a bone marrow biopsy Wednesday to test for Leukemia. She was not excited about a prospect of a surgery, but went in bravely. Later on Thursday we got the news from our Oncology/Hematology team that this is NOT Cancer. Leukemia was the most likely cause and has similar symptoms. The condition she does have though is more rare and is called Aplastic Anemia. Essentially it’s a condition in which the bone marrow is failing or it is being destroyed. The body fails to produce enough blood cells; not enough red blood cells to carry oxygen and nutrients the organs, not enough white blood cells to fight infection, and not enough platelets to stop bleeding when needed. There are a few things that can cause this condition and they are now testing to determine the exact “why”. We are very happy it is not cancer, but unfortunately treatment for Aplastic Anemia can potentially be a bit harder than the most common type of Leukemia. 

In Adele’s case, she actually only has 10% of the bone marrow she should. For context, she has levels equivalent to a 100 year old. She’s not producing nearly enough blood cells for her little body. 

We'll know the cause in a few days to a few weeks depending on what it is. 

Adele was happy to go home Saturday night! Wonderful family and friends have helped the whole week to make sure our three other little ones were well taken care of. It was huge help. Adele will have home nurses come in as needed and she’ll go in for further transfusions at least once a week. 

The most likely treatment is a complete bone marrow transfusion/ replacement. They’ll use chemotherapy to kill off the rest of her bone marrow and then give her a transfusion of new bone marrow stem cells from a donor. We’re hoping she develops super powers in the process... Direct siblings are often very compatible donors, but they have a whole database of donors and a complete stranger may have the closest match. The closer the match the less possibility of rejecting the transplant. 

We have a long road to go still. It won’t be an easy one to walk with her. Once we’re ready for her transplant it’s a 4-6 week hospital stay and at least a year of further followup and treatments. We would love any and all prayers and positive thoughts you can send her way. 

One further ask for everyone... because of COVID, blood donations have been down the last couple years. With the recent hurricanes, hospitals are expecting a platelet shortage and have started rationing platelets. This has affected Adele in a small way, but many people will need help due to the storms. I’d just like to encourage anyone who is able to go donate blood if they can. There are many people who are, and will be, in need of it. Thanks all. The outpouring of the support has been wonderful. ❤