The Lily Davis Memorial fund

https://www.bendbulletin.com/slideshows/1739032-151/rare-blood-disorder?amp=1 In 2013, Lily received the best news of her life, she was pregnant. What was supposed to be one of the happiest times of Lily and Silas’ lives was quickly changed after her first blood tests came back. The nurse called and said she needed to come in immediately and that her platelets and other counts were dangerously low. After many labs, and a bone marrow biopsy Lily learned that she has two serious illnesses, called Aplastic Anemia and Paroxysmal Nocturnal Hemoglobinuria (PNH). PNH is a very rare blood disease that destroys red blood cells and impairs bone marrow function. It also poses a serious risk for blood clots and therefore Lily has been receiving intravenous treatments every two weeks with one of the world’s most expensive drugs called eculizumab (Solaris) to reduce the risk for thrombosis. This is the only drug available for people with PNH.

Aplastic Anemia is also a rare bone marrow failure disease that stops production of normal blood cells. She has taken various drugs for this disease such as steroids and immunosuppressants, but none have ever had any positive impact on her condition. She has also needed many blood transfusions.

The doctors told Lily if she went forward with the pregnancy that she would most likely die. Lily could not move forward with their recommendation to terminate the pregnancy and was willing to give her own life for her baby boy. On May 30, 2014, an angel was born after a very scary emergency c-section. Shortly after, I got the phone call that my friend was still alive and that both mom and baby were doing well. We are so thankful for this miracle but are needing another miracle as Lily is now in serious need of a bone marrow transplant and is critically ill.

Lily has been living with low red blood cells, white blood cells and platelets since her diagnosis and struggles with horrible side effects such as shortness of breath, extreme fatigue, severe bruising, and has even bled from her eyes, ears, and other areas due to severely low platelets, and therefore has been unable to work or live a normal life since her diagnosis.

This brings us to today (8/17/2019), over the last month or so Lily’s counts have come crashing down to virtually 0 and is now transfusion dependent every few days. She is in imminent need of a bone marrow transplant. This is the only cure for both diseases but comes with many risks which is why this has been prolonged. Thankfully her hematologist/oncologist found a match in the registry who is willing to donate their marrow to Lily. Thank-you to whomever you are, from the bottom of our hearts- I can’t express my gratitude as you are saving the life of my best friend who is a mother of two, and so loved by everyone who knows her. There are not words for this selfless act and we are eternally grateful.

On September 7, 2019 Lily will be admitted to OHSU hospital in Portland, OR to begin her transplant journey. During this time, she will receive high dose chemotherapy and full body radiation. She will then receive the donated bone marrow on September 12th which also happens to be her little girl’s birthday. Due to the severity of her disease she will receive another round of chemo post-transplant. Her hospital duration will depend on how well everything goes, it could be weeks to months. We are praying she has minimal side effects (aside from hair loss) from the chemo and radiation and that the transplant is successful, so she can return home as soon as possible. After the transplant she will need 24/7 care as it will take several months for her to regain her strength and to determine if the transplant engrafts. She will need an at home care provider, and family and friends to help with the endless tasks of being a mother of two.

It goes without saying that she will not be able to work and will rely on donations to help with all of the additional expenses such as medical bills, child care, and any other expenses that come up along the way. She is also in need for friends and family to help with her kids as her husband will now be taking on the household while Lily is away while also working a full time job. 

Today I ask that you give whatever you can to this wonderful women, and friend of mine for the last two plus decades. She is the mother of two adorable kids, Chloe and Silas who need their mama to be healthy again, and her husband Silas who has been there by her side, supporting her from day one. She is in immediate need of help in any way that we can offer her. We completely understand if you are unable to donate and would ask in lieu of a monetary donation that you join the Be The Match registry and potentially save another person’s life. https://join.bethematch.org.

Please keep Lily and her family in your prayers as she begins the battle for her life.

I will be posting updates throughout her transplant, thank-you.

Megan Drummond